Hurricane Dystonia

The calm before the 'storm'..........

Every so often, Elin's dystonia will really get me down. Most of the time you just manage it as best you can and take the good times as and when they come. Sometimes, though,  it's impossible not to get a bit overwhelmed by the situation. Usually this happens after a really good spell, so you are reminded of how much easier life is when Elin's dystonia isn't bothering her and she will just sit happily in a chair. It doesn't feel like a lot to ask and yet the simple fact that Elin can quite often find it impossible to sit in her wheelchair has made, and continues to make, life really agonisingly difficult sometimes.
It's not the disability, ironically. Aside from the lifting, you can get really used to life when someone in your family has wheels where their feet should be. We have hoists, we have an adapted car, most places we would want to visit these days are disability-friendly. But show me a dystonic girl and your world can suddenly feel very small, since there is a Catch 22 of a 9 year old child who can't walk but can't sit in a wheelchair either.
It's heartbreaking for Elin, she loves to be out and about and nosey and sociable - when she is dystonia free. But if it has hold of her doing almost anything/going anywhere is either a huge mission or just impossible, especially now she is so big. She needs to be lifted in and out of her chair every five minutes. It's hard.
I get asked a lot what dystonia does to Elin when I'm trying to explain it. I think until you see it, it's hard to imagine. Elin will start by pushing down through her feet onto her chair footplate. Her head will start whipping from side to side. Her arms will fling out, repeatedly. Then the all-over body shaking, red face and gasping for breath will start. It looks pretty much like a full on epileptic seizure . Absolutely awful to see and god only knows how it feels for poor Elin. I would upload a video but that would feel like an invasion of Elin's privacy and besides you probably wouldn't want to see it. Needless to say when it takes hold there's no stopping it until you take her out of the chair, at which point thankfully she will relax. It's just that taking her out of her chair is no longer as easy as it once was- my bad back is testament to that. However the worst part has to be the car journeys.
Travelling anywhere when Elin is in the grip of dystonia becomes traumatic, stressful and upsetting. This weekend we were blessed with rare bank holiday sunshine and we decided to go the beach (given that we can never go far we are incredibly lucky to live an hour from the North Wales coast- it's so stunning) Elin's dystonia had actually been amazing all week, following a few awful weeks, so we thought we were winning. She was great on the way there, I couldn't wait to get her out and go for a gorgeous roll along the seafront. But for whatever reason (and there is no reason, or pattern, as far as any of us can tell) she just stopped being able to sit shortly before we arrived. Thoughts of walks were abandoned as we had to stop every few seconds to re-position Elin and make sure she wasn't damaging herself. In the end I found a bench where I could lift her out and Paul went back for the car to drive the rest of the length of the prom to get to the beach.  We parked her chair as close to the beach as we could then carried her down and quickly got her onto a picnic blanket, which thankfully she was able to relax and enjoy before eventually having to concede to the dreaded and traumatic journey home. I sit next to Elin's wheelchair in the back of the car now so I can attempt to comfort her. Nothing much works apart from bending her forward, so she's leaning right over her own knees, with my arm stretched around her back as I try and twist sideways to do so from my seat belted position. Not fun.
In June we finally have a meeting with the UK's leading expert on dystonia, Dr Lin at the Evalina Children's Hospital in London. It is a great irony that we have to travel for hours to get some advice, when travelling for hours is the one thing Elin can't do, but we really feel we need an opinion from someone who may have seen it in this particular form before. Keep your fingers crossed for us!
I share this post with tags in the hope it will reach someone else on the wonderful world wide web who is going through this. Most of the dystonia I have come across so far has not taken this form of being triggered by seating or standing frames (and yes we have tried every seat and wheelchair under the sun). If you're reading this and it sounds familiar please get in touch, I feel your pain!
In the meantime until we find a cure, if there even is one, we just have to continue to 'manage', which now unfortunately has started to mean thinking very carefully about where we are able to go and what we are able to do as a family more than ever following her growth spurt. I find myself struggling to say I wish Elin wasn't disabled because it feels like a betrayal of who she is, it feels like saying I want her to be someone else somehow, that she's not good enough- and that feels wrong. But I do wish with all my heart that she didn't have dystonia, right now I'd give my right arm to be able to go on a simple day out without it turning into a nightmare of epic proportion and without the three of us ending up exhausted and upset. It would be awesome to go for a walk without having to get a babysitter, to just do some really mundane ordinary stuff as a family together. It's like being hit by a Tornado, you have no idea it's coming you just have to hope for the best, wait for it to pass and deal with the results in it's wake. Probably no coincidence that bad attacks of dystonia are known as 'Dystonic Storms'. To go for a stroll on a bank holiday Monday instead of being house -bound (thank god for the garden) would be amazing. It doesn't feel like a lot to ask really, given what Elin deals with every single day with a smile on her face. She just deserves better. I hope the great and powerful Wizard Dr Lin can help and our trip in June isn't wasted! Because getting out and about and taking Elin to lovely places along with the rest of the world on a sunny bank holiday is something which I, in the words of Dorothy Gale, think I miss most of all.

On the plus side I must be developing arm muscle tone to rival Venus and Serena- no need for a gym membership when you have a dystonic nine year old! Every cloud. 

Have a lovely week, folks.

xxxxx