Humans of ME/CFS
In late February of 1981, I was finishing a grueling round of interviewing candidates for a management trainee program. On the last day, I suddenly became very sick with a high fever, extreme sore throat, and headache. I was so overwhelmed and could only get home with the help of a colleague. The doctor said I had a “viral infection.” I was in bed for two weeks feeling like I had been hit by a train.
I had to get back to work since my husband was in school. Being the main breadwinner at the time, I dragged myself back to work. Each break time or lunch, I would go to the ladies’ lounge with a timer so I could steal a little sleep whenever possible. I began having severe dizziness and what would later be diagnosed as severe migraines. Calling the exhaustion that this illness brings about as merely “fatigue” is laughable. I had been a runner and dancer before and know what fatigue from exercise or training is like. ME/CFS's exhaustion is at the cellular level and no one can properly describe it.
Thirty five years later, I still live in a very small “energy envelope” and even then, experience relapses that are of varying length and intensity. My world is very small. Thankfully, I have a spouse who took “in sickness and in health” seriously and has helped me to make it through this trip down a rabbit hole called ME/CFS. There is no “fighting” this illness; it will always win and make you pay. If you do not adapt to its restrictions, you will not survive. You also have to accept that most people will not believe you are truly sick. You have to develop a thick shell that protects you from such ignorance. I learned long ago not to put myself in situations where the little strength and health I have will be destroyed, though at times it is going to happen anyway.
I am thankful that I have discovered a hidden design talent and create needlework patterns on “good days;” they have been well received. I do have weeks, though, when I cannot create or stitch a thing. I tell publishers that if they want my work they just have to accept that I cannot always meet deadlines. ME/CFS drastically changed my life, but I have been blessed with a few cherished friends who are very protective of me. Believing that nothing happens in this life is left to “chance,” I have been able to accept that this is the life that was “best” for me. Someday in Glory I will know why that was. After having the illness for 35 years, I still do not give up hope that it will be better understood and maybe even successfully treated someday. It is exciting to see how much more seriously the illness is being taken and the amount of attention it is being given by prestigious researchers. It gives us hope that much more will be known about it before too many years come to pass.