I know this comic has already been posted on lemmy. But it’s the only way that I feel captures my feeling, it’s like I live on an unspecified timer, everyday, after that I go back to the can.
There’s the constant pain, the lack of sleep and/or quality of sleep, waking up everyday like you’ve been run over by a train.
Then there’s the extra sensitivity, and the “electricity”, every time I sweat I feel an electric shock in my body. At many points, it feels like an active electric current is being run through my body, like I’m strapped to one of them electric execution chairs.
Then there are the constant brain fog/headaches, no matter what I seem to do, half of my brain is preoccupied with pain in random areas. My brain is like “Hey wassup, I know you’re trying to focus, or sleep, but your left leg is in a g o n y, because no reason really, maybe you moved too much. And so you have exceeded your uhhh free trial of leg for today.”
Depression comes in play too, either because I don’t go out much because of the pain, or because of the lack of sleep. And then depression fuels anxiety, and they fuel each other, and we have kick started our “mental doom engine.”
Then there’s the sleep. I have school coming up, it is absolutely necessary that I stick to a schedule, except that won’t happen. Because the only way for me to fall asleep, is to be at that point when you’re so sleep deprived that you can’t keep your eyes open. I have tried at many points to use this my advantage, but it seems like this point is almost always at 5 or 6 AM.
I have abandoned traditional art, and almost anything that involves the use of arms. I can type on the keyboard pretty comfortably because it requires only my wrists and fingers, but even that starts to hurt after a while.
And lastly, it is almost treated as an invisible disability. “Your limbs don’t seem to be broken/swelling”, “You’re not using crutches”, “You’re not on a wheelchair”, and “Fibro my what?”. I have been using sticks/staves/brooms in many situations to get up and move, and I use whatever object I can grab and get up with.
Since I grunt all the time, move slowly, use long objects all the time, I have always joked that I feel like an old person. As I’m writing this, my old person knee is acting up for no reason whatsoever, it just likes to be silly at times (night).
Tl;Dr: The comic I posted, I guess.
Thank you for reading.
EDIT
The good ending. All of the responses were to my surprise, overwhelmingly positive! I thank everyone who has commented with their own insights, I learned a lot, remembered a lot, and discovered a lot of things that would help me manage my pain. Thank you all, I wish you all the best of luck
I’ve been on something slightly resembling your journey. A cane of a correct height was a huge upgrade from the improvised mobility aids I’d been working with.
Much more beneficial than I initially expected. More movements. Bracing against the ground while crouched using it like a rifle buttstock, standing up slowly by gripping the curve, hooking on to furniture or my legs to sit up, dragging heavy things with the hook, resting my chin on it when holding my head up takes effort.
Believe me, you’re gonna want those moves. And you get more Leg reserves if you divert some Leg over to Stick. 🦾
Holy shit this sounds cool as fuck.
You really sold me on this. I want in. NOW
Also wdym by correct height? What criteria should I use to choose one?
I left out the best part, doing the ground bracing at weird angles makes it EASIER FOR ME TO PET A CAT!
Anyway, an adjustable cane is best. To my understanding, its support should be at about the level of your wrist when you stand up straight if that’s something you can do. I’ve heard of cool wheelchair accessories that also connect to the spring-loaded peg and hole height adjuster on standardized canes.
I’m very far from an expert, and can’t give medical advice, but it sounds like you might want to ask a healthcare provider if you’d want a cane that can affix an arm brace. Knowing whether you’d want that style, or the movements of bracing on a traditional cane, would be specific to your body.
There are options for different supports and tips to fit you best, but the classic is classic for a reason. The canes that fold out into a seat are rad as hell, though, and walkers and rollators have plenty to recommend them if they’re the right tool for somebody.
If I was telling someone where to go to try out some options in the US, I would direct them to a durable medical equipment store or a pharmacy specialized in that. Another option might be a local senior center, which often have loaner equipment they might let you try. Hopefully there are useful options like these where you’re located.
I am so delighted this helps, and hopeful for more helpful info others might have. Excited for ya!
This reply has been a huge help. I thank you yet again :)
Now we’re talking! Years ago I was depressed, so by googling “help me please” I found this website http://helpmeplease.com/ and it was the best thing I ever encountered!
Here is the image on the front page!
Sorry I got off track, point is there has been a sentence that had stuck out with me from that website, “Rest Anywhere” with a photo of a person laying down on a boulder! Ever since then I have been doing exactly that, and hearing that there is a cane that folds into a chair, is extremely helpful :D
Oh, one more moveset that might be huge for fibromyalgia: on a standard cane, the padded handle, rubber bottom tip, hard top tip, and cold rollable metal are all useful for massaging and pounding out various aches and pains. Holding it behind me in my elbows and using it to twist and pop my back is so damn therapeutic.