My future

[KuriGohan&Kamehameha]

Things are even more cooked than I thought. I'm in my late 20s and have had chronic pain and chronic fatigue syndrome since my teenage years, found out a few years ago that I have degenerative spinal discs and sciatica, was suspected to have ankylosing spondylitis at the time but it was ruled out by further blood tests. For all of those years I was given no treatment besides antidepressants, naproxen, and exercise pamphlets which did fuck all.

Now, I found out that my disc degeneration has progressed, and I keep developing
further scoliosis due to how badly my spine is screwed up from all the damage. It took years and years for me to finally be prescribed a low dose of pain medication, and of course I am on other drugs to manage the constipation and side effects, because nothing can be easy or simple for me. Even then, I am still often in a lot of pain.

After trying pretty much every treatment you can think of with no success for chronic fatigue, I got to try an off label drug recently that has helped some people with CFS and long covid, not only did it not have the intended effects but it worsened my circulation and left me with constant leg pain (which I already suffer from due to bad circulation) and pins and needles. I just want to cry because I was praying to get some cognitive ability back, and it didn't happen. Also, I started having issues with my blood cell counts and clotting, but it has been of course dismissed by doctors because I'm a younger woman.

Due to PTSD, I have frequent and horrible nightmares about witnessing relatives in near death experiences, even though most of my relatives are dead, or warped versions of the sexual abuse I experienced in my adolescence. I only have one family member left who has any contact with me, my grandma, and her health had been on the decline for several years now. She has serious heart problems and could die at any moment. Due to witnessing her having a life changing accident, and taking care of her before the ambulance arrived. Because of this I now have even more nightmares. I wake up everyday wondering how many more years I'm going to continue to be tortured because I've been having PTSD nightmares since early childhood.

I have pretty much no support outside a couple of people and spend 90% of my time irl alone, which is a completely miserable existence. Laying in bed all the time, I'm so haunted by the amalgamation of memories that has been my life thus far, being abused so much, becoming sick, people not believing that I am truly this sick including but not limited to partners, friends, doctors, etc. To constantly experience such betrayal from other people is a permanent scar on the psyche.

I genuinely feel like I'm trapped in some version of hell or purgatory. The way people look at me because of my scoliosis and bad posture, and how I am struggling to walk, makes me feel like a zoo animal sometimes. I get dirty looks when I'm sitting in the disabled seat on buses or trains. Everywhere, I'm surrounded by all this health influencer grifter nonsense- because wellness is the most prized thing in our world, and it's treated like a moral/personal failing when you're unwell- about how doing light exercise, fad diets, and learning Buddhism derived coping mechanisms is the cure to everything. We are *always* in control of our destiny!

My future is just beyond bleak. I look around me and see people spending time with their families, more and more people my age having children, happy marriages, interesting careers, traveling with their parents and siblings, and so many more things that I am supposed to be doing. I feel cheated out of any chance at life, robbed of the opportunity to have anything which is considered normal or commonplace. I'm facing down the reality that my body will continue to deteriorate, all while hearing from well-meaning but ignorant people that I just need to hope for some magic improvements in the future.

I really don't have a future. It's like staring down an endless void of nothing. I wish it was easier to die and that I wasn't such a scaredy baby about it after a failed attempt years ago. Nonetheless, I still want to die every single day and feel like I long since hit the point of no return. Every day I just hope I can be free of this body one day once and for all

 

[bagel12]

Things are even more cooked than I thought. I'm in my late 20s and have had chronic pain and chronic fatigue syndrome since my teenage years, found out a few years ago that I have degenerative spinal discs and sciatica, was suspected to have ankylosing spondylitis at the time but it was ruled out by further blood tests. For all of those years I was given no treatment besides antidepressants, naproxen, and exercise pamphlets which did fuck all.

Now, I found out that my disc degeneration has progressed, and I keep developing
further scoliosis due to how badly my spine is screwed up from all the damage. It took years and years for me to finally be prescribed a low dose of pain medication, and of course I am on other drugs to manage the constipation and side effects, because nothing can be easy or simple for me. Even then, I am still often in a lot of pain.

After trying pretty much every treatment you can think of with no success for chronic fatigue, I got to try an off label drug recently that has helped some people with CFS and long covid, not only did it not have the intended effects but it worsened my circulation and left me with constant leg pain (which I already suffer from due to bad circulation) and pins and needles. I just want to cry because I was praying to get some cognitive ability back, and it didn't happen. Also, I started having issues with my blood cell counts and clotting, but it has been of course dismissed by doctors because I'm a younger woman.

Due to PTSD, I have frequent and horrible nightmares about witnessing relatives in near death experiences, even though most of my relatives are dead, or warped versions of the sexual abuse I experienced in my adolescence. I only have one family member left who has any contact with me, my grandma, and her health had been on the decline for several years now. She has serious heart problems and could die at any moment. Due to witnessing her having a life changing accident, and taking care of her before the ambulance arrived. Because of this I now have even more nightmares. I wake up everyday wondering how many more years I'm going to continue to be tortured because I've been having PTSD nightmares since early childhood.

I have pretty much no support outside a couple of people and spend 90% of my time irl alone, which is a completely miserable existence. Laying in bed all the time, I'm so haunted by the amalgamation of memories that has been my life thus far, being abused so much, becoming sick, people not believing that I am truly this sick including but not limited to partners, friends, doctors, etc. To constantly experience such betrayal from other people is a permanent scar on the psyche.

I genuinely feel like I'm trapped in some version of hell or purgatory. The way people look at me because of my scoliosis and bad posture, and how I am struggling to walk, makes me feel like a zoo animal sometimes. I get dirty looks when I'm sitting in the disabled seat on buses or trains. Everywhere, I'm surrounded by all this health influencer grifter nonsense- because wellness is the most prized thing in our world, and it's treated like a moral/personal failing when you're unwell- about how doing light exercise, fad diets, and learning Buddhism derived coping mechanisms is the cure to everything. We are *always* in control of our destiny!

My future is just beyond bleak. I look around me and see people spending time with their families, more and more people my age having children, happy marriages, interesting careers, traveling with their parents and siblings, and so many more things that I am supposed to be doing. I feel cheated out of any chance at life, robbed of the opportunity to have anything which is considered normal or commonplace. I'm facing down the reality that my body will continue to deteriorate, all while hearing from well-meaning but ignorant people that I just need to hope for some magic improvements in the future.

I really don't have a future. It's like staring down an endless void of nothing. I wish it was easier to die and that I wasn't such a scaredy baby about it after a failed attempt years ago. Nonetheless, I still want to die every single day and feel like I long since hit the point of no return. Every day I just hope I can be free of this body one day once and for all

i'm so sorry that you're going through this a few friends of mine have been dealing with chronic pain, me/cfs, and long covid and it opened my eyes to the cruelty of how society and the medical system treat people with chronic illness. my friends are women in their 20s too. most doctors don't even think it's real, the waitlists for specialists take years, and the meds have such inconsistent effects between different people. it's one of the most debilitating chronic conditions, but it's so underfunded. like idk maybe there would be better treatments if it was funded properly!!! it's all so evil.

and people, whether it's their closest family and friends or complete strangers, think they're being dramatic, that their health issues are psychosomatic, or that they aren't trying hard enough to heal (in part because they're young and they're women). i think people are scared of becoming disabled, so they like to think that, if they just do the right things, they can be healthy and invincible forever. they don't want to come to terms with the fact that their health is not within their control. they don't want to think about how one accident, one infection, one genetic mutation, one spontaneously occuring medical condition, can change their life forever. so they unconsciously believe that disability must be the fault of the person experiencing it, that everything can be prevented or fixed if you just work hard enough. it's ableism plain and simple, and it is so pervasive throughout society. i can't imagine how frustrating and demoralizing it feels being on the receiving end of this constant bullshit.

witnessing people i care deeply about suffering in this way, and being treated this way by doctors and society, is part of why i'm on this website. it gave me an existential crisis, i lost faith in humanity and in life itself. i imagine it's 100000000000x worse for you since you're actually experiencing it. i guess i'm just trying to say that there is someone out there who cares. you deserve so much better than this. you deserve a support system that takes care of you, a medical system that is dedicated to understanding your conditions and treating your symptoms, and a society that supports you instead of casting doubt upon your experience.

my friends tried a lot of meds and they both finally found a regimen that seemed to help with the chronic fatigue. it took a lot of trial and error (months or years) but they went from bedbound to being able to go outside, although they will always be disabled and they expect a shortened life span. mobility devices helped too. but mostly they were just lucky to eventually find medical providers who were willing to try things. also one of them started bringing in a man into appointments and the doctor actually started taking them seriously?? it's so bleak. anyway if you'd like, i can ask them about the meds they are on. but i completely understand if you don't want to hear it. i don't want to give unsolicted advice.

i am also so sorry to hear about your grandmother, and about the ptsd nightmares. it all sounds like so much for one person to bear. this shit is so unfair. i hope that you get some relief, eventually