I am having a huge, huge, huge spasticity flare and have been since Tuesday night.
I know what caused it and on the face of it, it is was a good thing. I go to sailability on a Tuesday evening and they use
a hoist to get me in and out of the boat. This means that my legs get
moved a bit to put the sling on me and then when they start hoisting the straps
go tight which pulls a little bit.
And then this tuesday I sailed by myself and in the single seater access dinghy you sit with one leg each side of the controls – which meant my legs got positioned in a way that they don’t usually and they don’t really like. Although it was good for them as it stretched my muscles out. Add to that the fact that my Dad drove this week and Neil is too long to sit anywhere but in the front seat with it as far back as it goes and so immediately after all of the pulling and stretching they then got squished up. So, we’ll say goodbye to being in pain and hello to awfully painful can barely tolerate it stiffness and spasticity!
I am feeling very lucky (and this has reminded me of that) that I have access to antispasmodics and painkillers and other forms of managing this even if I cannot eliminate this. And also lucky that I have the opportunity to go sailing and enjoy it even if it causes this. Because in some other country in the world there is probably another girl, aged 24 with CP. Maybe her name is also Emma, I don’t know. But she doesn’t live in a country with hoists and access dinghys so she doesn’t get to sail. And she might be in just as much discomfort and pain as I am and in her country she doesn’t have access to the medications and heat packs and gel cushions that I have.
So yes, I feel cruddy. But… I don’t feel sorry for myself that I’ve got CP and my legs are more spastic than I can remember them being in forever. I feel lucky that I’ve got CP, my legs are more spastic than I can remember them being in forever and I live in the UK with medical care and have access to drugs to treat my symptoms with.
It is getting better now and I’m sure in the short term it was good for me (and in the long term it will be good for me as my body will adapt) but in the medium term I’m lucky however not liking it. I am liking my increased baclofen dose however.
But not loving it.
Because like I said, I need a spell in the taffy puller. Think Mr Wonka would let me?