skele-tics

[skele-tics]

Having trust issues and trying to go to a new therapist about it is so funny because I don’t trust them enough to open up about why I have trust issues but I’m literally there because I have trust issues so it’s just an awkward session dancing around the topic

#trust issues #yeah that therapist didn’t last long before she recommended me to go somewhere else

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you ever get surprised by your own recurring issues. like come on man. I thought we were past this.

#me everytime I tic

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the need to bark is so strong (i have tourettes)

#tourettes

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Having a bfrb is weird because you'll be sad and then your brain will go "what if we pulled out all of our hair?" as if it was the most normal thing ever

#bfrb #trichotillomania

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"don't let your disability stop you from reaching your goals!" i have no choice but to let my disability put obstacles between me and my goals, you think i just pick and choose when i can/can't do something? it's the literal definition of a disability, it disables you from doing things. how hard is that to understand?

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Hanging around people without OCD and relaxing that “oh shit I really do have a problem”

#OCD #literally feels like common sense to me #but other people are so unbothered by the same things #I thought I had normal reactions but apparently not

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The disabled tax is so real. I just spent 17 fucking euros to do my laundry because my washing machine broke and I can’t physically hand wash my stuff. This was the closest place to where I live and I still had to take a taxi back because I couldn’t physically lift my laundry to take public transit back

#disabled #disability #chronically ill

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Sometimes self-care is, actually, NOT getting onto the computer and little treats and watching youtube videos. Sometimes those things are self-care, but sometimes they're also avoidant behaviors.

Sometimes self care is waking up and just. Fucking getting in the car. And driving to the bank. And the store. And buying the cat litter. And changing the cat boxes you've been avoiding because your brains been stuck in a hole. And picking up the trash you've been piling up. And getting a load into the wash. And mowing the lawn before the village council sends you a formal complaint and potential-fines warning.

Like its hard and annoying to do because it sucks. It sucks so much. But if I don't start working on this pile of bullshit I've let build up because it stinks and i was stuck in deer-in-headlights mode, I risk letting it turn into fuckery. I do not have the patience for fuckery that I once - foolishly! - thought I had.

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Currently pretending like I don’t feel terrible because I had already scheduled a day trip for myself. I’d skip it if I spent less money on it but unfortunately I did not. Let’s hope I don’t have pre-syncope episodes in this random town

#pots syndrome #chronic illness #chronically ill #I’ve been trying to consume so much salt before I leave #unfortunately I still feel terrible

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the true adulthood experience is popping something in your body unexpectedly when you move and immediately freezing for a moment to evaluate if you're fucked or not

#helpful things

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Just got paired with someone else with Tourette’s for a group project. Surely this nothing will go wrong with this

#tourettes #actually tourettic #both my professor and the rest of my class don’t know I have Tourette’s #which makes this an interesting situation #we’re probably gonna bounce off of each other so bad

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Dumbest fucking ailment is being sensitive to barometric pressure. Like why do I have to feel like shit when it rains sometimes???? Like there is absolutely no reason for this

#chronically ill #chronic illness

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Contamination OCD not as in I think everything has germs but as in I think every chemical will slowly kill me and I therefore can’t touch it. But I also have some germ continuation ocd but because of the chemical contamination ocd I can’t clean things to fix things for that one

#I’m in a constant state of ahhhhh #I feel so bad for letting my roommate clean everything #but I literally can’t handle it #ocd

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Chronic pain things is going to grab your pain meds from your bag and finding two unopened bottles ontop of the opened one you already had in there

#at least I can say I’m prepared? #chronic pain #chronically ill #disabled

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At some point I'm going to post a whole hygiene schedule but for now I'm going to talk about showering as someone who has POTS and feels real passy outie when I shower. If you get dizzy or tired or painful when you shower some of these things might help you.

Also, I absolutely don't do all of these things. Some of them are suggested by other chronically ill friends. Some of them I only do on my really bad days. Think of it as a buffet with lots of options to choose from. Shower more often if you can do so comfortably, skip accommodations for symptoms you don't have. Build your own plan!

I shower in two parts per cycle. One focusing on the body and one focusing on my hair. Trying to do both is too much for me at once. When I do my haircare shower I just focus on cleaning areas that need it and don't worry about scrubbing or exfoliating or anything else. When I do my body care shower I wear a shower cap or put my hair up in a clip.

I know loads of people talk about getting a shower chair. You should totally do that. I'm a big hypocrite though because I don't have one. That's because I just sit directly on the floor of the shower. If you feel like your shower is too gross to do that in that's fine (with my old roommate I had my wife help me clean the tub first since it had to be done every week anyway but I know that's not feasible for everyone). We just keep the shower clean enough and it's fine. If you're ever showering at someone else's house the floor is totally an option. I've done it in tub showers and in stall showers and in fancy walk in showers. I've done it in showers with handheld showerheads and fixed ones. It's not always ideal but it's fine. Probably at some point I should get this little $30 shower stool. If you are living in a dorm or somewhere with a communal shower, there's a folding one for like $40. If you don't like the look of medical shower stools there are pretty bamboo ones for like $50. I had a teak one with a caddy attached in college.

Speaking of handheld showerheads, get one. The cheap one is like $8 at lowes in the US and has 4/5 stars and claims to be easy to install. The one I bought at my old apartment was $60 and it has a massage setting and both a top and handheld part and was easy to install. It's currently sitting in the closet for if/when we move again because my new apartment had the same one already installed. You also do need the plastic tape stuff so it doesn't leak (apparently its called plumbers tape). There's also a like $15 suction cup thingie to mount it low enough to reach while sitting on the floor, or you can try to wrap it around the tub tap awkwardly to hold it in place like I do (don't do that. just get the suction cup thing). If you rent, just keep the original shower head and swap it back when you move out. If you live in a dorm or something and really can't swap it, get a large plastic cup to use.

Also if you're worried about falling/slipping, #1. Sitting helps with that. #2. If you have the space for it, even if you don't normally use a walker, a folding walker can act as a moveable grab bar for getting yourself out of the shower. #3. Grippy shower stickers come in cute shapes and the suction cup mats suck ass so you might as well get some little shishies for the bottom of your shower. #4. If you live with someone else and you already use a smart watch for heart rate tracking, you can set many of them up with fall alerts and/or an emergency contact and/or a loud alarm you can tap. You can also get a personal alarm (marketed for self defence) and hang it somewhere within reach of the floor (look for the 'weatherproof' ones). I usually just shower when my wife is in the next room, leave the bathroom door fully open, and hope I can scream loud enough. Plus they come check on me if I'm in for too long.

Before you shower you should set up your post-shower resting space. I like to have a beverage (with a salt supplement) a small snack, my pjs, socks, underwear, lotion, a hair wrap, an extra towel, and my heating blanket ready with the heating blanket turned on to preheat. If you need ice packs, get them out and stick them in a small cooler bag or lunchbox until you're done. Just collect everything to one space and avoid extra moving around the house after showering. Keep everything ready in a caddy or a tote bag if you need to.

I also recommend a large terrycloth robe instead of a towel for after the shower so you don't have to put any energy into drying off or getting dressed right after.

Make sure all the products you need are at close hand. Put your shower stool in place if you use one. If you do any kind of pre-shampoo or need to take your hair out of a protective style on hair wash day do this while sitting down. Either have a stool in the bathroom or do this at your desk or bed or wherever else is convenient. Store these products there. If you have POTS you should have a pre-shower salt and hydration. If you have pain issues you should take your appropriate medications. If you get tired you should have a little rest first.

If you have POTS, make the temperature lukewarm. Like you should not be freezing yourself out but it absolutely should not be steaming hot. If you have no POTS but do have pain, you should go cold or very warm depending on what will help most (hot for tightness, cold for inflammation - usually). If you have reynauds go for toasty warm. etc.

Take your handheld showerhead off the holder so you can reach it and sit your ass down. Past this point the mechanics of showering are pretty much normal. I lean my head over into my lap to wash my hair when I'm feeling real potsy so I'm not putting my arms above my heart.

The very last thing I do before I leave the shower is wash the part of my body I was sitting on (either my butt or my shins depending on if I sit-sit or kneel). Then I turn the water off and immediately wrap myself in a large bath towel or robe and wobble to my post-shower spot. My temperature de-regulates like crazy after I shower so I need to wrap myself in warm and be horizontal for an hour or so. I flip my hair up so I'm not lying directly on it and put a towel on my pillow so it doesn't get soggy, but when I have the energy to I'll wrap my hair up in a tee shirt or a scarf to dry a little and then let it air dry once I can manage to prop myself up again. I put my pyjamas on piece by piece as I get the energy to (button-up pyjama tops may be easier than over-the-head) and apply lotion bit by bit as I warm up and can move and sit up and such. Just try to take everything as easy as possible.

I think the last thing I want to say is just don't push yourself. There's lots of ways to take care of your hygiene. Showering isn't the be-all-end-all of keeping clean, and if you can only do it sporadically, that's fine. When you can shower, make it as easy as you can on yourself. And forget about the 'everything shower.' If you prefer to shower every day and just wash a different part of your body each time that's fine. If you just want to wash certain parts, that's fine. If you want to alternate back and forth between shower types, that's okay too. If you feel better when you shower every day, then at least make it easy on yourself. Do what you need to do.

#chronic illness #disabled #disabled hygiene

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When other people say they’re dizzy, they mean ‘phew! My equilibrium is a bit off! In a just a few moments I’ll be fine!’

When I say I’m dizzy, I mean something very different.

I mean that I can see black spots in my vision, and I can’t tell if this is going to be the time I pass out.

It means that the world is swimming underneath my feet, stretching and distorting like an obstacle course even when it’s just a straight, flat path.

It means there’s so much pressure in my head and not nearly enough.

It means that I can feel my heart speed up and beat harder, trying to adjust to the new gravity, just because I’ve shifted slightly.

It means I can feel the nausea rising in my stomach and the bile come up my throat.

It means that walking is a challenge. Getting a snack is a challenge, going to the bathroom is a challenge. Sitting up is a challenge.

So, when I say I’m dizzy, I’m trying to dumb it down so that you can understand a fraction of what I’m feeling. Not that I’m not feeling it. On good days, it’s a hindrance. On bad days it stops me doing anything. Stop telling me that ‘just being dizzy’ doesn’t make me ‘that disabled’. You barely know the half of it.

#potsie #pots syndrome #chronic illness #disabled #literally so accurate #like I use the easy descriptor but it is in no way accurate of how I actually feel

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one thing about not having a diagnosis is that when people ask me “is it pots?” i can’t tell them yes but i also can’t tell them no. because i don’t have a yes. but i certainly don’t have a no. i have a “you’re kind of young.” and a “have you tried exercising?”

so…i don’t know, is it pots? great question!

#pots #pots syndrome #chronic illness #disabled