In hindsight, my spinal cord injury sustained in 2000 seems so easy now. It was challenging to stay fit following the injury, but my aerobics program and manual wheelchair helped a lot. Now I use a power chair to help conserve energy so I can make it through my day.
Having myasthenia gravis, a neuromuscular and autoimmune disease, I receive intravenous immunoglobulin (IVIG) treatments to put back good antibodies that are limited by the disease.
I left the hospital bewildered one Thursday afternoon. After receiving my regular IVIG treatment, I was surprised when the scale showed I was 144 pounds!
Doctors find similarities between myasthenia gravis and multiple sclerosis. Health insurance companies classify the disease as muscular dystrophy. I take immuno-suppressants and steroids that stop muscle inflammation, which is one of the main symptoms of this condition.
What this means is fatigue for me. As a mentor explained, I have a hundred pennies of energy to use a day, provided yesterday was good.
At times, I feel overwhelmed by constantly babysitting my body. Taking care of kids and resting, working and resting, showering and resting, housekeeping and resting, and the same for everything else I have to do. My neurologist thinks I overdo it, but for me, this is my life.
Since I can no longer do repetitious exercise routines or use weights, I am not burning calories. If I tried my old workout I would be exhausted and having a four-year-old child makes that option impossible.
It doesn’t help that I am self-conscious. I have never been a big girl. I like looking good. Some are surprised and find my vanity frivolous considering I’m in a wheelchair. In fact, since the spinal cord injury, I insist on appearing like I am still put together, regardless of my limitations.
I can’t have Botox or use collagen creams because they are muscle relaxers. My need for self-preservation inside and out has become more determined. It’s apparent that my saving grace has always been that I thrive on challenges.
I tried calling weight management programs. One company thought I wasn’t qualified due to health risks, which I found odd considering their food was normal meals, just smaller portions. Moreover, the food consisted of high sodium content and even a little saturated fat, which was puzzling.
I can’t have a trainer until my symptoms become stable. Until then my daily exercise program of yoga, stretching (including my paralyzed legs), soft dance aerobics and meditation have to suffice.
After researching and reading all I can find in combating weight gain from steroids and fighting fatigue, I have found a solution.
I found that an anti-inflammatory food regimen, which is high in potassium and no more than 10 percent of protein a day, is very beneficial. Drweil.com and Paleodiet.com offer advice and recipes that has served me well.
After a few months I am down to 130 pounds. I have a smoothie each day made with green vegetables, fruits high in antioxidants and purified water. I realize that if I eat small meals consisting of a little meat, lots of fruits, and vegetables throughout the day, my body isn’t as tired either, which shows I am gratified completely.
–By Meena Dhanjal Outlaw, guest blogger and advisor to the Center for Research on Women with Disabilities at Baylor College of Medicine