A blog dedicated to my CFS/ME posting

pressure sores from being in bed all day - to prevent these, change position minimum every 2hrs if possible, and use pillows to support your positions (find visual examples online). you’re especially at risk of pressure sores if you use continence products, so make sure to use a barrier cream and change as soon as possible when soiled.

contractures, especially in the ankles, from being immobile in bed - these can be minimised by doing ankle flexibility exercises, but ONLY if that would be within your energy envelope. otherwise just try to vary your ankle/foot positions. support with pillows if needed.

tinnitus and ear infections from having to wear earplugs so much - i have no advice for this

vitamin d deficiency from being indoors in the dark all the time - supplements and foods rich in vit d can help.

deep vein thrombosis aka blood clots in the legs from immobility - this is uncommon but it’s an emergency if it ever occurs. compression socks can reduce your risk if you can tolerate wearing them, and movement also helps lower the risk, but again, only within your energy envelope.

muscle atrophy - your legs and arms may start to look like sticks after becoming bedbound. unfortunately, as long as exercise is unsafe for you, this is impossible to fix, so it’s something we have to accept, as pushing ourselves is much more dangerous than deconditioning.

vit and mineral deficiencies from dietary restrictions - opt for a healthy diet, supplementation, and regular blood tests to stay on top of deficiencies

dehydration from being unable to sit up to drink - there are sporty contraptions meant for backpackers that let you drink lying down. some water bottles with sports caps also work, i use refilled lucozade bottles for all my water. if you’re too weak to swallow for longer than a day, it’s time to call a doc to see if they can give iv hydration.

dehydration from sleeping a very long time - if you sleep 16+ hours, especially if it happens regularly, you’re probably waking up dehydrated. try to drink water when you wake.

I'm very thin/ atrophied myself, and that definitely puts you at a greater risk. Aside from repositioning/ having a caregiver reposition you at least every two hours, there is also an aid called an alternating pressure mattress that I personally use. It's a little air mattress that you put on top of your regular mattress that attaches to an electric pump. Mine was about fifty US dollars. It has little air bubbles/ pocket things within it. The air pockets inflate and deflate, alternating between which row, every five minutes or so. My dad calls it my breathing bed for this reason, heh. This helps your weight from settling in one place and therefore keeps pressure sores at bay! I didn't explain it super super well, but EquipMeOT sure does.

housebound doesn’t mean “cannot leave the house under any circumstances”, but in fact means “can leave the house, on the requirement of needing assistance from either a mobility aid to avoid worsening symptoms, or with the help of another person, and leaving is going to take immense effort, exhaust me, and take me a long time recover from”.

you’ve not been moving around? FATIGUE!

you’ve been standing? FATIGUE!

you’ve been sitting? FATIGUE!

you are simply conscious? FATIGUE!

you’re sad? FATIGUE!

you’re apathetic? FATIGUE!

have you considered that this kind of post is intended to remind folks who feel that way, even if these are facts of their life, that there is still beauty and value in living it?

maybe it's even to remind others, maybe you, that this is a reality for some people, and that those lives can still be beautiful and valuable and worthwhile?

talk abt yr own experience & let other ppl talk abt theirs. jesus henry fucken christ. "im disabled and its not that hard for me, sooo you people must just be depressed" is also ableism dawgs.

that type of post is a response to THIS type of energy we're constantly faced with in the world. that if you cant find a way around ur disability, then your life is meaningless, or depressing. "but you can just find a new way to do the same things!" i quite literally cannot, and you are the one equating the ability to engage with the same things with a meaningful life, not me. "but your life isnt DOOMED, thats depressing!" i am unavoidably going to live a life of pain, in which i cannot engage with anything i would meaningfully like to, in any way. im not disconnected from that meaningful desire, i just cannot access engagement with it. i am accepting that. im not 'giving up',, i LITERALLY CANNOT DO THAT THING NO MATTER HOW I APPROACH IT. i am accepting myself outside of the cult of productivity. YOU are depressed by that. not my fucken problem.

and if you can work hard or creatively to engage with things others do, if that is an OPTION for you, im so happy for you and i hope you do. i just need you to understand that that's not the story for everybody, and to quit telling people who say they cannot do or access or experience something, that they're wrong, or giving up, or not trying right, or depressing. YOU are making it depressing.

and yes, the online disability community has a lot of people talking like this, and maybe that's not what folks with lower support needs disabilities, or disabilities that dont affect them in such ways, always need. that is because, for folks who are affected in those ways, the internet is generally the *only* space they can access to find community or camaraderie. for a lot of those people, managing their disability literally takes up their entire day, every day. so that's what they talk about online too.

if you want different spaces, make them. dont try to tell ppl with more severe disabilities than you to change the space theyve created because it depresses you.

🧵 Another excellent blog by Fred Rossi who is well worth following

"The Patient Who Isn’t Supposed to Exist"

Nominally on the recent, controversial WIRED article but the points are pretty general.