Hi, I'm Mikael. My story real short; Was first diagnosed back in 1994, age 17, where I within 24 hours went from running to almost bed- and wheelchair bound. Hospitalized 3 week, 5 x IVIG, lost +10 kg bodymass, most muscle. Fought my way back to a restored life within 1 year, could join school during the time and graduate with my class. Went to military service, no looking back, no residues. Probable cause for outbreak #1; virus or campylobact.
Then, 19 years later, the symptoms came back, a bit slower this time. WIthin 3 days I could hardly walk and went to my Neuro. Got diagnosed, 9 days in hospital, again 5 x IVIG. Probable cause for outbreak #2; stressfull life with midlife lifestyle, challenging family situatation, high performing work in mangament and a long flu infection (3 weeks) a few months earlier.
Could not work for 2 months, then started parttime, but was to weak so after about 4 months I asked for parental leave for 6 months to recover and spend time with my family. The second time, beeing an adult, a dad with a career and 3 kids (age 3-8) was much worse than the first since so much was on the line. Now two years post diagnose I feel ok, I had to change jobs and climb back down the career ladder since I sometimes still suffer from fatigue and the energy doesn't last for career + family + home. On the whole I'm feeling quite allright and don't mourne what I lost (to much), I celebrate that I survived and fought my way back twice through hard work and strong will power. It's 50% in your head and 50% in your body if you do get back up.