stop ignoring us. wear a mask.

-anti whiteness isnt real

-misandry isnt real

-Misogyblanc isnt real

-Brown men get paid more than brown women

-transandrophobia isnt real

-trans men are paid more than trans women

Cloven-feathered Dove (Drepanoptila holosericea), family Columbidae, endemic to New Caledonia

Biological sex isn’t binary

[ID: A quare divided vertically in two sides, each side contains two blue uppercase letters in the shape of chromosomes. The left side has the letters “XX”, and the right has the letters “XY”. The whole square is crossed out with a red X. END ID]

ID: Three AAC symbols of a yellow, baffled looking person in a red shirt. In the first they are pointing at a red square. In the second they are gesturing at a red circle. In the fourth they are holding out both hands, palm up. End ID.

What the fuck is that?

What the fuck is this?

Similar to how there is not one size fits all situations with mobility aids, I do not think there is one form of AAC that will fit every situation for most people.

I use two AAC apps on two separate devices to communicate, depending on My needs that day. I also do not use purely high tech, I also use low tech and no tech AAC, again depending on needs.

Lots of people think if you give someone an AAC tablet it can used be always. But that is simply not true! You cannot use a tablet in water, for example.

Drinking:

I use normal drinking bottles (mine are the plastic ones from sigg) when I'm doing okay or for stuff that has sugar.

I also have a bottle with a hose (?) (like those things you use for hiking where the bag with water is in your backpack and you can drink from the hose without having to get the bottle). This is really good cause I can drink relatively independently even with relatively severe muscle weakness.

Stuff with soup like consistency:

I drink protein shake from a shaker. It's similar to the bottles and I can drink it on the side and on the back.

Eating soup with a spoon while lying down doesn't work too well...

Eating:

I have a bedside table that can be on the same height as my adjustable bed. Most of the time I eat while lying on my side. Sometimes I put the plate on my chest, when I can only lie on my back. Rarely, someone needs to feed me.

Doing stuff:

I mostly do stuff on my phone (like drawing, writing, organising etc.). I also have a laptop in a laptop holder that's attached to my bed. Friends mostly sit/lie on my bed. Knitting is pretty easy to do while lying in bed.

I kinda have a long post about creative stuff and so on as a bedbound person and there is another link to the bedbound master list somewhere in there.

Decided to look into it and as a warning to all of us I will let you know they absolutely can, for the same reasons controllers for consoles start to. General use over time can cause it, build up of debris and things like that. Pulling it too hard in one direction can also cause it. You should be cleaning your wheelchair anyway because it’s what is sanitary and helps the equipment last longer, but definitely pay some extra attention to the base of the joystick so nothing gets in the way of the sensors.

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.

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.

ID: digital drawing of a dog in a powerchair. In the background, there is the blurred disability pride flag. /End ID.

Happy disability pride month!