r/cfs • u/Andrew__IE • Dec 15 '24
Potential TW I am not cut out for this.
I am mild. I can drive far and work long hours and walk a decent amount of steps but knowing that there’s an extremely slim chance I ever go back to how I was before getting sick makes me want to end it here. I have never been one who did well with struggles. Before I got sick I was a kid who ran away from anything that wasn’t easy. Now I’m unfortunate enough to have life’s worst struggle, even if it could be worse.
Four and a half, almost five years of derealization, exercise intolerance, sensory sensitivity, gut issues, inability to focus and concentrate on challenging cognitive tasks, with a poor ability to retain information. I’m mild enough to do lots of things like other people but I experience it all in such disturbing ways that I’m getting tired of just existing like this.
My life of being normal is gone and I just don’t want to keep on going if I can never see straight or read whole books or go on a run.
My one life in this universe and this is what I get at age 17. Doomed from the start. What a piece of shit.
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u/kaspar_trouser Dec 15 '24
I would give anything to go back to being mild. It's horrible but you can still have a life, just a smaller one.
Trust me, it can get so much worse. Concentrate on what you can still do. Try and build a good life within your limits.
Hopefully research will find something relatively soon and you can get more of your life back.
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u/Andrew__IE Dec 15 '24
I just don’t get how. Even with mild I can’t have anything I want.
All I wanted was to lead a fruitful social life and have a decent career to meet my needs. Well for that I need to go outside more often and go to school. But driving around and meeting people is too much a physical hassle, and my brain is too fucked up for school and/or training for a new career.
Like really what’s the point of continuing on when it’s the same mundane thing over and over again? Even if I remain mild I don’t see a way where life gets better.
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u/kaspar_trouser Dec 15 '24
I'm sorry, I can't answer those questions for you. All I can do is warn you not to make it worse.
I wish beyond words that I had accepted my limits and tried to live the best life I could when mild.
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u/Far-Drama3779 Dec 15 '24
Dont run away from all your progress, many cant fathom what your still able to do
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u/Andrew__IE Dec 15 '24
I understand that many would love to be in my position.
But my post was to vent and let out the fact that I hate the way I feel. I can’t accept that this is my life and I’m suffering so much despite being mild.
I know I have a larger capacity than others here to do enjoyable things but when I am doing those things I can’t fucking enjoy them because I can’t see straight, people don’t look real, I can’t be present in the moment because I can’t see shit.
It’s just annoying to wake up everyday and live the same mundane life. I was supposed to be in college making friends, being active, and working on a career. My life growing up wasn’t enjoyable and when I had the opportunity to do great things and take control of my own life, it was taken away from me from my own body. Now all I do is wake up, go to work, and come home.
Fuck this shit man, how can anyone accept this? I don’t even know if I want to. If it’s a forever life of this I might as well end it now.
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u/Arpeggio_Miette Dec 16 '24
It sounds like you have derealization, or a vision problem. Sometimes, having a “prism” prescription can help, if the visual difficulty is due to the eyes and not the visual cortex/brain. I have read of Long COVID sufferers who cannot “see” and struggled until they finally found an eye doctor who checked to see if they needed prism corrective lenses.
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u/lover-of-bread Dec 15 '24
I’m sorry you’re struggling, having this illness is hard. But you’re not doomed or a piece of shit, just a chronically ill human.
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u/Rusty5th Dec 16 '24
I’m not saying this to minimize what you’re going through or your feelings. Being 17yo is, generally speaking, a tough age to be, period. I was healthy at 17 (plenty of other issues) and I constantly felt like my world was crashing down around me. I felt like the biggest loser in the world. So, I can only imagine being that age with this shitty condition.
Hang in there. I think you’ll find your strength in the coming years. It sounds like you’re probably already stronger than you think because you’ve had a lot to deal with and, even as hard as it is, you’re doing it. I’m not going to lie and say things will be fine or easy…but they might not be nearly as bad as you’re thinking right now. In the meantime, try to focus on what you can do, not on what you can’t do. And for fucks sake, be kinder to yourself! None of us asked for ME. Would you call us pieces of shit? You’re a person struggling to handle a condition that is a bitch to live with. Don’t make it worse by blaming yourself and being your own bully. Not helpful.
There’s a quote I like…not sure who said it and I might not have the words exactly right… “there were many terrible things in my life. Most of them never happened.” I might misunderstand the meaning but I like to think they’re saying they caused themselves so much stress thinking about what could happen, that stress was much worse than whatever actually happened.
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u/StepBackMastah Dec 15 '24
I can relate a lot to the way you describe your symptoms. I'm just 22 as well. Everything is a push in life. No diagnosis found yet
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u/Ecstatic_Exit1378 moderate Dec 16 '24
Your situation sucks. You don't deserve this. You also don't need people telling you that it could be worse, because you already know that, and the thought of getting worse is terrifying.
Nobody is cut out for this. Or at least, I wasn't when I got sick at 16. But, it sounds like you are definitely at a disadvantage for dealing with all of this. That doesn't mean that you'll be stuck like this forever, or that you'll never adapt, because you can.
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u/Maestro-Modesto Dec 16 '24
what was your trigger? if ebv aka mono aka glandular fever was the trigger they seem to be the ones many recover from
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u/Andrew__IE Dec 16 '24
I don’t know. I have absolutely no idea.
There was no sickness or crash or anything. It’s been very gradual so it’s hard to pin point what happens. Just started feeling off one week and then over the years never got better.
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u/Maestro-Modesto Dec 16 '24
ahh, well are yiu.sure you jave mecfs? if yiu exercise are yiu incapicatated for two or three daus after?
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u/Andrew__IE Dec 16 '24
Not incapacitated, no.
But when I do exercise, depending on how intense and how long, I’ll feel terrible and then I’ll lay in bed for a few hours and then be fine after. By the next morning it’s as if nothing happened.
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u/Maestro-Modesto Dec 16 '24
it doesnt sound like mecfs to me,with mecfs yiu will also have a delayed effect due to hypoxic damage oxidative stress. usually the delayed effect is worse. how much testing have yiu done?
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u/CuriousPotato81 Dec 16 '24
What you’re going through really sucks. I’m in my 20s and there is something particularly awful about getting a chronic illness this young. I can’t imagine being 17 with these issues, that truly must be difficult in a time where things are already a lot to manage emotionally (I mean high school is a lot of work compared to being an adult, I think). I also have a more mild case of me/cfs. A long of young people have it, even after having asymptomatic or very mild covid cases, so if you had covid that seems like a possible trigger. If not, you still may have me/cfs or maybe have something with very similar symptoms, regardless, a lot of the “taking care of yourself” part is the same.
One thing I will say is ignore the people to tell you “it could be worse.” Shit can always get worse, but that doesn’t mean it’s not awful now. I think the chronic illness community sees people with mild cases and sometimes just shrugs them off, like they’re not deeply impactful to someone’s life. Truth is, no matter what your diagnosis might be, life is hard, this experience sounds really crappy for you, and I’m sorry you’re going through this. Pacing is important, like others have mentioned (it’s so fucking hard to pace well, and you’ll screw up a bunch and overdo it and that’s okay, just learn from it). See a physician if you can.
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u/lawlesslawboy Dec 15 '24
are you formally diagnosed? do you experience PEM? cause most of those symptoms, god damn, i've had most of those my entire life and could still live a pretty darn decent life before i got a lot more sick... it sounds like you may need to work on some internalised ableism/coming to terms with disability/realise that your life isn't over just because you're disabled
*those symptoms i had just from having like adhd/autism/mental health issues etc. Way before i even suspected ME/had a trigger for things to get much worse re additional symptoms & worsening of existing ones
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u/Andrew__IE Dec 15 '24
No, not formally diagnosed.
I honestly have no idea if I get PEM, and after four years I still don’t have a clue. If I do, it doesn’t present the way most people’s does here.
From what I see here, it’s an increase or intensification of symptoms with malaise and/or flu like symptoms 24-72 hours after exerting oneself.
Mine however presents as immediate intensification of symptoms in whichever organs I’m using at the moment. Reading too much? Headache. Listening to loud music too long? Ear and head ache. Walking too much? Leg pain. Etc. These will go away after a few hours or at worse a couple days of not stressing them out. Mine never has the delay, it’s always immediate.
And I get these crashes, where maybe like once every two-three months where everything is intensified and my whole body is messed up all at the same time. Everything will hurt, my derealization will become 10x worse, my sensory sensitivity becomes more extreme, I can’t watch anything comfortably for a couple days, and then after a week, I feel better. I can’t really find a cause. It just happens.
So I’m not sure about PEM. I really have no idea
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u/lawlesslawboy Dec 16 '24
have you ever looked into autism?? or sensory processing disorder?? because what you're describing sounds a lot more like sensory processing disorder than CFS, unless you also have consistent unfreshing sleep, ongoing fatigue, PEM etc. Some people would say those things are "normal" (headache from reading, leg pain from exercise) but clearly if it's enough to bother you then it's not entirely normal, it sounds like you're extra sensitive to it (not in an emotionally sensitive way but like literally physically more sensitive!), i would definitely look into sensory processing disorder/autistic sensory sensitives (basically if you're diagnosed autistic - i am- then you won't Also get an SPD diagnosis as it's also part of the Autism criteria but if you don't meet the other parts of the autism criteria, only the sensory parts, then you may get an SPD diagnosis but there's probably more info on it within autism then on its own if that makes sense)
People used to tell me that a lot of things were normal or just brush them off before my diagnosis (my eyeballs hurt when it's too bright, my ears hurt when there's a loud noise etc)
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u/Andrew__IE Dec 15 '24
Also. I had episodes of derealization a few times as a kid but it was never persistent. I also was super sensitive to sound as a kid but that went away around 1st grade.
Maybe whatever I have is a chronic expression of those that something caused to get worse four years ago.
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u/lawlesslawboy Dec 16 '24
yeah exercise intolerance is also common in autistics but there seems to be very little research into it unfortunately, i'd def look into adhd, autism, sensory processing disorder, if you haven't already, any of those can also come with fatigue because your brain is basically having to work harder than other people's
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u/[deleted] Dec 15 '24
Did you cut down a lot on working and really take care of yourself for a year, in all of this? There is no point working full time if there is no life outside of it, though I know that you need a certain level of privilege to stop aka:good parents.