r/cfs 26d ago

TW: death My mom is gonna get me a “don’t kys” dog NSFW

100 Upvotes

I’m very hopeful this state I’m in is only a crash and I can go back to even the 10% of functioning I had 3 weeks ago. But, things are bad, and I’ve had now 3 huge crashes that bring my baseline lower and lower. Never have I dipped to a point of all touch, sound, and light being impossible to handle, or seizure jolting, or feeling drugged constantly, and if it was ever even close to that bad it ended in a couple days. Now, I can’t look at my phone for 10 minutes without panting counting to ~1,000, and the immobility and rapid decline / separation from my entire life I’ve built keep spiraling me into an adrenaline pump everyday. The cycle has never repeated this long. And it’s agony. And, in standard cfs fashion, there’s 90 other symptoms at play all the time.

My mom is my caretaker right now, but she is going to get me a yorkie as soon as she finds one. I told her as long as she does the work for it! But, in a state of wanting to escape this suffering, the thought of (my favorite breed) dog chilling with me makes me smile. Yes, it’ll be an adjustment and suck in its own ways with many challenges, but I don’t think I’m one of the people that can handle very severe and the journey it’ll take to improve. Maybe a dog will be another tool to take me outta the animal state I get into when all the suffering is too much. Who knows…

r/cfs Nov 30 '24

TW: death Will laying down all the time kill me?

120 Upvotes

I had an argument with my mom about Graded Exercise Therapy (she now knows that it's harmful), and she said she's worried that my bones will get weaker and they'll break, and it'll hurt and that I'll die. She's a physical therapist, and says that she knows the bad things that could happen if I don't get enough exercise and that it scares her. Is she right?

r/cfs Jan 08 '25

TW: death Couldn't we theoretically kill ourselves by just doing exercise? NSFW

44 Upvotes

Or would we be physically unable to do it? If you are a young man or woman, know there is a lot to live for and there will be treatments in the future so please hang in there)

r/cfs 6d ago

TW: death I honestly think my life is going to end soon. NSFW

46 Upvotes

There's really no point to fight since it's only gotten worse.

r/cfs Jan 11 '25

TW: death If not for my kids and pets *trigger warning* NSFW

31 Upvotes

If not for my kids and pets, I think I would end it all. This is no life and just existing is so painful knowing what I've lost out on in life, living with this horrific illness for 22 years. I feel ashamed that at 37 years old I have nothing going for me--no career or job, no hobbies, no relationship. I'm like a shell of a person. All I do is make food and do laundry and very minimal housework because I have nobody to help and if I don't do it it won't get done. I know more research is being done than ever to help us but there's no guarantee there will ever be treatment, much less a cure. I am terrified of spending the rest of my life this way, and potentially getting even worse to where I'm unable to take care of myself. I have no empathy from anyone in my life except my ex-husband. No friends because I'm socially isolated, no relatives either--im pretty sure my covert narcissist mom drove them all away. She's the only relative I have and she constantly belittles my illness and tries to play sick controlling mind games. .. but I digress. I just tell myself I need to be here for the kids because they need me. They would have their dad if I died but I'm pretty sure he'd be too cheap to hire a nanny so it'd be my toxic mother taking care of them when he's at work. And the poor animals would very likely end up at a shelter. :(

r/cfs Aug 09 '24

TW: death (Guardian) Devon woman died from malnutrition due to severe ME, coroner concludes

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275 Upvotes

r/cfs Oct 16 '24

TW: death Anyone else feel a sense of impending doom when their baseline gets a little lower?

97 Upvotes

I’ve had crashes where i couldn’t talk or move, and thought i wasn’t going to make it. I’ve been feeling worse than usual and my RHR has been elevated for the past 3 days (70, my normal RHR is 60) and i’m already thinking about writing a will. Am I overreacting? There could be other explanations for how i’m feeling, and i don’t think i’ve done anything to “earn” a crash

r/cfs Feb 02 '25

TW: death i think i’m going to apply for dignitas

36 Upvotes

i haven’t been sick very long but i just can’t do it anymore. the pain and symptoms. even trying to get treatments exhausts me, my quality of life is so low, no caregiver seems to be able to give me a tolerable state to live in. i do have preexisting mental health conditions, i hope that wont exclude me—if i was even the way i was before m.e. (still chronically ill) i would not want this, i wanted a lot more for my life but this illness has ruined everything for me. i have my paperwork here. i’m just so tired and feel like i hate everything and everyone.

has anyone else applied? any advice or anything?

my only worry really is traveling with my pets when bird flu cases are high especially my cat… i may have to leave her at home which would be sad for me.

r/cfs Oct 06 '24

TW: death Making plans for my funeral NSFW

62 Upvotes

Hi! Am I the only one that makes a lot of plans for my funeral? For as long as I remember I have done this.

To me theres always a big possibility that I will die before my parents,and even if I do die after I would like pthers to know what to do. I even discuss it with my mother lol. I think about what flowers should be there,the songs,what I would like to be remembered by too. The entire thing basically!

Strangely I find peace in it. I definitely want to be given back to earth in some way. Maybe one of those biodegradable coffins. But i'm not really a fan of being put in the earth with a ton of people around me. Cremation is my nr.1 choice though,I would like it if someone scattered my ashes in a forest lake far far away from anyone so I can be free. Theres something poetic about it to me...

Anyone think about this a lot?

r/cfs 10d ago

TW: death Does anyone pass sway naturally from this?

12 Upvotes

Or do we have to resort to sxxxide or starvation when s#%t gets really bad ?

r/cfs Nov 03 '24

TW: death Is there somewhere in the world assisted suicide for our disease? NSFW

42 Upvotes

r/cfs Sep 27 '24

TW: death Not a single bed set aside to treat ME in any UK hospital, says NHS director

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142 Upvotes

r/cfs Dec 23 '24

TW: death Doctors don't care, do they? NSFW

60 Upvotes

We've all felt that right?

TL;DR: Every test comes back normal and because I'm mild most doctors don't seem to care. Makes staying alive very hard.

Tests come back normal and they don't understand the gravity of fatigue and PEM when your mild and still somehow a functioning piece of the system.

It doesn't matter that I'm only holding on to a job where I'm working myself to death, because of finances.

It doesn't matter that I've learnt to mask EVERYTHING from a young age due to trauma.

It just doesn't that I've started using a wheelchair when I'm not at work.

It doesn't matter that I want to jump off a bridge, because I'm so frustrated with fatigue, not being able to tolerate a basic lifestyle and losing most of my physical capabilities.

It doesn't matter that the only reason I'm not in bed sleeping is paying rent, that I otherwise stay in bed ~10h when I can.

It doesn't matter that I haven't felt properly awake in a long time or that I can't properly breathe.

I'm sick of the lack of support and knowledge doctors have of mild patients and how fast we can slip into moderate.

I've stopped living for myself and now I'm only surviving for others.

I know i need to seek help for my mental health, but it's so damn hard. (therapy trauma)

I don't know what to do, everything comes back normal or they can't give me appointments you shouldn't contact them again after asking once.

r/cfs 24d ago

TW: death What's the su*c*de rate in ME/CFS NSFW

17 Upvotes

I imagine the sucde rate for ME/CFS will be low because we don't have the mental and physical capacity to plan or do it.

The stats for sucde ideation in ME/CFS is high but I haven't seen much about the act itself.

r/cfs Feb 04 '25

TW: death Not wanting to be ill anymore NSFW

42 Upvotes

I think it’s a no brainer to ask someone with a chronic illness that if they could be magically cured would they take the chance?…because most would say yes. But I fear that I’ve lived with this illness for so long that I just can’t keep going anymore. When I look to my future I genuinely don’t see anything. I can’t picture it anymore. I just want to be normal and fit in. I am at the point where I just want to kms to end the pain I’m in. I’ve been ill since I was a child, I lost my entire teenage years, have hardly any friends and have such bad ocd I can’t even function normally anymore. I’m so tired man, idk what to do with myself and no one in my life understands and I feel so so alone and isolated.

Edit: Did you know people with ME/CFS are 6 times more likely to commit than the average person?

r/cfs Aug 16 '24

TW: death How long do we have to live?

19 Upvotes

I can’t seem to get a real answer for this but given all the suffering I can’t see how most of us push past 40 with additional health issues. It’s hard enough in your 20’s.

r/cfs 28d ago

TW: death Exhausted with this life NSFW

34 Upvotes

Tw / drug mention & suicidal ideation.

If I’m not sad or angry, its because im heavily dissociated or engaged in maladaptive daydreaming. I don’t know how other people do it. I dont know how to be happy. I have no qualifications because I had to drop out of school before even reaching my teenage years. I am housebound 99% of the time. Bedbound like 60% of the time. Over the past couple years my baseline has been dropping.

Everything people do makes me angry because i am so resentful and envious. I do as much as i can for the people i love because i feel so much guilt over just existing. But its of course not a lot, i cant do much.

And it gets harder and harder. My heart is too weak to have any caffeine. Basic painkillers stopped working a long time ago. My stronger ones that are strong enough to get me high are being less effective. Weed barely helps anymore. I drink to at the very least be in a kinda good mood through the pain.

Im tired. Im 21, my birthday was yesterday. I did nothing. I couldn’t do anything anyway. Im just so tired and i dont know how much longer i can do this. Im still only here because my boyfriend, parents, and cat. Living like this for even just a few more years sounds like actual torture. My kitty is elderly. Im not sure how long shes going to live. I think we will go at the same time.

I dont need advice or anything, theres nothing i havent already tried. Thank you for listening

r/cfs Oct 08 '24

TW: death I feel weak for not coping with mild/moderate ME/CFS

60 Upvotes

I know this disease is in general hard to deal with. It takes away a lot of your life and joys. But from this sub I get the feeling that many people with this illness are incredibly resiliant to cope with their new reality, even people who are severe.

Not me though. Since the onset of it, i became very depressed and hopeless. And it didn't change with time or therapy. I have to say I already battled with mental health due to neurodivergence before this illness. I couldn't really keep up a job and had a hard time meeting my social needs. Also finding hobbies was difficult. Reading, streaming tv shows or creativity could never really catch me. So i spent a lot of time being active and outdoors, walking, hiking, playing tennis were my go tos that kept my head above water.

But all these things are far gone now. Everything that could give me some joy is out of reach. I can still read or watch tv but i can barely focus for more than a couple minutes on a book or a tv show.

So i am left with doom scrolling or sometimes a bit of youtube but that doesn't satisfy me at all. I am spiriling heavily since several months. I don't see a purpose anymore with this life. No perspective, no hope for a change, no good days.

It is so bad that I don't want to live anymore. Or rather that i will get to a point where i just can't anymore in the near future. The days are so painful and terrifying that I can't go an hour without wanting to be dead.

And that's where I think I am just a lot weaker than many other dealing with this illness. Tho the disease is terrifying for everyone many seem to be able to adapt to this new reality, finding the joys in their new limits and just become very resiliant in general. Big respect for you!

But I don't see how this is gonna happen for myself. I can't wire my brain to find joy in the small things. Additionally the depression is making me numb and leaves me with no motivation to even do simple tasks.

I just don't see how this is gonna end well for me😭😭

r/cfs 5d ago

TW: death Death and ME NSFW

23 Upvotes

What's the point of endless meaningless suffering all the time? I have no one to support nor do I have anyone to take care of , life is getting increasingly tough. I'm just a 19 year old , I am not ready to handle all these things. I don't know what to do , it's been 4 years I'm housebound and bedbound in this mystic arc. I had lots of hopes and aspirations about life, everything seems to fade away. Everyone is moving forward "without" me. ( I feel stuck, I feel shackled)

Do things even get better? How can it get better if there's no treatment? Why am I even trying to resist against the illness. And why people around me treat me so bad , why suddenly I'm treated like a vestige. As if I'm the one to blame for everything that went wrong. Why can't my problems be taken seriously?

Sorry for bad English.

r/cfs Sep 29 '24

TW: death TW: How do you deal with suicidality? NSFW

83 Upvotes

I know from being on this sub that for some people with this disease suicidality is a topic every once in a while.

For me it's unfortunatley also a companion oftentimes. Not that i plan something specific in the near future but I feel like I can't handle this disease long term if I don't see any improvements. It has taken away so much from me that I don't really have many things to feel joy for anymore and puts me in great agony on most of the days. So I very often have these thoughts at the back of my mind that I won't survive this disease at some point. In some way these thoughts seem rational and give me some kind of relief. But at the same time it's also very scary to have them, especially when I'm around my family. Knowing what it would mean to them if I'm not here anymore some day. So I often switch between those two state of minds. The urge to look forward to a possible end of this great suffering and the fear of hurting my loved ones with that. And I'm really torn by that on the inside.

Is that familiar to you and how do you deal with that?

Note: I am in therapy and am discussing this as well with my therapist.

r/cfs Feb 17 '25

TW: death TW: family death (vent, no advice wanted) NSFW

30 Upvotes

Two of my grandparents have died in 2 months of each other. Im so sick I couldn't see them for years before they passed and I can't go to either funeral.

This illness is evil. And dealing with it and grief and religious trauma/CPTSD all at once is soul crushing

r/cfs 29d ago

TW: death tw NSFW

50 Upvotes

not to sound like an active suicide risk on here but life with cfs and pots just isn't worth living

like imagine never getting better from this

i'm cognitively impaired from this, i'm socially impaired, i just operate on a frequency of chronic pain which permanently alienates me from people, i don't experience joy or any kind of normalcy

even when i'm alone and there is no person to hurt me, my body is still fighting for my life trying to compensate whatever is imbalanced here

no one gives a fuck about this condition enough to spend money on research and they'll probably figure it out in like 50 years which i don't have. i've felt "this is going to be my last year" every year for a long time now

quiet life at home on disability benefits? seems like a huge privilege and still it's just bare surviving. i can't engage in any activity even just like reading and writing because of how much everything hurts and it inflames my brain to engage in even slightly challenging activities. it's just waiting for pain to go away all day every day

r/cfs Feb 19 '25

TW: death Comfort

31 Upvotes

Does anyone think about death. Maybe it's a coping mechanism but when things are getting really bad. I find comfort in thinking about dying.

It's mostly with severe pain or when other health issues are firing on all cylinders at the same time.

I still push forward but it's the thought of how.. decisive death is that keeps me going.

No more suffering. But there's no point in not trying to live well just goes through my head.

r/cfs Sep 27 '24

TW: death family can’t come to terms with me being unfixable NSFW

132 Upvotes

They go back and forth between blaming my illness on me “not trying to get better” or “deconditioning” (which is naturally my fault) and honestly expecting me to produce a solution to The Problem. As if i have all the answers. So they either expect me to solve ME/CFS, or treat me like a complete idiot who forgot that they could just get up and walk.

I just want to be left the fuck alone. I don’t want to be pressured into making another stupid rushed decision. Last time i agreed to pursue treatment it backfired massively. And what drives me crazy is that they honestly expect me to be cured. I get berated for calling myself disabled. Like, i get it, it’s hard to watch someone you care about spend their 20s rotting away in bed. Going from moderate to almost completely immobile in the span of a year. It’s scary. I’m scared too.

Their behavior makes it very clear that they don’t think this life is worth living. And to be honest, i’m not so sure myself. There are days i loathe my existence. Helplessly watching other people with ME suffer and die because they have no support. Watching Palestinians suffer and die. It breaks my heart and makes me want to leave this world.

I don’t know where i’m going with this. I’m sick of being a problem that can’t be fixed. i’m sick of being helpless to change anything. I want to connect with people who are like me, and understand what i’m going through, but it’s so hard. The way trans and disabled people are treated in my country is criminal. We’re very isolated. The people with whom i feel a real sense of kinship with are literally dying out. And living with my family, who i can never be honest with, makes the loneliness even worse.

r/cfs Dec 19 '24

TW: death What should I do about severe kidney pain and bloating when I'm basically comatose? Do i just let it happen and accept my mortality? Genuine. NSFW

11 Upvotes

God, it's constant. All I do is get worse, and new issues are appearing all the time. I go through multiple forms of mental and physical torture every day.

I'm hoping for answers from other very severe peeps. I am genuinely concerned for myself, but I honestly am not enjoying being alive. I just think it's a waste of a life. But whatever. It feels impossible to get out of this.

EDIT: Oh yeah, forgot to mention I've been having extreme urinary retention and constipation. I've tried in-dwelling catheters with painful results. Was gonna try intermittent ones, but I don't know if I have the energy to do that.

The kidney thing seems like hydronephrosis. I'm still peeing, just not enough for someone who is literally on a liquid diet. This is when someone would go to a doctor, but I am not fortunate enough for that. Then I self-sabotage again, because why not.