Humans of ME/CFS
When I was in my mid-20s, my family went on a Florida vacation. We had a great week of swimming, shopping and eating seafood! On the way home, I started feeling very ill. Over the next four days, I got sicker, and my fever rose. Doctors discovered that my colon was swollen twice its normal size, and I was hospitalized for several days. Later, they deduced that an unidentified virus had ripped through my intestines. I didn’t feel well for a long time and whenever I experienced multiple stresses, I heard rumbling noises in my stomach and felt exhausted. After a couple days of bed-rest, I seemed to recover.
At age 30, my illness became chronic, and I was either bed or couch-bound for a year, unable to even ride in a car. Thankfully, my health improved after a year and I was able to work part-time for three years. I really enjoyed this position and was able to work because I lived at home, and my mom did most of the cooking and cleaning. I attended a Bible study during this time and met my husband. We married in 1996. My health started declining again after three years of working part-time, so I quit my job. I have been a homemaker for almost 18 years.
In 2000, after my second relapse, I became mostly housebound with ME/CFS. I was unable to drive for 1 1/2 years or cook at all for one year. I crawled around our house wearing my husband’s volleyball kneepads for 10 months because I didn’t have the energy to walk. In 2001, I qualified for a drug study with an experimental drug called Ampligen. Afterward, I chose to stay on Ampligen for an additional 21 months, so someone drove me to Charlotte twice weekly for three years. I went from 10% functioning ability and in a wheelchair to 65% functioning ability and being able to walk again for short distances by 2003. My health stayed at this level for a few years and then began to decline again in 2007, partly due to sleep apnea. Disappointed that a CPAP machine did not significantly improve my ME/CFS symptoms, I chose to begin Ampligen infusions again in May 2013 and am currently still on this drug.
ME/CFS and POTS (Postural Orthostatic Tachycardia Syndrome) have largely taken away many things I enjoy in life including distance walking, working even part-time, shopping, attending church, cooking, sewing and spending more time with friends. Anything involving concentration or brain energy is improving from Ampligen, including watching TV, reading, phone calls and computer time, but is still very limited. For the last several years, my traveling has been limited to within a two-hour radius of our home. Thankfully, the Ampligen infusions are slowly helping my cognitive and energy symptoms, however, the hardest part is getting people to believe how ill I am because I look so normal. I have suffered with ME/CFS for 23 years now.