#fibro fog

[castellveinya]

“Stop saying you’re disabled. It’s so negative.”

Well, I’m not going to start saying, “I have ‘different abilities,’” like I’m a part of the X-Men. Thank you very much.

…But maybe I will. That isn’t too bad of an idea.

[calmmyfears]

sleep deprived and too fatigued to think is my normal state of being, i have to accept.

[bellatrixxmarierose]

Found on instagram 🙃

[myalgicencephalomyelitiscfstom]

[the-fox-collective]

Me and my wife were talking about it and genuinely fibromyalgia is the worst disorder I have. It is the one that disables me the most.

This is just for me. This is a personal post. This is about what ruins MY life the most.

I'm diagnosed with seizures and OCD (that I don't like talking about but it's relevant here) and FND and hypermobility and still every day, the fibro is the worst thing.

I stopped going to a lot of my classes in college because of fibromyalgia, I had a really busy Monday-Wednesday and so I would be forced to rest of Thursdays and often Fridays too. I missed critical information from my classes and wasn't able to catch up because I did not have the time or energy to do double the amount of work of everyone else, especially because the normal amount of work was making me so sick. The chronic fatigue took my alevels (16-18 education) from my workload AAB to my exam results ACC.

Fibromyalgia is known for widespread chronic pain. I have been in pain since I was 10 years old and my baby brother died, this event is also what triggered my mother's fibromyalgia. I have severe pain in my back, legs and shoulders. I have moderate pain everywhere else. I have very sharp pains in my chest and often my abdomen that stay for about 5 minutes before calming down. It is 10/10 pain. It reduces me to a crying curled up mess on the floor. No matter where I am.

I am tired all of the time. I do not sleep through the night, I wake up multiple times every single night and I am lucky to get 3 hours uninterrupted sleep. I take naps throughout the day, long ones, because I am so fucking exhausted all the time.

I have a sensitive digestive tract. I am severely lactose intolerant and any amount of deviation from my normal diet can cause pain and inflammation and bowel problems.

And fibromyalgia comes with depression and anxiety. I mean it makes sense. Of course I'm fucking depressed, I cannot have offline friends, I cannot work, I struggle to even have hobbies and keep my house together.

The seizures are bad, the gait problems are bad, the constant compulsions are stressful and shit, but nothing compares to how fucking infuriatingly crippling fibromyalgia is for me.

AND THAT DOESNT EVEN TOUCH FUCKING "FIBRO FOG" I hate that term SO MUCH

[seasonallydefective]

If you want a visceral example of struggling with brain fog:

Yesterday I spent ages googling “word for when you really empathize with someone” “polite way to say that person is my spirit animal” “word for when you feel like you’re on the same wavelength” and was getting definitely not the word I was desperately trying to remember. I could literally feel the shape of it but couldn’t recall what it was. I started to think maybe English didn’t have that word.

And today I realized

Relatable.

The word I was looking for was relatable.

[gayvampyr]

this shouldn’t have to be said but if someone who struggles with cognitive issues due to things such as fibro fog, adhd etc has difficulty speaking or getting their point across, do not point it out. im talking about stuttering, misremembering words and definitions, using the wrong words in place of other ones, mixing up words or merging them together. you are allowed to help us find the right word but wait for us to ask first and give us a chance to find it ourselves. blurting out random words causes a lot more confusion for us and we often end up losing our train of thought.

also, in a similar vein, we may pause to think about what we’re going to say next, and it’s important that you not interrupt. for me, my train of thought is already on the verge of derailing. if i stop talking mid-sentence, give me a second to find my words and sort out my jumbled mess of a brain. don’t start speaking like we’ve finished our sentence and please don’t just abandon the conversation. it’s very frustrating, especially when you make jokes or tease us for forgetting words or misspeaking and it makes it much harder for us to get to our point. and tbh it’s embarrassing and it sucks because our brains aren’t doing what we want or need them to do and we don’t need a reminder every time it happens.

like the jokes might seem harmless or lighthearted but it hurts nonetheless because we are constantly in a struggle against our own brains. it seems like it should be such an obvious thing, not to tease or make fun of someone with cognitive issues, but so many people do it, including some of you who don’t think you do— particularly if you don’t think the reason behind it is a disability. it’s not the same as joking about your friend making a typo in the group chat. (actually sometimes it is). those are generally minor slip-ups that happen to everyone. for a lot of us, they’re constant. we’re almost always trying to get our brains to work with us rather than against us and pointing it out only makes it that much harder to concentrate on actually articulating our thoughts instead of focusing purely on avoiding misspeaking so you won’t point it out again. obviously this will vary from person to person, not everyone with these symptoms feels the same way i do, but i think it’s a good rule of thumb to just. not interrupt and/or draw unnecessary/unwanted attention to our speech problems. i don’t think it’s too much to ask.

[stars-and-branches]

god save me from the dumb shit i say when hit with brain fog