Type 1 diabetes is no picnic, sure, but type 1 diabetes has never gotten in my way. It’s made things harder, but it’s never completely stopped me from doing something I want to do. (Well, except for that career piloting a commercial jet and becoming a Navy Seal, but I’ve let that go.) With diabetes, I could teach 7 power-yoga classes a week, bench-press 190 pounds, win powerlifting competitions, jump repeatedly onto 2-foot boxes, and sprint with a 140 lbs. dragging behind me on an iron sled tied to my waist.
Diabetes was freedom. With discipline around nutrition and insulin doses, and endless learning around exercise physiology, anything was possible with diabetes. Anything. Type 1 diabetics have climbed Mt. Everest, completed Ironman races, cycled 100 miles, and won the Olympics.
But for the past four years, unbeknownst to me, I’ve been gradually developing fibromyalgia—and it’s nothing like diabetes. Fibromyalgia is a chronic disorder characterized by widespread pain in the joints, tendons and muscles, as well as low levels of serotonin, severe fatigue, sleep disturbances, headaches, and depression. Often treated with muscle relaxants and anti-depressants, it’s shown that removing gluten, dairy, caffeine, alcohol, and artificial sweeteners can be very helpful, too, in lessening symptoms.
My fibromyalgia symptoms started out as a pain in my left lower back four years ago, followed by sharp pain in my elbows, then my wrists and hands, and then my entire left leg started tingling and cramping (and hasn’t stopped since) in 2011. MRIs showed no injuries in my spine. Full-body nerve-testing (which is surprising painful, by the way, sort of like getting a tattoo) couldn’t find any pinched nerves either. Chiropractors, acupuncturists, and physical therapists all had their own creative theories and no solutions that offered any relief.
Everybody said I was fine—but I knew something wasn’t right. By 2013, my feet were cramping during short walks, my knees were throbbing and felt like they were swelling (but they’re weren’t). I felt like I had to pee every 20 minutes, but I didn’t. And my hands started cramping up within 10 minutes of writing—to the point that I couldn’t keep typing. And my neck—oh yes, I almost forgot—my neck muscles would lock up so tightly for no reason that it felt like someone had implanted metal stakes on each side. I’d narrowed my only option for exercise down to walking with my dogs, walking on the treadmill, and occasionally tai chi. Everything else hurt somewhere, sometimes even tai chi.
More full-body MRIs, blood tests, and more blood tests all proved that I didn’t have multiple sclerosis, rheumatoid arthritis (or any kind of arthritis), Lyme’s disease, or any other weird thing they could think of to test me for.
By January 2014, with a new prescription for muscle relaxants to help my hands and neck—and my new inability to sleep well through the night—I decided I would try a little weightlifting for the first time in a year. After a 45-minute average weightlifting workout with a little bit of pain in my joints (which I sternly ignored because I was so happy to be using my muscles intensely again) I thought, “Alright! I feel awesome…sort of!” (Well, yes, my wrists and elbows were aching but I ignored it for as long as I could—it was a better day for my joints, I guess.)
But I paid for it. Over the next four weeks I experienced what I know now was a “fibromyalgia flare-up.” Those 4 weeks varied between horrible sleepless nights, irrational crying, brain fog to the point of just wanting to stare at the TV or go back to bed, and feeling like I had a 103 degree fever even though I had no fever at all. (And yet somehow, I kept up with my work! I’m not sure how.)
It was a textbook fibromyalgia flare-up, all because of a 45-minute workout that “over-exerted” my muscles and triggered a flare-up. With fibromyalgia, my entire goal each day will be about managing my energy, being careful in how I use energy, avoiding/reducing any stress either physical or mental, and dealing with the on-going symptoms as well as I can while living life. (Looking back to the Spring of 2013, I realize I also had a milder flare-up after buying a new house and moving in.)
While I’ve known something was wrong for a long time, the official diagnosis of fibromyalgia this February 2014 was the start of a grieving process. Because no matter how careful I am when moving or how stress-free I try to make my life, with fibromyalgia I cannot “overexert” myself in any way without paying the price with pain and flare-ups. The grieving process is for my life as an athlete.
I know I need to say goodbye to the idea of being the athlete I used to be, and goodbye to feeling powerful in my own muscles and bones. Goodbye to that awesome feeling of having my muscles pumped with blood, my heart beating through my chest, and that thrilling high of endorphins after an intense, grueling working. I need to accept even though there are days when my energy feels normal, and I would love to run sprints down the driveway and drop quickly for 50 push-ups…I cannot. I shouldn’t. In the words of my doctor, I could build my way up to the workout intensity of a grandmother.
Every time someone who hasn’t seen me in a while says, “Oh, you look so fit!” I can’t help but laugh at the fact that my loss of 35 pounds is the exact opposite. Sure I walk every day for over an hour and am much leaner than I used to be, but I “look” more fit because my competitive powerlifting muscle and bulk is gone. My athletic spirit.
Diabetes never took anything away from me. But fibromyalgia limits me. Stops me. Keeps me from doing things I love. I know now it’s likely I’ll never be able to hike a Vermont mountain again. I’ll never do deadlifts or power cleans or squats or box jumps.
And I hate to feel sorry for myself—I do. Being a pitiful victim never gets you far, and I don’t plan to grieve for long. But I know I need to grieve the loss of that athletic lifestyle, and continue to be thankful that this condition does not shorten my lifespan. In fact, it’s even motivated me to have super-tight control over my blood sugars, perhaps because it feels like I do have control over that, and somehow that eases the reality that I cannot control the fibromyalgia symptoms beyond taking them as they come and doing my best to prevent severe flare-ups.
There are far worse things to deal with than fibromyalgia—I know. Most people probably would look at me and think diabetes seems so much harder and scarier and more serious, because while diabetes is rather invisible, fibromyalgia is extremely invisible, to the point that some people don’t believe it’s real. And yet, the diabetes feels like freedom. Manageable with discipline, effort, and more effort. Diabetes feels like freedom.