I am very, very sorry if any of these flags are incorrect or if your identity or flag has accidentally been forgotten
Here’s something interesting about chronic pain. Sometimes I don’t actually realise I’m in pain, instead it manifests differently, like I’ll become very upset suddenly, or feel nauseous, or get restless leg sensations through my whole body(often the left side)..
..and that my friends is what psychosomatic means! It’s when your body realises just pain doesn’t get your attention anymore, so it manifests in different ways to tell you something is wrong. Yes, technically it’s in your head, because your head is telling you something is wrong with your body.
Anyway I just started crying out of the blue so I laid down and now it’s turned into my usual pain, because I knew something was up. Weird stuff.
Here is your regular reminder not to go to a chiropractor if you have eds, especially if you have spine issues. They can easily make spinal instability worse with adjustments. I know it’s tempting because they say they can put you back together but I’ve been told repeatedly by eds knowledgeable neurosurgeons not to go near them.
It really sucks when you keep having to calibrate a new normal. You adjust for disability and then the nature of it changes and you adjust, you get another diagnosis, you adjust, you just get worse, you adjust. All the while chipping away at what makes life meangful and joyful. :/
My back muscles feel like they’re going to claw their way out of my back. Days like this make me want to quit physical therapy tbh. I would never but I guess I’m going to anyway since I’m running out of visits. I just want some relief.
(old picture of them attempting to run for it for reference)
i think what a lot of able-bodied people don’t get is that sometimes, when we complain about being sick and in pain or vent about a frustrating situation, we don’t want advice or suggestions - we just want them to listen. we don’t want to be told about another miracle cure or to be told what to do by someone who isn’t even disabled. we just want a friendly listening ear. sometimes, the best thing you can do for a disabled friend or family member is to listen to them and show them sympathy
Having one of those days where I’m in too much pain to move but my brain doesn’t want me to sit still.
You’re not alone 💕
So I know that being disabled isn’t a bad thing and it’s not something to be pitied but yknow sometimes I’m fucking angry.
Fuck, I used to do so much. I was really sporty. I was a fantastic swimmer, amazing at ballet, a beast at gymnastics, brilliant at cross country. I loved to run and run and dance and ice skate. I would walk for miles just for the sheer fun of it.
Now I can barely walk down the street. I’m so fucking angry and I’m grieving. My whole life was set out in front of me and now I can barely make it out of bed. There’s days where I just stay in bed and feel sorry for myself. I lost friendships because of how isolating disability is.
I know this isn’t the end of my life and I know this doesn’t make me any less of a person. But sometimes it feels as though my body has betrayed me. Sometimes I feel as though I’m useless if I can’t do what I used to do. I pity myself.
I know this is because of an unkind society that places value on people by how much they can work. But god I’m so angry and frustrated and sad. It’s so confusing, simultaneously knowing that actually you’re brilliant and strong and no less important than ableds and just feeling complete despair and grief. Grief for a life you knew or never can have.
Gentle reminder that the human eye is naturally drawn by noise and movement, so the next time you walk into a crowd or a bit late into a lecture or something like that, they’re not staring at you or judging; it’s just an instinctive reaction that has nothing to do with you doing anything wrong.
This really helps my anxiety.
It’s literally a threat assessment/food gathering instinct. The steps your brain is doing, subconsciously.
-Check to see if movement is lion in grass.
-Also check to see if possible game animal and edible.
-No it’s just Dave getting into lecture hall a few minutes late.
All disabled people are worthy of love and care and that includes you.
Never let people make you believe you’re are burden.
The only burden is that of a system indifferent to suffering and unaccommodating to its people.
You are not the problem.
No one talks about how dangerous chronic pain can be when it comes to illness. You see, I have constant pelvic pain, and once had a UTI for weeks without knowing. How? My only symptom was pelvic pain, which I already have. I thought I was having a flare up, so I just ignored it. We’re so used to the pain we have that we don’t notice new pain trying to tell us that something’s wrong. Because our bodies are always trying to tell us that something’s wrong. And we learn to live with it and sometimes ignore it.
Saw my obgyn today and apparently I probably have yet another ovarian cyst but it’s fine. And I have a second breast tumor but she’s not for sure because my breast tissue is really dense. But that’s probably fine too. My body makes so many damn cysts and tumors it’s bonkers.
I still can’t believe they found another tumor and I probably have another cyst. My muscle spasms have been beastly and I’ve had a huge uptick in tethered cord symptoms this week. I’ve got too many health issues, no doctor willing to treat me right now, I’m losing coverage to the only thing that does help, and some serious medical burnout from the two spine surgeries. I’m cranky and overwhelmed.
Your disability does not preclude you from participating in academia. You are not less academic because you have to learn differently, or in a way not considered “aesthetic.” Academia should be something you pursue for yourself, so don’t let other people make you feel less than.
Honestly, about to cry for this post.
There's WHAT fetishists? I just learned yesterday that there are armpit fetishists and now there's neckbraces? What is wrong with people
Oh yeah. Surprise! Some like neckbraces specifically but a lot just like braces in general. A few months ago they stole my pictures for their websites without my permission. Then called me a slut when I asked for them to be taken down. Quality people clearly. Fetishes are fine done consensually but so far all I’ve seen is them stealing pictures from chronically ill women which is not okay.
Thanks for coming to my Ted Talk.
Found more neckbrace fetishists following my Instagram. I seriously cannot get rid of them. I block one page and three more pop up. I stopped posting anything in my neckbrace months ago. Wtf.
- Person-first language (”people with autism”) The autistic community are very vocal about preferring identity-first language (”autistic people”) over person-first language (”people with autism”) so use of person-first language in an autism resource shows a lack of contact with the autistic community/an unwillingness to listen to autistic people.
- Mentions of a supposed cure for autism. There is no cure for autism and many of the proposed “cures” are both dangerous and abusive. Resources and organisations who try to sell you a cure are either knowingly scamming you or very misinformed about the reality of autism.
- Advocacy for finding a cure for autism. The majority of the autistic community don’t want a cure for their autism - they want society to change so that autistic people can be accepted, respected and included as they are. Advocacy for finding a cure for autism shows a lack of contact with the autistic community/an unwillingness to listen to autistic people.
- Functioning labels. Functioning labels (“severe autism” vs “mild autism”/”high-functioning” vs “low-functioning”) are at best useless and at worst harmful and the autistic community doesn’t support the use of them. Use of functioning labels in an autism resources shows a lack of contact with the autistic community and a lacking understanding of autism.
- Autism Speaks. Autism Speaks is a very harmful organization which isn’t supported by the autistic community. Positive references to Autism Speaks/connections with Autism Speaks shows a lack of contact with the autistic community and an unwillingness to listen to autistic people.
- ABA. ABA (”Applied Behavior Analysis”) is an abusive therapy which isn’t supported by the autistic community. Positive references to ABA shows a lack of contact with the autistic community and an unwillingness to listen to autistic people.
- Claims that vaccines cause autism. Vaccines don’t cause autism, this has been proved over and over by various independent studies. Claims that vaccines cause autism shows a lacking understanding of science/a lack of scientific objectivity.
Adding onto this a little: if they describe an autistic child as “taken away by autism” or “not ‘my’ child” that is a sign to leave.