Humans of ME/CFS
As a former letter carrier, I know that not getting enough exercise is not the reason why I came down with CFS/ME. Feeling like I had the flu for weeks, then months, while doctors kept telling me nothing was wrong continued until I was led to a rheumatologist who could diagnose me properly. Although that same doctor was able to prescribe what I call my miracle medicine several years later, the Buspar I am now taking regularly has not cured me. Life is more bearable, though, as I struggle to keep a part-time job to supplement my disability income.
Since I have always been single, I am solely responsible for taking care of myself. This is especially hard when I come down with seasonal colds or flus, seeing as I still have to do all my own grocery shopping and cleaning. It is so hard to not be jealous of others who have husbands who let them stay home in bed to take care of themselves. I often wish that this life would be over already, as it is so difficult. But I do have many friends and family who help to make it worth living day to day. Also, there is always hope that someday someone will find a cure during my lifetime. If that happens, I would not want to have missed it!
Probably the hardest part of managing this illness is dealing with the attitudes of many of those around who think you have it made working part-time, believing that you are healthy enough to work full-time. Many times, I come home from work, feed myself something for dinner, even if it is just cereal and collapse for the night. Since people only see me at my best, being that I only come out when I am feeling well enough, they think I am like that all day. The reality is that much of my time is spent recuperating from being out and about.
I was thin and in excellent health when I became ill. Now I am overweight and seem to always be dealing with something attacking my immune system. To date, I have been bearing a sinus infection for almost four years, with no sign of relief even after surgery. It is very hard to keep smiling when you never feel really good, but I certainly do keep trying.
I continue to make plans for my future, all the while knowing that those plans could change in a heartbeat due to how I am faring on any given day. In the end, though, isn't that what all of us must come to grips with? I just have to deal with it daily.