I need to have a serious conversation with you.
Earlier this year I almost killed myself.
Being chronically ill and trying to work full time made me sick and made me so sick I almost died.
What choice did I have? We can barely afford food right now on one income, so I have been begging friends and family for money to keep us afloat. I was fired in January and have been struggling to find work, not because I'm ready to go back but because I have to. I shouldn't be working, I can tell you that much. My body is in so much pain and in January I probably would have killed myself because my psych meds were not being well monitored at the Cleveland Clinic, even though I was doing everything they told me to do. I struggled to get them to listen to me about the meds not working, or how I needed a better time for group just to get access to my medications, but since I worked nights it was impossible to go to group. They wanted me to be there at three or four in the afternoon and they didnt have times earlier or later, which was like asking a regular day worker to show up for group at 1AM. I just wanted to have psych meds so I wouldn't kill myself. As much as group therapy helps in some situations, it wasn't enough for me and when I asked to have more one on one therapy I was refused. Instead of using all the tools I wanted to use for my own mental health I was being told no? Why?
This is not an unusual story. Chronically ill people have to deal with the struggle between being too healthy to get disability and too sick to work. Most people need to divorce their spouses otherwise they wont get their SSI, which is a bunch of shit. Our society is built around making profits, and if you cant make profits, you cant survive.
Only here in the US do people go into debt because they are sick and cant help it. Capitalism makes you pay for everything. Eyes not good at reading? You have to pay for glasses. Hard time getting around? Pay money for a medical grade cane. Want a tiny robot to vacuum your house for you? its only like a couple hundred dollars, we don't care if your legs don't work, only lazy people don't clean their own house. Have to work in bed? This table only costs 120 dollars because its got wheels to push it out of the way when you need to sleep. Not everywhere is wheelchair accessible, which limits access to houses, restaurants, things we need. Things human beings need. Vets missing limbs aren't getting their fucking check for defending this country. If you can afford insurance, you still pay a deductible to get access to your meds at a discounted price, which you still have to pay for, and if you cant afford it, NO ONE CARES.
I paid off my credit card in April. I have almost hit the limit at the end of this year. This card I only use for necessities like, taxes, medication, medical appointments, and food. I literally cant afford things I need to survive because I cant work, but I cant work because I have the bad luck of shitty health. I literally worked myself to near suicide, got fired, lost all my meds, lost my health insurance, lost every fucking thing in my life that gave me hope.
I have good insurance now, thanks to my spouse, and I still racked up all this medical debt just trying not to kill myself. I don't know how I survived not having psych meds for so long. I was sure I would die at any point because I thought I would finally snap from the excruciating pain and end everything. Once I got on insurance, I was able to see a doctor, get my psych meds, get my meds to help me walk through the pain I experience every day, and get to appointments to try and figure out what is causing my chronic pain. I have fibromyalgia diagnosed already, but I suspect something else may be related to the extreme bone and joint pain I feel all the time. So far I just have a diagnosis as chronic pain and we're struggling to find ways to deal with it.
I dont want to die anymore. I still feel pain all the time and little helps it. I'm trying to find things to do but chronic illness means I can only do a little each day. I have little hope for my situation improving and I don't think I'll be able to get disability on the fibromyalgia and chronic pain diagnoses alone. I'm trying to find answers but there's little I can do. This is a sad story but not that unusual.
I have a friend who worked herself to exhaustion. She lives in chronic pain. She also uses up all her sick days and takes time off without getting any money so she can keep her job and have enough hope to survive. I have other chronically ill friends who work themselves to the point of passing out before they will stop because they cant. We cant stop working because we wouldn't be able to get treatment just to survive. My mom should probably be retired by now and has a ton of chronic illnesses, but she still works because she cant afford to just stop. I've talked to people online who have chronic illness and are struggling to get SSI, but because they worked in the past several years they aren't eligible. No one that is chronically ill can just stop working and still get support for their health. We are completely and utterly fucked in the land of opportunity that is the United States of America.
I have student debt to pay off still, a car, rent, my one credit card, and utilities. I dont think I can go back to work because I'm not functional enough most days that I could put people in danger. I miss my job and my friends I had. I almost died but before I broke from the pressure and exhaustion and pain, I was hopeful.
Now I just hope I can get out of bed the next day, to do one thing I like; play a game, read a book, make some art, even just play with my bird.
I want to share with you my logs from the past year. I even recorded how many steps I take now, and bad days I take maybe 300 steps in the entire day. But there are many days that you can see where I take more than that, even at a a level 8 pain. It's not that the pain isn't that bad, its that I have to do things that day, regardless of the pain.
I just wanted to tell you all why I have been missing for a while. Why I haven't been active in Creatures lately. I think if you see what I have been struggling with, maybe you can soften any attitudes you have towards your own friends and family with chronic illness.
https://www.dropbox.com/s/thmq9v7800qffg2/1544063237981_Christine_Sharas_PainScale_Report.pdf?dl=0
Edit: I have my medical marijuana card btw, don't hate on that.
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