#ME/CFS

[chronicallydragons]

having a massive flare up after ME awareness day like WAS I NOT AWARE ENOUGH ALREADY?!

[crazycatsiren]

Taking a shower always costs spoons but also always makes me feel better. You give some you take some, I guess.

[itsbeababe]

The realization that I am in fact physically disabled was a slow, incredibly painful one. And while obviously, more work needs to be done on accessibility, treatment etc., I wish I had like. Some sort of emotional support on the journey from "I'm lazy and a bit of a hypochondriac" to "everyone including yourself sees you as lazy and a hypochondriac despite the presence of a very real disease and that will never change because you will likely never fully recover nor be able to fully explain your situation to an uneducated third party"

[myalgicencephalomyelitiscfstom]

"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."

—-

“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.” —-

“Many patient stories show that those who try to adapt to the labor market often experience relapse. Working life is largely not adapted for people with low and varying work capacity, says Trude Schei, assistant secretary general of the ME Association.”

--- Volunteer in Norwegian ME Association: “There are days or weeks when I can't do anything. Few employers will hire someone who disappears for an extended period of time due to illness. It makes it difficult to return to work, especially if you don't get better.”

---

“We need more research to understand the disease mechanisms behind ME and develop more targeted treatments. The healthcare system should listen more to patients,”

[vampiresblog]

as someone w a chronic illness, there is a massive gap between the people in my life who bombard me with sympathy and just keep wishing that I'll get better (I won't, its chronic) and the people who have accepted that I will be sick for the rest of my life and are willing to change and adapt to fit me in their lives, and move mountains for me to be understood by healthcare professionals.

[hellyeahsickaf]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

[puttingwingsonwords]

sometimes I forget standing up isn’t painful and difficult for most people so I’ll be watching something like game changer and see the people standing behind their podiums the whole episode and think ‘wow don’t they need to sit down. how can they still think coherent thoughts’ and then I’m like oh. yeah. I have a disease

[i-dreamed-of-paraparaparamore]

Having ME/CFS as a night owl is such a weird experience. I wanna be asleep by the time it's dark outside. But also the cool night air and the night sky make me wanna stay up

[spoonfulofhannah]

Disabled and chronically ill people are allowed to enjoy things and do things they like (if they’re able) while still being sick and disabled. Yes, even if they aren’t employed. Hope this helps.

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[onthegreatsea]

after the incredibly stupid mistake that was 'exercising regularly' in january, last year, i think i've finally actually really truly recovered from the crash that followed

i've been doing the best to pace myself properly and have actually been relatively lucid the past two(three?) months and not constantly bed bound (woah)

[chronic-melon]

Reblog if you understand that disability is not a monolith and two people with the same disability do not have identical experiences ✨

[eternallysluggish]

Do any other chronically ill or disabled people feel like they're watching themselves rot away due to how little they can do as a result of their conditions

[myalgicencephalomyelitiscfstom]

Sadly very true. Happened to me and still suffering 30 years later (I was undiagnosed at the time).

[sleepysleepysleepybaby]

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.