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M.E. Awareness Day 

ah, M.E. Awareness Day crept up on me again. i've been receiving emails from the M.E. Association about it, and was kind of wanting to participate in some way (I have M.E.) but one thing about having M.E. is that it makes it significantly difficult to participate in things. please take a look at the tag on twitter to read about people's experiences with this disease.

M.E. Awareness Day 

i'm grateful for the comrades I've met onhere who are having the same or similar experiences with M.E. and other fatiguing illnesses. it's a lonely and horrible condition.

M.E. Awareness Day 

i spend most of my day, every day, lying down, with some way of blocking out light and/or sound. i can leave the house but it's a huge investment of energy i don't have much of, and it makes me sick for days afterwards. it's weird to think of this as "severe" because it's still something that's crept up on me, that still feels alien to me, that i haven't fully internalised. idly looking at the internet is one of the only activities i can really do from my sofa. it sucks!

M.E. Awareness Day 

4 years ago i was still working full-time - although my ability to do that was clearly decreasing, and i took on reduced hours. i only started thinking of myself as "disabled" two or three years ago, it felt like taking on a name that wasn't mine.

M.E. Awareness Day 

even while writing this i've run out of cognitive energy. my thoughts are running out. i think i have more things to say, but i'm finding it difficult to hold onto a train of thought. thanks for reading.

M.E. Awareness Day 

writing a bit more about what it's like to have M.E.: i'm utterly fatigued 100% of the time. i'm staggering through everything i do. i can force myself to do things like interacting with other people - anything i do like this feels like doing any task right after being shaken awake at 3am - i can hold myself together but it's physically stressful and hard to concentrate. i go to bed this tired, i wake up this tired, i am this tired in my sleep - there is no respite from it.

M.E. Awareness Day 

it's like jetlag - permanent jetlag. i have to stick to a routine around meal times and sleep/wake times because my body doesn't care what time it is.

M.E. Awareness Day 

@alex thank you for sharing!

M.E. Awareness Day 

@alex thank you for posting.

M.E. Awareness Day 

@alex Thanks for sharing Alex. And to say thanks for being here #onhere - it helps me get through.

M.E. Awareness Day 

@GwenfarsGarden thank you too. i am seriously glad to have made friends with you. solidarity.

M.E. Awareness Day 

@alex This sounds a lot like what I've been struggling with since I was about 12 years old. I should really have a doctor look into it as soon as I have healthcare again...

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