1) What was your life before?
I was loving my stressful job, with days of 12 or sometimes 16 hours of work. Sometimes I was annoyed from things not working out like I expected, but there were achievements as well. I have a wife, which I love, a great family, a bunch of good friends and a dog. All in all a very joyful life, mentally highly active, but not physically. (almost zero sports, besides walking/ playing with my dog every day and biking from time to time).
2) What was the onset? Any known triggers? What symptoms did you have? Did they changed within that year?
Viral onset for me. Many people with viral onset describe severe symptoms in the first weeks, then improving for a few days or weeks and then level out somewhere between.
My experience is similiar, I had a virus for two month or something, with very light symptoms, basically just sore throat. Then symptoms kicked in from one day to another. But all in all first weeks were pretty okay, like a flu doesnt come out. I had flu-like symptomes like head and joint aches, swollen lymph nodes, sore throat, cough/ phlegm, physical exaution. Additionally unfamiliar weird symptoms, like excessive sweating, feeling cold, especially in neck and legs, weight loss, pinning in breast, waking up often at night, mental exaution. The last one was escpecially weird, because having a flu I used to spend my time with computer gaming, watching films, ect., until its over. That wasnt possible this time, without instantly triggering symptoms. So, I rested, but no need to stay in bed or anything.
Then it becomes better for a few weeks, but symptoms never disappeared completely.
Over the following month some symptoms disappeared (head/ joint ache, pinning in breast, cough), while others becoming present (dry eyes, tinnitus or nausea), but most simpley doenst went away (like swollen lymph nodes, sore throat, phlegm, physical/ mental exaution, excessive sweating, feeling cold). Weight sustained at something between 5 and 10 % below before.
3) What was your severity in the first year?
Compared to what I read from others, I would consider myself as mild in the first year.
4) Did you reached your alltime baseline within that year or later?
More or less, thats where I am now. Nothing getting better nor worse, no matter what I do.
5) Did you experienced something more specific like POTS, PEM, fatigue, brainfog ect.?
I have POTS (50-60 bpms laying down and 90-100 bpm standing, sometime 110), but experienced no really issues, e.g. dizziness or something. Due to just starting pulse measuring during this year, I was wondering, whether I already had it before.
I dont think I experienced PEM for now. I had some weird experiences, though. One day, after a long meeting, I felt like not able to move any part of my body, just for half a hour or so. That just occured one time so far. But I suspect thats PEM have to feel like, just worse and much longer. How brave you guys must be, experiencing this for a really long time!
I’m not really exhausted or fatigued. Energy seems not to be the problem, but concentration, if I can say so. Maybe its brainfog. But I’m still able to do some very mentally demandful things, just not every time.
But interesting enough, I experience the first time in my life, that „stress“ triggers something. I used to be very stress resistant, indeed at work I was known for this. Now, every time I focus on things (even it is something enjoyful, like watching a movie or computer gaming), getting annoyed of something or doing light activities, I trigger something. At first especially sweating, feeling cold or sore throat kicks in.
6) What have you done in this year? Did you worked?
Most time, I read about mild affected people, they tried to proceed normally in the first year.
I tried to immediately calm down in the first weeks of illness. When things started to improve I got back to work. After two month of not getting better any further, I stayed at home.
Meanwhile I was seeing a million clueless doctors, reading a lot of stuff here and from other sources, trying to keep my symptoms tracked, lurking for correlations ect.
But all in all, I was home most of the time.
7) What about activities, even sports? How did this affected you?
I’m not homebound, but I try to take it very slowly. Doing some work, walking the dog, cooking, playing computer, watching a movie, gently exercise ect. Most of this triggers light symptoms from time to time, but I feel like it helps me staying sane.
I do every day one hour of exercise (pilates, core strengthening, lifting weights ect.) I’m feeling fine with it. Just a little sore throat and more sweating than usual. Additionaly I spend one hour either e-biking or on a half recumbent hometrainer. Normal biking is not really possible for me. Not because of strength, but feeling additionally flu-like afterwards and some feeling, possibly close to PEM the day after. Staying below 115 bpm heart rate and I’m pretty fine. Thats why e-biking and hometraing works for me.
All in all, I would say I'm able to do 6 to 8 hours of light activity (online time, watching a movie, reading, socializing, light work ect.) and 2 to 4 hours demandful activites (concentrated work, stressful computer gaming, physical exercise ect.).
8) Have you tried any treatments in this first year? Did they Changed anything?
Some supplements, but just for a few weeks. Nothing to expect any results from.
Since I got diagnosed with CCI/AAI from Dr. Gilete I do some sports (see above), because I am afraid of moving further surgery or something. I’m just not severe enough. So I try to improve things conventional.
I did water fasting for 7 days, on advise from my GP. It was hard, not mentally, but physically, with increased POTS (up to 145 bpm standing) and nausea. My sweating was highly reduced, but nothing I would consider as any improvement. Within 4 to 5 days after, everything got „normalized“ tot he level before, maybe with a slight improvement.
Biggest impact for now has getting in a better mood. Accept things.
9) What was your mood?
I can imagine a lot of feelings, depressed, confused, thankful for the life before, hopeful ect. Within the last year, I felt all of them.
The last month, I am pretty resigning. I try to arrange with things. Simply do things that feel good, despite some symptoms, and avoid annoying or obviously harmful things.
But I cant deny, that I am still thinking a lot about my illnes, wondering if it does make it worse sometimes.
10) Would you have changed anything? Have you any advice?
No idea about that one. Maybe I would take a better care before onset. Bad advice, because no one without an issue will ever read this.
