I'm 28.
Onset began at age 13. I was "mild", meaning I could fake normal. But I had to drop out of gymnastics, which was a HUGE passion of mine. I was lying on the bleachers in between routines, and couldn't complete a floor routine without collapsing, sometimes in front of the judges. I was unable to keep up with school, even though I was homeschooled.
At age 16 I had a summer of remission. Got caught up on school. I could run a mile with ease. I was able to keep food down. I thought I was fully better.
That fall I relapsed into a fairly severe case. Almost completely bedridden, severe pain, severe MCS, moderate to severe POTS, lots of food issues, lots of neuro symptoms, couldn't hold conversations, couldn't handle any daylight whatsoever, significant noise sensitivity, severe memory problems....you get the gist, It was a blur. My MCS and food issues became life-threatening, when I was reacting to all known foods (the latter) or when I was having life-threatening reactions no matter where i was (the MCS).
Fatigue so severe, so traumatic, I said it ought to be classified as a form of pain. I'd have to lay down and rest multiple times to and from a bathroom visit. I'd spend hours unable to roll over in bed, wanting to, but unable. Sometimes I'd lay there convincing myself to take the next breath, because it felt like if I didn't manually decide to breathe my body would simply be too tired to do it.
The severity of various aspects of it fluctuated some, but it basically stayed around that level for about 8.5 years. After all that time, and all our efforts, I was still experiencing life-threatening issues on multiple fronts. And i decided to cease treatment and seek to only be made comfortable until I died.
Ironically, that's what brought on a radical change that ended up bringing significant improvement for me. There's more to it than that, but I'm trying to be brief.
I'm about.....4 years into my recovery? It's hard for me to keep my timeline straight. I've been obviously too disabled to work my entire adult life. But the past couple years started freelancing odd jobs. And a couple months ago I landed a unique part time job that I'm BARELY able to keep up with....but I can do it! I must nap for several hours after work, and 3 days a week is the most I can do, with one or two recovery days after. But I'm doing it.
I still walk with hiking poles most of the time, and cannot walk long distances. And if I get out of breath my body has a very difficult time recovering. Occasionally I'll still have episodes where i become nearly paralyzed, which usually occur randomly during periods when I'm overdoing it, or sometimes in response to too much stimuli. It tends to last about 5-24 hours when it happens.
For me, even though I was very young, my illness became quite severe. I definitely consider myself one of the lucky ones to have recovered this much. I now have fairly severe complex PTSD from the ordeal, and must be careful about sharing anything from that time because it can trigger flashbacks. But I'm the happiest I've ever been and engaged to the love of my life, with nothing but hope for the future.
I hope this was helpful, and wishing you all the best in your journeys. <3