Feeling lost
Is anyone else struggling?
Hi, I'm a woman and I was diagnosed with possible Marfans at age 8 and had a scoliosis surgery when I was 13. I'm 33 now and things have been really hard on me. I hear so many stories about people being able to live normal lives, but it just hasn't been that way for me.I was probably doing well until I got into the work cycle and in just a few years the damage became permanent. I would constantly go to doctors but my pain was ignored for a very long time until it was too late and my issues are mostly inoperable. I have such a long list of things wrong with me and I can barely leave my bed now and I always feel guilty when I complain so I have tried to stop. I now have empty Sella syndrome from my surgery, arthritis basically everywhere and slipped disks in my lower back and neck, foot drop, lupus, and the main reason they can't operate is because I have a condition called arachnoiditis which is seen as a mass petruding from the spine (which is really a bundle of nerves.)
I stopped going to the pain clinic because they don't help and I'm tired of getting poked with so many needles. I only get relief whenever I get a small dose of pakn meds for a tooth removal or other surgery. My joints are all getting arthritis now and I'm overweight because I can't walk much anymore or cook like I used to love doing. Im just so tired all the time and everyone tells me God will heal me if I believe and pray.
I've been on disability since 2019, but dont get paid enough to survive on my own, but luckily I have my partner who helps me a lot, but I cant help but feel guilty for that too because im taking up so much of his life. His parents also agree that he can do better than me and its so hard. They treat me like I'm a huge complainer. I cant even afford a new wheelchair right now and barely fit in my old one because it was for a thinner older person. Im also 6 feet tall so my legs drag.
I have no one to talk to about it because no one else understands. I look somewhat normal on the outside, but all I know is an existence of pain. It doesnt help I have so many mental health comorbitidies that come with a connective tissue disease. I cannot have kids, even though it was a dream of mine. My hands are starting to break and throb and I'm an artist and gamer. I feel like I am losing it all. The words of my parents ring through my head whenever I feel an ounce sorry for myself. From age 8 I was told babies are dying from cancer and I can walk and talk and breathe ao I have no right to complain.
I've lived my life with this mentality. It was worse when I was a kid, caused severe body dismorphia and nothing I ever did was good enough. It's lead to the same thinking as an adult and I know nothing gets better from here. I cant even believe there are some people who never feel chronic pains and can just exist!! Like some people can walk standing straight up without muscle spasms and even run??? Crazy lol. Ive never been able to do that!
This is just a rant, but I was just wondering if there's anyone out there who understands me. Everyone seems so hopeful and like they live normal lives and I feel like I am trapped inside of my own body. I have done nothing with my life and have been through abuses other than my own body abusing me. A lot of trauma physically and mentally. It might help me just knowing I'm not alone and all this pain is real. Sometimes a light goes off in my head on a good day like oh, maybe I AM faking it and being dramatic and I just have to stop being lazy. That kind of thinking makes me work on cleaning the whole house and then be stuck in bed for weeks.
Uh just life.