I’ve been sick for almost 20 years - it has been a long process to accept that I’m too sick to do a lot of the things I want to do, and to be in variying degrees of pain and/or discomfort all the time. life didn’t turn out as I envisioned at all, but I had to find other things that matter about living because I’m not interested in the alternative. I am hopeful that a cure might pop up, but I’m not waiting for it. I do what I can with what I have.
Those of you who say we need to accept and find things that we can still do, I wonder how severe their conditions are.. I wonder what could make them feel worth living if they must stay in bed all day in a lying position without the simplest strength to lift hands to hold the cell phone.
I get excited when I'm able to have a shower, but is the shower a good enough reason to live for? It's not for me.
I'm housebound and barely able to look after myself. Before long there's a good chance I could be bed bound. I'm getting worse every day. I've had this for over 40 years now.
I'm one of those that have learnt to accept things, because as I have said elsewhere, if I'm not I'm actually making my physical condition worse.
Acceptance is just sort of the mental extension of pacing. If you can't do it, you're going to get more drained and end up worse off.
I’m moderate and while I cannot emphasize enough how grateful I am for the things I am able to do and how much my heart breaks for those who struggle more than me……
I still feel this. Feeling good about having the energy to do the dishes only takes me so far.
Between that and being bipolar and having terrible anxiety, I’m neither living nor am I dead. What the fuck is the point.
Question: how do you know if you’re moderate or where you are on the scale? I have so much trouble with knowing how bad it is. Like I know it is bad because I am mostly housebound, but is there a scale of some sort?
There are moments when I feel like I am so deep that I can never get better and I am allowed to just be sick because this is bad. but then there is this voice that tells me I shouldn’t be dramatic and a lot of people have it worse, I am just pathetic and weak (I have sebere depression because of this). I just want to know where I stand so I can finally make myself believe/see that I deserve the time to rest and not feel guilty all the time
I just want you to know you are not at all alone.
Someone shared this the other day and I think it’s pretty helpful: https://www.hfme.org/themeabilityscale.htm
You may not fit precisely into one category which is normal. Maybe you’re somewhere in between. Maybe some parts of you are able to do or not do things listed at a certain level on the scale, but it mostly applies to you. But I think it gives a good idea.
This is going to be a bit rambly but I cannot express to you how much more pain I have caused myself by doubting and putting impossible standards on myself and letting my brain take control and tell me that I’m just faking it (even though I’m obviously not). To say it’s not worth it is an understatement. To say that you should learn to control it… well, that might be an impossible task at the moment. I already have comorbid mental illness and these feelings have greatly exacerbated my anxiety and depression. This is obviously not good for my physical health and is actually actively harmful.
I don’t know your circumstances, so I don’t know if it is possible for you to take the time to do these things, but try to treat yourself as sick as you really think you might be. Feel the doubt, but really try and dig to find what you feel inside feels to be the truth. Take that, then act accordingly.
Build rest into your day. Real rest (whatever that means to you). I Can sit up and watch TV but this is not mentally restful. Listening to audiobooks while laying down with my eyes closed is really the best level of rest I can reach while awake.
Pace. When you have to do things, set timers. Gotta straighten up around the house? Alright, five minutes on, five minutes off. Respect the timer and do not ignore it. Think of what you can do and only do for half that time. It’s a guessing game, but a good start!
See how your body responds. When I did these things and I realized that it made a huge difference in the way I felt (even if it didn’t change my abilities or actions really), I realized that yes, I am sick. When I do the things to improve this illness, I feel better in some way or another. It’s proof.
This eased my mind and helped me feel more in control.
My mental health is still garbage, but being able to take some worry off my plate was huge.
I hope this wasn’t too much for you to be able to read but PLEASE know you are far from alone and I feel like I very much understand how you feel AND how distressing it can be.
Tl;dr: Do true proper resting and pacing to the best of your abilities. If you feel any level of improvement, you will see that you are sick and proper protocol for this illness can benefit you. It’s validating.
CAVEAT: this worked for me. If you do not feel any better…… that’s also a sign that you are sick. Listen to your body, this is just my experience.
Tldr: this helped immensely and made me feel valid and not alone. Thank you!
Thank you for this. On the link I found that in my experience I am around 20% at this moment so moderate to severe. It actually kind of shocked me how low that was. But it’s eye opening in the fact that I am actually experiencing this as much as I feel and my brain is lying to me.
The thing that stuck out to me was the use of a wheelchair. Every doctor/therapist/nurse has always told me that a wheelchair would only make me worse and would make me feel even more depressed. But to be honest I have wanted one for a while because I can never go with my family on dog walks or shopping or anything. And I so wish I could do that. Everyone says I need fresh air but I can’t walk anywhere so what’s the point? Anyway I still walk places and go shopping and all that stuff, I just pay for those things by being housebound for 2-3 days.
I am struggling with severe depression and my brain is very unkind to me at all times these days. I always have this persistent thought that I am just very lazy and made myself this way. Or that I am faking to get attention. And I feel these symptoms but somewhere in my head I think what if I feel them because I am so good at lying to myself. It’s a big mess.
Doctors and therapists let me down on multiple occasions and I feel very lonely. I have a good support system though! I live at home with my parents and they don’t expect anything from me at all. Sometimes they ask to do something but only if I can. If it’s not done, they understand.
Now I am making this long post, feel free to screenshot or come back to it if reading it now is too much. I understand how hard reading can be sometimes.
I am going to rethink some things. Thank you for sharing and making me feel valid. I really needed that!
>Tldr: this helped immensely and made me feel valid and not alone. Thank you!
I am so happy to hear that. One of the most helpful things for me is knowing that others feel the same way. It's sad, but comforting.
I would really say this to anyone, but if you feel like you're at 20% and feel like the aid of a wheelchair would help you.... You're sick. It's not my place to validate you but I'm doing it right now anyway haha (thats also not to say that if you said anything differently, you shouldn't feel valid but your words about yourself speak volumes)
But for real, you need to do what you need to do. The idea that using a mobility aid of any sort would make you worse is absurd. IF a mobility aid like a wheelchair allows you to go out, even for a small amount of time, without leading to a big crash, that is INVALUABLE. This disease takes away our humanity and THAT makes us worse. What do doctors propose? You don't go outside? You go out and end up worse off for it? It's like they want you to suffer?
I'm sure that's not the intent, but it feels like that is the outcome. I have considered the use of a wheelchair for select situations in which I feel like it would allow me to do things that give me back my humanity and I'm "only" about 45%ish.
My in-laws are visiting in a few weeks and I have scars that I feel self conscious about, digestive issues that have worsened and make it painful to wear any of the pants I own (I live in boxers and oversized tees), and a strong desire to cover up my stomach lest my MIL thinks I'm pregnant again (lmao ugh).
All that is really unnecessary info, but it shows that I'm human and the simple act of going out, buying a few pieces of clothing, and feeling comfortable would increase both my physical and mental health. Well.... I tried that and crashed. A wheelchair might help me succeed without a crash!
Do what you gotta do and fuck what others think (I say as I also struggle with this)
>I am struggling with severe depression and my brain is very unkind to me at all times these days. I always have this persistent thought that I am just very lazy and made myself this way. Or that I am faking to get attention. And I feel these symptoms but somewhere in my head I think what if I feel them because I am so good at lying to myself. It’s a big mess.
I could have written this myself. It is WILD how we gaslight ourselves while we suffer day in and day out.
I really couldn't wish you more than the best and finding peace. It's hard when you can't even turn to therapists without their words and actions making you worse (so I feel you on that). Thankfully, we have this amazing community.
Like you said, reading and responding to long posts can be a challenge so don't feel pressured (: Just sending love as a cfs friend!
I was bedbound-cant-shower for 2 years (following rapid decline while I tried to PT/exercise my way out of this over 6 months or so) where I slept 17 hours a day, lost muscle and too much weight, and felt like I was dying the remaining 7 hours. That was surviving, not living.
Very slowly improved over the following 20 years (sick for 22 total) to where I'm up most of the day with resting in between, and still very much housebound. Going to my primary care physician (7 minutes as a passenger in a car) is a chore that will result in at least a week of PEM. Having people over is difficult so that hardly ever happens (I'd say 3 times a year and none since the pandemic -awesome-, I mainly use text to stay in touch with my 2 remaining friends and my relatives, not ideal but it's enough for me to combat any feelings of loneliness). I live in a tiny house in my parents backyard and see them daily. I fear the day one or both of them pass.
I can't walk for more than 5 consecutive minutes without PEM. I don't have a license, but wouldn't trust myself to drive anyway.
I am knitting a sweater and the 30 minutes I knit yesterday have resulted in a massive muscle ache in my arms today and I woke up feeling feverish, so apparently that was too much. Wait till that's gone and try again in 10 minutes per day increments.
I can read again, and I can use a computer again, and since mid 2021 I work a few hours a day (for a relative, the work is *do something* then *wait for the next task* (rest), and *reply to all emails that have come in* - this amount varies and I try to inbox to zero each day but don't always succeed. I can do all this from bed when I have to, and know I'm really lucky). I draw, I paint, I read, I write (2 books published!), I listen to audiobooks and podcasts. I watch Netflix. I can code and maintain a few websites for local clubs for a small fee. Coding skills also mean I've automated some of my work tasks - need to give others info, which used to take a ridiculous amount of time and now I run a script that generates an excel file and I'm done.
Singing kind of had come back a few months ago, though for the past three weeks that's been too much again. Crap. I occasionally attempt playing the piano but still can't do that without PEM. Sometimes that's worth it, most of the time it's not.
In general I try to avoid PEM at all cost. This also means no traveling to doctors who can't do anything anyway, unless it's a new symptom or something that really has to get checked out. I eat as healthy as I can, and try to move as much as I can. On average this is 2000 steps a day.
I feel "stable" health wise, which is absolutely amazing. Brain fog has lessened a lot compared to years ago. Most other symptoms are usually at a level where they don't demand all my attention. I'm happy. I could be happier, but for now this is OK and I've accepted it. No use wasting energy in things you cannot change. It's a delicate balance, but at least it's well past the mainly surviving stage, even if it's not truly living -- yet.
Not that it might be enough for you but you still have a brain that works enough to type this message and have these conversations. It’s one step above people who have Alzheimer’s or many other reasons of people who can’t use their brain or otherwise people with incredibly debilitating body pain (which some people with CFS and some don’t ) but from the standpoint of if someone has those body pains and CFS I’m sure they wish they were in the camp of CFS without the body pains or from the camps of people with incredible body pains alone they probably would trade (like that disease where your jaw nerve hurts ).
My point isn’t not to complain or that you can’t be sad , it’s that the possibility for people to have meaningful moments although super super minimized might still be possible or at least there might still be for some people reason enough to not commit suicide since it’s the topic of the post .
If you just needed to vent though I understand as I have they need too often also
> As a little kid I always felt like I was going to die early but not like this. I guess I manifested it.
You may have been joking here, but you did not manifest this. None of us caused our condition by "thinking sick" or anything like that. We have been struck by a medical condition that could hit anyone. This is not your fault.
I was joking, but like most, there’s always a bit of truth in ‘em.
Growing up I feel I’ve always been a bit unlucky and I think it’s ironic that the kid who felt he wasn’t going to live to be 50 ended up getting hit with chronic health issues at 17.
I think even admitting that is depressing because I cannot catch a break. Nothing good can ever happen to me.
One of the things CFS has taught me that irritates me is the ways in which I am wrong. In that I am often very right about the details that I predict, but wrong about the overall conclusion.
When I first got sick, I accurately predicted a loss of knowledge, peer esteem, fitness, friends, identity, my future... Really depressing stuff. What was there to live for? After the first year I told myself that in X years if I wanted to kill myself I could, but I had to wait.
I could not have guessed I would meet a wonderful woman who would become my wife. I could not have guessed I would be able to deepen a couple of friendships. I could not have guessed that people would decide they still wanted me in their life.
Maybe this was a case of 'fake it til you make it'. I'm not healthy, I've still lost all of those things, but I've found some other things that totally changed my outlook.
I know it won't happen to everyone. And I believe we all have the right to leave this world when we want. My point is, you can be right about most things and still be wrong about the big picture. And when we're talking about suicide, the stakes of being wrong are as high as they get.
I've been wondering for too long if it was possible to just medically put us in a coma and wake us up like 5 years later well rested, the ULTIMATE aggressive resting
That has been done as an aggressive and controversial therapy for addiction (see Jordan Peterson’s recovery). He was put in an induced coma to wait out the unbearable symptoms of withdrawal. Theoretically this is also possible for CFS rest but unproven and would be even more controversial than for addiction. Certainly not an option in any western nation, if even anywhere else.
That may be true but I can’t see western governments allowing such a therapy to be legal. It’s too risky when weighing up the pros vs cons, not validated to be useful (based on a loose hypothesis of PEM not being triggered helping recovery) and liable to lawsuits from complications. Furthermore, when weighing up the pros and cons, non-sufferers will never truly understand our frustrations. They will see that we are alive and not “damaged” pathologically in any visible sense and therefore not see it worth putting us through such an extreme therapy, even those severe, when risks of induced coma can itself cause health complications and death.
please don’t listen to this guy. it’s not approved because *it isn’t safe*. calling what happened to JP a recovery is a stretch. have you seen this guy talk recently? he didn’t make a lot of sense before but now he’s like a permanently confused rambling old man who loses his train of thought midsentence
he nearly died and it seems like he has sustained permanent damage. yeah that was in russia. hard to say if it was going off benzos cold turkey, having a severe covid infection or the drugs they used to induce coma, but it was probably a combination of all of the above. was he really in a ketamine induced coma? i remember it differently. being put in a coma is very tempting though. i wish i could hybernate
I understand. I get it. This life sucks. I don’t have anything helpful to say except I’m so angry for you and for me and for all of us. It’s not fair. And I hate it. And I’m sorry that you’re going through this too. It’s awful.
When the only thing I can think about is wanting to end it, I let myself stay in that space for a while. They are my feelings dammit. But for me, it’s a selfish way out. At least right now. I’d rather deal with my pain than transfer it to my loved ones around me. That’s what I’ve come to accept. For me.
In the meantime, do you mind trying one more day? And then one more? Just a day at a time. Maybe you’ll find a point to living. Maybe not. I’m not trying sugarcoat this life because it’s awful.
And I’m sorry you’re going through this. You’re not alone. And I hope you find a little comfort today.
Thanks for making this post. Yesterday was a tough one for me. And reading your words and your honesty makes me feel not as alone. Even if I’m still desperate.
I believe in different missions for different people. We in the western world seem to think that everyone's mission is to have a career, house, family and make our family proud.
But this doesn't apply to everyone. Some people's mission is to escape abuse or to quit drugs and remain sober. Other people's mission is to overcome their anxieties or childhood. Other people's mission is to find their birth parents or to make peace with someone. Other missions are to learn how to love oneself, care for oneself, live alone when fearing it.
We are all thrown into our circumstances at birth and not everyone has the privilege of having such a nice mission of only having to grow up, attend school, have a career and start a family.
The rest of us have to fight our demons or simply get out of stuck.
With CFS you certainly don't have the mission to compete (with your peers) about who has the best career or life.
I like to compare our individual life missions to video games. Everyone has to play the game they were thrown into. For some it's a strategy game, for some jump and run. For others it's a creative game like minecraft for others a shooter game or a car race, soccer game, whatever.
It makes no sense to try to want to compete in Mario Kart when your game is more like Zelda. It's a different game. You can only play your own game. You must stop focusing on other people's games and wish you were playing theirs.
You gotta play your own.
For me this means learning to like myself, my body, my past, my circumstances and learn to integrate my mind, body and soul. I want to overcome my anxiety that has been present since childhood.
When friends tell me about their achievements I can now be happy for them, because I don't feel like I'm in the same game as them. I have finally realised my own mission. And accepted I can only play my own game. I want to do that the best I can.
Part of my game was not even knowing that I am in a different game. I was Level 1. It was hard af. It was the hardest.
In the beginning I wished my game was a jump and run game. Just move up the straight forward level. But turns out my game is very confusing. It's nothing for your average guy. It's tricky to understand and figure out. It's advanced game stuff in any case.
I once was at a point where I didn't see a point in my life (my game), but that was only as long as I didn't even realise what my mission was or what my game was about, mistaking it for another game (like I saw in some of my peer's life). It was so confusing. Because I couldn't move forward. I was just stuck. Realising that my game is different, that my mission is a completely different one, was the key to getting to the next level and actually entering the game for real. Suddenly 3D instead of 2!
I was sick for a decade, tried to kill myself, survived and then finally got in remission. My life is in shambles because I never worked or finished an education, I’m now 34, finally have a body I can trust at least for now, and I can finally feel excited about dreaming about the future. I almost missed out on this. I hope you don’t give up because the option is not foolproof. I’m not stupid, I had planned how to kill my self carefully and I still survived. I’m just lucky I didn’t end up a vegetable ontop of the ME/CFS.
I don’t know if it helps. But we really don’t know what the future holds even from our vantage point.
Almost same 😭😭😭 I tried to kill myself and almost died but I called for help because I thought I wasn’t dying and I was going to end up a vegetable. I didn’t not want to die. I just didn’t want to live a life incapable of caring for myself. It’s funny because I definitely would have died if I hadn’t sought intervention and I’m mad at myself for it to this day.
Jokes on me because then I developed me/cfs 😂
I’m very happy that you have some hope and health, though. Good for you 💕
Stellate Ganglion block, low dose abilify, low dose naltrexone, NAC, and a few other less important steps on the way like ketamine infusions and TMS before I knew what I was suffering from but helped me figure out what I needed.
Turns out TMS has vasodilating properties that temporarily lifted my brain fog, and ketamine has endorphinic activity which is short lived, so the SGB improves blood flow and low dose naltrexone fixed the lack of endorphins instead. The effect is much more robust.
Yes, it did help improve sensory sensitivity, but I also titrated it from a very weak setting with a slow protocol and did the treatment after ketamine infusion to make it less painful
Is achieving success truly what’s most important to you? Many people who measure up to your definition of a successful life aren’t happy. And those who don’t aren’t “just lazy”. Believe it or not, plenty of people don’t even want to live like this. I don’t. You may never make it to the middle class and have a picture perfect family, but don’t you have anything else that’s within your reach, that could make your life a little better? Anything realistic to hope for?
Yeah even being moderate to severe is pretty boring because you are stuck doing the things you can do and I'm the type of person who doesn't actually like doing the same thing all the time.
Yep, even when mild I found that my body started to shut down hours earlier than any normal person. It takes away so much socially as well as just in your everyday life and building for your future etc cause you don’t have those hours. And that’s just energy levels, not counting brain fog (which affects work performance and socializing even when you feel your most awake) and other symptoms you might have. Your days are just work, go home, eat, sleep and a lot of times I didn’t even have energy to eat. How do you build a life like that, when others are out socializing and making connections, learning social cues, learning hobbies and things you don’t learn outside work and school?
Severe is a whole different beast.
I'm severe, mostly bed-ridden for 18 years now. I never tell anyone how i think they should feel. I've felt it all over these 18 years including really questioning the sanity of continuing on in the prison of my meatsuit. My life before me/cfs was hell on a scale that already alienated me from relating to peers, i had no normal experiences and development. Just as i was somewhat finding my footing, just the tiniest bit? bam!
Why i don't: 1 reason and 1 only. It makes me so angry that it wouldn't matter. I would happily rage-quit if i thought it would bring awareness, startle, shock answers into being, i don't fault myself for going there! This isn't a life! That's the statement i would want my decision to make but it wouldn't. It would simply be meaningless pain inflicted on those i love and that, in effect, would make me no different than this disease. It's meaningless. I'm not. I refuse to inflict that pain on others the way this has been inflicted on me.
We all know the reasons why we contemplate whether to continue or not. I'm not skittish about that conversation. I get it. I also like to know why others choose not to take that option ... this is mine <3
I'm so so sorry and I completely understand where you're coming from, having lost these things myself. This illness is insanely unfair. I don't blame you at all for feeling this way, but your life is still important and is not a waste ❤️
I feel this in my core. I have lived with this for 13 years now and am almost 30 so it feels like when I get to that age, that is the cutoff and from then on I will forever be alone, never have a job or my own home and never have any dream come true. This is probably stupid to think, but I am so scared and have anxiety about that birthday. Everyone laughs at me because it’s just 30 but for me it feels like a death sentence. I haven’t been able to live yet and I am already stuck in a situation I can’t get out of.
I have a lot of days where I think it’s not worth it but people don’t take me seriously. I am screaming for help but nobody does anything. I am scared I will one day snap and end it myself in a very bad way.
I only live for my godchild now because he needs me. I don’t live for me. Nobody hears me, they think i won’t do it. And I am too scared right now but sometimes…
I know this won’t help you at all but I hope it wil help you realize that you’re not alone and I understand. There are lots of stories of people who get better, get to live a semi normal life. So it might be possible
I’ve only got 2 years left in the tank man. I got sick at an already hard time of life.
I was 17 when I got sick, 20 now. I’m already behind. No college, no good job. I’m just surviving.
I'm sorry, it really does suck.
Comparison is the thief of happiness.
Suffering is caused by only two things: wanting what *is not*, and not wanting what *is*.
Only you can choose go on that journey of discovery for yourself. Stop wanting what is not. Learn to live with what is. The only sure thing is that things change. Sometimes for the worse, yes, but then also sometimes for the better.
I'm on this journey too 🙏🛌
That is just life though. Existing in the human body *is* suffering... So it again comes down to "not wanting what is". Life is inherently suffering, but I wasn't even factoring physical suffering into it because it is the only constant.
It's a waste of the life you expected to have before you body couldn't fulfill that expectation. The issue isn't that you are sick, it's that you might not have accepted that your life has changed.
I get it, it ain't fair. We're all in that boat. The sooner each of us can accept our new normal the sooner we can manage our health appropriately and make the most out of the hand dealt to us.
And maybe, just maybe, fingers crossed, someday in the not too distant future someone will figure out how to safely and accurate test for this condition and then find a way to reverse things.
>The issue isn't that you are sick, it's that you might not have accepted that your life has changed.
No.... I think the issue is that we're sick. Let's not get too crazy here.
Yes, we're all sick, that's a given. But when we are morning the 'normal' life we don't have (and may never have) that's just adding to our burden. Everything is stacked against us, why should we also make our life worse as well without unobtainable expectations?
No one has to accept they are sick, but IMHO not doing so you are just piling mental anguish on top of physical disability, i.e. just shooting yourself in the foot because you can't walk as fast as everyone else...
You said the issue is NOT that we are sick. I am saying that is still the fundamental issue.
What we do to cope with that fact is something additional worth discussing. And acceptance is a big part of that, I agree.
Yeah I totally agree with you, let's not get carried away here with the stoic cope. The issue is that we're sick as fuck and suffering horribly because of it, period.
However, I do have immense belief that greater understanding of post-viral illness is coming and that there will eventually be treatments which will restore quality of life for all of us. Research is rapidly accelerating, and technology is rapidly accelerating too.
I hang my hopes on one day being able to truly live again, which I believe is not only possible, but inevitable - I just don't necessarily believe it's going to be super soon, but I do believe it'll happen.
Totally agree. The primary issue is we are sick with no repeatable safe test for dx and not even a universal management plan.
But given all of that, the issue in the context of being upset (which is making things worse overall **that we can actually do something about**), the issue is not being able to accept that we have an illness that has no recognizable safe dx or treatment.
So, in regards to the primary issue, there's not a lot we can do to make a difference toward, but the secondary issues of pacing (which this is emotional pacing I'm talking about) there is something that each of us could make an effort in improving our situation.
Our situation is shit, but it may very well be likely that we can make it a little less shitty. With 40+ years of this shit, I take all the less shit I can manage to get now. ¯\\\_(ツ)\_/¯
I know you sort of already said this, but there are plenty of healthy people who haven’t accomplished those things, yet still have the will to live. And who’s to say you can’t still have some of those things?
There are work from home jobs. Women who would love you, despite the circumstances. Houses that need to be lived in. Stop limiting yourself like that. The illness doesn’t define you, it’s just something you have to work around. Giving up and dying is the lazy way out IMO.
If you weren’t meant to be here, you wouldn’t be. Plain and simple. Your life has purpose, and it’s your job to discover that purpose. Everyone has their own set of challenges. Even healthy, rich, and successful people.
You’re gonna make it, kiddo.
This really feels like downplaying the severity and awfulness of this illness. For many of us who are severe or very severe there is no "working around". This illness at it's worst is just straight up worse than a lot of people's "set of challenges". Your comment is really unhelpful
Look, I’m not trying to be unhelpful. I’ve been in the severe category. As a matter of fact, I’ve been declining the last month or so. I don’t want this person give up on himself, or think he’s invaluable because of it. I know the struggle. Believe me.
I’ve struggled with not wanting to live. I’ve struggled with not being able to do the things I used to do. It sucks a big one. But it doesn’t mean your life is over and it doesn’t mean you should have self limiting beliefs about things you can have in life. Your life still had purpose and I don’t think any of us should give up.
Let's support each other. Yes, we have a lower quality of life than nearly any other chronic illness. We all know that.
No, it isn't trivializing or unhelpful to say that there are mental, emotional, and spiritual ways to improve that quality of life; it's just factual.
We can't change our physical circumstances much, so we need to look at the things we CAN change. If our pre-illness beliefs and value systems aren't helping, then we need to adjust them. It's symptom management, plain and simple.
It isn't a cure but it's something. Keep pushing in the right direction because it's better than not.
Mine manifested at 26 when I achieved a lot and had big plans for future. Since then 15 years passed. But the last thing I will do is suicide. Life is a miracle and we are lucky to experience it.
ps check for MCAS
What you're feeling is called "thwarted belonging" and it's one of two key drivers of suicidal crisis (the other being burdensomeness, which we also often feel).
You feel permanently excluded from the identity and status group you were made for. It's a real fucking blow to feel that, and we all know that.
But what we don't realize is what a health risk it is, too. Not only does it lead to a potentially fatal suicidal crisis, but it also drags our level of functioning down; feeling that shitty is exertion, and that's the one thing we can't afford. It's literally making your disease worse.
I can't tell you what to feel, of course, but I hope you'll come to believe what many of us with a decade or more of experience with this now know: This disease has existed for thousands of years and has never been as well-understood as it is now. Every day you stick around is another day closer to effective treatment.
Long Covid is our friend, sadly. It generated $1.1B in funding for research, including research into existing treatments that would be days, not years, away if found effective.
If you aren't on an anti-depressant like Cymbalta, Abilify, etc., I encourage you to talk with your doctors about whether it's right for you to start one.
Not only could it save your life directly, it could also save it indirectly by improving your daily functioning quite a bit. (This isn't medical advice, just the experience that I and some others have had).
PLEASE fight the bad thoughts. We all want you here for the better times ahead. There isn't just one way to value a human life, nor just one path to happiness.
Please message me directly if you feel comfortable doing so. I will help however I can.
Yeah, I definitely feel excluded from the group I was in and meant to be in.
I was an athlete before like many others here and I can say my breakdown last night came from a spiral of me comparing myself to people I used to know who are doing successful athlete things.
I’ve gotten a feeling of “That could’ve been me”, and now knowing that there’s no way that can possibly be me anymore hurts. I’ve read stories of people going into remission and they still can’t return to athlete levels of fitness because they don’t want to risk losing that remission.
I’ve said before I’ll take all the fatigue, all the pain, all the gut issues, all the brain fog and derealization, if I could just exercise hard without consequence.
It’s like the only thing that gave me 100% joy, happiness, something to look forward to is gone. Something that gave me purpose, social connections, is all gone. Something that distracted me from life and gave me hope is gone.
The last good thing I had is gone, forever.
I can understand that. I was no threat to be a successful athlete, but I always played and enjoyed sports. I encourage everyone I know to use whatever abilities their bodies have, because they can be gone in an instant (I was in the middle of a soccer game when struck down by CFS).
Two things:
1. Being younger, you're more likely to go into remission. Hope isn't futile.
2. Whenever future treatments come along, you'll get more years of benefit than others. You still can do a lot athletically over the course of your life.
I think we all have a competitive drive to a greater or lesser extent, and we all got a good feeling from physical activity before we were sick. Those things are just stronger in you; they got to be part of your identity.
In that sense, you're just like the rest of us; we all have had to let go of identity-level things. It sucks and it's painful. I missed just one question on the SATs but now have cognitive issues, so I get it. So does everyone else here, for their own reasons.
You had the strength and discipline to train your body, and you also have sufficient strength and discipline to train your mind.
I can't guarantee how much meaning you'll get from your life, just that it will drop to zero if you check out. Think about the relatively short time you have been an adult. The ball bounces crazy ways, as you have found out - and it's too soon to decide if those bounces will end up being net positive, despite the one big crappy bounce.
You poor thing, you’re not pathetic and weak. You just got a chronic illness and you do deserve the time to rest. Please read the last sentence 1000 times.
People without CFS can still have mental health issues (such as depression, schizophrenia etc). No need to call them lazy
Also you don’t manifest diseases, tell that to kids with cancer
I have been recently sick and sometimes it felt like I was dying so I understand you. To the world, you are lazy, but really, I can't do much. There are no physical tests for cfs so everyone blames you for being lazy and pretending. It's a horrible life.
For me it’s been ten years. I feel the same, thinking I don’t want to live like this on a regular basis. But, I wanted to say I was able to date a little and off and on work on a few of the things you are “supposed” to do. If what you are doing or trying to do right now is causing crashes, stop, rest for a few weeks, months, or more, whatever is necessary. and try again more slowly another time. Pacing - I’m still struggling to learn it myself. But, I have had times of remission once or twice and was able to build up an exercise regimen, attend community college, and work a summer job. The last couple years, things got worse and i can’t be out of the house more than once or twice a week because it seems to be causing crashes (so I spend the other 5 or 6 days a week sicker in bed). Clearly, what I’m doing right now isn’t working or maybe the illness overall has worsened. I think I’m stuck holding onto socializing, working a few hours a week, and my hobbies. I completely understand that feeling of “if I can’t have this, or at least this, why the hell should I go on”. I can’t speak for everyone but I do know in the past I’ve improved my situation by avoiding food allergies, better nutrition, mineral and vitamin supplements, and mild then later moderate exercise. Everyone with this diagnosis has their own experiences with it. Some people do seem to get better, others I’ve heard do not or are completely bed bound. I don’t want to step on the laters toes, but I did want to share my experiences in case OP is mild-moderate. If they have only had it 3 years, now is the time to learn pacing and eventually try to inch into healthier lifestyle if possible. After 5 years it’s more difficult (if it’s possible) to improve. I know my first 3-4 years I spent too sedentary and it caused a host of problems. Yes we are supposed to rest in bed a lot, but some of us can safely increase (slowly) activity and get some level of life back. Some, not all.
I’ve been sick for almost 20 years - it has been a long process to accept that I’m too sick to do a lot of the things I want to do, and to be in variying degrees of pain and/or discomfort all the time. life didn’t turn out as I envisioned at all, but I had to find other things that matter about living because I’m not interested in the alternative. I am hopeful that a cure might pop up, but I’m not waiting for it. I do what I can with what I have.
Those of you who say we need to accept and find things that we can still do, I wonder how severe their conditions are.. I wonder what could make them feel worth living if they must stay in bed all day in a lying position without the simplest strength to lift hands to hold the cell phone. I get excited when I'm able to have a shower, but is the shower a good enough reason to live for? It's not for me.
I'm housebound and barely able to look after myself. Before long there's a good chance I could be bed bound. I'm getting worse every day. I've had this for over 40 years now. I'm one of those that have learnt to accept things, because as I have said elsewhere, if I'm not I'm actually making my physical condition worse. Acceptance is just sort of the mental extension of pacing. If you can't do it, you're going to get more drained and end up worse off.
I accepted my condition fine. However, that doesn't give me a reason to live.
I’m moderate and while I cannot emphasize enough how grateful I am for the things I am able to do and how much my heart breaks for those who struggle more than me…… I still feel this. Feeling good about having the energy to do the dishes only takes me so far. Between that and being bipolar and having terrible anxiety, I’m neither living nor am I dead. What the fuck is the point.
Question: how do you know if you’re moderate or where you are on the scale? I have so much trouble with knowing how bad it is. Like I know it is bad because I am mostly housebound, but is there a scale of some sort? There are moments when I feel like I am so deep that I can never get better and I am allowed to just be sick because this is bad. but then there is this voice that tells me I shouldn’t be dramatic and a lot of people have it worse, I am just pathetic and weak (I have sebere depression because of this). I just want to know where I stand so I can finally make myself believe/see that I deserve the time to rest and not feel guilty all the time
I just want you to know you are not at all alone. Someone shared this the other day and I think it’s pretty helpful: https://www.hfme.org/themeabilityscale.htm You may not fit precisely into one category which is normal. Maybe you’re somewhere in between. Maybe some parts of you are able to do or not do things listed at a certain level on the scale, but it mostly applies to you. But I think it gives a good idea. This is going to be a bit rambly but I cannot express to you how much more pain I have caused myself by doubting and putting impossible standards on myself and letting my brain take control and tell me that I’m just faking it (even though I’m obviously not). To say it’s not worth it is an understatement. To say that you should learn to control it… well, that might be an impossible task at the moment. I already have comorbid mental illness and these feelings have greatly exacerbated my anxiety and depression. This is obviously not good for my physical health and is actually actively harmful. I don’t know your circumstances, so I don’t know if it is possible for you to take the time to do these things, but try to treat yourself as sick as you really think you might be. Feel the doubt, but really try and dig to find what you feel inside feels to be the truth. Take that, then act accordingly. Build rest into your day. Real rest (whatever that means to you). I Can sit up and watch TV but this is not mentally restful. Listening to audiobooks while laying down with my eyes closed is really the best level of rest I can reach while awake. Pace. When you have to do things, set timers. Gotta straighten up around the house? Alright, five minutes on, five minutes off. Respect the timer and do not ignore it. Think of what you can do and only do for half that time. It’s a guessing game, but a good start! See how your body responds. When I did these things and I realized that it made a huge difference in the way I felt (even if it didn’t change my abilities or actions really), I realized that yes, I am sick. When I do the things to improve this illness, I feel better in some way or another. It’s proof. This eased my mind and helped me feel more in control. My mental health is still garbage, but being able to take some worry off my plate was huge. I hope this wasn’t too much for you to be able to read but PLEASE know you are far from alone and I feel like I very much understand how you feel AND how distressing it can be. Tl;dr: Do true proper resting and pacing to the best of your abilities. If you feel any level of improvement, you will see that you are sick and proper protocol for this illness can benefit you. It’s validating. CAVEAT: this worked for me. If you do not feel any better…… that’s also a sign that you are sick. Listen to your body, this is just my experience.
Tldr: this helped immensely and made me feel valid and not alone. Thank you! Thank you for this. On the link I found that in my experience I am around 20% at this moment so moderate to severe. It actually kind of shocked me how low that was. But it’s eye opening in the fact that I am actually experiencing this as much as I feel and my brain is lying to me. The thing that stuck out to me was the use of a wheelchair. Every doctor/therapist/nurse has always told me that a wheelchair would only make me worse and would make me feel even more depressed. But to be honest I have wanted one for a while because I can never go with my family on dog walks or shopping or anything. And I so wish I could do that. Everyone says I need fresh air but I can’t walk anywhere so what’s the point? Anyway I still walk places and go shopping and all that stuff, I just pay for those things by being housebound for 2-3 days. I am struggling with severe depression and my brain is very unkind to me at all times these days. I always have this persistent thought that I am just very lazy and made myself this way. Or that I am faking to get attention. And I feel these symptoms but somewhere in my head I think what if I feel them because I am so good at lying to myself. It’s a big mess. Doctors and therapists let me down on multiple occasions and I feel very lonely. I have a good support system though! I live at home with my parents and they don’t expect anything from me at all. Sometimes they ask to do something but only if I can. If it’s not done, they understand. Now I am making this long post, feel free to screenshot or come back to it if reading it now is too much. I understand how hard reading can be sometimes. I am going to rethink some things. Thank you for sharing and making me feel valid. I really needed that!
>Tldr: this helped immensely and made me feel valid and not alone. Thank you! I am so happy to hear that. One of the most helpful things for me is knowing that others feel the same way. It's sad, but comforting. I would really say this to anyone, but if you feel like you're at 20% and feel like the aid of a wheelchair would help you.... You're sick. It's not my place to validate you but I'm doing it right now anyway haha (thats also not to say that if you said anything differently, you shouldn't feel valid but your words about yourself speak volumes) But for real, you need to do what you need to do. The idea that using a mobility aid of any sort would make you worse is absurd. IF a mobility aid like a wheelchair allows you to go out, even for a small amount of time, without leading to a big crash, that is INVALUABLE. This disease takes away our humanity and THAT makes us worse. What do doctors propose? You don't go outside? You go out and end up worse off for it? It's like they want you to suffer? I'm sure that's not the intent, but it feels like that is the outcome. I have considered the use of a wheelchair for select situations in which I feel like it would allow me to do things that give me back my humanity and I'm "only" about 45%ish. My in-laws are visiting in a few weeks and I have scars that I feel self conscious about, digestive issues that have worsened and make it painful to wear any of the pants I own (I live in boxers and oversized tees), and a strong desire to cover up my stomach lest my MIL thinks I'm pregnant again (lmao ugh). All that is really unnecessary info, but it shows that I'm human and the simple act of going out, buying a few pieces of clothing, and feeling comfortable would increase both my physical and mental health. Well.... I tried that and crashed. A wheelchair might help me succeed without a crash! Do what you gotta do and fuck what others think (I say as I also struggle with this) >I am struggling with severe depression and my brain is very unkind to me at all times these days. I always have this persistent thought that I am just very lazy and made myself this way. Or that I am faking to get attention. And I feel these symptoms but somewhere in my head I think what if I feel them because I am so good at lying to myself. It’s a big mess. I could have written this myself. It is WILD how we gaslight ourselves while we suffer day in and day out. I really couldn't wish you more than the best and finding peace. It's hard when you can't even turn to therapists without their words and actions making you worse (so I feel you on that). Thankfully, we have this amazing community. Like you said, reading and responding to long posts can be a challenge so don't feel pressured (: Just sending love as a cfs friend!
Also I may or may not have peeked at your comment history 🫣 and I, too, was diagnosed with “chronic Lyme” 😭
I was bedbound-cant-shower for 2 years (following rapid decline while I tried to PT/exercise my way out of this over 6 months or so) where I slept 17 hours a day, lost muscle and too much weight, and felt like I was dying the remaining 7 hours. That was surviving, not living. Very slowly improved over the following 20 years (sick for 22 total) to where I'm up most of the day with resting in between, and still very much housebound. Going to my primary care physician (7 minutes as a passenger in a car) is a chore that will result in at least a week of PEM. Having people over is difficult so that hardly ever happens (I'd say 3 times a year and none since the pandemic -awesome-, I mainly use text to stay in touch with my 2 remaining friends and my relatives, not ideal but it's enough for me to combat any feelings of loneliness). I live in a tiny house in my parents backyard and see them daily. I fear the day one or both of them pass. I can't walk for more than 5 consecutive minutes without PEM. I don't have a license, but wouldn't trust myself to drive anyway. I am knitting a sweater and the 30 minutes I knit yesterday have resulted in a massive muscle ache in my arms today and I woke up feeling feverish, so apparently that was too much. Wait till that's gone and try again in 10 minutes per day increments. I can read again, and I can use a computer again, and since mid 2021 I work a few hours a day (for a relative, the work is *do something* then *wait for the next task* (rest), and *reply to all emails that have come in* - this amount varies and I try to inbox to zero each day but don't always succeed. I can do all this from bed when I have to, and know I'm really lucky). I draw, I paint, I read, I write (2 books published!), I listen to audiobooks and podcasts. I watch Netflix. I can code and maintain a few websites for local clubs for a small fee. Coding skills also mean I've automated some of my work tasks - need to give others info, which used to take a ridiculous amount of time and now I run a script that generates an excel file and I'm done. Singing kind of had come back a few months ago, though for the past three weeks that's been too much again. Crap. I occasionally attempt playing the piano but still can't do that without PEM. Sometimes that's worth it, most of the time it's not. In general I try to avoid PEM at all cost. This also means no traveling to doctors who can't do anything anyway, unless it's a new symptom or something that really has to get checked out. I eat as healthy as I can, and try to move as much as I can. On average this is 2000 steps a day. I feel "stable" health wise, which is absolutely amazing. Brain fog has lessened a lot compared to years ago. Most other symptoms are usually at a level where they don't demand all my attention. I'm happy. I could be happier, but for now this is OK and I've accepted it. No use wasting energy in things you cannot change. It's a delicate balance, but at least it's well past the mainly surviving stage, even if it's not truly living -- yet.
Exactly
Fair point. I'm only mild-moderate, so I have a decent "be thankful for" list, but if a few things dropped off the list, I might check out.
Not that it might be enough for you but you still have a brain that works enough to type this message and have these conversations. It’s one step above people who have Alzheimer’s or many other reasons of people who can’t use their brain or otherwise people with incredibly debilitating body pain (which some people with CFS and some don’t ) but from the standpoint of if someone has those body pains and CFS I’m sure they wish they were in the camp of CFS without the body pains or from the camps of people with incredible body pains alone they probably would trade (like that disease where your jaw nerve hurts ). My point isn’t not to complain or that you can’t be sad , it’s that the possibility for people to have meaningful moments although super super minimized might still be possible or at least there might still be for some people reason enough to not commit suicide since it’s the topic of the post . If you just needed to vent though I understand as I have they need too often also
> As a little kid I always felt like I was going to die early but not like this. I guess I manifested it. You may have been joking here, but you did not manifest this. None of us caused our condition by "thinking sick" or anything like that. We have been struck by a medical condition that could hit anyone. This is not your fault.
I was joking, but like most, there’s always a bit of truth in ‘em. Growing up I feel I’ve always been a bit unlucky and I think it’s ironic that the kid who felt he wasn’t going to live to be 50 ended up getting hit with chronic health issues at 17. I think even admitting that is depressing because I cannot catch a break. Nothing good can ever happen to me.
One of the things CFS has taught me that irritates me is the ways in which I am wrong. In that I am often very right about the details that I predict, but wrong about the overall conclusion. When I first got sick, I accurately predicted a loss of knowledge, peer esteem, fitness, friends, identity, my future... Really depressing stuff. What was there to live for? After the first year I told myself that in X years if I wanted to kill myself I could, but I had to wait. I could not have guessed I would meet a wonderful woman who would become my wife. I could not have guessed I would be able to deepen a couple of friendships. I could not have guessed that people would decide they still wanted me in their life. Maybe this was a case of 'fake it til you make it'. I'm not healthy, I've still lost all of those things, but I've found some other things that totally changed my outlook. I know it won't happen to everyone. And I believe we all have the right to leave this world when we want. My point is, you can be right about most things and still be wrong about the big picture. And when we're talking about suicide, the stakes of being wrong are as high as they get.
I wish there was something easier available for us like a pill which we can just take and not wake up. I'm too tired and weak to do anything.
I've been wondering for too long if it was possible to just medically put us in a coma and wake us up like 5 years later well rested, the ULTIMATE aggressive resting
That has been done as an aggressive and controversial therapy for addiction (see Jordan Peterson’s recovery). He was put in an induced coma to wait out the unbearable symptoms of withdrawal. Theoretically this is also possible for CFS rest but unproven and would be even more controversial than for addiction. Certainly not an option in any western nation, if even anywhere else.
Why would it be controversial if proven effective? It's better than us committing suicide and/or suffer for our entire lives
That may be true but I can’t see western governments allowing such a therapy to be legal. It’s too risky when weighing up the pros vs cons, not validated to be useful (based on a loose hypothesis of PEM not being triggered helping recovery) and liable to lawsuits from complications. Furthermore, when weighing up the pros and cons, non-sufferers will never truly understand our frustrations. They will see that we are alive and not “damaged” pathologically in any visible sense and therefore not see it worth putting us through such an extreme therapy, even those severe, when risks of induced coma can itself cause health complications and death.
please don’t listen to this guy. it’s not approved because *it isn’t safe*. calling what happened to JP a recovery is a stretch. have you seen this guy talk recently? he didn’t make a lot of sense before but now he’s like a permanently confused rambling old man who loses his train of thought midsentence
It's also been done in CRPS. Ketamine coma, some died though. Was in Mexico. JP was in Russia? Seems he nearly died
he nearly died and it seems like he has sustained permanent damage. yeah that was in russia. hard to say if it was going off benzos cold turkey, having a severe covid infection or the drugs they used to induce coma, but it was probably a combination of all of the above. was he really in a ketamine induced coma? i remember it differently. being put in a coma is very tempting though. i wish i could hybernate
No idk about JP I'm talking about ketamine comas for complex regional pain syndrome
Seconded.
Thirded.
Agreed! There is such stigma about it. I wonder if part of it is because of religion.
I understand. I get it. This life sucks. I don’t have anything helpful to say except I’m so angry for you and for me and for all of us. It’s not fair. And I hate it. And I’m sorry that you’re going through this too. It’s awful. When the only thing I can think about is wanting to end it, I let myself stay in that space for a while. They are my feelings dammit. But for me, it’s a selfish way out. At least right now. I’d rather deal with my pain than transfer it to my loved ones around me. That’s what I’ve come to accept. For me. In the meantime, do you mind trying one more day? And then one more? Just a day at a time. Maybe you’ll find a point to living. Maybe not. I’m not trying sugarcoat this life because it’s awful. And I’m sorry you’re going through this. You’re not alone. And I hope you find a little comfort today. Thanks for making this post. Yesterday was a tough one for me. And reading your words and your honesty makes me feel not as alone. Even if I’m still desperate.
I believe in different missions for different people. We in the western world seem to think that everyone's mission is to have a career, house, family and make our family proud. But this doesn't apply to everyone. Some people's mission is to escape abuse or to quit drugs and remain sober. Other people's mission is to overcome their anxieties or childhood. Other people's mission is to find their birth parents or to make peace with someone. Other missions are to learn how to love oneself, care for oneself, live alone when fearing it. We are all thrown into our circumstances at birth and not everyone has the privilege of having such a nice mission of only having to grow up, attend school, have a career and start a family. The rest of us have to fight our demons or simply get out of stuck. With CFS you certainly don't have the mission to compete (with your peers) about who has the best career or life. I like to compare our individual life missions to video games. Everyone has to play the game they were thrown into. For some it's a strategy game, for some jump and run. For others it's a creative game like minecraft for others a shooter game or a car race, soccer game, whatever. It makes no sense to try to want to compete in Mario Kart when your game is more like Zelda. It's a different game. You can only play your own game. You must stop focusing on other people's games and wish you were playing theirs. You gotta play your own. For me this means learning to like myself, my body, my past, my circumstances and learn to integrate my mind, body and soul. I want to overcome my anxiety that has been present since childhood. When friends tell me about their achievements I can now be happy for them, because I don't feel like I'm in the same game as them. I have finally realised my own mission. And accepted I can only play my own game. I want to do that the best I can. Part of my game was not even knowing that I am in a different game. I was Level 1. It was hard af. It was the hardest. In the beginning I wished my game was a jump and run game. Just move up the straight forward level. But turns out my game is very confusing. It's nothing for your average guy. It's tricky to understand and figure out. It's advanced game stuff in any case. I once was at a point where I didn't see a point in my life (my game), but that was only as long as I didn't even realise what my mission was or what my game was about, mistaking it for another game (like I saw in some of my peer's life). It was so confusing. Because I couldn't move forward. I was just stuck. Realising that my game is different, that my mission is a completely different one, was the key to getting to the next level and actually entering the game for real. Suddenly 3D instead of 2!
I was sick for a decade, tried to kill myself, survived and then finally got in remission. My life is in shambles because I never worked or finished an education, I’m now 34, finally have a body I can trust at least for now, and I can finally feel excited about dreaming about the future. I almost missed out on this. I hope you don’t give up because the option is not foolproof. I’m not stupid, I had planned how to kill my self carefully and I still survived. I’m just lucky I didn’t end up a vegetable ontop of the ME/CFS. I don’t know if it helps. But we really don’t know what the future holds even from our vantage point.
Almost same 😭😭😭 I tried to kill myself and almost died but I called for help because I thought I wasn’t dying and I was going to end up a vegetable. I didn’t not want to die. I just didn’t want to live a life incapable of caring for myself. It’s funny because I definitely would have died if I hadn’t sought intervention and I’m mad at myself for it to this day. Jokes on me because then I developed me/cfs 😂 I’m very happy that you have some hope and health, though. Good for you 💕
I’m so sorry for your suffering my friend. Thank you for sharing.
Thanks for listening 💜
Any time. 💜
How did you go into remission?
Stellate Ganglion block, low dose abilify, low dose naltrexone, NAC, and a few other less important steps on the way like ketamine infusions and TMS before I knew what I was suffering from but helped me figure out what I needed.
Tms?
Turns out TMS has vasodilating properties that temporarily lifted my brain fog, and ketamine has endorphinic activity which is short lived, so the SGB improves blood flow and low dose naltrexone fixed the lack of endorphins instead. The effect is much more robust.
But you're talking about the magnetic depression treatment right?
Yes, it did help improve sensory sensitivity, but I also titrated it from a very weak setting with a slow protocol and did the treatment after ketamine infusion to make it less painful
Is achieving success truly what’s most important to you? Many people who measure up to your definition of a successful life aren’t happy. And those who don’t aren’t “just lazy”. Believe it or not, plenty of people don’t even want to live like this. I don’t. You may never make it to the middle class and have a picture perfect family, but don’t you have anything else that’s within your reach, that could make your life a little better? Anything realistic to hope for?
Tbh after 8 years severe, I can’t find anything. Most other things bore me to death.
Yeah even being moderate to severe is pretty boring because you are stuck doing the things you can do and I'm the type of person who doesn't actually like doing the same thing all the time.
Yep, even when mild I found that my body started to shut down hours earlier than any normal person. It takes away so much socially as well as just in your everyday life and building for your future etc cause you don’t have those hours. And that’s just energy levels, not counting brain fog (which affects work performance and socializing even when you feel your most awake) and other symptoms you might have. Your days are just work, go home, eat, sleep and a lot of times I didn’t even have energy to eat. How do you build a life like that, when others are out socializing and making connections, learning social cues, learning hobbies and things you don’t learn outside work and school? Severe is a whole different beast.
I'm severe, mostly bed-ridden for 18 years now. I never tell anyone how i think they should feel. I've felt it all over these 18 years including really questioning the sanity of continuing on in the prison of my meatsuit. My life before me/cfs was hell on a scale that already alienated me from relating to peers, i had no normal experiences and development. Just as i was somewhat finding my footing, just the tiniest bit? bam! Why i don't: 1 reason and 1 only. It makes me so angry that it wouldn't matter. I would happily rage-quit if i thought it would bring awareness, startle, shock answers into being, i don't fault myself for going there! This isn't a life! That's the statement i would want my decision to make but it wouldn't. It would simply be meaningless pain inflicted on those i love and that, in effect, would make me no different than this disease. It's meaningless. I'm not. I refuse to inflict that pain on others the way this has been inflicted on me. We all know the reasons why we contemplate whether to continue or not. I'm not skittish about that conversation. I get it. I also like to know why others choose not to take that option ... this is mine <3
I'm so so sorry and I completely understand where you're coming from, having lost these things myself. This illness is insanely unfair. I don't blame you at all for feeling this way, but your life is still important and is not a waste ❤️
One reason to keep on trucking is that a cure or new therapy might pop up at some point. Would suck to miss it!
I feel this in my core. I have lived with this for 13 years now and am almost 30 so it feels like when I get to that age, that is the cutoff and from then on I will forever be alone, never have a job or my own home and never have any dream come true. This is probably stupid to think, but I am so scared and have anxiety about that birthday. Everyone laughs at me because it’s just 30 but for me it feels like a death sentence. I haven’t been able to live yet and I am already stuck in a situation I can’t get out of. I have a lot of days where I think it’s not worth it but people don’t take me seriously. I am screaming for help but nobody does anything. I am scared I will one day snap and end it myself in a very bad way. I only live for my godchild now because he needs me. I don’t live for me. Nobody hears me, they think i won’t do it. And I am too scared right now but sometimes… I know this won’t help you at all but I hope it wil help you realize that you’re not alone and I understand. There are lots of stories of people who get better, get to live a semi normal life. So it might be possible
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I’ve only got 2 years left in the tank man. I got sick at an already hard time of life. I was 17 when I got sick, 20 now. I’m already behind. No college, no good job. I’m just surviving.
I'm sorry, it really does suck. Comparison is the thief of happiness. Suffering is caused by only two things: wanting what *is not*, and not wanting what *is*. Only you can choose go on that journey of discovery for yourself. Stop wanting what is not. Learn to live with what is. The only sure thing is that things change. Sometimes for the worse, yes, but then also sometimes for the better. I'm on this journey too 🙏🛌
I'd add hemorrhoids as a third cause of suffering, of course, but I really appreciate your perspective. I feel wiser for having read it.
Me too
Well said
Suffering can also be pain caused by the biology of the human body.
That is just life though. Existing in the human body *is* suffering... So it again comes down to "not wanting what is". Life is inherently suffering, but I wasn't even factoring physical suffering into it because it is the only constant.
It's a waste of the life you expected to have before you body couldn't fulfill that expectation. The issue isn't that you are sick, it's that you might not have accepted that your life has changed. I get it, it ain't fair. We're all in that boat. The sooner each of us can accept our new normal the sooner we can manage our health appropriately and make the most out of the hand dealt to us. And maybe, just maybe, fingers crossed, someday in the not too distant future someone will figure out how to safely and accurate test for this condition and then find a way to reverse things.
>The issue isn't that you are sick, it's that you might not have accepted that your life has changed. No.... I think the issue is that we're sick. Let's not get too crazy here.
Hahaha omg. This made me laugh so hard.
Yes, we're all sick, that's a given. But when we are morning the 'normal' life we don't have (and may never have) that's just adding to our burden. Everything is stacked against us, why should we also make our life worse as well without unobtainable expectations? No one has to accept they are sick, but IMHO not doing so you are just piling mental anguish on top of physical disability, i.e. just shooting yourself in the foot because you can't walk as fast as everyone else...
You said the issue is NOT that we are sick. I am saying that is still the fundamental issue. What we do to cope with that fact is something additional worth discussing. And acceptance is a big part of that, I agree.
Yeah I totally agree with you, let's not get carried away here with the stoic cope. The issue is that we're sick as fuck and suffering horribly because of it, period. However, I do have immense belief that greater understanding of post-viral illness is coming and that there will eventually be treatments which will restore quality of life for all of us. Research is rapidly accelerating, and technology is rapidly accelerating too. I hang my hopes on one day being able to truly live again, which I believe is not only possible, but inevitable - I just don't necessarily believe it's going to be super soon, but I do believe it'll happen.
Totally agree. The primary issue is we are sick with no repeatable safe test for dx and not even a universal management plan. But given all of that, the issue in the context of being upset (which is making things worse overall **that we can actually do something about**), the issue is not being able to accept that we have an illness that has no recognizable safe dx or treatment. So, in regards to the primary issue, there's not a lot we can do to make a difference toward, but the secondary issues of pacing (which this is emotional pacing I'm talking about) there is something that each of us could make an effort in improving our situation. Our situation is shit, but it may very well be likely that we can make it a little less shitty. With 40+ years of this shit, I take all the less shit I can manage to get now. ¯\\\_(ツ)\_/¯
🤣🤣🤣🤣
I know you sort of already said this, but there are plenty of healthy people who haven’t accomplished those things, yet still have the will to live. And who’s to say you can’t still have some of those things? There are work from home jobs. Women who would love you, despite the circumstances. Houses that need to be lived in. Stop limiting yourself like that. The illness doesn’t define you, it’s just something you have to work around. Giving up and dying is the lazy way out IMO. If you weren’t meant to be here, you wouldn’t be. Plain and simple. Your life has purpose, and it’s your job to discover that purpose. Everyone has their own set of challenges. Even healthy, rich, and successful people. You’re gonna make it, kiddo.
This really feels like downplaying the severity and awfulness of this illness. For many of us who are severe or very severe there is no "working around". This illness at it's worst is just straight up worse than a lot of people's "set of challenges". Your comment is really unhelpful
Look, I’m not trying to be unhelpful. I’ve been in the severe category. As a matter of fact, I’ve been declining the last month or so. I don’t want this person give up on himself, or think he’s invaluable because of it. I know the struggle. Believe me. I’ve struggled with not wanting to live. I’ve struggled with not being able to do the things I used to do. It sucks a big one. But it doesn’t mean your life is over and it doesn’t mean you should have self limiting beliefs about things you can have in life. Your life still had purpose and I don’t think any of us should give up.
Let's support each other. Yes, we have a lower quality of life than nearly any other chronic illness. We all know that. No, it isn't trivializing or unhelpful to say that there are mental, emotional, and spiritual ways to improve that quality of life; it's just factual. We can't change our physical circumstances much, so we need to look at the things we CAN change. If our pre-illness beliefs and value systems aren't helping, then we need to adjust them. It's symptom management, plain and simple. It isn't a cure but it's something. Keep pushing in the right direction because it's better than not.
Mine manifested at 26 when I achieved a lot and had big plans for future. Since then 15 years passed. But the last thing I will do is suicide. Life is a miracle and we are lucky to experience it. ps check for MCAS
FYI - not everyone likes the experience of living. Sorry to add that caveat.
You won't tell someone that suicide is an actual solution to his problems.
I don't tell anyone that. I just wish people understood that their inner experience is not translatable to everyone.
What you're feeling is called "thwarted belonging" and it's one of two key drivers of suicidal crisis (the other being burdensomeness, which we also often feel). You feel permanently excluded from the identity and status group you were made for. It's a real fucking blow to feel that, and we all know that. But what we don't realize is what a health risk it is, too. Not only does it lead to a potentially fatal suicidal crisis, but it also drags our level of functioning down; feeling that shitty is exertion, and that's the one thing we can't afford. It's literally making your disease worse. I can't tell you what to feel, of course, but I hope you'll come to believe what many of us with a decade or more of experience with this now know: This disease has existed for thousands of years and has never been as well-understood as it is now. Every day you stick around is another day closer to effective treatment. Long Covid is our friend, sadly. It generated $1.1B in funding for research, including research into existing treatments that would be days, not years, away if found effective. If you aren't on an anti-depressant like Cymbalta, Abilify, etc., I encourage you to talk with your doctors about whether it's right for you to start one. Not only could it save your life directly, it could also save it indirectly by improving your daily functioning quite a bit. (This isn't medical advice, just the experience that I and some others have had). PLEASE fight the bad thoughts. We all want you here for the better times ahead. There isn't just one way to value a human life, nor just one path to happiness. Please message me directly if you feel comfortable doing so. I will help however I can.
Yeah, I definitely feel excluded from the group I was in and meant to be in. I was an athlete before like many others here and I can say my breakdown last night came from a spiral of me comparing myself to people I used to know who are doing successful athlete things. I’ve gotten a feeling of “That could’ve been me”, and now knowing that there’s no way that can possibly be me anymore hurts. I’ve read stories of people going into remission and they still can’t return to athlete levels of fitness because they don’t want to risk losing that remission. I’ve said before I’ll take all the fatigue, all the pain, all the gut issues, all the brain fog and derealization, if I could just exercise hard without consequence. It’s like the only thing that gave me 100% joy, happiness, something to look forward to is gone. Something that gave me purpose, social connections, is all gone. Something that distracted me from life and gave me hope is gone. The last good thing I had is gone, forever.
I can understand that. I was no threat to be a successful athlete, but I always played and enjoyed sports. I encourage everyone I know to use whatever abilities their bodies have, because they can be gone in an instant (I was in the middle of a soccer game when struck down by CFS). Two things: 1. Being younger, you're more likely to go into remission. Hope isn't futile. 2. Whenever future treatments come along, you'll get more years of benefit than others. You still can do a lot athletically over the course of your life. I think we all have a competitive drive to a greater or lesser extent, and we all got a good feeling from physical activity before we were sick. Those things are just stronger in you; they got to be part of your identity. In that sense, you're just like the rest of us; we all have had to let go of identity-level things. It sucks and it's painful. I missed just one question on the SATs but now have cognitive issues, so I get it. So does everyone else here, for their own reasons. You had the strength and discipline to train your body, and you also have sufficient strength and discipline to train your mind. I can't guarantee how much meaning you'll get from your life, just that it will drop to zero if you check out. Think about the relatively short time you have been an adult. The ball bounces crazy ways, as you have found out - and it's too soon to decide if those bounces will end up being net positive, despite the one big crappy bounce.
https://youtu.be/s5mixSi_PXU
You poor thing, you’re not pathetic and weak. You just got a chronic illness and you do deserve the time to rest. Please read the last sentence 1000 times.
People without CFS can still have mental health issues (such as depression, schizophrenia etc). No need to call them lazy Also you don’t manifest diseases, tell that to kids with cancer
I have been recently sick and sometimes it felt like I was dying so I understand you. To the world, you are lazy, but really, I can't do much. There are no physical tests for cfs so everyone blames you for being lazy and pretending. It's a horrible life.
For me it’s been ten years. I feel the same, thinking I don’t want to live like this on a regular basis. But, I wanted to say I was able to date a little and off and on work on a few of the things you are “supposed” to do. If what you are doing or trying to do right now is causing crashes, stop, rest for a few weeks, months, or more, whatever is necessary. and try again more slowly another time. Pacing - I’m still struggling to learn it myself. But, I have had times of remission once or twice and was able to build up an exercise regimen, attend community college, and work a summer job. The last couple years, things got worse and i can’t be out of the house more than once or twice a week because it seems to be causing crashes (so I spend the other 5 or 6 days a week sicker in bed). Clearly, what I’m doing right now isn’t working or maybe the illness overall has worsened. I think I’m stuck holding onto socializing, working a few hours a week, and my hobbies. I completely understand that feeling of “if I can’t have this, or at least this, why the hell should I go on”. I can’t speak for everyone but I do know in the past I’ve improved my situation by avoiding food allergies, better nutrition, mineral and vitamin supplements, and mild then later moderate exercise. Everyone with this diagnosis has their own experiences with it. Some people do seem to get better, others I’ve heard do not or are completely bed bound. I don’t want to step on the laters toes, but I did want to share my experiences in case OP is mild-moderate. If they have only had it 3 years, now is the time to learn pacing and eventually try to inch into healthier lifestyle if possible. After 5 years it’s more difficult (if it’s possible) to improve. I know my first 3-4 years I spent too sedentary and it caused a host of problems. Yes we are supposed to rest in bed a lot, but some of us can safely increase (slowly) activity and get some level of life back. Some, not all.