Hello! :) What is important to know? Let's see. I'm 26 years old, working part-time, trying to figure out my life. Oh yes, and I've also had ME/CFS/CFIDS/Chronic Lyme/whathaveyou since 2008.
On April 1st, 2008 I woke up with a high fever, swollen tonsils, feeling beaten up and bashed in. Turns out I had mononucleosis. Instead of resting and seeing the healing process through to the end like a normal person, I took maybe 2.5 weeks off, went back to work full-time, and then went on a already-planned-and-paid-for backpacking trip through Europe for 3 weeks with my friend a month later. Very brilliant, I know.
I came back feeling even worse than before of course, but continued working full-time for a year after that. I could barely walk, my head felt like it was full of cotton, I started having arrhythmia and palpitations consistently, but I wasn't brave enough to leave work and just rest like I should have. I was in "survival mode" as there wasn't family around or anyone else I could really ask for help. So I spent a year stupidly pushing forward. I also for some reason decided that it would be a good time to study for and take the GRE and apply to graduate schools for my PhD. I guess I felt like I would be showing the illness who's boss and prove I still had control over my life. I guess I was wrong.
I paced my life so that I was hovering just above completely collapsing. Come June (exactly a year after I came back from my brilliant trip to Europe), I had found out I was accepted into a top-notch PhD program on the East Coast and had to decide what to do with myself. After much much internal struggle, I decided that I couldn't keep pushing myself. I realized I had to stop and fix my life. Epiphany number 1.
I quit my job and moved back home to my parents' house for two months. Although I felt sick as a dog, it was a relief not to have to struggle to just survive each day. As silly as it sounds, I had my first abstract thought in a year that first week back. It was so out of the place to think about something besides my next step or next series of events to get through the day, I was completely put off by it!
Two months later, although I was nowhere near well, I decided to push myself and go back to work full-time. Except this time it was much harder than before because taking time off actually caused me to crash; there was some shift in my biochemistry where letting my body rest made going back to killing myself physically much more painful and difficult than if I hadn't stopped. After two months of working and feeling like death, I broke down and realized that none of this was worth it. What use was building up a life that I couldn't enjoy and could barely even get through? Epiphany number 2. Before I even checked the options available to me, I decided that my #1 priority had to be my health, and if that meant quitting my job, then by god I would figure something out to make it work.
To make an unnecessarily long-winded story short, I figured out a way to take some time off of work and now work part-time. I've been going to see a fatigue specialist (MD) in the LA area and he's been absolutely wonderful. He diagnosed me with Lyme Disease in April 2012 (to my complete shock, since my illness started with a clear case of mononucleosis). There's no doubt in the diagnosis since the new Lyme culture test is 100% reliable. I started taking antibiotics soon after and have seen small, measured improvements. I am still so far from better, but I no longer live in perpetual fear of taking a single extra step because of how much it costs me. Now, 2.5 years after I started working part-time, I just fear every extra 10 steps! :)
Moral of the story? My health has become my #1 priority and I think this mental restructuring has helped me immensely. It might take many many years, but I will make it happen. I always feel like this condition seems so permanent, that there's no hope, that you never hear about people who get better from it. But I'm pretty determined to be one of those people; this just can't be it at 26! I might just be stupidly, naively optimistic, but I believe there is more in store for me :)