I know that I should always be thankful for what I have - a roof over my head, parents and friends who care greatly about me. Fantastic doctors. I try daily to distract myself from the pain, from the nausea and exhaustion with meditation, music, art and craft.
But I'm scared. For the last six weeks or so my body has been throwing itself into massive spasms. Like my legs used to do before I had my baclofen pump implanted, but my entire body is involved. All four limbs, my trunk, my neck, my face. I tremor, I shake, I go rigid... and then I 'flop'. Sometimes there's an obvious trigger, like fine motor movements - if I'm sewing or drawing for too long I can feel my hand starting to go into spasm, then my arm, then the corner of my mouth. If I'm lucky it stops there. If I'm not, it doesn't...
But I'm scared. For the last six weeks or so my body has been throwing itself into massive spasms. Like my legs used to do before I had my baclofen pump implanted, but my entire body is involved. All four limbs, my trunk, my neck, my face. I tremor, I shake, I go rigid... and then I 'flop'. Sometimes there's an obvious trigger, like fine motor movements - if I'm sewing or drawing for too long I can feel my hand starting to go into spasm, then my arm, then the corner of my mouth. If I'm lucky it stops there. If I'm not, it doesn't...
At its worst, it feels like it's going to rip my limbs from my body. The photo is a relatively minor spasm of my arm and face - and even there you can see the way my arm is being twisted and my face is pulled.
I'm also vomiting a LOT. I have to have another ECG to check whether or not I can have a med trial for the gastroparesis. The problem is that it can cause a prolonged QT interval - which can in rare cases cause cardiac arrhythmia and death. The other problem is that I already HAVE a prolonged QT interval. Which really means that I shouldn't be taking it at all. But short of a feeding tube, which I really don't want, there aren't really any other options. I'm just about maintaining my weight eating, so it's not crucial, but I'm bloody miserable as I am. Anything I eat, often anything I drink, makes me bloat to the extent that I look eight or nine months pregnant. I get a lot of abdominal pain. I have to compromise on my pain relief, because the opioids especially slow down my stomach - and my GI tract as a whole.
My pain is now almost intractable, and I'm almost totally housebound.