Chronic Illnesses and Physical Diseases Megathread

[PrisonBreak]

Hyperacusis, Tinnitus, Gastritis, Gastro paresis, Depression, Anxiety, IBS-C,hashimotos hypothyroidism, lpr reflux, herniated discs, losing my hearing, double vision, fatigue, Anosmia, photophobia, pneumonitis, high heart rate, tmj, atn, so much more

did the replaying of songs start after the tinnitus or hyperacusis or before?

The replaying of song started few weeks after tinnitus onset. It started with replaying songs then progressed to replaying people's voices. 6 years later and its still mental torture. The tinnitus is my main tormentor.

 

[tryingtoescape]

I'm so terrified right now because of another health problem. Even saying it and thinking about it is making me nauseous like when I first developed tinnitus. My vocal cords are damaged because of throwing up and yelling and crying very frequently due to anxiety attacks. I didn't want to accept it and hoped it would go away but it was confirmed by an otolaryngologist.

I already have tinnitus. I have a horrible fear of losing my voice or my voice changing. I used to have a great singing voice as a child. A pair of strangers had cried during my recital while I did my solo and they told my parents they thought my singing was beautiful. I absolutely cannot sing anymore, for the last few years, ever since the damage occurred. Although that is upsetting I'm not terrified because I can't sing well anymore, but because I'm so scared of this voice damage escalating and being permanent. I have had throat pain on and off and vocal strain for a couple years now but I worsened it in the past months and it's more constant and serious now. I feel so frustrated with all these life-altering health issues and it's anxiety provoking for me to even acknowledge it. I can't accept it. What some people don't understand is that it's one thing to have one of these issues but when they are added to each other, it is so terrifying and unbearable and your quality of life is reduced even more.

I just want it all to go away. I have horrific fears of my speaking voice becoming permanently different going through my head and even more horrifying, of the tinnitus escalating and being in a panic attack and not even being able to scream. I want to throw up again when I think of these things but that will even further damage my vocal cords. I am so nauseous from this anxiety, in my chest and my heart and my stomach, I fantasize about stabbing myself during the panic attacks because I'm feeling such violent distress. I am so frustrated and scared of these health issues. I cannot believe this and even worse than this is allowed. I need to get out of here soon.

 

[Mary5689]

I am struggling with migraines, epilepsy and depression. Thank you for creating this topic. I think many will feel better when they talk about what worries them

 

[tryingtoescape]

On top of that, I also have an ankle sprain that's lasted 6 months and I'm so scared about that too.The ultrasound revealed a tendon injury and chronic ankle sprain. I am so desperate for it to heal. Everything I do causes a setback. After the tinnitus, I'm terrified of any additional ailments that will further reduce my quality of life. I'm so scared of permanent damage. I involuntarily clench my fists and vomit from anxiety. I'm so tense and in fear 24/7. I feel like this is all a nightmare.

 

[lovemydietcoke]

I have a rare kidney malformation that causes a ton of kidney stones, infections, sepsis, and chronic severe pain. I try really hard to stay positive but it is hard knowing that my pain will progress and there is no cure or treatment. I've had 20 surgeries in the last 6 years and my body is just exhausted.

 

[Wrennie]

I'm incredibly grateful for this thread.

Yesterday my father decided to mock me as I was writhing on the floor in absolute agony from my disease, begging for death. My arms are failing me, I can't stop shaking, I'm going blind, my skin and eyes and lips are drying out, my hair is turning completely white, and my veins feel like they were injected with sulphuric acid (in addition to so many other things). I'm suffering so much and the only people I can turn to for help look down on me as though I were a grease stain on their floor.

I just want to die. Why can't I die? Why do I have to be tortured? I've never wanted to hurt anybody, so why do people get off scot-free hurting me?

If I go to a care home I know the nurses will abuse the everloving shit out of me. Even though my mother frequently visited me in the ICU after my accident I still had to deal with some nasty ones.

If I'm sectioned I'll just be forced to do useless shit like throwing a frisbee at the center of the room (because omg guyzzz the cure for depression is dat simple!!11!!one) and then be confined to a room for the rest of the day in a rock solid bed while staring at a blank wall for hours on end. That's literally all they offer at those places.

People act like I'm crazy for feeling this way… but could you honestly say that you'd be happy living the way I'm forced to live? If I were healthy none of this would be an issue and I could've just continued living happily alongside my family, but that's not how life works. No doctors are willing to help me or provide me with the necessary treatments/surgeries required for me to function and survive (in part due to my shitty insurance), and despite everything I've tried I can't help myself on my own.

My doctors want to put me on psychiatric meds. How is that supposed to help with a PHYSICAL condition??? To top it all off, I'm allergic to 99% of them, and one made me jump off of a building.

I just don't know anymore. I'm so, so tired. I just want to disappear. I'm sick of being here.

I wish I lived in Canada. Then I'd at least have MAiD to look forward to. How ironic is it that I live on the same continent, but am instead confined to this repulsive "second world" nation known as America.

 

[PeacefulTonic]

I feel like many people here would meet the criteria for Swiss euthanasia clinics. Has anyone applied?

 

[Wrennie]

I feel like many people here would meet the criteria for Swiss euthanasia clinics. Has anyone applied?

I desperately want to go to Pegasos but my parents are averse.

 

[PeacefulTonic]

I desperately want to go to Pegasos but my parents are averse.

They probably want to hold on to you as long as they can. I can understand from their point of view as parents, but at the same time if they really love you, they should really consider how much you're suffering every single day physically and mentally. I really feel for you, I'm sorry

 

[Wrennie]

They probably want to hold on to you as long as they can. I can understand from their point of view as parents, but at the same time if they really love you, they should really consider how much you're suffering every single day physically and mentally. I really feel for you, I'm sorry

Thank you.

I believe that my mother loves me, and that's why it's so hard for her to even entertain the idea that she'll never see me again, but my father on the other hand treats me like abject garbage. I think he's only averse to Pegasos because of the financial aspect (not because he cares about my suffering or that he would miss me once I'm gone or anything).

 

[Imthevillain]

I have interstitial cystitis. Makes my bladder hurt SO badly sometimes. I also have neuropathy in my legs. I can no longer run and need something stable to hold when going up steps. Lumbar spondylitis. I'm gonna make an appt to talk to my doctor about chronic fatigue syndrome. I also have a myriad of mental illnesses. For the longest time I felt like such a mistake. It's comforting somehow to know I'm not alone

 

[PeacefulTonic]

Thank you.

I believe that my mother loves me, and that's why it's so hard for her to even entertain the idea that she'll never see me again, but my father on the other hand treats me like abject garbage. I think he's only averse to Pegasos because of the financial aspect (not because he cares about my suffering or that he would miss me once I'm gone or anything).

That's quite awful. I've spoke to my mom briefly about ending my life, and she says she doesn't want me to suffer, but to keep fighting and trying to hold on. I haven't seen my dad for a while, he would be absolutely livid if I killed myself(and probably shoulder the entire blame on my mom).

Money can always be made back, it's a small price to pay to end the suffering of your loved one, imo. I hope he can at least see that one day

 

[Feeding Pigeons]

I got a handful of illnesses but one that I had diagnosed but can't remember the name of is this: Every day, I wake up and fall asleep a few hours later. So one day I'll wake up at 6 AM, fall asleep at 8 PM, then wake up at 7 AM, fall asleep 9 PM. And it keeps rotating like that. Had it my entire life. Nothing stops it. I've tried to force my body to sleep/wake up at strict times, never worked. Ever. That alone destroyed my ability to hold a fucking job. Let alone the other problems.

 

[Dragon's Heart]

I also have an ankle sprain that's lasted 6 months and I'm so scared about that too.The ultrasound revealed a tendon injury and chronic ankle sprain.

It took me a year to heal an ankle sprain because I kept re-hurting it. Hang in there.

 

[tryingtoescape]

It took me a year to heal an ankle sprain because I kept re-hurting it. Hang in there.

Thank you

 

[LastLoveLetter]

Hi everyone,

Following some useful feedback, I have changed the title and description of this thread so that all members with any chronic illnesses, physical disabilities and physical diseases feel encouraged to contribute here, whether their condition is categorised as chronic or not.

There is no pressure to share any information you feel uncomfortable disclosing. You can share as much or as little as you like, seek out supportive connections with others in a similar situation, vent about your circumstances, share any positive developments etc. This space is by a person with physical disabilities and diseases for people with physical disabilities and diseases.

I do have various mental illnesses as well and it's okay for people to share both their physical and psychological conditions if they struggle with a combination of the two, but this thread is aimed at those with physical diseases, disorders and disabilities.

I am open to feedback on other Megathreads I could create to represent different demographics within the community. Please feel free to PM me if you have any ideas and suggestions in relation to this.

Sending lots of love.

 

[bigfishlittlefish]

Doesn't it sometimes feel like you're filling a bingo card, when you've got a ton of chronic illnesses?!

Hey. I'm in the UK as well. I've got Ehlers-Danlos Syndrome, so my hips, shoulders, jaw, fingers, wrists and knees discloate super easily and cause pain most of the time. I also have Postural Orthostatic Tachycardia Syndrome, Gastritis, GERD, Gastroparesis (been waiting for a feeding tube for 4+yrs as severely underweight), Severe Intestinal Dysmotility, Atonic Bladder (have to use catheters often), TMJ, migraines, Raynaud's, depression and anxiety, ADHD, autism and Borderline Personality Disorder.

Sometimes I feel like nothing more than a walking collection of illnesses. I've just applied to one of the Swiss life exit organisations. I'm really hoping they can help me. I'm sick of living in so much physical and emotional pain.

 

[dropintheocean]

Doesn't it sometimes feel like you're filling a bingo card, when you've got a ton of chronic illnesses?!

Hey. I'm in the UK as well. I've got Ehlers-Danlos Syndrome, so my hips, shoulders, jaw, fingers, wrists and knees discloate super easily and cause pain most of the time. I also have Postural Orthostatic Tachycardia Syndrome, Gastritis, GERD, Gastroparesis (been waiting for a feeding tube for 4+yrs as severely underweight), Severe Intestinal Dysmotility, Atonic Bladder (have to use catheters often), TMJ, migraines, Raynaud's, depression and anxiety, ADHD, autism and Borderline Personality Disorder.

Sometimes I feel like nothing more than a walking collection of illnesses. I've just applied to one of the Swiss life exit organisations. I'm really hoping they can help me. I'm sick of living in so much physical and emotional pain.

Hi! May I ask to which Swiss clinics you applied? Im starting that process too. Suffering from severe physical illnesses. Could I pm you? Thank you so much

 

[Mixo]

I wouldn't even know how to start this, but I have a shitload of hidden illnesses that doctors either don't acknowledge or have labeled in vague terms like "autoimmune" and "fibromyalgia." I have ongoing multiple infections and my body simply cannot fight off pathogens. I also have sustained brain damage from an accident four years ago and am showing some early signs of cancer (doctors also denying this too). My biggest battle hasn't been the illnesses themselves, although they cause me a great deal of suffering everyday. It's been trying to get real help. I'm beginning to believe and possibly accept that there is no real help for me.

 

[Rational man]

I appear to have developed autoimmune dysfunction 1 Week after the flu fax in March last Year. I only have signs and symptoms. Possible Hashimoto or Addison disease but not fully diagnosed. Maybe a new hybrid type but im exhausted, pain, lost weight, vomiting, fevers, gut gets paralysed. I used to be fit and strong. Drs have given up with me.

 

[idiotstillwantstodie]

For most of my life my quality of life has not been great. I have aspergers with a panic disorder, which i only learned to control when i got my first benzo description at bit over twenty. On top of that a biting disorder fucked up my looks.

Now it has been a couple years of my "new life" and im looking back in amazement. I have a pretty normal life these days, but a couple years back I was too anxious to even make phone calls. How could i live like that? I didnt have guts to kill myself the traditional ways, so i didnt have an alternative.

This thread has been a very humbling experience to read. My problems are nothing in comparison. But that doesn't mean they don't exist. Even a rock in your shoe could make one self destructive, if you couldn't take it off.

 

[GentleJerk]

Everyone in this thread, I feel like we are some kind of dysfunctional family all connected through the hardships we face.

Yesterday my father decided to mock me as I was writhing on the floor in absolute agony from my disease

What in the absolute ****!? Oh my friend I am so sorry you have to deal with that, what the hell is wrong with people? He better hope he never finds himself in that position. It's bad enough having to live in pain with illness but when there are people treating you like shit that just makes it harder. Absolutely no understanding or respect! Some people can just be unbelievably ignorant and heartless, they have no idea what it's like.

No doctors are willing to help me or provide me with the necessary treatments/surgeries required for me to function and survive (in part due to my shitty insurance), and despite everything I've tried I can't help myself on my own.

My doctors want to put me on psychiatric meds. How is that supposed to help with a PHYSICAL condition???

I see this all too often. I know what it feels like to be abandoned and ignored by so called medical professionals and to try everything to help yourself but to no avail... It's a living hell.

They offer no help whatsoever to me with my ongoing chronic health problems but when the symptoms and the pain get so bad that it gets me down, they want to cram prozac and SSRIs down my throat.

I believe they want to jump straight to pumping people with psychiatric meds because in the long run it disables them and makes them more docile and easier to psychologically manipulate.

Severe Intestinal Dysmotility

I'm dealing with something like this, if you don't mind me asking, what are you doing / being given to help?

I have a shitload of hidden illnesses that doctors either don't acknowledge or have labeled in vague terms like "autoimmune" and "fibromyalgia."

My dude, this is part of what I am going through as well. I really feel for you. It's such a disabling group of illnesses yet they are always under recognised and often invisible in a lot of ways.

And it might be ok if there was recognition and something being done to help, but I'm always being ignored, dismissed and fobbed off. Even now that it has become life threatening they are more willing to just put me on antidepressants because im upset from living with this everyday, than do anything about the underlying causes of the disease.

They say the best they can do is book appointments that can take months, with specialists at public hospitals that often are of no help.

My biggest battle hasn't been the illnesses themselves, although they cause me a great deal of suffering everyday. It's been trying to get real help. I'm beginning to believe and possibly accept that there is no real help for me.

Sometimes I think that most doctors really are just charlatans who only wanted a high paying job and have absolutely no clue. I have also begun to accept that there is no real help for me, and have my exit ready to go whenever I choose. But even that is an almost impossible situation!

 

[NearlyIrrelevantCake]

Lupus, the merry band of misery. Every now and then it goes on a world tour called a 'flare-up'. On a whim. Arthritis, gastrointestinal problems, chest pains, headaches, malaise and fatigue, just to name a few. On a particularly bad day it's a trip to the hospital (fluid build-up in my legs). Living with lupus is like playing Russian-roulette with an unpredictable illness—one moment you're on top of the world ready to take on everything, another you're racked with pain and longing for sweet, sweet release.

Lupus is shit, my mother had it for a good 30 years.

 

[bigfishlittlefish]

Hi! May I ask to which Swiss clinics you applied? Im starting that process too. Suffering from severe physical illnesses. Could I pm you? Thank you so much

Yes, you're welcome to PM me x

 

[lostundead]

The lack of treatments for chronically ill people is nothing short of a humanitarian crisis. The only illnesses that get taken serious are terminal ones and even for most of those there are no real cures. Cancer for instance has been heavily researched since the 60s and they still haven't found a cure or didn't want to find one because big pharma can reap more profits from barely-effective long-term treatments.

We've got dealt the worst possible hand, most of us have godawful genes that predetermined us to these cruel fates, yet society has no empathy for us and won't even grant us a peacful death. People have no idea how much easier my life would be if I knew I could end it anytime if it gets too much for me to handle. Commonly, instead of, at the very least, acknowledging the harsh reality of our situation people will resort to victim blaming and tell us we need to try harder, either because they can't handle the truth or because they're just assholes.

As for myself, I've been suffering from ME/CFS for the past few years and had a very steep decline, leaving me on the lower end of moderate on the severity scale. Not just does this heavily limit my mobility (I can take only very short walks) it also eats away my cognitive abilities which is the most terrifying aspect of this illness.

Everytime I read a chronic illness story, there are always horrible experiences with doctors included, the people who are supposed to help us and get paid to do so, yet instead they cause additional suffering by not taking us serious. They pretend like medicine has reached it's final state and can test for every illness and symptome which couln"t be further from the truth. I feel like medicine is still scratching the surface when it comes to chronic illnesses.

After 9 months of being with my GP, I think I've finally convinced her that my illness isn't "psychosomatic" but there is still nothing she can do for me. I dread going to doctors and am only doing it because I need to prove my disability somehow. If I fail in that endavour I will be forced to ctb because I don't fancy the idea of dying a slow and painful death due to homelessness.

 

[lovemydietcoke]

I spent this evening in the hospital with yet another kidney stone and just wanted to die. I was in so much pain despite being given IV and oral pain medications. I know life isn't fair, but sometimes it seems that this damn disease has taken almost everything from me and I really don't know how much more pain I can cope with.

 

[SleepingGirl]

Ah, there's other people in here with ME/CFS. I honestly hate this shit so much and is one of the reasons I want to CTB, in the combination with my ADHD which makes my brain want to do everything for a crumb of dopamine it drives me into the hole. There's truly no point to living when you're too tired to do anything, and then when I finally do get myself to do something I feel nothing after, and then I wake up and do the same battle all over again. I'm clinging so hard onto what I built up in my life but it's just slowly fading away from me because nothing ever stops and just keeps going and I can't keep up.

 

[tgfm]

Hi all,
I just listened to a pretty good show on NPR about the right to die movement which talked a lot about people with illnesses or near end of life, and I wanted to share the link: https://www.npr.org/sections/health...ight-to-die-logistical-and-ethical-challenges

I think one of the parts that really resonated with me is when the author talked about how often she heard the phrase "I'd rather die like a dog."

"When I started reporting the book, I heard this phrase over and over. And in fact, there are advocacy groups that print this out on kind of laptop stickers. The phrase is I'd rather die like a dog. And a lot of people spoke to me about euthanizing beloved pets in their past. They talked about those euthanasias as being acts of mercy and acts of love. And all they wanted was the same option for themselves, to know that if and when they became sick and frail, if and when they were in unbearable pain, they could have an easy out."

There really is a kind of cognitive dissonance and lack of empathy when as a society (at least in the USA) we afford mercy and compassion to a dog who is suffering but not to another human being.

 

[AreWeWinning]

I have nocturia. It's a condition where you have to wake up frequently during the night to urinate. Sometimes it's so bad, that I literally can't sleep, because I constantly need to pee.

There are a variety of reasons that can cause this. In some cases there is an underlying condition that can be treated, but sometimes it just comes with age, and there is no cure, as in my case. I have been to many doctors, and have tried many different treatments and medications, nothing works.

This has been going on for about 5-10 years now. I'm usually a very resourceful, persistent, and patient person, and I have always managed to solve my problems in life, both bigger and small ones. But with this, I not only can't solve it right now, but I don't have hope that I'll be able to solve it in the future. It will only get worse.

It's crippling me, life is giving me a checkmate. Where I used to be a productive, and if not exactly happy, but at least a normal person, now I just feel like a zombie half of the time. And I often ask what's the point of living life like this? Life feels like a race where I'm added a big bag of extra weight just to make it unfair.

I very much sympathise with the idea that there is sometimes too much pressure on people with various chronic illnesses or conditions. People look at it purely from a psychological point of view, and if a person decides that life is not worth living, they are automatically labelled weak. But no-one talks about the fact that the cards we have been dealt are not the same. Someone who has good genes, good eyesight, excellent hearing, who feels fit and strong all the time, has a huge advantage in life. These people will succeed even if they are mentally weak. While those who suffer from various chronic illnesses and conditions, they can't succeed no matter how strong they are mentally, because they just don't stand a chance. Of course, if someone is ill, they are not automatically strong mentally, and if someone is physically fit, they are not automatically weak mentally. But still, these things are worth to think about...

 

[BrokenBliss]

Outside someone walked by with a dog and it made me think that if an animal were suffering the way people here are suffering, it would be considered cruel and inhumane not to put it down to end its suffering. But for some reason, there is not just an expectation, but a demand that people who are suffering be forced to continue to indefinitely. I don't understand this societal cognitive dissonance when it comes to suffering and death.

I agree. I frequently say that if I were a dog, they'd have put me down years ago. It is merciless and cruel to be forced to endure existing with physical torture that would be considered a war crime in a civilized society.