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ME awareness day: what does "fatigue" feel like 

ME/CFS got saddled with a name that sucks. u say "chronic fatigue" and everyone's like "oh big mood" because tbf everyone is tired all the time in the late capitalist hellscape. so what's it feel like being on the receiving end of the "fatigue" in "CFS"?
at a metabolic level, it's something to do with an interaction of the immune system, the nervous system, the mitochondria. it's permanent, constant, there is literally no way to refresh ur energy.

ME awareness day: what does "fatigue" feel like 

it's often described as "flu-like symptoms". ur immune system is responding to literally any exertion with a full-blown flu response (minus specific stuff like the snotty nose and coughing, although i have a weird sore throat 24/7). if you do anything, and i mean *anything*, the symptoms get worse and take a while to die down. if you exert urself too much, you get a disproportionately massive flare-up. there's no predicting what's gonna set it off.

ME awareness day: what does "fatigue" feel like 

after a few years you can kind of guess by experience "oh if i do [x] it'll probably wipe me out for [n] days". u can mitigate this a bit by simply doing as little as possible, by expending absolutely as little energy as possible. oh and cognitive exertion also sets it off, so creative projects, watching a long film, reading a book, holding a conversation in real time - all of this is likely to put you in energy debt and knock you on your ass.

ME awareness day: what does "fatigue" feel like 

some of what the fatigue feels like: the full-body lactic acid stress and muscle weariness after doing a hard day's physical activity. the cognitive dysfunction of being woken up at 3am after an incomplete night's sleep. shakiness, random allergic flare-ups. sensitivity to light and noises. racing heartrate. when i worked full time i used to get migraines from pushing on and trying to stick to a 9 to 5 schedule against what my body was telling me.

ME awareness day: what does "fatigue" feel like 

it's difficult to sustain a train of thought. words disappear. i can feel my energy running out while i write this thread. this is the cognitive aspect known as "brain fog".

ME awareness day: what does "fatigue" feel like 

the "Post-Exertional Malaise" element is the crash that follows activity. you can feel it coming on, and it always feels like "nah i can keep going, i can just push on thru this", and that always results in the same delayed crash that lasts much, much longer than should really be necessary. as in like: several days or weeks recovery time.

ME awareness day: what does "fatigue" feel like 

oh yeah and you can't just rest it off. the point of rest isn't to like recharge ur battery thru luxuriating self care. it is literally just waiting for the symptoms to pass (again, this can take days) while simply *doing as little as possible* to avoid adding even more fuel to the flareup. like literally there is no sleeping this off. you just have to *do nothing* until it decides to end.

ME awareness day: what does "fatigue" feel like 

and if u want to sleep it off: good luck with the insomnia that's also 1) a symptom and 2) an inevitable result of ur body clock getting f'd up by staying indoors 24/7

ME awareness day: what does "fatigue" feel like 

ok i'm going to take a break because i'm writing this thread from under a blanket and i can feel my brain hurting

ME awareness day: what does "fatigue" feel like 

@alex please take care of yourself 💜

ME awareness day: what does "fatigue" feel like 

@alex thanks for sharing ❤️

ME awareness day: what does "fatigue" feel like 

@wandrew Thanks for reading! 💓

ME awareness day: what does "fatigue" feel like 

@alex Just want to say thank you for this thread, and for setting it out so clearly 💚

ME awareness day: what does "fatigue" feel like 

@g1comics Thanks for reading it pal! <3

re: ME awareness day: what does "fatigue" feel like 

@alex Thank you for the effort you expended to write this thread. I have researched this a little bit to try and understand, but there's nothing like having it explained by a friend.

How we could make things easier for you on here? (answers can totally wait until you feel up to it)

re: ME awareness day: what does "fatigue" feel like 

@erosdiscordia Thanks for reading it pal, I really appreciate that. I'll get back to you! 😴

re: ME awareness day: what does "fatigue" feel like 

@alex 🍵​💤​

@alex thank you for spending your scarce energy on education! Is wishing you a swift recovery appropriate?

ME awareness day: what does "fatigue" feel like 

@alex this is a really good thread. Thank you <3

ME awareness day: what does "fatigue" feel like 

@alex I don't have the insomnia, otherwise what you describe is 100% me.
In the last six weeks there were maybe 2 days where it wouldn't have been better for getting better again to just rest all day instead of doing anything, except some days a small walk or a tiny amount of yoga.
I'm constantly walking a line that's impossible to walk, between trying to get better physically and keeping my will to live by doing stuff that makes life worth living.

ME awareness day: what does "fatigue" feel like 

@alex I never said I have it because I don't have a diagnosis.

ME awareness day: what does "fatigue" feel like 

@alex
> doing stuff that makes life worth living
and of course cooking, grocery shopping, laundry, showering, dishwashing, ...
most of the time some of that has to be neglected.
today, I washed my hair for the first time in ten days, and I haven't shaved in 14, even though I hate having a beard.
Yesterday my flatmate cleaned all the common areas and did all my dishes, again, and I have no idea how to make up for it.

@alex thanks for putting it so well, and I hope it's okay I wrote my mysery in your thread. It made me aware of how bad I really am and I had to get it out.

@j12i thanks for reading it, and thanks for sharing your own experience. yeah i really agree with your description of balancing *not doing too much* with trying to do *things that are good for your wellbeing*. it's hard.

ME awareness day: what does "fatigue" feel like 

@alex huh. i have often described how i feel as "the tiredness you get when you're sick but without the other parts." and at the end of a week i usually just crash and lay in bed all day. maybe i should look into this

ME awareness day: what does "fatigue" feel like 

@chemelia check out on twitter, and read some accounts on the ME Association website. it's honestly uncanny how close everyone's experiences of ME/CFS are, i think you'll get an idea quickly if that's what you're having. it's really important to catch it early so you don't push through it and burn out! also it's useful to have a good understanding you can bring to your doctor (it's often very difficult to get a correct diagnosis).

ME awareness day: what does "fatigue" feel like 

@alex @chemelia definitely look into this. Your description of crashing at the end of the week sounds just like my experience with ME*. It's not just viral, for some of us, it's a slow decline over years, with increasingly worsening symptoms. I don't want to scare you, I just want you to take care of yourself.

*which I describe here gwenfarsgarden.info/2021/03/sl

ME awareness day: what does "fatigue" feel like 

@GwenfarsGarden @alex @chemelia I kept pushing and pushing until I was at like 1 day activity, and 2 days rest at least, while still at uni before I let myself take a break. I said to the doctor that I needed to rest for a little while, be able to breathe because everything is fucking impossible.

Then when I got the sick leave, my body just immediately started to shut down because I finally let my self rest, and knew it was safe because I didn't need to catch the next uni deadlines.. 😭

I couldn't talk properly for 6months, I stopped dreaming, and while Loa was running around playing Pokémon Go (yes it was that first summer), I was laying on a blanket in the shadow in the park. (I'll explain some other time why I want resting at home)

So, yeah catching it early can be a life saver.

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