Well I'm not exactly out of the crash yet. So I'm laying in bed writing this blog. I guess there are things I could be doing - filling out research funding applications, doing some reading for my upcoming online course....instead I'm doing nothing. I guess along with feeling sick, I have the blahs. My friends Sue and Joe just left this morning for S. Ontario. They were here for two days. It will be mid Sept. when they return to find a place for us all to live. They looked at a few places while they were here, but we didn't decide on anything. I hope we can find a place that will "work" for all of us.
I'm so divided right now. I want to get up, go out and DO something. But I'm not feeling well, so if I do anything slightly "active", I'll end up feeling even worse afterwards. Day 9 of the crash and I'm getting very bored and antsy.
However, Sue, Joe, Teagan (my dog) and I went to Mission Marsh yesterday for a short walk. Teagan fetched sticks. The water is so shallow out there that she did this weird loping/swimming thing that was such good entertainment. I thought I should take advantage of having Sue and Joe here to drive. It was an opportunity to go somewhere I don't typically go on my own. I CAN drive places, it's just that driving sucks the energy from me very quickly (especially when I'm crashed), leaving little energy left to enjoy places once I get there.
And it's not just an energy thing....the less energy I have and the more "crashed" I am, the more fluey or "virusy" and sick I feel.
It was such a beautiful day yesterday and the wind was blowing off the lake. I waded a bit and because it's shallow at Mission Marsh, the water was actually pretty warm for Lake Superior.
We didn't walk far (maybe a block and 1/2 worth on flat), but by the time we made it home, I was feeling pretty ill. Then I had to lay in bed feeling like "death" for a while.
Everything with this illness is relative, though. Some people with M.E./CFS are sick enough that they can't even get out of bed. For the severely disabled it takes too much energy to talk, eat solid food, read, walk or even stand.....
At my very worst I had trouble getting from the bed to the couch; I couldn't shower (because of not having the strength to stand in the shower). Still, at my worst (which was several years ago now) I wasn't as sick as some people are for years at a time. So I can count my blessings that I can walk a block, do an errand a day, read, watch TV. Even if I am mostly housebound right now (I can probably do one short errand of a/b half an hour right now without making myself sicker), I KNOW it could be a lot worse.
For me, a crash means I feel a lot sicker than my "normal" and my functioning significantly decreases. For example, when my parents were here I did some 1/2 day trips (nothing strenuous) and could come home and rest and be OK after a day or so. Right now I really can't leave the house for more than 1/2 an hour or less a day without making myself significantly worse. For a person with severe M.E./CFS, my level of functioning while "crashed" would be a dream. On the other hand, a "well" person might spend a day in my body and go insane from feeling this sick and being so restricted activity-wise.
It's all relative.
You're right. It is all relative. I went from housebound for two years to working full time. Even so, existing anywhere in the ME/CFS spectrum is no way to live. I hope you start feeling better soon.
ReplyDeleteHere's hoping for a cure!
Here's hoping for a cure yes! But I'd even love a treatment that would help me improve...or to know the biologic cause of this $%^$&$&^%$^$%$^% illness, or to have acknowldegement and support from the public or health practitioners of how real and disabiling this is....any of those would be a start.
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