Friday, 12 October 2018

New style keyring cards!

Today we launch the first few key ring cards in a new style!

They are exactly the same size and construction as the stripey cards we've been producing for years, but instead of bright and stripey, they are pastel and plain.

Why? Because some of our followers have been telling us that they love our work, but find the colours on the cards too bright.

So we mulled it over for more than a year, got inspiration a few months ago, got feedback on social media, finalised it a week ago....

....And they arrived today!


As stripey-border stock of cards gets low-ish we will be reprinting in plain-border. With over 150 card designs, it is likely to be months before we have the full range in the plain-border style. We will stock both border styles alongside each other. So when you chose a card that is available in plain, you will be asked to select stripey or plain.

We decided to use 4 colours on the new cards.
  • Lilac: Cards explaining a specific conditions.
  • Pale blue: Cards giving general information about symptoms or needs.
  • Pale turquoise: Cards that can be summarised as 'here and now, I am OK.'
  • Pale orange: Cards that can be summarised as 'here and now, I am not OK.'
With a few exceptions: The emergency cards will keep their bright red background, and the traffic lights cards will keep their strong red/orange/green. This is because, for these cards colour is an essential element of the communication they facilitate.

Some cards don't easily fit into a category, in which case we will do our best to allocate them a sensible colour.

We currently have 12 designs in this new style, and expect to print new ones every month or so.


You can find all the cards available so far in this new style here.

While our range of cards in this new style is very limited, we've added a new page to our website where we'll put all the cards available in this style in one place (as well as being able to select either stripey or plain border on the main product page). 



Wednesday, 12 September 2018

A day of Acceptable Flop.

As many of you know, I'm hypermobile.

A big part of managing my hypermobility is learning to use my muscles to keep my joints from flopping to end of range and stretching ligaments even further.

However, this doesn't mean I never flop. Sometimes I just don't have the energy for anything else. Mental or physical.

This morning I did stuff (an opticians appointment!) this afternoon I'm flopped.

Or, as I originally mis-typed it, flooped. Which also seems applicable.
 
Image: a stickman slouched at a computer looking exhausted. Text "Today is not a day for brain. Nor a day for enthusiasm. It is a day for temporary flop and gentle attempts at semi useful tasks."

I still need to try and avoid real extremes resting positions, but levels of curling up and supporting one body part on another (like head on hand, arm on knee etc) which are bendy but not at the limit of my range are fine. Flollopy fine.

I could run off determination and adrenaline, and force myself to do stuff - which gives the impression of energy. But that will mean I take loads longer to recover, and I don't need to. 

So instead I'm declaring acceptable flop for at least a few hours, which involves a lot of sofa, some gentle moving, and a few short tasks at my computer in whatever position works for me. Provided it's not at my maximum bendy positions.

Happy flooping to anyone else having a similar time - I wish you a speedy recharge!

Monday, 6 August 2018

Aren't most places accessible?

The other day I had to crawl up steps to reach a hotel gym.

It actually appears to fairly common in hotels. I think the unconscious bias of many designers/venue planners is that gyms are for people able to exercise, so stairs won't a problem - forgetting that disabled people need to stay strong and fit just as much as everyone else!

That got me thinking and I realised something.

While I usually do a lot of accessibility research before going anywhere, whenever I go somewhere new, and often when I go somewhere familiar, when I choose my outfit a key factor is: can I crawl in this?

Why?

Because so many places aren't wheelchair accessible.

In the past year I have:

Crawled to access shops.
Crawled to reach products.
Crawled to reach toilets.
Crawled to reach a shower.
Crawled to reach station platforms.
Crawled to reach gyms.
Crawled to reach my hotel room (and yes, I had booked an accessible room)

And probably more.

Because of broken lifts, or no lifts, or steps with no ramps, or narrow doorways or corridors, or products and display units blocking aisles.

And that is only in the last 12 months.

A few years ago I crawled onto a stage as a speaker.

I am privileged, I CAN crawl (and sometimes walk short distances too), and my chair is very light weight. For many wheelchair users each of those places would have simply been inaccessible.

Without my ability to crawl I would have been unable to get my shopping done, unable to have a wee, unable to shower, unable to attend meetings, unable to exercise, and found myself stranded in a foreign country at 9 pm with nowhere to stay. All within the last year.

I am also privileged in that when most people think 'access' they think wheelchairs. So wheelchairs are often the most accommodated 'group' of disabled person. But people often don't think hearing impairment, or visual impairment, or mobility impairment but still able to walk (evidenced by how often the signposted 'accessible' route involves a long detour) - or any of the huge range of often invisible impairments that will need adapting around but where requests are often met with blank looks or 'that's not in our policy'. So their experience of accessibility may be even worse than mine.

So yes, the law requires accessibility, but please don't confuse that with everywhere actually being accessible.

And if I have to crawl within your establishment, it's time to look very seriously at your access!

(Note: I have used the word 'crawl' - but some of these could technically be described as bum-shuffle or  slide. However, the 'get on to the floor and clamber any way you can to reach where you need to go' concept seems adequately conveyed by 'crawl'.)

Saturday, 28 July 2018

Drained. Time to recharge.

Drained. 

I don’t feel tired. 

I feel drained.

Not drained dry, but more like only a quarter full. 

I’ve had a busy few days both in terms of brain energy and physical energy. Some productive meetings and great gym sessions have been worth it, but today I don’t have the energy for sustained anything unless adrenaline kicks in. I need to slow. Do gentle things, but try to ensure that energy used is less than energy available so that I recharge. 

I can easily ‘push through’ and get things done anyway, running off adrenaline instead of ‘real’ energy. But experience says that will extract far higher payment later on - a far longer period of far greater symptoms. So why do it? 

This used to feel lazy.

So today is a Holiday Day. 

And instead of lazy, it becomes like when school was unexpectedly closed due to a fault with the heating. There is suddenly no ‘To Do’ list. 

Ok, so I have to drive home from the hotel I’ve been at, but even that takes a different shape. Breaks at service stations stop being calculated - trying not to extend the journey too much, and instead become something where I can nap for an hour, listen to an audio book while eating an ice-cream, or browse WHSmiths for books. (I’m so glad I always travel with stuff that makes the car very comfortable for resting!). Perhaps the 2 hour journey will take 3 - or even 5 hours to get home. But I will enjoy it. And recharge along the way.


In some ways what I do will be similar to what I do on a ‘bad day’ but with a very important difference - it isn’t done from necessity, but with a flavour of illicit freedom and luxury.

(This is blogged via my phone, sorry about any typos!)

Tuesday, 10 July 2018

PoTS, Pacing, and heat avoidance.

Like most of us with autonomic dysfunction of some kind, I've been finding this heat really hard to handle.

Even with employing my cool vest, spraying water on wrists and neck, putting my feet in cold water, and using fans around the house, I've been struggling. I've been getting an hour or two of work done in the morning before the heat builds up , then been restricted to horizontal for most of the rest of the day. Exhausted and barely functioning. And the effect has been cumulative - i.e. each day leaving me a bit more drained than the last. And to compound the problem, I've been unable to do much exercise because of the heat induced symptoms - and exercise is one of my main long term management strategies!

Then on Sunday a solution dawned on me. Hotels have air conditioning. Yes, they are ridiculously expensive. But on the other hand: FUNCTIONING!

Image description: hotel lobby area with chairs and tables, close up of laptop next to tea cup, and laptop users' feet up on a chair.
So I did it. Booked into an air conditioned hotel with an air conditioned gym for Sunday and Monday nights.

Bliss. (And hallelujah for the reward points my business stays have built up!)

I'm writing this blog from the air conditioned lobby at the end of my stay.

This break has taught me a few things:

1. Removing heat as a trigger doesn't stop me having PoTS.
Ok, so this sounds ridiculous written down, but I bet I'm not the only one who's done something similar:
Symptoms were so much better without the heat trigger, that I acted almost as though I had no triggers! I sat working in my air conditioned room. Symptoms were escalating and I was ignoring them. Fog and nausea got to the point of "I can't think....must think...try harder...must try...harder...." when it dawned on me that while I am now capable of sitting up without feeling horrendous, I still have PoTS - and I still need to manage it! This level of symptoms means "lie flat for minimum 15 mins and don't try to think". So that's what I did, and funnily enough it helped. And now I'm back to functioning ok again instead of still attempting to push through ever worsening symptoms.
I must remember that pacing is for all days, not just bad days! - If I'd paced and done my usual frequent wriggle breaks and snack trips I'd probably not have got nearly so bad. but hey, at least I noticed in the end.

2. Order kids portions for dinner.
In restaurants portions are often massive. Yes I can eat it all but it will make me so symptomatic that I'll be flopped for hours! So today I ordered from the kids menu. Much better. Next time I might also ask for a kids sized portion of an adult meal.

3. Doing more exercise will tire me out! Yes, it's good tired, but still may mean extra powernaps needed. Needing extra recharge breaks after exercise is totally OK, and doesn't automatically mean I'm getting worse.

4. Given how symptomatic I've been over the past few weeks, success is measured by feeling better when I leave than when I arrived. All work achieved is an extra bonus, but not something to 'push' myself for.

5. Balcony hand rails make excellent things to hold while having a wiggle break.


And finally:

6. Hotel lobbies are often air conditioned - and can be used for the cost of a drink from the bar. My mission over the next few days will be to find the closest quiet, air conditioned places that I can 'borrow' for a few hours each day.

So wish me luck as I play 'hunt the air con' in a small town with few hotels....but you never know, I might get lucky!

(and for the observant ones of you, yes, the project on my laptop screen in image 1 is the stickman pacing book in progress!)

(And if you are interested in resources to help people around you understand and accept some of the different approaches that life with autonomic dysfunction often needs, check out our autonomic dysfunction and pacing related products.)

Sunday, 8 July 2018

Autonomic Dysfunction and enjoying "the football"

I'm not a football fan, but I do enjoy watching the occasional match - espeically when England is playing.

And watching with friends makes it even more fun. Sharing the sense of expetation, the highs and lows seems to amplify them.

But this year although my local friends invited me to watch both the England / Columbia and England /Sweden games with them, I decided to watch them on my own. On a kind of gut instinct thing that I couldn't explain. Yes, I wanted to watch them with friends, and yet....

Half way through yesterday's match I realised why.

Sat in my living room half-watching it on the TV in the background while I did some cross-stitch I realised I had instinctively made some really wise condition management choices.

My PoTS (a type of autonomic dysfunction - see POTS UK for more info) is highly symptomatic due to this heat and I'm much more sensitive to all my usual triggers, including eating and sitting upright. But another trigger is stress - or excitement. Anything that gets adrenaline pumping. And while I love the hype of watching sport with friends, watching England in tense matches with some keen football fans would inevitably be adrenaline fuelled. I'd subconsciously realised that it would NOT be nice in reality. I would have spent both games a tacchycardic, dizzy, weak, nauseus mess from about 5 minutes in.

Even my cross-stitch was a condition management thing - preventing me from getting so involved in the the game that adrenaline would make me flop, but at the same time allowing me to watch it and enjoy it. So when we won I didn't yell and shout. I smiled to myself and gave a nod. We did it. Well done team.

It feels very odd writing this. It seems strange that by distancing myself I enjoyed it more. And yet, that is how it is.

So for our next match I will definitely be employing the cross stitch again!

Monday, 7 May 2018

My boots. The end of an era?

I've been a boot-wearer for well over 10 years now. For almost as long as I've been disabled.

My Doc Marten's (with zips) stabilise my ankles enough to help my ankle stability without restricting the joint. And they are comfortable.

But they are also beautiful. And I have a wardrobe full of clothes chosen to look good with my boots.

They've become part of my style. They get comments when I'm out and about taking the focus off my wheels and on to fashion.




Many of my boots are starting to look a bit tired - despite my polishing them sometimes. Yes, I genuinely, old-fashionedly, polish my boots.

Then, a few days ago, my hot pink boots died. The zip broke, and the patent leather is much cracked too. It's sad, but they'd had a good life. They even went to the House of Commons! But an era has ended. I will no longer be Hannah-of-the-pink-boots.

But I haven't only had Doc Martens (with zips - look, the zips are important to me, ok? It's like a skirt with pockets. Any boot related compliment is responded to with a variation of "And look, they have zips!")

I also had a great pair of walking boots - bought a year or two pre-disability. Sturdy, insulated, grippy. They made a huge difference to the stability of my walking when outside - meaning I could walk a short, assisted walk in snow. Trust me, that's an amazing feeling for someone as wobbly as me! And they kept my toes warm when off-road wheelchair-ing in the snow.

Another thing these walking boots did was protect my ankles and feet when I'm kneeling. I tend to do gardening sitting or kneeling on the ground. Usually sitting on the sides of my feet in some way. My walking boots meant that instead of squashing my feet and causing more ligament problems, I sat on the boot - and all was well.

Today my walking boots disintegrated.

I was doing my 'sit on side of boot' thing while removing some leaves from my patio when the sole peeled half off. Less than a minute later, the other sole did the same.

They are no more.

These 2 pairs of boots have seen me at my worst, from pre-diagnosis right through my journey towards understanding my body and how to live well with it improved.

But here's the thing:
Due to all the exercises I've been doing, I think my ankles are actually slightly more stable now. Not hugely, but enough that when I'm sat with my feet unsupported my ankles don't subluxate as much. And so I can walk in actual shoes some days. Previously I'd have to wear my boots to drive to the location (for example) then walk (in my boots - with zips) from the front seat to the boot of my car, get my wheelchair out, get into my chair and then change into posh shoes/summer shoes/sandals - and hope that the accessible loo was well enough set out for me not to fall between it and my chair! Now I can just wear those shoes or sandals right from home, and it's rather nice.

So....is this the end of an era? I'll still use boots where I need to maximise standing capacity, and I suspect I'll need to buy new walking boots, but it's also tantalising to think that I can go out and buy cheap shoes and actually be able to wear them!

Who knows what footwear I might use in the future?

Saturday, 28 April 2018

Accessible Glamping

A few weeks ago I was looking for somewhere I could go for a short recharge break. I love the glamping idea, but could I find the right one for me? My criteria were: wheelchair accessible, trees near, campfires allowed, and not on a big site with lots of people. My expectations were low. More like non-existent.

And then I found The Bulworthy Project, in Devon.

The owners live in 12 acres of private woodland which they manage - and in that woodland is a small, off grid, wheelchair accessible log cabin.

I stayed for 3 nights and LOVED it.

I enjoyed the outdoors, both in sunshine and rain. (Bring waterproof trousers and jacket!) The woods are small, but varied. And I often found myself just sitting - getting lost in the sights and sounds, or lying back and having a nap under the trees.

And I enjoyed the indoors - warm, cosy and dry. I even did some editing of the next stickman books!
Collage of 8 photos of trees, woodland clearings, more trees, beautiful trees, and a happy me.

 Collage of photos 5: 1. printed draft of a stickman book with cup of tea, 2. more trees, 3. camp fire and dinner, 4. camp fire, 5. After dark, camp fire in background, cup of tea and book in foreground.

Collage of 4 photos: Wood burning stove; happy me in a tree in the rain; chair stuck in 8 inch thick mud soup; photo taken inside cabin of music score, tenor recorder, and woodburning stove in background.

And yes. I totally plan to go back again!

About the cabin:

The official blurb is on the owners website

This is the official photo of the front of the cabin:


Internal access:

And I've added some access notes below.

This my sketch of the layout. The numbers correspond to the notes below.


C is written on the plan in places I can turn a full circle in my manual chair.

1. The shower. Very narrow, maybe 600mm. Water is heated by the wood burning stove, and once it's hot the tank stays hot for well over 12 hours. I asked if they had a shower seat - they didn't, so they bought one. And despite it being a big stool in a tiny space it worked really well. Currently no grab rails.

2. The toilet. No grab rails, but can get my wheelchair in to the room, and the small wash hand basin means it's easy to use from wheels or standing. The mirror is a bit high, but I'm sure that can be sorted by the owners.


3. The bed is quite high. This image shows me perched on the edge of it. It was about 15cm higher than the seat of my chair. On the plus side this means storage space underneath.


4. Fold out table fixed to the wall, with 2 folding chairs. I put the folding chairs under the bed so I had better circulation space.

5. Wood burning stove (also heats water) on a large metal surround so you can't knock into the stove itself when you go past.

6. Wood store (with locked cupboard of water heating tech above)

7. unit with a few shelves and hangers. (currently all quite high).

8. Kitchenette - sink, 2 ring hob, drawers/cupboards with utensils etc in, and a small camping fridge. All the storage is either on the countertop, or below it, so no high cupboards.

9. Doorway, with a threshold of approximately 1 inch.

10. Veranda: covered, wooden, approximately 1.3m wide (guesstimate)

11. Ramp. (guesstimate 1m wide) takes you up the side and onto the front veranda. It's wide enough to store a power chair in the dry (unless the rain is horizontal) and probably wide enough to turn most wheelchairs round - but my Off road chair (Magic Extreme X8) isn't great at small turns, so I chose to reverse back down the ramp using the steering lock.

12. Steps down to grass.

The view from the doorway into the cabin, and then the view from inside the cabin through the open door where you can see a path into the woods.

Outdoors:
The cabin is in a small clearing with a BBQ and a camp fire area, surrounded by young trees. The owners house is visible through the trees, but far enough away not to be 'overlooking'.

There is space to park on a lane about 3 metres from the ramp. There are main-ish roads close enough to hear an occasional truck, but not close enough to intrude.

There are no streetlights (obviously!) so bring a torch or two.

The accessibility of the woodland will depend very much on the individual and their equipment. I could go pretty much everywhere that was wide enough to fit my chair through, both along tracks and into un-tracked areas, although I avoided areas that looked excessively boggy. Well...most of them. I blameand got stuck and was cheerfully rescued by the long suffering owner. In fairness to the chair, that mud would have drowned a quad bike . (I have an Extreme X8. I think a standard power chair would have seriously struggled with much of the terrain and possibly completely failed, so please make your own assessment as to whether your chair would cope!)

In a manual chair getting around the woodland would be very challenging - there are some footpaths, but they are foot paths worn by feet, and the owners quadbike, and are going to be very affected by things like wet weather.

Any chair will get muddy. I'd advise having the wheelie equivalent of wellies that get muddy and are left on the veranda,  and slippers which stay clean and dry and are for use inside.

But part of the beauty of this cabin was that by opening the door or sitting on the veranda you are in the woods - with the birdsong. The BBQ and campfire areas are within a few meters (over rough grass, but close) so one day I barely left the clearing and still had a really lovely time.
Photo collage of 2 images: 1 photo of ramp to cabin, and 2 a campfire.
(The camp fire location is at the top right of the image with the ramp - you can see the log benches.)

Electricity: Solar power.
There are lights in the middle of the room, by the kitchen area, by the bed, and in the bathroom, and 2 USB sockets by the bed.
NO standard 3 pin sockets. So there is no-where to charge a power chair. My chair lasted staying there 3 nights ( 2 full days and 2 half days)  without charging and going on several 'walks' through the woodland each day, but not with much power spare. Speak to the owners if you might need to charge a power chair - but be aware that their home runs off solar power too so leaving a chair to charge overnight may not be possible. For a short break you may need to keep an eye on battery power and try and ration usage a bit. Like you would if camping in the wilds for real.

Internet:
The cabin has wifi. There's nowhere to charge a laptop, but the wifi gives good phone access to the internet.

Phone reception:
I had no phone reception at the cabin (EE) - but could use the wifi to make calls. In the woods where there wasn't wifi, there was often phone reception.

Owners:
If you speak to the owners (or email them) about access needs they can help - e.g. I asked about a shower seat and they bought one for my visit.
They are also very chilled and real about disability - not once did they say I was brave, or question my competence/ability to look after myself. (Explaining why this is remarkable would be a whole blog post in itself - but many of you will know what I mean.)

Would I recommend it:
In short, if you think this sounds accessible to you and you love being in nature: Yes.

Tuesday, 17 April 2018

Symptom diaries: Are they worth doing?

Every time a medical professional asks me to write a symptom diary my heart initially sinks.

The thought of having to focus on my symptoms and write them all down is just depressing and feels pointless. And it's not like writing them down is going to change anything is it!

However, they can be useful. Here are my tips for making it a useful and positive thing rather than a depressing one:


  • Record both activity (including food if it might be relevant) and symptoms.  The fact you felt rubbish on any particular day isn't very helpful. But the fact you felt rubbish the day after having to stand around a lot is helpful info.
  • Look for patterns. Good patterns as well as bad patterns - whether it's 'I seem to sleep better  if I do those exercises before bed' or '3 hours of concentrating leaves me totally splatted'!
  • Make changes based on the patterns you've spotted. If something always makes you worse, look at what you might be able to change about it that might help. If something helps, see if you can use that technique at other times too.
  • They can be words, but they can be graphs, diagrams or images too.



Graph showing my fatigue/flop levels, with the top of the page being 'fine' and the bottom 'legless drunk' (which is how my PoTS presents when bad), and along the bottom or the page the type of activity (sitting, standing, walking, chatting, eating etc) And the wibbly line of the graph shows how my symptoms are affected by things.
Things like this have helped me to realise things like that a short lie down when symptoms are bad can make a really big difference, and that talking while standing is something best avoided on all but the most fabulous of days.

And yes, I know the readability of that image is poor, but I wanted to show a real activity and symptom diary I drew. Not a 'produced for the internet' shiny perfect one. Because symptom diaries aren't going to be glossy and neat most of the time. They are real, and wobbly, and tea stained.

One of their most useful uses can be communicating with health care professionals - especially about long term hidden disabilities / invisible illnesses.

Never underestimate this use.

An HCP will have had lots of people come in saying "I'm so fatigued" - and some people mean they are tired. Or feel a bit bleh. Others will mean 'I can't function'. It's very difficult in a 10 minute consult for an HCP to work out exactly what you mean by 'pain' or 'fatigue', and exactly how much it is affecting you.

In addition, spoken words can be harder to process accurately than written words. With spoken words we seem to remember our interpretation more than the actual words used....which can be problematic.

With an activity and symptom diary, by simply handing it over you can communicate:
- exactly what effect things are having on your life
- that you haven't given up.
- your proactive self management steps (like recognising what makes you worse, and trying to tweak things to see if it helps). This is perhaps one of the most important things to communicate because when an HCP can see the patient is willing to put effort in, it motivates them to put effort in too. (Perhaps this 'shouldn't' be the case, but realistically, as human beings, this is pretty much hard-wired in)

And it does all this without you sounding like you are complaining, and in a way they can put on their notes so that section of notes is totally accurate!

A symptom diary is not a totally magic cure for all miscommunication and misunderstanding, but it can be a very helpful tool.

If you want somewhere to start, have a look at our exercise effect table - available from our website as a free download ( http://stickmancommunications.co.uk/Problematic-Exercises-form-download) or as a printed sheet (Problematic Exercises form Paper Version http://stickmancommunications.co.uk/Problematic-Exercises-form) - it's a great way to start this communication process with an HCP who wants you to exercise more at the same time as helping you find out what level of exercise actually works for you. The idea is that you write down what exercise you did and how long for/how many, and what the effect was. If the effect was too bad, you wait til you've recovered, then try a smaller amount/easier version. If it was easy, then you try more/a harder version - and keep recording what you do and how you respond.

So in conclusion, while I still don't like being asked to do a symptom diary (because it does take time and effort) I also love them for how useful they are in helping me to self manage and to communicate effectively with HCPs, and think they are well worth the hassle of completing.


Tuesday, 10 April 2018

Disability Stickers

In February, Stickman Communications released new car stickers, door stickers, and 'anywhere you like' stickers - which I designed.

These include:

  • Multiple colours of Happy Accessibility Symbol stickers (in large or small) which can be used inside, outside, on cars, mobility aids, shop doors, signposts, books, medical equipment - wherever they are wanted. 
  • Car stickers which focus on getting key points across with charm and humor - about the need for extra space, flagging up that not all disabilities are visible, and that the driver uses hand controls.
  • Door stickers to let delivery people know to allow extra time for you to reach the door, without advertising that the occupier may be vulnerable.


All these stickers are on our website: http://stickmancommunications.co.uk/Stickers where you can also see more information on the types of fixings available.

But why use silly stickmen on stickers with serious and important messages?

I often find that serious explanations don't seem to sink in. The every-day reality of living with a disability is so very different from the experience of a non-disabled person that it can be very difficult to explain why something is necessary (or to be avoided). If the level that they can relate to the situation is that 'It's a bit annoying when that happens' (for example if someone parks too close it's annoying because they have to sidle through the gap and do minor contortions to get into the car - not realising that for a disabled person they may then have to wait indefinitely until the owner of the other car has finished their day and returns - which could be hours). From this perspective, requests that they change their behaviour can be seen as creating drama or being demanding. Attempting to explain why this isn't the case can then be seen as further proof that we are over-reacting.

This isn't because most people are nasty - just that human nature is to see life from our own perspective.

I find that the visual clarity of the stickmen, combined with their charm, can get across this instant understanding where spoken words often fail - somehow bypassing a lot of the assumptions and preconceived ideas that create misunderstandings.

The other half of the why is: because I wanted them. I want to have something on my car that lets people know I need extra space. I don't want stickers on my car that are angry and get other peoples backs up, or which are dull and boring and convey my disability as a dull, official thing. My disability is a normal part of my life - and I love life. So the only stickers I want on my car are ones which have life to them.




Friday, 30 March 2018

My kitchen's a mess, and that's okay.

My kitchen is a mess.

It gets messy whenever I have a busy patch. Fatigue means I can't do everything I'd like to be able to. So it's normal for me that during a particularly sociable week, or one where work is more demanding than usual, housework doesn't happen.



This week's mess is because of a cold. Yes, it's just a cold. And not even a particularly bad cold.

But it interacts my PoTS in a way which makes my fatigue have a party.

As a result I'm curled up at home while my kitchen gets messier. I could possibly have managed it as my task for today, but I really really needed a shower. Now I'm clean - which feels amazing, but my entire available energy has been used.

But it's okay. As my cold goes and my POTS settles down I will sort it. Perhaps a bit at a time. It's not lazy. It's not shameful. It's a messy kitchen that is going to stay messy until it gets tidied because my top priority is getting over this cold without aggravating or worsening my conditions any more than necessary.

And actually, I think I'm going to buy some disposable plates and bowls when I next go shopping so that when I'm next a fatigue zombie I can eat without creating dirty dishes!

But until then...

sleeeeeep.

Saturday, 17 February 2018

The importance of slowing down.

Something I've realised recently is that I often do things at speed.

I don't mean I run - but I often rush. Or even make the movements within the task I'm doing very fast.

And it's not just big things, but even little things like reaching for a cup.

I can go from resting to active in a split second.

I think it's a subconscious "I've decided to do it, so I'll get it done. Now."

But whatever the reason, my body doesn't like it, and it's really kinda unnecessary - so I've decided to put effort in to slowing down.

I think, for me, the effect is a combination things.

My POTS is very negatively affected by adrenaline. If I get a kick of adrenaline, if I'm lucky I kinda feel OK for a bit but later I crash out. Other times I might go a shaky and floppy and feel awful straight away for a bit. And sudden changes can put me into 'fight or flight' adrenaline mode.

Sudden changes of posture or speed or going still to active also don't give my autonomic system time to adjust properly - which of course also annoys my POTS.

In addition, because of my hypermobility syndrome, I injure myself less and am more stable when I move more slowly, and with an awareness of my body instead of just hurling myself at a task and hoping for the best.

Writing it on here makes it sound...well....pretty obvious. But like most things, it's kinda only obvious once I've realised it!

So here's to taking a slower pace, with a view to improving fatigue and injury management.




Saturday, 3 February 2018

Disability, 'ought to' and decisions.

Today I said I'd do some gardening with my Mum.

So I ought to do it.

I also ought to do the laundry as it's piling up.

And I ought to have a shower.

The list goes on.

But when I got out of bed I found I was weak and wobbly with fatigue. Not 'feeling tired' but being physically too tired to actually make muscles do what they need to do. So a simple 'sit to stand' which I can usually do with ease has become a significant, wobbly, challenge. If I'm gentle with myself it will pass - lots of rest and gentle movement.

So I made a choice.

There is no 'ought'. Only decisions.

And I have decided to do what will be best in the long run - what will enable me to be most healthy, and to get most done in the long run.

I can choose whether to do the gardening or not.

I would love to do it. I was really looking forward to it. But I need to recover first. If I go, my fatigue will massively increase and recovery will take a lot longer, I 'll be too fatigued to actually help much, and there's a very high chance I'll injure myself.

So I have chosen not to go. I've messaged Mum to let her know. She's fine with that, and hopefully we'll rearrange some time.

Laundry? That can wait. There are still clothes in my wardrobe.

Shower? I'll see how things go.

Because 'ought to' clouds my judgement. It's so often based on other people's (or even my own) unrealistic expectations.

Of course, sometimes 'ought to' might seem a good thing.

Today I really ought to pace myself, and recharge.

But if I pace just because I 'ought to' my day becomes a drag. A burden of having to do things - and having to not do things that I really want to do.

So I still have no space for 'ought to' to rule my life. It can flag up where decisions need to be made, but then I can choose. I ought to pace - but what do I choose to do?

Yes, I choose to pace today.

So I will. Because I have decided to.

And that is empowering and positive.

That simple decision means today isn't about being restricted by obligations, but about being empowered and proactively living well.

Because I have made that choice.

Keyring card with an exhausted looking stickman, saying "Sometimes I need to push myself to do more and other times I need to recharge. Right now I need to recharge. Don't worry. I am looking after myself and will be ready to face the world again soon."

Thursday, 1 February 2018

"Silent Witness" BBC Drama, disability, and my reaction.

The latest episodes of "Silent Witness" made compelling watching.
At time of writing it is available on BBC iplayer. Episode titled "One Day" (it is in two parts).

A story that was heartbreaking, but very well told.

I've tried to avoid spoilers here, but I do a reference something that happens to Clarissa - because it's important.

(This post might need a trigger warning for ableism. The program should contain TW for extreme disability abuse and rape - but I don't discuss either of them here)

For me, parts of it resonated. Resonated deeply in a way that I've never experienced with something I've watched on screen before. They were little moments that were such real parts of life with disability that it took my breath away.

I looked into the eyes of an actor, and saw my own fears and experiences.

No, no-one has ever tried to kill me - but there were two moments while watching Liz Carr as Clarissa which were particularly real for me. Too real.

One may seem insignificant.

The team were sat round having a discussion about the case. One chap had the attitude that it wasn't such a big deal as the people affected were disabled. He couldn't see anything remotely amiss with his attitude. He was completely unaware of his prejudice - and equally completely clinging to it. Clarissa was sat there. Tense. Then she caught the eye of a colleague, shook her head, mouthed 'I can't' to a supportive colleague, and left.

I've done that.

I've done that.

I was in a meeting where key people were discussing access issues - which had been rumbling along for ages. I'd tried everything I could to get one particular person to see me as a person making sensible suggestions, but all they could see was someone disabled, that it wasn't worth going to any effort or inconvenience for. Was I worth the hassle? No. Literally. Saying "We can't do that just for her". Her sentiments echoing closely the words in 'Silent Witness' - "We'll get the appropriate amount of resources on this." with the clear indication that 'appropriate' meant minimal.

During my meeting, I reached that point. I couldn't speak. Every fibre of my being wanted to scream my humanity, my intrinsic value as a person. But I'd already tried everything I could think of, and I'd watched others try without success too. The weight of words and emotions and injustice choked me. I had to escape. I had to breathe. I ....can't put it into words. If you want to know what it felt like, watch that episode. (a bit over half way through part 2). Watch Clarissa's face. The abrupt departure trying to remain dignified and professional while your internal world feels like it's teetering on the brink of collapse or explosion.

I've never seen it happen to someone else before.

And when I did, I didn't see an actor. I saw myself. In a situation all too real. I actually had to re-watch that section to check I'd not imagined it. And I doubt I'm alone in relating so strongly to a scene of such stubborn and total minded conviction that disability is inferior and disabled people are a burden.

The second bit that got me was when someone unhooks Clarissa's controls and wheels her down the corridor while she calls out for help. And no-one takes a blind bit of notice.

Now, I will make it clear that no-one has ever tried to kidnap or kill me. And lets face it, such moments of danger and drama are part and parcel of all crime dramas. And it wasn't when Clarissa was actually in danger that got me - it was that walk down the corridor.

Why?

Because I am wheelchair user.

As a wheelchair user, strangers periodically take control of my chair without permission - pushing me in directions I am physically powerless to change or stop, sometimes having ignored my explicit requests not to.

This has always been incredibly scary. A fear deep routed. Subconscious. Some recognition of danger that my conscious mind hadn't processed.

I watched Clarissa being pushed down the corridor, and I knew.

I heard her clearly stated wishes ignored simply because she was disabled, and I knew.

I saw another person physically take complete control of where she was going, with no more regard for her wishes or humanity than if she were a potato, and I knew.

I knew.

Because every time I'm pushed without warning, or without my permission, by a stranger, especially when I've specifically asked them not to, there is a part of me that fears my experience will echo Clarissa's. And what if Jack doesn't arrive in time for me?

And it is terrifying.

But they meant well, surely that counts for something?

Not really. No.

Someone moving a sack of potatoes to a 'more appropriate storage location'  is also well intentioned. Pushing me without permission (in any but the most exceptional of situations - like being about to be hit by a falling meteorite) involves the same amount of regard and respect for my life and my choices as you do a potato. And I am not a potato. I am a person.

All it takes to alleviate this fear is the knowledge that the person with me is listening to me, respecting me, and responding appropriately. The knowledge that they see me as a person, who's life is important and choices valid.

Such a small difference - and yet so significant.




Friday, 12 January 2018

Pacing decision chart: description

I've had a few requests to create a text description of our pacing decision chart - or "To Do or not To Do" chart, so here it is:

Title:
"To do or not to do?" pacing and activity decision chart, produced in association with the Hypermobility Syndromes Association.
(Note: This is a simplified version. The full version would fill a book. Exact processes vary between individuals.)

This chart has boxes with questions in - each box having a yes or no answer - which sends you down different paths to help you reach a conclusion about whether to do an activity or not (or to help explain your decision to someone else).

(Note: Most activity can aggravate symptoms, so it's not about avoiding pain and fatigue, but trying to keep them manageable. Trial and error is required to find this level, and it can change over time.)

Pathway 1:
Box 1: Will it cause so much pain or fatigue that I can't function for days?
No.
Box 2: Given current symptoms, will I be able to complete the task?
Yes.
Box 3: Is there enough recovery time between now and when I next need to function?
Probably:
Outcome: Let's do this thing!

Pathway 2:
Box 1: Will it cause so much pain or fatigue that I can't function for days?
Yes
Box 4: Can I make it manageable by: splitting the task into smaller sections? or using an adaptation or aid to make it easier? or asking for help with challenging parts of the activity?
Yes.
Box 3: Is there enough recovery time between now and when I next need to function?
No.
Outcome: Best not. It's OK for an emergency, but not for routine tasks.

Pathway 3:
Box 1: Will it cause so much pain or fatigue that I can't function for days?
No
Box 2: Given current symptoms, will I be able to complete the task?
No
Box 4: Can I make it manageable by: splitting the task into smaller sections? or using an adaptation or aid to make it easier? or asking for help with challenging parts of the activity?
Yes.
Box 3: Is there enough recovery time between now and when I next need to function?
Yes.
Outcome: Let's do this thing!

Copyright Hannah Ensor 2015.

There are other permutations but this should give a good overview of the chart.

Tuesday, 9 January 2018

Off-road wheelchair-ing in Bideford, Devon.

Over Christmas my mum, my siblings, their partners, and all my nephews and nieces (total 27 people!) stayed at a lovely place called Hallsannery House, in Bideford, Devon, for the week. It was great fun. Of course, my X8 off-roader came too.


The whole holiday was fabulous, but this blog is about the trips out on my X8.

On the second evening we went on a short walk along the coast path - it was wet, windy, and fabulous to be out - wrapped up warmly and going places that aren't 'wheelchair accessible' is so special!




In the grounds was a small woodland area, complete with rope swing. So on a drizzly afternoon, with waterproof trousers and coats, and a plastic bag to keep my controls dry, we went off to explore the grounds, going through rough fields with ease - although we didn’t attempt the long flight of stone steps. We spent ages at the rope swing - it turns out that grabbing the rope and driving quickly up the bank until I have to let go makes for fabulous swinging!!

It was raining a bit more than I realised, so we looked like drowned rats by the time we got back. A full set of dry clothes and hot chocolate quickly resolved that. The powerchair was soaked too - but fortunately the slate floored ‘boots’ area of the corridor by the back door was wide and wheelie accessible, so the X8 could dry off in the centrally heated  house - and be fully dry before recharging it ready for more adventures. (Generally speaking, electrics and water don't mix!)

The next big use was a Boxing Day walk along the beach - Westward Ho!. Yes, it really could climb up the stone barrier!

But it was pretty tricky driving, and required me to do a fair bit of leaning to keep the balance, and once at the top I realised the downward section there was steeper, so I opted to go back down the way I'd come up, and go for the easier option of the ramp over the stones a bit further along the beach. It wasn’t really wheelchair accessible, but with a few well-placed stones to make the 8 inch initial step "X8 accessible", it was fine.

We then ran around chasing waves, throwing the frisbee, playing with the remote control car that could transform into a boat, and generally ambling along.







(Yes, I did drive into the water - a lake sized car-park puddle was irresistable. I had to be careful because salt water will make things rust quicker - and you can't power-wash an electric powerchair!)

Until it started to rain slightly...then - yells of delight - "It's SNOWING!"

Which lasted all of 10 seconds.

Because the hail arrived. Which sent us laughing, stinging, shrieking and freezing back to the cars, and the warmth of Hallsannery.

It was such a fabulous trip, and it made me fall in love with the X8 all over again.

However, it turns out that my waterproof trousers aren't so waterproof. Having sat in a puddle of melting hailstones for a while....let's just say, I was left with some unfortunate wet patches.

10/10 for the X8.

 2/10 for the waterproof trousers - which I will be retiring and replacing with a better pair forthwith.

(For more blogs about the X8, see our off-road adventures page.)