ME/CFS or death in life

[Callie Arcale]

I have severe ME/CFS and GAD. I've had GAD ever since I can remember and ME/CFS since I was 10-ish.

I've been living in push-crash cycles my whole life because I didn't know what was wrong with me. Neither did the countless doctors I've been to, my family or anyone around me. There was no name for what I had. Finally in my late 30s I was properly diagnosed with one of the most debilitating diseases: ME/CFS

I feel sick and I am in pain 24/7. It's impossible to put in words what I mean by "sick" but I can only describe it as "dying", like every cell in me is dying. It's not a psychosomatic disease. It is a real, physical impairment. Researchers are not sure if it's an inflammation in the brain, or mithocondrial malfunction or a hypometabolic problem. But whatever it is, it destroys the organism.

ME/CFS comes in many "flavours": mild, mild-moderate, moderate-severe and very severe. The very severe stage is when you can't even eat or drink anymore so you need to be tube fed.

I have now moderate-severe ME/CFS. I am unable to walk because I am so sick, I can't stand light, noise, touch or smells. I can still eat by myself and drink water.

But the slightest effort, the slightest stress causes me to crash and the sickness becomes so overwhelming that I am almost dead. I feel so sick that I can't move, think or do anything other than… suffer.

I live in death and with death every day. I had one attempt to ctb, but I could not go through with it. If my ME/CFS becomes very severe I won't be able to commit suicide and god knows how many years of living death I'll have to go through before I finally take my last breath.

This post is for everyone who finds this site and suffers from ME/CFS. I know you understand me. And I understand you. I know you also live in death and despair. Our voices are unheard, we suffer in silence, unknown, missunderstood, forgotten…

But one day it will be over. Everything dies.

 

[Celerity]

I'm so sorry. This is a shitty world we live in.

 

[UseItOrLoseIt]

Oh man... This must be so hard. I wish I could hug you right now, without a word, make you pancakes or something Sorry, that's the best I could come up with. But words just seem so hollow now.

Big hug

 

[Callie Arcale]

Oh man... This must be so hard. I wish I could hug you right now, without a word, make you pancakes or something Sorry, that's the best I could come up with. But words just seem so hollow now.

Big hug

This is honestly the sweetest message I have ever gotten in my whole life. "Make you pancakes or something"… I will never forget these words. You just made me cry and smile at the same time.

Big hug back

 

[UseItOrLoseIt]

This is honestly the sweetest message I have ever gotten in my whole life. "Make you pancakes or something"… I will never forget these words. You just made me cry and smile at the same time.

Big hug back

I'm glad. I really am.. I meant it

 

[FuneralCry]

This life can be so cruel, the human body is an awful thing and is capable of causing us so much pain. I'm sorry you have to live with this. I wish you well.

 

[KuriGohan&Kamehameha]

I have this horrible illness too. It is so dehabilitating and miserable. I find people in CFS support groups often do not understand how ugly things can get when one's symptoms err towards the severe end of the spectrum.

You are not alone. Most people sadly will not comprehend what you have to endure on a daily basis, they will not have insight into what it takes from you- CFS is a parasite that keeps taking and taking, until our energy levels and vitality never return to baseline.

I wish those living in ignorance could hear your pleas. You don't deserve to suffer like this. Every doctor, therapist, beurocrat, funding committee, and researcher who mocks the agony of those with ME/CFS should have to experience even a day of what we have to go through. Their perspective would change in an instant.

I hope you sleep well tonight, forgetting about this all for awhile. I find sleep is the best part of the day for people like us, because in the astral realm (or ths void) one no longer has to experience these horrifying symptoms.

 

[DisillusionedDragon]

Ever since hearing about CFS maybe two years ago I thought it explained what was happening to me really well.. But I'm just forced to function with this small amount of energy, always tired/exhausted to a certain extend, struggling through life, desperately trying not to exceed my energy contingent because it would lead to absolute misery. But things have been getting worse.

If I really do have CFS I am currently experiencing the worst PEM I ever have. I pushed myself far too hard and now have been mostly bed bound for over a week. I know objectively that's not a long time, but it just feels like much longer. The feeling of exhaustion/weakness/dying/??? is indescribable, the brain fog has started to lift for more extended periods of time, but now I'm getting headaches. It can take hours until I find that I have the energy to do something, but after a short period of time, sometimes not even five minutes, the exhaustion hits me again and I can do nothing but lie in bed and close my eyes.

I barely manage to feed myself, but even after standing for a little while I get weaker and weaker, start feeling dizzy. my heart is beating faster and my breathing getting more labored. But I just need to push through it, because there is no one to take care of me except for myself.

I want to do things but I literally can't. I'm just stuck in bed, barely able to do something on my computer from time to time because it is exhausting as well.

I have now actually found a doctor who takes me seriously, but so far there really doesn't seem to be anything wrong with my body. But I guess years of trauma and living large portions of your life in survival mode will eventually show itself one way or another. I have several things I'm supposed to get checked out now with specialists, but honestly, I don't really feel like this is an issue with any specific organs or such.

I'm honestly miserable. Miserable and scared that this time I really "broke" something and this is now a more permanent state and will not have gotten better in a week from now. I'd really appreciate if I could write with someone who has experienced similar things.

I can't imagine how horrible moderate-severe CFS must be and I'm so sorry you have to deal with it @Callie Arcale and @KuriGohan&Kamehameha.

Sorry if things are a little disorganized, it's really difficult to concentrate.

 

[_Seeking]

I have this too, it started 20 years ago after I had Lyme disease. It is so difficult to live with invisible ilnesses, it's a constant battle between getting things done that I need to and crashing from overexertion. I am so tired of the judgement, I am terrible at work and miss a lot and I know that people assume I am just lazy. I keep all of this in and don't complain but it feels like such a burden I can no longer bear. I have no friends because I don't have the energy beyond work, it is a very isolating illness.

 

[ShatteredSoul]

M.E since 14yrs old ,now fibromyalgia too and also severe tremors and neurological symptoms so I'll have another thing to contend with soon. I'm 37 now and decided I need to ctb before age and having nobody brings more problems. I'm lonely and heartbroken.

 

[Angst Filled Fuck Up]

M.E since 14yrs old ,now fibromyalgia too and also severe tremors and neurological symptoms so I'll have another thing to contend with soon. I'm 37 now and decided I need to ctb before age and having nobody brings more problems. I'm lonely and heartbroken.

Very similar boat. 38 now, chronic fatigue, lightheadedness, twitching/jerking, mind and body just not working right. Judgement from others, no doctor help or diagnosis. Can't imagine having much more to contend with.

 

[ShatteredSoul]

Very similar boat. 38 now, chronic fatigue, lightheadedness, twitching/jerking, mind and body just not working right. Judgement from others, no doctor help or diagnosis. Can't imagine having much more to contend with.

It's horrendous. I'm now being treated for recurrant candida infections, told I have low b12 and folic which the drs said I've had for months but never told me! They're also testing my thyroid as I'm getting severe heat intolerance and sweating. MRI coming up to see if any scarring has appeared since my last one as I have multiple sclerosis like symptoms.
I have functional and intention tremors too.
Where will it end?? X

 

[Angst Filled Fuck Up]

It's horrendous. I'm now being treated for recurrant candida infections, told I have low b12 and folic which the drs said I've had for months but never told me! They're also testing my thyroid as I'm getting severe heat intolerance and sweating. MRI coming up to see if any scarring has appeared since my last one as I have multiple sclerosis like symptoms.
I have functional and intention tremors too.
Where will it end?? X

It's a nightmare. Worse when they really can't find anything. I've had MRIs, CTs, X-rays, blood and hormone tests, spinal taps, EMG, the works. All I've got is low vitamin D, orthostatic intolerance, and carpal tunnel. None of it explains my many symptoms. I guess I get to pick my own illness since Dr. Google is all I have left.

I'm sorry to hear you are having such a hard time too. This life is such a crapshoot. And if you are unlucky, there is the potential for pretty much unlimited suffering.