Venting chronic pain is a different beast

[muu]

i've been chronically ill and disabled to varying degrees over the past 3-4ish years of my life and it's baffling how anyone in the same position as me has a will to live and keep going on when it only ever worsens.

exercise/over exerting my body and mind causes me to flare up and become bedridden and feel like i have the flu. i'm tired all the time and can barely think. i'm losing around a pound of weight a day which is already "bad" considering i'm underweight to begin with. medical professionals said i was "starving to death" when i went to the hospital earlier this month. i do believe them, my physical and cognitive functions have started to worsen pretty rapidly. even writing this i am extremely lightheaded and i don't know what i'm doing fully.

i can't eat solid foods, it causes me extreme nausea and i'm terrified of vomiting because i have severe emetophobia, which kind of sucks because it makes my methods of CTB quite limited but it is what it is.

even my CTB methods have to be carefully planned around my disability. waiting for a day i feel physically capable enough to prep it and do everything for it is so hard when every day is a struggle. i can't drive anywhere or walk far distances.

i'd do anything to be physically healthy.
i'd do anything to be pain free again.
i'll never work, i'll never marry, i'll never finish school… it's depressing! healthcare professionals don't even begin to understand either.

this isn't living, it's surviving. i hate thinking about it.

thank you for reading if you've made it this far. i appreciate it.

 

[forgivemegod]

I have a pretty serious health condition that isn't nearly as difficult as yours, I deeply understand you and I'm sorry, and I feel you, I'd do anything to be pain free again too. My life was one before my disease, and another after it. People that don't have chronic pain can't even begin to understand our situation. I hope you can find people that can understand you here

 

[dontwakemeup]

I'm sorry life has come to this for you. I truly believe only those people living with chronic pain understands how you feel. I think people believe that the medication they give you (us) works every single time. The reality is sometimes it doesn't work, or takes the pain down a notch.

Everything you try to do is like climbing a mountain. I understand how difficult it is to wake up knowing the next day will be the same. It's like you mentally have to accept the old you won't be anymore. You have to accept all the things you will miss out on, as time passes you by.

The moment you say this is too much, you are labeled crazy. The second you can't deal with all of this and simply want to check out, you're threatened with a mandatory psych admit.

I think chronic pain is one of those invisible illnesses that people will never understand. I never understood it until I was forced to live just like you.

If I can give any advice to you, I would share these tips that have helped me:
-You are not obligated to answer everyone's calls. If you feel tired, rest, don't fight it. Never plan ahead because it only makes it difficult it you can't do as you planned. If you're in pain, I keep it simple and say my head hurts. People are more understanding to things they can relate to and will give you a break. Try to keep beverages and those packed fruit cups, puddings, etc close to reach. Eat whatever you enjoy, don't worry about calories, try to enjoy whatever it is. Try putting headphones on and listening to audio books.

 

[AAE]

I did read and I truly feel for you. I'm suffering multiple chronic illnesses and disabilities myself and I have nothing left from what was my life other than memories. I lost my last close loved one during the time I got much more sick and in fact, other humans caused her sickness and death just as much as me getting so much worse. I relate 100% to what you say about healthcare "professionals" not understanding or acknowledging anything. No part of society does. They view life through some rainbow lens and would never dare to step out of their bubble to see the actual reality.

That said: I wish you all the luck, peace and love that you truly deserve.

 

[CatLvr]

Man, I get it. Really. I'm living the same damn life. It's rough, but I have made a promise not to leave -- for now -- and I am gonna keep it.

 

[FuneralCry]

I'm sorry you have to suffer so unbearably, it's just so cruel to me how there's all this pain and suffering in existing, it really sounds like you've suffered so much, I wish you the best.

 

[unluckysadness]

I'm disabled too. Severe neck spasms and pain (neuromuscular disease and no cure). I have other issues too so I feel you. I've got 0,00005% chances to get this cruel disease so it's like I won to the lottery, but a lottery from hell...