Monday, 22 May 2017

A tip for wheeling in the rain.

It's a while since I've wheeled in pouring rain.

I quickly remembered that I do not like spending ages sat with wet knees. 

So, as I sprinted from parked car to station, rather smugly, I adapted my pushing posture. It worked! Dry knees......


..but within 2 minutes reality had seeped through.

I was sat in a puddle.

Take it from me: Wet knees is a lot nicer than.....the alternative!!

I'm now seriously considering investing in a wheelchair poncho of some sort.


Tuesday, 16 May 2017

The catch 22 of hidden disabilities/symptoms: Communication methods

It goes like this:

If I talk about my symptoms I am told I am being negative. That I need to stop focusing on my condition.

If I don't talk about my symptoms then people don't know how I am and therefore have unrealistic expectations - leading to frustration and misunderstandings at every turn.

It's a lose-lose situation.

However, there are various things that I've found have helped me get out of this loop.

One is to switch up the methods used. We are all familiar with the basic communication strategies, and for this blog I've categorised them as follows:

Written (formal)
Written (informal)
Analogies
Code words
Illustrations
Visual cues
Actions
Decision making

Written (formal)
Medical letters, journal articles, official websites.
These are good for communicating with health care professionals (HCPs) who are interested in knowing more detail. (Note: it's best get a conversation going and build a rapport with the HCP before asking whether they'd be interested in a journal article you think is relevant - if you walk in and hand it over it basically communicates "You don't know what you're doing and I think you're stupid" - even if that's not what you mean!)
Be cautious about using these resources with friends and family. They can give information overload, on websites information is general - so readers have no idea whether you are affected severely, mildly or somewhere in between and may end up even more confused. They are more effective with people who already have a good grounding but want to know more.
Emergency care plan
Having emergency info handy is very useful. Even if you are capable of speaking, trying to cover everything accurately in an emergency situation is very difficult, having it written down clearly makes it easier for everyone.
Medical alert cards:
These can be great, but make sure the print on them is big enough to be read easily, and that they only give useful information. for example, they don't need to say "affecting 1 in 2000 people" because it's not useful info. And unless they are only for medics, avoid ones in med-speak because many people will have trouble relating to them. Doctors can understand normal English too.
Our keyring cards are actually more informal in the way they are written, but have had excellent feedback from use in both medical and social situations.

Written informal
Personal letters explaining how you are affected. 
Adapting a 'dear loved one' template letter from a relevant charity (such as this one on the HMSA website http://hypermobility.org/a-letter-to-a-loved-one/) can be very helpful in creating a background level of understanding.
This means you can explain how you personally are affected in a way that gives the reader time to process the information at their own speed.

Flashcards can also be a great way of communicating a key point about how you are or what you need - a way to make an 'invisible' aspect of your condition 'visible'. Our experience is that they work best if they are light-hearted, not too stroppy, and get straight to the point. At Stickman Communications we love flashcards (or keyring cards as we call them) - we have over 150 designs so far covering everything from autism to diabetes, from tourettes to fatigue and pain, from go away, to please help me. But you can also create your own.

Analogies
One reason hidden symptoms like fatigue are so hard to communicate about is that unless you've experienced it, it's an alien concept. So explaining it in terms of something familiar can be very useful.
I use this 'shopping on a budget' analogy quite often.
Another popular one is the spoon theory (where a spoon is a unit of energy, you only have a few spoons, and each action you do uses up spoons)


Code Words
These are fabulous ways of communicating without sounding negative. "I'm out of spoons" or "Whose stolen my spoons!" are great ways of saying fatigue levels are high - if everyone listening knows the spoon theory! Code words are therefore best used within groups that know you a bit, or where people are familiar with the code word. In the online community of people with hidden disabilities and fatigue, the 'spoon theory' is so well known that most people will understand spoon references. but use it with family or colleagues and you are likely to need to give a full explanation.)

When I worked in an office, we had the 'Vodka Standard'. When my symptoms escalate, I get symptoms similar to being drunk (due to POTS). And if I get really bad, I need to lie down and cool down - but the symptoms mean I often don't realise how 'drunk' I am, so it was essential that people around me could notice and point it out. Instead of laboriously describing symptoms, things like "Hey, you aren't drunk today!" or "keep an eye on her, she's 2 vodkas already" were common place, amusing, and helpful.

However....

A new colleague started in our section. Halfway through the day "You're drunk, Hannah. 2 vodkas?"
Horrified, my new colleague sat thinking that I was literally drunk at 11:00am, at work, and everyone was treating it like it was normal! - The code was explained and all was well, but it shows how important it is to use code words with care!

Visual analogies/illustrations
These can be graphic or descriptive. I love them. Because they communicate accurately, but with a slight chuckle which, as Terry Pratchett wrote, "helps things slide into the thinking".

 So when fatigue is so bad I can scarcely lift a finger, and I feel tetchy, grumpy and grey, it's a rhinoceros.

Or when brain fog has stolen my short term memory, word recall and general ability to function at the required level, the zombie references creep in.


The possibilities are endless and you can invent any that work for you.

Similarly Internet memes can be useful.  For example for those days when I feel a bit better than a recent hideous patch, but am still very symptomatic I might use phrases like 'fragile-ly fabulous' from this image:

But remember: 50 memes in one day trying to explain your entire condition will be overload and ineffective. One or two showing the key points relevant to that day is much more effective.

Visual cues
These are another one I love.  Flash cards can come into this category, but so do 'traffic lights' type concepts.

Like our 'traffic lights' wristbands, or wearing coloured badges with red meaning 'bad day' green meaning 'good day' etc. Things which communicate instantly with those who need to know, without any conversation having taken place. these can make life so much easier and remove the need for a lot of talking about symptoms while still letting people know how you are so they can adjust expectations accordingly. Even things like having a 'bad day' T-shirt that family knows if you are wearing it, it means you are having a bad day can really help.

Actions
It's important to remember that actions speak louder than words - so if you hide the symptoms that your actions cause, the people around you will never understand. How can we expect them to understand what we don't allow them to see? This is covered in a previous blog: 'when actions speak louder than words'

Decision making
In my experience, one of the hardest things is when I say 'I can't do that' for good reason, and the response from friends or family is to try and persuade me that I should do it. Sometimes I might be underestimating myself, but often it's a communication problem: they are unaware of the thought process behind the statement. Perhaps I know I'm really busy the day before and so will need recovery time. Perhaps there is something really important the day after which I need to pace to be able to manage. So by involving that person in the decision making process they can gain a lot of insight. And can also start to understand the barriers and even start helping think up things that will make things easier to do.

I might start off by saying "I'd love to join in, can you help me see if it's doable?" and then I effectively follow this process:

So in summary: 

There are lots of ways to communicate. If one isn't working, try another technique.

Creating understanding is like building a house, it's best done one brick at a time, with careful planning - each brick in place is a little bit of progress. Dumping a whole heap of bricks in one go just makes a mess. 

Tuesday, 9 May 2017

"The things we do for disabled people"

This blog is me trying to process a conversation I had earlier.

Today a chap from a UK company called me, trying to solve a communication issue that they weren't familiar with for a young girl living half way round the world.

It wasn't an issue that our products are designed for, but I could point him in the right direction. It was nice to be able to help.

I was thinking to myself how nice it was to randomly help someone to help a random stranger who was struggling with an issue 1000's of miles away.

And just before we ended the call he commented:

"The things we do for disabled people!"

I could practically hear the eye-roll. And the 'aren't we nice for doing this for them'.

Now I totally get that this was a really random chain of people trying to find help for a total stranger when the solutions weren't in our spheres of expertise.

"The things we do for total strangers!" - Oh yep, definitely. It is very random the things we sometimes do for strangers. Or even "The times we go way beyond our job description!" Definitely.

But it wasn't. It was "The things we do for disabled people!"

I didn't respond because I was blindsided. And that was the end of the conversation.

I am a disabled person. Am I such a burden that anyone trying to help me solve the multiple accessibility issues I face can be expected to eye-roll?

Helping a disabled person get access to basic communication is not eye-roll worthy, it's an obviously necessary and important thing. Sure, it can take effort. And it might not be my job. But trust me: the effort of the 'helper' rarely exceeds the effort and frustration of the disabled person trying to cope with the lack of access they have. I spent 2 minutes on the phone helping that child. Perhaps that chap on the phone had spent a couple of hours researching. But the girl who had no effective communication - she's having to try and resolve this 24/7, trying to find a way to make herself understood.

By all means remark on the extraordinary links the internet has enabled. And the random enquiries that businesses can get that mean we end up going way outside our roles to investigate.

By all means say 'I'm sorry, I can't help with that' when you get an enquiry you can't help with.

But don't make the mistake of thinking that helping create access for a disabled person is a tedious task you are heroic for doing. Because that, quite frankly, is insulting.

Sunday, 23 April 2017

Pacing: Swap, don't stop.

My motto for today is 'swap, don't stop'.

It's from our 'Pacing, handy hints' poster, and it's been just what I needed today.

Both my pain and fatigue levels are pretty high. What I feel like doing is curling up on the sofa and not doing anything.

And it's totally right that I do need more rest today, but actually, today, for me, good pacing isn't about stopping everything. It's about swapping.

So I got up, and then rested and watched some TV. But I keep swapping between watching TV and doing little tasks. Or more correctly: sections of tasks.

Here are some of my accomplishments so far:

  • tidying my bed
  • stretching
  • sorting the washing
  • putting a wash on
  • tidying my bedroom floor
  • stretching
  • sitting on a stool to empty the dishwasher and put everything onto the side
  • hanging up the washing
  • writing this blog


I think my next 'swap' break will be putting the clean dishes away into cupboards. You see, I find pacing for when I'm this fragile much easier if I split the task into it's small sections before I start. So when I emptied the dishwasher - I had already decided that I would phase one (empty dishwasher) separately from phase 2 (put clean dishes away.) This way I'm much less likely to get caught up in the task and overdo it.

And in between each task I have down time. I'm currently watching Ellie Downie's gymnastic amazingness at the European championships on BBC iplayer.

But I'm also being careful to make sure that my down time isn't flopping into positions which aggravate my conditions - but is well supported. (i.e. lots of cushions!)

So while some days my 'swap don't stop' is about switching between tasks, today's 'swap don't stop' is about switching between rest and gentle movement rather than spending the whole day flopped.

And so far it's been a success. Pain and fatigue aren't escalating, but at the same time I feel a great sense of achievement because despite the symptom level, I am achieving lots of little things that become bigger things. I just have to keep remembering to stick to very short tasks/sections rather than trying to complete larger tasks in one go and then crashing out - and having to stop entirely.

I've already achieved far more than I thought I'd manage all day with this symptom level. But the best bit is that I've done so without worsening my symptoms.

Thursday, 20 April 2017

Pain self management: First choice or last resort?

As regular readers will realise, I love self-management and it's really helped me live well with my conditions. Along the way I've met many others on a similar journey, and one of those is Pete Moore of the 'pain toolkit'. I'd highly recommend popping across to see his toolkit resources. Here's a few comments from Pete about his experience and the work he does.

  

Who is Pete Moore?

You can read all about me and what I do here (hyperlink https://www.paintoolkit.org/pete)

The Pain Toolkit
I started to develop the Pain Toolkit (hyperlink www.paintoolkit.org) in 2002 and over the years it’s become a go-to website for information about pain management. Please come and visit and say hello. On the site there is lots of up-to-date news, as well as pain self-management information for healthcare professionals and people with pain.

Is pain self-management your first choice, or last resort?

With the ever-increasing problem of persistent pain in here in the UK and around the world, educational pain self-management has to be the first choice for both people with pain and also healthcare professional.

According to the Chronic Pain Policy Coalition ( http://www.policyconnect.org.uk/cppc/about-chronic-pain) there are now 28 million people here in the UK living with persistent pain. This figure seems to keep doubling every four years.

What is the answer to solve this problem?

It’s quite simple really. Educational pain self-management needs to be taught to all healthcare professionals while they are in their medical schools when in training and not learnt on-the-job as it is now.
Chronic Pain Policy Coalition

One other problem for healthcare professionals is lack of time to promote educational pain self-management within a timed based appointment. I have addressed this and why I now provide 1/2day Pain Toolkit workshops ( https://www.paintoolkit.org/workshops) for healthcare professionals to give them some extra skills to promote educational pain self-management within timed based appointments.

The Pain Toolkit

I started to develop the Pain Toolkit (www.paintoolkit.org) in 2002 and over the years it’s become a go-to website for information about pain management. Please come and visit and say hello. On the site there is lots of up-to-date news, as well as pain self-management information for healthcare professionals and people with pain.


Wednesday, 19 April 2017

New product: consultation. 'Token' communication units.

For much of the past year we've been working with Bowman Additive Production to create a wearable alternative to our popular wristbands, but which have greater flexibility of fit and use.

The unique unit now taking shape is sturdy, lightweight, washable, durable, latex free and made of non-toxic, medical grade plastic, with a slightly textured, tactile finish.

This is the latest prototype - it's nearly ready to pilot!


(copyright (c) Hannah Ensor 2017)

The unit itself is just under 4cm square and less than 1 cm deep, and allows tokens to be easily slotted in and out.

The unit can be clipped onto a lanyard, keyring, or used on the badge-reel shown.

There will be various tokens available - each one double sided allowing tokens to be changed quickly and easily. Longer term we plan tokens for can speak/can't speak, need help/can do this myself, recharging/recharged - and more.

But we have to start somewhere: the first token set will be 'traffic lights' - the equivalent to the wristbands, with red, amber, and green - and a 'condition management in progress'.

These are the current drafts of the 'traffic lights' tokens.


Prices aren't finalised yet, but the unit is likely to cost around £10, and the tokens £2.50 each (although we are working to reduce these costs, and buying them as a 'pack' will be cheaper.)

We'd love your feedback or thoughts on this 'traffic lights' sets - and on the unit.

Feel free to send feedback as a comment one here, or via twitter (to @stickmancrips) on facebook (to Stickman Communications by Hannah Ensor) or via email (admin @ stickmancommunications.co.uk - without the spaces) But be quick! Production isn't far away......


Saturday, 15 April 2017

Hidden disabilities/symptoms - when actions speak louder than words.

The trouble with 'hidden' or 'invisible' disabilities and symptoms is that they can't be seen.

But this also applies to 'visible' disabilities where there are symptoms that aren't visible. Effects that are hidden to the casual observer.

Like pain or fatigue.

They can't be seen.

"Ah," my thoughts say "but it is visible on my face - you can see from my expression that I'm in pain."

Really? How does an observer know whether it's physical pain, mental distress, stress, feeling down, angry or even just concentrating?

These things can be so obvious to the person experiencing them that it's hard to remember that they aren't so obvious to others.

But there's something that makes it even worse.

And that is 'Actions speak louder than words' - trite but true.

Who else has done this:

You are asked/invited to do something. You say no. They pressure you. You cave in and do it. Then once you are alone in the safety of your own home you crumple - the symptoms you've been struggling to hide and ignore all day overwhelm you as your defences come down and the energy required to 'pretend' runs out. It then takes days to get back to your normal level of symptoms.

When this happens to me, not only am I left struggling to recover and unable to go about my daily life because I pushed too far, but the other person then seems to get even more pushy, ignores my symptoms, insists I can do more if I push myself, and even hints that if I changed my attitude I wouldn't be disabled.






The trouble is that actions speak louder than words. The 'foggly eyes' of a stickman aren't visible in humans. What I communicated was that I could do what I said I couldn't. They didn't get to see the effects. They saw me coping when I said I couldn't. They didn't see me crumple - they saw me upright and functioning. I might have tried to explain my symptoms - but I also hid them. So because actions speak louder than words, without meaning to, I 'told' them I had done it, and was OK.

I can't expect people to understand my normal if I don't let them see them my normal.

I don't mean I think I should go round trying to make every symptom constantly visible - that would just be weird and kinda depressing.

But I do mean I pace and take breaks when I'm with friends - go and sit in a quiet corner, I lie down randomly. I tell visitors it's time to leave when my symptoms are escalating. And it's very rare that I say 'I'm fine' to someone if I want them to understand my normal. I can't blame them for not understanding things that I've hidden from them.

Yes, this can be tough to start with - as the people around us have to go through a learning process. There might be awkward questions. There will be 'being different in public'. But my experience is that this 'allowing people to see my normal' has over time enabled me to do SO much more with fewer symptoms - because the people around me make allowances for my normal and don't pressure me into doing things that won't help me.

This is why I started to draw stickmen.

To show my normal in a way that wasn't negative or complaining, so that others could learn my normal, and my quirks that help me to live well with my conditions.

And now it's why I run Stickman Communications.

Because stickmen can make the invisible symptoms visible. They help me explain my normal in ways that are understood and are not seen as being 'negative'- and as a result also help me to stand my ground when something will be too much, and when I choose to do something that I know will push my limits, I'm not afraid to let people see bits of exhaustion, or pain coping techniques.

True, they don't magically solve all issues, but for me they've been a great help.

  
     


     





Thursday, 6 April 2017

An afternoon stroll

Yesterday afternoon I realised I needed to charge my powerchair for a trip on Saturday.

I reached the garage, standing in the warm sun, with the fresh coolness of a spring breeze on my face, and then decided it would be a much better idea to take it for a stroll and test out the local footpaths.





Bliss.

My X8 is now charging, and my OS map of this local area has it's first 'confirmed stile free & offroader accessible' footpaths drawn on :)




Tuesday, 4 April 2017

The importance of sitting properly...

Yesterday evening I was making the most of the mild April weather: Sitting with my legs curled up, on a beanbag, out on my patio, leaning back against the house, wrapped in a blanket, reading and enjoying the cool, fresh air of spring while listening to birdsong.

Bliss.


Until I moved. My sacro illiac joints (SIJ's) (a bit below the dimples at the top of each buttock) had quietly and gently gone on strike. Giving the feeling of being bitten mid buttock at the slightest change in pressure on my tailbone.

Experience says: straighten out, and take the pressure off. But I couldn't stand up from that position, and every move was stabbing! The best option would be to have someone pick me up bodily off the floor - so I could straighten without any pressure on the offensive, butt-biting joints. But I live alone.

I sprawled and attempted to inch my limbs into the right positions, the beanbag complicating matters further.

Inch, wince.

I was struck by the inelegance of my position.

Wry smile, inch, wince.

This could take a while. My legs are getting cold.

What if I have to call a sibling to pick me up? How would that conversation go?
"Hi....you got 10 minutes to spare?....I sat on the floor and my butt fell off, and now I'm stuck!"
"Any chance you can pop round?....I'm sat on the patio with a mis-aligned butt and can't get up!"

The mere thought gave me the giggles. Not helped by imagining the laughter such a call would generate.

Laugh, wince, inch, wince, laugh, wince....breathe!

Did you know that when you laugh your pelvic floor tenses and pulls on your SI joints? I was now being stabbed by each attempt to move, and bitten by each laugh.

Laugh-inch, wince

Hallelujah!

I made it! Legs out in front of me - practically lying down, gently lifting the pelvis - and sure enough my SIJ's returned to normal-ish.

Gonna make sure I sit properly for a bit as the butt's a bit grumpy today, but hey, at least I didn't have to call for back-up!



Thursday, 16 March 2017

Hypermobility spectrum disorder: what it means to me.



[This interview was published yesterday by the HMSA. Copied here in full]

Our volunteer team took the opportunity to ask HMSA HSD Ambassador and Patron Hannah Ensor a few questions about how the changes to the classification of hypermobility syndromes might affect her.

What is your diagnosis?

My official diagnosis is "Joint hypermobility syndrome". (JHS)

Over the years it has flickered between JHS, HMS and EDS hypermobility type, depending on who was writing the letter, and what I'd told them.

So although EDS is listed on some letters, I've only ever been formally diagnosed with JHS.

What do you think you would be classified as under the new system? (see here for an overview of hEDS, and a basic update for clinicians)

From what I've seen, although my Beighton score is low (1/9) the system allows for 'generalised joint hypermobility' regardless of score, which is definitely true of me.

But I only have mild skin issues so I don't score enough points in that section to qualify as hEDS.

So I think I'd be generalised hypermobility syndrome (G-HSD.)

How does your hypermobility affect you?

I have generalised bendiness with instability in practically every joint - and yet my beighton score is low because my knees and elbows don't bend backwards. They bend sideways, and rotate in ways they really shouldn't.

I have POTS - quite severely.

I have reflux and mild issues with a slow gut and a bendy bladder.

And plenty of pain and fatigue (which I almost forgot to mention because it's become so normal for me.)

It affects me every day, every minute. Looking at my life objectively, there is very little I do in the same way as an 'average' young woman - I have had to adapt every aspect of my life, using a wheelchair, being conscious about posture, daily physio to enable me to function, pacing, lying down and moving about to manage POTS, avoiding heat - all sorts of things. It even affects what and when I eat and what I wear.

Does it annoy you that POTS and gastro-intestinal issues are not included in the diagnostic criteria?
It's a bit frustrating, but actually there's not yet enough information on how they are linked. Both POTS and gastro-intestinal issues can have lots of different causes so they can't be part of the diagnostic criteria until they are better understood. Thankfully the new information is very clear that doctors should be aware of, and look out for these linked conditions in someone who has an HSD or hEDS - and there's some really useful management guidance on them too. I really hope more research happens soon, but until then I think I'm in a better position for accessing help with POTS and GI issues because there is now clear, concise, up-to-date information I can refer my doctors to - regardless of whether I'm HSD or hEDS.

Do the changes scare you?

Of course. Change is scary, and as it took me 20 years to get my current diagnosis, the thought of possibly 'losing' the respect that saying 'I have EDS' can get from medical professionals is very unsettling.

What would you say to others who are in a similar position?

I've found it helps to focus on the fact that it said that HSD is not necessarily milder than hEDS - both can vary in severity. And the HMSA 'clinicians guide' (which I've heard a little about) is explicitly for both hEDS and HSD - making it clear that us HSDers can experience the same debilitating symptoms and even the same associated conditions - POTS, gastro, MCAD etc. (once it's published we'll put a link to it here.)

This has never been officially, scientifically acknowledged before, and this fills me with hope that more and more doctors will take HSD seriously. Far more seriously than 'hypermobility' ever was.

And don't forget that charities like the HMSA are on our side - helping to ensure that all of us are taken seriously. They not only support patients but educate medical professionals too. Being Patron, volunteer and HMSA HSD Ambassador, I've seen first hand how hard they are working to ensure that people with HSD are not seen as 'just a bit bendy'. I'm actually doing a talk as part of an HMSA Hypermobility Masterclass on living with HSD for medical professionals that the HMSA is helping to run in a few weeks time. I will be fighting the corner for everyone else with an HSD too.

What will you be doing next about your own diagnosis?

Carrying on as normal.

Treatment for both hEDS and HSD is symptom-based in the UK. I don't need to see someone to officially get 're-classified'. Re-classification is something that will happen along the way if I need to access services/support/advice through someone who thinks it would be helpful to re-assess me. And actually I can expect to be reclassified at various times during my life as my symptoms change - because it is a spectrum condition which can change over time.

And until I'm reassessed I will either use HSD or JHS - not assessed under the new system yet.

And on a reassessment note, I like that this new system recognises that it is a spectrum that people can move about on. Being G-HSD doesn't mean 'definitely not hEDS' - it means 'currently not showing specific symptoms of hEDS - symptoms may emerge later so keep an eye out'. If I become less symptomatic it might change to Asymptomatic-HSD - or if I get more skin related issues it might change to hEDS. If I get less flexible with age, but haven't developed symptoms that class me as hEDS I can slide along to H-HSD (historic HSD) - whatever my symptoms are, I can have a diagnosis that accurately reflects how I am affected and flags up the potentially linked conditions to look out for. It's so different from the previous system that it's a lot to get my head around and will take me some time to get used to! (We'll link to a summary of the HSD criteria as soon as we can.)

How would you summarise how you feel about the new classification and associated information?

Well...

...a bit of "oh help, it's changing" is going on in my head....actually, maybe quite a lot!

But underneath that, having read a lot of the new medical articles in the journals, the new criteria and all the linked information that has been published along side them means that although I don't think a positive effect will be instantly visible, but I think the future is looking up.

So I am taking a deep breath, ready to ride out any initial period of uncertainty, but full of hope for the future.



Thursday, 23 February 2017

Customer consultation: Keyring card dividers and folders

For some time I've noticed that many of my customers (including me!) have quite a few stickman cards. Sometimes having lots of cards can mean that finding the right card quickly is tricky.

Over the past 5 months I've been looking into various possible solutions and have come up with the following:

A set of 4 polypropylene dividers that is the same size as a card, with a tab - so they will be durable, waterproof, wipe clean, and wont fray or disintergrate at the corners.

The sample ones I made are clear, but the actual dividers will be opaque, and in 4 different colours so it's easier to see them (blue, green, yellow and red). The dividers can also be written on with marker pen.


 And I have also found some sticky 'tabs' which can convert the cards and dividers so they fit into any standard 2 ring ringbinder, and also pocket filofaxes! (If you later want to remove the sticky tabs, and don't want sticky patches on the back of the cards, nail polish remover works well.)

So I now have my set of 20 cards plus the prototype dividers in my old pocket filofax (150 x 130 x 30mm) and I love them!
Photo of my pink pocket filofax with some cards in it, and to the left are a set of 2 tabs and a 'cuppa needed' card.

Photo showing a tab being looped onto the first ring of the pocket filofax. - one is already looped onto the 5th ring. (Make sure the tab is sticky-side up!)

A photo of the 'cuppa needed' card being placed onto the sticky tabs, and stuck down.

A photo of the finished filofax of cards and dividers.

Another photo of the finished filofax of cards and dividers, with the section of cards being flipped over.
Creating the overall effect of having a totally customisable and durable book explaining my normal, which can be used to answer 'whats wrong with you?' questions in both social and medical contexts, and as a way of clearly explaining needs and symptoms.

(Cards not included. Neither is the the file so you would need to get one from elsewhere - there are some really lovely pocket filofaxes around.)

So, would you be interested in a pack of dividers for around £3.50?

And would you be interested in a 'conversion pack' of 50 sticky tabs (enough for 4 dividers and 20 cards) and the 4 dividers for around £8?

Please let us know by commenting on our FB post, on here, or on twitter.

- We won't stock them if no-one wants them, but if lots of people want them, then we will!

Wednesday, 22 February 2017

Coping with the guilt of hidden disability

I was recently asked how I fight the guilt that comes with disability and medical conditions. The guilt from not doing tasks you feel you 'should' have, for not being able to help out or socialise with friends and family in the same way that others can. For not being able to work as much etc.

I think perhaps over time I have learnt not to fight it.

It's more that I let it fade away. I can't control how I feel - but I can control what I do with the feeling.

I recognise that yes, I feel that way sometimes. But I also don't have to believe it, or act as if it were true. And over time, although guilt still floats through my brain sometimes, it does so less and less. And affects me less and less.

You see, if I can't do something without unacceptable side-effects, then I shouldn't be doing it.

And once I've made that decision, instead of looking at what I can't do, I look at what I can do. I can't help set the tables for a party - but I can fold the napkins. I can't run around with the nephews, but I can play monopoly.

I also measure my achievements by what I found hard but managed anyway. Putting something that is challenging for me, today, on my 'To Do' list each day. Not challenging for someone else, not challenging for me on a good day, but challenging for me. Today.

 Having a schedule also helps because then I feel I have more of a purpose to my day, and it makes pacing easier too. Then instead of feeling guilty about what I can't or haven't done, I can see what I have done and celebrate it.

A win-win situation!

No guilt needed.

Tuesday, 21 February 2017

HMSA's Hypermobility Spectrum Disorders Ambassador

I'm really looking forward to getting going with my new role at the HSMA: Hypermobility Spectrum Disorder Ambassador.

Below is the article from the HMSA on my appointment (reproduced from the HMSA website, with permission.)

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HMSA Youth Patron, Hannah Ensor, is to become the HMSA’s Hypermobility Spectrum Disorder* Ambassador.

Hannah has worked closely with the Hypermobility Syndromes Association for a number of years and assists with raising the profile and awareness of Hypermobility Spectrum Disorder; the new name for hypermobility syndromes which are not covered by EDS, OI, Marfan, Stickler and PXE.

Hannah takes part in the HMSA’s self-management programmes and participates in our work with professional members as the ‘patient voice’. She is also well known for promoting the rights and needs of people with disabilities and is spending a second year as one of Britain’s 100 most influential people with a disability.

Hannah regularly fundraises for the charity and has a hugely successful business which has enjoyed global recognition, called Stickman Communications. You can view Hannah’s work on her website, stickmancommunications.co.uk

“I’m honoured to have been offered this exciting opportunity and am looking forward to helping further raise the profile of hypermobility spectrum disorders* – particularly highlighting the fact that the whole spectrum of conditions can range from mild to severe depending on how each individual is affected.

 Over the past few years, as a Patron of the HMSA, I have seen an increased number of people taking hypermobility syndromes of all types more seriously -and I’m excited by the prospect of being able to help build further on this important work, among the general public as well as in the medical and patient communities.”

*Please see our HMSA statement of position on the 2017 International Criteria for Ehlers-Danlos syndromes which explains how our use of terminology has been, is and will be changing.


Friday, 10 February 2017

"What have you done?"

I dread this question.

"What have you done?!" I risk being asked every time I leave the house, and inevitably it is followed by a outpouring of unwanted - and unwarranted - pity for the fact that I'm disabled.

Today as I was leaving my Mum's house, her neighbour arrived home. I've not actually met him before. I was using one crutch - having been able to park within 2 metres of the front door.

We said hello. And then...

"Uh oh, what have you done?" he says.

Me: (Thinks: Oh no. Another 'oh that's so terrible' pity flood to cope with.)
"Actually, it's better than my usual wheels. This is progress!"

Him: "Oh." Grin. "Enjoy it!"

I expected the 'pitiable' assumption, but what I got was the assumption that I could - and would - go and enjoy my day.

Sometimes it's lovely to be wrong.


Wednesday, 18 January 2017

Living with a variable condition - A shopping analogy.

What's it living varying fatigue and pain levels?

It's like trying to shop with a limited budget, when prices can change (usually up, sometimes down) at any time, without notice. Oh, and the budget can change without notice too.


You often have to abandon items or switch items for cheaper/lesser alternatives. The luxuries might be first to go, but even essentials can become priced out of reach. The only other option is to borrow money at extortionate levels of interest.

At that level of interest, borrowing has to be a one off thing for emergencies and special occasions. You'll go bankrupt if you keep borrowing every time the prices go up or budget goes down part way through your day.

The most important skill becomes being able to change plans without warning. Being able to adapt around whatever is happening and to prioritise so that you can a) afford your shopping and b) you keep the right items.

In the context of living with a variable chronic condition or disability, the shopping list becomes a To Do list or schedule, and the energy 'cost' of any activity will vary, as will the energy 'budget' available, due to a range of factors.

These factors will vary between people. Some of mine include: how well I've paced, hydration, temperature, what I've eaten, whether I've been able to exercise regularly recently, hormone levels, amount of sleep/insomnia, needing to do an unexpected task (anything from clearing up a spilled drink, to a journey taking longer than expected), or the body fighting an infection.

Bearing in mind that the 'right items' will also vary (sometimes personal hygiene might be the most important, other times socializing or doing something that helps mental health, other times physical health or exercise might take priority) this process is pretty exhausting and turns a simple shopping trip into an epic lateral thinking, problem solving challenge. It's not just the very limited energy levels that are the problem. It's the variability that makes life a constant balancing act of decisions, and makes every day a step into the unknown.

The overall effect means starting the day with a plan, in the certain knowledge that the plan will need to change. Perhaps cancelling activities, or tweaking activities to reduce their cost (like eating smaller meals - because digesting takes me a lot of energy, or using dry shampoo and baby wipes instead of a shower, or lying down for a conversation.)

These changes of plan are the only way forward - the alternative is to run off adrenaline and then crash out. This might look fine from the outside because the crash tends to happen behind closed doors, when I've relaxed, so others often don't realise the toll it's taken. Crashing out takes far longer to recover from. The more I push, the bigger the crashes and longer the recovery. Trying to keep pushing through my fatigue hospitalized me for 5 weeks. Totally energy bankruptcy. It's taken years to get back to close to where I was pre-crash. I really don't want to repeat that!

But sometimes things can't be abandoned - perhaps I'm out and can't go straight home, or it's an emergency, or a special occasion. Then I need to do what I can to reduce debt. For me this will include: rehydration salts, lying down whenever I can (park benches, quiet corners of shopping malls, the floor of the train, the back seat of a car) eating little and often, accepting help, periods of zoning out and not talking to anyone, and generally pacing. And then taking a day or more afterwards trying to spend as little energy as possible/spend energy on things that will improve long term energy like nutrition,exercise, and pacing. Then the 'spare' budget at the end of the day can go towards paying off the debt - i.e. getting myself to a point I am less symptomatic and more able to function.

At times I've had to reassess and rearrange my whole lifestyle (career, exercise, social life, diet etc) to get things back within budget. It felt horrible, like a failure, but it turned out to be the best thing I could have done, and something I now see as one of my most precious achievements - why? because by having a more flexible lifestyle I've been able to live mostly within budget, and that has triggered a slow increase in my budget over time. Things I thought I'd given up for ever are now becoming possible again.

I rarely (if ever) get my budgeting spot on, but getting it 'more or less right-ish' most of the time, and taking the time to recharge properly if I've gone totally over budget has made a huge difference to my overall energy levels and ability to do things.

The irony is, that the process of making sensible decisions so that I stay within energy budget also takes energy! Thankfully, in my experience, the energy saved far outweighs the energy it costs - and it's got easier over time, although I don't think it will ever stop being a challenge.

A worthwhile and rewarding challenge, but a challenge nonetheless.

Thursday, 12 January 2017

I can get into my house!

As some of you will know, I will be moving house in a few months, from a ground floor flat to a bungalow - which we are currently in the process of completely renovating.

Up 'til now work has been of the 'destructive' or background variety. Starting with removing carpets smelling of cat wee and wallpaper, on to removing fixtures and the odd wall, progressing through chiseling holes in walls for new cables and pipes. Then building the odd new internal wall and putting in plumbing.

And now we are at the exciting stage when new stuff is going in, holes are being filled and a home is just starting to emerge from the building site. Still got weeks and weeks of work, but I had to post today because...the new doors are in!

I've been a bit too flollopy to leave my flat today, so I can't see them, so my builder sent me photos (because he's awesome)
 

Look carefully.

Can you see it?

Can you see the bit that's exciting?

LOW THRESHOLD!

The prospect of not having to step over a huge lip to get into the house, and of being able to wheel in and out once we've sorted ramps is just marvelous.

I will be able to get into and out of every single door in my home! EVERY SINGLE ONE!

Sorry if I seem over excited - especially as I haven't even seen them for real yet, but the prospect of being able wheel out of any door I choose - front, kitchen or rear patio, is really rather marvelous.

I haven't been able to do that since starting using a wheelchair 10 years ago. Many wheelchair users never have this luxury. I feel like I've won the lottery.

Obviously I've known I'd ordered level access - but actually seeing these photos made me realise that it is actually happening.

I will be able to get into and out of any door of my home, safely and easily.

Bliss.

Words can't say just how cool this is. So I shall leave it to your imagination.




Monday, 9 January 2017

Stickman talks at NAIDEX, Birmingham

It's official! I (and the stickmen) will be running 2 seminars at NAIDEX this year.

Bridging the Gap: Improving communication between professional and patient.

And

Helping people around us to understand our hidden symptoms and disabilities.

(Click the links for more info)

Both are scheduled for Wednesday 29th March but I don't think the timetable has been completely published, so keep an eye out for the times.

The reasons behind my topic choices are simple:

Bridging the Gap:
I've experienced a lot of medical misunderstandings and mis-communications throughout my life, but with hindsight I can see they didn't only frustrate me, and waste my time and energy, but also the professionals trying to help me. So 'Bridging the Gap' is all about addressing this - a step towards a future where health care professionals are better equipped to create effective working relationships with their patients.

Understanding hidden disabilities and symptoms:
This is full of things I wish I'd been told earlier. Things that helped create understanding and acceptance of my quirks, and made it easier for me to live well with my conditions. Through running Stickman Communications I have realised these are also useful to the thousands of others living with hidden disabilities symptoms. It is a topic so close to my heart that it tends to creep out into everything I do, so unsurprisingly it's taking center stage in this talk at Naidex.

NAIDEX has free entry, anyone (professional, patient, family, carer, random person who is interested) can come to either talk - or even both!

I hope to see some of you there.

Wednesday, 4 January 2017

Hypermobility, reluctance to exercise and the bull in the field

[Note: in this I refer to hypermoblity syndromes. This is written from my perspective as someone with Joint hypermobility syndrome or Ehlers Danlos syndrome hypermobility type, but it is applicable to the joint related aspects of many hypermobility syndromes including other types of EDS, marfan, pseudoxanthoma elasticum, and possibly for other long term conditions too.]

Many people with a hypermobility syndrome react with a level skepticism and reserved-ness when a health care professional (HCP) tells us we need to exercise more or that physio will help.

From experience, I'd hazard a guess that this is often seen by HCPs as:
  • playing the patient role.
  • unwilling to put in the effort.
  • resistant to good advice.
So HCP input comes from that angle - which often creates little progress and lots of frustration.

The key to moving forward might simply be better communication and better understanding of the reasons for the less-than-convinced reaction.

It's worth noting that when the topic of physiotherapy comes up in patient support groups, most often someone who says "physio didn't help me, it made me worse" will go on to say "I swear by pilates/swimming/cycling". Exercise is something they have actively chosen to pursue. 'Playing the patient role' 'unwilling' 'resistant' etc just don't fit.

I treat each new professional I meet with extreme caution when it comes to exercise - even though I love exercise and am a dancer! I will try and explain why.

Imagine you are walking along a footpath through a field. Halfway through, you realise there's a bull in the field, and it's heading straight for you. At speed.
You leg it, and make it over the gate - a bit bruised and shaken, but OK.

Another day you reach the same field. You remember the bull. You look carefully. You can't see it. You reckon it should be OK, and you really want to reach your destination. So you follow the footpath again. Half way across the bull appears from its hiding place - this time you aren't so lucky and end up breaking your ankle as you leap the gate.

A few months later, mostly healed, you are on a walk with a friend who doesn't know your history, and who wants to show you an amazing place they've found. On the way you reach the bull field.

You say "I can't go through there, I'll get injured!."
Would you be reassured by insistence that you won't get injured? - No. How can they know that?
Would you be reassured by "It will be fine. Trust me" - No. It wasn't fine last time - you fell for that thought last time.
Would you be reassured by "I know lots of people like you who've been through with no problem"- No. Because your experience is that you have had problems - there was a bull hiding in the corner!
This type of 'reassurance' response just creates friction and frustration all round. A refusal to proceed based on logic and real life experience, butting heads with a dogmatic insistence that you have to. As a patient this makes you feel like you have 2 choices: knowingly risk injury/worsening symptoms lf in the forlorn hope that they might realise you were right and start listening; or stand your ground and have essential help withdrawn - there is no way to win.

But what if they said "What happened?" and then listened to your story?
What if they then said "Erk. That really sucks. I wonder if we can find a way through a neighboring field. Or we could go along near the fence so we have lots of time to hop over if the bull appears, or we could stand on the gatepost can see into the bull's hiding place"?

Putting this into an exercise context, replace the bull in the field with physiotherapy-induced worsening of symptoms, or exercise related injury. A reluctance to leap into whatever exercise is given is a sensible result of past experience. It demonstrates a wish to learn from past experience and not repeat the same mistakes.

HCP comments like "It will be fine." "Trust me, I know what I'm doing" are simply not helpful. How can you avoid a repeat when you don't know what the issue is? - and if your patient is anything like me, they will have had first hand experience of "it will be fine" promises going very pear-shaped.

The key to progress is talking about the past experience. Finding out what previously had a bad effect (and what worked) and coming up with possible solutions - together. And honing those solutions over time, using discussing rather than dicatorship, so that the patient becomes better equipped to make their own self management decisions in the future.

True, all the physiotherapists I've seen over the years have made mistakes at some point (given exercises that didn't help, or given unhelpful advice based on false assumptions) - but the good ones listened to me, learnt, and went on to make a real difference in my life - helped me learn to avoid, outwit and outmaneuver the bull in the field.

Bull avoidance tips:
  • Use a joint support or taping during exercise - so struggling joints can be strengthened without injury/strain.
  • Work to strengthen the struggling joint first. (backing off from knees initially, and working on a stronger core, hips and butt in sitting and lying means I can now safely do more to strengthen my knees and ankles.)
  • Try a different exercise that works the same muscles - perhaps in a different position. Like in lying instead of sitting, or kneeling instead of standing. 
  • Double check the correct muscles are being used. Gentle pressure really helped me activate the right muscles and get around my poor proprioception issues. (I often found myself going through the motions of an exercise from one flop position to another flop position with minimal control - It was only when I realised that I had to control the whole movement that physiotherapy started to help me. 
  • Address 'what if' concerns with plan B, C, D - and however many versions are needed. Even if one plan is 'you stop that exercise and send me an email/leave me a message/tell me at the next appointment.' - HCPs don't need to predict the future, they just need to respect my concerns as valid. I can afford to take more risks if I have 'emergency back-up plans' in place.
  • 'Try this and see how you get on' is a great starting point (combined with alternative plans for if it doesn't work out well).  (In my early days I'd often go all out and force myself to reach physio targets despite the fatigue/pain - then injure myself doing something normal afterwards because I'd overdone it.) Using an exercise form like the one below gives a straightforward, clear way of communicating about any 'bulls' that are encountered, and empowers the patient to make decisions and adapt their exercise regime to work better for them, rather than feeling like they have a choice between forcing themselves into injury or giving up completely.
This form is available as a download and in printed form from http://stickmancommunications.co.uk/for_Medical_Professionals
  • Encourage stopping an exercise when it can't be done perfectly. I tend to push myself too far as I try to prove to the HCP that I'm trying. Exhausted flop might tick the 'reps' box, but it's not going to be of long term benefit - it sent me backwards.
  • Look for ways to convert daily living stuff into exercise - that way we can use limited energy in a more constructive way. For example sitting on a wobble cushion for 5 minutes while on social media. Or squats or heel raises while brushing teeth.
  • Have ideas of exercise/sports that might be accessible to people with, for example, limited mobility or fatigue - such as dance groups that are adaptable and genuinely inclusive (like 'dugout' in Oxford), seated exercise classes, swimming, wheelchair basketball, badminton, rock climbing, pilates with an adaptable and knowledgeable instructor, disability athletics clubs. And whatever else you can think of locally - remember, people don't have to be wheelchair users to benefit from wheelchair-based sports, especially when the non-wheelchair version is not possible for them.
In short, if we seem reluctant to exercise, please take the time to find out about the bull in the field, and then work with us, using our expertise in 'how my body reacts' to create a way forward.

.