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Source: ace-disgrace-on-the-case on tumblr
There’s something so uniquely terrifying about memory issues. I feel like my self is slipping away from me.
ace-disgrace-on-the-case - Here’s the thing I feel like a lot of folks don’t get: I’m not trying to forget what you said. Honestly, I really tried not to. I can’t control what I do and don’t remember—forgetting things just happens. It’s annoying for you, I know, but for me it’s distressing as hell and when you make a big deal out of it rather than just reminding me you make me feel ashamed. I’ll remember that, at least.
It costs you nothing to be kind to people with memory problems. Please. It’s scary enough without people treating memory lapses as a personal failing.

Quote is from this very depressing episode of Behind the Bastards BTW but don't remember if it was part one or part two.

The Deadliest Workplace Disaster in U.S. History

Hello. I wasn’t sure if I should even post here, since I haven’t been diagnosed with anything yet.

About a year ago, I started having loss of sensitivity in my fingertips and toes. Since then, it has spread to my entire body. I’ve probably lost around 80% of my sense of touch everywhere, including parts I’d really rather not lose sensation in. It has affected other things too, like my sense of taste. I can no longer taste sweetness or spiciness.

I don’t have toilet urgency until I really need to go. Nothing bad has happened so far, but it’s worrying. My sense of temperature is also inconsistent. I’ve had to turn my shower five notches hotter for it to feel the same; otherwise, it legitimately feels cold. Touch is sometimes painful; my partner will lightly touch me while shifting in bed, and it’s enough to make me wince. There are other issues as well that I don’t remember.

I’ve been trying to get diagnosed for the whole year, and it has been incredibly slow. I’ve had two MRIs, one brain scan and one spine scan. The brain scan didn’t show anything. I still haven’t heard back about the spine scan because, apparently, waiting over a month to get the MRI and then another month to get the results is normal in the UK, even for an urgent case.

Two months ago, I also started having abdominal pain bad enough to keep me up at night. They tried antacids, which did nothing. Then they prescribed amitriptyline, which is the only reason I’ve been able to sleep at all, though I still don’t sleep well. They tested my blood and stool samples. The first stool sample suggested possible inflammation, so they wanted a repeat. I did the repeat, but I still haven’t heard back about that either. I ran out of painkillers and had to spend last night without them, and will have to spend tonight without them as well, since the refill arrives tomorrow.

Then, two weeks ago, I started having shortness of breath and episodes of being winded, lightheaded, and experiencing heart palpitations even while sitting still. This has been getting worse. The episodes are becoming more frequent, and my ability to do anything is diminishing quickly. Alongside the breathing issues, I’ve been getting random stabbing pains in my sides, chest, and sometimes my back, plus a constant slight pressure on my chest.

I eventually went to A&E. They took bloods, did an ECG, checked my blood pressure, and listened with a stethoscope. They found nothing. They emailed my GP requesting a 24-hour monitor in case any heart issues only show up during an episode, but of course, I haven’t been contacted about that either.

Also, the neurologist suspects whatever I have is functional. So I don’t know whether everything is related or not, but it seems like too much of a coincidence for it not to be.

I’m going to contact both neurology and my GP to ask what is going on. This last year has been terrible for my physical and mental health, worsened by countless stressors and frustrating changes. The only positive thing recently is that I finally, after two years of putting it off, got diagnosed with ADHD combined type. I’m hopeful the help I get for that will make things at least a little easier.

Please excuse the rant, I just felt the need to express my frustration to a community that might understand me at least a little bit.

Number 1 looks like yoga with more steps.

We all know that having a chronic illness can be difficult and depressing, so this is a thread about the silly things that have happened as a result of our illnesses and disabilities.

Please keep them silly or funny, there's enough depressing stuff on Lemmy these days 🙂

This is my particular piece of stupidity 😁

About 15 years ago I was seriously ill, several weeks in hospital including a coma and a lot of rehab. In the meantime, my wife had moved us in with my mother while work was being done on our house.

When I got home from the hospital, I was excited to get back online to catch up with my friends, so picked my computer up and ran up the stairs. I got about three steps up and literally got stuck, my legs just wouldn't move.

I had to get my wife to squeeze past me on the stairs and take my computer, while I got back down, took the computer back so that she could get down, then give it back to her to put down.

Slightly embarrassing, but always makes me laugh 😁

Everyday is a negotiation with your body to not hurt. You do what you can to lessen that pain and hope for the best. At the end of the day we have little control over it.

I'm so bored of just watching shows, but I'm kind of out of ideas of what else to do when I'm tired (usually about half the day, sometimes al day). I don't even have any one super debilitating disease, but I have like a dozen small things going on that kind of rule everything out.

Hand-to-elbow tendonitis keeps me from what I used to enjoy that doesn't require a lot brain power (drawing, gaming and sewing). I know tendonitis is supposed to resolve more or less on its own, but it's been five years and I have no reason to believe it'll go away at this point.

Socializing drains me, I have to do it in small doses.

I used to run, but I have arthritis iny knees now. I swim for exercise, but that's not relaxing at all, because the pool is sensorily overstimulating. I'm actually only supposed to do low intensity exercising for cardiovascular reasons. But I put up with it because of how much it benefits my mental health.

I also have endocrine orbitopathy, and reading often makes me too aware of the pain in my eyes. I tried audiobooks, but I have ADHD and can't keep attention at all when I'm just listening to something.

I love to hike, but I'm kinda scared to get back into it because I need to be close to a bathroom, and that's kinda putting me off.

So, what do you do to unwind? For fun? Not even necessarily looking for advice, I'd just love a chat with people who have similar struggles.

This beautiful animation that was recommended to me by Robert Thomson. It deals with disability. youtube | invidious

Mirror post on my blog

I remembered this animation yesterday, when I was writing in my journal. Here's an excerpt:

I remember now, "Orgesticulanismus"... That video has 27K views, yet it is one of the most powerful and beautiful animations ever. When I watched this, I remember being quite healthy, and I was like "that must sound really tough, I can't even imagine" yet here we are, here I. Am.

Now. There are many things in my life, that I said "will never happen to me", I dismissed these things so easily, only for them to apply to me. Like I remember hearing about LGBT people, and I was like "wow, I can't even imagine" yet here I am, this my face when I realize this:

So here I am now, and I watch this animation, and I'm like wow. I relate to this so so much. These strings that bind people, A have never felt these strings. It is only when my movement became restricted, that i started to feel them. The lower strings feel like chains to me.

When I was robbed of movement, I started to feel things I've never felt before, I started to feel the tugging and pulling of these strings, it's almost like my own body is resisting movement in all of its forms, it's like it's revolting against me, asking me to stand still, and just take in the pain.

Like the man in the video says (who is the animator's father), when you lose movement, you have to reinvent it, you have to learn how to walk, how to hug, how to fix things, you have to relearn the very basics of movement.

Now, if you're still reading this, and you haven't watched it, please do!

When the "human" or (humans) break out of these strings and start dancing, it put a smile on my face. Like I had a very grim look at the first half, and I was watching how the people change, and how they try to stand up from the chair. I related to that, oh so much. I just saw a person standing up, yet the expression of that animation, carried so much information.

And so they revolt, they break the strings, "Fuck this" they say, and they start dancing, and the dancing animation is something else, my favorite part is when that baby grows up while dancing, then becomes an astronaut and stuff, that was very cool, so cool, and so wow.

I have felt that when I listen to very cathartic metal albums. Everything hurts, but I feel the need to stand up and start dancing, and I dance, and for a couple of moments, mere minutes, I don't feel the pain, I feel free. But then my neck and shoulders start to hurt for days, I do follow standard headbanging procedure, but it still hurts.

At some point they revolt against flesh itself, and we have a skeleton dancing, and the movement of that skeleton to me, when it moves, I can hear and feel the sound of bones rubbing together. Then they revolt against their material form, and just fucking, fucking, go abstract. And the dialogue of that man comes back, and it's really, really lovely.

Please give this animation love, and send it to everyone. I already had it downloaded on 2021. (That sentence doesn't feel right.)

Tldr; bought a Powerchair and it's amazing not being housebound anymore but it's frustrating how inaccessible everything is. I'm also moving into a supported living facility soon and my flat is much more accessible than where I currently live.

I bought a Powerchair the other day and it's amazing! I have actually been able to leave the house a couple of times since getting it!

I am having issues with ridiculous sloping pavements, giant potholes, and obstacles in the middle of the street that my chair can't get around but that's just my city having shit accessibility and I can't complain too much because even with those issues it's amazing not to be housebound.

I'm moving into a supported living facility soon and my new chair will be a huge help in allowing me to become more independent.

My new home has no stairs and has a wet room, which is super helpful. Unfortunately it does have a ridiculously heavy door and the dropped curb is blocked by an electric box but I have been speaking with the care company about these issues and they say they will loosen the hinge on the door, so that's something.

Hi I'm new to Lemmy hopefully I'm doing this right. I was wondering if anyone in this community could help point me in the right direction in regards to choosing a wheelchair. (I live in the UK for context)

I've finally accepted I need a wheelchair as I am currently housebound and cannot walk more than 25 meters with my crutches on a good day.

The problem is I have no clue where to even start in terms of looking into wheelchairs. I've heard getting a manual wheelchair with a power attachment is beneficial as it folds down (whereas power chairs don't) and my new apartment isn't very big.

Any wheelchair users able to help point me in the right direction?

cross-posted from: https://mander.xyz/post/36636505

cross-posted from: https://lemmy.dbzer0.com/post/51460901

I know this comic has already been posted on lemmy. But it's the only way that I feel captures my feeling, it's like I live on an unspecified timer, everyday, after that I go back to the can.

There's the constant pain, the lack of sleep and/or quality of sleep, waking up everyday like you've been run over by a train.

Then there's the extra sensitivity, and the "electricity", every time I sweat I feel an electric shock in my body. At many points, it feels like an active electric current is being run through my body, like I'm strapped to one of them electric execution chairs.

Then there are the constant brain fog/headaches, no matter what I seem to do, half of my brain is preoccupied with pain in random areas. My brain is like "Hey wassup, I know you're trying to focus,, or sleep, but your left leg is in a g o n y, because no reason really, maybe you moved too much. And so you have exceeded your uhhh free trial of leg for today."

Depression comes in play too, either because I don't go out much because of the pain, or because of the lack of sleep. And then depression fuels anxiety, and they fuel each other, and we have kick started our "mental doom engine."

Then there's the sleep. I have school coming up, it is absolutely necessary that I stick to a schedule, except that won't happen. Because the only way for me to fall asleep, is to be at that point when you're so sleep deprived that you can't keep your eyes open. I have tried at many points to use this my advantage, but it seems like this point is almost always at 5 or 6 AM.

I have abandoned traditional art, and almost anything that involves the use of arms. I can type on the keyboard pretty comfortably because it requires only my wrists and fingers, but even that starts to hurt after a while.

And lastly, it is almost treated as an invisible disability. "Your limbs don't seem to be broken/swelling", "You're not using crutches", "You're not on a wheelchair", and "Fibro my what?". I have been using sticks/staves/brooms in many situations to get up and move, and I use whatever object I can grab and get up with.

Since I grunt all the time, move slowly, use long objects all the time, I have always joked that I feel like an old person. As I'm writing this, my old person knee is acting up for no reason whatsoever, it just likes to be silly at times (night).

Tl;Dr: The comic I posted, I guess.

Thank you for reading.

EDIT

The good ending. All of the responses were to my surprise, overwhelmingly positive! I thank everyone who has commented with their own insights, I learned a lot, remembered a lot, and discovered a lot of things that would help me manage my pain. Thank you all, I wish you all the best of luck

cross-posted from: https://ani.social/post/17859160

Source: There's No Freaking Way I'll Be Your Lover! Unless... - episode 5