Wednesday, 27 August 2014
Pride comes before a fall, I spoke too soon, don't jinx it etc etc. After me waxing lyrical about the best holiday ever Elin's not having a very good final week. It started on Sunday- the extra Dystonia -and arrived faster than Dorothy's tornado. One minute she was brilliant and the next she was stiff, wide-eyed and twitching. We hoped she would sleep it off but she's not really improved since then. She has no temperature, no obvious gastro/tummy issues and nothing I can see that may be bothering her. By late afternoon each day she is so dystonic that almost any position doesn't seem to be helping. We administered her 'rescue meds' today for the first time in weeks and weeks. Though she is still responsive and (at least until the end of the day when she is tired) smiling and laughing she is most definitely not herself. Changing her position continually is exhausting for her and for us too- she's a pretty chunky monkey now! I absolutely hate Dystonia and the way it affects Elin. It's like she is trapped inside her own body and her body is betraying her with it's convulses and shaking. It rips away her quality of life instantaneously, she can't focus on anything at all and sitting in a chair is absolutely impossible. If I'm being honest the worst thing for me is that she actually looks frightened, like she doesn't understand what's happening to her. Even though I know Dystonia is not actually physically harmful to her I would give anything to take this from her. Nobody who has no experience of this will ever know what it is like to watch your child fight against the constraints of what the brain is telling their little body to do. I know she will rally soon (we've been here many times before) and I know that many children have to go through a lot worse, even. But I can't force myself to be consoled by that because I don't want to count my blessings that she's not going through anything worse. I don't want her to be going through anything at all. I think she's been through enough :-(
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