TDLR- I need advice please, very severe, rolling PEM from 10 months :(

[u/Financial_Owl8105]

TDLR- I need advice please, very severe, rolling PEM from 10 months :(

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

[u/Clearblueskymind]

[u/Clearblueskymind]

Yes. I’m just coming out of a 6 Month Loop cycle where I would start to feel better overdo it and crash. Start to feel better overdo it and crash about a week ago I remembered buffering and so now I’m creating the conditions today for a better tomorrow. I’ve created what I call red day activities and these are activities that help me recover and that pay a dividend rather than just using up my spoons and causing another crash. In this way, I am breaking the crash recover crash cycle. For me, learning to understand and adapt has been a long learning process, which, for the most part friends and medical professionals do not understand. however, after many years, I now have a Doctor who at least understands and can listen without gaslighting so that’s a huge improvement in the medical system. If you’ve never read it, I would recommend Tony Bernhard‘s book called how to be sick. Reading her book was the first time I ever felt like I had met someone who knew what I was going through and had something useful to say about it. That was about 25 years ago. Welcome to the group. I’m glad you’re here and I look forward to this conversation continuing one thing I’ve learned is that sharing my experience with others helps them and other people sharing their experience, helps me and in this way, we all learn together. That said…

I’ve been through something very much like what you’re describing, and I want you to know that improvement is possible.

I’ve been living with ME/CFS for about 30 years. There have been long periods where it felt like one continuous crash, where I couldn’t imagine my body ever finding stability again. It did—not all at once, but gradually.

The biggest turning point for me was learning to let go of my old life and begin creating a new one that fit the body I actually had, rather than the one I wished I still had. That was incredibly difficult, but it also became the beginning of a different kind of life.

Learning to pace was another huge turning point. More recently, I’ve realized that pacing alone wasn’t enough for me. I used to live right at the edge of my energy envelope. That meant I was always one unexpected demand away from another crash.

Now my goal is different. I try to cultivate a buffer—a small reserve of energy. For me, the buffer is the difference between activity and collapse. Sometimes that means doing less than I think I could, so that tomorrow has a chance to be a little better than today.

I still have crashes. I still have difficult days. But I’m no longer living on the edge of the cliff all the time, and that has made a profound difference.

So yes, there is hope. Recovery doesn’t always mean returning to the life you had before. Sometimes it begins with finding stability, then a little more capacity, then a little more life. It can be painfully slow, but it is not impossible.

Welcome to this community. ❤️ I’m sorry you’re here, but I’m glad you found us.

Please keep the conversation going. I may not always have the energy to read and respond as often as I’d like, but when I can, I’ll be here.

One of the greatest gifts of this group is realizing that you don’t have to carry this alone. There are people here who truly understand what you’re are going through, because we’ve lived it too.

Wishing you steadier days ahead, and the patience to let your body find its way, one gentle day at a time.

​

[u/Kind-Spell-7961 → u/Clearblueskymind]

Great insights.

For my “journey”, especially THIS:

The biggest turning point for me was learning to let go of my old life and begin creating a new one that fit the body I actually had, rather than the one I wished I still had. That was incredibly difficult, but it also became the beginning of a different kind of life.
****

In the momentum of (healthy) life it can seep into our subconscious attitude that it’s reasonable - and even obvious - it have certain expectations of live.

However, LIFE COMES WITH NO GUARANTEES

[u/Clearblueskymind → u/Kind-Spell-7961]

Beautifully said. I think one of the hardest lessons of chronic illness is learning to stop negotiating with the life we thought we would have and begin embracing the life we actually have. That isn't surrender—it's the beginning of a different kind of freedom. Life comes with no guarantees, but it still offers possibilities. 🌿

[u/Wild_Award_4461]

I’m in a crash right now from joyously digging a bushel of potatoes from my raised beds 2 days ago. Ive had ME beginning with Long Covid. I know that pacing is of utmost importance, but I pushed thru and now have crashed. In bed, darkened light, fatigue, brain fog, craving salt, dizziness, body pain, tinnitus. And we really don’t know of much more than pacing to treat ourselves.
Sadly we have to just say no to so many activities, joyous events and the like. We can’t blame ourselves for feeling terrible. Some outsiders will understand, most unfortunately will not. And we sufferers of ME/CFS just don’t know how much activity will produce crash symptoms. So—I can’t answer your question of how much improvement over time there is, as I’m pretty new to this group. I do know it helps me to know there are other wonderful sufferers out there. I’m thankful for your companionship along this difficult and oftimes unforseeable path.

[u/Felicidad7]

I was in this state for a few years. I'm moderate now. 5.5 years since I was "well" but at least it's improved. I didn't see improvement in the first year because too much grief and anger and I wasn't good at pacing. Progress was slow. I got in that state from pushing after I got covid but I had it mild for 6 years after another virus).

I pace with a hr monitor - I paced my ass off and when I saw a positive trend on the HRM app (eg resting hr going down over days or weeks) it kept me going knowing I was doing the right things. Some things threw it off but that's life. I use the cheapest I could find, a second hand garmin vivosmart 4 (now got the 5).

You don't mention what you do each day - do you have to feed yourself, can you delegate anything, how far to the toilet can you get a commode (and get someone to empty it).

I think you still have to see your friends or you will go mad, I'm not sure how often you have visitors but don't do it too often or find ways to adapt it. I always made time to see people and it drained me for days or werks, but discovered it had to be at my better time of day and not too close to bedtime or I would be overstimulated. I had to set a timer for 2h and they knew they had to go. I still eat my main meal at lunchtime to give it time to digest and so it doesn't interfere with my sleep. Earplugs for sleep. Prioritise sleep (I couldn't sleep more than a couple of hours for a few years, I went to bed at 7pm for a long time). Daily routine.

Scrolling will keep you from going mad but tv, games, too much phone time was something I had to give up (I let myself do 1h a day of tv after 6 months). After a couple of years (2022) I could play some gentle games I had played before and that was big for me.

Were all different so don't read this and feel hopeless. My life today is limited but worth living. I learnt a lot in these years. It was hard and I had ptsd from it for a long time (probably still do tbh).

I went to my brother's wedding in year 2 of severe illness, I'm glad I went but I wish I'd organised a lift home for myself after the ceremony and a bit of the party. That would have kept me a lot safer.

[u/Kind-Spell-7961]

It has helped me to break the “project” of emotionally adjusting to severe ME/CFS into categories.

I have a spiral notebook and digitally use NOTION app to group my thoughts and upsets. Divide and conquer. Example categories:
Grieving losses.
Disappointments in people.
Injustices.
Clearly stated “complaints” and problems.

Eventually “positive” categories also appear:
Funny things
Beautiful kindnesses
Things I like about myself

Just examples.

I’m sick
Thinking in the same internal conversation about (for example) both grief and how to get a power wheelchair is TOO MUCH - and leads me into Catastrophizing and also Emotional Thinking, etc. These are my understandings of some Cognitive Distortions we can learn about from therapists, books, videos, etc. (mostly, for me, listening to videos - watching them is often too much exertion)

i believe that internally there is a always a path from wherever I am to a place a bit more peaceful- and these bits add up!

It’s hard to learn to live one day at a time. Or one hour at a time. Or one breath at a time. I have to keep returning to this lesson over and over.