I’ve always measured my pain to others disabilities. I wouldn’t say I was disabled because the government doesn’t considered it that. When I used to be able bodied.
I do feel able bodied when I have what I call a good day. When my mood shifts to mania and my stomach doesn’t hurt and I have little to no physical pain and I clean like crazy, talk to everybody, can hold conversations and feel like “myself.” But now those days are getting few and far in between. Is it an indication that I need to try harder to mitigate my symptoms? I havent been able to because I have duties elsewhere. I take care of beings that can’t take care of themselves. I have no choice. I’m stuck. Doing this makes me happy. What if I can’t do it any longer?
On the days where the pain and the fatigue and the symptoms are too much I can’t function like a normal adult. I’m cleaning today and it’s taking me hours upon hours because I keep having to rest. When on a good day it takes an hour max. Even if I’m cleaning really well an hour and 30 mins. Apart of me feels relieved that soon I will no longer have the added stress of choosing between my health and the health of another.
Another part of me is grieving the days I felt okay. And greiving that as much as I’m okay doing this when I feel okay. I’m not okay when im not okay. And I feel guilty because I feel like I could be giving them better care.
Yesterday I rested because I cleaned and took care of them so well and give them lots of attention. I try to clean every other day. Well today is my clean and caretake day beyond the regular give food and water and check ups and I’m just exhausted. I should be resting. But resting doesn’t help much at all. I did rest. I rested yesterday. But because of what I ate or something triggers a flare in me and all that rest I took doesn’t matter all of a sudden.
Not to mention I feel so fucking alone. No one understands what this is like except for the people who have it. In order to keep any sanity in my life I have to mask my symptoms and I only mask it well if what I have calling a good day.
I have to keep reminding myself that my pain isn’t normal and that I should seek more help. I don’t have health insurance and so all these doctors will do the run around. I only go to the doctors if I think something is really wrong. But it’s all been really wrong for a while now I’ve just lived with it. Every single day for years.
I really thought my stomach was supposed to hurt all the time. Because my body was used to that. It just hurts. And that’s your stasis babes 🤷🏽♀️
I constantly gaslight myself along with the other people doing it to me.
I’m grieving losing so much. Connections I could have had because my memory is bad, my speech is bad, I can’t hold conversations. I have to deal with this new me and people getting confused by me because when I feel okay I act differently then when I’m I’ll. I have to deal with working on healing these other things. I look young and I push through my pain. I have an invincible illness. The kind of thing older people get by societies views. So when I don’t feel great and the one time I snap because I’m in so much fucking pain even I can’t stand it( I have a super high pain threshold) I’m the asshole. On top of being a fat black female just adds another layer medically. Even if I wasn’t fat. Still so much medical ignorance.
When other people see me they tell me to rest. And hope you feel better. Rest doesn’t help as much as you think. I’m only resting because I’m pushing through a tough day where I have to pretend to be able bodied even though I can’t. Some days I can’t even pretend.
I don’t have an official diagnosis of anything and I’m not going to self diagnose. I just know that something is wrong. Because of what I was able to eat, workout and do before energy wize is completely gone. And sometimes I still can do those things if I have a “ better “ day. I forget that I even deal with what I deal with. It’s like my immune system decides when it’s going to shit out. I don’t have a say.
I don’t want to complain all day or talk about my chronic issues or pain. I dread the how are you doing/ feeling question. I answer honestly but then I feel like a downer. I feel like if I don’t mask and say I’m perfectly fine with rainbows and kisses and positivity all the time then I will be a bummer to be around. And it’s true. I would be. I just want to connect. I just want to forget. I just want to enjoy the time I have.
All the doctors have told me so far is just to lose weight and you just have seasonal allergies here’s a pill. I’m just tired. And want to try and get at the issue myself.
I need support. I need a group of people who understand and can point me in the right direction to at least get diagnosed. I’m not pretending I’m okay anymore. I’m not listening to the medical professionals or friends that downplay what I have. Or relate to it when they’re clearly able bodied all the time.
I hope I’m making sense. This is another brain fog ting I have to deal with. And I used to pride myself on writing. And singing. And using big words when I talk. The brain fog might honestly be one of the worst symptoms cause I’m used to the pain. Take care
- Shae 💚
