Thinking about the pain– Yeah, thinking about the pain. Planning around the pain. Feeling the pain. Wishing I wasn’t in so much pain. Trying to think Through the pain. Just pain. Pain.
Here is the thing, there isn’t a time when the pain isn’t on my mind in some way or another. I am sitting there and talking to you with a smile and a laugh… thinking this position is really beginning to hurt my knees and, man, my migraines is beginning to work its way up there to that Ahhh zone. I am at work helping a customer and I am thinking… just one hour to lunch and then it is just half a day to home, not much more pain to function through. Man, I hope I don’t make an error. Just think methodically through the pain, it’ll be fine. Focus. There is no moment I am not aware of my body, where it hurts, how much I have to adjust for that, how much I am capable of, if anything. I am aware of my pain level. I am aware of how functional or non-functional I am due to that pain level and therefore the lack of communication skills, prone to errors, aphasia and confusion that will occur. Pain takes up part of my brain to Tolerate it, I get the rest to function with… the more pain, the less I get to function with. We don’t obsessing about it, but we have to adapt to the level of it on a constant level. if I am sitting down and my pain is high with my legs crossed I need to a) cross them the other way b) change positions some other way or c) get up and walk around for a bit. That is in our mind all the time. Need to shift position. Need to stand. Need to take a medication now. Need to just not move now. Need to lay down now.
I am literally always fatigued– Not tired. Fatigued. Like tired times 100 wrapped all over your body and into your very being. Like moving is a momentous effort. Everything seems to waste so much energy that I don’t have. People have a rechargeable battery. They eat and their low battery gets a boost. And off they go doing things. I have a battery in the morning. Sometimes I start off and it is half empty. Sometimes I start and it is at a 1/4. And I have to figure out how I can get all the things I need to do with just that amount because their is no boost. When I am empty I am Empty. I lightly dust the house or clean some counters, or do laundry or clean the bathroom and I am wiped out. When someone asks me to go out or come to a gathering I want to say YES, but I have to think what level of pain will there be and how my battery will I have left when we are there. I can only say maybe, and decide on the moment. Even then it sometimes get so much worse once I am there. We are not lazy, dealing with pain every day is exhausting on the body.
Painsomia-I can’t sleep. I have insomnia from FM. More so though I have painsomnia. My pain is always high at night. I just lay there, me and the pain, in the dark with nothing to distract me from it… and I can’t sleep. The pain is too loud. Too There. I’ll lay there for what seems like eternity and when I look it was just half and hour. I have to get up and do a walkabout and then try again, hoping to get comfortable. And the immense pain covers me again. I think the exhaustion gets you in the end. People tell we should get some sleep. It will help us. We want to. We really do. But pain and sleep do not go along.
Financial instability– This may not be true for everyone, but it seems statistically with chronic pain it affects our bottom line. What we pull in for income. Because eventually we have to make work compromises, especially if our work doesn’t permit work place accommodation. We have to compromise because we can’t do the work but then our finances suffer. Then we go on disability and our income drops substantially. I found for me it just continually goes down and down.
I am never content-I find I am never content with what I can do. I always want more. I want to work full time, even though I can’t. I want a career that I enjoy, but I can’t. I want to do so much more than my body allows that I feel like I am living a half life. But the pain isn’t something I can win. Pushing myself never works and leads to horrific results. So I have to deal with the life I have, but I am never content with it.