Jax or Luna

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.

We still need help with getting $59 together for our storage unit rent

I have been disabled since birth. I've known and been friends with other disabled people all My life. When I see disabled people, instead of thinking, "oh no, how horrible," I think, "oh, My friends!". Seeing visibly different people I don't think, "oh bad, what happened," I think, "oh, they're like Me!".

I LOVE YOU BLACK TRANSFEMS

I LOVE YOU BLACK INTERSEX PEOPLE

I LOVE YOU BLACK NON-BINARY PEOPLE

I LOVE YOU BLACK DISABLED PEOPLE

I LOVE YOU BLACK PEOPLE OF THE LGBTQIA+ COMMUNITY

PLEASE SURVIVE

even if it’s hard even if there are many racist fucks trying to prevent it

PLEASE THRIVE

even when the whites are trying to silence you

YOU MATTER

when i wake up i take my morning meds, i am in a dark and quiet room. i lie in bed until i feel well enough to get to the bathroom with the help of a mobility aid. i don’t turn on the light in there. if i feel well enough i will grab something to eat that doesn’t require preparation. i got back to my bed.

if i feel well enough, i can have music playing on low volume, usually meditation music, skyrim ambience or other music im very familiar with. i am laying in bed, in a dark, often quiet room.

i don’t eat lunch, it takes too much energy. i lay in bed, in a dark & quiet room. i scroll social media, i have colour filters and other accessibility features on my phone so i can tolerate the screen. i take my mid day meds.

if i feel well enough, i grab something from the kitchen to eat for dinner, something that requires little to no preparation. if im feeling more well than usual i can turn on the tv in the bedroom to play my favourite show; the volume and brightness are very low, but most of the time i still can’t look at the screen, but i can listen. the accessibility features aren’t as good as on my phone.

i take my night meds, i get to the bathroom if i can. i am scrolling social media if i can. otherwise ill just try to sleep.

sometimes i have good days, and ill overdo it & get PEM. sometimes i dont do anything, and still get PEM.

Wow, the radfems found my post specifically tagged “transandrophobia” and “intersexism” and “transmisogyny” and “exorsexism”, almost as if they’re specifically following those tags… surely not, right?

Go watch the quest for the rainbow bagel, if it's still on YouTube. The guy has to wait as elevator after elevator after elevator is too full for him. Ultimately, he crawls down the stairs and has his companions carry his wheelchair for him. This is difficult, dangerous, and could break his chair- breaking his legs, essentially.

All because people who can walk were too selfish to let him on.

You can squeeze into a packed elevator. Bulky aid users can't. So get out, encourage others to get out, and let them in. You just have to say, "oh, you definitely can't go down the stairs, but the elevator is too full for you to squeeze in. I'll get out to make room for you and take the next one." It will pressure others to help.

This also applies to bathrooms, by the way. "Oh, you need the accessible stall. I can use any stall. Why don't you go ahead of me so that you can use it when it's available."