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The original was posted on /r/cfs by /u/AnnoyedAFexmo on 2025-01-22 16:18:02+00:00.
I've been severely ill for years. I crashed hard in June 2020 and I never recovered. I spent two years bedridden. I was diagnosed with MECFS two years later. I have struggled even after 4 1/2 years of recovery to do more than walk 50 feet without being out of breath. Recovery seemed impossible improbable. I resigned myself to the fact that this was my life and I was going to deal with it. I changed my mindset during a period of such intense sensory sensitivity that I adopted an entire new mindset of presentness, just embracing the moment, not trying to fight it or prescribe meaning or feelings about it but just existing. It helped me survive the most horrible of times where walking 10 feet to the toilet left me out of breath for 2 minutes. I learned to rest one step at a time. My doctor suggested I might have CCI so I started wearing a cervical collar most of the time I was trying to do things and while it helped, it was not particularly comfortable or welcome. But I dealt with it.
I survived a psych ward stay where I was refused things like water and was told I was making up my condition including dry eyes that made it seem like I was looking into the sun. I couldn't brush my hair or bathe properly. I was entirely reliant on the help of others.
I did my best to survive, trying tons of POTS and antihistamine meds, slowly steadily getting better while trying to do my best to not push myself for years and years. I succeeded more than I failed but i experienced months of crashing at times which made life very difficult. Many tears were shed and sometimes it felt impossible.
I had some success with POTS meds and the help of the Bateman Horne Center specifically fludrocortisone, midrodrine (very helpful), corlanor (life changing) Aripiprazole (for me for sensory sensitivity) pyridostigmine (fairly helpful on ER). I took LDN which helped mitigate crashes for me as well.
Now to yesterday. I woke up yesterday knowing that things were a little different but I didn't expect that much from it. I had recently moved from Utah to a place at sea level and had noticed some slight differences in my ability but nothing incredibly groundbreaking. Yes I doubled my longest distance I had walked up to that point but I chalked it up to the lower elevation and humidity.
I went to move my things into a storage unit expecting nothing less than being a fly on the wall. Jokingly, I picked up a few picture frames and invoked the "I'm helping" meme. I thought this was pretty funny after all there's no way my weak body that had struggled for years could actually help.....right? But, unexpectedly, I wasn't tired. I had all my normal things, compression stockings, meds, liquid IV in me but some part of me was curious. Could I even do more?
I proceeded to do something stupid. I picked up a light box. Surely this would entirely exhaust me and I was truly be a tired out wallflower for hours. But....I wasn't. Somehow, someway, I was tired. I carried another box. And another one. And a heavier one and another heavier one and then one to chest level, then one at head level and while I strained, my recovery was near instantaneous. When I did get tired, I'd lay down for a few minutes to recuperate, drink a Powerade and then be back in the driver's seat of this project. Even when we had to repack it because in my naivety, i thought I could only carry a few things but now I was returning to a strength I hadn't had since 2020 maybe even 2017. I couldn't believe it.
I tried running. Actually a little jog around the area and....I could do it. My girlfriend broke down in tears. She had taken care of me for years and never believed that I could be better. Neither of us did. A little improvement but never expecting that I would best her in lifting things.
I'm floored. My life is changed. And You all deserve the same.
My takeaways from my experience: 1 I don't know how much improvement was from lower elevation or possible mold in my apartment that had water damage but changing my environment made massive changes. I went from sneezing constantly and having blocked nasal passages to very little of that, a normal amount. 2 I think researchers looking into MECFS need to view MECFS as the *result* of symptoms. There are many roads to MECFS, it is not a unique condition. My strong believe is PEM which I experienced in spades is the result of cells being so disrupted they can't adequately function through one of various means. Could be mitochrondria, could be not but it's something impacting energy pathways in someway for sure.
I believe that there is hope, that there will be for us a better life, we just need to figure out what is needed to get us there.
My fellow MECFS warriors, I wish you the best and all the strength in the world
