chronic illness is making me lose my sanity

[sincerelysad]

every single day i wake up in some form of discomfort or agony. i don't remember the last time i was able to wake up and simply get out of bed and start my day. im constantly sick, my quality of life is in the toilet because i can't do anything without getting sick. it's embarrassing, it's debilitating, and it's so fucking isolating.
the reasons i want to ctb are plentiful, but the driving force is being and feeling fucking sick like this all the time. always in pain. always nauseous. always exhausted. always vomiting. always falling.
it just. never. ends.
no one can figure out what's wrong with me, no matter the amount of tests or procedures or doctor appointments i make and force myself to go through in hopes of maybe, maybe finding the reason why im suffering like this.
there is so fucking much on my plate and a majority of it im stuck with for an extremely long time.
i wish it was easier to ctb. i am so fucking drained.

 

[lilin]

I feel you. Chronic illness is a bitch. Doctors dismiss me and are not helpful at all. I wish I had something better to say but honestly that's one of my biggest reasons for planning ctb too Nobody should have to go through this. It's so unfair and it's not even a life. Just constant pain, suffering and worrying if tomorrow will be even worse

 

[sincerelysad]

I feel you. Chronic illness is a bitch. Doctors dismiss me and are not helpful at all. I wish I had something better to say but honestly that's one of my biggest reasons for planning ctb too Nobody should have to go through this. It's so unfair and it's not even a life. Just constant pain, suffering and worrying if tomorrow will be even worse

and no one fucking gets it either. they don't realize that every day is like playing russian roulette— will it be worth it waking up today? or will i be wishing i was dead instead every 15 seconds?
i'm so tired of people telling me to go to the doctor. i'm so tired of people telling me it'll get better. im supposed to be in the best health of my life at the age im at right now— i should be in my prime! it literally will only get worse from here on out and that is something that a), i am having an incredibly hard time coping with, and b), no one even understands to be true anyway.

i can't help but hope that whatever is going on inside of my body is terminal. because maybe then they'd listen.

 

[Szinuus]

I also suffer from chronic pain - neuropathy. Constant pain and bad feeling. And waiting till the night when I can finally rest from this torture for a while.

 

[sincerelysad]

I also suffer from chronic pain - neuropathy. Constant pain and bad feeling. And waiting till the night when I can finally rest from this torture for a while.

god im so sorry </3 i hope you can find your peace someday

 

[FuneralCry]

It's beyond horrific how this life can potentially torture us so much, and it's just so wrong how the world that we exist in makes suicide as difficult as possible for us, it's insane to see suicide as being worse than any kind of suffering. Your wish to be gone from this world is completely understandable, as it makes sense not wishing to be trapped here when you will just suffer more and more as time goes on. I do hope that you find the freedom that you wish for.

 

[wait.what]

I definitely know this story…I'm finally old and ill enough that doctors have decided that maybe I'm not just making it all up to inconvenience everyone. Yay? I guess? I'd actually be really mad if it was a situation where something could have been done if the problems had been caught early enough, i.e., when everyone was rolling their eyes at me and my "drama." There really wasn't anything anyone could do, though.

 

[myownpetvirus]

It's disgusting how much people write off chronic illness as "liking attention" or "seeking sympathy". It's like you're already suffering and then people are pretending your suffering isn't real.

 

[sincerelysad]

I definitely know this story…I'm finally old and ill enough that doctors have decided that maybe I'm not just making it all up to inconvenience everyone. Yay? I guess? I'd actually be really mad if it was a situation where something could have been done if the problems had been caught early enough, i.e., when everyone was rolling their eyes at me and my "drama." There really wasn't anything anyone could do, though.

god, the attention seeking implications are what hurt the most i think. why would i want attention for a fake crippling disability? and not anything else at all? it doesn't make any sense.

 

[lifeisbutadream]

I also suffer from chronic pain - neuropathy. Constant pain and bad feeling. And waiting till the night when I can finally rest from this torture for a while.

Me too.

 

[TheDog_]

Me too. I'm sorry

 

[anguila_anguila]

That sucks that you are having to go through that.
Quick question, do you know if the doctors tested you for MS (multiple sclerosis)? MS can produce all sorts of weird and not so wonderful symptoms, and it tends to be different from person to person.

 

[sincerelysad]

That sucks that you are having to go through that.
Quick question, do you know if the doctors tested you for MS (multiple sclerosis)? MS can produce all sorts of weird and not so wonderful symptoms, and it tends to be different from person to person.

they have not, although my mom does have MS and is actually blind in one eye because of it.
is it more likely to be genetic?

 

[anguila_anguila]

they have not, although my mom does have MS and is actually blind in one eye because of it.
is it more likely to be genetic?

There is some genetic component to it, but not as strong as other conditions. However, if one family has it, then it does give you increased risk.
One of the reasons that MS is so difficult to diagnose is that not everyone gets the same symptoms, so any seemingly random symptoms, especially nerve-related should be investigated for MS or peripheral neuropathy (a similar disease that affects the nerves in the body rather than the nerves in the brain and spine).
I have MS - it went undetected for a long time because the symptoms weren't recognisable as MS. I only got diagnosed after one particular attack when I had numbness and tingling spread through my left side and I could no longer go to the toilet properly, well that, and my perseverance in keep going to the doctor and pushing until someone eventually knew what it was. At that time I got bounced from the stroke department to orthopedics to neuronal, in two different hospitals, before the neurologist in the second hospital recognised the possible cause.

 

[HadItAll]

I've also got chronic illnesses (multiple) which make my daily activities painful or limited. It is 90% of why I want to CTB and the rest 10% are problems my illnesses have indirectly caused me.

 

[sincerelysad]

There is some genetic component to it, but not as strong as other conditions. However, if one family has it, then it does give you increased risk.
One of the reasons that MS is so difficult to diagnose is that not everyone gets the same symptoms, so any seemingly random symptoms, especially nerve-related should be investigated for MS or peripheral neuropathy (a similar disease that affects the nerves in the body rather than the nerves in the brain and spine).
I have MS - it went undetected for a long time because the symptoms weren't recognisable as MS. I only got diagnosed after one particular attack when I had numbness and tingling spread through my left side and I could no longer go to the toilet properly, well that, and my perseverance in keep going to the doctor and pushing until someone eventually knew what it was. At that time I got bounced from the stroke department to orthopedics to neuronal, in two different hospitals, before the neurologist in the second hospital recognised the possible cause.

thank you so so much for this response. this is definitely making me wonder if i do indeed have it, considering i've been having some numbness and tingling in some areas, but i have 0 pinched nerves or slipped disks or anything like that. body MRIs look fine. i don't think they've ever seen a lesion on any of my brain MRIs in the past but who knows?

 

[itsallpointless]

Same. I suffer from osteoarthritis, spondylitis, eczema and undiagnosed but suspect symptoms of sma and parkinson's. I am ambivalent about wanting to live and not wanting to live, but surely being physically healthy would make it much easier to carry on. All those people who say psychological abuse can even be compared with physical abuse don't know what they are talking about. Being physically ill is horrible

 

[anguila_anguila]

thank you so so much for this response. this is definitely making me wonder if i do indeed have it, considering i've been having some numbness and tingling in some areas, but i have 0 pinched nerves or slipped disks or anything like that. body MRIs look fine. i don't think they've ever seen a lesion on any of my brain MRIs in the past but who knows?

MRIs alone aren't always enough for a diagnosis. It is possible to have symptoms of the disease without showing any obviously lesions in the brain/spinal cord on an MRI. Quite severe damage needs to occur in one location for it to appear on MRI, and not all MRIs are performed with contrast (which also helps the lesions to appear more visibly). It doesn't take that much damage for tingling /pain / loss of function etc. to occur, depending on what is affected.
The neurologist would have to do a lumbar puncture to take fluid to test for the presence of antibodies in your spinal fluid.

I'm glad I could help - this might sound weird, but my diagnosis was actually a relief at the time. I now knew what was wrong with me, and it wasn't just what everyone goes through as they get older (dumb as it sounds, I really thought some of my symptoms were just age related). Anyway, I did a tonne of research and managed to find a place for relatively new treatment which I had in 2017 - it actually seems to have stopped the disease from getting worse, although some of the damage is still there.
If you have any other questions about it, just ask and I can try to help. I wish you luck trying to get it sorted.

Same. I suffer from osteoarthritis, spondylitis, eczema and undiagnosed but suspect symptoms of sma and parkinson's. I am ambivalent about wanting to live and not wanting to live, but surely being physically healthy would make it much easier to carry on. All those people who say psychological abuse can even be compared with physical abuse don't know what they are talking about. Being physically ill is horrible

I've experienced both, and I would still say the psychological side is underrated. There are also studies showing that the effects of both types are comparable.

With my disease, I had months when I couldn't walk properly, I had months when getting in the shower would feel like needles in my skin, I still have physical problems that won't go away, but the worse aspect is the hopelessness and feeling that there is no point in the future, the memory loss and also not feeling like myself anymore - I don't have memories like I used to, I know I did certain things, but I don't feel particularly emotionally connected to them.I would rather have the physical problems back, rather than the current mental ones.

 

[KuriGohan&Kamehameha]

I'm so sorry you have to deal with this day in and day out. It's exhausting, demotivating, and wears one out over time to keep trudging on in the face of endless pain, especially as a younger person.

If you're still uncertain about the possibility of having MS, I agree with anguila that it might be worth it to have another MRI with contrast or lumbar puncture, as traditional non-contrast MRIs aren't as great at picking up on small scale damage. It can take a long time for any noticeable pathology/lesions to show up on an MRI. Different illnesseses can chase brain abnormalities that won't show up on MRIs however, I have permanently blurry vision and brainfog, impaired memory, attention deficits, and other cognitive dysfunctions, and the cause of this can't be seen on imaging. It's often assumed I must be faking these symptoms since at the time of my last MRI, there was no remarkable brain atrophy.

When it comes to neurological problems though, unfortunately this field is still in the stone ages and progresses with research slowly- most of the money at the moment is going to Alzheimer's, FTD, and things of that ilk, which can make it difficult to have hope if your disease has gone under the radar and is not getting as much attention in the research world in regards to the development new diagnostics and treatments.

I really empathise with you and many others in this thread, we are all in a similar boat. It's godawful to lose your health and vitality like this. It's been over 6 years now since I developed chronic fatigue and pain, and it's completely ruined my life. I'm in a similar boat to you OP where I don't have exact words to describe what I'm going through, but I know that I have CFS, degenerating spinal discs, sciatica, raynauds, IBS, and likely neuropathy past the knee in both legs which is permanent. I have PTSD also, and can sympathise with you there, it's an absolute bitch to deal with on top of the solely somatic problems.

I was a teenager when all this started and now I'm approaching my mid 20s. It's gotten worse and worse for me over time, while the world around me expects me to suddenly perk up, become more energetic, and learn to cope with pain, but I just can't. I've tried countless remedies too and nothing makes a dent in any of this. There are so many times when it's like knives in my back, and my legs are permanently tingly, burning, and numb. Everything is a haze because my vision is messed up so badly. It's hard for someone to imagine our situations unless they've lived it in the day to day.

Sending you love, you don't deserve any of this. Fuck chronic illnesses.

 

[LaVieEnRose]

I'm so sorry you have to deal with this day in and day out. It's exhausting, demotivating, and wears one out over time to keep trudging on in the face of endless pain, especially as a younger person.

If you're still uncertain about the possibility of having MS, I agree with anguila that it might be worth it to have another MRI with contrast or lumbar puncture, as traditional non-contrast MRIs aren't as great at picking up on small scale damage. It can take a long time for any noticeable pathology/lesions to show up on an MRI. Different illnesseses can chase brain abnormalities that won't show up on MRIs however, I have permanently blurry vision and brainfog, impaired memory, attention deficits, and other cognitive dysfunctions, and the cause of this can't be seen on imaging. It's often assumed I must be faking these symptoms since at the time of my last MRI, there was no remarkable brain atrophy.

When it comes to neurological problems though, unfortunately this field is still in the stone ages and progresses with research slowly- most of the money at the moment is going to Alzheimer's, FTD, and things of that ilk, which can make it difficult to have hope if your disease has gone under the radar and is not getting as much attention in the research world in regards to the development new diagnostics and treatments.

I really empathise with you and many others in this thread, we are all in a similar boat. It's godawful to lose your health and vitality like this. It's been over 6 years now since I developed chronic fatigue and pain, and it's completely ruined my life. I'm in a similar boat to you OP where I don't have exact words to describe what I'm going through, but I know that I have CFS, degenerating spinal discs, sciatica, raynauds, IBS, and likely neuropathy past the knee in both legs which is permanent. I have PTSD also, and can sympathise with you there, it's an absolute bitch to deal with on top of the solely somatic problems.

I was a teenager when all this started and now I'm approaching my mid 20s. It's gotten worse and worse for me over time, while the world around me expects me to suddenly perk up, become more energetic, and learn to cope with pain, but I just can't. I've tried countless remedies too and nothing makes a dent in any of this. There are so many times when it's like knives in my back, and my legs are permanently tingly, burning, and numb. Everything is a haze because my vision is messed up so badly. It's hard for someone to imagine our situations unless they've lived it in the day to day.

Sending you love, you don't deserve any of this. Fuck chronic illnesses.

As so incredibly little as it's probably worth, I'm always in awe at what you've managed to withstand.

 

[sincerelysad]

MRIs alone aren't always enough for a diagnosis. It is possible to have symptoms of the disease without showing any obviously lesions in the brain/spinal cord on an MRI. Quite severe damage needs to occur in one location for it to appear on MRI, and not all MRIs are performed with contrast (which also helps the lesions to appear more visibly). It doesn't take that much damage for tingling /pain / loss of function etc. to occur, depending on what is affected.
The neurologist would have to do a lumbar puncture to take fluid to test for the presence of antibodies in your spinal fluid.

I'm glad I could help - this might sound weird, but my diagnosis was actually a relief at the time. I now knew what was wrong with me, and it wasn't just what everyone goes through as they get older (dumb as it sounds, I really thought some of my symptoms were just age related). Anyway, I did a tonne of research and managed to find a place for relatively new treatment which I had in 2017 - it actually seems to have stopped the disease from getting worse, although some of the damage is still there.
If you have any other questions about it, just ask and I can try to help. I wish you luck trying to get it sorted.

I've experienced both, and I would still say the psychological side is underrated. There are also studies showing that the effects of both types are comparable.

With my disease, I had months when I couldn't walk properly, I had months when getting in the shower would feel like needles in my skin, I still have physical problems that won't go away, but the worse aspect is the hopelessness and feeling that there is no point in the future, the memory loss and also not feeling like myself anymore - I don't have memories like I used to, I know I did certain things, but I don't feel particularly emotionally connected to them.I would rather have the physical problems back, rather than the current mental ones.

this information is so helpful!!!! thank you so much. im going to make some calls and see what i can get looked at.
seriously, thank you

I'm so sorry you have to deal with this day in and day out. It's exhausting, demotivating, and wears one out over time to keep trudging on in the face of endless pain, especially as a younger person.

If you're still uncertain about the possibility of having MS, I agree with anguila that it might be worth it to have another MRI with contrast or lumbar puncture, as traditional non-contrast MRIs aren't as great at picking up on small scale damage. It can take a long time for any noticeable pathology/lesions to show up on an MRI. Different illnesseses can chase brain abnormalities that won't show up on MRIs however, I have permanently blurry vision and brainfog, impaired memory, attention deficits, and other cognitive dysfunctions, and the cause of this can't be seen on imaging. It's often assumed I must be faking these symptoms since at the time of my last MRI, there was no remarkable brain atrophy.

When it comes to neurological problems though, unfortunately this field is still in the stone ages and progresses with research slowly- most of the money at the moment is going to Alzheimer's, FTD, and things of that ilk, which can make it difficult to have hope if your disease has gone under the radar and is not getting as much attention in the research world in regards to the development new diagnostics and treatments.

I really empathise with you and many others in this thread, we are all in a similar boat. It's godawful to lose your health and vitality like this. It's been over 6 years now since I developed chronic fatigue and pain, and it's completely ruined my life. I'm in a similar boat to you OP where I don't have exact words to describe what I'm going through, but I know that I have CFS, degenerating spinal discs, sciatica, raynauds, IBS, and likely neuropathy past the knee in both legs which is permanent. I have PTSD also, and can sympathise with you there, it's an absolute bitch to deal with on top of the solely somatic problems.

I was a teenager when all this started and now I'm approaching my mid 20s. It's gotten worse and worse for me over time, while the world around me expects me to suddenly perk up, become more energetic, and learn to cope with pain, but I just can't. I've tried countless remedies too and nothing makes a dent in any of this. There are so many times when it's like knives in my back, and my legs are permanently tingly, burning, and numb. Everything is a haze because my vision is messed up so badly. It's hard for someone to imagine our situations unless they've lived it in the day to day.

Sending you love, you don't deserve any of this. Fuck chronic illnesses.

fuck chronic illness is right. im so sorry you've been forced thru this bullshit. you don't deserve one bit of it and none of it is fair. we all deserve peace and comfort.