What It’s Like

Last night I got really tired around 8 or so. By sometime after nine, I was asleep. Woke up at 11:30, and was awake most of the night. Fell asleep again just before daylight, and woke up at 10:30. Not in too much pain, it’s a good thing. Then I stood up. Cannot stand up straight, shuffling instead of walking, panting instead of breathing because something is wrong with my breathing and I don’t know what or why. Do the teeth, litter box, etc., shuffle to kitchen to feed cat, make coffee and toast an English muffin. I can do these things by sort of leaning on, hanging off the counters. Shuffle back to couch, eat muffin, drink coffee. Body is hurting, exhausted, need to lie down. Maybe need to sleep more, I don’t know. I need to unload the dishwasher. I need to wash the dishes in the sink. I need to do something about getting the bathroom clean, getting the floors vacuumed, general tidying up. None of that can happen because I am just not physically capable. This is life with fibromyalgia/chronic fatigue syndrome. There is no control, no power, you are at the mercy of your body. Can’t sleep when I want to, can’t do what I want to do, can’t do what I need to do, can’t, can’t, can’t.

The longer you are ill, the worse it is, because your body just breaks down. Can’t exercise because of exhaustion, so muscles go. Talk about getting out of shape. I know there are people with this who do better, but there are those who have it even worse than I do, as well. Never good to compare your life to anyone else’s. It is sad and depressing and frustrating and miserable, but you just cannot give up. I cannot give up, although I have, to a certain extent. I have really just stopped caring about a lot of things. Mail piled up? So? Is there anything in it I really need to attend to? Do I even look like I care? I have two days a month that are for paying my bills, and I do those, but everything else just kind of goes by the wayside, and I just can’t bring myself to care. The apartment looks like a tip, and it used to bother me, but no more. Nothing I can do about it, so why stress myself, right? I really miss having a person come in and do the things I can’t, but it is not worth the risk right now, so living in a tip it is.

There is a good thing. My cat. Not just because she is cute and fun, but because it causes me to be responsible for another living thing. If it was just me, I think I would be much less with it, but she needs to be fed and have fresh water in a clean dish and the litter box needs to be scooped at least twice a day. I usually just check it every time I go into the bathroom. Stinky litter boxes are no fun for anyone.

But this is life with a chronic, debilitating, painful and exhausting illness. Just thought I’d put that out there. I make a concentrated effort to enjoy what there is to be enjoyed, and to have something to laugh at every day. Look at pretty pictures, listen to music that makes me want to move or just is relaxing for reading, watch a show here and there although I do not watch nearly as much as I used to. I do not miss regular tv even a tiny bit, just really happy to have no-commercial streaming. No soundbites. No orange man. It’s really a good thing.

I am never going to get better. I used to have good periods, then good days, then fewer and fewer good days, until now a good day is one that used to be considered a really bad day. But that is the hand I am dealt, and I can only play it or quit, and I am not a quitter. Keep on keeping on, that’s the best anyone can do. 🙂

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