I hate the fatigue sore throat.
folks with me/cfs what do you do about the sore throat
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@wheelchairtetris
I hate the fatigue sore throat.
folks with me/cfs what do you do about the sore throat
I hate the fatigue sore throat.
Every time I have to think about seeking medical care I feel like I am taking psychic damage. I want to scream.
another reason I won't wear my hearing aids: the world is already to goddamn loud.
have a new healthcare plan -> only way to access services is through the app -> app needs 2 factor authentication -> one time text code never comes through -> cannot log in to the app -> cannot access services
oh & the (fully covered) virtual visit option specifically doesn't let you get medication prescribed & the coverage for an in person GP visit is Hardly Anything
worst part of my headache #myheadache is that it turns me into an emotional easily frustrated idiot. thoughts hurt.
driven mad by how patients with severe ME are so rarely warned or protected from some of the most obvious consequences of ME bc doctors just don’t gaf about us. so here’s an awareness post. side effects of ME to look out for:
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.
post over!
I will shout about pressure sore risk from! The! Rooftops!! A red spot that doesn’t fade is a grade 1 pressure sore!!!
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.
Positioning pillows are also fabulous :) I'm a pregnancy pillow person myself but use what works best for you !
as much as the bumps and vibrations suck as a wheelchair user, I do feel very Present and Grounded when going over different surfaces. like I get an understanding of the world under me that I wouldn't if I was standing. I like the connection I feel. (I do not like the pain / when vibrations set off nerve pain in my legs but. I will try to find positives regardless)
have a new healthcare plan -> only way to access services is through the app -> app needs 2 factor authentication -> one time text code never comes through -> cannot log in to the app -> cannot access services
Reblog and put in the tags what your blog title (not URL!) is a reference to.
folks have been asking about Rivets and how they can support it. i have a patreon for the comic 🍎🐍 reblog or comment or share to help spread visibility 🙏
this story is my love letter to the forgotten workers of World War II, and a chance to see a man with dwarfism and a transmasc person as romantic leads. help me make this story happen ✨🤌 (italian hands)
Please go send @iguanadonis some love!! I am so excited to read this piece!! Remember with things like Patreon every Little bit helps!!
I have a headache because I'm a bad person
I miss having an accessible bathroom :/
"erm actually this thing you said you experienced, where doctors treated you wrong, is illegal!!" Do you understand that medical malpractice is a real thing and not just a plot device from House MD. You get that, right. Right??
how manual wheelchair users move (explainer for non-users)
frequently when i’m out and about with someone walking, they can’t anticipate what path i will take and therefore they’re in my way pretty frequently. this is fine! i can politely ask them to step to the side. but it makes me think about how little non-wheelchair users understand the way wheelchair users move. as someone who used to walk everywhere, it was an adjustment period for me to figure out how to navigate the world in a chair. here are some things that didn’t occur to me so that you don’t cut off your friend right as they’re building momentum to go up a ramp 😆
for context, i use an active manual chair. the world is very different in a power chair. even among active manual chair users, there is a huge diversity in physicality and strategies for getting around. this is a general guide that i think will apply to most manual wheelchair users. i’m starting super basic and getting more complicated as i go.
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1. manual wheelchairs are a momentum game. it is very easy to maintain speed and direction. but speeding up, slowing down, or turning, is hard. one thing this affects is if we’re on a wavy sidewalk or other twisty-turny walkway, that is a pain in the ass and i am taking as straight a path as i can.
2. wheelchair users also have to pay attention to the slope and condition of the pavement, so our path somewhere will be different than yours, even if we’re taking the same route to the same place. for example, i usually have to go down slopes straight, not diagonally, to avoid tipping over sideways. one area this affects is crosswalks. many intersections have one curb cut for both roads you could cross, which means i will go down curb cuts to a crosswalk as if i am aiming for the middle of the intersection.
your path in orange, mine in blue. to you it seems indirect, but to me it’s the path of least resistance.
i also will be building speed in the second half of the crosswalk. this is a much easier way to tackle a ramp. if i approach with momentum, i won’t have to drag myself up the slope once i get to it.
3. building momentum and maintaining it is only half of the job. the other half is stopping. manual wheelchairs cannot stop on a dime if they’re moving with any kind of speed. if i tried to stop immediately when going downhill, i would fly out of the chair. so don’t walk right into the path of a wheelchair in motion and then stop! i will have to turn to the side very quickly and hope i don’t tip. i can’t tell you how often parents pushing strollers will stop their stroller directly in my path and then get offended when i am alarmed and turn sharply to avoid hitting their child. from their perspective, i was being careless and going “too fast.” in reality, normal walking speed takes a few feet to slow down from and stop.
4. in terms of slope. see this street in san francisco?
i can’t go down this street, it’s way too steep. i would give myself friction burns on my palms trying to control my speed. if i was in a situation where there was no avoiding this street, like in an emergency, i would be breaking my straight-slope rule and zig-zagging in the middle of the road.
this would require several zig-zags back and forth, more than the four that i drew. i also could not go up this road other than with this method. up or down, i risk tipping over sideways if i’m not careful.
4. in a similar vein, consider terrain. slopes with grass or carpet take huge amounts of energy to get up. this grassy hill isn’t insurmountable, but it would take me like thirty minutes to get up there. honestly i would probably go backwards, because it’s easier to pull yourself up a slope than push yourself.
other types of terrain can be completely immobilizing, though. this decorative gravel pathway is beautiful, and inaccessible to me. my casters (front wheels) simply will not go through that.
5. in terms of walkways and obstacles. if there’s a deep gap in the pavement lined up the way i’m going, and it’s, say, an inch wide, that is an obstacle for me. my casters are one inch wide, and my back wheels are an inch and a half. i’ll get stuck in it like a train on a track.
i have to straddle this, even if it means being too close to the middle of the sidewalk and preventing us from walking side by side.
similarly, if a crack is greater than an inch high, i’m gonna wheelie over it. at two inches, i have to. a wheelie may require a change in speed, either faster or slower depending on the person.
i have 4 inch casters, so a lip as little as 2 inches will stop me in my tracks. a lip as little as one inch, hit with any speed, can knock my casters out of square. casters can get knocked out of alignment pretty easily depending on the chair. i’d rather not have to pull out an allen wrench and a level, so i’m gonna wheelie.
this happened when i hit about a 1.5” lip on a pavement crack when i was going downhill at maybe 3mph.
6. putting it all together. see how diagonal this crack is?
this is another situation where i have to go straight relative to the slope. because that crack is wide, it will probably also require a wheelie. if i tried to approach that straight relative to the sidewalk, my left caster would get up the slope, i’d wheelie, then my right caster would land in the crack. i have to go this way.
(also lol at the trash can blocking the curb cut)
these are just a few things to keep in mind when walking about with a wheelchair user! ofc the best strategy always is just to listen when someone asks you to move out of their way 😆 but i think being able to anticipate movement a little better will help it seem less random. feel free to ask any questions!
I ❤️ getting on a bus as a wheelchair user and the driver being so occupied by you Being A Wheelchair User that they don't charge your fare. It's like a reward.