I started experiencing headaches and body pain at 12. They quickly became chronic and followed by migraines. By 14, the fibromyalgia (FM) and exhaustion were full-blown. I’d mentioned the headaches and pains a time or two to my doctor but 20 years ago, FM wasn’t commonly known and currently not in pre-pubescent females. I stopped mentioning it. I also didn’t tell my parents that I was suffering, which caused me to act out toward my family. My frustrations with the pain, lack of sleep, being bullied at school, and learning disabilities, accumulated into me being a downright terror (or hellspawn) at home. And at the time, that was ok because I knew my parents and brothers might not particularly like me, but they’d always love me.
At 18, I finally opened up to my parents and the three of us set out on a journey to figure out what was wrong. I felt like I had every test done and saw every doctor and specialist in Toronto (though I’m sure that wasn’t the case). I just wanted something found because then it could be dealt with. At 19, I was finally diagnosed by a rheumatologist after everything else was nixed. I started seeing a pain specialist for medicine (I tried just about everything from Lyrica and Cymbalta to morphine and other narcotics), nerve blocks, and Botox. None of it seemed to help. Eventually, I dropped out of university because the pain and exhaustion were too much to deal with. I spent a year on my parents’ couch doing nothing but seeing doctors. Some days were so bad that I couldn’t hold a plate for fear I’d drop it. A year later, I moved out to become a little more independent. I learned how to cook and started working out with a personal trainer. That was 10 years ago.
I’ve been seeing a therapist for the last 10 years. Have dealt with depression, denial about being depressed, and acceptance. The FM and migraines aren’t as much of a struggle as they used to be due to an infusion for the fibro and a medication for the migraines It’s not as bad as it was when I was a teenager and in university but it is still disabling. The CFS (ME) is what really gets to me day to day. I do live though. I grocery shop, do laundry, cook sometimes, see friends, and get myself to and from appointments.
The hope is one of the hardest parts. When someone says something worked great for them or a doctor says they can fix the FM/CFS (ME) or make it so it impacts my life so much less, the hope briefly flares. But every time, the hope gets crushed when things don’t work. So now my hope is a small thing that is filled with lots of skepticism.
That said, when I meet someone with fibro who is new to it or doesn’t know anyone else with it, I always offer to reach out and speak or meet with them because I know how isolating being a spoonie can be and no one deserves to deal with it alone. I truly believe that support is such a huge part of the solution to what we deal with. I am forever grateful that my family and friends are incredibly supportive.