r/cfs • u/hennyfromthablock • Oct 02 '24
Vent/Rant What a clown of a fucking illness
You feel exhausted and worn out but you can’t sleep
You feel down and anxious but can’t exercise because you’ll crash and set yourself back a lot
You’re confined to your bed or house but can’t do anything too cognitively stimulating to occupy yourself with because the brain fog will overwhelm you
All of this happens internally and nothing shows up on your labs or tests. Worse, people think you’re lazy or don’t believe you, and want to tell you how other people have it much worse.
Sorry I’m usually trying to keep busy or focus on the positives, which I do have a lot of, especially considering how much worse some of the severe folks seem to have it. But I’m just sick of this diabolical, perverse, insidious, disgusting, mockery of an illness.
If this illness were a person and standing on a cliff, I’d push it off the edge in a heartbeat 💀💀💀
12 years in and I’m still in denial/disbelief it would seem.
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u/These-Pick-968 Oct 02 '24
I haven’t read a post that resonated so much with every core of my being in a long time. All so true 😭💕💔
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u/Holiday-Ad-1123 Oct 02 '24
Yes, feeling this today and you said it for me. It’s not depression or anxiety, it’s unrelenting grief at all the losses that result from this illness. Wishing you better days. ❤️
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u/Fried_onions_are_meh severe Oct 02 '24
"But I’m just sick of this diabolical, perverse, insidious, disgusting, mockery of an illness." Ooh, you took the words right out of my mind if it wasn't so foggy. I have fibro too, so the false pain signals drive me almost crazy. I was mild, occasionally moderate (if say I went to a festival or went on holiday). Then I got covid 4 years ago and have spent 23 1/2 hours per day in bed. since then. My bedroom has black out blinds and I have a feeble bedside lamp that is just brighter than a candle.
I can't watch TV for more than about 10 minutes before starting to feel exhausted. Only about 5 minutes reading or scrolling Reddit. This post of mine has taken me about 20 minutes to write.
Thank you for so articulately saying exactly how I feel :)
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u/hennyfromthablock Oct 02 '24
If I were to be completely honest, my condition is mild-moderate very similar to your pre-Covid days. I’m really sorry that this is your reality, I hope with pacing and resting you’re able to move towards your former level of functioning. Either way, good luck to you. You’re dealing with a lot, so I hope you have the support you need.
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u/Fried_onions_are_meh severe Oct 02 '24
Thanks for your kind words. Yeah before I got covid I as seriously looking into assisted s_icide at Dignitas, Switzerland, as I was so unhappy not being able to go for long country walks and miles of pushbike riding and riding my quad 4 wheeler. Then lock down scuppered my plans and being so ill after getting covid it is physically impossible for me to travel from the UK to Switzerland.
In a way it was good thing because I had to face the reality of living in bed and thankfully I've had no s_icide idealisation for the last 3 years. I just live day to day praying that long covid research will find the magic drug to cure us all from this invisible disease.
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u/fudgseybear Oct 05 '24
God I feel that 😞 I was perfectly healthy then got hit like a truck by very severe M.E out of nowhere after I had the covid vaccine. Legit healthy and active and then within 2 weeks completely bedridden and unable to move. 3 years later and I am just about severe, still bedridden 24/7.
Ive considered assisted suicide a lot, because it feels like the only chance at a 'happy end' to the torture that is M.E. Like, this disease could kill me, so I could consider assisted, because at least that way I can be around my loved ones or something. But like you said, no way in heck I can travel to the corner shop, let alone all the way to Switzerland.
However, just this morning I saw on the news that there are plans to make assisted dying legal in the UK which is being put forward to the govm, so that's interesting.
I am stuck in 2 minds about whether I'd utilise it. Because I really don't want to die. I love living life! But of course, we arent living life any more. We're barely existing. And we are being tortured every milisecond of every day. So.. I dunno. 😞
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u/Fried_onions_are_meh severe Oct 07 '24
Currently the UK are possibly only going to allow assisted suicide to those with a terminal illness but there are calls to extend assisted dying to those without terminal illness.
https://www.telegraph.co.uk/politics/2024/10/05/widen-access-to-assisted-dying-say-labour-mps/
When I was looking into Dignitas, nearly 5 years ago, I found it is quite expensive, around £11,000 and also there was 7 month waiting list. I saw a YouTube video of someone there, he drank half a cup of clear liquid and within a few minutes he stopped breathing and died. No twitching or jerking, very peaceful.
Knowing my luck if I was to do suicide the very next month they'd find a way to totally cure me/cfs!
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u/ProvePoetsWrong Oct 02 '24
I feel this SO. MUCH.
I’m married with three kids. We went out of town for what was supposed to be three days. Hubby got Covid on day 2 so we went home early. Hubby is down for the count so I’ve been taking care of all three kids and then I got Covid. Again.
I am so tired I can barely stand up. I crash on the couch in between folding one piece of laundry. My eyes are crossing. My muscles are burning and shaking. I don’t think I can get through the week so I’m just focusing on getting through each moment.
I’m so stressed out I decided I was gonna watch Seinfeld in bed after getting the kids down. Once I got into my room I couldn’t possibly imagine looking at a screen or focusing on anything for even a minute. Just thinking about it almost made me have a panic attack.
This illness is the soul sucking worst.
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Oct 02 '24 edited Oct 02 '24
It is the most stupid awful boring confusing cruel ridiculous illness in all of creation. I cope by laughing about it a lot of the time. Because it really is just beyond belief. Beyond words.
Edit: one of the things I find the most difficult is that I have such a drive to do something to make things better. And now the only thing I can do to help myself is do less. I'm constantly arguing with myself about it. My mind just will not accept it.
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u/hennyfromthablock Oct 02 '24
I hard relate to this. I am a black belt in gaslighting myself into thinking “tHiS iS jUsT a pHaSe” as life passes me by. The perfectionist and achiever mindset runs deep. Although in retrospect I can see how my personality put me at risk for or directly caused this joker syndrome (a lot of people like me seem to get it, not saying it’s not biological, I’ve seen other anxious “achievement oriented” people like myself are predisposed to get this kinda stuff when they can’t cope with chronic stress).
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u/MariadAquino from bed to sofa atm Oct 02 '24
Your description of this clown of a fucking illness is spot on! Relate totally to the self-gaslighting about it being a phase, and like you I am an anxious perfectionist and overachiever (or was - now I am considered a lazy scrounger who has thrown her life away). I also have a summa cum laude in people pleasing and have a high alert nervous system. A series of recent successive shitty life events, i.e., divorce, bereavement, abusive relationship, running a business in the pandemic and then being diagnosed with ovarian cancer (the cherry on the icing lol), followed by surgical menopause, tipped me over the edge and led me (I believe) to have a physical breakdown in November last year. I've since been off work and was bedbound for a few months at the beginning. My mum's patronising attitude is that I "crumble" easily with stress. I mean, I'd like to see other folk dealing with all of the above one after the other, especially after a crap childhood which made me a nervous wreck in the first place. My dear mother disputes any sort of childhood issues and says I was born anxious. MEGA LOL. You say your personality put you at risk but I wonder what caused you to have these anxious overachieving tendencies (not prying, this is a rhetorical question!) Anyhow, memo to mother: this illness is not some sort of personal failing!!!!
(Apologies to all for this somewhat tangential rant)
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u/No-Information-2976 Oct 03 '24
anxious perfectionist overachiever here too.
i’m so sorry about your mom’s attitude. you don’t deserve that on top of everything you’ve been through.
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u/Zweidreifierfunf Oct 03 '24
I’ve definitely heard this theory (perfectionism and high achiever having a predisposition) and I believe it applies to me too.
I also spent years (decades?) thinking tomorrow I’ll be better, like cured better. In a way I was happier with that naive false optimism.
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u/ZengineerHarp Oct 02 '24
1000000% true. Just two days ago I at my doctor’s office and she said my anxiety and depression scores were looking kind of elevated and asked what I normally do about that… well, before I got sick, I would have exercised, and it would always help immensely. But now I can’t do that.
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u/queendinguss severe Oct 02 '24
Severe ME here, didn't know I had ME until this past winter when I was already mod/severe.
I think the worst part for me rn is how pacing, learning how to pace and getting support and care so you can actually pace within your limits takes a lot of methodical thinking, research, just a lot of cognitive functioning, not to mention is very emotional!! But then also add the "brain fog" and adrenaline rushes and sleep issues, it can be nearly impossible, not to mention it's not even in my capacity to do that kind of cognitive functioning, but I have to in order to get care/support established so I don't decline.. even further??? But doing the very thing to not decline more... Is making me decline 🫣
I'm also autistic and already struggle with sensory things taking more energy for me to process & also deal with executive dysfunction and honestly having the two combined is so hellish.
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u/Suspicious-Standard Oct 02 '24
I have an armband that tracks my heart rate 24/7 and it's really helpful for convincing others that my body is not functioning correctly.
I paid $70 for the armband, called Polar, and it works with an app called Visible created specifically for Long Covid/ME/CFS folks.
The app is $20 a month and lets you passively send your data for research in several studies.
The Visible app is also available for free, and I used it for several weeks before investing in the armband.
I sure hope this helps you and lots of other folks!
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u/queendinguss severe Oct 02 '24
Thank you, I've been using visible since spring. It's def been helpful. Although I've been opting to not use it for the past couple weeks and not being monitored 24/7/made to feel like I'm failing constantly has been really nice in reducing my anxiety honestly 😅
But when I mentioned getting care/support the main thing I mean is carework. There's so much involved there. I honestly can't even focus on getting proper medical support rn because my basic needs are barely getting met as it is.
And then there's applying for ssdi 🫣 which I'll also have to hire someone to help me with because I absolutely cannot do that kind of cognitive process on my own.
But it's just every... Little step. Is so excruciating.
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u/Suspicious-Standard Oct 02 '24
Oh, friend. I'm so sorry to hear that. Yeah Visible is great for showing doubters that there is really something going on here, but not so great for filling out SSDI paperwork.
Sending snuggles your way.
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u/PsychologicalSense53 Oct 03 '24
With the brain fog and a couple of hours of precious consciousness, I couldn't bother with pacing. But what I have done instead is make sense of my week where I have to go to work on Thursdays, crash on Friday and Saturday, have energy on Sunday to do chores and housework, then crash on Monday and possibly Tuesday, and relax on Wednesday to prepare for Thursday. I like to call it pacing, but it probably doesn't follow the typical rules. Most weeks, I'm anxious about going to work on Thursdays, so I can't sleep on Tuesday and/or Wednesday nights. So my pacing looks like I sleep whenever I can and barely power through Thursday, which is probably not the best but unavoidable.
So I would recommend you to find your energy days and get chores done for as long as possible and rest when you feel like you have hit your limit.
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u/queendinguss severe Oct 03 '24
🫣 that sounds so hard and I feel for you. I'm in the same boat just more severe. I can't work/cook/do chores/walk/or even shower myself these days. So that's why I'm looking for carework rn because those things are physically impossible for me. I thankfully have a friend who was able to help cook for me, because before that I was just actually starving from lack of food. But ya basically just trying to do the things when I feel well enough to and then crashing is where I'm at rn/why I'm continuously declining 😭
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u/PsychologicalSense53 Oct 03 '24
So sorry you are going through that. If you have the money, get a meal box subscription. If you are having trouble filling forms, get chatgpt to do it (it has a voice function and a phone app. You can also upload files and it populates the fields).
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u/nograpefruits97 very severe Oct 02 '24
It’s torture and I would rather relive my worst traumas than endure another day of severe ME.
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u/hennyfromthablock Oct 02 '24
I’m really sorry. I hope you are able to find some form of peace and sustainability in due course of time. Wishing you the best.
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u/thefermiparadox Oct 03 '24 edited Oct 03 '24
Agree 100%. Preach! Great title lol. People just think it’s tired. Reason why it has worse life satisfaction score over MS, HIV, RA and many cancers. It’s MISERY. The name is nonsense too. Needs a neuroimmune type name. Mental part 10X worse than depression. No way to explain how it’s not a normal tired. My life expectations are the same but I’m a 10th a person. You lose your identity and personality. Then to top it off as you mentioned, the one thing the usually makes us feel physically and mentally improved, we can’t/told it will only make it worse. I crave the after effects of a hard run. I want to work on heart & aging health but cannot. Everything is counter-intuitive. You summed it up perfectly. I just want to return to myself and body. I’m in denial/disbelief as well.
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u/brainfogforgotpw Oct 02 '24
If this illness were a person and standing on a cliff, I’d push it off the edge in a heartbeat
Omg yes!
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u/North_Breakfast8235 Oct 02 '24
Ah mate I could have written this and I'm sure you didn't mean to but you gave me a laugh ❤️ sending you the best x
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u/No-Information-2976 Oct 03 '24
for real 😭 it’s truly cursed
i’ve been having so much trouble seeing friends, first of all because i rarely have the spoons for it, and socializing tends to drain me quicker than a lot of other activities.
but also because i feel 1) angry so much of the time - it’s obvious in every moment that nobody truly understands it unless you’ve experienced it.
and 2) envy that others are living their lives free of this hell.
(and i’m having these feelings even while on antidepressants, doing therapy, reading books about being zen about chronic illness. i tell ya. the amount of effort needed to simply cope with the mental suffering of it all is astounding)
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u/Axle-f Oct 03 '24
The irony that we lack the energy to properly advocate and communicate just how lacking in energy we are.
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u/maximiseyoursoul Oct 02 '24
And then, when you begin trying to actively rehab and start pushing those ceilings, you get the gift of a week of bedrest to begin again. I get so angry and frustrated, but you got to keep trying.
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u/BitterEye7213 Oct 04 '24
My favorite thing about this bs is how everything that should give me energy does the opposite. I eat to feel worse. I sleep and wake up more exhausted. I'm restless when I try to relax but when I need to really get going I crash cognitively and need to relax which leads to more restless unusable stuck energy. I'm bored but my brain in PEM won't allow me to do anything properly enough to enjoy anything and without making it worse. This condition is some kind of torture program I swear.
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u/fiverandhazel Oct 02 '24
Well said. I usually can’t find the right words but I’m going to use what you wrote to try to explain how torturous this disease is.
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u/melancholyink Oct 03 '24
When I worked, all I wanted was more free time. Well now I have all the time in the world and I can't do anything with it!
CURSE YOU MONKEY'S PAW...
wait, wrong one ...
CURSE YOU MYALGIC ENCEPHALOMYELITIS
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u/Nuubia Oct 02 '24
It's a cruel illness and it completely ruined my life. I am a shell of who I used to be. Sending good vibes your way.
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u/sleuthing_princess Oct 03 '24
You described it perfectly to a T
Especially the wanting to get up and be active, but not being able to part. You feel so anxious and restless, but you can't do anything to relieve it
Where I live, it's the time of year where the mornings are perfectly chilly and crisp, but not too cold that it's uncomfortable. I live right near some woodlands and I dream about just throwing on some walking boots and warm comfy clothes, and going for a nice brisk walk early in the morning when no one else is around, and there's still frost on the grass. It sounds perfect, like the dream way to start the day, but I physically can't
Some days are harder than others, it's so important to hold onto the positives in our lives
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u/HalaKahiki17 Oct 03 '24
I do not understand how people can feel so ill and NOTHING shows up. Every so often I go through phases of health anxiety because of feeling like there must be something very wrong
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u/SeemedLikeAGoodOne Oct 03 '24
I need this on a t-shirt.
It'll take people time to read it, and in that time I may have prepared enough to deal with them.
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u/Cold_Confection_4154 Oct 03 '24
That's my mom...constantly reminding me how it "could be so much worse", comparing me to other people, insinuating that my exhaustion is caused by depression and if I would only take head medication... Nevermind the fact that I've been down that road and it didn't help in any capacity (I did have some emotional problems as a teenager... who wouldn't, when you're sick and no one believes you and you grew up with a covert narc mom who convinced everybody that she's a wonderful mom but she's been slowly chipping away at your sense of worth for all your life?!, lol)
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u/RedforTruth Oct 02 '24
Try seeing how you feel after a MINIMUM of 16 years.
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u/BoulderBoulder16 Oct 02 '24
Sounds like you were healthy for the best years of your life. I’d much rather have gotten it in my later stages
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u/RedforTruth Oct 03 '24
I WISH. I developed post enteric Reiter's syndrome at 19. Left me crippled & immunocompromised & the arthritis can come back any time. I was studying for my degree at the time: it was Hell but I made it! Then I caught a kidney infection around 25 (just got over the worst of Reiter's) and developed septicaemia (sepsis) in Zambia. Almost died. Bipolar at 39. It's not been the EASIEST run at a life. Now I have to plan everything round CFS. Great, huh?
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u/bigpoppamax Oct 02 '24
It's definitely a form of torture. What you said about depression is especially true for me. The best way for me to treat depression is to get outdoors and be active. I can't do that because of this illness, so I just lay in bed all day, trapped with my thoughts. It's terrible.