#everyday disability

[softness-and-shattering]

Lets call this a cry for hair help bc I swear its curlier than it used to be and I dont kmow what Im doing.

Firstly Im disabled and poor. I cant keep track of or follow a fifteen step process with ten different products. Probably 3 products 4 steps max is my limit.

Im at like a 2c/3a and quite thin. The longest is about ear length but really frizzy so on top its more like a wispy seaweed halo.

I wash twice condition once, 2-3 times a week if Im feeling up to it, to like once a fortnight when Im not.

I know about not drying w towel movement, and I know about satin pillowcases and hair bonnets, im just struggling with the amount of choice because they all look the same, is pillowcase or bonnet better or both, what do you mean target sells five different types of satin pillowcases WHATS THE DIFFERENCE JUST GIVE ME *SOMETHING* THAT WORKS. Yeah thats where Im at thats inspired this rn 😅.I know seaweed puff ball sounds charming but thats me outting on rose coloured glasses, I would like to look like a neat, put together, ideally queer human. (Dye would be great also but thats step 2).

I know I can go to a salon but thats money and effort and mobility which are all in short supply. I suppose I could try get back into ticheling in more of a masc way? I dont think kippot as traditionalnare davka protective.

Yeah uh, help please? Ideally if youre also curly and disabled, but ill take any simple achievable advice that doesnt involve tons of shelling out for products especially....not perishables bc its not food, usables? Replacables?

I just want hair look nice again.

[s-ccaam-era-crepe]

i think everyone who's ever had migraines should be financially compensated forever btw

[chronicallydragons]

Ah yes, my favorite chronic illness game: is this normal, is this new, or am I dying?

[celestialvoid-fanfiction]

There is one thing from Star Trek: Discovery that sticks with me. It's the one crewmember in a wheelchair.

Why? Because in a future where almost any medical condition is curable, being disabled or using a wheelchair isn't seen as something that needs to be fixed.

Does he have a name or a backstory? No. But unlike Pike (ToS), Emory Erickson (Enterprise), or Admiral Jameson (Next Generation), he's not in the wheelchair because of some tragic accident or illness that left them scarred, paralysed, and/or disabled. He's not made the centre of a story of struggle and pity like Melora Pazlar (Deep Space 9).

There's no story of him trying or needing to be "fixed", "healed" or "cured", there's no story of him trying to adapt, there's no story of him getting in the way or being a burden. He's not seen as a tragic victim. He's not seen as unfit for duty or disabled.

He's just a guy in a wheelchair and a member of the crew.

[unfilteredrealities]

Hey Google , how to not beat yourself up for being chronically ill and how to still be compassionate with yourself when it’s very hard to do so? 😭

[worldsbestkate]

First tumblr post!!! Wanted to add to the hatsune miku culture trend with my own!!

[pansyfemme]

my third ‘burst out crying for a reason i am unable to put into words’ event in two days

[a-walking-fandom-reference]

why do so many non-chronically ill people not comprehend that chronically ill means exactly what it says!! an illness that is constant, continuing for a long time, always present.

so yes that does mean it is always affecting me, yes i am still sick/feel bad, yes i am sick/feel bad all the time

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom I know many people with severe chronic illness that wish they had enough leftover energy to even try an activity that health-privileged people think of as "lazy". Never, ever imagine that person battling illness is "lazy". They are working overtime just to survive. emojis: black heart, blue heart, masked, spoon 5:50 PM · Aug 12, 2024

x.com/SpaceDocMom/status/1823039281616531579

[samd1o1]

And what if I said Infinite is chronic pain representation? What then?

[im-out-of-it]

[everdeansystem]

Some days it’s easier to just lay in bed and forget the world exists. Letting the covers embrace you in their warm embrace. Feeling the comfort and deep warmth of the bed envelop you so that you never have to leave. Follow this feeling of safety with a dab or a joint to allow my pain to ease and subside. So I can enjoy the leisure and comfort in this place.

This is my safe space. And it’s hard for me to leave it even on my best days.

[alexei-home-fromthewar-at-last]

IF ONE MORE THING GOES WRONG WITH MY BODY, I’M GONNA—

*another thing goes wrong with my body*

[astersghost]

Having chronic conditions is so stupid like what do you mean I currently have debilitating pain in my toes. Granted my hip, fingers, lower back, knees, shoulder, and elbow also hurt a ridiculous amount too atm but my fucking toes ??? What did they do???

[unfilteredrealities]

Pacing Tactics

● Prioritize your activities and delay, delegate or eliminate non-essential items.

● Minimize sustained physical or cognitive exertion by dividing and spreading out your activities into small segments with planned rest periods in between. For moderate to severely ill patients, even normal activities of daily living (eating, bathing, dressing) should be modified to avoid triggering PEM.

● Immediately stop and rest if you start to feel dizzy or short-of-breath, notice your heart rate increasing, or sense other PEM warning signs that might be unique to you. Don’t try to “push through” when you feel sick or tired. Although the concept is lauded in today’s society, doing so with ME/CFS will only exacerbate your symptoms and potentially worsen your illness.

● Schedule rest time (even if you don’t think you need it) to relax your body and allow for potential healing. When anticipating the need for extra energy (e.g. trip to the doctor, night out with friends, special occasion), plan extended rest time before and after the event.

● Learn to recognize emotional PEM triggers and take steps to avoid or minimize their impact. If a stressful situation is primarily beyond your control (e.g. the actions of others, world events, lack of understanding about this disease) try to take the emotion out of your thought process. Worrying or holding on to anger when you can’t do anything about a situation rarely accomplishes anything for anyone, but if you’re living with ME/CFS, it can use up your energy and cause you harm.

● Difficult as it may be, avoid the temptation to do too much when you’re feeling a bit better. It is rarely worth the consequences when living with ME/CFS.

[ethaninthewilde]

wanted to share something good!!!

In early 2022 I moved to Sydney from Perth at 16 to get away from an abusive family and have a fresh start. Less than 2 months later I lost my job because I started having seizures, and it got to the point where I was having ambulances called almost every time I left the house. I had to stop studying, I was deemed medically unfit to work, and I became homeless as a result. I was rejected from almost every youth crisis organisation in the city because my seizures made me an "insurance liability" or they just didn't know how to or didn't want to deal with it; I lived in the one youth refuge that did accept for me 3 weeks before they told me I had to leave because I was becoming more and more wheelchair-reliant and they didn't "have capacity to accomodate that" (despite initially telling me that my disabilities were not an issue and I could stay for at least 3 months), and I became homeless again. My NDIS was rejected. I finally got a room in a sharehouse with 8 other people in October last year, but my room was up 2 flights of stairs and I was having to physically drag myself up and down everytime I needed the kitchen, the bathroom, anything. I was watched almost every time and it was humiliating and horrible and I hated it but at least I had somewhere to sleep.

Yesterday I picked up the keys to my own semi-accessible apartment. In just over 2 weeks I will be 3 years clean of self harm. My seizures appear to be decreasing and I've reenrolled in uni (half-time). Next week I have my final assessment for my DSP (australian verson of SSDI) application and then that should come through soon.

I am so proud of myself. I don't want to jinx it, but I feel like I've finally gotten through it. I can breathe now. I did this myself, and no one can take that from me. Reconciling where I am right now with younger me who genuinely didn't think I'd make it past age 14 has me in tears.