Tired

Chronic Fatigue,Fibro, chronic headaches/migranes, with possible POTS. She/her, 21

[fernthefanciful]

"It doesn't have to be perfect, it just has to be done." I chant, through gritted teeth, trying to craft something I could do perfectly in my sleep before my disability

[knife-wife]

A meme about my current situation because this is how I cope

[potsiepumpkin]

Me waiting for the pain to go away before getting back up.

[chronicallytiredofeverything]

Does anyone have any tips on managing covid? I'm only on the morning of day 2, and it's making all of my symptoms flare worse. I can't stop shaking from the fever. And it feels like I've been hit by a truck a few times. I haven't had it before, so I have no idea what this is going to do to me. Any advice to manage this would be very appreciated.

[heyatleastitsnotcancer]

Someone owes me a SSI payment every time a person tells me to "just" go on disability.

[random-fandom-place]

Loved that tag

[catmat]

I feel that life with a chronic illness is basically just trying to get back to our baseline. We experience setbacks, take weeks to recover, and we are finally at our baseline for a few days only to experience a situation that causes another health decline. Then the cycle restarts again.

People don't understand that it takes so much energy that is already deprived, to crawl your way back to your baseline so that you can be semi-fuctional only to be hit with another setback.

So when people say that we should try harder at getting better, it's really upsetting because we are trying our best just to function. And it is so tiring.

[peach-scented-chupacabra]

Accepting myself, even the parts that hurt me, has been a struggle. But I'm trying.

[hopelesscalico-deactivated20230]

i am so fucking sick of people trying to act like it’s ableist to acknowledge that disabled people Are Disabled. this whole movement has started around people saying “disabled people are just as capable as abled people” when the conversation that SHOULD be being had is “there is nothing wrong with needing accommodations that abled people don’t”

[spoonie-humour]

tfw people don’t understand how long chronic illness takes to research like “oh they’ve made great strides in AIDS research!” my guy they don’t even know why my illness HAPPENS they’re not finding a cure any time soon

[catmat]

I think what a lot of people don't understand is the cumulative effect that chronic illnesses have on the body. We have our coping mechanisms but that doesn't mean that the flares, constant symptoms, and toll it takes on our bodies get easier as the years go by.

On the contrary, the amount of flares we experience wear us down. It's not like getting a flu once a year and feeling perfectly fine in between and having that chance to recover.

A flare would be like having a terrible flu with the worst symptoms you can imagine that never fully subside. You come out of that flare worn out, completely exhausted, and still experience those symptoms everyday.

Then the next flare comes a couple of weeks later, and you're already worn out but have no choice to endure the symptoms and just hope it passes quickly. And this happens over and over again and most often indefinitely.

The cumulative effect of chronic illnesses chips away at an already strained and exhausted body. And I can't even begin to describe the emotional toll this has on us as well. The amount of willpower it takes to endure the constant flares, the symptoms, new symptoms that arise, the endless appointments, the gaslighting, inaccessibility, and not being believed is unreal.

And when we struggle and can't cope, it's not because we're not strong, it's because we have a health care system that is built to cure but not to take care of people with chronic illnesses. We are left to manage on our own, with little support from medical professionals, often at the most painful times in our lives.

Chronic illness isn't about just being sick. It's about everything in between, everything unseen, and the amount of silent issues that pile up on each other that society expects us to take in stride.

So when people say that they wish they could just stay in bed all day, they need to remember that having a chronic illness is unlike that headache they had that time or the flu they had last year. It's a cumulative physical and emotional toll that we endure day after day. And it is never-ending.

[angelaeleni]

Trust that there are other things worthwhile for you and they will come.

[the-curl-almighty-squad]

Friendly reminder that:

Young people can have arthritis too.

There are hundreds of life long conditions and diseases out there that are typically diagnosed between 12 and 30.

There is a vast difference between being tired and having chronic fatigue.

Just because you can’t tell that someone is unwell from looking at them, doesn’t mean that you should assume that they are ok.

Many chronic illnesses are life long, and incurable. Many of them are potentially fatal.

If you have a disease like Lupus, on good days you still feel like you have a bad flu, 24/7.

Many of the medications used to treat chronic conditions have side effects that can really affect someone’s self esteem - like extreme weight gain, skin changes and hair loss.

Most chronic illnesses have very little awareness - its unlikely that you’ve heard of Sjogren’s Syndrome, Scleroderma, Ehlers-Danlos Syndrome or Fibromyalgia.

However these diseases can cause symptoms as varied as joint pain, fatigue, constant nausea, kidney failure, pneumonia, photo sensitivity, full body rashes, paralysis, strokes etc.

So please remember that invisible illnesses exist too :)

[chronicallytiredofeverything]

Sometimes i forget how tiring it is to shower. Like i remember when i used to feel awake and refreshed after a shower.  Now i need to lean on a wall after a 10 minute shower of just standing there. I need to lay down after if I wash my hair. Its exhausting. I hate having to ration my energy. If I want to go out, I cant shower that day. If I shower that day, I cant go out. I just want to be able to take care of myself without being so damn tired.

[s7aff0230-deactivated20211209]

There are studies on this phenomenon. It’s a pretty universal experience. The “sleeping” part of your circadian rhythm can be triggered by a drop in your core temperature. Stepping out of a shower will induce that state and trick your brain into feeling tired. 

I don’t want to invalidate OP’s illness. I’m sure that’s a real and difficult thing. However, I don’t think it’s healthy to fixate on natural occurrences in your body and label them as evidence of helplessness. It’s cruel to beat yourself up unnecessarily like this. 

[chronicallytiredofeverything]

I appreciate the study, and how that helps to explain what so many people can feel. And this reply is not just in response to this, but to many others like this saying somewhat of the same thing, and i feel like i need to clear this up. This post is about chronic illness, and how it effects every part of my life, and so many others lives. Im not fixating on this as a way of labeling myself/my illnesses as helpless. My body attacks itself on a daily basis. I cannot perform basic tasks like an able bodied person can do. I get so tired after showering because my body physically cannot stand to be in that position for a long period of time. Showering to me feels like running a mile. Its so tiring because I am chronically sick. Its physically exhausting on a level that simply cannot be explained by studies meant to help able bodied people. I am sick, and im not beating myself up by showing my very real experience in being so.

[catmat]

I'm tired of ableds telling me I'm "so strong" despite my disability.

I don't want to be strong.

I don't want to be an inspiration despite all of the obstacles that I face.

I want to live in a society where I don't struggle with barriers, am accommodated, respected, and given the care and treatment that I need.

I want to be treated fairly. I want to live comfortably enough to not have to worry about medical bills. I want to be believed by doctors and treated with dignity.

I deserve to be treated humanely.

I deserve respect.

I deserve inclusivity.

I deserve equality.

I deserve fairness.

I deserve the right to be just me.

[foulserpent]

[bpdsuperboy]

someone: how are you feeling

me: im not please wait an hour to try again

[thatchronicfeeling]

Oh, are you finding my chronic illness incovenient?

Imagine how it feels for me.