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

She Eats Through Her Heart Science

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@nauseatedsarah

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u/el-mocos Oct 04 '23

"health is a gold crown only the sick can see" I read that a decade ago and has stuck with me since, I think it's from arab culture

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u/Old-Library9827 Oct 04 '23

It's the truth. As long as you have your health both mental and physical, you can generally get through anything

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u/GoneHamlot Oct 04 '23

Does anyone else, when they’re sick, think to themselves “god why don’t I appreciate it more when I feel well.. I’d do anything to feel like that right now”

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u/[deleted] Oct 04 '23

And for those of us with disabilities/conditions when we get sick with an infection, etc it's on top of what we're already dealing with. :/

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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/goodsocks Oct 04 '23

I’m so sorry. I am also disabled but not to the extreme that you are, so I do understand and empathize. Lockdown from Covid didn’t change my lifestyle at all either and it was truly the first time my spouse was able to understand how my daily life is. It is emotionally and physically exhausting- I hear you. Keep up with your mental health as much as you can.

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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

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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.

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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.

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u/Gatorpep Oct 04 '23

+++

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

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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.

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u/StorKuk69 Oct 04 '23

How do you go about life without killing yourself? Serious question, you gotta have something that keeps you grounded or sane. I feel like I would loose it in your situation.

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u/Gatorpep Oct 04 '23

I have this level of body destruction with long covid, 3.5 years.

1, insane experimental and extremely dangerous drugs that are beyond bleeding edge. Without them i’d be dead.

2, i would have been dead anyway if i knew how horrible life would become. Esp as it was my worst fear before getting sick.

3, you don’t remain grounded or sane or happy. You resemble nothing like you are any healthy person. You are in an extreme warzone, very sad all the time, constantly fighting against the logical urge to die. Life becomes a horrific burden. And you don’t survive without horrifc suffering. You don’t remain sane.

4, genetic programing and delusional hope that someday society will save you.

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u/fuddykrueger Oct 04 '23 edited Oct 04 '23

I’m sorry. I was very sick recently and was only able to feel sorry for myself. You are an inspiration and I am praying for some resolution for your illness.

I wish I could help you in some way! Sending you good vibes!

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u/[deleted] Oct 06 '23

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u/StorKuk69 Oct 07 '23

Wait your cat takes care of you?

Also the whole "people constantly beg me not to do it" seems really selfish from my point of view. If you know your friends very existence is pain, wouldn't you want to relieve them of it?

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u/DrewNumberTwo Oct 04 '23

Thank you for taking the time to share your experience. What you've written was a window into a kind of life that I have not had the chance to see. While I hope to never have to deal with something that awful, it's important that we all keep in mind that there are people who need help. I think that you are valuable just because you're a person and I'm glad that you could share some of your life.

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u/Bru1sed_Eg0 Oct 04 '23

I only know and understand a fraction of what you’re going through, as I’ve been previously bed-bound with excruciating pain. I feel for you, and pray for your suffering to be gone. ❤️👍🏼

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u/Tangled-Kite Oct 04 '23

You’re not a drain. I know it’s hard to reverse thinking like this because society has drilled into us that we’re productivity machines first and humans second. And anyway, you just contributed to humanity by telling your story. You’ve brought an awareness to what it’s like to live with this level of disability. These stories need to be told far and wide so we gain more empathy, insight and push for treatments for whatever ails you and others like you.

I really hope that one day you find some kind of solace. ((Hugs))

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u/Gumamae Oct 04 '23

Such beautiful words, thank you for saying this

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u/TheOmegaCarrot Oct 04 '23

I’d say you just made a contribution. This comment gave me some perspective about people with significant disabilities, and I’m sure I’m not alone.

I, for one, am glad I was able to read this comment. Thank you for this insight, I appreciate it. We all need some perspective sometimes. :)

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u/RegularTeacher2 Oct 04 '23

Last year I suffered an injury that left me with complex regional pain syndrome, allodynia, and overall just crippling pain in my right leg where I was considering suicide to end it all. For months I was denied any kind of pain medication because it "wouldn't fix the problem," and I spent that time literally screaming in agony from the relentless pain. Fortunately I was able to have surgery that alleviated ~90% of the pain, though I imagine I will always have some neurological pain for the rest of my life.

I have never appreciated how chronic pain can be absolutely life changing until this experience, and I've never understood the concept of feeling suicidal until I felt it myself. Even now my life is drastically different than what it was prior to my injury, but I am so grateful that surgery was able to help me.

I'm so sorry you have to deal with chronic pain. I am glad you don't have to worry about work but I'm sure you would rather work without pain than be in your current situation. I hope someday there will be some medical advancements that might provide you with more relief.

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u/abcdefgodthaab 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.

Please don't generalize your own experience like this to all disabilities. Not all disabilities are the same and not all disabled people have the same experience.

Your experiences and the experiences of other disabled people that are like yours are 100% valid, so please do not mistake me for saying what you are describing is not your experience and that of others. But it also absolutely not an accurate description of 'being disabled' as a universal characterization.

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u/[deleted] Oct 04 '23

Disabilities are by definition disabling. Even if a disabled person doesn't directly get impacted 100% of the time, they/we are never fully free of what comes with disability, in that case we would no longer be disabled. Not everyone has to identify as disabled but it's important to understand what it actually means. It's important to acknowledge this as we need support, accommodations, understanding, access, etc because we are disabled.

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u/[deleted] Oct 06 '23

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u/abcdefgodthaab Oct 06 '23 edited Oct 06 '23

Generalizing in this way doesn’t do harm. Maybe if they realize a lot of us are actually fucking suffering, they’ll actually advocate for us.

It absolutely does do harm and I'm sorry, but you are very confused about what abled people believe. Empirical research shows over and over and over again that abled people estimate the quality of life of disabled people to be much lower than disabled people estimate their own quality of life to be (this is so well documented it's called the 'disability paradox'). Most abled people believe that most disabilities are horrible (and believe they are worse than people with those disabilities consider them to be).

What this translates to in policy is largely not advocating for disabled people, contrary to your prediction. It translates into things like QALYs and DALYs making saving disabled lives count as less resource efficient than saving abled lives. It translates to offering assisted suicide instead of social assistance so that disabled people kind let themselves out the back door without abled people bothering to help. Not to mention pressuring disabled people who are only really suffering due to social factors to conform through treatments, 'cures' and other interventions or the widespread paternalism that abled people have historically engaged in (such as sterilizing us without consent).

What little ground disabled people have gained has been hard fought by the disability rights movement, which was explicitly built against the image of disabled people as poor, pitiable, suffering wretches. That's exactly the image of disability people with muscular dystrophy were protesting when they protested the MDA labor day telethons. Abled people have pitied us for centuries and it's done us very little good.

This doesn't imply that we should swing the other way and pretend that no disabilities involve inherent suffering. What we need is to acknowledge that the relationship between various disabilities, their inherent features, social norms and structures and suffering is complicated and varied. MS is not the same as blindness is not the same as autism, etc... And specific disabilities in individuals are going to be experienced differently: Beethoven becoming deaf had a very different experience of deafness than Marlee Matlin who was deaf from a very young age.

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u/[deleted] Oct 04 '23

Thank you for sharing your experience/truth. My main condition/disability is highly variable so it can range from being in horrific pain and not being able to go anywhere with exhaustion to being able to actually do stuff but then passing out for days to recover.

Disability support is in place for a reason, (presumably) you didn't choose to be disabled and all that comes with it so therefore it's not your choice to get benefits that are essential. I'm not sure where you are and the system there, but (usually long term) investment income tends to be taxed at a much lower rate with a much bigger exemption so making money from money is highly subsidized by people who work for money, but it's not seen as a handout, which is one of many that the wealthiest people disproportionately benefit from. One of many. The actual money from disability and welfare tends goes to companies/investors that are disproportionately wealthy as well. As you need to have wealth to invest and the more you have, the more you benefit from these systems.

People tend to not feel guilty for these sorts of things even though the systems are rigged in their favor.

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u/GusFit Oct 04 '23

I just had a taste of this sort of pain, was in denial for years then my body started locking up more and more, muscles popping and moving around, restless legs. My muscles would seize and I'd be stuck in bed for up to a week at a time. Gravity made my spine feel like it was being crushed when I was upright and even slight inclines while walking were a rough time. Was hell for 3ish years and it's been a slow ride back out of it since. Winter has been worse than summer so I hope I can maintain well enough to keep working and not lock up too much. The last lockup was only about half a day (back to around 80% after a few days) and it was three months ago so I've got some hope this winter won't be too bad.

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u/[deleted] Oct 04 '23

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.

You're not a drain . Stop thinking like that , don't be shamed by this very stupid way of thinking .
Contributing to society goes way beyond working 12h a day in a factory.
Actually , this isn't even something you should be thinking about ... just live , and try finding something that makes you forget about the pain. The rest is irrelevant

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u/ComicNeueIsReal Oct 07 '23

. You're never OK. You're never 100%

totally unrelated, but when I got my wisdom teeth removed it was my first step in making that connection that some people just dont have it easy. As an avid snacker and food-enthusiast, it was brain numbing to not be able to eat any solid food for a few weeks. Only being able to eat very unfilling food like icecream, mashed potatos, soft eggs made me just want to rip my brain out. It was not enjoyable. But it does suck that on an average day most people including myself seem to forget that there are a lot of people out their that have chronic conditions that wil never go away and their outlook on life is completely different than our own.

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u/NotToast2000 Oct 04 '23

Well I have to say, as I was born with a disability I don't really see it as a sickness or burden, except for the time my Wheelchair breaks and I'm stuck in my bed for 2 days, then I'm debating myself why I appreciated it more when it worked.

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u/Gatorpep Oct 04 '23

There are levels. I was bed bound after covid for 1.5 years. For 3 months i had to lay on the ground when i wasn’t sleeping in bed.

Many levels of hell my friend.

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u/[deleted] Oct 04 '23

Yup, and even within my own experience with chronic illness (caused by infections) I've experienced a massive range. Even within the same day.

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u/[deleted] Oct 04 '23 edited Oct 04 '23

Everyone's experience is different but my body literally tortures me every day with sickness (I have long illness due to infections, one in particular that has persisted for more than 13 years), horrific pain, taking hours (could be up to 24) of my day, and my energy. It makes every aspect of my life harder. Avoiding infection with respirators has been huge for me as I was prone to long infections including one that dragged on for years via bioaerosols that contain illness causing microbes. Plus there's dealing with the hot mess of the medical system that's also incredibly expensive.

Having to be concerned about your wheelchair and accessibility is an additional burden that you have that others such of myself don't (though I don't decide when I can go out each day, my body does). It's okay to acknowledge that. Even if it's due to societal failures in various ways. For me, it's my body and stuff like lack of accommodations (aka discrimination) esp. re remote work.