Humans of ME/CFS
This is very interesting and a subject close to my heart – ME/CFS. I’m not suggesting that I am an victim. However, my reality for the last 5 years has included approximately 30 full episodes of collapse without the ability to speak, move, or otherwise function. During these episodes, opening my eyes felt like a day trip and my body even lacked even the energy required to vomit, after which I experienced breathing episodes which mimicked someone who has just crossed a full marathon finish line. This breathing experience lasted for up to an hour before subsiding. Other episodes included urgent 24 hour coma-like sleep episodes without so much as a single movement and only slight respirations. Because my legs would become like jelly when standing, which was exacerbated by the addition of heat, showering became an ordeal and often ended with me stumbling straight to bed for an hour of recuperation.
A crazy circadian rhythm disorder prevents me from EVER experiencing being “tired” and sometimes prevents me from getting so much as a wink of sleep for 72 hours. Add onto these: episodes of seizures that throw me out of bed, pop my neck, and tie me into severe contortions; and humiliating cognitive defects that cause me to not recognize dear friends or places I have visited often. All of which ultimately led me to decide to give up my life as I knew it. I gave up my car keys and secluded myself in the middle of the forest. Because I have learned to recognize the signs of an imminent full collapse and slow down, those have not occurred in some time. However, episodes of collapse/crash /devastating fatigue continue to occur and last for days. To avoid those, I no longer cook or clean the house. Tidying the kitchen or minimal shopping will end in dripping wet hair, the scary respiratory thing, and stumbling to recline for an hour. The air conditioner is set at 66 degrees, while I sit barefoot in summer clothes in front of an industrial blowing fan and mini fan next to me for spot cooling.
Because my neck is a train-wreck, I am scheduled to have cervical surgery soon, which my brilliant son, a doctor, assures me will alleviate many symptoms. I pray one of the ones that goes away is the weekly migraine, the inconvenient sweating and the need to continuously say, “I promise I’m not drunk” (especially on Sunday mornings at church). However, I know some will not go away, since the symptoms are commonly known to be the result of irritation of the Central Nervous System, and dysfunction of the parasympathetic, autonomic system, caused by HHV6, ME/CFS, Fibromyalgia, Sjogren’s, Chronic Lyme Disease, Rheumatoid Arthritis and degenerative disk disease. Thank you for allowing me to share some of the chronic and disturbing experiences from my 5 year journey with a long list of invisible illnesses which remain unsolved and thus unrecognized by the medical community, and for which there is no treatment protocol or cure.