Humans of ME/CFS
Prior to ME/CFS, I was an active mother who loved running her kids around, volunteering at church and playing tennis. I worked as a preschool dance teacher and a motivational speaker and writer. When I first got sick, my long time PCP searched everything she could for a cause. I remember the day I looked in her eyes and said “Don’t tell me I have Chronic Fatigue Syndrome…I don’t believe in it.” It was so stigmatized in the 80s, I was sure it was just a psychological problem for overworked people.
Thirteen and a half years later, I’ve been to four out-of-state doctors, the Mayo Clinic and Vanderbilt University. I am unable to work, I rarely leave the house and sometimes have several daytime hours in bed. My cognitive abilities have declined so much that even writing this short story took days. I do everything right. I pace, have a supine exercise routine and treat every symptom possible, but I continue to get sicker. I feel like I have the flu all of the time, I have various autonomic dysfunctions and migraines. We need research for ME/CFS because it’s the antithesis of physicians’ knowledge and typical training. My Gastroparesis requires that I eat low fiber and stay away from most fruits and vegetables. My POTS requires a high salt diet, more than I can stomach. Both are the opposite of “proper” nutrition. My body is intolerant of all physical exertion—I feel so much worse 24 hours later, and it can last for days or even weeks. Doctors always tells their patients to exercise.
My body is so sensitive to stimulation, that I have to use noise canceling headphones, and visits with groups of people have become impossible. Doctors would label this anti-social. I am sleepy all day and fight to not nap according to “proper sleep hygiene,” but in the evening, as all stimulus decrease (lights, sound, activity), my body becomes more alert, and I can’t fall asleep. I am not depressed. On the contrary, I am a positive person always searching for new things I can do in the midst of this horrible illness.
Doctors want me to take antidepressants. Doctors want me to take stimulants to fight the fatigue. My body reacts to stimulants with no high, and all crash. They make me so sick. On the other hand, medications that depress my ANS or CNS wake me up and make me feel more able to be active. And yet, if I do, I cycle back to the exertion reaction—only it’s stronger and longer because I was tricked by the meds to be more active. Everything about my illness is opposite of what doctors are trained to say and do to help me. Everything they tell me to try makes me sicker. I have become very weary of their ideas. This is why we need research. The things this illness does to my body do not fit into any currently understood illness.
