It's like there's nothing in the tank. The "car" won't start. I get out of bed to do something and last less than a minute. I try lifting my arms to do something like brush my teeth, it's like every cell in my body is poisoned and dead, nothing to give.
How do you participate in life when you can't find the strength and energy to stand up for more than a few seconds? When even sitting up is beyond exhausting, the only thing going through my head when I'm sitting is "I need to lay down, I need to lay down, I need to lay down". My chest is so heavy and sore and infected it aches every time I breathe, swallow, talk.
This is not laziness people, this is not in the least bit about motivation, this is not being down or sad, this is about a body that does not, cannot seem to produce energy. There are no words to describe this. Perhaps the fatigue and exhaustion of mono, or influenza...nothing else comes close.
I'm crashed. I did too much on the weekend. I did an outing with my dad on Saturday, we had a Thanksgiving meal here on Sunday (and I cooked a fair bit of it). Sometimes I can go along doing some little things, some living things, but then the repercussions come: I'm crashed, which means broken. I live in a broken body.
I know if I came down with a terminal illness right now I'd say "I'm done". I'd give into it. I had 31 good years, followed by 14 sick ones. Not that there hasn't been good things in these last 14 years, but I'm so exhausted from living in this sick body. Sometimes it really isn't living at all. It's watching the shadows on the wall, laying in bed or on the couch for hours and hours alone, too weak and sick and exhausted to do anything else. I'm tired of it...I don't want to do it for 14 more years. I don't want to feel this ill for even one more year.
Given it was Thanksgiving yesterday I'll say this, I have things to be thankful for. I am very thankful I have my roommate/friend S. in my life. I am so very thankful I have my dog Teagan who keeps me company almost all of the time, providing companionship and entertainment. I'm thankful for all my many friends I've had throughout the years. I'm (sometimes) thankful for having my father nearby, where I can help him out without a huge amount of strain on my health (although sometimes there is, like last week). I'm thankful I have a home to live in, an awesome backyard to tinker in or sit out in when the weather and my health cooperate.
On a related note, if you haven't seen any reporting about this study that showed people with M.E./CFS have a metabolic signature similar to invertebrates in a hibernation, you should take a look. "What?! our metabolism is malfunctioning? Could you find anyone with M.E. who'd be surprised?": https://www.sciencedaily.com/releases/2016/08/160829163253.htm
You write so well. Thanks for all your blog posts. Similar to what you wrote about coming down with a terminal illness I was reading about the hurricane flooding in the south and thought to myself that I'd never survive such a disruption. I can't manage without my favorite, meaning less pain, chairs and mattress and carpet to cushion my painful feet. I could never get in a boat or stand on our roof. I'm so dependent on my routine. and then endless tv when I can't do anything else. I too have much to be thankful for but when I watch people simply walking around, travelling, walking up steps or living a full day it's pretty hard to go thru my thankful list at those moments. Have to admit then I go to my Jealous list !!! from Leah
ReplyDeleteHi Upnorth, I thought I'd check on your blog and haven't seen a new post for awhile, sure hope you are gathering steam, but I know what this blasted disease is like. 14 years is a long time, so difficult to keep our spirits up when there's little we can do and have to calculate and weigh our every move in life. from Leah
ReplyDeleteThanks Leah, I sometimes wonder if anyone would notice if I disappeared from the world. Really touched.
DeleteHi Upnorth, I just send a thinking of you post. I somehow missed the 'prove you are not a robot part.' Well, maybe it will come up later. So hard living a life where we have to calculate and weigh our every move - that's what I said I think. I hadn't seen a recent post so was concerned about you. from Leah
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