Venting I just... Can't believe this is happening

[the_fail_man]

Not one thing is guaranteed in this damn life. The thing that irks me is. Without your health, psyical or mental. You are nothing. You become this souless husk that no one really gives a shit about. I had the world at my finger tips. Everyone called me this amazing person. And I am. Yet my life was stolen from me. I had contracted M.E. and would never be the same. I have fought for so long with really only one person by my side. My mother. I've never had a relationship. It's my only wish. But no one wants a bedridden lifeless blob. Instead I'm stuck here. Unable to do shit. While everyone else catches up to me. As my 20s go by. As I lose everything I had worked so hard for in my teens and very early 20s.

When I first got M.E. it was "no, this can't be happening. I can't believe this is happening."

Now it's "I can't believe this is gonna go down like this"


And in a few months it will be "I can't believe this happened"


It can't go down like this! Tell me this story has a happy ending!

 

[FuneralCry]

Existence really is too cruel after all, it truly is so hellish how there is no limit as to how torturous existing can get. But anyway best wishes, it must be really horrible having to suffer in that situation.

 

[Kit1]

I am so sorry that you are living with M.E. I have CFS and was diagnosed about 17 years ago (CFS is flip side of M.E.). Also have CPTSD, autism and string of other issues. Anyway I became almost bedridden by CFS and had a toddler to take care of at the time. Managed to attend a pain clinic where there were patients with CFS or ME. Somehow I learnt to manage my symptoms and have had a couple of relapses since - but the last bad relapse was over 12 years ago. I noticed that others have reported something similar. A good friend of mine who was also a work colleague till she retired (who sadly died this month of something else) also had ME and she managed to manage it. Obviously the experience can be very different for different people. All I am trying to say is that there is a possibility that you might be able to get back on your feet - to a certain extent - I hope you do. Best wishes. Take care

 

[the_fail_man]

I am so sorry that you are living with M.E. I have CFS and was diagnosed about 17 years ago (CFS is flip side of M.E.). Also have CPTSD, autism and string of other issues. Anyway I became almost bedridden by CFS and had a toddler to take care of at the time. Managed to attend a pain clinic where there were patients with CFS or ME. Somehow I learnt to manage my symptoms and have had a couple of relapses since - but the last bad relapse was over 12 years ago. I noticed that others have reported something similar. A good friend of mine who was also a work colleague till she retired (who sadly died this month of something else) also had ME and she managed to manage it. Obviously the experience can be very different for different people. All I am trying to say is that there is a possibility that you might be able to get back on your feet - to a certain extent - I hope you do. Best wishes. Take care

Been bedridden 3 years. Not sure how long I have left. It's a cruel disease. Possibly one of the cruelest since it just keeps the very severly affected like me as close to deaths door. Without... Well, death! Horrible.

 

[Worndown]

Sometimes the bus can hit you, leaving you too damaged to catch it.
I hope you can ease your suffering.

 

[MatrixPrisoner]

It's such a low probability that a human life will be worth living, yet 250 million people every year choose to think they can defy the odds and decide to have children anyways. I just don't get it.

 

[Rubypie41]

Not one thing is guaranteed in this damn life. The thing that irks me is. Without your health, psyical or mental. You are nothing. You become this souless husk that no one really gives a shit about. I had the world at my finger tips. Everyone called me this amazing person. And I am. Yet my life was stolen from me. I had contracted M.E. and would never be the same. I have fought for so long with really only one person by my side. My mother. I've never had a relationship. It's my only wish. But no one wants a bedridden lifeless blob. Instead I'm stuck here. Unable to do shit. While everyone else catches up to me. As my 20s go by. As I lose everything I had worked so hard for in my teens and very early 20s.

When I first got M.E. it was "no, this can't be happening. I can't believe this is happening."

Now it's "I can't believe this is gonna go down like this"


And in a few months it will be "I can't believe this happened"


It can't go down like this! Tell me this story has a happy ending!

I'm in a very similar situation as yourself, so can completely relate.

Long story short in 2019 I developed a very rare condition called patulous eustachian tube dysfunction. This causes you to hear your own voice and breathing unbearably loud to the point where talking almost becomes impossible. I've had various surgeries over the years which haven't completely cured the problem and also introduced further issues. I have relentless clicking in my ear day and night making it difficult to concentrate or even sleep. I also have tinnitus and sharp stabbing pains from within the inner ear. It's a living nightmare to be honest, but from the outside I look completely normal.

I had a great life prior to all these ear problems but now my life is almost nothing. I've been on long term sick for just over 4 months now as things have gotten progressively worse and I barely leave the house.

If these ear problems were taken away I wouldn't have any suicidal thoughts at all, but despite trying everything (surgeries, medications, therapy etc.) nothing has helped.

Is there any possibility your M.E will improve over time?

 

[uzuf86]

Agree with the mental health part. I allowed my mental problems to become bigger and bigger without taking care of them properly and now they ruled my life so much that I just want to ctb

 

[the_fail_man]

I'm in a very similar situation as yourself, so can completely relate.

Long story short in 2019 I developed a very rare condition called patulous eustachian tube dysfunction. This causes you to hear your own voice and breathing unbearably loud to the point where talking almost becomes impossible. I've had various surgeries over the years which haven't completely cured the problem and also introduced further issues. I have relentless clicking in my ear day and night making it difficult to concentrate or even sleep. I also have tinnitus and sharp stabbing pains from within the inner ear. It's a living nightmare to be honest, but from the outside I look completely normal.

I had a great life prior to all these ear problems but now my life is almost nothing. I've been on long term sick for just over 4 months now as things have gotten progressively worse and I barely leave the house.

If these ear problems were taken away I wouldn't have any suicidal thoughts at all, but despite trying everything (surgeries, medications, therapy etc.) nothing has helped.

Is there any possibility your M.E will improve over time?

God this sounds awful. You poor thing.

I doubt it. But some lucky ass mfers have spontaneous remission.

 

[locked*n*loaded]

I'm in a very similar situation as yourself, so can completely relate.

Long story short in 2019 I developed a very rare condition called patulous eustachian tube dysfunction. This causes you to hear your own voice and breathing unbearably loud to the point where talking almost becomes impossible. I've had various surgeries over the years which haven't completely cured the problem and also introduced further issues. I have relentless clicking in my ear day and night making it difficult to concentrate or even sleep. I also have tinnitus and sharp stabbing pains from within the inner ear. It's a living nightmare to be honest, but from the outside I look completely normal.

I had a great life prior to all these ear problems but now my life is almost nothing. I've been on long term sick for just over 4 months now as things have gotten progressively worse and I barely leave the house.

If these ear problems were taken away I wouldn't have any suicidal thoughts at all, but despite trying everything (surgeries, medications, therapy etc.) nothing has helped.

Is there any possibility your M.E will improve over time?

Probably won't help you, but years ago I had stabbing pains in my ears. went to all kinds of doctors for help, but none did. Finally, I stumbled upon an endocrinologist, described to him what was going on, and he said that he'd seen this before. He told me food dyes, in medications I had been taking, and in the food I was eating, was causing the stabbing pains. I had to start getting my medication compounded, and I had to start reading all labels on all foods and stop eating any of it that contained dyes. Sure enough, the stabbing pains went away and I haven't had any since, unless I screw up, which I don't do very often. Seems even the smallest amount of dye, at least for my condition, can cause the stabbing pains. I don't eat any food in restaurants anymore because I can't be sure as to what's in the ingredients they use. It's some kind of endocrine disorder, not sure of the name anymore. My body just doesn't metabolize dyes properly. Not saying this is what's causing your stabbing pains. Dyes are in just about every food out there. I had to quit pretty much all processed foods, even minimally processed. Everything I cook for myself is fresh. They even put dye in stupid pickles. That stabbing ear pain was some of the worst pain I had ever felt in my life. I truly feel for you. I hope you can find some relief.

 

[the_fail_man]

Probably won't help you, but years ago I had stabbing pains in my ears. went to all kinds of doctors for help, but none did. Finally, I stumbled upon an endocrinologist, described to him what was going on, and he said that he'd seen this before. He told me food dyes, in medications I had been taking, and in the food I was eating, was causing the stabbing pains. I had to start getting my medication compounded, and I had to start reading all labels on all foods and stop eating any of it that contained dyes. Sure enough, the stabbing pains went away and I haven't had any since, unless I screw up, which I don't do very often. Seems even the smallest amount of dye, at least for my condition, can cause the stabbing pains. I don't eat any food in restaurants anymore because I can't be sure as to what's in the ingredients they use. It's some kind of endocrine disorder, not sure of the name anymore. My body just doesn't metabolize dyes properly. Not saying this is what's causing your stabbing pains. Dyes are in just about every food out there. I had to quit pretty much all processed foods, even minimally processed. Everything I cook for myself is fresh. They even put dye in stupid pickles. That stabbing ear pain was some of the worst pain I had ever felt in my life. I truly feel for you. I hope you can find some relief.

Damn this sounds like some weird niche version of MCAS or mast cell activation syndrome. The only reason I say that is because of the dyes. I'm glad a doctor was able to find that out. That's impressive. Give him a hug next time you see him for me, lol.

 

[fantastic_unicorn]

I'm in a very similar situation as yourself, so can completely relate.

Long story short in 2019 I developed a very rare condition called patulous eustachian tube dysfunction. This causes you to hear your own voice and breathing unbearably loud to the point where talking almost becomes impossible. I've had various surgeries over the years which haven't completely cured the problem and also introduced further issues. I have relentless clicking in my ear day and night making it difficult to concentrate or even sleep. I also have tinnitus and sharp stabbing pains from within the inner ear. It's a living nightmare to be honest, but from the outside I look completely normal.

I had a great life prior to all these ear problems but now my life is almost nothing. I've been on long term sick for just over 4 months now as things have gotten progressively worse and I barely leave the house.

If these ear problems were taken away I wouldn't have any suicidal thoughts at all, but despite trying everything (surgeries, medications, therapy etc.) nothing has helped.

Is there any possibility your M.E will improve over time?

You poor soul. I resonate with you with this. Neuro problems, invisible, & barely able to keep my head afloat with the symptoms I have. Had a bout of hyperacusis in November and that alone was almost too much for me. Can't imagine what you go through

Probably won't help you, but years ago I had stabbing pains in my ears. went to all kinds of doctors for help, but none did. Finally, I stumbled upon an endocrinologist, described to him what was going on, and he said that he'd seen this before. He told me food dyes, in medications I had been taking, and in the food I was eating, was causing the stabbing pains. I had to start getting my medication compounded, and I had to start reading all labels on all foods and stop eating any of it that contained dyes. Sure enough, the stabbing pains went away and I haven't had any since, unless I screw up, which I don't do very often. Seems even the smallest amount of dye, at least for my condition, can cause the stabbing pains. I don't eat any food in restaurants anymore because I can't be sure as to what's in the ingredients they use. It's some kind of endocrine disorder, not sure of the name anymore. My body just doesn't metabolize dyes properly. Not saying this is what's causing your stabbing pains. Dyes are in just about every food out there. I had to quit pretty much all processed foods, even minimally processed. Everything I cook for myself is fresh. They even put dye in stupid pickles. That stabbing ear pain was some of the worst pain I had ever felt in my life. I truly feel for you. I hope you can find some relief.

I need a neurologist like this. That's incredible.

 

[the_fail_man]

You poor soul. I resonate with you with this. Neuro problems, invisible, & barely able to keep my head afloat with the symptoms I have. Had a bout of hyperacusis in November and that alone was almost too much for me. Can't imagine what you go through

I recognize your name from another thread. Hey. I'm sorry we're all on this ship. This boat. I feel like it's the Titanic or some shit. None of this is easy. None of this is. The people on the outside don't get us. Invisible illnesses are treated so horribly in society for all we have to put up with. Ugh. I just feel for everyone here.

 

[fantastic_unicorn]

I recognize your name from another thread. Hey. I'm sorry we're all on this ship. This boat. I feel like it's the Titanic or some shit. None of this is easy. None of this is. The people on the outside don't get us. Invisible illnesses are treated so horribly in society for all we have to put up with. Ugh. I just feel for everyone here.

Don't get us at all. Ex broke up with me over this.. well I kinda forced his hand when I became suicidal. Good dude. But he was complaining about a sore throat today and how he can't take this and I was like ok true sore throats suck but you have no idea…. Lol.

 

[locked*n*loaded]

Damn this sounds like some weird niche version of MCAS or mast cell activation syndrome. The only reason I say that is because of the dyes. I'm glad a doctor was able to find that out. That's impressive. Give him a hug next time you see him for me, lol.

Unfortunately, he moved away to another locale to practice. It's been a while, but the name you said for the possible syndrome isn't ringing a bell. Yeah, I got lucky finding him. Eight other doctors before him, all kinds of tests, and they all thought I was making it up, or nuts.

 

[the_fail_man]

Don't get us at all. Ex broke up with me over this.. well I kinda forced his hand when I became suicidal. Good dude. But he was complaining about a sore throat today and how he can't take this and I was like ok true sore throats suck but you have no idea…. Lol.

Oh lord yeah people will bitch about anything and everything health related. It's all relative. When you are healthy and have nothing to focus on a bruise is a fucking amputation to them. And we are like "hmm, an amputation has a good chance of killing me so... Sounds nice"

 

[fantastic_unicorn]

Oh lord yeah people will bitch about anything and everything health related. It's all relative. When you are healthy and have nothing to focus on a bruise is a fucking amputation to them. And we are like "hmm, an amputation has a good chance of killing me so... Sounds nice"

Needed that laugh thanks

 

[Raindancer]

Oh yes, I relate. I watched a documentary on ME, I am sorry you have this awful disease. I have an autoimmune disease that was missed and was bed-ridden for 4 years and still spend a lot of time being down. No one understands unless they have been through it.

 

[the_fail_man]

Needed that laugh thanks

I try. M.E. hasn't knock on wood stolen my personality. Probs the only thing keeping me from ctb. Glad I could make ya laugh xD