#chronical fatigue

[i-say-stupid-things]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[lupusbaby]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[mysillycomics]

[purrfurnax]

[post-grammatic-stress]

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.

[chronicpaingirlie]

shaking myself (very gently) . being in pain takes a lot of energy!!!!!! being in pain is exhausting!!!!!!! you are not lazy or weak because you need to spend so much time resting, this is your body coping with how much pain you’re in literally 24/7!!!!!!!!!

[thepeacefulgarden]

[love-me-love-my-weirdness]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[bobbi-bee]

Something I think people who don’t live with chronic illness don’t understand is that there is a big difference between resting to get better and resting to avoid getting worse.

[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

[crippledpunks]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

[lupusbaby]

Say it with me! Wheelchairs aren’t sad! Mobility aids aren’t sad! Mobility aids are instruments of freedom!

[pibsboots]

I've always had chronic fatigue. I remember being twelve, and an adult mentioned how I couldn't possibly know how tired they felt because adulthood brought levels of exhaustion I couldn't imagine. I thought about that for days in fear, because I couldn't remember the last time I didn't feel tired.

Eventually I came to terms with the fact that I was just tired, and I couldn't do as many things as everyone else. People called me lazy, and I knew that wasn't true, but there's only so many times you can say "I'm tired" before people think it's an excuse. I don't blame them. When a teenager does 20 hours of extracurriculars every week and only says "I'm too tired" when you ask them to do the dishes, it's natural to think it's an excuse. At some point, I started to think the same thing.

It didn't matter that I could barely sit up. It was probably all in my head, and if I really wanted to, I could do it.

When I learned the name for it, chronic fatigue, I thought wow, people that have that must be miserable, because I am always tired and I cannot imagine what it would feel like if it were worse.

Spoiler alert, if you've been tired for a decade, it's probably chronic fatigue.

Once I figured that out though, I thought of my energy as the same as everyone else's, just smaller in quantity. And that might be true for some people, but I've figured out recently that it absolutely isn't true for me.

I used to be like wow I have so much energy today I can do this whole list for sure! And then I'd do the dishes and have to lay down for 2 hours. Then I'd think I must gave misjudged that, I didn't have as much energy as I thought.

But the thing is - I did have enough energy for more tasks, I just didn't go about them properly.

With chronic fatigue, your maximum energy is obviously much smaller than the average person's. Doing the dishes for you might use up the same percentage of energy that it takes to do all the daily chores for someone else.

If someone without chronic fatigue was to do all the daily chores, they would take breaks. Because otherwise, they're sprinting a marathon for no reason and it would take way more energy than necessary. We have to do the same.

Put the cups in the dishwasher, take a break. Put the bowls in, take a break. So on and so forth. This may mean taking breaks every 2-5 minutes but afterwards, you get to not feel like you've run a marathon while carrying 4 people on your back.

Today, I had a moderate amount of energy. Under my old system of go till you drop, I probably could have done most of the dishes and wiped off the counter and then been dead to the world for the rest of the day.

Under the new system, I scooped litter boxes, cleaned out the fridge, took the trash out, cleaned the stove, and wiped off the counter and did all the dishes. And after all that, I still had it in me to make a simple dinner, unload the dishwasher, and tidy the kitchen.

It was complete and utter insanity. Just because I sat down whenever I felt myself getting more tired than I already was.

All this to say, take fucking breaks. It's time to unlearn the ceaseless productivity bullshit that capitalism has shoved down our throats. Its actively counterproductive. Just sit down. Drink some water. Rest your body when it needs to rest.

There will still be days where there is nothing to do but rest, and days where half a load of dishes is absolutely the most I can do. But this method has really helped me minimize those, which is so incredibly relieving.

[jenacat8-blog]

Being neurodivergent and chronically ill is crazy because you already have issues with executive functions and then your body hinders you even more. AND your sensory issues are heightened by the pain you feel.

[positivelyqueer]

hi, you there who are or are thinking about spending all day in bed, it’s okay, I’m not telling you to get up. I’d just like to do a quick check in to make sure you’ve got everything you need to be comfortable and safe.

Have you gotten up to take any meds you need?

Do you need to open or close your windows or curtains/blinds to make your environment nicer? (Fresh air, keep the cold out, sunlight/darkness)

Do you have a water bottle or a glass of water easily accessible? (Can also be juice, cordial, a meal replacement drink or anything else)

Do you have any over the counter or prescription as required meds you might need, like painkillers or anti nausea meds?

Is your phone or laptop charged?

Are you wearing comfortable clothing?

Do you have enough blankets/pillows to be warm and comfortable?

Do you have any snacks like fruit or chips or muesli bars in case you can’t get up to make a meal?

Are you able to change positions in bed (or sit up if you’re able)?

Do you have any regulation tools like fidgets, ear plugs, or journaling/art books or low energy hobbies you might want?

Are you being gentle and patient with yourself and your body today?

Thanks for doing this check in with me. I like to have some of these things prepared on my nightstand, or all together in the same space in my room so I don’t have to do as much work on low energy days. It can also help to have someone else prepare or get these things for you if you’re unable. Hope you have an uncomplicated day.