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 )

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 - 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.