I had a really good 4 days of pain relief. The pain crept back up so quickly and I think the change in the barometric pressure added to it again.
My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.
This illness continues to suck the life out of me. It's not just the pain, no energy at all.
I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.
Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.
My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.
They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.
Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.
I worry over it, but what can a girl do?
I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.
Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.
Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.
I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.
I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.
There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.
Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.
Move it or lose it.
Until next time
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2 comments:
I've read much of your CPRS site, including your own story, which moved me a lot. You write a lot more coherently now, which I would take to mean that you're handling things better. It was actually the frenetic and scattered nature of your personal story that made it more powerful although a bit hard to read. I checked out much of the rest of the site before reading it, and was astounded by the clean and logical nature of it versus your own story.
My hats off to you. You've survived at least two conditions that I know of (CRPS and fibromyalgia), either one of which can make life hell. I really don't know if I could have done it. Maybe I'll get to find out, at least in regard to one of them. Like you, I've got a spouse who will stand by me. Indeed, she might be the only reason I keep going, which would make her loyalty a mixed blessing.
I personally am near panic because I've made three phone calls and delivered one letter to my internist's office trying to get the damn bone scan arranged. When he FINALLY sends the paperwork, I'll have to wait for the appt and then wait to see whatever specialist I'm sent to. Meanwhile, the clock is ticking toward the day when this could be permanent.
I'm sorry I didn't read this post before I responded. I actually didn't notice that it was one I hadn't responded to. My "Dashboard" said you hadn't posted in two weeks, and I felt sure I had been here since then.
If I had to choose between not walking and living in the agony that you're in, I would take not walking in a minute, and I say this as an active person. You can be in a wheelchair and live a long life, but a long life would seem doubtful in your current situation. Besides, you expressed the thought that having the nerves severed "might" mean not walking again, implying that it's possible that you would.
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