tag:blogger.com,1999:blog-85721029376124082672024-03-27T23:53:21.311+00:00Stickman CommunicationsThe official blog for Stickman Communications - addressing disability related needs and life issues through simple, fun stickman cartoons; creating instant understanding of complex issues.
By Hannah Ensor - cartoonist and Chair of the board of trustees of the Hypermobility Syndromes AssociationHannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.comBlogger379125tag:blogger.com,1999:blog-8572102937612408267.post-41814316492846169722024-03-21T11:11:00.000+00:002024-03-21T11:11:10.163+00:00When stimming meets conflicting needs<p>This is a really important topic - and one that seems rarely talked about.</p><p>Stimming can be a useful self regulatory tool - gaining sensory input that enables concentration, focus, processing and expression of emotions, and more. I often see information about the importance of <b>not </b>trying to stop people doing harmless stims just because it's 'not the done thing' or 'isn't neurotypical behaviour' - and this is absolutely correct.</p><p>But sometimes stims can conflict with someone elses needs. What then?</p>There is a big difference between demanding someone stops a harmless stim because it's 'not neurotypical behaviour', and asking someone to stop/change a stim due to conflicting needs while understanding their needs and trying to find a compromise that works for everyone.<p>Here's an example from my life:</p><p>When I'm a certain level of fatigued/overwhelmed - which often happens when I'm out at an event or something - I have to move while talking. Often this involves rocking slightly and lots of hand wringing/gestures. I think this movement helps me compensate for my poor proprioceptive feedback due to hypermobility, and boost my circulation and blood flow to the brain (a PoTS related issue).</p><p>I have a friend with a brain injury that has left her with (among other things) significant balance issues and vertigo.</p><p>We were both at an event, both getting towards the end of our coping capacity, and really wanting to have a conversation together.</p><p>Her: "Um...is there any way you can sit still? Otherwise I think I might fall out my chair"</p><p>Me: *Sits on hands to see if the pressure will meet that feedback need. Concentrating on staying still wipes out all conversation brain* "I don't think I can be still and talk...."</p><p>And we both needed to see each other's faces as lip reading really helps us both in busy environments so shutting eyes/turning away wasn't an option.</p><p>The outcome?</p><p>She held a piece of paper up so only my head was visible above it. While I limited my movements to lower body and hands - keeping my head still. This meant I was able to get enough movement to maintain my function, and she got enough visual stillness to maintain her function. </p><p>My stim was adapted - but still met my needs well enough, and her sensory input was manageable.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_5psWuxXG0u5JsjmRnZA1eWmNPYoFBSD5X51vloycuu4hM5gt6OGx3p2I-0qsWUjShb4Oe1eFanSexG-khmaxbzAeV5Am6YzupbeEaXyhAM2FgZX1g_raJHIFrFXvlMwaxEs8kJnwXaSIQ43h_MLG1tM4AEGfCO5n6NZ2-plfi48ki0_EZYpmLEgcxtk/s940/FAcebook%20notes%20(4).png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="2 hands holding up a piece of paper that says 'respect is the key'." border="0" data-original-height="788" data-original-width="940" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_5psWuxXG0u5JsjmRnZA1eWmNPYoFBSD5X51vloycuu4hM5gt6OGx3p2I-0qsWUjShb4Oe1eFanSexG-khmaxbzAeV5Am6YzupbeEaXyhAM2FgZX1g_raJHIFrFXvlMwaxEs8kJnwXaSIQ43h_MLG1tM4AEGfCO5n6NZ2-plfi48ki0_EZYpmLEgcxtk/w320-h268/FAcebook%20notes%20(4).png" width="320" /></a></div>My take on this conflict of needs is that it is absolutely OK to raise the issue and look for a workable solution - and the key elements of this include:<p></p><p></p><ol style="text-align: left;"><li>Explicit recognition, acceptance, and respect of the fact that the stim is meeting a need for the stimmer. (And therefore, that the stim itself is not the problem - the problem is the conflict of needs). Many people who naturally stim have had years of being told it is bad, they are bad for doing it, and being forced to stop - leading to dysregulation and lasting harm. So just asking them to stop will sound like perpetuating the harm they are trying to heal from. So it is vital to make it absolutely clear from the start of the interaction that you totally respect that they are doing something constructive - not wrong. </li><li>Clear statement of what the conflict is. For example, "Unfortunately it's giving me sensory overload/making me unable to concentrate/making me dizzy/triggering my misophonia" etc. This information is key to finding an appropriate solution.</li><li>A suggestion for a way forward (or even a couple of options), and be prepared for a solution that involves me to make some accommodations - not just them. For example "Do you mind if I move slightly so you aren't in my line of vision - then we can both can focus." - or the compromise from my example where I changed my stim for one slightly less effective but good enough - and she got enough visual stillness, but had to hold up a piece of paper.</li></ol><p></p><p>If I can't think of any suggestions for a way forward, then I'd ask something like "I'm not really sure what the best way forward is that will allow us both to function as well as possible. Do you have any ideas?" </p><p>Sometimes the solution might be simple and effective, often it's a compromise, and sometimes you might not be able to find a solution that allows you both to be in the same space. But whatever the outcome, for me the core issue is truly believing that this isn't one person being annoying/inappropriate - it is two people with conflicting needs (whether those are disability or diagnosis related or not), and working together to find a way forward.</p><p>This blog isn't sharing the perfect solution - it's what I've learned so far in life. I'm sure that over time I'll learn more and my approach will develop. But I don't think my underlying principle of truly, sincerely, deeply respecting that the stim isn't 'the problem' will ever change.</p><p><br /></p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-60428981312027325302024-03-17T18:17:00.000+00:002024-03-17T18:17:42.253+00:00Why a 'crash'/flare up isn't always a pacing fail for me.<p> <span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;">Pacing means I crash less often than I used to. But various things beyond my control will always give me a crash - from hormones to hot weather, to an emergency meaning I have to push through (or rather, push deeper into) symptoms. So will doing things that I decide will be worth the days (or weeks) of recovery. So crashes/flare ups/zombie attacks are still very much a routine part of my life.</span></p><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;">But something that has made a huge difference is working to see each crash, not as a failure, but as familiar territory that I know how to navigate. I have been here before, I have a pretty good idea what I need to do to recover, I have the skills to get through it.</span><div><br style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;" /><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;">It becomes...a softer, gentler experience. No blame. No guilt. Especially if I've been able to see it in advance - to recognise that yes, the expected consequence of the next few days will be a crash. And then I can create a cushion of realistic expectations. A place where emotionally, mentally and physically, it is safe for me to have my crash.</span></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDuLccS9VtZ1YQXGhyphenhyphend1ErRfPeA4ax4V5eWH0cU1htsgeTqfkyZW-C436ur-rGOAuoyNVqlEK5gL6y3nveuiwwAYaLmr4Zu5-XAwGfa0zGnxhd0We1O-jeRvJYg_AUnVfijqe4i-YfQWiQVFaEElFlo13OSf3DZgq7JrcF5CUjUYNtDxfW4XLMeGgQCKE/s4032/IMG_2252.JPEG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="The fluffy-socked feet of someone in bed, behind which are a bedside table with 2 candles on, and a glass door through which a rainy patio, some garden furniture, and a few plants are visible." border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDuLccS9VtZ1YQXGhyphenhyphend1ErRfPeA4ax4V5eWH0cU1htsgeTqfkyZW-C436ur-rGOAuoyNVqlEK5gL6y3nveuiwwAYaLmr4Zu5-XAwGfa0zGnxhd0We1O-jeRvJYg_AUnVfijqe4i-YfQWiQVFaEElFlo13OSf3DZgq7JrcF5CUjUYNtDxfW4XLMeGgQCKE/w240-h320/IMG_2252.JPEG" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><br /><div><br style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;" /><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;">I mean, my brain might tell me I failed and *should* have done better, but I've learned not to believe it. To respond with "In other words, I'm overwhelmed/burnt out/crashed and need a break/need time to recharge, and I know how to do that."</span></div><div><br style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;" /><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;">I'm not saying it's nice. But being able to 'actively accept' these times has made life better. Accepting that right now I'm in a crash/flare up/whatever so my capacity is massively reduced - and actively making choices that will help me recover.</span><br style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;" /><br style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px;" /><br /></div>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-79062357275790516992024-03-01T15:59:00.002+00:002024-03-17T18:11:18.921+00:00Venue Accessibility and Info: Garden House, Milton Hill<p> We will be holding an event - an 'Communicating about hidden disabilities' in-person seminar and social at <b>Garden House, Milton Hill, Steventon, Oxfordshire, OX13 6AF.</b></p><p>You can get tickets for it here: <a href="https://www.eventbrite.co.uk/e/communicating-about-hidden-disabilities-and-symptoms-tickets-851568122177?aff=oddtdtcreator">https://www.eventbrite.co.uk/e/communicating-about-hidden-disabilities-and-symptoms-tickets-851568122177?aff=oddtdtcreator</a></p><p>This blog is to provide more detailed information around accessibility - including the layout so people who need to familiarise themselves with what it is like can do so. Feel free to ask about anything I haven't covered.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBYf4VtwksQbIhlemxGSedryAI9joum014oUcigGqCWdvmGEl44BQIa5RGJr0utj7YERKv5jG5Ru8597Tkh_laAVRhZp7onuObfDH3Fg1rPwVx1uGRqbrNxmuiCnEMFhlEdHyVdpzV0wxI6iA0g9yyOpKW2s394Qt6h90hPdE__DWgOMNqLFKK-mexs5U/s510/GH%20distance%20view.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="510" data-original-width="503" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBYf4VtwksQbIhlemxGSedryAI9joum014oUcigGqCWdvmGEl44BQIa5RGJr0utj7YERKv5jG5Ru8597Tkh_laAVRhZp7onuObfDH3Fg1rPwVx1uGRqbrNxmuiCnEMFhlEdHyVdpzV0wxI6iA0g9yyOpKW2s394Qt6h90hPdE__DWgOMNqLFKK-mexs5U/s320/GH%20distance%20view.jpg" width="316" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><h3 style="text-align: left;">Carpark</h3><p>A large carpark outside the main entrance, with 2 disabled space on a brick paved area, and the rest of the spaces are unmarked and on very compacted gravel. This means that people who need extra space for accessibility can park however they need to, even if the disabled spaces are already full.</p><p></p><h2 style="text-align: left;">Inside</h2><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUfcWpEnqTsLVJPqWDoAXtDn0o5VFM6c5_2ykGGC1mw9bX0AqRFrdDqRUYaImM9UvslC3Pj5LQVNW4jbdzHlIRBrp2559Qfx95sBqfNog1c9Z1-FP8t0wFeFXIG4OcR_B0wfF780UjueyVqGIGMle1AS-TBTfNdXLL4lbz8vaGqRLU7URQuWKJfcLGIkk/s800/GH%20basic%20floorplan_1.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="800" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUfcWpEnqTsLVJPqWDoAXtDn0o5VFM6c5_2ykGGC1mw9bX0AqRFrdDqRUYaImM9UvslC3Pj5LQVNW4jbdzHlIRBrp2559Qfx95sBqfNog1c9Z1-FP8t0wFeFXIG4OcR_B0wfF780UjueyVqGIGMle1AS-TBTfNdXLL4lbz8vaGqRLU7URQuWKJfcLGIkk/w640-h480/GH%20basic%20floorplan_1.png" width="640" /></a></div><h3 style="text-align: left;">Entrance</h3><p>A brick paved slope down to the main entrance door, which opens by swinging outwards. This door will be propped open throughout the event. Through an entrance lobby with stairs (upstairs is out of bounds), and a swing door into the main building.</p><h3 style="text-align: left;">South wing</h3><h4 style="text-align: left;">Coffee bar and lounge area:</h4><div class="separator" style="clear: both; text-align: center;"><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg56iC3F-bqfmoPpEidtiH2-SMxEndsh2SUHCnNa5NeTxjjoelfwmPu2VsFjbn4qmY5iTw3VWuJq4ozClB0au_ZVlDrrwlS2hkL-YRnml5x0Psg3eYnxRBdGNbv4q3avXOEp8IYag5zd4AWdLfxQAAOV6tOZVDIqZTE24oqnnGkpkjGomsa6iPbZJMHSOk/s4032/IMG_2238.JPEG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg56iC3F-bqfmoPpEidtiH2-SMxEndsh2SUHCnNa5NeTxjjoelfwmPu2VsFjbn4qmY5iTw3VWuJq4ozClB0au_ZVlDrrwlS2hkL-YRnml5x0Psg3eYnxRBdGNbv4q3avXOEp8IYag5zd4AWdLfxQAAOV6tOZVDIqZTE24oqnnGkpkjGomsa6iPbZJMHSOk/s320/IMG_2238.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">View of the coffee bar area from inside the entrance.</td></tr></tbody></table></div><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSfAGob6A2u-Ff0TQ74UvOB1MAQpJzLizkNxHnc8Txdjr1oZCjDMy9_sqsUz9ij7QpKU2e9L9xnDxe5bhgP9T0lc5QTrEjgczlsUekCG7j1DycbSJbqIbjeQfYG0oy7jZNVfgVstLVj7gSqZlaSq5ucBBFhFQPdmHK2ESrcUK9fNzcdM66yuK9N06tySc/s4032/IMG_2237.JPEG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSfAGob6A2u-Ff0TQ74UvOB1MAQpJzLizkNxHnc8Txdjr1oZCjDMy9_sqsUz9ij7QpKU2e9L9xnDxe5bhgP9T0lc5QTrEjgczlsUekCG7j1DycbSJbqIbjeQfYG0oy7jZNVfgVstLVj7gSqZlaSq5ucBBFhFQPdmHK2ESrcUK9fNzcdM66yuK9N06tySc/s320/IMG_2237.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The lounge and seating area past the coffee bar with small childrens play area visible through the window.</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuThVh4d3J3y1dbop4cUAyxRd-w9fdWh_bY5JcSg70Grkrdqsd7N2-vieTSnxHEVJiKdYVuWjTIfhwerB1kndoih6JQR5riskRKBAnpQ0CmcTDEMf14Jkfs3774B4_OdvnJ62r9ODpfVHxGsAaPC8fzStY4NQsH3cDpIqquvRitenE7qgfdKJc94h8pl0/s4032/IMG_2236.JPEG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuThVh4d3J3y1dbop4cUAyxRd-w9fdWh_bY5JcSg70Grkrdqsd7N2-vieTSnxHEVJiKdYVuWjTIfhwerB1kndoih6JQR5riskRKBAnpQ0CmcTDEMf14Jkfs3774B4_OdvnJ62r9ODpfVHxGsAaPC8fzStY4NQsH3cDpIqquvRitenE7qgfdKJc94h8pl0/s320/IMG_2236.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The seating area past the coffee bar - the grey door on the end wall is to the quiet room.</td></tr></tbody></table><h4 style="text-align: left;">Quiet room</h4><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj58dZ8TrjF2wr89KwqcV7Ib3MdSkFv2zMtHmFwYphDakXt6h1I3LrqWxEuc2Nz5FAs-IPadVRkoL5LU7Zmgkq0YMQj8pP-Xu7yYF4oBQx9lNVqykw38cQdCXoqYAzgO_mXYEahPWO90zsIYqLRbqKF-_NWYD3vOSrt_C1gmHKVJ6Vuayx06Kpmip1TfFQ/s4032/IMG_2235.JPEG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj58dZ8TrjF2wr89KwqcV7Ib3MdSkFv2zMtHmFwYphDakXt6h1I3LrqWxEuc2Nz5FAs-IPadVRkoL5LU7Zmgkq0YMQj8pP-Xu7yYF4oBQx9lNVqykw38cQdCXoqYAzgO_mXYEahPWO90zsIYqLRbqKF-_NWYD3vOSrt_C1gmHKVJ6Vuayx06Kpmip1TfFQ/s320/IMG_2235.JPEG" width="320" /></a></div><br /><div><h4>Toilet facilities</h4><p>There are mens and ladies toilets on the left as you enter the South Wing, and a unisex accessible toilet on the left hand side just past the coffee bar. All the toilets have paper towels for hand drying. The accessible toilet also has baby changing facilities.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiryjHrw3P8al50lsk55v4ZonzNg69FSJkGCFKB4nBjMgkkqxocLsIEpYUozrcn-k23o2hgvRfchwRfbZREEQKT9B5i35SBLMHs7-ZnVw7JOnOzUO8_dIOSvw7YX2JMYPf-2JLSglkDW3f0HM3OEeMHUnbN7eVEHloPL1eBWX__wx4VL4J9isAQQKzImJY/s2160/layout_2.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="2160" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiryjHrw3P8al50lsk55v4ZonzNg69FSJkGCFKB4nBjMgkkqxocLsIEpYUozrcn-k23o2hgvRfchwRfbZREEQKT9B5i35SBLMHs7-ZnVw7JOnOzUO8_dIOSvw7YX2JMYPf-2JLSglkDW3f0HM3OEeMHUnbN7eVEHloPL1eBWX__wx4VL4J9isAQQKzImJY/w400-h200/layout_2.png" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The accessible toilet cubicle from standing in the entrance (LH image) and from sitting by the sink (RH image)</td></tr></tbody></table><h4 style="text-align: left;"><b>Coat racks </b></h4><p>(Please do not leave valuables on the coat racks.)</p><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><h3 style="text-align: left;">West wing</h3><p>The seminar will be held in the West Wing. It will have theatre-style seating layout (i.e. rows of seats, with a central aisle). There will be spaces for wheelchair users at the ends of rows, and at the back of the blocks of seats. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4lJdDf6D3aHcCyWADtwEJS9gSPrDifOKAfE6h5nkZ2EyaoE4tKiQfghvXo6aprrsfVEqXmr4t32WM2BGpPah2Tl7Ve5hoVmEbOnM65GkDKtQn22qKvK1pdmmY9TPPiAOOoN0Xg4o0TkM37hxEXewI2whB3KHtAyggXTd3NNrSvtV45tx19R_R1GamxfI/s4032/IMG_2239.JPEG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4lJdDf6D3aHcCyWADtwEJS9gSPrDifOKAfE6h5nkZ2EyaoE4tKiQfghvXo6aprrsfVEqXmr4t32WM2BGpPah2Tl7Ve5hoVmEbOnM65GkDKtQn22qKvK1pdmmY9TPPiAOOoN0Xg4o0TkM37hxEXewI2whB3KHtAyggXTd3NNrSvtV45tx19R_R1GamxfI/s320/IMG_2239.JPEG" width="320" /></a></div><br /><p>During the seminar, a microphone and speakers will be used, but there is no hearing loop.</p><p>There are windows all along the left hand wall of the room. If it is too bright, we can close the blinds.</p><p>The skylights can be opened for ventillation, as can several louvred window panels, a fire exit on the far right, and 2 sliding doors on the left.</p><h2 style="text-align: left;">Outside</h2><h3 style="text-align: left;">Patio area</h3><p>Wide sliding door from the south wing, with a portable metal ramp (I will measure and photograph the ramp when I next am at the venue)</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJnlw5oWZ5mZBNEF4heKBq-RW-gP7f365oV31XoOuR5gtmGrKF5am5fXHcm1FIP56Np2wQIKfyi36QnKR6dcArCowQcYHeQFpeSeWcoqTsP1wt29XodBKKXrEeNkm9r7Rs7N1OVI0MVSCz5nTGsArpJAkobJSGAY9zzcbGT3zDqHuUQAYmmxe0uXSesf8/s4032/IMG_2240.JPEG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJnlw5oWZ5mZBNEF4heKBq-RW-gP7f365oV31XoOuR5gtmGrKF5am5fXHcm1FIP56Np2wQIKfyi36QnKR6dcArCowQcYHeQFpeSeWcoqTsP1wt29XodBKKXrEeNkm9r7Rs7N1OVI0MVSCz5nTGsArpJAkobJSGAY9zzcbGT3zDqHuUQAYmmxe0uXSesf8/s320/IMG_2240.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">A view of the patio area from in the main event room.</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsciEPk01ftaSRwO1BK5G5-BN_FptBRBoR90HpPoi0XfBIprT2xpySOM4zO3QuWG2bBcMngC-g6s2-aytATjjPN1CDvPBZEHNHn028otNb_o96gVEk_K30cS4RBEWViUh_96xpGHqr23i42OxabH8cPyOgsExuMZ6iqV5KTjJGGQ5R69U15K9Sg8o_wrc/s4032/IMG_1620.JPEG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsciEPk01ftaSRwO1BK5G5-BN_FptBRBoR90HpPoi0XfBIprT2xpySOM4zO3QuWG2bBcMngC-g6s2-aytATjjPN1CDvPBZEHNHn028otNb_o96gVEk_K30cS4RBEWViUh_96xpGHqr23i42OxabH8cPyOgsExuMZ6iqV5KTjJGGQ5R69U15K9Sg8o_wrc/s320/IMG_1620.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">On the patio.</td></tr></tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyOqiw5-p7GlT9Pyooaln6h1r1LJCwqCrwnelKbMCLhKGPJVtMBEaB8VIUeBVxQmlAvliiD0IJhQsjDL31wwWONkAXy9_cHESdhC6HOXCF4XrTIRDCJM6cAOVj52VlkXx8buGLR_cPN_V7ez3P-x8mOELSBsJtDxIWDXKeP7_7N7PUOdgx1IYpI6P-ek/s4032/IMG_2271.JPEG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyOqiw5-p7GlT9Pyooaln6h1r1LJCwqCrwnelKbMCLhKGPJVtMBEaB8VIUeBVxQmlAvliiD0IJhQsjDL31wwWONkAXy9_cHESdhC6HOXCF4XrTIRDCJM6cAOVj52VlkXx8buGLR_cPN_V7ez3P-x8mOELSBsJtDxIWDXKeP7_7N7PUOdgx1IYpI6P-ek/s320/IMG_2271.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The ramp onto the patio. It is 700mm wide</td></tr></tbody></table><br />Note that there is an alternative level access route around the right hand side of the building and along a path to the patio.<br /><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><h3 style="text-align: left;">Play area (young children)</h3><div><br /></div><div>This is in a small, self contained fenced area accessed directly from the lounge area in the South wing.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf0RvOIV3csR0OTOwtbsGUBk5O6RLOMnGReepYmcnf9yTQ1VtO0skDiFcghMwqSZsvP96zLYT59NMQQwDG3yDnFdENrCBIJJ9NY_Hi3PWbfiLM9o9hd3T0M_3ks7AkL6stacRH6ke9XRryRpLBAKY9mLTNHHDXJgXTNYiwHiHwlKwvO4QLOF3i5quw_5g/s4032/IMG_2308.JPEG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf0RvOIV3csR0OTOwtbsGUBk5O6RLOMnGReepYmcnf9yTQ1VtO0skDiFcghMwqSZsvP96zLYT59NMQQwDG3yDnFdENrCBIJJ9NY_Hi3PWbfiLM9o9hd3T0M_3ks7AkL6stacRH6ke9XRryRpLBAKY9mLTNHHDXJgXTNYiwHiHwlKwvO4QLOF3i5quw_5g/s320/IMG_2308.JPEG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSfAGob6A2u-Ff0TQ74UvOB1MAQpJzLizkNxHnc8Txdjr1oZCjDMy9_sqsUz9ij7QpKU2e9L9xnDxe5bhgP9T0lc5QTrEjgczlsUekCG7j1DycbSJbqIbjeQfYG0oy7jZNVfgVstLVj7gSqZlaSq5ucBBFhFQPdmHK2ESrcUK9fNzcdM66yuK9N06tySc/s4032/IMG_2237.JPEG" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSfAGob6A2u-Ff0TQ74UvOB1MAQpJzLizkNxHnc8Txdjr1oZCjDMy9_sqsUz9ij7QpKU2e9L9xnDxe5bhgP9T0lc5QTrEjgczlsUekCG7j1DycbSJbqIbjeQfYG0oy7jZNVfgVstLVj7gSqZlaSq5ucBBFhFQPdmHK2ESrcUK9fNzcdM66yuK9N06tySc/s320/IMG_2237.JPEG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The lounge and seating area past the coffee bar with small childrens play area visible through the window.<br /><br /></td></tr></tbody></table></div><br /><div><br /></div><div><br /></div><h3 style="text-align: left;">Grass area</h3><div>With trees, and some mown grass paths through what is rapidly becoming a sea of daffodills, there is also a more open area near the main building which can be used for ball games, and various benches/seats throughout the grounds.</div><div><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW-rvggB27l_5SnpQ8sjvW38twDmLYjlp3WA8Jb_T914rHyfoGMVYGYkL_zFXu3ZfHKEuv5K5EEhcVodIKl4jC3Y9ww1my7IPdChKRgxbr2r9NUvhmk0erQC9sI9QyyiP6zWeybPQrk4tyjqhYorIdh4dHRXDgfiZZ6Tbk64rGpBNwoFmiWcuVNIZ4EpA/s680/daffodils.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="382" data-original-width="680" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW-rvggB27l_5SnpQ8sjvW38twDmLYjlp3WA8Jb_T914rHyfoGMVYGYkL_zFXu3ZfHKEuv5K5EEhcVodIKl4jC3Y9ww1my7IPdChKRgxbr2r9NUvhmk0erQC9sI9QyyiP6zWeybPQrk4tyjqhYorIdh4dHRXDgfiZZ6Tbk64rGpBNwoFmiWcuVNIZ4EpA/s320/daffodils.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Photo taken from standing in the wooded area, looking back towards the building.</td></tr></tbody></table><br /><h3 style="text-align: left;">Play area (older children)</h3><div>There are swings and a play area for older children. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4KoLtXrvWBtvce6G1Vlrs1qXyN5uzCcLDomZcYzJAQRJVASzMzmLBHZmZzxhzfjO5rOj-n7zhZvwDRjivqJYFqoxg-pMZz3gxQqjFBOz8xI-QYSFOq_Cior1Pkcy6P7ZiNWqQlKays5fUOzkUFhQ84epDwh9pG_g3UO_R1jRUAuDpW_dXsvsJjQSS3xc/s4032/IMG_2309.JPEG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4KoLtXrvWBtvce6G1Vlrs1qXyN5uzCcLDomZcYzJAQRJVASzMzmLBHZmZzxhzfjO5rOj-n7zhZvwDRjivqJYFqoxg-pMZz3gxQqjFBOz8xI-QYSFOq_Cior1Pkcy6P7ZiNWqQlKays5fUOzkUFhQ84epDwh9pG_g3UO_R1jRUAuDpW_dXsvsJjQSS3xc/s320/IMG_2309.JPEG" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKjAOWrACm6pdlFiN6LrbYR6FTZuLOgg59N45mbnv0loYk0ZcpZPbm8VePFKxWbazZIxaeZ-FNxyQV5Qd5K2VcIlgdj1_FXOM-tVvml6rWTjo5_8vOXU3_1tIoDECytdUotEa9DEPR1a8HtTh_WfqlksbLBTZF7HpscTd3rqFw-zDOD3cisTe6U9_q7nc/s4032/IMG_2310.JPEG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKjAOWrACm6pdlFiN6LrbYR6FTZuLOgg59N45mbnv0loYk0ZcpZPbm8VePFKxWbazZIxaeZ-FNxyQV5Qd5K2VcIlgdj1_FXOM-tVvml6rWTjo5_8vOXU3_1tIoDECytdUotEa9DEPR1a8HtTh_WfqlksbLBTZF7HpscTd3rqFw-zDOD3cisTe6U9_q7nc/s320/IMG_2310.JPEG" width="320" /></a></div><br /><div><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyOqiw5-p7GlT9Pyooaln6h1r1LJCwqCrwnelKbMCLhKGPJVtMBEaB8VIUeBVxQmlAvliiD0IJhQsjDL31wwWONkAXy9_cHESdhC6HOXCF4XrTIRDCJM6cAOVj52VlkXx8buGLR_cPN_V7ez3P-x8mOELSBsJtDxIWDXKeP7_7N7PUOdgx1IYpI6P-ek/s4032/IMG_2271.JPEG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyOqiw5-p7GlT9Pyooaln6h1r1LJCwqCrwnelKbMCLhKGPJVtMBEaB8VIUeBVxQmlAvliiD0IJhQsjDL31wwWONkAXy9_cHESdhC6HOXCF4XrTIRDCJM6cAOVj52VlkXx8buGLR_cPN_V7ez3P-x8mOELSBsJtDxIWDXKeP7_7N7PUOdgx1IYpI6P-ek/s320/IMG_2271.JPEG" width="320" /></a></div><br /><br /><br />Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-10949963645809523552024-03-01T15:40:00.005+00:002024-03-01T15:40:49.460+00:00Our Top 13 Products relevant to ME<p> We often get asked which of our products are relevant to ME. Dozens are potentially relevant - but browsing through them all may not be realisitc, so here is a shortlist of our top 13 ME-related products:</p><p>(If you create an account on our website, you can then click the links and save the ones you might want to your wishlist - then they will all be in one place, and you can go back later and decide which ones to buy.)</p><p style="text-align: left;"><span style="text-align: center;">-------------------------------------------------</span></p><h3 style="text-align: left;">1. ME card</h3><p>This card gives an overview of ME, so that you can explain without having to explain, and the format helps the reader to absorb the information rather than argue it. </p><p style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD5u2z0krWji9vapgF9A1H9is2HwlcRTBGd3ElD3ocRlXl-td_Rn3waKAzpQfjYBcnxPJ6iBCP91fhBdGV6PhWY9A9Pn2NpLiOllN1yAjXqkouF5qkBz5Jw6nSdghsf-w0ixdfMYJQ_kGzi-YnF9VMou6d06sM8rm0EPQ_5jaS8255zsRMDY8vIlC5SX4/s800/CC168%20plain%20ME%20card%20WEBSITE%202023%2010%2018_1_3.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD5u2z0krWji9vapgF9A1H9is2HwlcRTBGd3ElD3ocRlXl-td_Rn3waKAzpQfjYBcnxPJ6iBCP91fhBdGV6PhWY9A9Pn2NpLiOllN1yAjXqkouF5qkBz5Jw6nSdghsf-w0ixdfMYJQ_kGzi-YnF9VMou6d06sM8rm0EPQ_5jaS8255zsRMDY8vIlC5SX4/s320/CC168%20plain%20ME%20card%20WEBSITE%202023%2010%2018_1_3.png" width="320" /></a></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><br /></div></div><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)<p></p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/me-card/" target="_blank">https://stickmancommunications.co.uk/product/me-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/me-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/me-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">2. Brain fog card</h3><p>Helping people to understand what brainfog really means - showing this card can let people know your current limitations, so their expectations can be realistic.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9jOtRadDmjL_RzogCGfK8PiCEB0EkAgg0mHg_hJMBZ1Oq6rdfv3GieKKG10-R0QQKSRBIF14NeckkmHry70UCxcKGRxDIonkJu-77NgtQOIfH1rm-aLUdU0r8s6KumgTpZlQcVn-Gha-TaIfFY40v3mKHMnyU_9TYQu2drVPQsTmxBcZ8eGWXHCtQDd4/s1000/CC004-N-striped%20brain%20fog%20card%20SM%202024%2002%2009_3.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="1000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9jOtRadDmjL_RzogCGfK8PiCEB0EkAgg0mHg_hJMBZ1Oq6rdfv3GieKKG10-R0QQKSRBIF14NeckkmHry70UCxcKGRxDIonkJu-77NgtQOIfH1rm-aLUdU0r8s6KumgTpZlQcVn-Gha-TaIfFY40v3mKHMnyU_9TYQu2drVPQsTmxBcZ8eGWXHCtQDd4/s320/CC004-N-striped%20brain%20fog%20card%20SM%202024%2002%2009_3.png" width="320" /></a></div><b>Price:</b> £1.90 + VAT (Note: Disability VAT exemption is available on this product)<p></p><p><b>Striped border version: </b><a href="https://stickmancommunications.co.uk/product/brain-fog-card/" target="_blank">https://stickmancommunications.co.uk/product/brain-fog-card/</a></p><p><b>Plain border version: </b><a href="https://stickmancommunications.co.uk/product/brain-fog-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/brain-fog-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">3. Autonomic dysfunction card</h3><p>This card explains a common and often misunderstood set of symptoms that can often occur with ME.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja3SMRR4xrlTLTk4jP5eoseLIdajEtB91lsZY79_cmRVLOG5HXOeEamh_n9LRIq5jeoKrhOnBkmz9lqacJUksK9iB2bw-AeuVRnbl7ISAqLrJlnY_zyGPRvBuwGTdW5S6I16dnX9RsRvi4QrkhsrQxIkleoHnAETBbrt0SPFxJETzgwxQHrlYZXdXgpk4/s800/CC160%20striped%20autonomic%20dysfunction%20card%20WEBSITE%202023%2010%2018_20.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja3SMRR4xrlTLTk4jP5eoseLIdajEtB91lsZY79_cmRVLOG5HXOeEamh_n9LRIq5jeoKrhOnBkmz9lqacJUksK9iB2bw-AeuVRnbl7ISAqLrJlnY_zyGPRvBuwGTdW5S6I16dnX9RsRvi4QrkhsrQxIkleoHnAETBbrt0SPFxJETzgwxQHrlYZXdXgpk4/s320/CC160%20striped%20autonomic%20dysfunction%20card%20WEBSITE%202023%2010%2018_20.png" width="320" /></a></div><p style="text-align: left;"><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/autonomic-dysfunction-card/" target="_blank">https://stickmancommunications.co.uk/product/autonomic-dysfunction-card/</a></p><p><b>Plain border version</b>:<a href="https://stickmancommunications.co.uk/product/autonomic-dysfunction-card-plain/" target="_blank"> https://stickmancommunications.co.uk/product/autonomic-dysfunction-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">4. Pain card</h3><p>If we tell people you are in pain, we are complaining. If we don't then they demand we do things that we can't or are bewildered by our reactions. This card gives a lighthearted but very clear way to get that message across.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQe4rf_jruiq_7aIYmxSEE-rnfdOARrrZxnWbDXmaS0n0VAYsOsdH7Md8PyldMUU3DuyzNdX1Kk-LpH36YYFc9PRE-ZoOHSMLZQq9PWogGOJJalw9PW1AYL08GobgYuNHDVw8NbLM7NX2Ik5zERgc4bQMEykEzzHpaL5HHuLvdgTJ0OqNgsGb6Fk92yMk/s800/CC015-N%20plain%20pain%20cloud.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQe4rf_jruiq_7aIYmxSEE-rnfdOARrrZxnWbDXmaS0n0VAYsOsdH7Md8PyldMUU3DuyzNdX1Kk-LpH36YYFc9PRE-ZoOHSMLZQq9PWogGOJJalw9PW1AYL08GobgYuNHDVw8NbLM7NX2Ik5zERgc4bQMEykEzzHpaL5HHuLvdgTJ0OqNgsGb6Fk92yMk/s320/CC015-N%20plain%20pain%20cloud.png" width="320" /></a></div><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)<p></p><p><b>Striped border version:</b> <a href="https://stickmancommunications.co.uk/product/pain-2-card/" target="_blank">https://stickmancommunications.co.uk/product/pain-2-card/</a></p><p><b>Plain border version:</b> <a href="https://stickmancommunications.co.uk/product/pain-card-option-2-plain/" target="_blank">https://stickmancommunications.co.uk/product/pain-card-option-2-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">5. Lying down card</h3><p>For some people with ME (especially where there is an autonomic element) lying down is vital to symptom management, so here's a way to let people know and improve your ability to self-manage while in company.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBCgsKN1Ns9ObNq_NW8X_xaj25ugVUv7Jv25NGgh4NlsHVSMi_qaM8aP3vAaf-Z2zf2EmeMdYL9Jp0MkYd8VALHFfWTdAJwLUYOy05NVMD1EDqgO5IJYEV4llmE1NsoJZud1woEBO0Kuk3_i7yUesPvWh6_slgJlRhdzyyvINGvFHCjpqt8p-uQ0ISUQQ/s4032/CC112%202023%2007%2022.JPEG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBCgsKN1Ns9ObNq_NW8X_xaj25ugVUv7Jv25NGgh4NlsHVSMi_qaM8aP3vAaf-Z2zf2EmeMdYL9Jp0MkYd8VALHFfWTdAJwLUYOy05NVMD1EDqgO5IJYEV4llmE1NsoJZud1woEBO0Kuk3_i7yUesPvWh6_slgJlRhdzyyvINGvFHCjpqt8p-uQ0ISUQQ/s320/CC112%202023%2007%2022.JPEG" width="320" /></a></div><p></p><p><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/lying-down-card/" target="_blank">https://stickmancommunications.co.uk/product/lying-down-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/lying-down-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/lying-down-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">6. Finding speaking difficult card</h3><p>It's so frustrating when you are trying to say something but keep getting interrupted - they are trying to be helpful but what you really need is for them to be patient and wait for you to get the words out. Showing this card can instantly get them to change their behaviour and reduce the stress levels all round.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8q6u-nxVuR78HDzwlRCL5aQ3MIrUIVBQGhPFebc2_-ihaZBAEsBRFLhgoIrm8Epxax4GJcW-Y6U27ZPMQibI2FqV0t4lmMu0xVjZR0yzGLzu1jf_pXizBQyR7qqRCtKrXlQ1joCS1GMrlBaQf2Fh8mO3P666t8TaPo2gq-JIZ_r9C3tpIcee0TtUKD4/s1000/CC088%20difficulty%20speaking%20card%20plain_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="1000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8q6u-nxVuR78HDzwlRCL5aQ3MIrUIVBQGhPFebc2_-ihaZBAEsBRFLhgoIrm8Epxax4GJcW-Y6U27ZPMQibI2FqV0t4lmMu0xVjZR0yzGLzu1jf_pXizBQyR7qqRCtKrXlQ1joCS1GMrlBaQf2Fh8mO3P666t8TaPo2gq-JIZ_r9C3tpIcee0TtUKD4/s320/CC088%20difficulty%20speaking%20card%20plain_1.jpg" width="320" /></a></div><br /><p><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/difficulty-speaking-card/" target="_blank">https://stickmancommunications.co.uk/product/difficulty-speaking-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/difficulty-speaking-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/difficulty-speaking-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">7. Fatigue card</h3><p>Because people who haven't experienced fatigue rarely realise how far beyond 'tired' it is.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7e6CtwSsD0r6f56uYnbZDQSv3HTT-tIhxszIlCHQJ8PtODhuapRTazKqJSrovOMAS9hjlGEs7pNPpq90PdmqQlgGhWqyCCTCjfkTHL5JPtPWl3K1OH_rOlFdn0Hnsq50jCEbh63eMnIpBO9CSkg-AviaPvWzL6vU903Q5ChuSsrtvEeTBPf-yXO7j8jQ/s1280/CC087-N-plain%20Fatigue%20card.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7e6CtwSsD0r6f56uYnbZDQSv3HTT-tIhxszIlCHQJ8PtODhuapRTazKqJSrovOMAS9hjlGEs7pNPpq90PdmqQlgGhWqyCCTCjfkTHL5JPtPWl3K1OH_rOlFdn0Hnsq50jCEbh63eMnIpBO9CSkg-AviaPvWzL6vU903Q5ChuSsrtvEeTBPf-yXO7j8jQ/s320/CC087-N-plain%20Fatigue%20card.jpg" width="320" /></a></div><br /><p><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/fatigue-card/" target="_blank">https://stickmancommunications.co.uk/product/fatigue-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/fatigue-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/fatigue-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">8. Decisions poster</h3><p></p>When we say no to something, people often don't realise a whole process of weighing up likely outcomes, possible things that might help etc has happened in the background. This poster helps externalise some of that process helping us make sensible decisions but also helping other people to understand and respect those decisions.<p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheqF86udd8rmKntbRHIBUOK6GJ5LKJL2fQjxIkPmIXveymXhrV1ZFoiSkOlqepQ4u85N89or3ekdf-AtfJxAt8u4rx1eyI4T4KuCsgNHmEZrgMNztJEA511iwkAQzkeVAbAzK8KljdG76WliAVOUtejiHo83FDw_Xfq6HRyr3FjfaWf_dsckW2nS0xuh4/s1000/To-Do-or-Not-To-Do-poster-.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="1000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheqF86udd8rmKntbRHIBUOK6GJ5LKJL2fQjxIkPmIXveymXhrV1ZFoiSkOlqepQ4u85N89or3ekdf-AtfJxAt8u4rx1eyI4T4KuCsgNHmEZrgMNztJEA511iwkAQzkeVAbAzK8KljdG76WliAVOUtejiHo83FDw_Xfq6HRyr3FjfaWf_dsckW2nS0xuh4/s320/To-Do-or-Not-To-Do-poster-.png" width="320" /></a></div><b>Price</b>: From £1.20 (including VAT)<p></p><p><b>Link</b>: <a href="https://stickmancommunications.co.uk/product/activity-decision-chart-pacing-poster/" target="_blank">https://stickmancommunications.co.uk/product/activity-decision-chart-pacing-poster/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">9. Pocket book of pacing</h3><p>This book is all about energy management - but in simple illustrations and short sentences. It can be dipped into a little bit at a time. It covers lots of things you can do to help minimise crashes, and get the best out of the energy you have. </p><p>(Note: This is not pacing as a cure, or demanding increasing levels of activity. It is about learning to live with conditions that cause very real energy limitations, based on lived experience.)</p><p></p><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp7aG_DNnNTmDT-mxpOYkwP2Jdafatx-1W7kkYH_Lz-d2CrQ7FC56IScdMLFq4AOXc6wTYpt30q-zQZPInC-9PmSZRqk3leIi0nQce0IFhDZJ0MLEob7phRkuaOl3DkMhFA_BVAdYPSlYIhzMj2xIQui55nEf_O9OlH3LU-qoWuMtWLVASJKShI5JE-Ug/s4032/IMG_0823.JPEG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp7aG_DNnNTmDT-mxpOYkwP2Jdafatx-1W7kkYH_Lz-d2CrQ7FC56IScdMLFq4AOXc6wTYpt30q-zQZPInC-9PmSZRqk3leIi0nQce0IFhDZJ0MLEob7phRkuaOl3DkMhFA_BVAdYPSlYIhzMj2xIQui55nEf_O9OlH3LU-qoWuMtWLVASJKShI5JE-Ug/w189-h252/IMG_0823.JPEG" width="189" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzSrD_AQQ1-bdHCefzooVIf-h-sZBiFJvEtmpnXRLDS1jacOetgV13e6HpGvmSUJ9vJD37G6LCmxUNBHygMMmBIGd7i2s-Ir8A6GZT9_4tP-2l3kiqPdEzNFdRrKBgiPOii0z-ijrBi1g-7t-JRgbaPyg09YfuzRiAm04jLZRhRyIQTFfq8wKc3MCpArs/s4032/IMG_0885.JPEG" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzSrD_AQQ1-bdHCefzooVIf-h-sZBiFJvEtmpnXRLDS1jacOetgV13e6HpGvmSUJ9vJD37G6LCmxUNBHygMMmBIGd7i2s-Ir8A6GZT9_4tP-2l3kiqPdEzNFdRrKBgiPOii0z-ijrBi1g-7t-JRgbaPyg09YfuzRiAm04jLZRhRyIQTFfq8wKc3MCpArs/s320/IMG_0885.JPEG" width="320" /></a></div><b>Price</b>: £5.50<p></p><p><b>Link</b>: <a href="https://stickmancommunications.co.uk/product/the-pocket-book-of-pacing/" target="_blank">https://stickmancommunications.co.uk/product/the-pocket-book-of-pacing/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">10. Now is.... wristband. </h3><p>With limited energy, the last thing we want to do is use it in constantly updating people on how we are. And yet if we don't update them they are pretty much guaranteed to get it wrong. These reversible wristbands give a quick and easy way to say how you are doing to anyone who's around you.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy1oe4x1r1njWWSkItLCetE8YKS_J80DHdvyER21FOtnOrXUGGcALhGB-0e3CZCjrkY_lHvGTjkeRBLxQmkARFC7LdmMiPFvp-G0R0mtmMj3HoVX7n6pAlfFIUqH8NjjCLzRbpoCeUMeniXYdLCBX2XFMQLOkiaVp6-pRIi3DC_VmFC0XxMLpcWKSG4VA/s1000/Now%20is%20wristband%20red.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="1000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy1oe4x1r1njWWSkItLCetE8YKS_J80DHdvyER21FOtnOrXUGGcALhGB-0e3CZCjrkY_lHvGTjkeRBLxQmkARFC7LdmMiPFvp-G0R0mtmMj3HoVX7n6pAlfFIUqH8NjjCLzRbpoCeUMeniXYdLCBX2XFMQLOkiaVp6-pRIi3DC_VmFC0XxMLpcWKSG4VA/s320/Now%20is%20wristband%20red.png" width="320" /></a></div><p></p><p><b>Price</b>: £7.20</p><p><b>Link</b>: <a href="https://stickmancommunications.co.uk/product/now-is-symptom-wristband/" target="_blank">https://stickmancommunications.co.uk/product/now-is-symptom-wristband/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">11. Recharging card:</h3><p>It's horrible when we want to be up and doing - but realise we need to recharge, and so make the hard decision to recharge....and then loved ones mistaken 'encourage' us to do more instead. This card lets people know simply and clearly what we are doing.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikXbCCevN36iCFlufQ6lq1hW7SSSA9SVrSdRd3lI9as2gBE7C1Boi-7ywa0E8bzU8ICnK0uqv45sJwRLzXLhXYYLfyhb4A3980czuUD0AUmkDS1sNu6APV5RWD9dxOoTttPUwFq62nC7oCx8SNBm1qBP8HIRlNjrupxNwJ8GtZ3JLH6V_uN1SnHsiA20M/s1280/photo_2024-03-01_10-58-14.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikXbCCevN36iCFlufQ6lq1hW7SSSA9SVrSdRd3lI9as2gBE7C1Boi-7ywa0E8bzU8ICnK0uqv45sJwRLzXLhXYYLfyhb4A3980czuUD0AUmkDS1sNu6APV5RWD9dxOoTttPUwFq62nC7oCx8SNBm1qBP8HIRlNjrupxNwJ8GtZ3JLH6V_uN1SnHsiA20M/s320/photo_2024-03-01_10-58-14.jpg" width="320" /></a></div><br /><p><br /></p><p><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/recharging-card/" target="_blank">https://stickmancommunications.co.uk/product/recharging-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/recharging-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/recharging-card-plain/</a></p><p style="text-align: center;">-------------------------------------------------</p><h3 style="text-align: left;">12. Sensory Overload card:</h3><p>Sensory overload is hugely debilitating, and people trying to help can inadvertently make things worse by asking questions, or attempting to give a hug - creating even more sensory input for our overloaded brain to cope with - and so this card was born. The back of this card is blank so you can write on your specific triggers or needs.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqAunekPuVppHjMuVKHumHnHokVdioZ2Qdj1yE_I9Nc-x4xzaF8SobVWLLWUJTaC0hC2xvInRRJ5GQdx0sPuUeR61zzR-ZLvOuv6GGC_ttnxtkHaoG_hHgU4GgC7oJmy1Ts1uTg1hr9bsu7LSn9R71Kc3BpnYMAndVKkUwGgl5sFP4srLRWm-OPb7EuY4/s1000/CC017%20plain%20sensory%20overload%202023%2007%2022_6.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="1000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqAunekPuVppHjMuVKHumHnHokVdioZ2Qdj1yE_I9Nc-x4xzaF8SobVWLLWUJTaC0hC2xvInRRJ5GQdx0sPuUeR61zzR-ZLvOuv6GGC_ttnxtkHaoG_hHgU4GgC7oJmy1Ts1uTg1hr9bsu7LSn9R71Kc3BpnYMAndVKkUwGgl5sFP4srLRWm-OPb7EuY4/s320/CC017%20plain%20sensory%20overload%202023%2007%2022_6.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: left;"><b><br /></b></div><div class="separator" style="clear: both; text-align: left;"><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</div><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/sensory-overload-card/" target="_blank">https://stickmancommunications.co.uk/product/sensory-overload-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/sensory-overload-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/sensory-overload-card-plain/</a></p><h3><p style="font-size: medium; font-weight: 400; text-align: center;">-------------------------------------------------</p></h3><h3>13. Go Away card:</h3><div class="separator" style="clear: both; text-align: left;">Sometimes symptoms mean we just need to be left alone. We are OK. But asking someone who cares to go away can cause offence or upset, that we don't have the energy to deal with. This card offers a cheerful, calm, non-confrontational way to tell them.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXnGI_lBxkZ9mUMQcA8UyNQPgPgFw4OaezcaRkRBq56LRKou0wionUXFmGv8v-k3rECAjCDfYJ9llEdi90P2P5UueGLKBa5K08CynMG16FB0Tkb5hm_q-LSOAfvKuzNsfYs1N1m25t8iyoUQsOClcIto0FoEqfklhvUKRSTjVeIxBBRPKrjoZuuJad6hM/s1000/CC033-N%20plain%20leave%20me%20alone%202023%2007%2022_10.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="1000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXnGI_lBxkZ9mUMQcA8UyNQPgPgFw4OaezcaRkRBq56LRKou0wionUXFmGv8v-k3rECAjCDfYJ9llEdi90P2P5UueGLKBa5K08CynMG16FB0Tkb5hm_q-LSOAfvKuzNsfYs1N1m25t8iyoUQsOClcIto0FoEqfklhvUKRSTjVeIxBBRPKrjoZuuJad6hM/s320/CC033-N%20plain%20leave%20me%20alone%202023%2007%2022_10.png" width="320" /></a></div><p><b>Price</b>: £1.90 + VAT (Note: Disability VAT exemption is available on this product)</p><p><b>Striped border version</b>: <a href="https://stickmancommunications.co.uk/product/go-away-card/" target="_blank">https://stickmancommunications.co.uk/product/go-away-card/</a></p><p><b>Plain border version</b>: <a href="https://stickmancommunications.co.uk/product/go-away-card-plain/" target="_blank">https://stickmancommunications.co.uk/product/go-away-card-plain/</a></p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-8599125058833081532024-02-20T12:06:00.002+00:002024-02-20T12:06:41.388+00:00Disability and decisions in advance<div><p>Decisions in advance are key to my self management. Brain fog, fatigue and overhwelm can make decisions stressful, draining - and even impossible. I can't process the options, key factors, consequences etc - and decision paralysis sets in. So I've learned, where possible to make decisions in advance - with suitable provisos (usually: unless I'm well enough to choose to do something else).</p><p>It creates a safety net that requires no weighing up of options, no considering the consequences, just reaching for my pre-prepared decisions. Saving me mental energy on busy or exhausted days, and providing a way for me to function and achieve things and look after myself even when my symptoms mean I can't make good decisions in the moment. If I find myself unexpectedly above the level of functioning I thought I'd have, and am well enough to make decisions - I can do so and override the defaults.</p><p>Things I routinely decide in advance include:</p><p>- What to wear. (including checking the weather forecast - POTS and temperature control means I must NOT wear a lovely soft warm hoodie when it's above 18 degrees outside!)</p><p>- What to eat.</p><p>- Activity options (list a range of things likely to be within expected capacity, so I can choose 1 or 2 on the day)</p><p>- Realistic work or housework related tasks.</p><p>- Whether to shower or use babywipes.</p><p>- What level of phsyiotherapy to attempt.</p><p><br /></p><p>I even have pre-made decisions around certain symptoms:</p><p>- A numb face (which is associated with pushing way past my PoTS limits) = lie down immediately.</p><p>- Saying to myself "come on! just concentrate! Focus!" = take some complete brain-rest time, and return to the task when it feels managable again.</p><p>As I've learned how my body reacts to things decisions in advance have become become more and more useful for health management - as well as reducing the cognitive load of busy days. </p><p>In the video below I talk through in a bit more detail about using decisions in advance to help me manage my health - with #PoTS, #Hypermobility and some kind of #Neurodivergence. Different things will work for different people, but hopefully sharing this will be useful to someone. </p></div><div><br /></div><iframe frameborder="0" height="360" src="https://youtube.com/embed/6OvNkw47Yr0?si=3ZSSMdv38hr79Bj3" width="480"></iframe>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-35598676564392517792024-02-01T17:17:00.004+00:002024-02-01T17:17:39.284+00:00The under-rated achievement of NOT doing the thing<p> I sit here writing this blog with a huge feeling of accomplishment...for NOT doing an important task. One that could be essential for my business.</p><p>In average life, this makes little sense.</p><p>In a life of limited energy, needing constant strategic planning and compromise - it's a massive deal.</p><p>With limited energy, difficult decisions have to be made - and the biggest factor is my capacity. Sometimes it's a good idea to do things above capacity (sometimes for practical reasons, sometimes physical, emotional or mental health reasons) - but that is a topic for another day. Other times the best choice is to manage activity to within capacity - and that is where I'm at today. Not only that, but I am also in the 'danger zone' for accidentally doing too much.</p><p>This week has been what I call 'Splat week'. I am hormonal and on my period, and the knock on effect on my hypermobility and PoTS is some pretty extreme pain, fatigue, and overall wobbliness. I spend a couple of days going downhill, a couple of days at complete splat, then a couple of days emerging back to my usual level of symptoms and capacity.</p><p>During yesterday's splat I thought of doing a SM reel of some of my coping strategies for my hormonal week. A combination of the validation I wish I'd had in my early days of disability that yes, I really do get worse at that time of each month (rather than thinking I was imagining it) and some of the things I've learned that help me through it.</p><p>Today I am on day 1 of emerging. I feel SO much better. A sense of a burden lifted and function returning. I feel so much better than I did, that I forget how far away from my usual level I still am - creating a danger zone where I *can* do things - but overdoing it and causing a crash is really really easy. </p><p>So when I woke up and thought "Oh, I could make that reel today" I double checked that thought - analysing the facts not just the feeling. </p><p>Key facts: </p><p></p><ul style="text-align: left;"><li>Talking is a major symptom trigger/energy drain. </li><li>Pushing now will deplete tomorrow. </li><li>I'm still really wobbly and had to use my wheelchair to get to the kitchen to make breakfast.</li><li>I have a really important thing on Saturday - if I crash now I probably won't recover in time. </li><li>Waiting a few more days won't make a big difference to the business.</li><li>If I keep recharging I'll be able to do it with minimal hangover in a few days time.</li></ul><p></p><p>Unsurprisingly the conclusion was: No. I am not ready. </p><p>So I may plan some of the points I wish to make in the reel, but no filming. No practicing. No properly working on it.</p><p>Stepping back and making the best decision for the long term is a huge achievement.</p><p>It is an achievement that takes much more work than 'pushing through'. It is much better for my health and long term capacity. But at a general society level, it isn't accepted - easily labelled as giving in, playing the patient role, being lazy etc. And these labels can be raised by our own brains too.</p><p>So here's to everyone else who needs to say no. I see you. I see the good decision behind the No. I see the courage it's taken. And I celebrate your achievement.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj-Hhvv3vx_YKYUwzQlwGingpp_ML8lvioLPPEWnt74XRUoJWiUokZ_JwmuGkOzRfEpEwidfQx4KfFIVGuRP35FjGsByW8tBb-K6dVxOju04dWQc1gxZ7malSV4G6YtWGL2RYAvzllRtGstq_OTC8QXy86rgfrZe9m3VuL39-hMBRgULJNStpNz_uajqg/s800/no%20is%20good_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Stickman with handheld scales - one side 'cost' (with a large purple sack on it of 'symptoms, worsening health, inability to do other tasks, energy drain. And the other side "Benefit" - with a very small, green bag that is very light. The stickman says "No". Unknown reply: "Oh, but don’t give up! You must push through! Don’t fill the patient roll! Don’t let your condition define you! Don’t be lazy!" Stickman says: " Still No. Because it is a wise decision."" border="0" data-original-height="600" data-original-width="800" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj-Hhvv3vx_YKYUwzQlwGingpp_ML8lvioLPPEWnt74XRUoJWiUokZ_JwmuGkOzRfEpEwidfQx4KfFIVGuRP35FjGsByW8tBb-K6dVxOju04dWQc1gxZ7malSV4G6YtWGL2RYAvzllRtGstq_OTC8QXy86rgfrZe9m3VuL39-hMBRgULJNStpNz_uajqg/w400-h300/no%20is%20good_1.jpg" width="400" /></a></div><br /><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com1tag:blogger.com,1999:blog-8572102937612408267.post-22443736443367238642024-01-01T11:09:00.001+00:002024-01-01T11:09:43.068+00:00Disability and my goals for 2024<p>(Please note that this blog is personal and about my own experience and perspective - it will definitely not apply to all disabled people.) </p><p>Not long ago someone asked me what my long term goals were - both personal and business.</p><p>The question left me unexpectedly lost for words - I couldn't answer it. It made me realise I don't have any traditional goals except 'Manage my health as best as I can' - but even that has no specific end point. No specific 'if I can do this, I have succeeded'.</p><p>Does this mean I intend to just drift through the next year not doing anything? No. </p><p>I have a list of practical things it would be nice to achieve - but these are a list of 'potential options' to be used if the opportunity arises at a time where it is possible and practical, or if it seems like the best decision.</p><p></p><div><br /></div><div>Things like:</div><div><ul style="text-align: left;"><li>Grow Stickman Communications</li><li>Create new products</li><li>Take my stickmen to some of the big disability events</li><li>Run a series webinars on communication around health</li><li>Run a series of in person evens on communication around health</li><li>Run some events around accessibility for small businesses</li><li>Increase the number of hours I can work in a week</li><li>Improve my swallowing</li><li>Improve my fitness</li><li>Do some home repairs/improvements</li><li>Spend more time with friends</li></ul><div>etc.</div></div><div><br /></div><div>So why don't I make them goals?</div><div><br /></div><div>Because I know myself. </div><div><br /></div><div>If I set myself a goal, I will go all out to achieve it. </div><div><br /></div><div>Which sounds good....except that with very limited energy that would mean reducing the energy spent on other things. And with unpredictable health that is affected by everything from the weather to how much I talk and sleep, what I eat, how long I am upright etc - my time and available energy is unknown and hugely variable. I have to chose what I spend that precious energy on - I can't add things in, I have to make either / or decisions. </div><div><br /></div><div>In addition, I live on my own so I can't hand over daily living tasks for someone else to look after while I meet that goal, to free up extra energy/time.</div><div><br /></div><div>So if I set my goal as running a webinar series - I would almost certainly achieve it. But at what cost to my health? Pushing through my limits to achieve it would mean a negative affect on my health that lasts months. Any positive impact on my business would be lost due to the months of reduced capacity that would follow. So while I would technically have achieved my goal - I would also have lost a lot of things that I consider too valuable to lose, and the achievement would have no long term positive effect. It would, in fact, be worthless to me. Worthless and meaningless.</div><div><br /></div><div>For anyone who thinks this is catastrophizing, it's not. It's something I've experienced in the past, and based on my current health would almost certainly happen if I tried it again now. If my health improves a lot then I'd be up for trying it again - which is why it's on my 'possible options'. I am currently thinking to try running one or two webinars during the year as I've improved enough over the past year to think a few individual webinars should be doable - then I'll see how I react to that and make decisions from there. But at present a committing to a series just isn't wise.</div><div><br /></div><div>And when it comes to health goals, there is only so much within my control.</div><div>For example, I have a goal to do my best to manage my health effectively. </div><div><br /></div><div>The effect of this <i>might </i>be that my health is better by the end of the year. But it might not. There are so many external factors beyond my control that will impact my health and ability to function (anything from catching COVID to a summer heatwave or family stressors) - why would I set myself a goal where external factors are highly likely to dictate failure? </div><div><br /></div><div>So instead, my goal is to be able to look back on 2024 and say:</div><div>- I did my best with what I had</div><div>- I made some good memories</div><div>- I gave other people some good memories</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdoWeifcG1sKmlM-TabsDLpzn3MC7DuvrmNSkKJDI630Lcnri-tyQE10iFEpr6bjsesMKSZ3iGUI6GhiwgwN7E9dZ1L6zn6FSMDFGPR_gBUTBI6BXeV6JMGgml6m24DZ2hvCAzK9i6HUUKQ6QUrxVDvejwKWoEZzId8YEuPUx-i4IwqplNexUbphI16QQ/s600/2024_1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="2 stickmen raising wine glasses in a toast - one in a wheelchair, one poorly in bed. Above them says "To a 2024 I can look back on and say: I did my best, I made some good memories, I gave some good memories."" border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdoWeifcG1sKmlM-TabsDLpzn3MC7DuvrmNSkKJDI630Lcnri-tyQE10iFEpr6bjsesMKSZ3iGUI6GhiwgwN7E9dZ1L6zn6FSMDFGPR_gBUTBI6BXeV6JMGgml6m24DZ2hvCAzK9i6HUUKQ6QUrxVDvejwKWoEZzId8YEuPUx-i4IwqplNexUbphI16QQ/w320-h320/2024_1.png" width="320" /></a></div><br /><div><br /></div><div><br /></div><div><br /></div><p></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com2tag:blogger.com,1999:blog-8572102937612408267.post-71251414562102525862023-10-11T10:31:00.000+01:002023-10-11T10:31:35.802+01:00Answering 'How are you?' when you have a variable disability<p>This blog is about the times when I want or need the other person to understand my condition - it's not about the polite non-questions society asks but doesn't really want the answer to.</p><p>I have PoTS and hypermobility - between them causing a huge range of variable, potentially disabling symptoms, including pain or instability in any joints, issues with digestion and swallowing, fatigue, brain fog, heart rate, coordination and speech. And probably more.</p><p>For me, the "How are you?" questions from people whom I want to understand me, fall into 3 main categories: Glaringly obvious/With context/Without context.</p><h3 style="text-align: left;">Glaringly Obvious (to me)</h3><p></p><div style="text-align: left;">This is when at the time of the question I have one symptom (and only one) that is massively impacting me, and drowning out the other symptoms. Perhaps severe pain in one area. Or really struggling with my heart rate. Or really struggling to speak. Other symptoms are minor in comparison, so my reply will relate to that one symptom. For example "My SIJ is being a nightmare, but otherwise OK" Or I might have the relevant keyring card to hand already (like one about being currently non-verbal) </div><p></p><h3 style="text-align: left;"><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigQf49gg3ZA33f8F0apQePAolLjolE_DubTNEj5esb5JG_e4_34jZS64doIrdHnHoK75soweqGVE8_ks0bByjHLvUibAXybe31ekIFz2iS25fdBxYPmH7VjNGWX8t4yxQZp7LM-HzMGWTX8x8bAh-HyW_BDZhSed7PML13luVi06EpZTXBMS0LMoThSF4/s1000/CC198%20plain%20non%20verbal%20card%202022%2003%2021.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="card with plain blue border and stickman with mouth covered by tape. text "I am currently non verbal. I can understand - I just can't speak. I may respond with a gesture instead. I will speak when I am able to. The most helpful thing you can do is let me be involved without trying to make me talk." border="0" data-original-height="750" data-original-width="1000" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigQf49gg3ZA33f8F0apQePAolLjolE_DubTNEj5esb5JG_e4_34jZS64doIrdHnHoK75soweqGVE8_ks0bByjHLvUibAXybe31ekIFz2iS25fdBxYPmH7VjNGWX8t4yxQZp7LM-HzMGWTX8x8bAh-HyW_BDZhSed7PML13luVi06EpZTXBMS0LMoThSF4/w268-h201/CC198%20plain%20non%20verbal%20card%202022%2003%2021.png" width="268" /></a></div></h3><h3 style="text-align: left;"><br /></h3><h3 style="text-align: left;">With context</h3><p>This is where I will be interacting with someone in a specific way. Then my answer will relate only to the specific symptoms that will impact our interaction.</p><h4 style="text-align: left;">For example:</h4><p>If I'm doing a seminar/webinar - I'll answer based on my speech and concentration ability.</p><p>If we're going to be going out for a meal - I'll answer based on speech and swallowing issues.</p><p>If we're going shopping - I'll answer based on my self propelling capacity, and decision making ability.</p><p>If we're going to sit through a program/movie - I'll answer based on my current sitting capacity/fidget needs.</p><p>These answers will often mix symptoms with assistance that might be needed. For example "My arms are doing pretty well, but I might need a hand up steep slopes. And my decisions are going to be slow cos I'm a bit foggy".</p><h3 style="text-align: left;">Without context</h3><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2U-mkekttfsgmkqp8tecxhq6492IwRol-L4BC_IcZvjxf3Sd3EBGNGqtkoucS6xgk5LG4nP1kLlbdhncqpfiODG9TZsNh5ic4NjUFyKqHDGNehyphenhyphenyrdx1EYeMQhVnj76aivCCH7lJh_uiO85jgOCxhxutU2Ob_PyTOqDREvYIYoaOOXSbdVWJjbqsqDXw/s940/too%20many%20options.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Top half or a puzzled womans face, with lots of wiggly arrows coming out of her head in a mess." border="0" data-original-height="788" data-original-width="940" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2U-mkekttfsgmkqp8tecxhq6492IwRol-L4BC_IcZvjxf3Sd3EBGNGqtkoucS6xgk5LG4nP1kLlbdhncqpfiODG9TZsNh5ic4NjUFyKqHDGNehyphenhyphenyrdx1EYeMQhVnj76aivCCH7lJh_uiO85jgOCxhxutU2Ob_PyTOqDREvYIYoaOOXSbdVWJjbqsqDXw/w320-h268/too%20many%20options.png" width="320" /></a></div>This is where there is no specific purpose to our interaction, and I have no one symptom that is swamping the rest (i.e. glaringly obvious) - just a big mix of dozens of symptoms, any of which could become relevant depending on what I do.<p></p><p>In these situations the context is too broad. I can't reply with relevant symptoms and needs because the possible scenarios that might arise are too varied. Anything could be relevant.</p><p>My brain will start to plan an answer, and scroll through current symptoms, get overwhelmed by the complexity and shut down. Like so there are no words in my head to answer with. It's just noped-out. The only responses I can give are then a noise (sometimes a single word) and a gesture. </p><p>Fortunately a handful of close friends understand me well enough to interpret these well. But many people don't. </p><p>So they think I'm refusing to communicate or being sulky or not recognising that they genuinely care. And I understand that. It can mean that I give better information to a stranger at a webinar than to a friend I meet after church. That's not a measure of whether I want them to understand or whether I appreciate their care - it's about my ability to process the data and form an answer.</p><p>With luck, after I've responded with noise/shrug, my brain will release enough to pick a pre-prepared answer off the shelf. Things like "Well, I'm here, so that's good" or "pretty close to my limits, but it should be ok". </p><p>And then leave it at that until a situation arises that has context. And then I can give them the 'relevant info' answer that the context enables.</p><p>So if I give you a grunt for an answer, it doesn't mean I don't want you to understand: It means that at that moment, in that lack of context, I literally can't give you a proper reply. </p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-59559433167018041242023-08-03T12:42:00.000+01:002023-08-03T17:46:59.707+01:00Self advocacy, accessibility, and a trip to the dentist.<p>Following a dentist appointment, I've been thinking about how much energy has to go into advocating for ourselves in order to gain access to stuff - and how rare it is that an organisation steps up to ensure that access happens without being asked.</p><p>The usual is: </p><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">I say I'm a wheelchair user, and list any other access needs I think are relevant. They promise it is accessible. I turn up and it's not. And the attitude is 'but this is how things are'. So it's up to me to resolve it. I must: </span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">1. Persuade them that the default position isn't accessible for me (whether or not it's accessible to other people). </span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">2. Come up with multiple options for ways that it could be made accessible.</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">3. Discuss the options with the organisation to find the most feasible solution. </span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">4. Resolve any issues with the most feasible option, and persuade them to actually DO that option (This may include things like offering to complete a risk assessment for the alternative I have suggested - as a retired Environmental Health Practitioner, I'm trained to enforce health and safety, which comes very in handy!). </span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">And repeat. So. Many. Times.</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">(Aactually I have learned a 'cheat' argument that often speeds up the process. I offer to crawl to the lecturn/hotel room/office/up the front steps to the lawyers office. It is AMAZING how quickly they start engaging in solution-finding when they realise that the alternative is the publicity nightmare of 'Disabled woman made to crawl due to inaccessible venue.' This has been much more effective than 'otherwise I can't access it'. Which makes me sad, but still, it works so I use it wherever it's relevant.)</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">Perfection is where I turn up and all relevant staff know exactly what I need and ensure it happens.</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicoeYqYFucG9mPg3dPa-5FFcXTGLygv3YtCpmt28gqzJXL-1Crp6HX296HC-jqbHtRYt_NcIR3dtFYjNl-HWV-e_2lRIYZk1InDWJCse4TMqsT4rm67c0bw-bTsETzEbVav2gyaT71Fr8FV7D_qpiG0op5IrLZXdF71k1yvONRx0NkjfSaxsxzn9lSFGc/s1200/fB%20ads%20v2%20(1).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="628" data-original-width="1200" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicoeYqYFucG9mPg3dPa-5FFcXTGLygv3YtCpmt28gqzJXL-1Crp6HX296HC-jqbHtRYt_NcIR3dtFYjNl-HWV-e_2lRIYZk1InDWJCse4TMqsT4rm67c0bw-bTsETzEbVav2gyaT71Fr8FV7D_qpiG0op5IrLZXdF71k1yvONRx0NkjfSaxsxzn9lSFGc/s320/fB%20ads%20v2%20(1).png" width="320" /></a></div><br /><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">What happened at the dentist was close to perfection - the key thing was that people within the organisation advocated for me. When the one member of staff was out of her depth, others instantly stepped in to resolve it.</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">I turned up to my dentist appointment (I'm a regular, and had also reminded them of my wheelchair use as it was an emergency appt). The surgery has treatment rooms both upstairs and downstairs (no lifts). I turned up, checked in, and was told "If you'd just take a seat up....stairs" - I could see the panic in the her eyes. The 'I don't know what to do or say, but I know I've said something silly, and I don't know the solution!' </span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">As it happens I was seriously brain fogged. I literally had no capacity self advocacy at this unexpected thing (expected conversations were ok, unexpected: not happening). I managed a slightly quizzical 'Um....no?'</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">And this is where it all went right. Her colleague overheard, and immediately stepped in. "It's ok, there's a note in the system, your dentist knows, and she'll be moving downstairs for your appointment, so just stay in this area 'til you are called."</span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text"><br /></span></div><div data-slate-node="element" style="position: relative;"><span data-slate-node="text">
</span></div><div data-slate-fragment="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" data-slate-node="element" style="position: relative;"><span data-slate-node="text">The organisation recognised the issue in a flash, took responsibility, ensured my access happened. I didn't have to fight the system, fight the 'computer says no' approach. Instead, I was given the access I needed. It was heaven. </span></div>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-86397344573411558162023-07-30T17:02:00.007+01:002023-07-30T17:17:01.458+01:00Disability, allies, and race<p> For context: I am disabled. I am white. And I'd very much like non-white people to feel safe around me.</p><p>So, this blog is, for want of a better way of putting it: processing in progress. </p><p>Recently I saw a number of posts about race allyship, including this one:. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeeQRF-hkTGvMvOPS02G4NNQu_w0QRsnXubN50-g-NuaSKVRxQs6r8jmiROFP5XAaOSaZlpaM78I0yP3I1My5DWGy8KL7FTX6I-D1OQ9uSIP8epEQXazKu8J7P3sDymxZtOiTtPZek2HTwLYKT3Odo6Atc1WbOg9NdecUc5_yV3jgDR2wkrzSF2N8BWW8/s585/Screenshot%202023-07-27%20155148%20Ally%20racism.png" style="margin-left: 1em; margin-right: 1em;"><img alt="post from SM platform Spoutible, by Liz N: Dear white people. You are not an ally until a marginalised person tells you that you are. Until such time, stop making the claim." border="0" data-original-height="382" data-original-width="585" height="209" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeeQRF-hkTGvMvOPS02G4NNQu_w0QRsnXubN50-g-NuaSKVRxQs6r8jmiROFP5XAaOSaZlpaM78I0yP3I1My5DWGy8KL7FTX6I-D1OQ9uSIP8epEQXazKu8J7P3sDymxZtOiTtPZek2HTwLYKT3Odo6Atc1WbOg9NdecUc5_yV3jgDR2wkrzSF2N8BWW8/w320-h209/Screenshot%202023-07-27%20155148%20Ally%20racism.png" width="320" /></a></div><br /><p><br /></p><p>The replies were a combination of agreement and 'but they mean well, so that's nice!'</p><p>And it got me thinking....</p><p>As a disabled person, people often offer me help that is unnecessary. Sometimes it's even literally unhelpful - like them holding a door open in such a way I literally can't wheel through it. And sometimes they give 'praise' that is actually kinda insulting (like for sitting drinking a hot chocolate....like...really?)</p><p>Meaning well, or intending to be helpful does <b>not </b>automatically mean that it actually <b>is</b> helpful nor does it automatically have a good effect.</p><p>I get that it hurts when efforts to help are rejected - but the fact is...they are rejected for good reason. And I would guess that offers of help aren't just about the practical 'thing' - but also about conveying 'hey, I'm here for you, I see you, I care about you'. So the 'no thank you' becomes even harder to hear. You did your best to make me feel comfortable, welcomed, supported - and I rejected it.</p><p>But here's the thing. I haven't rejected your support (even if that is what it felt like). I have given you information to enable you to give more appropriate support. Whether I feel safe and supported is not determined by the offer - it's determined by the response to my 'no'. </p><p>The perfect response is 'Ok, let me know if you need anything' - with a friendly smile - and then they continue on with their day (e.g. doing their shopping, or reading something on their phone on the train). Because then I know <b>I have been heard</b>, and that the important factor in the interaction wasn't their emotions (that they felt they'd supported the poor disabled person) but that I could get the support I decided I needed.</p><p>Responses resembling the following will instantly have someone placed in the 'avoid - not supportive' category.</p><p></p><ul style="text-align: left;"><li>Ooh, people like you are always wanting to be super independent!</li><li>But I was only trying to help!</li><li>Don't be so rude!</li><li>Someone's got a chip on their shoulder!</li></ul><p></p><p>(To anyone thinking 'oh, but it doesn't happen that often'...it does. So often that I have multiple pre-planned strategies for attempting to convey the 'no thanks' in a way that might be accepted, and a kind of internal priority list for when energy is low, to help me decide whether it's likely to be less energy to just accept the unwanted/unhelpful help. Any time I get a really good response, it's like a breath of fresh air.)</p><p>But it's not just 'I don't like the reaction to my no' - it goes much deeper. It's about whether I am physically and mentally safe. If my voice is not heard, then I am not safe. My needs will, quite simply, be overridden by the other person's 'need to feel supportive'. And that is scary. On a visceral level. Every instinct will tell me to GET AWAY.</p><p>And....I wonder if this same process/emotional reaction is what happens when it comes to race too - only there I'm on the other side. I'm the one wanting to show support, but being hurt when I feel my support has been rejected. </p><p>If I do or say something by which I want to convey my support, and am told no. The important thing is not my intention. The important thing is my reaction. If I'm told I'm wrong - do I apologise, accept that what I've been told is genuine, and learn? Or do I say 'But I was only trying to help'?</p><p>In my disability experience, I choose who I feel safe near, and who I don't feel safe near. And it is never based on their 'intention'. It is my decision, based on their behaviours.</p><p>So when it comes to me wanting to be supportive of people from other races or cultures, I guess the same rules apply. I don't decide if I am their ally. They decide whether they feel safe around me. It is 100% their decision, and if they don't: I need to look at my behaviour.</p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com2tag:blogger.com,1999:blog-8572102937612408267.post-22765906319702713052023-06-19T10:24:00.001+01:002023-06-19T10:46:22.000+01:00Using my communication cards<p> At the weekend a group of my friends and family from church got together for a BBQ later afternoon, with the aim of staying til late evening - board games on the patio, chatting around campfires, that kind of thing.</p><p>I was invited. No way could I go for the earlier part of the event - it was way too warm for me to be up and about. But after 8 O'clock it was much cooler. I really wanted to go because manageable opportunities to socialise during the summer are very few and far between. But I also had a heat hangover. Fatigue levels fairly high, and although I could enjoy a conversation, my talking ability was very below par. Very slow. </p><p>It would be physically manageable from my wheels, but would I be able to have nice, relaxed social interactions that didn't demand more from me than I was capable of? </p><p>Everyone who will be there knows me - and knows I'm disabled. But with variable symptoms none of them would know my current capacity/limitations/needs without me telling them. And no way I'll cope with that much explaining....but that's what my keyring cards are there for.</p><p>So I decided I'd take my cards and risk it. </p><p>I used the card cover elastic to hold my pack open at my most relevant card, so it would be easy to use, and off I went. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs9esZznkS1QE021UehgxZ1ch88gt_LEARvFbvU_E9bCdsImCNtSDdIL4mh0nxzblCT3i-3kc6mN0BoulQUa-2xyjKZ_tHSwcQihDSPVQcMLtYL6c86Ba3wJJglWm7UJfqDt1E2SpK6PMWBvUXopqt4-Q0ciSIX4vRMWH3N-z6pbm-FOOzpTqlKMtM/s1000/CC088%20difficulty%20speaking%20card%20plain_1.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="White hand holding a laminated card with pale blue border and 2 stickmen chatting over coffee. Text "I find speaking difficult. Please give me time to say what I want to say. I'll let you know if I need help with it."" border="0" data-original-height="750" data-original-width="1000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs9esZznkS1QE021UehgxZ1ch88gt_LEARvFbvU_E9bCdsImCNtSDdIL4mh0nxzblCT3i-3kc6mN0BoulQUa-2xyjKZ_tHSwcQihDSPVQcMLtYL6c86Ba3wJJglWm7UJfqDt1E2SpK6PMWBvUXopqt4-Q0ciSIX4vRMWH3N-z6pbm-FOOzpTqlKMtM/w320-h240/CC088%20difficulty%20speaking%20card%20plain_1.jpg" title="The 'difficulty speaking' card I used." width="320" /></a></div><br /><p>It worked really well. </p><p>With each person I chatted with - whether I approached them or they approached me - I held out the card, they took a moment to read it, and sometimes I followed it up with 'I want to chat, but...I'll be slow'.</p><p>Every single time it was accepted. And acted on. I felt fully included. Nobody hurried or interrupted when I needed to pause. There were also times my grammar was totally wrong, or I said words in the wrong order, or just used key words or gestures instead of sentences. It was all accepted without comment - they understood what I meant. And because they knew I was finding speech difficult, my limitations didn't stress them or worry them. And the result: nice, relaxed social interactions.</p><p>A couple of people even comment how useful the card was, because it meant they knew what to do.</p><p>Admittedly, I do have an awesome circle of friends, but being able to really clearly communicate 'this is where I'm at and what I need' without speaking created the understanding of my 'here and now' that made it accessible. </p><p>I had a lovely evening. I think they did too.</p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-30230143925858591582023-06-10T12:12:00.001+01:002023-06-10T12:12:33.897+01:00Communicating about disability - when there is no shared reference point.Often I blog about self management with the aim of maybe helping someone experiencing something similar. But today I'm writing mainly to non-disabled. To the people trying their best to understand our reality.<div><br />One of the challenging things about communicating with loved ones about hidden disabilities or symptoms is that most will have no concept of what we are trying to say. No shared reference point on which to build understanding. And so the natural thing to do is build their understanding on a different reference point and...we get confusion and misunderstanding. <br /><br />Like me trying to say I can be so fatigued that my legs can't hold me up (wheels only on those days!), and them saying 'I know what you mean, I feel like staying on the sofa after a long day'. 2 completely different things. Like...so different I don't even know where to start explaining it.<br /><br />Severe fatigue doesn't mean 'feeling like you don't want to do things' - it means being unable to.<br /><br />"Ah, but I've seen you say that, and then you do it!" <br /><br />Ok, so I'll rephrase that to "being unable to without significant and severe consequences".<div><br /></div><div>When a healthy person is tired from a long day, but have to get up and do something anyway, the effect is: an unpleasant feeling, a certain amount of grump, and possibly some minor aches and pains. But that's about it.<br /><br />When I'm too exhausted to stand upright, but I have to do something anyway, a burst of adrenaline will temporarily allows me to do it. But you may well not see what happens when that adrenaline surge has faded, by which time I'll almost certainly have retreated to my room or solitude. When my symptoms will be a whole heap worse than before - because energy I didn't actually have - or was reserved for essential functions - has been used up.<br /><br />This will be different for everyone, but for me, the net effect will generally end with me unable to move without shaking with the effort, unable to form a sentence in my head, completely unable to speak, and struggling with basics like swallowing my own saliva. (You can forget trying to eat or drink until I've done some recharging). Hitting this level repeatedly over a few weeks reduces my capacity long term (possibly permanently).</div><div><div><br /></div><div>The two experiences aren't remotely comparable - and in trying to relate by comparing, the actual effect is to make the disabled person feel dismissed, unheard, and disbelieved. It actually prevents understanding and effective support rather than promoting it.</div><div><br /></div><div>So if you are trying to be supportive of a disabled person by relating to their fatigue, and they kinda bite your head off, this is why. Understanding can be reached - but it is a process and learning curve which can only be followed when starting from 'actually, that is so far outside my experience that I don't know how to relate and will try to learn.' Start with believing what the disabled person says about the severity of their symptoms - and build up from there.</div></div></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd4bvUOcn7986v9mL7Ewta6UGPWV1gY0kJqfigcVK9Mmq2RWaB8YbQcOP97jFxq6MgI5EJMuFQQM8A10yCBNGjna5wS0UZ7iYiOfNi1EuxL_PApH8JYHV5Ig-D1F9ezWDMz_M9JII9RWH3PTsMsz0HeBvYOO7sXsL9fdcMRp7zPNE1UBuFWgUSHFHr/s600/fatigue%20cant%20move_1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="stickman with black curly hair and brown skin, exhausted on a sofa. Text "I feel almost Okay. As long as I don't move.". (c) stickman communications ltd 2023" border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd4bvUOcn7986v9mL7Ewta6UGPWV1gY0kJqfigcVK9Mmq2RWaB8YbQcOP97jFxq6MgI5EJMuFQQM8A10yCBNGjna5wS0UZ7iYiOfNi1EuxL_PApH8JYHV5Ig-D1F9ezWDMz_M9JII9RWH3PTsMsz0HeBvYOO7sXsL9fdcMRp7zPNE1UBuFWgUSHFHr/w320-h320/fatigue%20cant%20move_1.png" width="320" /></a></div><br /><div><br /></div>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com5tag:blogger.com,1999:blog-8572102937612408267.post-57425597574829715732023-06-01T10:36:00.009+01:002023-06-01T10:36:59.469+01:00Negative language and hidden disabilitiesToday, on twitter, this appeared in my time line:<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgBOjccYzFD7P6pVcbMi-yXHWVkPlNDAWG7ttG6RBmLcONq-dLFzwjUoHTQOCNOnUEeXTdRbtjvUrMMYvXZ6kzekg2m9401aZ9zDPOyWy0qUnAg5ZoIvwBUjFIZ4WaeWp0A6lgPbB59fdfl5Hjia2UWnIUNBVAzcyL62HDpKLCH-AdhCdK0EGR1xZSP" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="369" data-original-width="680" height="174" src="https://blogger.googleusercontent.com/img/a/AVvXsEgBOjccYzFD7P6pVcbMi-yXHWVkPlNDAWG7ttG6RBmLcONq-dLFzwjUoHTQOCNOnUEeXTdRbtjvUrMMYvXZ6kzekg2m9401aZ9zDPOyWy0qUnAg5ZoIvwBUjFIZ4WaeWp0A6lgPbB59fdfl5Hjia2UWnIUNBVAzcyL62HDpKLCH-AdhCdK0EGR1xZSP" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">To me, this is in equal parts familiar (people trying to be helpful and encouraging) and mind-blowingly ridiculous. A crash, and recovering from a crash are 2 different things. This tweet by FranceyME perfectly illustrates how this 'avoidance of negativity' is beyond useless.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">As regular readers know, I'm all for a positive outlook, and making the most of things, and communicating positively. But here's the thing: bad things happen. Highly unpleasant symptoms happen - for some people life-threatening symptoms happen. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">How can I deal constructively with a bad day if I have spend my time and energy trying to pretend it isn't a bad day? How can I let people around me know I'm struggling if I'm not allowed to use 'negative' words?</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I have bad days, splat days, off-my-head with fatigue days. I crash out. I have overwhelmed days. I have 'can't cope with anything' days. And crying under the duvet days.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">But I also have beautiful days. Constructive days. Well-managed days. Happy days.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">(I say days - but they can also be hours, minutes, or weeks!)</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And sometimes the above can happen simultaneously. I can be so symptomatic I choke on my own saliva until I'm nearly sick - which causes a crash period. And then thoroughly enjoy a Terry Pratchett audiobook while crashed. Safe in the knowledge that I am helping myself recover. Creating a good bad day.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Experiencing something negative does not mean having a negative outlook or attitude. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">For me, the relief of being able to say things like 'ARGH, this is a hormonal splat day, and is a total write-off' is huge. This acknowledgement of a negative is key to my positive experience! Because when I admit it's horrible, I can do what I can to mitigate and cope with the inevitable horribleness. Perhaps fill the day with softness, cosyness, warmth (or cold - depending!). Or lie in bed appreciating the red kites wheeling in the sky outside. Or perhaps it's been a horrible day where I have had to do things despite being too symptomatic to cope - then again, admitting it is horrible allows me to initiate and accept coping strategies, enables me to plan recovery, and helps me understand myself. And communicating the horribleness (alongside the strategies) helps people around me to understand and interact appropriately and constructively - which, lets face it, is incredibly positive!</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">So please, give me space for negative experiences. They are part of my everyday reality. And that's OK.</div><br />Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-81843294585830055762023-04-19T11:28:00.003+01:002023-04-19T11:30:02.107+01:00Changes to our keyring cardsIt looks like we might have to change our keyring cards - but we want to know your views before we make decisions. We probably have a couple of weeks to make the decision (which isn't long).<div><br /></div><div>In the past few weeks, we learned that the cost of producing our keying cards has doubled. Yes, doubled. So to keep the material the same we'd have to increase the price to between <b>£2.50-£3.00 per card!</b></div><div><br /></div><div>BUT</div><div><br /></div><div>There's a new material on the market that we've had some rough samples made up with. These would keep the cost close to previous so if we switch we'll be able to keep the price the same (<b>£1.90 plus VAT per card</b>) but also offer bulk discounts (for example 5-9 cards get 5% off, 10 or more cards get 10% off).</div><h2 style="text-align: left;"><b>Here's some essential information about this potential new material:</b></h2><div>(Note the images and videos here are of sample cards - the positioning, borders etc on the final copies will be adjusted for the different print area on the actual cards.) </div><div><br /></div><div>The new material is called 'Nevertear' and made of white polyester. Designs would be printed directly onto it with no lamination. In the video below the top set is the current laminated cards, and the bottom pack is the new material.</div><div><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/8eTM-haNMSI" width="471" youtube-src-id="8eTM-haNMSI"></iframe></div></div><div><br /></div><div>They are thinner and with a finish that is more 'silk' than the gloss finish of the laminate - and also less 'slippy'.</div><div><br /></div><div>This photo shows the how thick a pack of 4 of the new material is (at the top), and a pack of 4 original material (at the bottom.). I'd say the new ones are about 2/3 the thickness of the original ones.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3wOAKQMCtKL3_-Xm4KHy7CL8rhugdplccyUyL19J8uCXf3n0v6cejh4Z46wWrcHWboX5kFS2Hi4iC4rbj5FvoRibHEIEfopinvxTKE2ioYWAjCLljT_gehkW1FnQ-llxn_DqBfLZmsRtxt0KKRikcokL_4PDSfMJifB6F9kwtCxqBhyfm-rtyAkcy/s4032/IMG_0934.JPEG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3wOAKQMCtKL3_-Xm4KHy7CL8rhugdplccyUyL19J8uCXf3n0v6cejh4Z46wWrcHWboX5kFS2Hi4iC4rbj5FvoRibHEIEfopinvxTKE2ioYWAjCLljT_gehkW1FnQ-llxn_DqBfLZmsRtxt0KKRikcokL_4PDSfMJifB6F9kwtCxqBhyfm-rtyAkcy/s320/IMG_0934.JPEG" width="240" /></a></div><br /><div>They are more flexible - this video shows how much easier they bend - but they also bounce back.</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/KiO6iATJxvk" width="490" youtube-src-id="KiO6iATJxvk"></iframe></div><br /><div><br /></div><div>They work very nicely with the new keyring card covers and dividers (as well as the other accessories we have).</div><div><br /></div><div>The size would be exactly the same as the laminate on the original cards - with the same rounded corners. (80x110mm). So they can be used alongside laminated cards in a pack. The photo below shows 2 sample cards added into my pack of original style cards</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvx--uUbMEQnDR_DqQPJNx2pfHoAMZ7k2Yunuvw_iNIxt8Zr9aY2Fp69wj4bojGmhVskzCIXTV1rRc6DuONSfGa7tsRU_-gNl2LKhmRjlhkgiXqW0JNeDtruYzsCcdMJLUIUgefSHriIsH5t98ZI0-Uwi5hiRiJB4KZebdJdnv294wsf21NuysIOCd/s4032/IMG_0933.JPEG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvx--uUbMEQnDR_DqQPJNx2pfHoAMZ7k2Yunuvw_iNIxt8Zr9aY2Fp69wj4bojGmhVskzCIXTV1rRc6DuONSfGa7tsRU_-gNl2LKhmRjlhkgiXqW0JNeDtruYzsCcdMJLUIUgefSHriIsH5t98ZI0-Uwi5hiRiJB4KZebdJdnv294wsf21NuysIOCd/s320/IMG_0933.JPEG" width="240" /></a></div><br /><div><br /></div><div>This material is often used in commercial kitchens so the ink is fully waterproof too. I tried scratching the ink with my nails and keys - it didn't damage the ink. But if they are scraped by a sharp end of a split ring when putting them onto the keyring it can leave scratches. So we would tweak the printing slightly to leave a white space around the keyring hole so they don't get scratched up - something like this:</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzVIfGwU-OxbvkwupyUQSvpBgpYMSz8CFxMsEYKPa4Oa4HozeXFfmdAeHUPQLBSQ7OLwEeInVIph6D4ZiwszZHTQ_IC8naYd-YPgg9Iu3nAyYOR7KMdo8UhlfxrHeA_LXb7eRgameu-YSdzKSU79lTJTaS-60feXtjH0nvhqjsZOoh-pFCRiJU_dW6/s600/Design%20consultation%20new%20material_1.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzVIfGwU-OxbvkwupyUQSvpBgpYMSz8CFxMsEYKPa4Oa4HozeXFfmdAeHUPQLBSQ7OLwEeInVIph6D4ZiwszZHTQ_IC8naYd-YPgg9Iu3nAyYOR7KMdo8UhlfxrHeA_LXb7eRgameu-YSdzKSU79lTJTaS-60feXtjH0nvhqjsZOoh-pFCRiJU_dW6/s320/Design%20consultation%20new%20material_1.png" width="320" /></a></div><br /><div><br /></div><div><br /></div><div>If this material had been available when we started printing these, I would have chosen it. But it wasn't.</div><div><br /></div><div>If we move over to the new material now it will mean we replace cards in the new material when they run out - so it could well mean around 3 years of selling a mix of the two styles before we switch completely. </div><div>So they key questions are: </div><div><ol style="text-align: left;"><li><b>Would you prefer the new material at current prices, or continuing with the current laminate and increasing the price from £1.90 plus VAT per card to ££2.50-£3.00? </b></li><li><b>Would you be OK with having a mix of laminate and the new materials within your pack?</b></li></ol></div><div><br /></div>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com13tag:blogger.com,1999:blog-8572102937612408267.post-26148395454534132552023-04-07T10:45:00.002+01:002023-04-07T10:45:17.582+01:00The hardest phase of recharging?<p>Please note that this is my personal experience. People will have different experiences. This pattern may not be applicable to, for example, a parent of young children. Or for fatigue with different causes/profiles. </p><p>Throughout the past decade of living with disabling levels of fatigue from several causes (hypermobility and autonomic dysfunction), I have periodically had times where I've had to push beyond my pacing boundaries for several months due to external factors. This makes my health go steadily down hill, then once the external factor is gone, recovery for me seems to have a fairly consistent pattern:</p><p>1. Crash phase: External factor stops - the pressure is off, so I crash out. Hibernation and snacking is pretty much all I can do. But a couple of weeks/month of this and I start to improve.</p><p>2. Honeymoon phase: With the memory of both the crash phase, and the long period of increasing exhaustion before it, even the ability to sit up and be able to think, have a short conversation without being utterly drained, or be able to watch a TV show and enjoy it are beautiful beyond measure. During this phase I make the decision to be off work - so I have nothing on my 'should do' list. And each day I do less than I have capacity to do - which allows me to recharge a little more each day. And I can choose to do things - maybe even go on an outing, because all other responsibilities have been postponed.</p><p>But I can't do that indefinitely, so:</p><p>3. Return to 'basic duties' (albeit reduced) - work, housework, showering, etc. (And yes, my house does get in a right state during the first two phases!)</p><p>4. Return to 'daily life' - socialising is added back in, and full work duties return. At this stage I'm almost certainly not 'fully recovered', so 'daily life' is different to before I pushed my boundaries, but it is a pattern of living that should be sustainable. And will hopefully allow a slight upward trend in my capacity, and I'd hope in a year or two to be back where I was before I started the downhill cycle (although that's far from guaranteed).</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKdxGGzVnDZC3m7vhM_jMsAeXiohY1eSwc7X24UXsXPhalWRhrcuMQqCT0NBcgEcS88I3ESZQiVc9ujMAjA6zX6DI9FvCO0SWS-DKfieP4qJ-ib0KUqzKCWyQWo2pvkWm6bXeH05ZPaPmxtJVPF1u2nM5Bgfoz7v6l7W-1AtE3VJ5PY6KIuElPAaqp/s600/exhausted%20thinking%20stickman_1.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKdxGGzVnDZC3m7vhM_jMsAeXiohY1eSwc7X24UXsXPhalWRhrcuMQqCT0NBcgEcS88I3ESZQiVc9ujMAjA6zX6DI9FvCO0SWS-DKfieP4qJ-ib0KUqzKCWyQWo2pvkWm6bXeH05ZPaPmxtJVPF1u2nM5Bgfoz7v6l7W-1AtE3VJ5PY6KIuElPAaqp/s320/exhausted%20thinking%20stickman_1.png" width="320" /></a></div><p>Stages 3 and 4 are HARD. I'm ready to add things back in, but still need to be really gentle on myself. Only limits have changed, and the effects of overstepping those limits can take a few days to show - creating a bit of a rollercoaster of unknowns. So my "I think this should be within capacity" decisions are almost always wrong. I'm left exhausted. It feels like it's set my recovery back - and I have to back off for a few days then try again with a different approach and better understanding of and respect for where my health is <i>actually </i>at. After a while I get better at thinking "I think I will cope with this, but actually I'm going to try half the time, increase wheelchair use, and make sure I have several periods where I don't talk" etc.</p><p>Another thing that makes it hard is that I feel SO much better but also SO far under par. If you ask me how I'm doing at stage 3 or 4 I'm likely to say 'marvelously' - because in comparison to how I was, this is absolutely true. However, in comparison to where my baseline was before I went downhill, my health is actually pretty rubbish. So emotionally it's a strange position to be in - it makes communicating about my status when friends ask much harder too. Having had a number of very confused interactions, I've settled on "In comparison to where I was a few months ago, marvelous, But I still have a long way to go before my base line is where it used to be."</p><p>So...not really sure whether other people can relate to this, but thought I'd share it, just in case you do.</p><p><br /></p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com2tag:blogger.com,1999:blog-8572102937612408267.post-57875744154585780392023-03-12T12:10:00.003+00:002023-03-12T12:10:58.529+00:00Dissociation Cards consultation<p>We've had a number of requests for cards that cover dissociation. We haven't managed to cover all types yet, but here are 3 drafts, covering derealisation, depersonalisation, and dissociative amnesia.</p>We'd love your feedback before we finalise these, whether you are someone who might use it, or be shown it.<br /><ul style="text-align: left;"><li>Would you find this helpful?</li><li>Is the information clear?</li><li>Are any key points missing?</li><li>Do you have any improvements to suggest?</li></ul><div>You can send replies via email, by commenting on this post, or by commenting on the social media post where I've shared this on social media. If you would like to keep your feedback confidential, please comment on this blog, and write CONFIDENTIAL in capital letters at the start - when I manually approve blog comments, I will ensure that all starting CONFIDENTIAL are not published.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5_bzK-Mw1ziCJ2yaM2UIjLWXypo3qtC1NsAZnmyrS0_HJb0rT_2OpiXPG7iuLb9JBG2KW_zaNoW0h-JE_t1igjVmX0kSmxZqA5dIk9wfRlxcY_M1907W6pICWDSoIiM8g7jaX_DMrctJhY5NXwSdW3ZPzv4ZFBM9PfuK7x6VC3vsT7V-LzB29T5nx/s600/Design%20consultation%20images%202_1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="2 draft cards with purple borders. Please give feedback by 15th March 2023. Card 1: DerealisationNote: both cards will also be available with striped borders. Sometimes I experience derealisation where I feel disconnected from what is happening around me - as if I’m watching a movie, or there’s fog or glass between me and reality. Objects and colours may seem distorted or alien. When this happens, I may look like I am zoning out, lose track of time and have reduced awareness of what is happening around me. I can't control when this happens. It can make life extra challenging. Please be patient with me. Please see the back of this card for things that help/more info. With stickman in a bubble. Card 2: Sometimes I experience derealisation where I feel disconnected from what is happening around me - as if I’m watching a movie, or there’s fog or glass between me and reality. Objects and colours may seem distorted or alien. When this happens, I may look like I am zoning out, lose track of time and have reduced awareness of what is happening around me. I can't control when this happens. It can make life extra challenging. Please be patient with me. Please see the back of this card for things that help/more info. With image of stickman with dotted lines for it's body and limbs." border="0" data-original-height="600" data-original-width="600" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5_bzK-Mw1ziCJ2yaM2UIjLWXypo3qtC1NsAZnmyrS0_HJb0rT_2OpiXPG7iuLb9JBG2KW_zaNoW0h-JE_t1igjVmX0kSmxZqA5dIk9wfRlxcY_M1907W6pICWDSoIiM8g7jaX_DMrctJhY5NXwSdW3ZPzv4ZFBM9PfuK7x6VC3vsT7V-LzB29T5nx/s16000/Design%20consultation%20images%202_1.png" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIVceOrOLdwt1vu_Lpu4-4pEFCLYRudyB65Qn4dijevwrfc-hab75yHgUgHhumEOQbC7bHRIJMcr36FCCtN1CX3rg1wihFRj9AMr5lHuP9JxfmCf2_x2q2Ry0cOc8mG_P-vQJGXzsgMXt_fa0mTAwKFmUvOAN5tP-szobdoYiQPjfp-9wXYKwHj9HC/s600/Design%20consultation%20images%202_2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Card consultation. Please give feedback or suggestions for improvement by 15th March 2023. Note: cards will be also be available with striped borders. Laminated card with purple border. Text: I have dissociative amnesia. I have gaps in my memory which can be anything from seconds to years. I may have no memory of people I’ve met or things I’ve done. I may also have episodes where I can’t remember basic information about myself - including my name, or forget how to do things I can usually do easily. This can be disorientating, frustrating, embarrassing, and scary. I can't control when it happens. Please be patient. Please the back of this card for things that help me. With a puzzled stickman." border="0" data-original-height="600" data-original-width="600" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIVceOrOLdwt1vu_Lpu4-4pEFCLYRudyB65Qn4dijevwrfc-hab75yHgUgHhumEOQbC7bHRIJMcr36FCCtN1CX3rg1wihFRj9AMr5lHuP9JxfmCf2_x2q2Ry0cOc8mG_P-vQJGXzsgMXt_fa0mTAwKFmUvOAN5tP-szobdoYiQPjfp-9wXYKwHj9HC/s16000/Design%20consultation%20images%202_2.png" /></a></div><br /><div><br /></div><div><br /></div><div>We also have a card in progress on the 5,4,3,2,1 grounding technique (5 things you can see etc). Following initial social media consultation we will be editing it to make the order clearer - if you would like to see it, you can find it on our timeline on LinkedIn, Facebook, Twitter, and Instagram. Posted on the 10th March.</div>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-31953588451436600742023-03-01T10:09:00.000+00:002023-03-01T10:09:14.395+00:00But "You don't *Really* need a wheelchair, do you?"<p>Many wheelchair users use a wheelchair sometimes - and walk other times. This can be hard for people to get their head around - and it's not unusual for even people who see this kind of use to say things like "but you don't really *<b>need</b>* a wheelchair do you".</p><p>So I thought I'd share a few relevant moments from my day yesterday.</p><p>My usual wheelchair usage pattern is wheels when out and about (with brief moments of walking if safe), but feet as much as possible in the house, because walking where practical/possible helps with my long term condition management.</p><p>Yesterday my symptom levels were moderate-to-high (an improvement on the previous day's high symptom levels that necessitated doing little beyond lying still and listening to audiobooks.)</p><p>So, I'd been resting in bed and decided I needed the loo - part of me thought using a wheelchair would be wise, but I decided no - it's less than 5metres from my bed to the toilet, with 2 doorframes between to hold for support.</p><p></p><div class="separator" style="clear: both; text-align: right;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaawADkt05H4Hsl8HgLee8loWnH1Juqj899RqVwuu1v4sXC2AI1Cpvxwid3jZvLFfVAdrfukWGj50jao_4g_sXd9xsRevZTdsi4D0ZXomBP1uiRlyKdToIzzJWtUkPuDZ4Er5n0ByoE3ToBu6l3Hu1ZmJveZlPSefn8ejinRpE7E6zcSxOIqU-PPgm/s1748/User%20photos.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="white woman with brown hair curled up in the yoga 'child pose'" border="0" data-original-height="1240" data-original-width="1748" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaawADkt05H4Hsl8HgLee8loWnH1Juqj899RqVwuu1v4sXC2AI1Cpvxwid3jZvLFfVAdrfukWGj50jao_4g_sXd9xsRevZTdsi4D0ZXomBP1uiRlyKdToIzzJWtUkPuDZ4Er5n0ByoE3ToBu6l3Hu1ZmJveZlPSefn8ejinRpE7E6zcSxOIqU-PPgm/w320-h227/User%20photos.png" width="320" /></a></div><br />I made it 2m. Just past my wheelchair, and pre-syncope hit - 'near-fainting' where #PoTS means my blood doesn't circulate well enough to my brain so I go all weak and flollopy.) I recognised the feeling as it escalates over a second or two, so was able to fold myself safely into kneeling on the floor. Half way between bed and toilet. Just waiting. Waiting for symptoms to pass. Initially with my head on the floor (like the 'child pose' in yoga), and then kneeling upright as seated function returned - waiting for enough function to return to let me go back and get my wheels.<p></p><p>Just after making it to my wheels (and then on wheels to the loo) the grocery shop delivery arrived. This time I listened to my inner sensible-ness and didn't even attempt to walk. Instead I whizzed easily to the door - and from my chair could quickly stack the shopping onto the side, ready to put away. All while chatting casually to the delivery driver.</p><p>From my wheels, I then stacked the groceries into piles on the worktop adjacent to the relevant cupboards: the fridge/freezer pile, the cooking ingredients pile, the drinks pile, and the snacks cupboard pile. Once it's all sorted, I go to each pile in turn, then get out of my chair, and stand while I put it away - often supported by leaning on the worktop for balance. </p><p>Repeated bending and standing is a major trigger for #PoTS symptoms so trying to do this while standing would make me crumple even on a relatively good day - and attempting to talk whilst standing and unpacking....impossible. Just impossible. But from wheels, it was totally doable.</p><p>Essentially, without the wheels, I'd moved about 2m then needed 10 minutes rest before moving a further 1m. Once I got back in those wheels, despite the same level of symptoms, I probably moved 10 times as far, while talking and completing practical household tasks - and still hadn't got close to the same level of symptoms!</p><p>My part time wheelchair use lets me do so much more - and do it safely. And from those wheels my world is SO much bigger. So while I don't need my wheels every moment, yes, I absolutely need them to be able to get on with life.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxJMAdeswan9MqYQTMjxl21TpdPfjW9JrmBeKK87O3O8SOe9stlQ3PM0kwqmlSdzDjDL9AUKFQVtU0cCS-lZAFDbU9x4wFrOPWPrs_Q3fXYmOhlZjeYUAQqBJ4JAzmy5cqUvOKZ7s0iQezWBgwHMgM3y5alluf_0WgHxc4EPg5P3X_5iUlKGuTYbZi/s662/wheel-freedom.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="2 box cartoon: 1: without wheels. Stickman sat on a chair looking sad, while a family pass the window outside. box 2 text: with wheels. Image: same stickman in a wheelchair, with the family walking outside. Text below: There is no need to pity me for needing wheels. They are my freedom." border="0" data-original-height="550" data-original-width="662" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxJMAdeswan9MqYQTMjxl21TpdPfjW9JrmBeKK87O3O8SOe9stlQ3PM0kwqmlSdzDjDL9AUKFQVtU0cCS-lZAFDbU9x4wFrOPWPrs_Q3fXYmOhlZjeYUAQqBJ4JAzmy5cqUvOKZ7s0iQezWBgwHMgM3y5alluf_0WgHxc4EPg5P3X_5iUlKGuTYbZi/w320-h266/wheel-freedom.jpg" width="320" /></a></div><br /><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com2tag:blogger.com,1999:blog-8572102937612408267.post-57327113059742904582023-01-18T10:51:00.002+00:002023-01-18T10:51:55.787+00:00Fatigue and the 'cake dilemma'.<p> Please note that this is my experience - with the conditions I have (PoTS, Hypermobility, and various associated stuff). Don't expect everyone to be the same! </p><p>I struggle to digest, and full meals can leave me unable to function/with a reduced level of consciousness due to PoTS. When I'm severely fatigued, I'll reach 'unable to function' before I've finished a meal. The only way to eat enough during these times is to snack so I do lots of little bits of digesting instead of a few heavy duty sessions.</p><p>However: cake. I could probably eat cake all day on a fatigued day. The sugar hit gives me a temporary energy boost, then as soon as its gone, I crave more cake to get a new sugar boost. Only...it's not a real energy boost. When I'm fatigued and should rest, this sugar boost makes me feel like I have energy so I can do stuff, but in reality it just masks my fatigue - and when it fades my overall fatigue is worse than it was before. The cake effect essentially stops me from recharging - it masks my need to recharge without actually addressing it. It replaces my physical awareness that I need to rest with a misleading feeling that I don't need to. Which unsurprisingly means that sometimes I will crave cake when what I actually need is a nap. </p><p>So on the one hand, cake on a bad day will give me short bursts of functioning. On the other hand, the cake coping strategy prevents me from recharging - meaning I get worse.</p><p>There's no way I'm going to ban myself from cake, however I need to be aware of its effect on me, and make choices. Sometimes I will eat the cake, use the fake energy, and take the consequences in due course - and sometimes I will take a nap instead.</p><p>And there you have it. My fatigue-related cake-dilemma.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitFY3SE7QQbgb7JuDlna5-XUGi3jw1wASnjoFb55bXYwenDS6BeHeeTe70cQnqbhZPluXY-LOiK2J4oMamd4hQg3zwEClfJiMEM88xFbaRd7lR223268ETuIiZWtplm_Fnl4LyBaD_5EFc6ecypbMjBQAXVVjXZZ3x6gyBFkQxEz1rgbEmwNfKhtRR/s1748/DisabilityHack%20(5).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1240" data-original-width="1748" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitFY3SE7QQbgb7JuDlna5-XUGi3jw1wASnjoFb55bXYwenDS6BeHeeTe70cQnqbhZPluXY-LOiK2J4oMamd4hQg3zwEClfJiMEM88xFbaRd7lR223268ETuIiZWtplm_Fnl4LyBaD_5EFc6ecypbMjBQAXVVjXZZ3x6gyBFkQxEz1rgbEmwNfKhtRR/s320/DisabilityHack%20(5).jpg" width="320" /></a></div><br /><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com2tag:blogger.com,1999:blog-8572102937612408267.post-12418380621240300512023-01-11T14:05:00.001+00:002023-01-11T14:05:52.303+00:00About the Stickman Communications keyring cards <p class="MsoNormal"><span lang="EN-US">These are <a href="https://stickmancommunications.co.uk/product-category/keyring-cards-product-type/" target="_blank">laminated cards </a>which the disabled person can show as and when they want to share the
information, communicating about disabilities and condition in a way that makes
them an accepted part of life. Covering over 200 conditions, symptoms, and
management techniques, these can be mixed and matched to create a pack that fits
the person’s needs. <o:p></o:p></span></p><p class="MsoNormal"><span lang="EN-US">Cards are
created through our own <b><a href="https://pifonline.org.uk/pif-tick" target="_blank">PIF TICK information quality mark</a></b> <b>accredited process</b>.<b> </b>This ensures each card: accurately
conveys the need/symptom from the disabled person’s perspective, is medically
accurate, and will be understood quickly and easily by a reader without the
need for prior understanding of the condition or symptoms.<o:p></o:p></span></p><p class="MsoNormal"><b><span lang="EN-US">Why the
stickman cartoons?<o:p></o:p></span></b></p><p class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;"><!--[if !supportLists]--><span lang="EN-US">-<span style="font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
</span></span><!--[endif]--><span lang="EN-US">The
stickmen are relatable for the non-disabled person, helping them to understand
the symptom or condition in question. <o:p></o:p></span></p><p class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;"><!--[if !supportLists]--><span lang="EN-US">-<span style="font-size: 7pt; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
</span></span><!--[endif]--><span lang="EN-US">People
don’t like hearing that someone has challenges or limitations – making it
almost impossible to communicate these without coming up against either ‘your
life is so pitiable’ OR ‘it can’t be that bad’ – both are huge barriers to being
believed and getting the needed support. The stickmen immediately inject enough
humor to help circumvent this.<b><o:p></o:p></b></span></p><p class="MsoListParagraphCxSpLast"><b><span lang="EN-US">Who will
benefit?</span></b></p><p class="MsoNormal"><span lang="EN-US">Anyone with
a condition or disability where meeting societal norms, and communicating
clearly about symptoms and needs is not always possible or practical. For
example where affected by limited energy levels, overwhelm, brain fog, brain injury, pain etc. This
includes: Long covid, ME/CFS, autism, depression, anxiety, fatigue,
hypermobility, diabetes, ADHD and more.<o:p></o:p></span></p><p class="MsoNormal"><span lang="EN-US">Hannah
Ensor originally created these to use herself. She said </span></p><blockquote>“I wanted to be able
to live in a way that works for my brain and body without people making a fuss.
And without needing to spend my whole life – and most of my limited energy –
explaining the same information repeatedly and having to justify and fight my
corner in anything the other person doesn’t understand or which don’t meet
their preconceptions or assumptions.”</blockquote><i><o:p></o:p></i><p></p><p class="MsoNormal"><b><span lang="EN-US">Key
benefits that promote independence:<o:p></o:p></span></b></p><p class="MsoNormal">The keyring
cards fill a unique need: creating understanding of the person’s needs and ways
of being at a social and practical level, requiring no prior understanding of
that person’s condition.</p><p class="MsoNormal"><span lang="EN-US">They can:</span></p><p class="MsoNormal"></p><ol style="text-align: left;"><li>Explain conditions</li><li>Enable medical professionals to understand quickly and accurately.</li><li>Enable the card user to communicate what they need (practically and emotionally) wherever they are, without needing to speak. </li><li>Reduce anxiety by reducing the fear of “what if my symptoms kick off” because if that happens, the cards provide a solution.</li><li>Normalise and create acceptance and understanding of unconventional behaviors.</li><li>Remove barriers of preconception and misunderstanding in social and work interactions.</li><li>Save energy (vital for many conditions that feature fatigue)</li><li>Avoid situations where body language or manner offends and prevents the message being accepted. </li><li>Give card users ability to communicate key points effectively that they may otherwise feel too embarrassed, angry, upset, frustrated, fatigued, unwell etc. to explain.</li><li>Gives the non-disabled reader confidence, and enables them to relax around the disabled person.</li></ol><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/LTcDZmcGDmI" width="471" youtube-src-id="LTcDZmcGDmI"></iframe></div><br /><div><br /></div><p></p><div><br /></div>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com1tag:blogger.com,1999:blog-8572102937612408267.post-83650907598123856832022-11-04T15:39:00.001+00:002022-11-04T15:52:37.256+00:00The difference an accessible car makes<p> Not long ago I got a car on the <a href="https://www.motability.co.uk/" target="_blank">motability scheme</a> for the first time. It took months of research (and saving up!) then once I'd ordered the car it took about a year to actually arrive. </p><p>It's a volkswagon Caddy Maxi Life (i.e. a little van, but with seats. The long version so it could have 7 seats, but I chose 5 seats plus wheelchair space)</p><p>It is beautiful. Perhaps not in looks, but in practicalities. So very beautiful.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAdd54g0NDOshdTdqWHCuOed_OFgCaJr2TWaEUaqs_PWEuimj5dB8UtJKlv4GAKpo81HKzz6A7CyqnB75QQkDrKYIsZJbeVtcBJwIBi9iDEOtANYOQRZcPoeewwuP7eGNgMQQ9IaE9goJZlsgrZ8bc9RkneRg0dzQi7nDNS-63iP2-QU9HwF-0k7AF/s1280/photo_2022-11-04_15-15-52.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="silver VW caddy van with 5 seats, parked in a carpark" border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAdd54g0NDOshdTdqWHCuOed_OFgCaJr2TWaEUaqs_PWEuimj5dB8UtJKlv4GAKpo81HKzz6A7CyqnB75QQkDrKYIsZJbeVtcBJwIBi9iDEOtANYOQRZcPoeewwuP7eGNgMQQ9IaE9goJZlsgrZ8bc9RkneRg0dzQi7nDNS-63iP2-QU9HwF-0k7AF/w320-h240/photo_2022-11-04_15-15-52.jpg" width="320" /></a></div><br /><p>In my old car I used to be able to transport my powerchair by dismantling every part of the chair that I could and then I either had to: a) put the back seats down, set a portable ramp to the boot, then drive the chair up the ramp - and pack all the dismantled parts around it. Or b) drive it up a ramp into a trailer, use ratchet straps to fix it into the trailer in each corner, then tow the trailer.</p><p>Option a) was good if I had no passengers - a bit tricky but doable. But a couple of years ago the catch on one of the back seats broke so I could no longer put them flat. This option became impossible.</p><p>Option b) was reliable - but time and energy consuming. It took about 15 minutes to get it all sorted, then I had to always find parking for car plus trailer - ruling out sone places, and adding hassle everywhere else. I also needed a lot more mental energy because I'd have to be well enough at the end of the trip to reverse a trailer into a narrow driveway. It was....doable often enough to be useful, but it meant I was very restricted in where and when I could take my off-road chair. </p><p>In the new car...</p><p>I have a powered hoist that lifts the off-road powerchair in a few seconds - all I need to do park the chair in the right spot, remove the seat pad, fold the back forwards, and hook the straps on. Press the button to lift it in. And then strap it in with a seatbelt and I'm good to go. The whole process is probably under 1 minute.</p><p>And I've adapted a bit of boot liner from my old car to cover the carpet on the side of the boot by my wheelchair -otherwise that would get SOOOO muddy (yay for sticky-back velcro!)</p><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeAo05_n_5psnHEQ6j0xCqbrYJCEmlJ8tScNM91Kwyjiqpi0EH4IHeDtPDBfDoXShbUg1Xa6GRst7uU6IQWXI1tD73-6N_R1UysfbT905PlNmgmTQf1Na9k_YShIZtjayemp5vpKPCnBjPXzu91KQBnmCEVebV_hjnZ8K7-Z1UCUZOLHz2kXW8Uos-/s1280/photo_2022-11-04_15-12-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="off road powerchair suspended in midair from a hoist coming out of a boot" border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeAo05_n_5psnHEQ6j0xCqbrYJCEmlJ8tScNM91Kwyjiqpi0EH4IHeDtPDBfDoXShbUg1Xa6GRst7uU6IQWXI1tD73-6N_R1UysfbT905PlNmgmTQf1Na9k_YShIZtjayemp5vpKPCnBjPXzu91KQBnmCEVebV_hjnZ8K7-Z1UCUZOLHz2kXW8Uos-/w240-h320/photo_2022-11-04_15-12-18.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH0Ibl_i0CB-OwlOZjcTGJY03kTVbaYgxUgrfKzjxusyzmuQl5cssRjgdwAf1ZiVMYgiMylhYR3rqteyVx9tleDSA3LZQTINi0Rty4CeT-M8zGXV-kb7B-KOIzH5rNJMX6so-ZRvIA_2DRIq6KEWjgCAYFiNeCCGg0Ct3CFK9-fmgNZGJU4MXCst5p/s1280/photo_2022-11-04_15-12-16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="VW caddy with its boot open wide - and in the boot is an off road powerchair with a hoist attached. All tucked in nicely and the boot is so big the chair almost looks small!" border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH0Ibl_i0CB-OwlOZjcTGJY03kTVbaYgxUgrfKzjxusyzmuQl5cssRjgdwAf1ZiVMYgiMylhYR3rqteyVx9tleDSA3LZQTINi0Rty4CeT-M8zGXV-kb7B-KOIzH5rNJMX6so-ZRvIA_2DRIq6KEWjgCAYFiNeCCGg0Ct3CFK9-fmgNZGJU4MXCst5p/w240-h320/photo_2022-11-04_15-12-16.jpg" width="240" /></a></div> </div><p>The boot is so massive that the whole chair fits - and I still have 5 seats. Outings with nephews and nieces are suddenly viable again. My off-roader can now go everywhere with me - I can go on spontaneous 'walks' whenever the moment strikes.</p><p>Not only that, but my manual chair fits onto the back seat with no folding at all for everyday use - making it super easy. I've used a cheap seat cover designed for transporting dogs to keep the 2 seats nice. The 3rd seat in the back row is available for a passenger. (If I want more than 2 passengers, I can take my manual chair apart and fit it easily in the boot alongside the powerchair)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbKtXTVB_rWOiA8vxRz4JXk78r0iVdHA0N6-oPt23V1BwPee_IxUy8n5CGhqnaV_GhQpcnWVAJsIT8wlGa38rvpsi9hGMT2RYMlZned0dJDwaoXofXnC8jqTnWJlX6TzinZ4chKsJV0_3pz6OHI41z1TOUQpjopn_IKk-syyFfMZPy1cX3nR4vqPPu/s1280/photo_2022-11-04_15-12-22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="close up with the sliding side-door open, and a manual wheelchair (white framed quickie helium) placed on the back seat." border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbKtXTVB_rWOiA8vxRz4JXk78r0iVdHA0N6-oPt23V1BwPee_IxUy8n5CGhqnaV_GhQpcnWVAJsIT8wlGa38rvpsi9hGMT2RYMlZned0dJDwaoXofXnC8jqTnWJlX6TzinZ4chKsJV0_3pz6OHI41z1TOUQpjopn_IKk-syyFfMZPy1cX3nR4vqPPu/w240-h320/photo_2022-11-04_15-12-22.jpg" width="240" /></a></div><br /><p>And then there's 'little' extras:</p><p>- a steering knob that makes maneuvering much easier.</p><p>- Rubber flooring throughout (So much easier to keep clean - especially useful given how much I love being outdoors!)</p><p>- a heated windscreen so I don't subluxate (partially dislocate) ribs and various arm joints when clearing it in the winter</p><p>- parking sensors (which are handy as its considerably larger than my previous car)</p><p>- a bigger fuel tank means fewer refueling trips - it should do around double the miles on a single tank.</p><p>- really good seat heights for me getting easily in and out.</p><p>- lumbar support in the drivers seat (and OH MY WORD this makes a difference! I nearly panicked when I first sat in my car because I thought 'oh no! sitting in this will kill my back!' - then realised the lumbar support wasn't activated...and sure enough one push of a lever and it was fine.)</p><p>- All the doors are easier to open and close.</p><p>And other small things like fully working central locking and boot unlocking with a button, and being able to play music from my smartphone instead of CDs (yes, my old car was very old).</p><p>It's taking some getting used to. A VW caddy is a LOT bigger than an old style Ford Fusion, but I am so thankful for it, and it's already making life so much simpler. And when you have limited energy and limited brain power, that is a massive deal.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixMJIHPdH2KKBbe-4L1e--TCiOt_aQfx3OB6EmZSse0PR9bYKha9rpN1OM9Kc8yZV5TxN_DuJu6JhsZ_ubHIzrp3SrnasJYpgYrsgt-QjppGHS0fQwKYoJGMGO1x-YngJY2AmgrmH5O8xf4MrIKV02_Jmw6xBm4R3XCgq-FVkSeqcOC98DoKXKlCDz/s1280/photo_2022-11-04_15-12-24.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixMJIHPdH2KKBbe-4L1e--TCiOt_aQfx3OB6EmZSse0PR9bYKha9rpN1OM9Kc8yZV5TxN_DuJu6JhsZ_ubHIzrp3SrnasJYpgYrsgt-QjppGHS0fQwKYoJGMGO1x-YngJY2AmgrmH5O8xf4MrIKV02_Jmw6xBm4R3XCgq-FVkSeqcOC98DoKXKlCDz/s320/photo_2022-11-04_15-12-24.jpg" width="240" /></a></div><br /><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com2tag:blogger.com,1999:blog-8572102937612408267.post-50012520605960275832022-10-18T15:39:00.003+01:002022-10-18T15:40:02.142+01:00A recharging break<p> Not long ago I wrote about the difference between recharging breaks and holidays.</p><p>Well, last week was a recharging break.</p><p>For various reasons (not least, the heatwaves) I've been pushing my limits since spring and was in definite need of recharging. Then I caught COVID, and if there's one thing I've learned from the online long covid community it is: rest. Don't push it.</p><p>And so, 2 days after testing negative and being mostly recovered from actual covid symtpoms (just having a cough - and a definite worsening of autonomic issues) I went 'on holiday'. Only it wasn't a holiday, it was a recharging break.</p><p>And Oh Boy, was it beautiful. A week in a little holiday cottage with level access throughout the inside so I could wheel whenever I wanted. And with beautiful views.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrDHqBota72D8t317N9luqPbPSGak6CDrsBTuNLK1mYTg9mcWOTYBpXGPooej-ENODmPq8xa6p-FlxUNIbu1jQvZs2TyTat91uupYdDfa8zNCBecoKTl1z1TsX5bA3cIdJDv97mzL3gCOeTuV3SWRU3iFZji6612PpZ_yjIgQ7ECeMHW8Z57nKqu56/s1280/photo_2022-10-18_15-27-34.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="blue sky, a wooden fence, and a section of picket fence with trees and rolling fields visible through" border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrDHqBota72D8t317N9luqPbPSGak6CDrsBTuNLK1mYTg9mcWOTYBpXGPooej-ENODmPq8xa6p-FlxUNIbu1jQvZs2TyTat91uupYdDfa8zNCBecoKTl1z1TsX5bA3cIdJDv97mzL3gCOeTuV3SWRU3iFZji6612PpZ_yjIgQ7ECeMHW8Z57nKqu56/w320-h240/photo_2022-10-18_15-27-34.jpg" width="320" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihsEXPeBmLfyRkRMKVuG4bQQ3cDmUEYCHMvdW74UKq5UW0qwtJoJGEJIHUZ7NNuh0uKRTES0GzbPKa0x91WMlGdYDM7VWyuVZnVyY95yc47q_LEdzs_ofzIHYmRo3WYo5QcT61-qPhnCOFGLcUDzKZmYhX46YCr5USRXdvTo370yHFGF8pBIUG3FPq/s1280/photo_2022-10-18_15-27-36.jpg" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"><img alt="Open french doors onto a patio - overlooking rolling green fields and trees." border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihsEXPeBmLfyRkRMKVuG4bQQ3cDmUEYCHMvdW74UKq5UW0qwtJoJGEJIHUZ7NNuh0uKRTES0GzbPKa0x91WMlGdYDM7VWyuVZnVyY95yc47q_LEdzs_ofzIHYmRo3WYo5QcT61-qPhnCOFGLcUDzKZmYhX46YCr5USRXdvTo370yHFGF8pBIUG3FPq/w240-h320/photo_2022-10-18_15-27-36.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzbivctHRGfriAfmtp35wdr4iB_5_W8zkYxaak63yb87M-6wecFg6c-YGr5viC1yQ1GHhl3kwGndbxZZ9a03eJY8LnGsqthn0w7M7jyAjsKPrqvIDjmL7dB0vk7GiaHZ34NLIg3nPTsO-ZfPecbveSCkmHWZUPwKZ7QmO8tler-ZerDLL6Hqa8J8a4/s1280/photo_2022-10-18_15-27-41.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="carrot and sweet potato mash, smoked salmon, cream cheese, and greens." border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzbivctHRGfriAfmtp35wdr4iB_5_W8zkYxaak63yb87M-6wecFg6c-YGr5viC1yQ1GHhl3kwGndbxZZ9a03eJY8LnGsqthn0w7M7jyAjsKPrqvIDjmL7dB0vk7GiaHZ34NLIg3nPTsO-ZfPecbveSCkmHWZUPwKZ7QmO8tler-ZerDLL6Hqa8J8a4/w240-h320/photo_2022-10-18_15-27-41.jpg" width="240" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdelf3gXhGEPX8SzzUHnrNvDco1nuLO2OtZMz_JOcFRyzFnLFhcZB0cQF0ig71dEvazKP2eHEcPP4uDUB7M7Y2Iq5WEqa55VOFWBUlbd5Zq8_QQW_jqMAiPaSy8ISI04XZ2QU-gxguPAVeRIJFElbfW6YGA7SCZijR-Yc4OjRrKo9fGqWli8MKD2Nn/s1280/photo_2022-10-18_15-27-49.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A persons legs and fluffy socks as the person lies on decking, with a patio and blue sky visible through the decking railings." border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdelf3gXhGEPX8SzzUHnrNvDco1nuLO2OtZMz_JOcFRyzFnLFhcZB0cQF0ig71dEvazKP2eHEcPP4uDUB7M7Y2Iq5WEqa55VOFWBUlbd5Zq8_QQW_jqMAiPaSy8ISI04XZ2QU-gxguPAVeRIJFElbfW6YGA7SCZijR-Yc4OjRrKo9fGqWli8MKD2Nn/w240-h320/photo_2022-10-18_15-27-49.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz7EJcwkFCE_dR_omuBJ1oA2_nwdhe17m67Qv1fV_ylQSTbU0Oq0FilfcKVOP_XjKOWnxtkMsldhne-qSD_ywGibNU9yLko8EA1utUZreika4q7se01QoX1e2k2BMf-UZSR0_UJnE9NryCJ3GwnTHLAxX6jCs9hvJ-4JKpmJM_OXgj96LLbpIj2yN5/s1280/photo_2022-10-18_15-28-02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A completed 1000 piece jigsaw with a picture of a white thatched cottage with flowers in front of it. Also an open crossword book. And a tenor recorder." border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz7EJcwkFCE_dR_omuBJ1oA2_nwdhe17m67Qv1fV_ylQSTbU0Oq0FilfcKVOP_XjKOWnxtkMsldhne-qSD_ywGibNU9yLko8EA1utUZreika4q7se01QoX1e2k2BMf-UZSR0_UJnE9NryCJ3GwnTHLAxX6jCs9hvJ-4JKpmJM_OXgj96LLbpIj2yN5/w320-h240/photo_2022-10-18_15-28-02.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: justify;"><span style="text-align: left;">I rested. Did jigsaws. Did a few crosswords. Lay on the sofa watching the view. Lay on the deck watching the view. Lay in bed watching the sky. Listened to audio books. Did lots of gentle physio (initially stretching, and sitting up actively on my wheelchair - progressing to close to my usual level over the week). Read a little. Ate. Finished watching time team - started watching abandoned engineering. Played the tenor recorder a bit. Listened to rain on the roof. Slept. I didn't leave the cottage once. And I had new pyjamas. </span></div><p>It was perfect. </p><p>And now I feel like I've come back to life. Everything is less overwhelming, and I can think clearly (at least several times a day). I'll need to be careful for a while yet as I'm still below where I was a year ago, but I have to say it's lovely to feel this well. Or perhaps, this 'not so utterly awful' 😊</p><p>And now the trick is to try and maintain it!</p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com1tag:blogger.com,1999:blog-8572102937612408267.post-27787560091040602082022-10-03T13:04:00.022+01:002022-10-05T16:35:26.430+01:00Autonomic dysfunction management, and COVID<p> I've had autonomic issues at a disabling level for almost 2 decades now - secondary to a hypermobility syndrome/connective tissue disorder.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://stickmancommunications.co.uk/product/autonomic-dysfunction-card/" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img alt=""I have autonomic dysfunction. My autonomic system which controls heart rate, blood pressure, breathing, digestion, temperature, sweating, "fight or flight", kidney function and more, is faulty. This can cause many symptoms including light-headedness, fainting, tremors, abnormal blood pressure and/or heart rate, fatigue, brain fog, and various digestive problems. Symptoms are variable and may be made worse by anything affecting this system, including eating, standing up, and temperature changes. There is no known cure for my type of autonomic dysfunction, it is my normal."" border="0" data-original-height="750" data-original-width="1000" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAVWR0wemwPJ-BDvFI_7qqN73rsmuu5dLE8ZS62JuMbLPKt2k0l2SA8vxZ9mCVrIS0JNoMW4ncfsPPxF-SpRzAxRvphCzW6qV0xjY2FtGosS9aUJmkqfIDnd5fFhMalG5P1RaYAHFq486hjkXCQ5greb0tKncGZYePQROrZrtcmZcbENydvzQMIqBI/w320-h240/CC160%20striped%20autonomic%20dysfunction%20card%202022%2010%2005_1.png" title="Autonomic dysfunction card" width="320" /></a></div><p>Last week I caught COVID for the first time. Given that any infection messes with my autonomic issues and COVID can itself cause autonomic issues, my symptoms are, shall we say, a little more enthusiastic that I'd like. </p><p>So I'm writing my management techniques, in no particular order, as a reminder to myself, and sharing it in case it helps anyone else. (and no, it won't be superbly worded with perfect spelling and grammar - I have COVID.)</p><p>(Note: These are what works for me. They may help other people too but they won't always work for everyone. Always check with your medical professional before making changes)</p><p>1. Compression of abdomen and legs when upright and concentrating. Sports compression wear (like Skins) and an abdominal binder style back support work for me. Sit with feet up as standard sitting position.</p><p>2. Eat frequent small meals. If I eat enough to feel full I can guarantee a big symptom increase as my body struggles to digest it. Don't skip meals though - that makes me feel sick.</p><p>3. Eat easy-digest food. Yesterdays omelette with vegetable mash was perfect.</p><p>4. Cough horizontally where possible. I mean when lying horizontal - it reduces the autonomic strain. Same with sneezing.</p><p>5. No talking while standing. Avoid if possible when sitting. Converse lying down wherever possible. (Yes, talking is a legit Postural Tachycardia Syndrome/autonomic dysfunction symptom trigger - it changes the breathing pattern. If I talk as well as do something else that is autonomically challenging, it's a disaster recipe. A few words when standing can literally wipe out my energy for an hour)</p><p>6. Pace. Rest breaks whenever I start struggling to concentrate/think or coordinate. Numb face = BIG REST NOW. (This is my personal 'red flag' symptom that means if I don't manage symptoms there and then, symptoms are going to get really really bad.)</p><p>7. Rest only counts if it's horizontal. Head at or below heart level. Lying back on propped up on pillows does not allow me to recharge from PoTS symptoms - and will infact slowly worsen them. It's OK to do it, but I must remember that although it rests my joints, it does not recharge/rest my autonomic system.</p><p>8. Move. slow and strength based works best for me. e.g. slowly flexing my ankles and tensing my calves as much as I can (calves? Calfs? is the plural of anatomical calves the same as baby cows?)</p><p>9. Forget upright exercise. If standing and breathing is a challenging, adding in exercise isn't going to work. It's amazing how much can be done horizontally with an exercise band - I even have my own horizontal with exercise band version of squats (albeit a bit gentler) - in just a few reps it makes my muscles feel exercised with minimal autonomic strain. </p><p>10. If feeling well enough to try to exercise, try 2 reps of something my body usually likes and see if it makes me feel good or zonked. If zonked, back to rest and do not attempt again today. Or at least for several hours.</p><p>11. Hydrate. With liquids plus salts. Current favourites: fruit juice with table salt, or water with 'five Zero' sports rehydration tabs added. Little and often - not whole glasses in one go (that just makes me feel sick - esp if lying down)</p><p>12. Beware the battle between wanting to feel cosy, and overheating. Heat can be a major symptom trigger - and feeling poorly means I want to wear a fluffy jumper and snuggle under the duvet. But doing that will worsen symptoms: So turn heating down, and open window to keep the room cool enough for some snuggling to be managed, and wear a soft but thin jumper. Double check whether have overheated several times a day - unsnuggle and see if the cooler air revives or does nothing. If it revives, reduce snuggle coverage (maybe a blanket instead of duvet, and long sleeved shirt instead of jumper). Also remember that overheating much more likely after food, so eat meals outside of the nest.</p><p>13. wriggle/stretch before standing. Going from horizontal and relaxed to standing and using muscles is a big autonomic challenge - ease the body in to it by slowly stretching, flexing calves, generally tensing then relaxing muscles, taking a deep breath - and then moving into upright.</p><p>(I may add to this if I think of more, but it's enough for now!)</p><p><br /></p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.comtag:blogger.com,1999:blog-8572102937612408267.post-30078830931005833322022-08-19T14:28:00.002+01:002022-08-19T14:34:00.962+01:00Disability language: Person first or disability first?<h3 style="text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCoe5Z1JgTwJZtRCRiVTrzVgIDDuYfqOQSlZVtQ7v9xg0JkYKGgt6X2Mg3wjMm9xtddzL189WJKunQL5P9mwoA6OYPNbAwiMQ-eKWXPfFyAngxnloQCbeSoICLwm0iNLGzZ0bNEH0RaDyomtqm5boSBkC41Kisa8N447V2tEfKQymWBbv5i_s4NPcc/s600/Hannah%20Ensor%20in%20wheelchair_1.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="White woman with shoulder length brown hair and glasses sat in a white framed wheelchair and smiling. In a garden." border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCoe5Z1JgTwJZtRCRiVTrzVgIDDuYfqOQSlZVtQ7v9xg0JkYKGgt6X2Mg3wjMm9xtddzL189WJKunQL5P9mwoA6OYPNbAwiMQ-eKWXPfFyAngxnloQCbeSoICLwm0iNLGzZ0bNEH0RaDyomtqm5boSBkC41Kisa8N447V2tEfKQymWBbv5i_s4NPcc/w320-h320/Hannah%20Ensor%20in%20wheelchair_1.jpg" width="320" /></a></div> There are 2 main ways of referring to disability. <br /></h3><p>One is 'person first' - that comes from the medical model and is used extensively within the medical profession.</p><p>"I am a person with a disability" </p><p>The <b>problem</b> is the <b>medical condition. </b>Putting the person first creates distance between the person and the 'problem' (as percieved in this model) and emphasises the individual.</p><p>The other is 'disability first' - associated with the social model: </p><p>"I am disabled."</p><p>People with impairments are disabled by barriers in society. These barriers can include physical (e.g. access ramps), informational (e.g. braille not provided), sensory (e.g. harsh lighting, loud noise) and attitudinal (e.g. "you don't look disabled therefore you are faking it and I won't allow the adjustments you have requested."). </p><p>The <b>problem</b> is the <b>barriers</b>. </p><p>It's worth noting that while the social model is a great way of helping organisations understand that they are responsible for many of the barriers that disabled people face, not all disabled people relate to it completely on a personal level. Some conditions do 'cause problems' that can't be addressed by societal change. (For example if my wrist dislocates and means I can't push my wheelchair, there isn't anything society could have done to prevent that increase in disability caused by my condition). </p><h3 style="text-align: left;">When are the different terms used, and why?</h3><p>While the two political models above do play a part in language choices, there are many other factors too. From my experience and observation, use in the disabled communities is frequently as follows:</p><p></p><ul style="text-align: left;"><li>Newly diagnosed (and parents/carers of) – almost exclusively use person first (medical model).</li><li>Experienced patient – majority use disability first (social model).</li></ul><p></p><p>(with a mixed use area between).</p><p>When you think about it, this makes sense.</p><p>- Newly diagnosed people have received their language from the medical profession.</p><p>- Newly diagnosed people are often going through symptoms which seem to be taking away key parts of who they are. I experienced this. It felt like my condition was taking away my career, my social life, my hobbies - my very value as human being. Everything felt like it was being swamped by my condition. Person first language can be a valuable reminder for both the person with the disability and people around them that contrary to how it feels, they are still a person - still part of society, and still of value. They just happen to have a disability.</p><p>But over time those symptoms usually become (to some extent) understood, and an arsenal of coping strategies and management techniques/aids/adaptations is built. In addition, a new lifestyle that works for our body and brain has often become the norm. Where we are fighting for access and support it isn't our disability we are fighting against, it's inaccessible systems, attitudes, red tape, and a lack of understanding. The very things that the social model focuses on. In addition, the 'distance' from the impairment/disability present in the medical model no longer makes sense. Disability has become a normal part of life and is not automatically bad - it just exists. </p><p>We also use 'characteristic first' language in most areas of talking about our lives (I'm brunette, blue-eyed, bright, occasionally funny etc) so as disability becomes a personal normal, and 'just another one of my characteristics' it is natural for language patterns to follow those for other characteristics. In addition, having other people emphasise that I am a person through their person first language can feel weird, artificial, and patronising - are they so blinkered that they genuinely need reminding that I'm a person?</p><p>Many autistic and neurodivergent adults exclusively use disability first language when referring to their neurology. (e.g. "I am autistic") because their neurology is not something they carry with them, or something held at a distance. It is a whole way of processing the world and interacting with it, intrinsic to their very identity and being. I'd say it is even more intrinsic than things like faith, nationality, etc, where identity first language is the norm - saying "I have Englishness" would be absurd.</p><h3 style="text-align: left;">So which term should be used?</h3><p>My advice would be: </p><p>- if you are an organisation, at policy level use the social model - accept and own your responsibility for dealing with the barriers that it is within your power to remove or reduce. </p><p>- if you are communicating with an individual or a specific patient group, be led by their language choice.</p><p>- if you are a patient, use whatever you want, whenever you want. Use what works for you at the moment you are in.</p><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0tag:blogger.com,1999:blog-8572102937612408267.post-44685289811512866602022-07-11T08:34:00.005+01:002022-07-19T06:13:12.976+01:00Resolving issues accessing our website<p>Some of you may have recently had a spate of 'Forbidden' error messages when trying to access our website. It's all fixed and most people should be able to access it fine. If you can't, please follow these steps:</p><p><b>If you are using wifi: </b>Turn off mobile data (if it is turned on on your device), clear your browsing history and if possible, reset your router (turn it off for 5 minutes, then on again). Then try again.</p><p><b>If you are using mobile data:</b> clear browsing history, then wait for 24 hours before trying to access the site again. (if this fails the first time, please repeat it - explanation as to why is below)</p><p>[Note: Wifi is more likely to succeed due to the way it caches/remembers information.]</p><p>If you still can't access the website, please complete this form: <a href="https://forms.gle/QEVg4uszf4ToDNxS9">https://forms.gle/QEVg4uszf4ToDNxS9</a> so that we can work to identify and resolve the issue.</p><h3 style="text-align: left;"><b>The story behind it:</b></h3><p>I know not everyone will be interested in this, but I found it fascinating (albeit frustrating) so I thought I'd share it for anyone interested. (For those not interested, the instructions above are all you need to read.)</p><p>Usually website problems are due to the website - obviously. Usually an upgrade of one plugin clashing with another. So usually they can usually be fixed within a day or so. But sometimes - very rarely - it's something external.</p><p>The first issue in May was a small selection of people having their baskets refuse to show what had been added, making shopping impossible. But steadily more people over time. But not everyone... Eventually we realised the issue was an overzealous 'privacy' settings update on all apple products - affecting more and more people as they updated their systems. It was so strict it stopped the basket talking to the rest of the site! </p><p>So our web designer resolved it by using a single page checkout which was editable - so the 'not talking to you anymore' sulking basket is out of the picture.</p><p>Then our web designer spent several weeks sorting all the little bugs that arise over time in a website, and did some extra 'speed it all up' magic. And it sped the site up SO much - loading was almost instant. Seriously fast for a small site like ours. Brilliant!</p><p>But then...</p><p>People started getting 'forbidden' messages. "You do not have permission to access this page". Right when we were at Naidex - for the worst possible timing.</p><p>The web designer was tearing his hair out - everything was literally working perfectly on the website. And it was so inconsistent - he could access it fine. I could access it on my laptop - but not on my phone. Even the tech experts who'd created the server he uses couldn't work it out. After some investigation it seemed that the 'checking you aren't a bot' was deciding 75% of my customers were, in fact, bots. Then the most ridiculous sounding possibility dawned on us...What if the site was now <i>too fast</i>? So fast that the bot-checker didn't have time to complete the check and was deciding "Um...that was too quick for me to finish, so let's block them just in case". So any internet connection that wasn't super-fast was basically not being allowed to access the site.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7lhb4LgkVN3J4c06msSvWEAqr2g9NML-TdSoFWbo9PKqfk_a0HrJIUmUC6IEOlBJYOqg6vWv6poH7KbRS-6lRzbWf3GDjQjjEeeE1MLkD9xqtr835cei0dxxCtGqzSluwN3MbF1p_p1kgqqOx744qLB5g52NF1-6JdmgoJzHzft3TLffs8dikOVEV/s1748/DisabilityHack%20(8).jpg" style="margin-left: auto; margin-right: auto;"><img alt="CGI woman with dark hair and superhero style suit zooming across the sky, superman style." border="0" data-original-height="1240" data-original-width="1748" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7lhb4LgkVN3J4c06msSvWEAqr2g9NML-TdSoFWbo9PKqfk_a0HrJIUmUC6IEOlBJYOqg6vWv6poH7KbRS-6lRzbWf3GDjQjjEeeE1MLkD9xqtr835cei0dxxCtGqzSluwN3MbF1p_p1kgqqOx744qLB5g52NF1-6JdmgoJzHzft3TLffs8dikOVEV/w320-h227/DisabilityHack%20(8).jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><p>Rather than raise a support ticket with such an absurd problem as 'my website is so fast the internet can't handle it' - which, let's face it, sounds ridiculous, he tried a call to their support team. Before long he had the 4 top tech people on the hosting company all agreeing, all flabbergasted at the issue none of them had even heard of before, and all working on solutions. </p><p>And they did it. I'm afraid I don't understand the tech side of it well enough to understand 'how' - but they did it.</p><p>Whoop! Problem solved!....only, I still couldn't get my phone to access it. Clearing the 'cache' (browsing history) should have worked. But although that made it fine on wifi - on mobile data: FORBIDDEN.</p><p>It turns out that to speed up our internet viewing, not only do our devices 'cache' (or remember) data from sites we visit, but so do mobile data providers. So despite clearing my phone cache I still couldn't get past the 'Forbidden', because the mobile data providers had cached it so now was showing the forbidden without even attempting to connect to the actual site! And we basically can't do anything about it - just wait until the data provider clears their cache.</p><p>This is why the instructions above for mobile data are so much more annoying than the wifi ones. With wifi, just turning it off should clear the internet cache.</p><p>And there you have it. The saga of our website.</p><p>Hopefully over the next week or so you'll all be able to access it via any method you choose - and enjoy the speed and efficiency with which it now runs. </p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com5tag:blogger.com,1999:blog-8572102937612408267.post-74921530338072162542022-06-16T10:02:00.000+01:002022-06-16T10:02:01.583+01:00Holidays vs recharging breaks<p>I was discussing holidays with a friend who lives with fatigue. </p><p>Average person holidays are often about doing less than you have the capacity for. Going for a walk in the country when you could be doing housework. Using energy on fun and relaxing things rather than essentials. It is time off to relax and regroup - even though you totally could be getting on with your ToDo list at work and home.</p><p>With chronic illnesses and disability, rest and recharging is often essential. Without it we crash and burn - our health worsens, capacity reduces, and symptoms escalate. It's not an optional extra, it's a survival need. Then when we have energy, we use it - being constructive/doing things while we have the opportunity. The rest can look similar to some people's holiday activities - but are actually basic survival needs. 'Holidays' are often used for this essential recharging that average people don't usually need.</p><p>And there we hit an issue - resting when essential for pacing actually ends up meaning we are almost constantly operating at maximum capacity - and the refreshment that comes with actual holidays never happens.</p><p>So the question for me, as a disabled person with big fatigue issues, do I actually take holidays? Or do I only take essential recharge breaks? </p><p>Because they are not the same thing!</p><p>Essential recharge breaks get me back to functioning (at my level). Holidays are there to provide an extra level or refreshment. Holidays give license to use energy for non essentials, use less energy than I have available, and/or do things 'just because'.</p><p>So although my holidays will always look different to average people's, and may often be of the staycation variety, I will make sure that I take them. In addition to recharge days. Taking a break from my ToDo list when I could do more and could be working - and instead choose not to. Instead, I'll lie in the garden, or try a new craft, or potter round a garden centre, or socialise with friends.</p><p>Or maybe one day I'll take a holiday and try kayaking again...use a huge amount of energy on something I love doing, and be totally unrepentant about it.</p><p>And yes, holidays might require a recharging break before (so I can be physically capable of doing things on my holiday) and/or a recharging break after them (so I can recover) - and will almost always be shorter than an average person holiday - for example a weeks break might involve 3 days recharge, 2 days holiday, then 2 days recharge from the holiday, but I think it will be totally worth it.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEimUlHE76g9vrnHZRu8Xs7ZXJ3Q6DC1jjxmSXwnPucfcPFF7NZsolYsXYVIui9OGGr0piA7XRaOnUK_3jjHRofUloJUZtEm5Z18oLPVXrui0uf1_VY2PxwZzIv8ikDvXMhIZVx5GSTQh_WJg3K3-Dz8AO9djBs4lSvaYFAMfUzb9iapVMsia8Bibbpa" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1240" data-original-width="1748" height="227" src="https://blogger.googleusercontent.com/img/a/AVvXsEimUlHE76g9vrnHZRu8Xs7ZXJ3Q6DC1jjxmSXwnPucfcPFF7NZsolYsXYVIui9OGGr0piA7XRaOnUK_3jjHRofUloJUZtEm5Z18oLPVXrui0uf1_VY2PxwZzIv8ikDvXMhIZVx5GSTQh_WJg3K3-Dz8AO9djBs4lSvaYFAMfUzb9iapVMsia8Bibbpa" width="320" /></a></div><br /><br /><p></p><p><br /></p>Hannah Ensorhttp://www.blogger.com/profile/12228122568368871809noreply@blogger.com0