Humans of ME/CFS

I know when it started. I can recall the drive to the hospital when I was 15. I remember feeling more horrible than I had ever felt before. I was diagnosed with Mononucleosis. Bedrest was the answer proclaimed the doctor. I got better I suppose but was never quite the same. As the years went by, I would be diagnosed with active mono again twice and multiple episodes of strep. One incident went undiagnosed as the strep had created abscesses deep in my neck tissue so the strep culture came back negative. Emergency surgery ensued a week later when I could not breathe.
With every severe illness, major physical or emotional trauma, I noticed that I would feel horrible again, reminiscent of how I felt on that drive when I was 15. Over time, any major stress or illness brought me to a new and lower plateau of health. I have been dismissed by doctors, treated like a hypochondriac, and had my symptoms blamed on everything from weight issues to anxiety disorder. My labs are usually pretty normal but I do not feel like everything’s normal.

Since my last surgery to have my gallbladder removed, the shortness of breath, PVCs, and the extreme muscle fatigue with little to almost no exertion have become almost intolerable. I am losing my ability to function at even a very minimal level. My doctors have told me that even if they label what is going on with me as CFS, there is no magic pill to make me better. The recommended treatment? Reduce stress and increase exercise. Seriously? I can barely stand up to take and shower and wash my hair without feeling like I am going to collapse, but I am supposed to increase my exercise. Yeah, ok.

Every day is a challenge. Every setback is a step backward that you know you will probably never really recover. Every time you try to tell the doctors the things that are happening, you get the glazing over of the eyes, the dismissive attitude, and you feel more and more alone. Despair creeps in to haunt what the future might hold for you and those you love if things get worse. It usually does get worse in fits and starts. I have not been ‘officially’ diagnosed with ME/CFS. I am almost sure that I have it though. Kaiser does not really recognize it. Positive Epstein Barr virus, recurrent mono, and the lack of other physical illnesses for my symptoms have me pretty convinced. I do have a nursing background so it is not an uneducated guess.

I do not know where to turn anymore. I feel invisible. I experience a certain level of despair every day. I try to hold out hope of a doctor out there who will understand what is going on, believe what I am telling them, and help me find a way to feel just a little better. With that doctor’s help, I might believe that life might be worth living again.