Fibromyalgia - Blog Posts

Seeking advice: new wheelchair user

I will be using a wheelchair semi-regularly the next month to see if it will help reduce pain flare-ups / baseline pain and to figure out if it's helpful for me.

Tomorrow is the first day and I am going to uni and therapy. I have only used a wheelchair a couple of times but I'm comfortable with folding it and such as my dad's disabled and it's his wheelchair I'm borrowing. In theory I know how to maneuver around but I'm nervous about it.

Do any wheelchair-users have tips/advice for new wheelchair-users?

Extra info: it's a foldable wheelchair, brand is Quickie. I'm nervous about tipping backwards (no anti-tip), going up and down curbs, taking the metro, painful hands/arms/shoulders.

I forgot about this post. But I did it @wittlepuppydog. I didn't shave my head completely, I just got a short hairstyle instead. It was about 5 months ago now and I absolutely love it. It has made the pain considerably more bearable as hair is no longer brushing against my face constantly, and I no longer have to tie it up to get it out of the way (which also hurts).

Honestly, it's not even just about the pain. I feel more like me. I recognise myself in the mirror. I like my hair, I like my face - something I could never comfortably say before. It feels like my pain gave me a gift. I never thought I would say something like that about my chronic pain. But yeah, it has helped and I have never felt more like myself than I do now.

And people's reactions and their staring honestly haven't faced me. I don't care about it anymore. Also, it's hard to say whether they're staring bc of the hair or bc I'm young and disabled and walking with a cane.

Thought I'd add some pictures for reference;)

I've been considering shaving my head because of the pain. It's still constant and my hair makes it worse. Is it stupid? Will I regret it? Will I feel like I'm "giving in" to the pain? Does that even make sense? I'm tired of feeling like I have no control over the pain. And this feels like a way I can maybe at least not hurt myself more and gain a little control back? I don't know. I'm tired

I recently started using a cane everyday and so my previously invisible disability is suddenly visible. I also started medschool. It's been a while since I was properly social so I have questions...

People don't walk next to me. And if they accidentally do, they leave to walk next to someone else even if that means squeezing in three people on the sidewalk. No one talks to me if it's not to ask me "what's wrong". I have really tried to make an effort and talk to people but I don't know what to do.

Can it have something to do with my disability and my cane? Like they're scared to say the wrong thing? Or maybe it's because they've sensed the autism?;)

I've been considering shaving my head because of the pain. It's still constant and my hair makes it worse. Is it stupid? Will I regret it? Will I feel like I'm "giving in" to the pain? Does that even make sense? I'm tired of feeling like I have no control over the pain. And this feels like a way I can maybe at least not hurt myself more and gain a little control back? I don't know. I'm tired

It's so frustrating that my neurologist is so clearly in over his head. To my face he's denying that there's any uncertainty in the diagnosis he has given me and is blaming anything that doesn't fit on my mental health. But on paper he has gone back and forth between two diagnosises for months now. He is switching between the two every time he writes in my medical chart and when I ask him about it he denies that he's unsure. I can't fucking wait to start af the headache clinic

Can't believe it took me 8 years to realise that the random pain I get in half of my face for a couple of days to a week every other month is a migraine...

I always thought it didn't matter bc it's not every day like my fibro pain

My chronic pain has gotten worse every winter for the past 4ish years. And not just a flare up that goes away again but permanently worse. And I don't know if it's simply a coincidence that it happens every winter but I'm so nervous and scared because it's getting cold again.

I finally got the tattoo I've wanted for years😁 so I always have an extra spoon for bad days🥄

fibromyalgia is definitely fibromyalgiaing right now :(

This is probably asking a lot, especially because it comes out of nowhere, but I figure if this story is gonna get even an ounce of traction, it'll be on timblr.

I'm a disabled, fat, queer, neurodivergent author who writes about disabled, fat, queer, neurodivergent characters and topics.

My current project, Passing for Fine, is about an agender ex-athlete named Jessie who develops fibromyalgia after a traumatic accident. They end up gaining weight, being totally abandoned by their teammates and people they thought of as friends, and moves to a new city to live with their overbearing, perfectionist mom.

While in this new city, Jessie meets a cadre of new friends who all, in one way or another, fall between the cracks, or don't fit the mold you'd expect.

Ryan is an ex-felon turned baker (literally looks like he could kill you but is actually a cinnamon roll) who struggles with the way he's percieved due to his plethora of tattoos (some of whoch are pretty scary). Ash is a wheelchair-bound transman who works at a gym and is the only one of the group who owns their own vehicle. Alexis is a Black woman who helps manage the local community garden and co-op but struggles to feel welcomed in Black spaces due to her lighter skin tone. Eddie is a non-binary phlebotomist who struggles to be taken seriously as a non-binary person due to xir masculine appearance.

Ultimately, it's supposed to be a rom-com, but the story also deals with Jessie's depression, internalized ableism, and self-doubt (all of which they work to overcome/adjust to/live with throughout the story) while they are also helping to save Ryan's café from gentrification and over reaching landlords.

I'm currently in the process of my second draft, but was thinking if enough people seemed interested by this initial post, that I'd start posting chapters here, too.

The cover was made by Carmilla from carmillacreates.com

Me trying to get out of bed in the morning

I feel like half my body needs to be soaked in ice while the other half covered in heating pads…just the issues of chronic pain ⋋_⋌

Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.

Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.

But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.

He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)

I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.

I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.

Hmm

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

Uncut and unedited fell sans asmr