Disabled Artist And Spoonie

[blue-autistic]

You don't need to "earn" rest in the exact same way you don't need to "earn" food or water. Your body is telling you it needs a break, and it's okay to listen to the things your body needs.

[nospoonsbutknives]

Well I got to play Diablo 4 with some friends, it was awesome, and now I have nerve pain going off randomly. Probably because I was sitting weird trying to balance the controller and my phone. Why can’t we have all the nice things😭😂

[wilwheaton]

(via Reddit - https://i.redd.it/7zs221ajej9b1.jpg)

[mentallyandchronicallyoverit]

Chronic illness has me like: Phew, better go lay down and take a break from all of this sitting I've been doing.

[nospoonsbutknives]

And so it begins … I’ve gotten the first lupron-depo shot and taken the add-back. Kinda terrifying to know that it may help, or it may not, and the only way to know is to try. But I can only walk with a cane and use a wheelchair so I’m willing to try almost anything. If this helps, I’ll be talking to my surgeon about a hysterectomy, because my current pain levels are just soul crushing. Fingers crossed haha

[dashing-hyphen]

Me: *goes out steppin' with my cane and my doggo*

My hip: *also goes out*

[nospoonsbutknives]

I’m not going to lie down on the doctor’s office floor. I’m not going to lie down on the doctor’s office floor. Maybe I should lie down on the floor😂

[ripeteeth]

i simply need everyone to understand that i am tired all of the time. literally at all moments. if i ever go somewhere and do something, it is not because i am somehow full of energy, but instead that i have carefully stored up all of my little bits of energy like a dragon collecting jewels, and am now vaporizing them all at once

[spoonie-isms]

Spoonie: My appointment with the specialist is months from now.

Non-Spoonie: Why are you waiting so long to go?

Spoonie: …No, no. That’s the soonest they could get me in.

Non-Spoonie: Can’t you just go somewhere else?

Spoonie: -.-

[nospoonsbutknives]

Well, they actually found something. A tiny spot of endo which my surgeon excised. Everything else looked good, no adhesions, so she’s not convinced the endometriosis is causing all my pain, but just hearing “yeah we did find endo” was such a relief. I have endometriosis.

Now we’re going to do the lupron shot and induce menopause to see if that makes a difference. I also asked … if not endo what could it be? And I think one of the only things left (if we’re staying away from super rare stuff haha) is fibromyalgia. So we can still pursue that … but I know you know, if you’re a spoonie, just how exhausting that sounds.

So … we have an answer, if not THE answer. I know people can have endo without adhesions/visible markers, and that having stage 1 doesn’t mean you’re not in excruciating pain, so I haven’t ruled out endo being responsible for all of it. And my surgeon is willing to yeet the uterus if we think it’ll help the pain, which I’m grateful for. She just wants to make sure it’d help.

Now to look up everything endometriosis again😂

[newhologram]

Anyone else get physically sick during ovulation in addition to the intense pain? It keeps confusing me because I’ll think it’s some other flare up but then I check my tracker and I’m like aw, shit. Egg splode. No wonder.

[nospoonsbutknives]

Since my diagnostic laparoscopy was minimal I’m returning to my workouts this week … the biggest recommendation after the surgery is walking but walking is hard for me, and I’ve felt it takes more than it gives (although I enjoy walking so we still go for short ones). What does help is weightlifting and Pilates … both set off those happy post-workout endorphins that help with pain management. I have to get creative with some movements (I was told not to do deadlifts, for instance) and I can’t push through pain or tiredness, so I’ll switch to an easier movement or do some stretches (I follow YouTube videos for the structure) until I get to a different movement I can do.

Sometimes I’ll throw yin yoga in there as well but I have to be careful, various twists and positions might not hurt in the moment but they absolutely will later. I was a yoga teacher, I know😉 (that’s always fun to pull out when people say “have you tried yoga”) Basically a lot of experimenting to find what works for my condition (not that I have a diagnosis yet).

Anyway I did a light beginner weight workout and it was amazing. Pre-pain I was always active, running marathons, playing soccer, hiking … so having a small part of that back is an incredible mental boost. But it got me thinking how we’re always told, by doctors and well meaning people, to make sure we move! Do what we can! Don’t lose mobility! But it’s just not that simple. I know there are some conditions where any exercise would make everything worse; I find walking draining and not worth the trade off in terms of “working out”, etc etc. And if I hadn’t been active when the pain hit, I don’t know that I would’ve had spoons enough to figure out what worked and what didn’t.

So yeah, it’s a crapshoot. We only have so many spoons, and sometimes exercise just isn’t on the table because other things take priority. But I’m glad I had a spoon today for the workout.

[the-neurodivergent-cooperative]

I love talking about neurodivergency like it's some superstitious shit. Like "Why are you so focused on this hyperspecific side character from this piece of media?" "I don't know if I don't the autism gods will be mad at me and give me bad luck". That's usually what it feels like having neurodivergencies or mental health issues. You just have to do whatever your brain tells you or else. "Why can't you hear about this specific topic?" "I'll be cursed by the trauma gods." "Why can't you do your homework?" "I don't know the winds aren't blowing correctly today."

[nospoonsbutknives]

Had a young child run up to me at our towns pride concert and tell me my wheelchair was pretty (it’s hot pink). Made my evening♥️

[nospoonsbutknives]

The clash between “I am so bored, I need to do SOMETHING” and “I am so tired, so very very tired I can’t do ANYTHING”😂

[flowercrowncrip]

Asking for help when you need it is a strength

[disabledprincesses]

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For all my over-heating spoonies out there:

While doing chores/moving around, if you start to get really warm, put ice packs in your pockets, 10/10

Drink lots of ice water, but not all at once, your body might freak a little and go nauseous

Have a large amount of tank tops in various colors, when you go out and have to look a bit more formal, use a cardigan/very thin jacket so you always have the option to take it off

Spray bottles on mist form <3

Sometimes resting, or laying down, helps to cool off cause you're not using energy

Keep your bare feet on the cool tile/wood/etc. as often as possible

Bowl of ice in front of a fan works weirdly well

Popsicles, but make sure they're not high in sugar/dairy/etc. because those can make it worse

I know it would seem like tiny tight clothes would be best, but make sure your clothes aren't tight, you don't have to wear long flowing capes and gowns but having shorts that are cotton/loose are always much better.

The backs of your arms (the upper half) your feet, and your knees are often colder than the rest of your body, utilize that

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