Humans of ME/CFS

I had just returned from traveling in March 2013 when I came down with what felt like the flu. After three weeks in bed, unable to even sit up most days, I thought it might be mono. Tests revealed we were close: CMV, Cytomegalovirus, which is a virus in the mono/Epstein Barr family. While I seemed to recover somewhat by April, I managed to drag myself through the motions of work (I owned a PR firm) through the summer, but by September it was clear that my recovery was going backwards. I was given a diagnosis of “Post Viral Syndrome” and told by my infectious disease doctor that some people are just “never the same.” (What!?)

Still unable to get out of bed, my career came to a grinding halt. My social and family activities stopped completely. My husband became sole caregiver to our two young sons (aged 6 and 4 at the time). I spent the next 18 months lying in a dark room, sleeping, unable to even move my limbs some days, struggling with disjointed thoughts and confusion, what I would later hear described as brain fog, but doesn’t come close to explaining what it is or how it feels.

There are moments of the day where things feel almost normal for an hour or two—where I am lucid and my thoughts follow a normal and clear succession—but then that deteriorates into a jumbled, chaotic mess of disjointed thoughts that don’t follow clear logic or understanding. I struggle to follow simple current events, plots of TV shows or stories that family and friends share. I just don’t follow the conversation. Yes it’s foggy. But to me it’s more like cobwebs that slow down your synapses so that it feels like the “Get Smart” doors slamming down in your brain. Nothing is getting through.

Year Two of my illness I was able to at least get out of bed for a little bit at a time, but I still primarily spend my days in bed. At least I am out of my pajamas now, but not much else has changed. I gave up my career in PR, gave up volunteering in my kids’ classrooms, gave up socializing and traveling. I’ve had to sit on the sidelines and watch my friends celebrate their birthdays while I am too sick to join the festivities. I’ve missed too many family adventures to count.

“Fatigue” is another word that just doesn’t fit the bill. It feels like I have lead in my veins. Sometimes I can’t speak; it requires too much energy. That isn’t “fatigue.” To me it is an inability to exert any energy. There is just nothing “in the tank” to fuel standing up or talking. My son asked me the other day what I did “before you were sick,” and it broke my heart to realize he may never get to see who I was before this illness rewrote my life.