My illness began with a sudden-onset of Epstein-Barr Virus (which is the virus that typically presents itself as mononucleosis). I became very, very sick in one particular hour on July 17, 2012. I thought I had food-poisoning or a vitamin overdose, because the dizziness, disorientation, weakness, and confusion were so overwhelming and terrifying. Instead of clearing up in a few days or a week, the illness continued relentlessly, and I was eventually diagnosed with EBV. In the first months of EBV, my primary symptoms were intense muscle and mental fatigue, complete absence of appetite (weight-loss), neck pain, nausea, and profound mental confusion.
I am being passed between doctors, trying to get a clear diagnosis, because it appears I have Chronic Epstein-Barr Virus. There is something wrong with my immune system, as EBV remains at high levels in my DNA. Because this is is rare, my illness may be recategorized under the broad-spectrum disorder of ME/CFS. Another name for for this complex disorder is Post-Viral Fatigue Syndrome, as it is often catalyzed by a major viral infection like EBV. Every day from July 17, 2012 through TODAY, I have felt tremendously sick.
On a daily basis, I have constant pain, centered primarily in my neck and the base of my head. It does not ever go away, though it varies in degree. It can be ignored at its weakest and, at its strongest, is completely consuming and only remedied by warm baths, pain medicine, and complete immobility. My neck pain is made worse by extra walking, extra chores, and any substantial time driving.
The fatigue is ever-present and I am challenged by the task of accurately explaining what this term means. It is not being tired, as understood by healthy people. I know what that feeling is (the feeling of two days without sleep, working double-shifts, drinking all night and hiking all day, etc.), and this is different. It is feeling disoriented, clumsy, and drained of all energy by the smallest tasks. I try to explain this shift in energy like this: for 25 years I woke up with around $300 in my back pocket every morning. Some days it could be a bit less or a bit more (say I had a sleepless night or, conversely, ate a big, nutritious meal and slept 8 hours), but it was around $300, which I could expend any way I wanted over the course of the day. And each morning the cash would return. With this illness, for over a year (despite sleep, nutrition, rest, comfort, happiness, optimism, etc.), I only wake up with around $80 to spend over the course of the day. And it is all spent on very basic tasks- menial activities that wouldn’t have even been labelled tasks in the past.
When I have tried to “snap out of it” or “build back up” with light exercising, I always, always “pay for it” with immense fatigue and heightened pain following the exercise. Even a long day will usually make my muscles- from my neck to my thighs, calves, and even torso muscles- wobbly, twitching, and sore (for some perspective, I used to run half-marathons, wait tables, and backpack regularly… so I know and used to love the healthy kind of sore). If I push myself beyond very quiet, calculated daily life, my symptoms can flare up and spiral out of control and I can be rendered bedridden and disoriented for days.
I am a lot better today than I was in the first six months of illness, but I am not steadily getting better. My symptoms keep me from engaging socially, exploring the city I live in, holding a job, traveling, doing any kind of physically-demanding project, and being comfortable for more than an hour here and there.
It is uncertain what the course of my illness will be.
I have been blessed with the opportunity to try the following treatments (with no improvement): IgG infusions, anti-virals, physical therapy, steroid therapy, acupuncture, herbal remedies, Chinese medicine, psychiatry sessions, gluten-free/dairy-free diet for 4 months, anti-depressants for chronic pain, and a slew of different pain medicines and muscle relaxants.
I hope to pursue more treatments, including experimental medicines, as time goes on. I am, of course, praying confidently for (seemingly) spontaneous healing.
I want people to understand that if I was “just a little sick” or “a bit sluggish” I would not be living this way. I want nothing more than to put this behind me, rebuild my life, and enjoy the simple luxuries of healthy living. The gigantic roadblock is my physical disability from this illness.