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Whose doctors didnt think they were bad enough for their mobility aid, so they had to watch videos and practice on their own how to use it

Whose had to go through painful trial and error to try to figure out what they can and cant eat and how to relieve their stomach pain

To those who can’t afford to go to the doctors to figure out whats wrong or how to fix it, so you rely on what you know, looking for info in the spoonie tags, knowing its not going to be perfect or even correct information youll always fine, but the alternative is ignoring it

To those whove had to make, actually create or build accomodations for themselves like ramps and DIY wheelchair stuff

You’re still a valid disabled person.

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Very tired and fighting through flashbacks, and of course my chronic illness is kicking my ass.

I have many days like this where I wish I could just hunker down and rest until the flashbacks go away and the feelings of panic and depression just leave.

Sadly, I work. Even when there are days where my capacity to work is nonexistent, I am obliged to. I do luckily have paid sick leave, but I haven’t seen a therapist or psychiatrist in like over 100 some days… Let’s just say a lot of life shit happened during that period of time. I’m just glad that I do see somebody again on the 9th. I’m just tired… with Chronic illness combined with psychiatric conditions, chronic fatigue is at a major high at the moment.

It doesn’t matter if I sleep for 10 hours or more, I’m still fatigued. Combine that with panic attacks due to flashbacks and it’s 3x as worse.

You ever just wish you could rip out the parts of your body that’s wrong with you and like I don’t know… Get new ones??

But shiiittt… That’s like 1/3 of my body gone 😆

My heart, my tender points that hurt all the fucking time, my brain, all of my joints…

It’s not going to be a good work day… wish me luck, Spoonie family…

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I wish I was a well oiled machine, at least then my joints wouldn’t always be creaking.

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My fibro suddenly flared up without warning yesterday so I tried to sleep with one of my trusty lidocaine patches on, but it didn’t help at all. I keep gently stretching, taking ultra hot showers and sleeping well, which all usually helps, but no dice. And what’s worse is I don’t even have a TENS unit anymore. I don’t wanna worry too much about it but I think this flare’s gonna last a while. I keep having to lay down and rest. I might just have to take it even easier than usual for a couple days and ride it out. I can’t risk triggering a little attack at the wrong moment when I’ll definitely get caught lying on the floor by a family member and cause some kinda worried panic. Especially since I don’t wanna have to go out just for epsom salts to reduce any inflammation I might be missing.

Interestingly, the fibro fog isn’t really there this time, just the everything-hurts-so-much-ouch. Mentally speaking I feel pretty fresh and bright, comparatively. Remembering to take my supplements was such a good idea. There’s stuff I wanna do but my body can’t cooperate. Even sitting at my computer for a long period of time is enough to drive me to teary-eyed pain. Which sucks. I wanted to get a lot of writing done!!

I know a couple fellow fibrowarriors follow me on here, and a lot of other chronically ill people, especially those living with autoimmune disorders (fibro’s beloved cousins) and lemme just say… Yeah!!!! This shit sucks!!!! But we still gotta keep trucking!!!! Don’t give into the despair!! Get off the sofa sometimes!! If you think you’re taking more oxy, codeine, dil or tram than usual, cut that shit out and use your TENS instead!! Or just keep it to a healthy amount of Tylenol like a good kid!! Remember to get some sun!! Like Cousin Oskaar says!! And survive, motherfuckers!!!! We’re not gonna go down like this!!!! Hell no!!!!!!! Chronic pain can suck it!!!!

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My partner is trying to convince me that I am high-risk because I have fibromyalgia (even though that does not compromise my immune system) and a bit of a reduced lung capacity (diaphragms pushing on one of them because of a surgery I had as a newborn) that causes shortness of breath while doing strenuous physical activity..and I probably can’t breathe as deeply as other people, idk, it’s never been a huge problem. It gave me some leeway in school with running and what not, but I don’t think that means I’m going to die from COVID-19. My lungs are healthy, just…one of them is a bit squished. I don’t get sick a lot, I never get the flu, I bounce back from colds and such quickly. I’ve never had lung problems other than what I just described.

The doctors around here are dumbasses so they have no idea if I’m actually high-risk, so I can’t really keep bothering them and my partner keeps badgering me to get a signed document saying I AM high-risk so he can get sick pay. I’m getting tired of this.

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I have been getting more and more fatigued but still can’t sleep. It is so draining being so beyond exhausted but laying in bed with nothing to focus on but the pain.

And holy shit the pain is bad right now.

It feels like the muscles in my legs are being burned on hot coals, nerves are firing in my back and through my face. Its excruciating.

I have taken my painkillers but they are not doing a thing.

I am sick of being so fatigued, I am sick of pain, I am sick of sickness.

Its times like this that I start pitying myself, not a positive trait. Why me? Did I do something to end up this way? What if this never stops? What if this is my life?

Someone please take it away, even for a day?

I have genuinely forgotton what being in a healthy body feels like.

I dont remember days without pain, I dont remember what a good nights sleep is, I dont remember what it feels like to be active and energetic. I have memories, but I can no longer remember what it is like to be that person.

I just want the pain to stop. Just one day, one hour, just so I remember what it feels like to be more than this.

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What started as an EDNOS relapse either bled into or triggered what I’m assuming is a fibromyalgia flare, because now I just… cannot eat solid food. My body has steadily been rejecting food for the past week, and for the past three days, I haven’t been able to keep anything down except crackers, soup, and Ensure down in small goes. I can kind of do other things if I time a dose of Zofran well, but it still requires a lot of willpower and nausea.

Which is all great, because nearby stores are selling out all the things I can eat immediately, and I can’t online order things like graham crackers, ramen, or nutritional shakes because 1. I can’t use EBT online, and 2. they all now require in-store purchase anyways to discourage hoarding. It’s first come, first serve, and I cannot even walk out of the house to try and get in line for these things.

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Dear everyone that gives abled people shit for complaining when they get sick:

STOP. Just because we spoonies deal with different things doesn’t mean that isn’t a bad situation and feeling for them. As you have probably learned throughout your journey, pain is relative. Not everyone has to deal with the same things. Someone else’s “worst” may not be the same as yours, but that gives you absolutely no right to disregard their feelings.

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