Living with Cerebral Palsy 🍋🍋

Sunday, 10 July 2016

I hate you so much right now...

Some days you just have to dig deep. Today is one of those days. I'm lying here watching Wimbledon, detached completely from it,  with Elin lying on me and I'm digging deep. I got Kelis circling in my brain because her voice in its screaming anger echoes exactly how I feel. Elin is continually writhing and very stiff today, not comfortable in her own skin, not comfortable on me, or anywhere. The dystonia has her little body in its jaws today and isn't letting go and I have to stand by and watch the monster. We tried to take her out before, the guilt of keeping her inside on a weekend predictably eating away at us, but the guilt of taking her out and thus upsetting her dystonia further predictably crushed us in the end anyway . It's a lose-lose situation. It poured down without warning and she thrashed and grunted in her chair whilst we couldn't lift her out because, you know, we were all getting soaked. There were shelters but no seats and how do you stand carrying a chunky eight year old for very long? You don't. Fighting with her chair in and out of the car restraints, fighting against the dystonia rendering her practically impossible to hold. Fighting against the rain, fighting against the urge to scream and the lump in your throat because you just wanted a nice afternoon out of the same four walls. For her. For us. I'm sick of fighting. When trying to do the simplest of things involves a struggle at every turn it drains you. My left hip is screwed from holding her, it constantly aches and clicks and wakes me up and I'm too scared to go the doctors because, really, what am I supposed to do about it? So I fight that too.  I got up seven hours ago and I want to go back to bed. It's exhausting. Maybe the real fight is the emotional, not the physical. It takes me back in time to a place I don't want to visit. You know -the 'why us?' place where reason and happiness go to die. I hate you so much right now, Cerebral Palsy. Dystonia. Fate. Destiny. The Universe. Whatever it is . I hate you. The whole world is planning their Summer hols and we're just hoping Elin gets at least a good few dystonia free days this year to enable us to actually get her out and about without it being massively traumatic for her, and us . If those days also coincide with some sunshine well then we will feel like we've won the lottery. Woo fecking hoo. I wish with every fibre of my being that someone could find a cure for dystonia, since the arching and the writhing and the constant stiffness is what affects Elins  quality of life so badly, never the fact that she is disabled. We are so fortunate to live in a country where being disabled actually hardly stops you doing anything anymore. But the dystonia will, oh god yes. And did I ever think there was a time I would be sat here wishing my daughter was 'only' disabled? That I find myself wishing to God-knows-who yet again that I f we could cure the dystonia I would happily take the disability, honestly I would, I promise guv. What a sad little wish that is.  It makes my heart pound and my stomach twist with the unfairness of it, the frustration. So I'm digging deep, like I've taught myself how, and I'm riding it out and biting my lip and trying to care enough to root for Murray and attempting to remember the hopeless feeling will ebb away, as it always does. But though tomorrow is and always will be another day, rest assured Cerebral Palsy, I really really hate you so much right now. For everything you stole from all of us. I hate you. 

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2 comments

  1. I have just read your post oh how my heart goes out to you and your daughter. Life is so unfair. People with faith say God only gives us what he knows we can cope with. I'm not so sure.

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  2. The doctor has spoken of the deep brain stimulator (DBS)? I do not know exactly the type of dystonia that is your daughter, but mine has been granted quality of life, I recommend that surgery, we live in Spain.
    Everything goes better, blessings

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