Humans of ME/CFS

In January 1988, I got bronchitis and a penicillin shot and life as I knew it was over.   I had been a very active mother of two elementary aged girls, wife, and worked part-time. I also volunteered 70 hours a month, hiked, and gardened. I was rarely sick except for the previous few years when I’d had an annual bout of bronchitis.

In 1988, we were leaving for vacation so I got the penicillin shot. On the drive to our destination, I developed giant hives. Doctors thought it was an allergic reaction and told me to take benadryl, which I assumed caused the horrific fatigue that developed. Rapid succession of butterfly rash, general rashes, pain, flu-like feelings, fatigue, all of which had me bedridden by February. We ruled out every illness under the sun and a doctor finally diagnosed with ME/CFS 6 months later.

The first 10 years were a rollercoaster of relapse/remit, but never more than 50% of pre-illness energy. I lost my job and health insurance so medical care was minimal. I have yet to find a doctor with a usable knowledge of ME/CFS even though I was able to get health insurance about 7 years ago. After ten years, I had a very bad relapse and have progressively been more house bound.

On a good day, I have about 2 hours of usable energy. On a bad day, getting dressed is challenging.  No more hikes. No more gardening. Even showering is “iffy.” I haven’t worked for decades. My volunteering is minimal, if at all.

I keep a positive attitude and enjoy doing what I can. I have 2 adorable granddaughters, a kind and overworked husband, and do what I can when I can. This may not be what I planned, but I still can enjoy my family. I practice pacing which has helped some, I don’t feel flu-like much now. It has not stopped the progression and I haven’t had a remission in decades. I have no social life, which is difficult for my husband. It affects the entire family.

I do wish the medical professionals would step up for this illness. I have been sick most of my adult life. It has cost our family considerable distress financially, emotionally, and physically. My parents are in their late 80s and who is supposed to care for them since I can’t? I missed much of my children’s childhoods. And, the state of understanding about ME/CFS has barely changed. That is horrific and abominable.

I have, over time, developed additional illnesses: diabetes, autoimmune thyroiditis, and arthritis in most of my joints. I’m in constant pain even with meds. Who knows where this will lead but I’m not ready to give up yet. I have a firm religious faith, so I know this is temporary. If not for that, life with ME/CFS would be unbearable. I feel for those who got this while young and weren’t able to even start a life.  It is a terrible state of affairs, due to lack of health care, considering the prosperity of the country I live in.