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One of the worst things about chronic fatigue is when you so, so desperately want to wake yourself up, and focus, and be alert, but you just can’t no matter how hard you try. You’re just stuck in this fog and you can’t get out.

kayvsworld

my body, tearfully: when sleep???

me: my dude we just woke up!! It’s time for wakefulness and doing things and Productivity

my body, weeping: but???? when sleep?????

rosslynpaladin

Weird Experience: Comforting people as you explain your Chronic Condition

Empathy can have funny effects when you have to try to get people to understand your diagnosis/life with an Chronic Illness.

It’s like you have to ease them into the idea, and then pat them on the back and try to cheer them up while it sinks in for THEM that YOU have an incurable condition.

Their entire world view is predicated on the idea that “all illness is temporary”. They genuinely cannot cope with the idea that someone will not Get Well Soon. And YOU have to be one to ease them through this existential crisis.

You can’t just say to people, “No I am not doing anything much until the one thing at the end of this month, because I am still sick, and will be still sick for the foreseeable future. Getting into a remission will require a few years of steady slow work which might not have any effect even if I do everything right. I am sick. I shall be sick. This is my LIFE now. I’m sad, yes it’s not what I wanted, but I’m a person not a tragedy so hold off on the pity okay?. No, there’s nothing to be done but what I am already doing. “

And you can’t say this because THEY will panic and be offended by your total bluntness.

You have to protect their emotions about your condition. It’s weird. And an exhausting dance to do over and over again.

powerfullygaypigeon

*does laundry AND dishes consecutively* I am the most high functioning person alive. I can do anything. I could do my taxes rn if I wanted to.

*takes half an hour to make it up the stairs*

my-adhd-self

One of the worst things about chronic fatigue is when you so, so desperately want to wake yourself up, and focus, and be alert, but you just can’t no matter how hard you try. You’re just stuck in this fog and you can’t get out.

wormtitty

“what the fuck is wrong with me?” i ask, fully aware of the mood, personality, and anxiety disorders i have

thebibliosphere

“Are you sure...”

I’m having one of those days where standing is causing too much pain, so even the act of feeding myself becomes a task in excruciating agony until I cave and my able bodied partner has to step in and help me. Walking hurts. Going to the bathroom hurts. My whole physical existence hurts.

And as if that is not bad enough, to add insult to literal injury, I can’t talk about it. I cannot tag it by name any more, because it has been deemed inappropriate. My suffering is explicit. It is unmarketable.

And I know we all have our theories as to why, I know some people think it’s to do with drugs, or kink or something as simple as the beginning letter of the words being the same. But I’ve done this song and dance, I’ve seen disability and illness communities deleted out of existence before. They framed it as a mistake then too. But the telling thing, the really telling thing, is that it keeps happening, and it’s a mistake they never bother to fix.

And I’m tired, I’m so fucking tired of the able bodied people who come onto my posts and my twitter who say things like “are you sure? are you sure your posts are gone? that seems unlikely to me…” because it’s the exact same shit they say in real life too.

Are you sure? Are you really sure you have this condition? Are you really sure this hurts? I had a friend once who hurt their leg and had to use crutches, but they never complained like this. Are you sure you’re just not trying hard enough to fit in and be deemed worthy of basic human respect. Are you sure? Are you really, really sure? I find that hard to believe.

*despairing jazz hands*

Yes, we’re sure. This isn’t our first rodeo of flaming tire fire bullshit.

We’re sure.

it-is-ok-i-am-ok

I want all the spoonies on here connected.

Reblog, follow or like to show how big the community is and to show you’re there for all.

anaccessiblelife

Hi everyone!

chronic-perks

What should I do when my rheumatologist will not consider that I have fibromyalgia? When a whole bunch of other people believe I do?

Hi!

If you have other medical professionals who believe you have fibromyalgia, and your current specialist will not consider it, you might be able to see if your primary care doctor could speak with/ correspond with your specialist?

Otherwise, if you think your rheumatologist is being obstinate or a bit of a know-it-all, try getting an appointment with another one. Second opinions are extremely valuable. Also remember that as much as we want to trust and respect them, not all professionals are very good at what they do.

loerilaye

Every profession has many someones who graduated or were otherwise trained/certified yet we’re in the bottom 50% of candidates given their credentials. And every bottom 50% of performers who nevertheless are deemed qualifiable has one or more people who were the absolute worst performers in their class. It doesn’t matter if you’re talking about a doctor or a plumber, a programmer or a cook, a salesman or a garbage collector – a person’s title alone never illustrates their aptitude.

thefibrodiaries

there is a special place in hell for people who call disabled people “scroungers” for not being able to work or are in need of disability benefits to help with the extra costs of living with a disability.

autistichirohamada

You’re so fucking ableist and gross if you think disabled people living off benefits get “paid to do nothing”.

bubonickitten

one of the most frustrating moods is Desperate Need to Create Something, Anything + persistent lack of motivation/attention/ability/time/inspiration/energy to do so

kintsukuroi-heart

OH MY GOD, SOMEONE PUT IT INTO WORDS

bubbles

me: why do i mysteriously feel like crap and keep wasting time doing nothing?

brain: you have depression

me: no that cant be it, it has to be something i did

coffiend-jackalope

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.