Humans of ME/CFS
I was diagnosed with CFS in 1994 at age 38 while a Nurse Manager in charge of care for 800 inmates in the South Carolina Department of Corrections. Onset was sudden with an odd rattle in my lungs that could be felt by laying a hand on my back. I wasn’t ill, but was in a busy stressful job and home life. By ’99, I had to quit my career and, in 2000, my husband divorced me not wanting to deal with my illness that was so severe. I sobbed for years in disbelief at what my life had become and how I would continue to survive.
I did have depression then from what had happened, but in recent years have made a compromised peace with my reality as I have no other choice. I’m ashamed to admit that showers are far from daily, I go several weeks without leaving my house, which remains in need of deep cleaning as well. Food often consists of a bowl of cereal because I cannot stand up and cook. Most of my time is spent lying down as standing for any period is impossible.
Any stressor, whether physical, cognitive or emotional may crash me and render me borderline helpless for a minimum of three days. And it doesn’t take much; nothing that a normal person might imagine. Just one step too much, one sentence too much, one emotional upheaval too much. I will be 60 years old soon and was knocked down in the prime of my life and lost everything I had then including my self-respect due to doctors, friends and family not understanding the depth of my physical symptoms.
CFS is not taught in medical schools, students have never heard the acronym, and physicians are uneducated or simply don’t believe that it’s other than psychosomatic. My brother, who looks well, has MS, and he’s validated by society. Yet my CNS continues to collapse, I have a low-grade fever for 20 years now, debilitating fatigue follows my every move, and my pain is widespread and further puts up a wall around me. I’ve never seen a CFS expert. They’re all far away and cost many thousands and have had no success in curing anyone yet. Research money is minimal; $5 per patient with us 1 million suffering daily, and it would appear that more funding is not forthcoming.
So, this is my life, and it’s a very small life indeed compared to the strong, vigorous, highly intelligent woman that was making her mark on the world prior to that day in 1994 when the switch was turned off. I can’t concentrate to read, so I spend time with movies. I still have a handful of friends who come by, but it doesn’t resemble the hiking, camping, skiing, traveling life I was so in love with. I haven’t seen my family in Germany in many years as I can’t travel. In short, sadly, this is my CFS/ME/SEID story.