Friday, 23 December 2016

Disability, innovation, and mattress moving.

My older sister currently lives abroad, and she's staying with me for Christmas - we're having a lovely time so far, but this blog is about preparing for her arrival.

You see, the 'space' where her bed (mattress) needed to go was actually a stack of boxes full of stickman products. Too heavy for me to move. And with no-where else in my flat to put them.

But it's OK. I had a solution: My 13 year old niece, K, (my brothers daughter) loves helping me out with stuff, and my older sister has a storage container not far away to which I have the keys. K can carry the boxes to my car, we'll drive to the storage place, then K can unload the car into the storage container.

Oh, and while we are there, we'll collect the mattress from storage for my sister to sleep on.

Sorted.

All went fabulously.

Until we realised there was no possible way for K to lift a heavy, sprung mattress from the container, over a few metres of muddy gravel, and into the boot of my car. Which was already as close as it was possible to get.

I was barely staying upright when fully braced (including knee pads) and leaning against the car. No way could I help carry it using any lifting technique I'd previously encountered.


Never fear! We invented the 'tortoise' transport method!


It worked rather well.

And actually, carried like this it wasn't nearly so heavy. And was bizarrely comfortable.

True I had a few interesting aches afterwards, but come on, admit it, the tortoise transportation method is awesome!

😆😆😆😆😆

Friday, 16 December 2016

Christmas teamwork with a stranger

It was a beautiful moment.

I was browsing the pyjama* section looking for a gift. Next to me was an older gentleman - doing the same.

We smiled at each other.

"I'm so indecisive!" says the gent. "I hate Christmas shopping, I never know what to get! I don't even know what size she is!"

"Well...I'm a size 10-12, if that helps? And with PJs*, I prefer them a bit big rather than a bit small."

"Hmm. I'll probably go for this size [y] - she's a slightly different size to you."

We continue our browsing along the PJ* section.

"I just don't know" says the gent to me, looking slightly helplessly at an item.

"Well, if I can help, let me know."

We continue our searches. I spot one I like, out of reach on the top line of hooks. "Could you see if there's any size [z]  in that one for me?"

"Of course....why are they always out of the size wanted?!..hang on! Here's a size [z] - and a size [y]"

"Me, That's perfect, thank you!" I take a closer look at it.

"What do you think...this ones a bit more fussy.....I think I prefer that one."

"Well, does she wear short sleeves or long sleeves?"

"Short"

"Definitely that one then. And the best bit is, if she doesn't like it, you can blame the random woman in the shop!"
[Image description: stickman carton of a woman in a wheelchair holding a pair of purple pyjamas, laughing with a standing stickman with grey hair and a beard, holding 2 different pairs of pyjamas, With a note saying "items have been changed to protect the recipients surprise".]
We laughed, thanked each other, wished each other a happy Christmas, and went our separate ways.

*items have been changed to protect the surprise of the recipient.


Thursday, 15 December 2016

What is a 'Good Day' with a chronic health condition?

Good days are strange creatures.

Yesterday was a bad day.

After a long period of 'annoyed' POTS, and a sleepless night my POTS symptoms were severe. By severe I mean every time I spoke my heart rate went loopy. I couldn't concentrate or function. Coordination was pretty non-existent. Conversations sat up weren't happening. Standing with any sensible level of stability wasn't an an option.

I had an essential appointment - which I got through by lying on the waiting room floor, and then lying down during the appointment, and the rest of the day was for recharging - because nothing else was a realistic option.

Today is a good day.

It is a good day because my POTS symptoms have reduced to my normal. I've been able to do 2 short stints of work and a few other bits and bobs. I actually felt properly alive this morning. Clear headed. And after a day like yesterday, a period of mental clarity is the most beautiful thing imaginable. Of course, normal living stuff will create symptoms, and my energy reserves are very low, but trust me when I say that in comparison, today is just fabulous. If I pace it right and I move often enough and lie down often enough there's a good chance I can periodically get back the clarity of thought throughout the day. I even had a shower, and recovered from it within an hour!

It is marvelous to feel SO much better than yesterday.

True, my left arm is grumpy. Got a bit of nerve trouble from my bendy elbow annoying the nerve, and something going on at the shoulder. The result is that my left arm is moderately useless and nerve-achey. My pelvis is also grumpy. And I still have all my normal symptoms, But it's still a good day. Because I can work round these and manage to achieve various little things that don't aggravate those areas too much, and without my symptoms putting a total roadblock in the way.

If I tried to go Christmas shopping today, I think it would be a bad day. My symptoms would create direct barriers to what was trying to do.

Thinking about this, perhaps, for me, a 'Good day' is where I can match my abilities/symptom level to a constructive 'To Do' list that results in me achieving things without unacceptable escalation of symptoms.

I like this thought. Because it means that if I plan carefully, it gives me the potential to have a good day, even when I might be really quite symptomatic in some areas.

Here's to managing to complete today's 'good day' by keeping my activities within my limits! Which means that I am now off for a lie down.

Monday, 5 December 2016

Highlights from the OT Show

As usual the Occupation Therapy show was a great event. We've made lots of great new contacts, and also got to meet a few old friends (Jo Southall and Jen Patchett who popped in to say hi, and Kim Clayden who came and helped out on our stand) and met with old-new friends who I've known onlinen but not met (like from Burning Nights CRPS).

Rather than boring you with details, here are some random bullet point highlights:

  • Many of the OT's who visited us had a special interest in mental health. The conversations started almost universally with them giving an apologetic "Well, I work in adult mental health, so this probably isn't..." so I got to watch their faces light up when they realise that yes, we really do have lots on offer that can help and support adults with conditions that affect their mental health!
  • My hotel room was cold. Some of you will know I'm heat intolerant - so I collapse/get drunk when I'm too warm. The average hotel room is too warm. So discovering that not only could I open the window, but also turn off the radiator completely, was just heavenly!
  • Our location was near the exit to a lecture hall, so we would get periodic crowds of people - at times we'd have so many people at the stand that the ones at the back were being handed leaflets through the crowd!
  • This time I decided to have a smaller table so a short padded bench could fit alongside it - just long enough for me to lie down on - so I could get lots of short 'horizontals' throughout the day - essential for my POTS management. It turned out to have the added bonus that by the end of the day I got extra visitors because I had a seat.
  • Our stand was next to the EHOB stand. They specialise in products that relieve pressure sores. I'm fortunate that I don't have a problem with pressure sores, but I was most interested in their foot/ankle products. I have floppy feet and ankles - and consequetnly a lot of night-time pain as the pressure from the mattress can cause pain, as can allowing the foot to flop unsupported. But I also need to be able to wriggle my feet and legs - making standard rigid resting splints unlikely to help. These very lightweight inflatable, flexible boots might be the solution I'm after! So I will be trying a pair out for the next few weeks and will blog about how I get on with them.
  • I was interviewed on Thursday by Jack March for the Physio Natters podcast about physiotherapy and hypermobility (which might be aired in December, or possibly January - I'll let you know). I didn't do a great job of explaining (but bearing in mind it was day 2 of the show, I was actually doing really well to be able to put sentences together!) so I'll probably try and publish a blog that goes into some of the issues we covered in a bit more detail.

But this was my favourite moment:

The show entrance is a very wide ramp. long enough to get a good speed up. At the bottom of the ramp you had to stop to get your badge scanned every time you entered. Having to stop at the bottom takes the fun out of ramps. The toilets were outside the show and so was food - so I lost count of how many times I went out and then back in to the show, and had to curb my ramp appreciation to get scanned. Until the last time. It was quieter. The scanner chap caught my eye as I reached the top of the ramp. Instead of preparing to stop, I lined myself up...

...and let out a whoop as he successfully scanned me in while I sped past him, roller-coaster style.

Friday, 18 November 2016

Why do I find unexpected change difficult?

Dealing with unexpected changes is a challenge most people would associate with autistic spectrum disorders (I love the illustration about it in this article: http://www.huffingtonpost.com/carrie-contey-phd/the-tendril-theory_b_7984160.html ) or perhaps with anxiety. But did you know that many people with conditions which cause fatigue can also struggle with new or unexpected situations?

For me it is because fatigue and brain fog can mean I can't figure out what I need to do, how I can make it work for me, and if I get it wrong, then a) I might not actually manage to do it, and b) my symptoms can escalate horribly.

My ability to cope with unexpected changes varies hugely with fatigue levels and brain fog. Some days even a 'would you like to pop round for dinner' is something I can't get my head around - other times it's an instant yes, because my fatigue is lower so my coping ability is much higher

These are some of the issues an unexpected change of plan can raise:

- I haven't planned my day to save energy for the new thing. I don't know whether I will be able to get through it without majorly upsetting my symptoms, nor have I planned the necessary recovery time afterwards. And I don't know if my schedule will allow for taking tomorrow off.

- Is it within a safe driving distance for me or do I need to arrange a lift? If I need a lift, who is driving and which of those cars has a boot my wheels can fit in? And what happens if I can't cope and need to leave early?

- I don't know if the venue will be accessible. Will the lovely evening stroll have styles or narrow gates? Will the restaurant have step free access and a loo? Will I be able to lie down if I need to?

- I don't know if I have the right kit with me (for example I have different levels of compression wear, and need the full on custom made entire outfit for being upright for long periods with minimal symptoms. So I might need to change my outfit...but do I have the energy and joint stability to change compression wear? - Do I even have the chance to go home and change it?  Do I have enough cooling vest inserts ready? And do I have the right wheelchair/mobility aids with me?)

- I don't know who else is going. I have a handful of friends and family who have become experts: seen me when I'm really bad and don't flap. They know what to do (for example, how to help me realign a wrist, or when to suggest I lie down). And a slightly larger group who mostly get it, but might get a bit freaked out at some things. If a group doesn't have any experts I will need to come up with back-up plans. (Keyring cards help for this, but don't entirely solve the problem) - this particular issue needs quite a lot of brain power and time before an event to sort out.

I have learnt to take several breaths before reacting. It's not the end of the world even if in that split second it feels like it.

The vast majority of these questions have sensible answers which will make things do-able, but it takes time and brainpower for me to work out the answers. If an outing or event is suggested at short notice. ready to happen in an hour, then I may well not be able to go. Not because the trip is a physical impossibility, but because I don't have the time to sort out the things that would make it possible.

So if you are with me when a spontaneous happening is suggested, and I go quiet or am very unenthusiastic, it doesn't mean I don't want to go, it usually means that I do want to go, but need to time to process things first.

So please be patient, and help me find the answers if needed, and give me as much advance warning as possible so I can make sure I am prepared and can make the most of the event.

Tuesday, 15 November 2016

Finding an accessible home

My recent output of new products has been a bit less than usual.

There is a reason for this: I am moving home! I now have my new home, but it won't be ready for me to move in for another few months as it needs a lot of work done to it.

So over the next few months you can expect a few blogs about the process.

Here are a few notes from my recent experience of house hunting:

1. Wheelchair accessible homes at sensible prices don't exist in my area.

2. Logic says most bungalows will work. Um...no. Half the bungalow's where I live either have corridors with tight corners that even my skinny wheelchair can't get through, or...get this...they have INTERNAL STEPS!
Seriously, why go to the trouble of creating a bungalow, only to put a step into the kitchen? Or a step into the bathroom? Just....why? (Ok, I admit, I'm highly biased in favour of level access.)
And that's without factoring in that most of the smaller bungalows have been converted and expanded into the roof - creating 'unusable space'.

3. Before arranging a viewing, ask the internal step question, and check the floorplans to see if you've already viewed one with that layout and found it inaccessible.

4. I started off convinced I wanted a minimum hassle house. Somewhere that was all nice so all I needed to do was move in. All the nicely presented place still needed work! Replacing front doors with low threshold doors, putting in ramps, replacing carpets with laminate/vinyl, widening doorways and replacing the bathroom. So after about 6 months I changed my priorities and decided that buying somewhere that needed a lot of work was more affordable - and more likely to be find-able - because then I wouldn't be paying for things I'd have to replace to make it accessible.

5. When viewing, try out the mobility options you will use in real life: crutches, wheelchairs etc. It's no good getting somewhere which you can walk through, but not with crutches, or not with a wheelchair - when those aids will be needed some days. The local estate agents got very good at lifting my wheelchair over doorsteps - I would get myself through the door, and they'd bring my chair. This way I could make sure my wheels would be able to access all the important areas.

So after over a year of looking, I found somewhere that was both within my budget and could be made accessible. It's a 60's bungalow which doesn't appear to have any works done on it since the 80's - the amount of work that will need to be done over the next few months is phenomenal, but the end result will be worth it. It's going to be tough balancing all the house related work and decisions with condition management and stickman business, but thanks to a builder friend who is taking on the bulk of the work and coordinating with all the contractors I think it will work out.

But perhaps the most significant thing I've learnt so far is just how difficult it is to find a home that could be made suitable fairly easily. My heart really does go out to those with disabilities who have to hunt for rented accommodation which is suitable without adaptation - because rented places will only be adapted if the landlord decides to. 'Uphill task' is, I suspect, a considerable understatement.

Monday, 7 November 2016

The need to recharge.

I've had a rough few days. Fatigue and pain levels have been much higher than usual, and doing anything involving concentration is hideously difficult. I've had to cut right back on how much I've been doing. I'm not quite sure why. Perhaps I'm fighting off a cold or infection, or maybe I've been overdoing it for a while without noticing - or perhaps it's something I haven't thought of yet.

Either way, it makes me feel guilty.

Like I should be doing more, and I'm just being lazy for not.

But no.

If I can't function, then it's OK to rest. It's OK to reduce my activity levels to a level I can cope with, and just do little tasks (or little sections of a task) and then return to resting before symptoms overwhelm me.

So today I am reminding myself: It is OK to need to recharge. It is necessary. And by gently pacing myself and recharging I will return to my normal much sooner than if I try to push through it and exhaust myself even further.

Today I choose to invest in my future.

I choose to recharge.


Sunday, 30 October 2016

Good posture: Is it important?

I've been thinking a lot about this recently.

My regular readers will know that I consider good posture an essential part of my condition management. 

However, recently I've seen blogs, tweets and articles from physiotherapists about how posture isn't important. The first tweets I saw on this topic were sweeping statements that the idea of 'good posture' was nonsense. This view was one I couldn't understand. But there must be a reason that professionals hold this view so I read up a bit on it.

I read various links and blogs - many more balanced than the initial tweets I'd seen, but still talking about how posture was not such a key issue - saying we shouldn't be focusing on a specific position, and perhaps the important thing was movement. (like this blog that someone tweeted - I'd recommend having a read - but bearing in mind the points I raise below.).

Some of them, like this one, made partial sense.... But the trouble is that I can cause all sorts of symptoms by sitting or standing or lying in poor posture - from numb limbs to pain....are they saying that I shouldn't be avoiding these positions?

I was starting to suspect that there might be a difference of meanings between my 'good posture' and the 'good posture' of the physiotherapists I follow on twitter.

Then I saw a tweet mocking the picture below - ridiculing the concept that leaning on one leg could cause problems:
Photo of a young woman standing with her weight much more on one hip than the other, with text saying how important it is not to stand like this.
And I think I finally might be starting to understand the issue.

What I consider 'poor posture':

I looked at this image and thought.....that's hardly leaning at all! I can stand like that without causing joint problems. Is that what the physio world means when they talk about poor posture not being an issue?

I took a photo of myself standing in this OK position (left hand image). And a photo of me in what I call 'poor posture' - what 'leaning on one leg' means to me (right hand image):

I've not previously seen myself in the posture shown in the right hand picture. Now I see it, it's obviously quite extreme, but my pre-diagnosis self wasn't aware that my 'lean' was any different to that of my colleagues and friends (which looked more like the first image) - and I've only just realised how different it is. It's simply my relaxed version of leaning on one leg. This is the position I will sink into if I start by being in my 'good posture' leaning stand, but then get distracted - like by a message on my phone.

It hurts. Not to start with, but the pain grows in the background, and then when I try to move out of this position, the pain hits me. I have to take my weight off my leg and kinda wiggle it before moving otherwise it feels very unstable and the pain can hit excruciating/tearing (I've never tried pushing through to see if anything actually tears). It can also give me various nerve-type pains and pins and needles. Even if I only hold this position for 30 seconds I'm left with what feels like a minor joint strain. 10 hours after taking this photo, my hip is still whinging at me. The longer I hold the position, the worse the after-effects.

This 'flop' is right at the end of my range of movement, relying on ligaments and involves very little muscle use.

This, to me, is poor posture.

What I consider 'good posture':

I dance in good posture. Always. (Except when a joint slips and I have to wiggle it back, but that doesn't count). But I don't always dance in the same position. I dance in 'alive' positions - moments of active and moments of passive, but always ready to move. Total flop never happens in dance because there is always that conscious awareness of movement or being ready to move. I simply can't afford to let joints flop beyond the range I can control - and into poor posture. Good posture is within my range of movement, where I can control it. If I am in good posture I can go from resting to moving without joint problems. If I've flopped, I can't. And over time, my 'good posture' range has grown as my strength and control have improved.

My 'good posture' can be quite extreme too - but it's controlled extreme, and not held for longer than I can control. It might leave me with the ache of well-used muscles, but it has never left me with the 'ligament strain' feeling.
'Good posture' hasn't always included this range of movement - to start with it was a much smaller range. In the early post-diagnosis years I wouldn't have been able to do the 'good posture lean on one leg' in the earlier photo - I would have gone straight to flop level 'poor posture'. By working to stay within the range I could control, and avoiding flopping out of it, I have expanded my 'good posture' range.

Recently I had to leave a dance class after about 10 minutes. I would explain it as "I couldn't maintain good posture". What I mean is: I couldn't keep joints under control. I'd be in a position that is normally OK, then my joints would slip. Not drastically 'out', but enough to require a wiggle before moving or using another limb to move the joint back into a controllable range. It was like there wasn't a middle ground. Either I was actively controlling my limbs - or joints would slip, causing pain, pinging nerves and pulling ligaments.

So I went home. And spent the evening making sure I maintained 'good posture'. My muscles, for whatever reason (probably the extreme fatigue I was experiencing that day plus the extra flexibility that my hormones cause) struggled to control joints, so I had to flop. I couldn't physically maintain the muscle control/tone that my joints seem to thrive with. But being aware how important good posture is for me, instead of crumpling on the sofa then wondering why I'm in so much pain with multiple joints feeling stretched and unstable, I created a supportive 'nest' where I could relax without anything 'hanging off the ligaments' - a pillow between the knees, a cushion at my waist, a pillow keeping my right arm from flopping forward and pulling my shoulder out etc. No position that triggered the sharp, stretching, pulling ligament pain or the pinch of joints starting to move out of 'good' positions. (Note: This 'nest' isn't something I use for long periods - otherwise I would weaken muscles and cause more problems by doing so. But I have found it a useful way of allowing my body to rest when I've massively overdone it, or am ill.)

Is my need for 'good posture' just because of a connective tissue disorder?

In the article linked earlier in this blog it states "Evidence based practice is a game of probabilities and the probabilities are well stacked against posture being a cause of many musculoskeletal problems." - This gives room for issues where posture is a cause. But it also made me think...well, could you argue that although my posture triggers the symptoms, the underlying cause may actually be my hypermobile-ness and connective tissue disorder?

Perhaps all I've written about is just because of my conditions and that for the non-hypermobile population there isn't such a thing as poor posture. I don't know.

I suspect my definition of 'good posture' covers what the physios were referring to as movement that is so important.

Either way, when someone says 'posture isn't important' or 'leaning on one leg will not cause problems' it is only my years of post diagnosis physiotherapy, management advice, and dance, coupled with reading up on exactly what physio's mean by 'good posture' that has enabled me to feel I understand it.

But what about pre-diagnosis, when I 'knew' I was average and healthy? What if I'd read or been told that posture wasn't important by professionals ....how would it have affected me?

I strongly suspect that, if worded along the lines of 'good posture isn't an issue' or 'there's no such thing as poor posture', I would have deteriorated faster and further. Not because there is a set position that is vital to human health, but because my definition of 'good posture' kept me from the extreme positions I can flop into. Which would have caused more pain - and likely more ligament damage. The 'good posture' concept helped me manage and minimise some of the effects of my hypermobility without me even being aware of my hypermobility.

In summary:

'Leaning on one leg' can mean different things to different people - and for some it does cause problems.

I agree that the solution for many (probably most - possibly all) pain-causing conditions is not to aim for a set, rigid, 'perfect' body position.

I agree that learning to move with confidence and strength, and to avoid prolonged static postures is likely to be of much more help than aiming for a specific posture.

But at the same time I would ask any professional reading this to remember that a patient's definitions of 'good/poor posture' might be different to yours. If a certain posture (or total flop position) which the patient calls 'poor posture' is causing them pain or other symptoms, then be aware that if you dismiss the whole good posture/poor posture issue - you may also be taking away a key to their ability to self manage and improve their symptoms.

Wednesday, 12 October 2016

World Arthritis Day 2016 - The future in your hands

Today is World Arthritis Day.

And so, as part of the #WAD2016 campaign "The future in your hands", here is a small part of my story of living with a rheumatic or musculoskeletal disorders.

As a child I was different to my peers - often injured, more easily tired, constant pain and many other issues, but those quirks didn't become permanently disabling until I reached my early 20's.

By 24 I had become a wheelchair user due to severe joint problems and pain caused by a hypermobility syndrome (probably Ehlers-Danlos syndrome) where my joints are too loose, and the ligaments are easily stretched and damaged, although I wasn't diagnosed for another year or so. I steadily deteriorated. By 29, long term sick leave from my Environmental Health career had become formal medical retirement. It was an incredibly tough time - I felt that I had lost a part of who I was.

However, during one of my hospital stays I discovered a talent for drawing stickmen. And it seemed that people understood these stickman descriptions of how I felt much better than my attempts to explain using words. The solutions to my own problems around 'how do I make them understand' became products that proved to be the solutions other people needed too.

So while volunteering for the Hypermobility Syndromes Association - which provided the support I needed in learning to pace, and to respect but not fear my conditions and to get stronger and more acitve (contemporary dance is totally awesome and works fabulously around my physically limitations!) I also found myself setting up Stickman Communicaitons - using my stickmen to help create understanding for others too.

My RMD took a career I loved, but it also gave me a new career - which I love even more.

So yes, I really do feel that my future is in my hands. Both metaphorically and physically!



Thursday, 29 September 2016

Creating Better Communication about Mental Health at The OT Show

Innovative new products from Stickman Communications® that can help people of all ages with mental health conditions to communicate about their needs and how they feel.
Mental health conditions can make talking about anything a challenge – let alone communicating about the condition itself in a way that other people can understand and relate to. Thanks to a recent project with a group of college students who live with anxiety, depression, and other mental health conditions, Stickman Communications® recently released a new range of mental health resources to aid in this area, and samples will be available to view on stand A34 at the OT Show on the 23rd & 24th November (at the Birmingham NEC), along with products relevant to pain, austism, pacing, wheelchair use, fatigue, invisible illnesses and much more.

As is typical of the Stickman Communications® approach, these resources don’t have a medical focus, but rather they address situations and misunderstandings that individuals with mental health conditions want and need solutions to.

The keyring communication cards do not only focus on things an individual wants to say but might struggle with (such as needing to talk, wanting a hug, or needing to explain that they don’t feel able to talk right now), but also on concepts that can be very difficult to explain or are often misunderstood by other people (for example explaining how their anxiety affects them, or what it is like having hallucinations). The cards can also provide prompts for management techniques.

"These cards are incredibly handy and provide a quick way to indicate how you feel or what you need. I find that they are really useful if you want to discreetly make someone aware that you need some extra support. They are also great for explaining what would help on an ‘off’ day."  (Mental health blogger: https://upsidedownchronicles.com )

An unexpected outcome of the project was a poster entitled “Mental Health: Things that can help”. “When discussing things which the students found helpful, it was quite difficult for them to come up with ideas, but the ideas they did come up with were so fabulous I had to create a poster out of them”, commented Hannah Ensor (the creative talent behind Stickman Communications®).


“….[These products] help me cope with my mental health issues because sometimes I sit and get bored and fed up and forget things that I could be doing instead of being bored of my own company and seeing this will remind me of other activities I could do to help with my mood.” (Customer review)
The full range of Mental Health related products can be seen at StickmanCommunications.co.uk/Mental_health - or come along to stand number A34 at the OT show and have a look at the range of unique products - all created by working with people needing solutions to misunderstandings about their conditions.



Sunday, 25 September 2016

Why you don't need to say "I'm sorry you're disabled."

A recent blog entry was "Why you don't need to be sorry I'm in a wheelchair".

I hoped it would help people see that I don't need pity for using a chair.

Interestingly I had several responses from different people in various places saying "but they were really trying to say I'm sorry you are disabled."

I know that. But from where I sit "I'm sorry you are disabled" is 99% of the time, also very negative and unnecessary.

It's a little tricky to explain, and this only skims the surface, but hopefully it will make sense.

Personally, if, in a disability context, I have said "this sucks", then agreeing "yes, it does" is fine.

In pretty much any other context "I'm sorry you are disabled" - however it is phrased - is not comforting, nice, or remotely supportive.

Consider scenario 1:

You are newly disabled. You have a lot to come to terms with. It's tough. You need emotional support from people you are close to - from people with whom you have the 'This Sucks' conversation. But not from everyone else. You don't want to be 'the disabled one'. You want and need interaction with people who validate you as a person, remind you that you are still part of society, and that there is more to life than disability.

You venture out. feeling vulnerable as your mobility aid makes your disability public and you worry that 'disability' is all that people will see.

And then a stranger comes up and says "I'm so sorry you are disabled".

Well intended, but what is the effect?

For me at this stage, it made me feel worthless. Pitiable. Without use and without future. Making my search for my new future even harder. Confirming that my disability was indeed all people saw, and it overshadowed all my other characteristics - even my humanity.

Consider scenario 2:

You have been disabled for years. You have a pretty good handle on where your limits are, have a stock of aids, adaptations, lifestyle choices and skills that enable you to get on with life. You often aren't conscious of your difference because it is so normal to you. Perhaps you are on your way to work, or perhaps you hare enjoying a special day out. Either way, you are getting on with the life you live.

And then a stranger comes up and says "I'm so sorry you are disabled".

It might be well meant again. But what is the effect?

Personally, I am blindsided. Alice down the rabbit hole. I don't know how to reply.

They see tragedy. I see me living a life I love. The two just don't match up.

I hear this type of comment almost every time I spend a day out and about. A barrage of pity for something that is a) my normal, b) something I can't change and c) doesn't stop me living a rich and full life.

Disability is an ever present part of my life. I can't separate it out. It is here for every positive experience and every negative experience. It is not good and not bad. It is just here.

Everyone has times when things are tough (problems with health, finances, relationships, family, etc). These are a part of being human. Everyone has them. They just aren't always visible to a passing stranger. My challenges don't make me pitiable just because you think you can see them (remember that sometimes people see difference, and assume challenge - when it's not really challenging at all). These challenges just make me human.

How would you feel about constant pity from strangers, in reference to something that is a) very personal, and b) your normal, every single time you go out, for the rest of your entire life?


I realise that sometimes people do feel sad or upset when they see a young disabled person. If you feel that way, please work through it yourself. Pitying me won't help either of us.

I was just finishing this blog post when a disabled friend (S) called for a chat. S had had a wobbly day and a woman had helped her out. She wanted to be supportive. After a brief conversation about S's disability, she stated "It's a tragedy". "Um...no actually, there's lots of nice things in my life..." The woman replied "No. It's a tragedy, you're so young, it's tragic." - and then left to answer a phone call.

How could a complete stranger see one small part of her life, and write the whole lot off as a tragedy? - How could someone be so completely unable to consider the possibility that S's life was good?

We chatted. It's such a common occurrence. And very, very unpleasant. How can we deal with it? Doing nothing means they will carry on with that behaviour, believing it to be 'showing support'. Being aggressive won't get the message across as they will think I've misunderstood their 'supportive action'.

Based on an idea from S, here's what I'd like to say next time:

"I know you are trying to be supportive, and mean well, but my life isn't a tragedy - it's just different. Everyone has challenges, and my life also has many good and happy things. There is no reason for you to feel sorry for me, so please stop. Please just stop."

So if you ever get the urge to say "I'm sorry you are disabled", please stop and think:
Will a pitying phrase have a positive effect? - If the answer is no: Don't do it.

Instead, let us get on with enjoying the lives that we live.




Saturday, 24 September 2016

"Change the Future" conference for young people with rheumatic and musculoskeletal disorders!

[I apologise for the number of acronyms in this!]

EULAR Young PARE are the voice of young people (18-35) with rheumatic diseases across Europe, and work to create improvements in the lives of young people with rheumatic and musculoskeletal disorders (RMDs).

You can learn more about them and their work here: http://www.eular.org/pare_young_pare.cfm

A few months ago, as their Patron for children and young people, I was nominated by the Hypermobility Syndromes Association to the Arthritis and Musculoskeletal Alliance (ARMA) as a delegate to help represent both organisations at EULAR young PARE's international conference on the 21st - 23rd October, titled "Change the Future."

Yesterday I received an email confirming that my nomination had been accepted, along with 3 other individuals who will also be representing ARMA.

So in a months time I will be off to Belgium to meet up with others from all across Europe to work on improving the lives of young people with rheumatic and musculoskeletal disorders - including the hypermobility syndromes and hypermobility related heritable disorders of connective tissue'

I don't know the details yet, but I really hope I can help create a better future for all of us, where our needs are better understood - and therefore better addressed.

Donna Wicks, CEO of the HMSA said "The HMSA is very proud that Hannah, our Patron for Young People, has been chosen to represent us at European level. Her understanding of living with one of the hypermobility syndromes gives an unique platform for her to share her experiences and knowledge. We will giving a full report on the conference on Hannah's return."

It`s a great privilege - and responsibility, and I hope that I can rise to the challenge.


Friday, 9 September 2016

Why there's no need for "I'm sorry you're in a wheelchair".

Not long ago I travelled across London by bus. During the journey I had a few brief chats with a few people, like you sometimes do on public transport. But 2 stuck in my head.

They followed the same lines: a few standard comments on the weather, roadworks, purpose of today's travel, which led into what I do for work and questions about my wheelchair and disability. Which I answered, because I felt like it, and because once we've got on to the subject of my job, questions about my disability are a natural progression - seeing as the business has grown from my disability.

Anyway, both conversations ended with "well, I'm sorry you are in a wheelchair."

Both times I felt....discombobulated.

[To discombobulate: to confuse or disconcert; upset; frustrate:]

I tried to reply. To say that my wheelchair was a) normal for me, and b) a very awesome piece of kit. The end of the second conversation was particularly memorable. Once he'd voiced his pity, every statement I made about the freedom my wheels bring, he simply replied with "Nevertheless, I'm sorry." Several times. It made my skin crawl. I fell silent. We reached his stop, and he got off the bus.

I know he was trying to be supportive, trying to be nice. But it wasn't. Just no.

Why was my reaction so strong, why was it such an alien and disconcerting concept?

Yesterday I realised the answer:
My wheels are the reason I can work. 
The reason I can get out of my house. 
The reason I can shop. 
The reason I can socialise. 
The reason I can dance. 
 My wheels are my freedom.

When someone says "I'm sorry you are in a wheelchair", to me it means "I am sorry you can work. I'm sorry you can get out of the house, shop, socialise and dance. I'm sorry you have freedom and independence."

Their pity makes no sense.

There are challenges in my life, but having the privilege of using an excellent wheelchair that suits my needs well and expands my world most beautifully is definitely not one of them. 

There is no reason to be sorry that I'm in my wheelchair.

Instead, there are many reasons to consider it one of the greatest inventions ever.

    

[Edited to add: You may also be interested in our next blog outlining why you also don't need to say you are sorry I am disabled.]

Thursday, 8 September 2016

World Physiotherapy Day: Adding life to years through Dance

Today is World Physiotherapy Day.

The theme this year is Adding Life To Years.

I often mention dance - it is something I love and my body loves and it's generally marvellous.

I am part of 'Dugout Dance' in Oxford. A group of adults of all ages (although I am one of the younger ones) and all abilities - from 'never danced before' to 'teach classes of their own'.

 (Image from the Dugout website)

I see my dance teacher (Cecilia) as "about 50" the reality is that she's....quite a bit older :D 

Some of the dancers in our group would also qualify as 'ageing' (shh, don't tell them I said that!) - for example, Alan (who I blogged about dancing with last weekend, see 'Dancing on Wheels. Together) is over 70.

And although I'm not ageing yet, I do have physical limitations which get in the way and can make me a bit more vulnerable or stop me doing things - which would make any environment with set expectations very daunting and make me feel like I've been set up to fail and constantly highlight my limitations.

In this context here are a few observations on why Dugout dance seems so effective at getting us who have limited abilities to move with confidence and joy:

1. It isn't aimed at 'ageing' or 'disabled' people. It's is contemporary dance for people. It is the dance that is the important thing, not the age. It is dance for everyone.

2. Praise, appreciation and encouragement are common - but never age or ability related. I don't think I've ever been 'complimented' at Dugout with the proviso "for a wheelchair user" nor heard a compliment tagged with "for your age". Each dancers style of movement is appreciated on its own merit, as legitimate dance rather than 'a good attempt but of course it's inferior due to your age/condition'. (OK, people probably don't actually say that, but it can feel like it's implied or subconsciously believed.)

3. Although technique is sometimes formally taught, it isn't so that everyone moves exactly the same, nor is it to 'correct' errors, it is so that we can build on our natural movement so our dance becomes better. Not about judging but about dancing. And even here, we adapt where we want to.

4. Everyone adapts. So even though your adaptation might be unique, it's a total non-issue because everyone else's is too. 

5. Instructions contain permission to be different. One of the standard phrases is "Sitting, standing or lying, I want you to....." - No pressure to do things you aren't comfortable with. Which slightly ironically makes me more likely to try challenging things - I feel secure, and if I fail it's no big deal.

6. Sitting out when you can't do something is rare. It sometimes happens due to injury or fatigue, but the norm is to adapt. Can't get down to sit on the floor today? - no big deal, sit on a chair, or stand. Feel to wobbly for jumps today? - no big deal, use the upper body to convey the feel of it, or bend the knees and then straighten them so you 'rise' - or do whatever works for you. I've even spent the majority of a class lying down because I was too tired to dance sitting up - but I was still dancing, still moving, still simply a part of the class. I have never heard an adaptation belittled. Usually they pass as an unremarked normal, although sometimes Cecilia calls out "Brilliant adaptation there!"

There was one particular time I remember clearly. I'd had a pretty rough day so was feeling quite fragile. One of our older dancers was feeling very fragile too. I pootled along dipping in and out of the dance as I felt able to. At the end we were in a circle, dancing. He sat on a chair - joining in a little. I was sat on the floor. Most people were standing. Both of us were close to having run out of energy I think - so we danced together, small and slow. Small hand movements, - connecting through arms or gentle touch, no travelling, lots of pauses in comfortable poses - still dance, and unremarked in the environment of adaptation and acceptance that is so strong at Dugout, but also dance and movement that wouldn't have been possible in the average dance class. It was dance and movement that worked for us and was totally 'part' of the wider class whilst also being very different. Still directed by the class instructions, but not dictated by them.

Perhaps that is the key. That instead of instructions being seen as laws that must be followed or you fail, everyone there feels guided by them and supported in finding their way of moving.


This gives me freedom to move with confidence and without fear of getting it wrong. Because in our dance group, there is no 'wrong'.

Sunday, 4 September 2016

Dancing on wheels. Together.

As many of you know, I dance on wheels.

Yesterday we were rehearsing a new piece, and it was a mix of people from my usual dance group and some others.

One of the other dancers was Alan, also an active chair user. I met him on my first ever dance class - which must be around 5 years ago. I don't think I danced with him personally though.

Back then I was a total novice.

A few years after that I danced with the lovely Mark Stone at the very beginning of his journey with ALS/Motor Neurone disease. It was fun. I was a little more experienced, but Mark was a novice like I had once been - I think I danced with him one of the first times he'd ever used a wheelchair.

But yesterday was different.

I am now a fairly experienced dancer. And I was working on choreographing a short duet with Alan, a very experienced dancer (with guidance from our teacher - Cecilia Mcfarlane, of course).

The first moments were awkward. I had no idea where to start - I don't think I've ever even seen 2 wheelchair dancers dance a duet. My mind was blank - I had no visual memories of dances to use as a reference point, and no personal experience to fall back on.

But quickly it became enchanting.

I was dancing with someone who's movement across the floor was in the same language as mine. And it was a language both of us knew well and loved.

I can't put the beauty of the experience into words, but I will always treasure it.



Thursday, 1 September 2016

If ability to walk meant no use of a wheelchair...

Some wheelchair users have no ability to stand or walk at all.

Everybody knows this.

But did you know that many people who need a wheelchair can stand and walk?

Why would someone with the ability to walk choose to use a wheelchair?

There are many reasons:
Keyring card titled "There are many reasons to need a wheelchair" with 5 stickmen below: one in pain, one falling over, one with uncoperative legs, one flopped over with fatgiue and one dizzy and wobbly. Further text continues: Many wheelchair users can stand or walk a little but need a wheelchair for activities they otherwise couldn't manage. Many conditions are variable so an individual may only need a wheelchair some of the time." 
So let's take me as an example:

My condition is variable, but on a good/average day I can walk about 10 metres before my POTS (heart rate/blood flow problems) kicks in with a vengeance, and I get increasingly light-headed, fatigued and uncoordinated - with the result that my walking deteriorates rapidly and by about 15m I'm staggering. If I try and push myself further I am likely to crumple to the floor with stroke-like symptoms that can take hours to recover from.

In addition my over-flexible joints are difficult to control. I do hours of exercise every week, and spend much of my day using my limited energy to keep them in good positions so I strengthen rather than injure or stretch them. Using muscles whenever I can is vital to managing my condition. But on the flip side, attempting to do things when I'm highly fatigued or am very uncoordinated due to POTS will almost certainly result in injury (or I'll just totally fail to complete the task.)

The result is that I usually have a safe walking distance of between 0 and 10m depending on the day.

Can you imagine trying to live within that 10m radius?

How far is your work from where you park your car?
How far are the bathrooms from your work area?
How far from the railway station entrance to the platform?
From the nearest parking space of a supermarket, to the bread aisle, then the checkouts?
To your friends front door from the road?
To the restaurant from the carpark?
What about your kitchen to your bathroom?

Visiting pretty much any park, museum, beach, or cinema would exceed 10m.

The reality is that if I had to rely solely on my legs I would have to:
Close my business and stop work
Stop using public transport
Stop living alone - and probably have full time carers
Stop visiting friends
Stop going to church
Stop shopping
Stop going to the park with my nephews and nieces

I would effectively become stuck within my home - and not even be able to get between rooms sometimes. And on top of that, be unable to manage my conditions effectively.

Add to that the fact that prolonged sitting can also cause problems with my pelvis and my blood flow. Even if I'm not well enough to walk at all, holding something so I can stand up and wiggle (or moving to somewhere I can lie down and wiggle) is something I have to do periodically throughout the day.

So next time you see someone stand up out of their wheelchair, or even walk away from their wheelchair, remember that it doesn't mean that they are faking it, it means that their ability to walk is limited.



Monday, 22 August 2016

My favourite accessible loo

Accessible toilets are a strange breed.

There might be a standard 'standard' that they should all meet, but in reality disability is often so complex that a generically 'accessible' loo rare, and every loo is different (and that's without considering that many technically accessible loos that are used as storage rooms, rendering them inaccessible.)

For example, some people need space to the right of the loo to transfer from a wheelchair, some to the left.
Some people need adult sized changing mats, others need a toilet, and others need to empty appliances.
Some people need grab rails within easy reach of the loo - while others need free space around the loo so their chair can get close enough.

Trying to fit all this into one bathroom is challenging, but it's doable.

My favourite loo does an amazing job of covering a wide range of needs (although I'm not sure how well it would suit someone with a visual impairment.)

It is at Paddington Railway Station, near platform 13.

It has:

An adjustable adult changing mat with hoist, and shower.

A separate level access shower with seat
A toilet with fold down grab rails, and lots of room both sides for transfers.

 An adjustable height sink that a wheelchair user can easily use.
 

Seriously, it is SO nice to wash your hands without having to do minor contortions to get your arms up and over the side of the sink but under the taps in a standard sink - while simultaneously trying to get close enough to reach without crushing your legs between the chair and the sink.


It's massive and spacious and clean and marvellous and has everything I need - and many things I might need in the future.

True, the hand soap is strangely distant from the taps - a second one closer to the sink would be great, but it's still the best public bathroom I've ever been in. In the same way that one rarely passes ones favourite coffee shop without popping in, I rarely pass through Paddington without stopping there.

So big thanks to Paddington Station for a fabulously accessible loo.






Sunday, 14 August 2016

Lazy - or necessary recharging?

Humans have a finite amount of energy, and if we push beyond our limits we need to recharge.

In reality it's not easy. Especially when you have a condition that means you have less energy to start with than average (for example many hidden disabilities and invisible illnesses), or that your energy is used up more quickly (such as through pain, sensory overload or stress).

It has taken me years to get a decent grip on recharging - and I still often don't get it right.

Part of my brain knows that I have limited energy, that some things use it up very quickly and that certain symptoms mean I need to recharge (like increased difficulty concentrating, loss of word-finding abilities or speech, reduced coordination, feeling overwhelmed by situations I am normally fine with.)

But another part of my brain looks at what I have done and says "You really shouldn't be this tired! You are probably imagining it" or "Stop being lazy and get up and do something constructive" and feels guilty for not doing what it feels I should.

If I listen to that I end up pushing on until I crash (i.e. reach the point I can barely open my eyes and even eating is a struggle). And by continuously trying to push further I never quite recover - feeding a downward spiral in my health. It takes a lot of courage to go against the belief that "I am a failure if I recharge when I need to".

I've been learning recognise my 'early warning' fatigue symptoms and getting better at consciously taking time out to recharge - and as I recharge earlier, it's doesn't take me as long and gives me more time and energy for living. It's really rewarding - not least because when I get it right I actually spend a lot less time recharging.

But it's still tough.

And sometimes usually supportive people make it tougher. People I care about and who I know care about me can try to encourage me with things like "You just need to push through the tiredness" and "Don't be lazy." - which means I try to push through when I should recharge, with the effect that I become less and less able to do things. It's counter productive even though it is meant well.

There may be situations those comments are appropriate (I am very capable of being lazy :D) but when I'm in a downward spiral of exhaustion, then they are damaging.

It is much more encouraging if someone asks me whether I can arrange extra recharge time afterwards in case I need it, or whether I  have the next days' meals all ready so I don't have to cook, or finding somewhere quite so I can have a rest partway through an event or outing - or at least recognises that these techniques might be needed.

Over time I have been able to surprise myself with how quickly I can recharge when I take breaks at the right time - enabling me to try more, and actually helping me build stamina and strength - which feels counter intuitive, how can taking breaks improve stamina? -but it honestly did for me!.

Recharging isn't about hiding from life - it is about temporarily stepping back in order to get the most out of living in the long term.

My need to recharge is real, and when I recharge it isn't a failure, but a beautiful success from which I can emerge in a better state than before.

(Random side note: For me a recharging day is rarely staying in bed all day. I recharge better by doing small gentle movements between rest breaks, and getting up to do simple, short tasks before resting again. If I don't keep moving within my recharging I tend to get worse instead of recharging. I guess the human body was designed for movement. Another key part of my recharging is being REALLY strict with things that take concentration - including avoiding social media and interesting movies! )


Wednesday, 10 August 2016

Why shouldn't I pet the assistance dog?

I didn't see why petting an assistance dog is such a bad thing. I can understand why you shouldn't pet them when they are guiding their owner (that could cause a collision!), but when they are just sitting or not doing anything, surely it can't hurt.

Can it?

I can understand why some people feel the need to make a fuss over assistance dogs.

However, through recent conversations with assistance dog users I have discovered that the dogs are often still working even when they are apparently resting.

When they are walking they may be guiding - but even when stationary they may be assisting with balance.

They may need to be ready alert to medical conditions (such as high or low blood sugar, or the early signs of a seizure) or to sounds such as a telephone or a baby crying.

They may need to be ready to pick up things that have been dropped or fetch items, or any one of a huge number of other things a dog can be trained to do.

And even if they currently have no specific task to do, disrupting their concentration can mean it takes a long time for them to refocus- making them unable to work when they are needed.

So I, for one, will be making sure I don't put an assistance dog user at risk by interacting with their dog. I can always ask permission - but if it is not given I will leave the dog alone.


(Keyring card available from www.stickmancommunications.co.uk )

Thursday, 4 August 2016

Olympics, Paralympics, Superhumans, and me.

I loved the 2012 Olympics and Paralympics and can't wait for Rio.

The athletes' skill, dedication, courage, determination, and single minded years of hard work all resulting in superhuman feats of strength, speed and/or skill. And I look forward to trying to capture some of those moments in 'stickman'.

But while I have been looking forward to The Games, I have also heard people with disabilities react very negatively to the 'Superhumans' advert for the Paralympics.

Yesterday I saw the advert for the first time.


For 95% of the ad, I loved it. One minute these people with disabilities were doing normal things (working at a computer, brushing their teeth - And by the way, keeping your teeth clean is a life-skill. There is nothing superhuman about it whatsoever, whether you use the standard technique, adapted technique, or have someone help you.). The next minute they were doing something extraordinary. Racing, climbing, competing at the limit of human capability, having dedicated huge amounts of time and effort into building that super-human skill.

Like superman. One minute he's Clark Kent doing the mundane, everyday stuff. The next he's doing something extraordinary in his superman suit and saving the world (his lycra suit makes the parallel with sport even closer :D)

I loved that concept.

I loved it because it took difference and made it normal.

I loved it because when my normal is accepted as my normal, then my achievements can genuinely be appreciated.

I loved it because it gave people with disabilities the chance to be both ordinary - and extraordinary.

Then we approached the end of the ad...

And I realised that the concept I 'saw' in the first part of the ad wasn't the message of the advert as a whole.

Lots of the people shown were only doing normal stuff - the girl on the trampoline, the kid having a drink, the boy kicking a football. All every-day stuff. Many of the people shown had cool adaptations and ingenious ways around problems, but that's not superhuman. Why? Because the capacity to adapt to the situations we are in is totally human. A child with disabilities playing in a way that works for them should never be seen as superhuman - it should be seen the same as a non-disabled child playing in a way that works for them: normal, healthy and human.

And being human isn't superhuman.

Elite athletes (whether disabled or not) are another matter entirely. They do normal stuff - but in their chosen field they are truly exceptional. Being the fastest person on the planet without an engine in pretty much any context is definitely something I'd class as superhuman!

Perhaps this message of 'all people with disabilities are superhuman' was unintentional. Without that aspect, I would have loved the ad, found it positive and empowering. But as it is it leaves a unpleasant taste.

I get that depicting someone with a disability as superhuman for getting on with their life is better than seeing disability as sub-human.

And yes, the 'yes I can' attitude of 'I want to do this, I just need to find the way that works for me' is praiseworthy. But not superhuman.

By seeing the 'different normal' and all the ingenious solutions that allow us people with disabilities to function in a world designed for non-disabled people as 'superhuman', hard won achievements are reduced to the same level as routine tasks that come easily.

And with the 'superhuman' label comes the problem that I am not allowed to just be human.

And that makes me sad.

Tuesday, 26 July 2016

Wheels at the beach

I spent Sunday on the beach at Southsea with family. It was lovely.

Well, most people would say lovely and mean hot and sunny. Actually, it was overcast with a few burst of sun, warmish but with a brisk, cooling, breeze. Proper English beach weather where you wear your swimming costume and a hoodie. So it was my kind of weather!

It is nearly 10 years since I was last at the beach. Beaches are not wheelchair user territory.

With my X8 (which I still can't quite believe I have!) the beach has suddenly become accessible. It's exciting, it's fabulous, it's...hard to explain how lovely it is to be along in traditional family trips and able to be fully involved with everything.



Here are a few highlights:

Having a lovely long chat with my older sister on the way.

Swimming in the sea! (Hurrah for wetsuits - they give my joints a bit of essential support)

Doing crosswords with 2 small ones while wrapped up in towels and hoodies.

Watching a small one play 'shooting robots' with my chair controller. His imagination is awesome :D  (Yes, I'd unplugged and deactivated it, so no risk of him wheeling off)


Discovering that the X8 does shingle more easily than feet do - although I did have to route around the really steep bit with very small stones. The pretty steep bits with slightly larger shingles it managed fine.


Watching small ones on the bouncy castles - and realising that my bootlace was the perfect solution to loose trouser elastic.
(I admit we laughed. A lot. We were helpless in the face of the pants-revealing ankle-trouser phenomenon.)

Eating dinner at the 'Giraffe' and playing at pulling faces through the water jug at a small one.

Utterly exhausting, but totally worth it!

:)


Saturday, 16 July 2016

A bendy perspective on hypermobility and injury.

Injury in hypermobility syndromes (such as joint hypermobility syndrome, Marfan syndrome, Ehlers-Danlos syndrome [EDS] and stickler syndrome ) is a big area. This is a brief personal look at just a few aspects. Other people will have different approaches that work for them.

In someone with a hypermobility syndrome (HMS), who gets far more than the average number of injuries such as sprains, strains, dislocations and pulled muscles, what is an HMS related injury and what is a 'normal' injury?

My current answer would be:

If what happened carries a high likelihood of injury in an average person, I class it as a 'normal' injury. Sprains, strains, breaks - and even dislocations - from a fall are 'normal'. So are pulled muscles/ligaments from walking on rough ground or overdoing an activity. These 'normal' injuries will be affected by my HMS - a longer recovery time, and tweaks needed to rehab exercises, but aren’t really caused by it.

If, however, the activity I was doing would normally carry no risk of injury - and I managed to injure myself anyway, then I would class it as a 'HMS related'. Injuries that fall into this category include dislocating my wrist when attempting to cut a mushroom.

Then there is a grey area, where, for example, my injuries are more severe than would be expected in a non-bendy person.

Personally I categorise these as "'normal' injury – but probably affected by my HMS" where-ever possible. Because this works for me.

You see, I have to live with my HMS. I cannot afford to be afraid of it.

As a young adult with rapidly escalating injuries and symptoms, and a rapidly increasing level of disability, I was diagnosed as having an HMS -probably EDS hypermobility type. Initially I saw every injury and pain as ‘because of my EDS’ – my condition that was genetic and therefore always going to be with me, and was responsible for taking away my health and my independence. Everything that happened was further evidence of my EDS and the very fact that EDS is genetic meant I saw no end to the symptoms and no chance of improvement: because there is no cure for EDS.

Over time, however, I discovered that with the right input (the right meds, pain management tools, exercise, lifestyle, pacing, and more) things stopped spiraling out of control. Limitations I thought were forever turned out to be temporary, and limits that I thought meant I could never achieve turned out to mean I could achieve differently. That, in essence, my EDS reduced the ability of my soft tissues to cope with stressors/forces, and delayed my healing. But that didn’t automatically mean ever increasing injury and pain. By learning what my body could cope with, I could start to live more within those limits and begin to strengthen without injury – or at least, with fewer injuries, slowly increasing my body’s ability to cope and expanding those limits. I also started to have more sensible recovery expectations for injuries and more effective recovery strategies.

So now, instead of seeing every injury as “because of EDS” I think "hmm, I need to strengthen those muscles a bit before doing that again" or "I won’t try that again when I’m this exhausted" or "until I'm stronger, I really ought to support the joint for that activity"or "I overdid it a bit there!" - each of these injuries comes with a little piece of my life's jigsaw puzzle that will help me make better decisions in the future. And carries with it the hope that I might be able to avoid a repeat. As time has gone by I have been able to build strength and re-try things that previously caused injury – and found that I can now cope with them!

Yes, there are many things I suspect I will never be able to do...but my views on that change over time. 6 years ago I was sure I’d never be able to run a business or dance – my levels of injury and pain were just too high. But that is exactly what I am doing now. True, I do both differently, but I still do them.

I have also learnt not to blame myself for my injuries (unless I did something I knew would cause injury – and then I’m only repentant if it wasn’t worth it). I know that my EDS makes it easier for me to get injured, and my ease of injury seems to vary depending on strength of muscles and ligaments, fatigue levels, stress, nutrition, hormones, level of symptoms from postural orthostatic tachycardia syndrome, previous injuies, illness and more (this isn't necessarily scientifically proven fact, just my observation of myself). Some of these factors can fluctuate massively. No way will I always get things right, but I’m loads better at getting it right than I was, so I count that as a win. And when I do get an injury, well, it can’t be helped…and that’s a bit more that I know about my current limits.

If I am unfortunate enough to experience a major injury, illness or life change that interferes with my HMS management, I am under no illusions about how much this could change my physical state and abilities. Should that happen, I hope I will be able to find the strength to continue this process of learning what my body can cope with at that point in time - and how to give myself the best chance of maintaining or improving that level.

So overall I view my EDS as reducing my connective tissues default level of resilience rather than as the cause of all my injuries. This means I have to be more aware of what I do and how my body responds, and keep as strong and healthy as I can to maximise my resilience.

It helps me respect my hypermobility, but not to be afraid of it.

It works for me.

(Note: for more information on hypermobility syndromes see hypermobility.org - the website of the Hypermobility Syndromes Association, which holds the NHS Information Standards quality mark.)

Saturday, 9 July 2016

Chronic pain, fatigue, and lessons from an insect bite.

I live with pain and fatigue on a daily basis. It is my normal.

A normal which can be pretty unpleasant at times, but hey, you deal with it and find ways to live a good life alongside it.

But when someone starts complaining about a one-off ache, or making a huge fuss over a sprained ankle or other temporary injury it can really get on my nerves. That's like normal daily stuff for me and yet they make SUCH a fuss!

But this last few weeks I learned a lot..... 

It turns out I am slightly allergic to bites from...whatever it was that bit me. 3 bites in the last 3 weeks - which all turned into huge welts - 9cm's long and itching HORRIBLY.

It's not something I am used to, and it was awful! I couldn't sleep, couldn't concentrate, and kept searching for something - anything that would help. I posted on social media and asked friends for advice. I even saw a medical professional (pharmacist) 3 times.

It wasn't my normal. It wasn't something I was used to. I didn't have the skills or knowledge to enable me to take a wise course of action - take the right meds, have a sensible expectation of duration and an arsenal of coping techniques.

There are people out there who deal with allergic itching on a regular basis - to whom my desperate rants and medical enquiries over a simple bite must have seemed pretty pathetic.

But it's OK that I didn't know how best to handle it because it wasn't something I was used to.

I need to remember this when someone else has an injury/illness that isn't their normal. Just as I wanted support, help, a bit of sympathy and chocolate to help me through, They are entitled to the same.

We are allowed to struggle to cope with symptoms that aren't part of our normal.

All of us.

Not just me.

Tuesday, 5 July 2016

Taking disabled access at face value.

When going anywhere new I do a lot of background work. I never take 'it's accessible' at face value.

Pre-disability I knew that most places were accessible because the law said they had to be, and one sees 'accessible entrance' signs, and 'accessible parking' signs all over the place.

Now I have years of experience of 'accessibility' that isn't accessible - from "it's only 1 step" to "our disabled customers don't usually go to the bathroom on their own, so not being able to open the door from the inside when using a wheelchair isn't usually a problem." (see 'Toilet Traps')
Add in heat intolerance, limited arm strength, etc, and the only way to be sure I can achieve what I set out to do, is through a whole lot of research - which takes time, and a lot of energy. Frustrating when I don't have much energy to spare.


Today I needed to drop something at a local small business. They said they were accessible. I didn't want to investigate. A little personal rebellion against the huge effort this process usually takes.

So I didn't investigate. I just went. No further checks. Flying by the seat of my pants and hoping for the best.

...actually, I had a back up plan of "If it's not accessible I'll stay in the car and call them, and they can collect it from me." - to risk an adventure without a back up plan is a step too far for me. 

You see, the problem with rebelling against the need to personally investigate accessibility for every venue I go to (often several phone-calls, emails, plus googling), is that if it goes pear shaped, the only person who it's really going to affect is me. So if I'm going to risk it, I have to know that the cost won't be too high.

The result:

I arrived to find 1 disabled bay. Occupied.....oh hang on, there's a second one the other end of the row, and really near the ramp! Good.

I got out of the car and into my wheels.....Oh. The ramp might be close, but the dropped curb to reach the ramp is 10m's away - but on the plus side, it exists.

So I wheel away from the office, up the dropped curb, back to nearly where I started from, up the ramp and to the doors.

Heavy doors.

Very heavy doors that open outwards. I always find it harder to pull a door open than push it.

I managed - tricky but doable.

I'd made it into the lobby. Oh blast. More heavy doors. And no doorbell or anything to call someone. Doors behind and in front - well, I've made it this far, so let's go for it.

Hoik

Done it. Through the door and at reception.

Items dropped off. Success.

Turn round....door.

I would like to say I was sensible and got someone else to open it.....but...when I'm low on energy, thinking up sensible solutions and explaining them to someone else is actually really difficult - even for simple solutions like asking someone to open a door for me.

What actually happened is that I opened the 2 heavy doors again without help. After which point I realised that I'm going to have to be a bit careful with my elbows for a while - I don't think they appreciated it.
And now I'm home. Mission accomplished, and I didn't do any planning.

Part of me is relieved and pleased. I did it. I went somewhere new without any advance research beyond 'is it wheelchair accessible'. For a small business it was delightfully accessible in comparison to many experiences I've had.
But part of me (including my elbows) is disappointed and frustrated. It was so nearly fine. But I'm kicking myself because if I'd done my research I would have known about the heavy doors, and arranged for staff to open them for me. And if I'd done that, I wouldn't be paying the price now.

It's a very strange feeling - these opposites mixed up inside. But perhaps the main things I have carried away from this are:
  1. Sometimes I can get away with not planning, but there is likely to be consequences.
  2. The level of planning I do normally isn't excessive or paranoid, it's just sensible. 

Saturday, 25 June 2016

Adaptive Gardening

In between the bouts of rain I spent this morning pottering in the earth.

The patch I was working on today had 3 young oak trees - about a foot high. Probably planted by a squirrel, but now we have discovered them we want them to grow up healthy.

Only problem is...nettles. Millions of the things. A whole jungle of them hogging the light and stealing the nutrients, choking our little 'mighty-oak-to-be's.

My job was to clear an area around each sapling. To let the light in and take away their competition for a while.

Here's my 'Kit list':

Off Road Power Chair (if you are a regular reader you'll know how much I love my X8) - to get me to right next to the mini-oaks
Strapping, taping, or lycra orthotics from neck to hands and toes (to give me a chance of keeping my joints in roughly the right places)
Supportive boots that are good with mud (OK, more like 'already covered with mud, and won't be ruined by my bendy-legged habit of sitting on my feet')
Dancers knee pads (so I can slide out of my chair and crawl without hurting my knees)
Dungarees ("Overalls" if you speak US English) (Covering the knee pads, and also stopping me from bum-shuffling further than my trousers...)
Long sleeved rugby shirt with elasticated cuffs. (Essential nettle protection - their stings get through lycra compression top plus tubigrip!)
Wrist braces with metal inserts (so I can apply pressure through my hands without as much injury)
Bramble proof gloves (they tend to be nettle proof too)
A big bag for uprooted weeds.
A hat. (A new addition to my gardening kit, because I always get mud in my hair.)
And my little garden fork with it's adaptive grip and cuff attachment.
Like this, only a fork....and with the cuff bit added from the image below.
How I love this little gadget! Instead of having to grip the fork properly when using it, I just have to place it where I want it, lean a splinted hand onto it so it goes into the ground, then lean my arm against the cuff and let my bodyweight magically uproot the local nettles. Then scoop up the loosened nettles into the bag.

 And after a couple of hours of mud crawling and fork-lever-ing (interspersed with resting and chatting) the three lovely little spaces were cleared. The young oaks can breathe again.

An exhausting but lovely morning.

And I STILL got mud in my hair!

[Note: You can get the handle adaptor and cuff from quite a few places, including the HMSA's shop - Hypermobilityshop.org - and no, this isn't a sponsored post in any way, I just love my gadget and thought you might like to know where you can get them from.]