Tuesday, 29 December 2015

Keyring cards - tweaking the design?

Most of my keyring cards have something like this on the back:

But a few of my cards (like the one on the left) are mostly blank on the back, with write-on stickers so you can add elements that are personal to you. The white stickers can then be covered over with a clear sticker to keep it clean and neat.


While working on some dyspraxia-inspired new designs (some of which will also be useful to many people with fatigue, autism and/or other hidden conditions - there are some that I really want!) I thought: what if I switched to all cards having a mostly white back (with the logo and copyright info at the bottom) and then have stickers available separately - so you can buy a white sticker plus clear over sticker for, say, £0.30p and they can be used on the back of any card you want to use them on.

Whether it's writing 'See the care plan in my bag for treatment details' on the back of a card explaining your medical conditions, or listing things that can help on the back of the sensory overload card. It would give a much greater flexibility to the user. - However, the change would be very gradual with the plan back only appearing on new designs and re-prints as I gradually work through my current stock.

You could still use the extra stickers on the back of the old design ones - they would just have a border of the current design around the sticker, and a little of the design may show through the white sticker.

What do you think?

Shall I go blank?

Tuesday, 8 December 2015

Disability Top 100 Power list

[edited to add images]
This is the second year that Shaw Trust and Powerful media have compiled a list of the top 100 most powerful people with disabilities - the decisions on who makes the final list by a panel headed by paralympian and presenter Ade Adepitan.

It is surreal to find myself on the list. I draw stickmen. It's not really something you traditionally associate with 'influential' people - but hey, I'm not complaining! And I should probably also point out that most of my products are created because people contact me asking for them - so half the credit for my work goes to my customers. Which must mean that I have influential customers!

Anyway. Being on the list is surreal. Surreal but nice.

I went to the launch event to mark UN International Day of Persons with Disabilities on 3rd December at the Lloyds head office in London

Here are some of my highlights:

  • Discovering that the wheelie accessible London buses really are accessible!
  • Having the staff at Lloyds be so totally unfazed by some of my more unusual access needs, and whats more, coming up with practical solutions quickly, efficiently and with no fuss. As if I'd asked to borrow a pen rather than for somewhere to lie down, and a bag of ice t :D (I got special permission to go lie down in the Executive Board Room - where only the chosen few get to set foot and the top level banking decisions are made!)
  • Meeting Tanni Grey-Thompson for the second time in seven days (also saw her at the OT show). 
    Hannah Ensor with Tanni GT at the Top 100 launch event


     

  • Realising I've already met, or conversed with online, many of the people on the list! (Hannah Cockcroft, Lost Voice Guy (aka Lee Ridley), and had heard of many more (Giles Long, Geoff Spinks, Dominic Littlewood it was great meeting you! Adam Hills - really wish you'd been at the launch :D)
  • Meeting some new people who were really awesome - including Michael McGrath of the Muscle Help foundation, and John Horan a barrister who fights for disability rights.
  • Watching the 'John Townsend Trust Children's Unity choir sign/sing 2 songs.

Hannah with Michael McGrath form the Muscle Help Foudnation.

The best thing about it though was the diversity - the diversity of people, disabilities and careers/roles. Everyone in that room had overcome various barriers - both practical and attitudinal to make it to where they were. It was a room full of innovators. A room full of unconventional. It made me feel at home, and very positive about the future for people with disabilities.

I'm not yet entirely sure what being on the list means in the long term, but I will do my best to be worthy of it!

Actually, perhaps the best thing was that I'd made it onto a Top 100 list with both Tanni G-T and Stephen Fry :D Now that's something I never thought I'd say!

Friday, 27 November 2015

Parking: Access Success.



I love my blue badge.

It means I get to park in spaces that allow me to get in to and out of my car easily, and which are within a relatively safe wheeling distance of my destination.
Image result for disabled parking images

Fabulous.

Until you realise your badge is in Birmingham, you are in Didcot, and you need it to park at Oxford Station the next morning.

ARGH

The rules are clear. No badge = no right to park in the blue badge bays.

But even the nearest standard spaces at Oxford Station were outside of my realistic outdoors wheeling distances.

Taxi wasn't an option.

MORE ARGH!

I called the assisted travel line (where you book train assistance, ramps onto the trains etc). They gave me the number of the company who manage the station carpark - APCOA.

Well, parking companies in general don't get good press. Their reputation is for giving fines wherever  they can. I wasn't holding my breath.

I called them, and explained my situation and asked if there was any way I could get permission to park in a blue badge space without displaying the blue badge. The lady on the phone was very helpful, and said she'd email the manager for that carpark and get back to me.

I wasn't holding my breath, but sure enough, within an hour she'd called back with permission, and a code to display on my dashboard! Obviously they couldn't guarantee that a space would be available, but if there was, I could use it - giving me the same chance of a successful journey that my blue badge would.

It made the whole day doable.

So thank you APCOA. You made my day possible, and you did so without even a hint of annoyance at the effort you had to put in to do so.




Sunday, 8 November 2015

Pacing for the OT show!

From a business perspective, shows like Naidex and the Mobility Roadshow, and the OT show and all the other disabiltiy related exhibitions would be great places for me to promote my stickmen, and raise awareness of my work.

However, there is a big drawback. They are 2 or more days long. Pacing says no.

Single day events like Kidz Down South leave me utterly exhausted, even with 2 people there to help me and do all the selling, so all I need to do is talk. By the time I get home I can scarecly speak and am utterly flolloped. It can take days (sometimes weeks) to get back to my usual level of functioning. My energy is finite, and I don't have enough in the tank to cover 2 days in a row that require coherence at that intensity.

As a small business, where the business is..well...me plus a few people who help with packaging orders, there isn't anyone else who could run my stall on their own.

And you can't book a stand at one of these and then take it all down after one day (besides, it becomes a bit of a waste if you've paid for 2 days and only use 1!)

Pants.

No big exhibitions for my stickmen.

But I really really wanted to go to the OT show. I went a few years ago as a visitor and I loved it. And I'm gradually realising that medical professionals like my work, so I thought I'd see if it could be possible. A long phonecall later, and a bit of creative thinking, and we came up with a way that will make it possible!

Instead of selling, I'll just have sample items for looking at/playing with, keyring card brochures to browse, and lots of leaflets so people can order online later. This means I can travel by train which is lots easier than driving, and the energy required to set up the stand will be much less, and I don't have to do any maths (working out change with brain fog is....interesting!).

As many readers will know, I am also Patron of the Hypermobility Syndromes Association and support them in raising awareness and understanding of hypermobiltiy syndromes for both professionals and patients (stickmen products, doing talks, volunteering). And when I go to 'Stickman' events I usually end up doing a combination of stickmen promoting and HMS educating.

So: I will join up with the HMSA for the OT Show, with information from both organisations available on both days

Wednesday 25th November:
I will be there with HMSA and Stickman Communications information available,

Thursday 26th November:
Hopefully an HMSA representative will be there, with both HMSA and Stickman Communications information available. (if no representative can make it, there will still be leaflets available)



So, if you'd like to see some of my products and/or improve your understanding of Hypermobility Syndromes, please come and visit us at Stand C36 at The OT Show. - ideally on the Wednesday!

Friday, 6 November 2015

Leaning on wheelchairs...why do people get so cross?

Leaning on wheelchairs is a dangerous occupation.

Seriously? - I mean it isn't like leaning on the person is it.


When you lean on my chair....
I cannot turn around
I cannot move - you hold me hostage until you let go
You are in my personal space, making me uncomfortable
 - just as if someone came and deliberately stood on your shoelaces, refusing to move and forcing you into stillness, taking away your freedom and imposing themselves into your personal space while leaving you powerless to step back to a comfortable distance.

Would you like this to be your normal? Do you really think this is okay?

In reality it's more than that.
If I relax back into my chair, you could tip the chair over backwards, injuring me, and I feel every movement you make - like someone kicking the back of your chair on the train. Plus extra pain with every movement.

Yes, there are times when leaning is OK - and those times can be roughly categorised as 'when closeness of relationship and/or specific situation means that if there was no wheelchair, there would still be leaning - a 2 way, mutually accepted lean. Like when spending quality time with the nephews and nieces.



But in any other situation - step away and don't stand on my shoelaces.

Tuesday, 27 October 2015

Walking Practice and knee pads

As most of you will know, I use a wheelchair for pretty much everything outside my home.

This is for a combination of symptoms of EDS and POTS, summarised and simplified as:

1) Wobbly feet, wobbly ankles, wobbly knees, wobbly hips and wobbly spine; all requiring tight-rope-walker degree of muscle control, coordination and precision to maintain upright.

2) Dodgy blood pressure and heart rate in response to standing steadily stealing said muscle control and coordination.

The best way of improving muscles is generally to use them, but my trouble is that doing anything in standing has a very limited timescale, It's the coordination and keeping the right muscles at the right tension throughout a movement that I find so difficult - it's not a strength issue.

I have a theory that if I could find a way to improve one wobbly area involved in walking, then maybe that would make controlling the rest more do-able.

Only I can't practice walking focusing on just one area - because the moment I get any one area wrong, I hit the deck (or wall, or sofa, or table).

My physio gave me an exercise of kneeling on a wobble cushion and mucking about - as in moving arms around so I have to get muscles to compensate actively so I don't fall over. I wanted to build on this.

So the other day I bought....
Image result for rucanor knee pads


dancers kneepads.

Which I will use for dance (of course), but I can also use around the house.

My plan is: to do as much walking with poise as I can manage, then when I coordination drops to 'incompatable with proper walking' I can knee-walk instead - so my hips and trunk get more of a workout  in an upright stance similar to proper walking, but I don't have to concentrate on knee, ankle and foot position.

Hopefully this will improve my trunk stability, which might then, in time, make proper walking a little better. And even if it doesn't, the strength I build will help keep general pain more manageable, and it should also help with my digestion too! (Exercise is known to help transit through the lower intestine.)

Seriously, the knee pads make are incredibly comfortable to kneel on. Weirdly so. I mean nothing has the right to make kneeling this comfortable! But hey, I'm not complaining! They are a bit scritchy-tight, but I'm really hopeful that they might prove to be another tool that helps me get the best out of my body.

They are definitely worth it.

Yesterday I vacuumed the living room floor, courtesy of knee pads.


Normally getting the right muscle tension adaptations for the hoovering movements on top of standard wobbly joints control is virtually impossible: a recipe for disaster. Knee walking with kneepads made it delightfully do-able. And I was much less exhausted than I expected afterwards :)

All Hail the Kneepads!

Wednesday, 21 October 2015

Creating products for people on the Autistic Spectrum

I was at the launch of MIND's guide 'Supporting people living with autistic spectrum disorder and mental health problems' on Friday. It was a really interesting event and I hope their toolkit will help practitioners provide better mental health support to people on the spectrum.

Several of the talks highlighted how important it is to find out the service user's perspective and opinions. i.e. the views of people with autism.

This is true. It's not just important, it is fundamental.

Here's some notes from my experience of creating keyring cards that work for people with autism/on the spectrum:
[Note: I'm not autistic, so I have no right to say which terms are acceptable. So throughout this post I've used is a selection of terms that different autists have told me they identify with.]
Find people with autism to consult. Social media is great for this.

Read things written by people with autism. Blogs, social media, stuff like that. My experience is that people who state their spectrum-osity in their SM profiles are also good people to consult about products - they tend to be confident with their difference and not afraid to tell me when I'm getting it wrong. That way you will hear their perspective directly. Medical professionals and support charities might know lots, but if you want a product to work for an autistic person then professionals and charities should be background research. Perspectives gained directly from people with autism should take precedence.

And once you have a design in progress: keep consulting. All my autism related items have been repeatedly fine-tuned by spectrumites - and as a result they are far better and far more useful than they would otherwise have been.

Have a clear purpose for the product. And make sure that the purpose is one that people with autism think is important. When deciding the purpose it helps to find out the views of a few different people with autism on the issue you hope to address, and keep researching until it is something that makes total sense to you and you can relate to.  'Helping an autistic person' is not good enough. 'Making people understand how important noise cancelling headphones can be for an individual with ASC, so they don't try and make the individual remove them' is fine.

Accept that no product will work for everyone on the spectrum. Everyone is different, both in how their autism affects their lives and in personality. Trying to create a one-size-fits-all will usually mean something so watered down and generalised that it works for no-one. There is no problem creating a product that works for some, provided you don't pretend that it should be used by everyone.

Make sure the design is one you would be proud to use/show. Autism doesn't stop people having good taste. If it's aimed at adults, make sure it is suitable for adults. I do this by using the same principles and basic design that I do for cards I use to explain my conditions.

Don't lose the humour. Avoid the trap of thinking that spectrumites don't get humour. They do. (although of course the exact sense of humour varies between people). If you struggle with this, then spend more time with some autists in situations where they are comfortable and relaxed (preferably both in person and on line).

Only address one issue per card, and keep it clear and simple. The fewer words the better, and a good image means less words are needed. This makes them easy to read, easy to relate to, and gives the user power to say 'here and now, this is the piece of info you need'. Lists and paragraphs are fine, but if the relevant info needed in that moment is half way through paragraph 4, or at bullet point number 8 there is a real chance that the reader will miss it.

A specialist would say this makes it easier for the person with autism - but actually it makes it clearer for EVERYONE to understand.

How appropriate, clear, simple and engaging a communication aid is for the user AND the reader is what determines its effectiveness.

Anything aiming to communicate about autism needs to be presented in a way that gets neuro-typicals to drop their unhelpful attitudes and inflexible approaches to autism, and to embrace it as simply a different normal.


Thursday, 24 September 2015

Dance, DM boots and the price of fame.

Well, Tuesday was really fun - and utterly exhausting. A crew were here on behalf of the English Federation for Disability Sport, filming about ordinary disabled people being active - not elite sports, but just everyday normals like me finding ways to be active that work for us.

The film crew arrived in the afternoon to film a bit of background and do some interviewing. I paced as well as I could - interview questions were mostly answered while horizontal, and they all got banished for an hour between interview and dance class while I had a sleep. And then off to the first dance session of the new term - oh how I'd missed it!

It's really hard to put into words how much I love being in an environment where I am treated as an equal, my limits are respected and accepted as 'Hannah normal' and I get to move in ways that work for me and feel beautiful - it's really hard work, but is SO fun, and also has proved really useful for helping me manage my EDS and POTS - provided I am really careful.

The poor film crew now have 110 minutes of footage to turn into a 2 minute clip.

I was highly amused at the fact that the shots they got most excited about were:
a) Me flopped on the sofa, filmed from outside the patio door with my 'happy wheels' sticker in the foreground.
b) My Doc Marten boots all lined up in the hallway,
c) My pacing fridge magnets on their board
d) The room thermometer next to my lightweight dumbells and the TV remote - kinda said a lot about condition management
e) My Doc Marten boots all lined up in the hallway, Again.
f) Me putting my Doc Martens on.





If the boots don't make the final cut, I shall be rather surprised - although I can't remember whether they got my explanation as to why I wear them on camera. (DMs look better than ankle supports, and still stabilise my ankles enough to help).

By the end of Tuesday I was flopped. Total zombie.
I knew I'd be tired so I'd made sure I didn't have anything urgent to do on Wednesday, but I'd forgotten just how exhausting concentrating and talking can be!

So yesterday I took the day off from everything non-essential. I watched more TV than I'd like to admit [the entire long version of sense and sensibility, mostly with my eyes shut, plus several 'easy-brain' TV programs] while getting up every few ad-breaks to move around, stretch, and rehydrate - before returning to the sofa whenever 'zombie' started creeping up on me again.

For me, that's my best way to recharge after something that has used a huge ammount of energy. It's actually far harder than it sounds because part of me feels guilty about doing so much nothing. But it's not nothing. It's building a better future. It's recharging. It's essential. (And I reckon that by mid October my 'recharging' hoodie design will be up for advance order - ready for delivery in December. It's nearly designed, and I love it so far!)

And it worked. Today I still need ot be strict with short times upright, but I can actually function, and even manage a short conversation!

Tuesday, 8 September 2015

World Physiotheray Day: Fulfilling potential

Today is World Physiotherapy Day, with a theme of 'fulfilling potential'.

As someone with a connective tissue disorder, physiotherapy is essential for building muscle strength and stamina to stabilise and protect my floppy joints - and so is a physiotherapist who listens and takes the time to work with me to find solutions - who respects my limits but isn't afraid to support me in giving them a calculated push on occasion. I love finding that things previously impossible are now beautifully do-able. Even if it is done differently.

(poster available from http://stickmancommunications.co.uk/Tree-of-Achievement-poster)

I co-hosted @physiotalk's twitter chat last night. It was absolutely fabulous to see so many professionals so keen to learn and improve their skills and services. (see here)

One thing that struck me was the enthusiasm for engaging patients in setting goals and the patient being a partner in the whole process. This is awesome. It reflects my current relationship with my physiotherapist.

I am clear about my goals, and my potential
- to run a successful business
- to do contemporary dance regularly
- to manage my energy so I get the most out of life
- to socialise.
- to be as healthy as I can be.

In order to fulfill this potential I use a manual wheelchair, a powered off-road wheelchair, a PA helps with personal care, household tasks and food prep, I exercise, and I pace my activities for best use of my energy. Both my therapist and I know how useful these things have been, and how they have enabled me to improve my health, get stronger, and manage my pain and fatigue. We have been through many discussions, weighing up options and my body's response to them. I need her input, and she needs mine. I don't see her often - I get referred back when things change and I need more guidance - but when I do it is like meeting a colleague, which I really like.

But I am a seasoned physio-ee, I'm familiar with the system, I understand the language. I will confidently, calmly and assertively state my case based on an in depth understanding of my body and conditions, as well as years of progress in condition management.

But it wasn't always like this. I remember a physio appointment shortly after being diagnosed with a life-long condition. After a lifetime of various health issues while being told there was nothing wrong with me, and a year of dragging myself round on crutches - in agony, exhausted, and unable to function, I bought myself a wheelchair.

And the therapist, keen to encourage and help me set goals said (I paraphrase)
Physio: "What would you like to achieve?"
Me: [thinking....I don't know what is possible. I'm only starting to understand why I have the symptoms I do...is it possible to get back to how I was? Or is that setting myself up for disappointment? If I say 'not to need a wheelchair' will I be told I'm a failure and not trying hard enough if I don't manage it? If I say 'to be in less pain' will they think I'm being silly and tell me I just need to learn to deal with it, like my previous rheumatologist did?]
"I don't know."
Physio: "How about to stop using a wheelchair?"
Me: [thinking....I could stop using a wheelchair tomorrow, but I'd have to stop work. I love my job. The thought of leaving it makes me want to cry. I'd be housebound. I'd have to move back in with Mum. When would I be expected to do this by? What if I can't? Will that mean I be dismissed and told I'm not trying? I do try..I do my best...but I just cannot, here and now, see me stopping using a wheelchair. My wheelchair has made so much possible, and the thought of giving it all up is almost unbearable. Perhaps it might be possible, but I really don't know. I can't aim for something that currently only looks possible by giving up work, social life and independence. That's depressing. But if I say no, she'll think I'm using it as a comfort blanket and tell me off.]
"Um...could we say to need a wheelchair less?"

Looking back I wish she'd suggested
"To improve your walking"
"To improve your posture"
"To improve your ability to go places, do things, and live life. - though better use of aids, better pacing, building stamina, learning to use your joints better."

Even if she'd tagged on the end "and possibly even stop needing a wheelchair, but we shall see - lets start from where we are, and see how things go." - I could have coped with the concept of it being 'a potential future goal when we understand your body better'. But not a stated goal for that point in time.

So to all the fabulous physiotherapists geared up to listen to your patients, please remember that most new patients won't ever have done this goal setting before - and if we are newly diagnosed with a long term condition, we are might be totally clueless as to what is possible (expecting a combination of far too much, and far too little) and rather overwhelmed by it all! So be prepared to suggest small and start from there to build our fabulous future, filled with things that were once impossible.



[Note: This is from my perspective as someone with a complex, long term condition. I have no idea how an average person with a one-off injury would approach goal setting!]


Tuesday, 25 August 2015

Bristol Zoo and the Right Wheels.

Once inside the zoo it's all pretty accessible, with all the paths being wide and tarmacked (although the toilets I went to were pretty tight if you are in a power chair - I left my wheels outside the door) I didn't need the full off-roading capacity of my X8 powerchair - but as my wrists were really playing up, using my manual wasn't a possibility, so off-roader it was.

The carpark is very uneven with slopes and chunky gravel even if you are lucky enough to be able to park near the entrance rather than in the field up the hill a few streets away. That would have been a nightmare in my manual! (a total non-issue in my X8)

Anyway, the trip was fabulous. Obviously it's nice to see the animals, but hanging out with my sisters, nephews and nieces was definitely the highlight.

It's funny the little things that made my day:

Helping smallest nephews and nieces to climb things (- using my chair as a ladder.)

Holding my nieces hand and swinging our arms as we went along  - something you just can't do when you walk with your hands.

The view from my chair was apparently the best, so any time we stopped the youngest climbed up and others leant on my chair. I was totally included. My chair wasn't a kind of barrier between me and the rest of the world like it sometimes can feel like - making me be further away. Instead it bought people closer.


At the end of our visit we hung out in the kids play area. I wasn't exhausted - which is pretty incredible (the joys of being able to recline and have a quick nap when needed!). So I spent the time playing with my youngest niece as she conquered every slide she could find. Wheeling easily over the woodchippings and raising my seat up so I could help her cross the rope bridge that led to her favourite slide.

It was a fabulous day that was only possible because I had the right wheels.

And one for which this sticker was totally appropriate:
http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Categories/All/Stickers

(And no, neither of my chairs were supplied by the NHS because the only ones the NHS could supply me with weren't suitable. The NHS paid for less than 1/3 of my manual chair, everything else I have had to fund myself. So please support the campaign to ensure that the NHS provides the right wheelchair at the right time: www.rightwheelchair.org.uk )



Friday, 7 August 2015

Drinking without spilling.

I confess. This is not my strong point.

Managing to pour drink down my chin, onto my top and/or on my boots is more of a strong point.

As is knocking the glass off the table. More times than I like to admit.

I've looked at and tried various sippy cups and the like, but not found any that really worked for me.

And then add in the 'I need to drink something, but I really really don't want to have to sit up' factor.

But then I found these.

'Safe Sip' 

Embedded image permalink
And they really work! (Mine have already saved my laptop and my bed from impromptu showers.)

They are pretty easy to fit, can go on whatever glass/cup/mug I want to use, are easy to clean, and because the straw is held nicely in place, you don't have to do the weird face contortions as you chase the straw around a non-safe-sip-ed cup with your mouth.

And they are cheap. And stylish. And generically awesome.

I now have 3.

The only thing I would say is: don't keep them in the same place as your adaptive cutlery. It turns out they are not immune to sharp knives.

And no. I'm not being paid for this, and have no affiliation with the company :D

Edited to add: However, if you hold your cup upside down, a small ammount will dribble throught he vent in the lid. Thanks to my sister for discovering this. Fortunatley I don't usually hold my glass upside down for prolonged periods.

Thursday, 6 August 2015

Pacing, Frozen, and dealing with emergencies.

Yesterday was busy. Getting a more complex image/poster right, and writing a blog takes a lot out of my hands, energy and brain power.

So in the evening I was all set to watch Frozen. Just because.

With tea and cake.

So I'd be all recovered by today.

Until I discovered that the freezer had gone into overdrive and now contained thick ice walls, 2 inches of frost, and possibly a polar bear (there was too much ice to tell) - to the point it was slowly invading the kitchen.

Uh oh.

I had to sort it. Even though the decision making chart would have said no.

This falls into the category of 'emergency pacing.'

When on the one hand: IT MUST BE DONE.

And on the other hand: I'm so gonna pay for this.

So I did it. I successfully emptied and defrosted the freezer.
But as 'emergency pacing' it includes adaptations to minimise and manage the hangover it will inevitably cause:
Empty the ice/melt water bucket regularly so it didn't get too heavy.
When removing loose ice, I wore my winter wheelchair gloves to stop my hands freezing (seriously, they were waterproof and AMAZING) and provide a bit of support.
Did lots of very short sessions at the freezer, popping back to remove melt water, and brush off any loose chunks using the fabulous gloves.
Had a heater lined up to point at the freezer if it was taking too long.
No pulling/hacking/otherwise using force to remove ice.

And changed my plans for today. Last night I could tell my hands were going to be distinctly grumpy, and likely with high fatigue levels. So I re-did my pacing fridge magnets allowing for rest, stretching, short patches of work, and gentle physio.

Sure enough.
Today is tough.
But that's OK.


Because later, I'm watching Frozen (the DVD, not the freezer), accompanied by tea and cake.



Wednesday, 5 August 2015

The can't-can-can't-can of variable conditions

I saw the recent news article about a girl who gets called a 'fraud' because sometimes she uses a wheelchair and sometimes she doesn't - see here for the BBC News article.

I've experienced this first hand too. It's really frustrating and upsetting. (And I happen to have the same condition.)

But to make it worse...I can understand why people think that...and I'm not sure I wouldn't think that too if I didn't have personal experience of variable, invisible conditions.

So I decided to make a simplified version of my decision process in case it helps people understand why I can do something one time and not another.



This doesn't take into account my balance issues, which mean that things moving in my line of sight are likely to make me lose my balance.

Nor the consideration of whether to use crutches, wheelchair, knee braces, or try using just my legs - which is affected by which joints are playing up in which ways, coordination levels, fatigue levels, what I need to do tomorrow and more.

Nor that walking and keeping all my joints in line is like tightrope walking - and equally fragile.

Nor the 'lycra factor' - am I able to wear my lycra compression stuff (helps with my poor proprioception and reduces blood pooling and POTS symptoms) - and am I likely to manage to take it off again at night without injury.

Nor the fact that the situation may change half way.

Nor whether help is available if it goes pear shaped.

Nor a load of other things.

So yes, you might occasionally see me walk 5 metres looking absolutely marvellous, or get out of the car and walk to the boot and  but you won't see the concentration and effort, or the after effects.

Similar decision making processes apply to all sorts of everyday activities.

And I suspect that people with a range of conditions causing chronic pain and fatigue go through variations of this decision process.

So if you see someone 'looking fine' one minute and 'looking disabled' the next, remember it doesn't mean they are 'faking it', it might mean that they have a complex condition that they are doing their best to manage.

[1/5/2016 Edited to add: Due to popular request, a more generic version of this image (see below) is now available as a poster from Stickman Communications ]



Monday, 3 August 2015

Picnic, proms and problem solving!

I spent Saturday evening at the Battle Proms in the Park in Highclere Castle grounds.

The setting, the music, the food and the company made for a delightful evening. I'd highly reccommend it.

But here are a few things I learnt:

There is a LOT of rough grass to travel over. So unless you have 'Popeye arms' bring a power chair or an 'outboard motor' (aka someone to push you)
The loos are across a field - so manual chair users, be prepared! (Or accost a friendly passing powerchair for a lift)

[Stickman cartoon of manual wheelchair user being towed by a power chair, both people smiling]

A good set of ear plugs are amazing if you are sensitive to noise. The fireworks, music and canonfire all reduced to a very pleasant level.
If you have a powered wheelchair, arrive early and make sure you get a picnic spot right next to a pathway so you don't get blocked by the swarms of neighbouring picnic-ers.
If you are in a manual chair, it's best to be near the pathway, but if you forget this important piece of logistical planning, a strong couple of friends may do the trick.

[Stickman cartoon showing lots of people picnicing, with one person giving another a piggyback through the crowd, and another carrying a wheelchair above his head. Text on image reads: "Successful crowd naviation"]
(Very pleased my not-so-little brother was there! And that I'd chosen to go in my manual - otherwise I'd have been well and truly stuck!)

And at the end, expect to spend a long time waiting before any car within sight actually moves further than 'just outside their parking space'. 3000 cars trying to exit down a single track at the same time causes a jam lasting an hour or more.

But that didn't matter. I'd booked Sunday off as a 'recovery day' (all food prepared, TV remote and sofa ready, To Do list: Rest.). We sat enjoying the memories of the day in the cool evening air to the sound of distant bagpipes playing 'Jingle Bells'.