#spoonie talk

[hysteric-machine]

One of the worst things with chronic pain is that you get so used to suffering all the time that it feels weird and scary when suddenly you don't suffer this much or at all. And at the very same time, when the pain is back again, you get a very deep feeling of injustice and fear. You never get used to it. Ever. Because it is unfair and not your fault. You will wonder if you did anything to cause the pain to flare up? And while there can be variables, most of the time, it's just completely out of your control. Even if you did something causing a flare up, can anyone blame you for wanting to live a full filling life ? You didn't do anything wrong.

[citygirlonyou]

Small Accomplishments

that are actually not that small. I did my dishes today. MDD is a terrible disease. I'm glad for days like today.

[chronic-this]

When you have a conversation with yourself at home about how little spoons you have that day and it comes out as incoherent mumble jumble; as if you made up your own language and your cat is the only one home to witness your madness. 

[smilepilled]

new idea!!! give urself a pat in the back every time u notice youve dealt with something nicely. the pat in the back can be anything you want, really. a tasty treat, a lil something, a nice break... just acknowledging your W's, really! 🪲🤍

[hysteric-machine]

Giving some news :

- Currently juggling with my antidepressants dosage, too much calms me a lot and helps with overbearing anxiety that gets my pain worse BUT has a lot of downsides such as being completely dehydrated (and I can't cut my other medecines that have this side effect too, it's already optimised on this part), and my nightmares are worse and longer, plus I am completely fatigued 24/7. So yeah, not paralysed because of anxiety but because I am sleeping all the time lol.

So I am getting back to my last dosage and it sucks because anxiety is terrible. Can't wait to try EMDR with my new psychiatrist 😭

- Remember my post about painkillers / "just in case" medication? Well my doc doesn't like what I am taking for pain management because it's addictive and it's excitement inducing which is not recommended with anxiety. And it's not conventional (it's a medicine that's supposed to be injected that I take on a sugar to potentialize the effects of the paracetamol+caffeine that are my go to painkillers). So he wants me to try Morphine even though I am highly constipated and it is not at all recommended for me, because there is a small chance I might tolerate it ?? I said ok to try it out but I am scared af. Constipation and bowel problems in my case are severe, so I might really get a rough time in this experiment. And I don't get how it's any better because Morphine is addictive too ? It's more conventional. Okay. Not excitement inducing. Okay. But risky. So I didn't try it out yet AND felt bad and did not take my regular pain killers these days... Even though he said he will not cut them off and force me out of them.

So, this morning I took my Nephopam + paracetamol& caffeine again, because pain was too much. And yeah, this shit works wonders. It INSTANTLY cuts off the pain (or at least puts it under a bubble for while). I do feel on edge, a little trembling (especially if I have not eaten), but I can do things and not be stuck in bed and it has no price.

So yeah. Will probably try Morphine to be able to tell my doc how it works for me... But still not really convinced it's my solution.

That's it for now, I might be sharing my spoonie journey here sometimes. Don't hesitate to come to me and have a chat if you want to or need help about anything ✨

[alien-squids]

I'm really thinking about saving up to buy a wheelchair, though I don't know what that'll mean about my current job and if they'll work around my accommodations without a doctor's approval.

I was diagnosed with Fibromyalgia last year but my doctor isn't accepting me wanting to use a wheelchair, saying I'll get worse if I don't move, but here's the thing, my fatigue is so bad when constantly moving around and standing otherwise that I still want to get a wheelchair, especially when I am constantly standing and moving around at my work.

If I get a wheelchair, most of my fatigue, dizziness, and even pain will go down. I have used wheelchairs when spending all day at museums before and it's really helped a lot. I just wished my doctor would acknowledge this and give me actual accommodations for work.

My symptoms aren't going anywhere, l tried changing my lifestyle multiple times and I still don't have better results. If I could, I would be abled bodied, I would be walking around and doing all sorts of things, but with how my chronic illness is, all I'm trying to do is find all the things that would benefit me and my ability to perform every day activities in my life.

I want as much normalcy as possible, I hate being chronically ill and I hate how I can't just rely on myself to help push myself through the day.

[yoikami]

My dog and I took some weight 😳 we need to go for walks in the forest some more. It's the best place for walks and I can gather some good stuff and reconnect with nature. Not easy with a hyperactive pup.

Biggest issue: risk of tripping and hurting myself + it's very tiring and painful to walk in real nature. My mom will be here with me anyway!!

Another simpler thing I could do at home: soft stretching! A work out that doesn't require exhaustion but rather stretching until it's slightly painful for each joints.

[anarchohellenism]

Friend came up and tried cracking jokes and he was like "don't let me forget to buy you candy canes" and I'm like. Hey buddy, I'm 17 years old and have to use a cane. Nothing can bring me down, you're gonna have to try harder. "Shit. You're right. " Eventually he was like "what's even wrong? " and I'm like idk. So he goes "your body is self destructing" and like yeah big fucking mood. Then he says "they're gonna name a disease after you" and BIG FUCKING MOOD