To Me, The Universal Trust In Doctors From People Who Haven't Experienced Medical Mistreatment/neglect

Sometimes it feels like i am already dead. Not part of anyones life anymore. Locked up in my flat. Just a liability for my parents who dont even like me. Like a ghost who is damned to haunt this room, but still has pain and wifi.

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.

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.

I've been worried ever since I was born

me: ive been bedbound for six months

dr: have u tried getting up?

me:

dr: being upright is good for u to prevent deconditioning

me:

dr:

me: it was in fact the first thing i tried

New favourite thing to do is to remind people of how much they hated lockdown when they say they wish they could stay home as much as I do.

Like no you dont you were miserable when you were forced to stay home all day everyday for the good of your health. Thats my entire existence as a disabled person so pack it in.

Why why why do medical professionals so insistently push people with chronic pain to “just push through it.”

I’m in a flare right now and my left hip has been hurting no stop for almost three weeks. My physical therapist knows this and I reminded her last time I saw her. So tell me why she proceeded to have me do a bunch of jumping exercises landing with all my weight on my left leg.

I told her the exercises were hurting a lot and she told me to just work through it. Well it’s been half a week and ever since that appointment my hip has hurt even more than before.

I won't lie gang... this past month I have gone from using a cane to get around outside to only using my wheelchair- propelled by someone else- to get from my bedroom to the bathroom. needless to say my condition is progressing at a really steady rate and things are getting scary. I am unable to make myself food or even hold my phone and type for too long. However as this is all so new and happening over the christmas/new year period I am not getting adequate assistanc or healthcare as I still need to APPLY FOR ASSISTANCE to help me APPLY FOR ASSISTANCE which could overall take 6+ months. Despite people pushing me to remain hopefull, I can really only see myself getting worse from here. My resilience can only keep me awake for so long. What I really want to ask, specifically the me/cfs community but the wider chronic illness community too, is for help arranging a sort of "living will" for however long I'll be alive but not able to do very much. my will for what happens to the life that I used to have before it all got worse - and how I would like to be taken care of. Are there any templates out there that I can send to my carers? If not that, some advice or words of support anybody can give?

You should be able to say “don’t touch me” to anyone ever in any context and not have it be considered in the realm of surprising or insulting imho if we ever needed to normalize something it’s this

who up experiencing emotions they can talk to no one about