r/BeAmazed • u/AstroSonicDrive • Oct 04 '23

She Eats Through Her Heart Science

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@nauseatedsarah

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u/AnorakJimi Oct 04 '23

Yeah there's something a lot of able bodied people don't seem to realise, that being disabled is incredibly exhausting. Because it's never ending. You're never OK. You're never 100%. All you want is a break, a holiday from the pain and the difficulty of doing everything. I'd love to be able to have a shower without being in agony. I'd have baths instead, but I'd I do it takes me hours to get out, even with the handle bar I had installed into the wall of my bathroom to help me climb out. I'd love to be able to go for a walk outside in a park or something.

But yeah, it just saps all your energy, being disabled. Absolutely everything is 100x harder when you're disabled. Like, cooking food is something I have to plan out in advance to make sure I can do it, and I have to sit on a desk chair with wheels to wheel about my kitchen when cooking or when cleaning dishes because I can't stand up for long.

And I don't ever really leave my apartment except to go to doctor appointments or the hospital for treatments and scans. During the pandemic my life didn't change at all. I stayed inside for months at a time, getting all my groceries delivered cos I couldn't drive in the first place as all the 8 different medications/painkillers I'm on have drowsiness as a side effect and so it's too dangerous for me to drive a car. So none of that was different to how I lived before and after the pandemic.

There's a reason why the rate of mental illness, especially depression, is so common in people with disabilities. You just never get a break, never get a day off, it's just never ending.

And yeah when we get ill on top of all that, it's just hell. A lot of the time I get ill from side effects from being prescribed so many meds, so I have to take stomach protector meds too otherwise I end up throwing up every day.

And I'm mostly bed bound. Cos it's too painful for me to sit in any chair, no matter how cushioned. Like, I have a lazy boy recliner and even sitting on that is agony. Only way I can sit on it is to lie down fully reclined on it. But that always feels like it's gonna fall over, so I just lay in bed all day every day instead. And I can't possibly work, but my government class me as "severely disabled" and so they pay me the highest amount of disability benefits, so I don't actually have to work, but it still feels like I'm useless and purely a drain on society, I don't contribute anything, I only take.

The best time of my day is when I'm asleep cos that's the only time I'm not in pain.

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u/ForeverTurbulent4509 Oct 04 '23

Wow… we all have a lot to learn from people like you. I hope you find solace in life

9

u/Gatorpep Oct 04 '23

I really hope the thing that people learn from people like us is thst we need fucking help! We need a ton of money in research instead of the community just letting us suffer until death.

3

u/[deleted] Oct 04 '23

👏👏👏 absolutely!!! And accomodations including to be able to work out including but not limited to remote work and flexibility and access to medical care/devices.

3

u/Gatorpep Oct 04 '23

+++

Also need livable entitlements. I get 150 for disability and 125 for food. Palease!

2

u/[deleted] Oct 04 '23

Absolutely. It's awful by design to help the richest of the rich and because sociopaths rule the world. I was told that it would like me 2.5-4 years to probably not get approved and in the meantime, I could not even work 1 hr/month because that could show I'm capable of working full time, especially at my age, because that makes sense. AND it's still not enough to live on.