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.


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.