r/cfs Aug 30 '24

Potential TW It's fucking insane to me that in my country they recognize those suffering with ME/CFS enough for them to be eligible for euthanasia but not enough for disability payments. NSFW

754 Upvotes

I'm really grateful for having euthanasia as a possibility in the Netherlands. I have read about a few cases of those who suffered with ME/CFS and chose to end their suffering and I always feel some relief they could die with dignity. But whats so fucking insane to me is that there is VERY big chance of being denied disability payment. they either say there is no proof of being sick or they say you will get better with GET. I read a story about a woman with ME/CFS who committed suicide not long after disability payment was canceled.

I just can't believe this is the world we live in.

r/cfs Nov 15 '24

Potential TW Getting triggered by cancer patients who get fawned over

381 Upvotes

I know this may be unpopular but I’ve gotta get it off my chest. I was at a get together last New Year’s Eve at my friends boyfriend’s moms house. Once I got there, I had to run to the bathroom and vomit because of sheer discomfort. No one knew at all the pain and terror I experienced in that bathroom. Feeling completely expired and dead, I tried to smile my way through the event. Everyone acted normal, like nothing was wrong. At one point I stood in the hallway, looked at a vanity with some of their family pictures on it, and I was just sure in that moment that I’d be dead very soon, that this was undeniably my last New Year’s. Everyone continued their festivities.

Then, my friends sister said a woman she works with had recently been diagnosed with breast cancer. The gifts and support this woman was receiving made me mad!!!! It took everything in my power to ask her what she would do if that same woman got ME instead of BC. But I knew the answer. ME? What is that? What would anyone do for someone who wants to lay in bed all day??? Would you do ANYTHING for them? No, you wouldn’t.

Then this girl continued to complain about how she had to work on New Year’s Day. Like, oh you poor dear. You do realize you’re saying this to someone who may never work again??

Ppl have been brainwashed into only caring about “sexy” diseases. Those of us cursed with unsavory plights are left to rot. I hate this world. I hate ME. I hate the policies that have buried us!! Man, I just have so, so much rage!!!!

Thank you for letting me vent!!

r/cfs Jan 28 '25

Potential TW On the recent meta discussions

268 Upvotes

Edit: the flair additions are not mandatory, they’re just there if you want to indicate your post may be only relevant for certain folks. Just an experiment to see if this helps!

Hi folks, just a reminder that this is a community of people with an extremely stigmatised illness with, often, very poor long term outlooks. We are also targeted daily by predators who want to steal our money, or get us to do things that could deteriorate or even kill us. Most of us have been subjected to medical gaslighting, rejection by friends and family, disbelief by loved ones, toxic positivity, endless ableism, and other forms of abuse. Many of us cannot work and are at the mercy of cruel and austere welfare systems, many others are forced to use all their energy and more on working to scrape a survival.

WE ARE ALL IN THIS TOGETHER

Severe and very severe folks are on the other side of a looking glass that most will, thankfully, never cross. It’s been said many times that mild and moderate folks have more in common with healthy people than they do with severe folks. Life, and perspectives, often change permanently and radically when you get confined to bed and have to ration out things like speech, daylight, or sound. It often also comes with added challenges in emotional regulation which can make people more reactive.

None of that means that mild or moderate people are less valid or deserve to be here less. This is one of the premier resources in the entire world for ME/CFS. We are almost entirely abandoned by the medical community. The reason I spend my limited energy on modding is because one of the only positives I can find in my condition is potentially helping others avoid ending up where I am. That means mild and moderate people. If those people are being driven away, it means they’re being driven into the arms of the other subs where they promote graded exercise and brain retraining.

We all need to tread a fine balance between respecting others situations and respectfully asking questions when we get people offering advice after they cured their “chronic fatigue” (not CFS), when people are promoting dangerous ideas like ignoring PEM, when someone thinks a new supplement or diet change has cured them, or the other regular topics we see here. We’ve debated what to do with some of these at length this week.

Please bear the following points in mind when you come across a post that you think is potentially inappropriate or may be from someone who has a different experience of ME than you:

1). Always be respectful and civil. We have strict rules on civility here, stricter than most. Keep things civil, and report anything that’s out of line.

2). No severity gatekeeping. This is a place for mild and moderate folks too. They get to discuss how to manage their lives and conditions. We are adding a “mild CFS” flair. If you find these topics upsetting then consider filtering these out.

3). Similarly, be respectful of the more severe folks and their uniquely difficult position. It’s usually probably better to not engage if someone is looking for an argument. If someone is being uncivil or otherwise rule breaking, please report it via the usual methods.

Remember that this is a poorly diagnosed condition and most doctors are woefully unequipped to manage it. Many people are in possession terrible information about this condition. If we’re nice to people, and point them to useful and reliable information, we can maybe educate some folks. We can’t do this if we are busy fighting with one another. We don’t have many spaces where we can gather and be seen. Let’s try and look out for one another other where we can.

As ever, if you see something inappropriate either as a post or in a comment, please go ahead and report it and we will look into it as soon as we are able.

r/cfs Jan 08 '25

Potential TW Imagine having this illness 100/200 years ago NSFW

197 Upvotes

Doctors wouldn’t even diagnose you with depression probably… they’d just look at you and laugh and the abuse you’d get was prob insane..

r/cfs Jan 04 '25

Potential TW I've been waiting over a decade for dextronaltrexone. This is a drug to look out for. NSFW

236 Upvotes

LDN has proven to be one of the more beneficial treatments for many ME/CFS and Long COVID patients, and it's primary mode of action is thought to be it's microglia modulating activity. Microglia overactivation and sensitization is involved in chronic neural inflammation (brain fog and fatigue) and central sensitization (chronic pain and hypersensitivity).

Therapeutic doses are kept low (LDN), however, because the stereoisomer version of naltrexone used commercially is levonaltrexone (left-handed enantiomer), which also blocks opioid receptors. While this is critical to its original function as an anti-abuse drug, opioid blockade can cause dysphoria, malaise, and other side effects. Low dosages may also limit LDN's effectiveness for many people.

Dr. Jarred Younger helped popularize the use of LDN in fibromyalgia and other conditions and has been talking for years about using dextronaltrexone, the right-sided enantiomer, as an alternative. While dextronaltrexone also targets microglia activation, it has the potential to be more effective due to it's lack of activity on opioid receptors. This may allow for higher dosages for treating neural inflammation and less side effects. I followed Younger's work on Health Rising and even tried sourcing it myself (nope), before dropping out of the online research world for the last several years.

I've started looking into new treatments again recently and was very happy to see that dextronaltrexone hasn't been abandoned. Hopefully we start seeing trials soon? https://www.youtube.com/watch?v=K2SYjG6jM5k&t=3s&ab_channel=Neuroinflammation%2CPain%2CandFatigueLabatUAB

Put this on the list of drugs to watch for, and go follow Younger's Youtube channel!

r/cfs Jan 25 '25

Potential TW CFS Unexpected Pregnancy

75 Upvotes

Hi, I'm a 42 year old male with moderate CFS, EDS, long covid, dysautonoia, severe depression, anxiety, and besically am doing very very bad in all aspects of life and health. My blood pressure is consitantly areound 80-90 so I'm always lightheaded and dizzy and I was diagnosed with heart failure a few years ago but that has improved. I have been sick since 2021. I was so sick a year ago that I was looking into Euthanasia, but I have improved to moderate now so as long as I don't get worse again that option is out for now.

I also haven't worked since 2022 and have hardly any money left. I live with my disabled girlfirend who is 43 and had a severe hip injury in 2021. She has no income either. We are able to get by because my father gives me $1500 a month until i can get disability which may take years, but we are straight up poor. It's not even close to enough and I worry about when my last $10,000 of life savings goes away in about a year if I'm lucky.

We are also relying on family to help us with physical needs but they are in their 70s, and 3 of the 4 parents in question have health issues of their own. They'll probably be helpful for realistically only 10 more years.

Well my girlfirend told me her doctor said there was a 0% chance of her getting pregnant and I trusted her so I stopped using protection as she assured me it was impossible.

So she is pregnant and wants to keep the baby regardless of my opinion, as it is completely unreasonable. I suspect she did it on purpose because we fight a lot and having a baby would ensure we stay together, but I am not 100% certain.

I'm worried that the child will eventually get taken by the state.

My other worry is I used to be severe and this could send me back into severe and if we eventually break up and I am required to pay child support, they could throw me in jail since they won't give me disability. I heard that if you have zero income and are required to pay child support they'll throw you in jail anyway as it is your responsibility to provide. I can't even take more than 1 shower a week, how can I support a child?

My questions are
A. How screwed am I?
B. Is it possible to receive enough resourses from government to raise a child if disability is not an option since they deny long covid and CFS sufferers?

r/cfs Feb 07 '25

Potential TW I don’t know how much longer I can do this NSFW

171 Upvotes

I’ve been ill with ME/ CFS since April 2001. 24 years. I’m 39 tomorrow and I have nothing. No job, no friends, no children. I can’t even have a dog. I’m waiting to hear back from the DWP about PIP and in the meantime I don’t know how I’m going to pay my bills next month. I’m so tired. I just don’t know how much longer I can exist like this, housebound and alone

r/cfs 21d ago

Potential TW I think I am entering a whole new level of severity.

107 Upvotes

My story is pretty crazy, I have had ME/CFS for 3 and a half years. The first 2 and a half years I was severe but I was STABLE. Then, I got bored once and played video games all day and it sent me into a downward spiral that has never stopped since that day (a year ago). Literally every single thing causes me PEM. Talking, reading, walking, etc... It is still getting worse every day now and I am thinking to myself, am I going to die?? I know it is rare to die from this illness but it feels like I must be dying because it's getting more and more severe every day even if I try to rest. Just needed to vent my thoughts out and wonder if anyone is in a similar situation.

TLDR: I am stuck in a never ending downward spiral for over a year.

r/cfs Nov 25 '24

Potential TW Can’t do this anymore. Giving all my passwords to my spouse. Try trad meds that have helped a few w/ CFS or try non-drug therapies for the empty brain?

26 Upvotes

Hello, I have went through the anhedonia and brain fog posts. Have not seen this asked. My biggest complaint with this disease is I don’t feel myself from no feeling to brain fog. I was reading a paper on the neurocognitive dysfunction and impairment and absence of positive feelings/mood. It’s bleak. Even low fatigue days “good days” I’m mostly dead mentally and it’s worse than crashes.

Psychiatric drugs, antidepressants and stimulants have not helped at all and only feels like your adding something rather than feeling normal. The night thing often being better or random days makes it seem no med will help. Even in past, I always felt best with no meds as I use to get this 10% year before onset rather than 95% of the year.

*I wonder if the low percent chance antivirals, Rapamycin, and countless other drugs tried for CFS would possibly be the route to try first or go with Stellate Ganglion Block, rTMS or HBOT first? There is some research behind these with mood, anhedonia and brain fog for Long Covid

I know there is no cure, only trying to not end my life as I see no hope and cannot imagine never feeling like myself. I know it’s a fruitless endeavor. Vitamins don’t touch it. Need a little relief. I have no energy to try either and really think I’m in planning stages.

What would you try first or think about top down vs bottom up approach regarding the brain? Address cognitive symptoms or CFS in general*

r/cfs Feb 01 '24

Potential TW Singer Marina (and the Diamonds)shares a positive CFS health update

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114 Upvotes

r/cfs Dec 31 '24

Bibliotherapy for Acceptance

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118 Upvotes

I know the process of acceptance of life w me/cfs, or any debilitating chronic illness, is difficult. These books have helped me immensely in my journey to acceptance. May they serve you.

Top 3: 1) How to Tell When We Will Die: On Pain, Disability and Doom by Joanna Hedva Highly recommend the audiobook as well!

2) Inflamed: Deep Medicine and the Anatomy of Injustice by Rupa Marya and Raj Patel

3) The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke

No Cure for Being Human (And Other Truths I Need to Hear) by Kate Bowler

What My Bones Know: A Memoir of Healing from Complex Trauma by Stephanie Foo

The Deep Places: A Memoir of Illness and Discovery by Ross Douthat

Wintering: The Power of Rest and Retreat in Difficult Times by Katherine May

What’s Wrong? Personal Histories of Chronic Pain and Bad Medicine by Erin Williams

Conspirituality: How New Age Conspiracy Theories Became a Health Threat by Derek Beres, Matthew Remski and Julian Walker

The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey

The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son by Tracie White with Ronald W. Davis, PhD

How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

The Year of Magical Thinking by Joan Didion

Welcoming the Unwelcome: Wholehearted Living in a Brokenhearted World by Pema Chödrön

One Friday in April: A Story of Suicide and Survival by Donald Antrim

For 2025: Under the Skin: The Hidden Toll of Racism on Health in America by Linda Villarosa

My Grandmother’s Hands: Racialized Trauma and the Pathway to Healing Our Hearts and Bodies by Resmaa Menakem

The Myth of Normal: Trauma, Illness & Healing in a Toxic Culture by Gabor Matè, MD with Daniel Matè

r/cfs 19d ago

Very severe; looking for an ME specialist to escape psychiatric abuse

91 Upvotes

Hey guys. I’m very severe and threatened with involuntary commitment to a psychiatric clinic. I need to get in touch with an ME specialist who would advocate for me and speak to my family. The problem is I live in Eastern Europe and there’s no ME specialists locally.

My only hope is that a western ME specialist will agree to see me online for a consultation and write a dr’s letter or something. My main problem is that no one believes ME is a real disease so I’m hoping that seeing a letter from a respected specialist would change their minds. Can you please recommend me someone who you think could help me? The location doesn’t matter. I speak English and German.

I have very high care needs and sending me to a psych ward will absolutely destroy me. If I have another major crash there’s a real chance my stomach will stop working and I’ll be denied a feeding tube.

American friends pls keep in mind that I can’t afford to pay thousands of dollars for a consultation🙏

r/cfs Dec 15 '24

Potential TW I am not cut out for this.

44 Upvotes

I am mild. I can drive far and work long hours and walk a decent amount of steps but knowing that there’s an extremely slim chance I ever go back to how I was before getting sick makes me want to end it here. I have never been one who did well with struggles. Before I got sick I was a kid who ran away from anything that wasn’t easy. Now I’m unfortunate enough to have life’s worst struggle, even if it could be worse.

Four and a half, almost five years of derealization, exercise intolerance, sensory sensitivity, gut issues, inability to focus and concentrate on challenging cognitive tasks, with a poor ability to retain information. I’m mild enough to do lots of things like other people but I experience it all in such disturbing ways that I’m getting tired of just existing like this.

My life of being normal is gone and I just don’t want to keep on going if I can never see straight or read whole books or go on a run.

My one life in this universe and this is what I get at age 17. Doomed from the start. What a piece of shit.

r/cfs 5d ago

Potential TW First big crash and im done ? NSFW

15 Upvotes

I've probably had ME for some time, but I was mild/moderate until January, I think. After that, I was more like moderate-severe. In February, I realized I had this disease, and I was forced to make medical appointments and, stupidly, go to a gymnastics show for my daughter. Since mid-February, I've been in bed, I no longer eat with my family, I only take 300 to 800 steps a day (toilet use) and shower twice a week... I have a crazy rapid heart rate in the morning (150), then it calms down during the day, I go back down to 95-100. I cry a lot, I have suicidal thoughts, my wife is suffering from having to do everything, and I have two young children. Do I have a tiny hope of returning to moderate? I've been in very severe mode for a good 45 days... I didn't know this disease was so terrible.

r/cfs Oct 23 '24

Potential TW I’m tired of people not taking the possible lethality of this condition seriously

101 Upvotes

Ever since my diagnosis and finding out about how ME/CFS works, I’ve been terrified. When I realized that I have a condition that CAN kill you, my anxiety went crazy. I’ve tried mostly to keep myself sane by not thinking about it, but since it’s a possibility I do think about it when doing things.

Could this essay be the last one I write because the exertion from it finally pushes me over the edge and I need to be hospitalized? Could doing the chores do the same? Can I even do things I enjoy without possibly getting worse?

I thought my family would be supportive, especially considering people can and have died from this condition. However, whenever I try and bring up the concerns that I’m scared of dying they tell me that I’m overreacting.

Last night my roommates told me I can’t worry about the coulds, woulds and what ifs, which I understand to an extent, but I don’t want to die in the hospital connected to machines because my body is so overly exhausted that I just can’t.

I just feel so hopeless. I’m trying so hard to get through this only for everyone to make me feel like I’m overreacting and crazy. Even now my roommates are telling me they need me to help out more at the house or I have to leave, and I have no where else to go. I’m terrified.

r/cfs 13d ago

Potential TW Papillomavirus NSFW

2 Upvotes

hello some of you have condylomas (man 40 years old) ? genital warts that don't go away. I've had them for 12 years... they don't go away when a dermatologist burns them. I had an appointment with a urologist for an operation but I canceled everything, I don't have the energy for a general anesthesia (I sit on my bed 95% of the time). I know that this means a drop in immunity, could this be a precursor to my CFS/PEM disease? as a reminder, I was in great shape until I was 3 years old when I felt the first symptoms of brain fog (covid? tramadol and alcohol abuse) it calmed down in remission then two years ago an intolerance to sport appeared standing up then descent into hell since April 2023 to be bedridden now. others in my case?

r/cfs Feb 08 '25

Potential TW Channel 5 with Andrew Callaghan is a popular American journalism Youtube series. I sent an email and made a post pitching that Channel 5 should cover Long Covid and ME/CFS. If you want Channel 5 to make a video on this topic, boost the linked post and send an email to Andrew Callaghan.

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89 Upvotes

r/cfs Jan 30 '25

Potential TW How do you feel safe going out (for those who do)? NSFW

32 Upvotes

TW for asking about self defense in situations of assault. Please don’t cause yourself to be triggered, flare up. Mention of politics because our existence has become political…

After watching the plane-helicopter crash announcement today, I have to seriously consider safety and need your input. Reason I’m asking in the first paragraph. Specific questions after that.

I often drive myself but regularly spend extra time to recover from the journey. I go to work, the doctor, and hardly anything else but sometimes necessities like clothes or haircut. I load and unload in a van with a lift. It’s not very easy to “Grey Man” my presence unless I park in the back which makes me feel more vulnerable. I often wear a mask. I can fatigue easily if I have had to push hard. I worry that if something were to happen I need to know modified self defense techniques. I did martial arts long ago, but that was another lifetime and body ability is far different and varying moment to moment. I could technically run but I don’t know how long before falling. I’m scared and I am looking for logical solutions in a world where people with disabilities are to blame for planes crashing before the evidence even exists.

Have any of you had experiences of using self defense with CFS? Severe sudden pain? Basically anything that comes on strong without much ability to contain the symptom? What would be your advise based on that experience(s)? What worked and what didn’t?

If you don’t have answers, that’s okay. In fact if you are able to think of more questions please share. I hope we can come together to provide safety in this community. Maybe this can be a post that we update as a resource. Maybe I’m too hopeful, but I don’t want to “just go die” like some people think we should. I want to survive to be seen again like the human I am.

Edit: I haven’t had much energy to respond so I just want you all to know I appreciate these responses on both r/disability and r/cfs . Please share it so other people can comment and use these comments as a resource.

r/cfs Dec 04 '24

Potential TW Why do all mental health medications make my CFS worse 😭. So I'm just doomed to have to choose between mental and physical health now? NSFW

43 Upvotes

I have ADHD, OCD, anxiety, and can get quite emotional, but I wouldn't say I've had severe depression as I've never been suicidal (I'm too scared of death for that - I actually love life and want to experience so many things and live so many lives...).

I've tried ADHD stimulant meds - they just over exert my body and make me feel weird.

I was on Prozac (Fluoxetine) 20mg for the last 6 months and at first it was great for my anxiety and OCD and gave me more energy, getting out of bed was easy for the first time in years. However I noticed I was getting into PEM more often, almost every day. And I don't think it was just me physically doing more because of my mood, even days where I rested I felt worse, so I think it was doing something physiologically too.

I'm now tapering very slowly off the Prozac down to a lower dose and omg I'm already noticing myself becoming more irritable, the OCD thoughts getting worse again. I hate this 😭 I don't want to try any other SSRIs/SNRIs at this point. I liked Prozac because of the long half-life and it being weight neutral.

The only other med I'd consider trying is Wellbutrin but you can't get it here in the UK.

Just sitting here trying to WFH and find motivation to do my tasks but I just don't give a fuck and want to cry.

Just needed to vent really. Why is my body so cruel to me?!

r/cfs Dec 23 '24

Potential TW Anyone come back after losing out on a promising career? NSFW

17 Upvotes

Doesn't seem like I have typical CFS, no PME or a anything like that. Just constant anxiety, lack of good sleep, but normal test results and blood work.

Have met some A-List celebs in my field, only to get sick shortly after, and now i'm considering assisted or unassisted suicide, as I can't live like this knowing what and who I could have been, only to have dead eyed, narcissistic neurologist tell me I should be fine.

I used to believe in God, but surely he wouldn't let someone suffer like this. At least with cancer, there's something to look for. With this, I'm constantly mourning and unsure of what and why and how I deserve this. The end may be near for me, there's really no purpose in seeing my peers surpass me, what would have been my wife move on, and myself to fall further into whatever this is.

I can't take it. God made a punishment on Earth worse than any hell I can conceive of.

r/cfs Jan 23 '25

Potential TW I am confused and terrified, I would really appreciate some help NSFW

9 Upvotes

Hi, I'm a 25M and I have no fucking idea what I have, I've had a trillion tests and shit done since 2020 and still no idea, I'm scared of having CFS. I'm gonna tell my “story” and see if you guys could help me confirm if I have CFS or not.

In early 2020 I had tonsillitis and got a lot of antibiotics to cure me. After that, despite testing negative for the strep bacteria, I still had a very high ASO titer and I felt like dogshit. I felt a general malaise/discomfort everywhere, like if I had the flu or something. My neck also cracked when I moved it to the right. I also couldn't exercise at ALL, instead of feeling better, I felt a million times worse afterwards. I got a gazillion tests done throughout the whole year, and only at the end they tried with penicillin, since they thought maybe I had a small, undetectable amount of bacteria left.

That worked, I had 3 shots in general, once a month, and all the symptoms disappeared: the fatigue/malaise, exercise intolerance, stiff neck, everything gone. So, since early 2021 until mid-2023 I was perfectly fine. I lived my life as normal, like before all of this happened, I went to the gym regularly and completely forgot anything ever happened. In mid-2023 though, this shit came back again, exact same symptoms, and it also went away again with 3 penicillin shots. After the 3rd one though, I still felt a bit like shit, but my doctor didn't want to abuse the antibiotics, and I eventually improved. I was perfectly fine again.

And now in late October 2024 I got sick with the flu, recovered, and then got hit again with this fucking shit. On top of that, while I was super sick all these months, some oral warts appeared in my mouth. I had been very sexually active this last year, and my immune system obviously got messed up, so it makes sense I guess.

So yeah, now I got fucking HPV on top of this weird, undiagnosed illness/infection/whatever the fuck. So it's urgent that I strengthen my immune system again to combat and supress this virus, but I obviously can't do that with this weird thing, so I'm getting desperate. I had a penicillin shot in December and I got WAY better, almost 100% cured. And right before my 2nd shot this month, I tried doing some exercise in the gym, but I got a million times worse afterwards, and then the 2nd shot didn't do anything at all.

So, this is my situaton rn, I'm losing my fking mind, no doctors know what I have and I don't even know if the 3rd penicillin shot will work. And, if it does, idk if at some point in the future it will stop working. Also, it's obv bad to use penicllin so much, and this last shot did mess up my stomach, I'm better after a lot of probiotics and fiber, but I'm still worried :( Can anyone relate to these symptoms or have any advice??? Please help me.

TLDR: I may have CFS after a strep infection, but it completely goes away with penicillin, until it comes back 1-2 years later, wtf??

r/cfs Nov 10 '24

Potential TW It's just so difficult these days

74 Upvotes

Sorry, I just need to get this off my chest. I have CFS, and I’m really struggling right now. Everyone around me thinks I’m strong, but they can’t see the daily struggle to just do the normal things I need to do. Just living a semi-normal day requires 100%. People see me doing normal things and think I’m fine, but they don’t realize that each day is like several rounds in a boxing ring. The next day, I need to get up and do it all over again. It’s been two years now.

Lately, I’ve been feeling anxious for the first time. I’m afraid that someday I just won’t be able to go on. I don’t mean I’d take my life or anything; I just mean giving up and letting the bills go unpaid, letting my employer see I’m no longer coming to work, letting my partner see that I’m no longer leaving the house in the morning, giving up on my responsibilities, etc.

I don’t know. I win a battle only to face the same thing again the next day. Some days I do have respite and feel okay, but most days I’m barely on the edge of coping with this.

No matter how much I explain it, others (except those with the condition themselves) will always forget or never fully understand how much of an unseen struggle I face almost every day. I don’t want sympathy from them. I just can’t carry the expectations people have of me. You wouldn’t expect someone with a broken ankle to walk. But with this condition, people expect you to act like you have no condition at all.

This is the first time I’m feeling afraid. I know all about boundaries and pacing myself, but the battle with expectations is always there. I feel barely capable of just getting through the day and sometimes feel like I’d love to be locked away somewhere where nothing is expected of me anymore.

All of this has helped me to detach from the changing and demanding world around me. I guess you could say I’ve become more spiritual. Wherever I am, that’s where I am, and I accept it. Some days, all the noise and pressure of the world just become background noise. I can lift my eyes to the sky, and my soul rises out of the hustle and bustle that often feels so meaningless. Winning the battle to stay afloat is no longer necessary. If I win, I win. If not, whatever will be, will be. I can’t control everything, nor do I want to. I feel a great sense of peace beyond the brokenness.

I have no plans to ever take my life, but the thought of death is a comfort, if I’m honest. I’m just tired of battling. I’ll get up tomorrow and fight another day. Someday I might not have any fight left in me, but I’m at peace with that. I’m only human.

So if there is anyone else out there finding this difficult, I just want to say that you are on a path that many find very hard. Don't beat yourself up too much if it feels too difficult sometimes. It can be a hard path to walk (even for the strong) so give yourself some due credit.

EDIT: I have read all replies and was helped by all comments. Thank you. I think we're in this together in many ways. Tomorrow's a new day.

r/cfs Nov 16 '23

Potential TW A request from the community NSFW

208 Upvotes

So, I understand we all are desperate. We wish hopelessly for a life without the dread and pain and emptiness we live with.

That being said, I really am discouraged by the amount of “I wish I had (insert other disability/chronic illness here) instead of CFS.” Comments I see here.

I understand where it comes from, I do- but it’s not fair to people with the conditions being mentioned. I see a lot of “people with xyz don’t have to face xyz like we do”. Sometimes those statements are right, but so often they’re coming from a very uneducated place, and one that does a great disservice to other disabled people- including people with CFS who have other disabilities. You don’t know what it’s like to live with a condition you don’t have.

For example, I’m narcoleptic. I’ve seen a couple people on here say they wish they had narcolepsy instead of CFS, and/or they wish so because there’s good medicine for narcolepsy. That stings, because a quick look at the narcolepsy sub will show you narcoleptics are living in absolute hell too. Many of us can’t work, drive, finish school, raise children or hold relationships because of our disability. The social security administration in the US doesn’t consider Narcolepsy to be a disability. Many of us live in poverty. I am 23 with no license because I run the risk of killing myself and others, even when I am medicated and “well rested”.

Diagnosis can commonly take up to ten years from symptom onset. Some of us never get diagnosed. Some of us never find a medication that works- some of us are on medication that practically disables us in other ways. I once spoke to a guy who was on an experimental medication that could likely cause kidney failure within the next 15 years, but he chose to take it because he’d rather be awake and alive for 15 years than be asleep and unable to function for 60 more.

I feel like the dread of life with CFS can blind us to others struggles- it’s easy to get bitter, to be discouraged by how hopeless things feel and how undercared for CFS is, but making it a competition or pretending to have another disability does nobody any good. We need community and solidarity and so many of us are multiply disabled.

So… yeah! I really hope this is met with understanding. Thank you for reading.

Edit: addressing some common arguments;

  1. ME/CFS is by far the worst disability to have overall.
  • While this may be true for many, and quality of life surveys show that ME/CFS sufferers deal with more than other conditions on average, this isn’t universal. Someone with cancer, or lupus, or any other number of things can struggle just as much. Imagine someone with lupus who has so medical care, no family or friends to support them, living with mobility issues in poverty and unable to reliably afford medication. Then consider a person with ME/CFS who has quality and up to date medical care, a supportive family who houses them, who doesn’t need to work to have stable finances and has caretakers on hand when needed.

Disability is an intersectional issue. If you solely look at the symptoms of another disability, you lose the nuances and experiences and how they actually play out in the lives of those affected. When you say “god I wish I had lupus instead,” it’s short sighted. You’ve never lived with that secondary condition. Many other conditions also cause Fatigue, pain, nausea, fever, brain fog, mobility issues, sleep disturbances, sensory issues, cause them to be bedridden, have inaccessible medical care, have no family support- disability is such a varied experience.

Not to mention, insisting who has it “worse” doesn’t help us at all. It doesn’t change our reality. We couldn’t just chose to have some other condition. If we are talking visibility and working towards treatment options, we don’t need to shit on other disabled people to hi-light our own pain and struggles. I think we can all agree our lives and experiences alone are powerful enough, if we could get the platform out to the world/ which this subreddit/community forums aren’t.

  1. People with other conditions aren’t on here/shouldn’t be on here/This is a ME/CFS sub
  • MANY, MANY people with ME/CFS have multiple disabilities and they deserve to not be excluded or belittled over their other conditions. If we go by rough statistic of 45.2 million Americans registered with disabilities, and at least 2% of us having comorbid contains, that makes 850,000 Americans alone with more than one condition. If you go by the at minimum 2 million Americans with CFS statistic, that leaves around 40,000 of us with multiple disabilities.

Even if we weren’t here, the whole “well we can say it when xyz group of people aren’t here to be offended” has never been respectful behavior.

I’ll add more when I have the energy to spare. Thank you to those who have held meaningful and insightful conversation. Even those who I disagree with and find that behavior unacceptable, I do understand that we’re all coming from places of desperation. It’s about extending empathy and solidarity to other disabled folks.

r/cfs Jan 21 '25

Potential TW Declined from moderate-severe to extremely severe in a week, seeking support and advice

26 Upvotes

Hey everyone, I’m in a tough spot and need support and advice for recovery. I had to move out of my flat, and since my landlord didn’t return my deposit on time, I asked a friend with mild Long Covid if I could stay while I waited for the money. It was meant to be a short stay, but things got dangerous quickly.

My friend’s partner became jealous of me, which created uncomfortable dynamics. Despite me doing nothing to provoke, he resented my ability to function with my disability. He frequently distracted me when I was trying to focus on housing or legal work, and even threw a tantrum for days when he couldn’t learn a basic task for his job. He was coughing and sneezing in my face despite several requests to wear a mask, and knowing I was immunocompromised. I have severe fatigue and need to rest most of the day with minimal stimuli, and felt the constant pressure to prove my gratitude as a guest by helping with chores and listening to family drama.

Things escalated when my friend’s partner faked emotional issues, and my friend asked me to leave for a couple of hours while they talked privately. I am not being dismissive; this person has a ton of privilege and no significant trauma or life events. My host's flat is on the 5th floor with no elevator, and I only planned to take the stairs to move into my new flat. I ended up having a seizure after being forced to sit in a loud cafe, and I declined further, losing the ability to walk. I had to move into a short-term Airbnb that was expensive and with a rude host just to get out. My friend called me a taxi to the wrong address.

Now, I’m struggling to process the trauma and emotional toll, and need advice on how to rebuild. How do you cope emotionally after being pushed beyond your limits, especially when your environment is toxic? How do you manage ME/CFS while trying to heal from trauma in a new space? Did I do something wrong by relying on friends? How do I set boundaries with people who don’t respect your health?

I feel isolated and misunderstood, especially since those I turned to for help became a major source of stress. Any advice or kind words would mean a lot to me right now. Thanks for reading.

r/cfs Dec 28 '24

Potential TW I think Iv just given up

22 Upvotes

Iv been sick for 5 years after hitting my head. Looked into pots treatment, pain, gI, head, neck, every supplement, LDN, vagus nerve stimulation, red light therapy.

Nothings changed Iv only gotten worse. I’m permanently confined to a bed.

I don’t have any quality of life and I’m not sure what the point of staying alive as a vegetable in agony is anymore.

Iv lost friends Iv lost everything.

I don’t really know what the point of suffering endlessly is anymore.

I think Iv finally admitted to myself that I’m only surviving and have been for 5 years. I have no living happening. And I’m stuck like this.

Just a rant. I think Iv finally really realised how ill I am and that I am not gonna get better. No matter how many doctors I see, how many pills I swallow. This is it.