By Allison Jonergin
There are types of exhaustion that are commonplace in the lives of some that I have never experienced. Some parents work long hours and care for young children. Childless, this routine and the accompanying exhaustion is a stranger to me. I’ve seen it, I’ve heard people talk about it, but I’m not getting up in the middle of the night to feed an infant or to change a child’s sheets after an accident.
I have chronic fatigue syndrome (CFS). Since it has been around, it has earned new names like systemic exertion intolerance disease (SEID) and myalgic encephalomyelitis (ME), as researchers’ orbit nears the true cause and nature of this disease. Myalgia refers to muscle pain, while that scary looking word means inflammation of the brain or spinal cord. According to the CDC, it leaves one in four sufferers house- or bed-bound at some point (“What is ME/CFS?” 2018).
The headlining symptoms of CFS/ME are fatigue that inhibits one’s ability to carry out the activities one once could and the worsening of symptoms following activities that push one’s energy envelope. The latter is called post-exertion malaise and happens after physical, mental or emotional activity.
Carrying a few items to the cash register feels like frantically turning over a dead engine. At last it guns forward, only to die moments later. But I’m able to coast a ways, and that’s often how I go about my day. Coasting. Turning over. Dying. A trip to the grocery store is an all-day affair, and I always bring backup. I don’t do the driving or even push the cart if I can get away with it. I lift only half the items onto the conveyor belt, then back into the cart, then into the car, then into the house, then onto the countertops, then into the cupboards. I’m hyper-aware of every movement I make, feeling my energy levels repeatedly pounding into rock bottom until I finally find myself lying down.
I also experience brain fog, headaches, chills, night sweats, joint pain, the need for excessive sleep without feeling rested afterward, insomnia, chemical and food intolerances, tender lymph nodes and the worsening of symptoms upon sitting or standing.
Sometimes my symptoms will worsen right away, like when I need to rest after walking my dog. Other times I’ll take pride in surviving a busy day, only for the aftereffects to hit me like a truck the next morning.
For now, patients can only be diagnosed after a doctor rules out all other possibilities. More research is needed to develop diagnostic tests and treatment options.
Unrest, a documentary that follows a woman with CFS/ME, aims to cultivate more publicity and research funding for this disease. What’s so effectively illustrative about this film is that it follows someone whose only health issue is CFS/ME. I have 13 chronic health issues. So many in fact, I spent an entire blog detailing each of them and still managed to leave one off the list: Sorry, myofascial pain syndrome, I guess I was ready for the time we’ve spent together to come to an end.
To be able to see how this one particular disease affects every area of someone’s life was validating. Don’t let others make you feel shamed when you need to rest and then rest some more. Fatigue is debilitating too.
Unrest. (n.d.) Retrieved from https://www.unrest.film/
What is ME/CFS? 2018, July 12. Retrieved from https://www.cdc.gov/me-cfs/about/index.html
Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.
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