Sometimes It Feels Like I Am Already Dead. Not Part Of Anyones Life Anymore. Locked Up In My Flat. Just

When abled people are involved, the concept of "doing it once in a while for a few seconds doesn't mean you can do it consistently on command like it's nothing" is easily understood.

For example, if someone is able to walk outside without a jacket in the cold to get the mail, everyone would easily understand that they'd still need a jacket if they were outside for a prolonged period of time. If someone is able to hold their breath underwater for a few seconds, everyone would easily understand that they'd still need an oxygen tank in order to stay underwater indefinitely.

But when disabled people are involved, that concept is somehow forgotten. You can stand for a few seconds? You must not actually need that wheelchair. You can socialize once in a long while if the conditions are exactly right? You must not actually struggle to socialize and any struggle you think you have is just fear and negativity. You can be physically active for an hour on a good day? You must not actually be too disabled to work. You have a lot of knowledge on a topic because it's a special interest of yours? You must be "smart" and any bad grades you get are because you're lazy.

if i ever interacted with you and it was awkward just know im sorry and painfully aware that sometimes i come off like a person who is having the first conversation of their life

I basically live my life in bed when I’m not actively doing other things. That’s the only way I have the energy to do anything at all ever. When I do one of my hourish rehab classes, I’m usually flat in bed for most of the rest of that day and the entire next day, because delayed-onset fatigue is a thing my life is defined by.

It’s not remotely what people think of when they think of “pacing”, but it’s much closer to the daily reality of most people who live with fatigue disorders than the “I take a break for half an hour then I’m fine to go on” people picture when they hear the phrase.

I have heard the word “pacing” at almost every medical appointment I have ever mentioned fatigue at, and never yet had the slightest advice on doing it. Not even the ongoing CBT and Mindfulness websites recommendations I get if I ever mention low mood etc. The term is applied as a panacea by people who have zero understanding of what “pacing” is, how to achieve it, or what it actually means in the context of most fatigue disorders. Or how much pushback most people with those disorders will have when actually trying to implement it, because most people, including healthcare professionals, parse resting as “not trying”.

For people with fatigue disorders, pacing is *radical* in its effects on capacity. It lets you actually have some life, which is the big thing fatigue disorders feel as if they take from you. But we are stuck figuring it out for ourselves against enormous pushback.

it's funny that people act like disabled people are such a downer and negative and pessimistic for acknowledging their health conditions when we have to be the most optimistic suckers on earth to repeatedly go to drs with the expectation of actually recieving treatment. did i say funny sorry i meant soul destroying

How do people keep replying when friends ask how are you? I hate being so negative but often it's my reality like I couldn't do a lot of things today but I'm trying and nothing has changed!! I don't want to push them away by being the one who's always sick

Does anyone else feel like they kind of have to train their able-bodied friends?

I know that sounds fucked up, but y'all know what I mean. Teaching them things like "slow down" and how to let me set the pace when we're walking, or how and when to offer help, or a HUGE pet peeve of mine: taking the ramp with me instead of splitting off to take the stairs.

I know they're not dogs, but y'all gotta admit that they do take some training.

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.

you know as disabled people it's actually pretty scary that you can't trust your doctors. like people who have medical trauma or distrust or dislike doctors and nurses aren't doing it for fun. we need these guys to help with our lives. we need healthcare to stay alive or to stop from getting worse, or to function at all. but often when you're dismissed and not communicated with you're left floundering and often have to make decisions yourself without that specialist knowledge. sometimes doctors know less than you about your disability anyway. sometimes they're wrong and give you advice that's detrimental to what you need or want, and you kinda have to just trust that the next guy is also not wrong. i think we're pretty lucky if we can find other people with our condition who are well researched in it. but i still think that uncertainty is something that disabled people shouldn't have to navigate

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.