Chronic Fatigue

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What if there's no light at the end of the tunnel?

In the past few months, I've had an unexpected experience. I gave up on full recovery. I gave up on the narrative that at some point, I was going to be better. The idea that I might be sick for the rest of my life was terrifying... until I gave up.

I should probably clarify that I'm still working on my health, and recovery is still my goal, but I'm not holding onto hope.

Anyway the moment I gave up, the unexpected result: less depression, more joy. Whuuuut?

What if there was no light at the end of the tunnel? There's a hashtag trending now: neis... no end in sight. (or neisvoid) What if this is it?

I didn't realize how much of my depression and despair was coming from this right here: waking up and wondering, why aren't I better yet?

has anyone else experienced this? where did it lead you? I'm still having moments of depression, but it's not nearly as bad. It's like a weight has been lifted.

(scene from Second Haven Minecraft)

#ChronicFatigue #ChronicFatigueSyndrome #POTS #Minecraft

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Need Suggestions.

Hello everyone, I hope you’re all doing well. Because of ankylosing spondylitis and the medications for it, is it common to feel constantly exhausted and struggle to finish work on time? How do you manage frequent delays and cancellations? #AnkylosingSpondylitis #ChronicFatigue #Uveitis #MentalHealth

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Chronic fatigue

My doctor is finally decided that I should be researching chronic fatigue and how people cope. So I was wondering how do you survive when you can barely function as a human being when you're so tired that it physically hurts. Are there any doctors that you recommend? Any help I'm literally desperate at this moment #ChronicFatigue

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Brain fog is embarrassing

I don't always notice my brain fog but one context in which it often becomes extremely apparent is business meetings... whenever I need to talk in-depth about something technical or complex or detailed. It's like I only have so much brain to go around, and filling it up with that, there's not much left for anything else.

I go from feeling really alert and clear to stammering and having awkward pauses and searching for words and settling for generic phrases and overall just feeling embarrassed and sad.

My usual go-to comment in these moments is something along the lines of "pardon my brain fog," but lately that only makes me feel worse, and it comes across sounding like an excuse.

for anyone with similar experiences, what do you say?

#BrainFog #ChronicFatigue #ChronicFatigueSyndrome #POTS

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Minecraft for people with chronic illness

For the past 3-4 months, I've been playing Minecraft with others like me who have chronic fatigue, pain, brain fog, or isolating mental health struggles. We meet in a world called Second Haven. It's open to anyone (esp. friends and family) but designed to support people with chronic conditions.

It's been such a source of joy! We can run around, be creative, or go on adventures even while we're stuck in bed. It's like being able to meet up in the same dream.

We set our own pace and choose what we want to experience. One person built a vineyard on a hillside with an Italian villa. Another built a colorful market with a fairy tale mushroom the size of a skyscraper. Everyone is kind and understanding. I've been grateful every day that we have this shared virtual space.

If you're into Minecraft or you want to learn how to play, go to secondhavenmc.org for more info or comment here. #CFS #Minecraft #Gaming #Fibromyalgia #MyalgicEncephalomyelitis #MentalHealth #Depression

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I wish I could seriously tell a non-disabled person this. #Blindness #SuicidalThoughts #ChronicFatigue #AutismSpectrumDisorder

I’m really frustrated here right now, I’m going home, and home is very far, as I was in a formation program for software devs.
I couldn’t finish the last exercise of a list, only the first 6 ones were obligatory but I wanted to do all 10 of them, and I got stuck at 10.
It seems like a very little thing to worry about, but it’s not worry, I just have a very rigid brain that tells me I need to finish and do perfect else I’m not good enough.
And I’m already in a position there that I know, even if people say it’s ok, I don’t doubt a single moment that there will be a lot of internalised ableism and a lot of annoyed souls because I’m the first blind person in the program that actually got into it. But then the accessibility is close to none, we’re trying to get by, I’m using the very little bit of sight I have left to try and read with a lot of zoom when I can’t use Orca to read stuff for me. Yes, Orca, Lunix’s discontinued screen reader that gets tweaked from time to time but honestly it’s very much abandoned.
So everyday is me trying to not only do things in a way my brain will see my worth, in the way my brain will accept, because cognitive rigidity is a nightmare and a source of self hate. And then there’s this, being everyday surrounded by sighted people, or some lv1 autistic here and there (at least I think someone might also be on the spectrum). But no one who basically would stop being able to use the computer because is stimming so much that can’t avoid moving their hands and it making the mouse move being impossible to see anything even if you’re sighted. And then go to the restroom because needs to cry and move the whole body until stabilise to be able to do anything.
I wish I could say “try being on my shoes for a single day and feel what I feel” but truth is, I’m very much used to blindness and autism, it’s my everyday life. If a sighted person experiences blindness for a single day only, they would pretty much be even more ableist, because not so much of news but they will not be able to do anything almost. So yeah, to know what means to walk on my shoes, means 23 years and a half dealing with undiagnosed autism, lots of forms of abuse, and progressive vision loss happening abruptly after living a whole life with low vision and only discovering it at 18yo.
Quick editing just to fix an English breaking over there and to clarify that I am a diagnosed autistic, but I was only fully diagnosed after 18yo, so out of these 23 years and a half, 18 would be dealing with undiagnosed autism.
Also, no hate towards lv1 people, it’s just that the difference when it comes to a meltdown or shutdown , and the amount of repetitive movements or sounds, the level difference has a very large and clear line in between.
Also something fun to say: today I confirmed that I really hate umbrellas. I avoided buying one because carrying a cane is already a hand that will be unavailable. Try a cane and an umbrella. It’s indeed a nightmare.

(edited)
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Spoonie Card Deck!🥳🤗

Hey, y’all!🥰 Just wanted to share these cards with you! On the front of the card, is a thought for consideration and a vibrant picture, with Today’s Lesson on the back. Reading these cards in the morning can offer some guidance and direction to start your day. You can choose to follow the prompt or make any adjustments you see fit.😌

bookendsandbeginnings.com/book/9781401903671 (not sponsored, not an affiliate)

Maybe Wisdom For Healing Cards by Caroline Myss could be a tool along your healing journey!💚Wendy #ChronicFatigue #ChronicFatigueSyndrome #MultipleChemicalSensitivity #DistractMe #CheckInWithMe #ChronicPain
#chroniclllness #disability #raredisease #MentalHealth #Anxiety #autism #parenting
#ptsd
#borderlinepersonalitydisorder
#bipolardisorder
#ObsessiveCompulsiveDisorder #eatingdisorders #depression
#fibromyalgia #Lupus
#MultipleSclerosis

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