Humans of ME/CFS
I was 24 years old in 1998 when I contracted an acute case of mononucleosis. At first, the doctors feared I had contracted the HIV virus because my lymph nodes were as large as tennis balls. I also had an extremely high fever (whereas most cases do not exceed 37.5). The worst of the illness, however, came much later: I got tired very easily. I go to bed early at night and sleep until half past ten. I never go out in the evening. When I come back from work, I do not want to speak or meet anyone (including my parents) because I am so tired.
At first, the neurologist said I was “okay” and that it was “all was in my head.” (Yes, this is the same phrase I heard from many other patients!) Later, he said I was depressed and prescribed me SSRI which, as everyone can image, robbed me of more sleep. The hematologist suggested I do some shopping (and jokingly I thought, “Of course with your credit card, please!”) He thinks I would feel better if I could take some naps during the day. Since coming down with mononucleosis, my throat and neck area have become hypertrophic. I have been diagnosed with sleep disorders (sleep apnea) and subsequently had two surgeries (nasal septum and uvula removed), but nothing changed. I started a lot of research for solving this illness, trying to avoid gluten at first and also discovered the mercury intoxication issue. I have been allergic to thimerosal from a patch test since 1988 (at 14 years old) but never knew that my five dental amalgams, which have been in my mouth for 23 years eroding for bruxism, contained mercury. (Thimerosal is mercury salt). However, removing the amalgams safely and starting a detoxification program did not improve my situation. What I really need is to lie in bed with my eyes closed. I feel better as I am sinking in bed, with my heart beating faster and me breathing in deeper; my body feels as if it has been low in battery until then. Also, I found that sun exposure (one hour for day without UV sunscreen during spring and summer) helps me; it gives me more energy and I feel better. I know that I cannot ask my body more than it can give to me, but I am worsening year by year. That nap after lunch has turned to a nap before lunch even with the healthiest food. The worst thing about being sick is that even if I love spending time with other people, going out, taking a bicycle ride, or attending parties with my favorite DJs, I feel depressed because I am alone. My best friend is my bed. I am alone by default because it is terrible being with someone who does not have enough energy to live a shared life together. I am not sad about it; I understand that even if I loved another person I still do not have energy to give. Being with someone means giving attention and sharing thoughts, experiences, and a lifetime together. I am lucky I can still go to work. I am still smiling but it is a struggle every day.