thisfibrolife

[thisfibrolife]

Person who wants to do stuff trapped in a body that needs to lie down

[thisfibrolife]

symptom journal quilt by Nicole Jones Studio

[thisfibrolife]

Migraines are crazy because you walk around thinking that just means when your head hurts really really bad but it's actually a whole neurological thing and it turns out the dull pressure/sensory overload/brain fog you get are migraines and once you start noticing it you realize you're having them like every other day and you think to yourself Hm! That's probably not good

[thisfibrolife]

My mum dropped new family lore today when she off-handedly mentioned being diagnosed with "fibrositis" in her early 30s.

I'd never heard of it before, so I Googled it and what's it called these days? Fibromyalgia. I said, Mum, do you mean to tell me you've lived 40+ years with fibro pain, and no one's done anything about it?

She said, "You can do something about it? The doctor back then just said I needed to have a baby."

Perplexed, I asked, "Why would that help?"

"Because then I wouldn't have time to think I was in pain."

So, anyway. Haha. As soon as this migraine stops, I'm hopping on a plane back home to commit murder. Anyone want to come?

[thisfibrolife]

i don't actually give a fuck whether fatness is an indicator of health because health shouldn't indicate a moral high ground. being healthy isn't some pinnacle of human achievement, it's not morally superior. and being unhealthy isn't a moral failing and shouldn't mean you're less worthy of kindness, justice, and a good life. signed, a chronically ill person who will never be "healthy" at any weight.

[thisfibrolife]

me when the disability disables me: oh what the fuck? this sucks. what the hell man!

[thisfibrolife]

My face is having uncontrollable spasms. Great. It hurts really, really, really bad.

I think part of why I have trouble explaining pain to the doctor is when they ask about the pain scale I always think “Well, if someone threw me down a flight of stairs right now or punched me a few times, it would definitely hurt a lot more” so I end up saying a low number. I was reading an article that said that “10” is the most commonly reported number and that is baffling to me. When I woke up from surgery with an 8" incision in my body and I could hardly even speak, I was in the most horrific pain of my life but I said “6” because I thought “Well, if you hit me in the stomach, it would be worse.”

[thisfibrolife]

its ok to grieve what once was + what could have been

[thisfibrolife]

[thisfibrolife]

Hey. HEY. We aren’t good at understanding how bodies work. I spent five years in undergrad (I was indecisive; graduated with six years’ worth of credits), two in my terminal master’s program, four in med school, and three more in residency. I know a whole lot about how bodies work. I am qualified to tell you that we don’t know a lot more than we do know.

This means that, when you encounter a claim, you need to weigh it against what you have experienced.

I have met doctors who were sure fibromyalgia, or “muscle hurty disease,” from the roots of the word, was just women being crazy. Turns out it’s probably at least partly due to autoimmune dysfunction. Or maybe not! Sure would be nice if we knew! But I sure as shit know it’s real, because I have it and so do the women in my family. Our bodies don’t work right, somehow. They don’t work like other people’s bodies work. I experience more pain than I “should” based on what stimuli other people find painful. I have less ability to build and maintain muscle strength. This has not kept me from doing what I love most in the world, which is have opinions, to the point where I went through the horrifically awful process that is medical training in the US just so I could have opinions all day long and get paid for it. I gain nothing from saying I have it, and in fact risk the opinions of my professional peers if I do admit to it, since it is still seen as a disease of mental or moral weakness. I’m perfectly qualified to self-diagnose, as a board-certified family physician.

And yet I believed people in positions of authority for a long, long time who said it was a mental illness and not a bodily one. As if those even can be distinct, when our brains are part of our bodies and our experience of reality is filtered through their circuitry. But I believed that I was somehow to blame for being in pain.

Life has been better since I accepted that I just need to do some things differently. If I lift weights, I need to use machines, I need to start on the lowest possible setting, and I need to increase very gradually. If I do cardio, I need a low-impact model like an elliptical trainer; running outside, every time I have tried it in my life, results in incapacitating shin splints, even if I try to work up slowly. I no longer buy laundry bins that don’t roll. My home is all on one level. I go to physical therapy. I stash freezer dinners that contain (shudder) vegetables, my least favorite thing, so that when I do feel like shit, I have an alternative to starving (or eating a block of cheese that upsets my stomach).

Accommodate yourself. This society isn’t going to help much, if at all. In your good times and days, be the person whose help you’ll need in your worst days.

[thisfibrolife]

they should invent a waking up where you’re not in pain and agony

[thisfibrolife]

The brain is an organ. Mental illnesses are illnesses of that organ. Brain scans show that there is a physical difference between a healthy brain and a sick brain. Telling someone “You’re not really sick. It’s all in your head.” is like telling someone with asthma “It’s not real, it’s all in your lungs.” The brain is an organ that can malfunction as much as any other organ.

[thisfibrolife]

chronic fatigue from mental illness and neurodivergency isn't something you can just will your way out of. your nervous system is part of your body. your brain is an organ. the fatigue is real. you're not lazy. so be kinder to yourself. be gentler with your bodymind.

[thisfibrolife]

i feel like for abled people who don’t have to spend a huge portion of their waking life in bed, it’s really easy for them to imagine it as some sort of constant relaxing vacation from ‘real life’ or from effort and feeling and working or whatever else

when in reality it’s like. im so restless. im so tired of being in bed. it isn’t comfortable. i Hurt. im hurting all the time and if i could not be in bed without being in huge amounts of pain, i would!! i miss being able to do things!! laying in bed helps the most, but a lot of the time it feels like a trap, not a comfort. a lot of the time it hurts too much to be doing anything else

i miss when laying down was a choice i could make for relaxation, when napping was an indulgence and not a necessity, when i could spend time and energy being upright and it didn’t even feel like effort !!! i don’t want to do this. this isn’t something relaxing or fun the majority of the time. it’s painful & frustrating. i wish people understood that better :(

[thisfibrolife]

[thisfibrolife]

Researchers have discovered that leaky blood vessels, together with a hyperactive immune system may be the underlying cause of brain fog in people with long covid. They suggest their discovery is important for the understanding of brain fog and cognitive decline – difficulty with thinking, memory or concentration – seen in some people with the condition. It is hoped the findings will help with the development of treatments in the future.

To Summarize:

Long Covid sufferers experience symptoms like forgetfulness and concentration issues due to leakiness in brain blood vessels, according to research findings.

Scientists from Trinity College Dublin and FutureNeuro confirm that Long Covid patients with brain fog have disrupted blood vessels in their brains, making the neurological symptoms measurable.

Blood vessel leakage in the brain, along with an overactive immune system, may be the key drivers of brain fog in Long Covid patients, leading to potential changes in understanding and treating post-viral conditions.

I can't find a single right-wing news source covering this.

[thisfibrolife]