People, even ones that aren’t related to me, often say thanks for giving them some bit or bits of knowledge they didn’t have before. Others, including relatives, often say, “TMI already! ”
There’s no set agenda for these posts. I plan to review and discuss how I healed myself from a devastating disease that affects my entire body and brain. Along the way, I’ll be sharing things that helped, and hindered, my recovery. Understand, though, that while I talk of being healed and in recovery, I’m still affected every day and night by ME/CFS and other chronic conditions–like supraventricular arrhythmias, neuropathy, Meniere’s Disease, osteoarthritis, fibromyalgia, hypertension and IBS (irritable bowel disease), to name a few.
It’s not a HIPAA violation if you tell people yourself! 😉
So why should you want to stick around with me?
I’m a disabled retiree, age 66, living in gardening zone 4a in northwestern Wisconsin, about 90 minutes south of Lake Superior and 90 minutes east of the Twin Cities. I have a long-suffering husband (50 years together in 2020), a daughter doing public affairs for the Army, two smart and sassy granddaughters and a wonderful son-in-law who graciously puts up with being the only male Army spouse in the room. And, my constant companion, a German Shepherd service dog, The Divine Miss Em. (Apologies and homage to Bette Midler.)
I spent years in bed, sometimes sleeping for 50 hours or more with only bathroom breaks. I once had a Mensa-quality brain, but I couldn’t do simple math or recall my thoughts or memories. I couldn’t retain what I read or find the word I wanted to describe something. I dragged myself around on bone-tired legs with painful muscles and joints for years and years, trying this treatment or those supplements and scouring blogs and medical research publications for anything that could improve my significantly constrained and admittedly lousy existence. The whole time I was attempting to act as “normal” as I could.
My disability is a neuro-immune disease called myalgic encephalomyelitis, ME for short. It still is known in the US as chronic fatigue syndrome. (PwME) people with ME are slowly, and (im)patiently, working to educate that Chronic Fatigue Syndrome (CFS)and ME are different entities. However, you will still often see it called ME/CFS. The major symptoms of ME are:
- profound, zombie-like, down-in-your bones-fatigue that worsens with physical or mental exertion
- joint and muscle pain
- unrefreshing sleep
- relapse lasting days, weeks or even months after exertion
ME forced me to learn how to make myself healthier. After years of simply existing with no hope of a cure, contemplating suicide at times, I realized my entire lifestyle would have to change if I wanted to see any real, long-lasting improvement.
I began to understand how food could both be a cause of my poor health and a help in returning to homeostasis, a neutral balance point. I learned how to be a successful organic gardener, as well as traditional ways of preparing and cooking that improved nutrition, digestion, and assimilation. I used a sourdough starter that originally came with settlers on the Oregon Trail. I mastered how to culture and make cheese, garlic pickles, sauerkraut, kefir, and kombucha. I returned to a regular yoga session, even if it was limited to one pose a day and stretching my muscles in bed. I was a Buddhist before becoming ill, but I rededicated myself to a regular meditation practice.
Think it’s strange a nurse practitioner had to learn about becoming healthy only after getting too sick to work? My BSN nursing program incorporated disease prevention, but NPs are primary care providers. Like doctors, we learn how to treat disease and trauma. I worked primarily with a geriatric and disabled population in nursing homes, hospices, and patients’ homes. Before returning to school in my mid-40s to get a nursing degree, I was an account group supervisor at marketing communications agencies responsible for designing public relations and advertising campaigns for Fortune 500 companies. My career prior to that was a reporter and my first job out of college was show dog kennel manager and trainer.
I was forced to quit working near the end of 2008. With the horrendous drop in the markets during The Great Recession, I lost about two-thirds of my nest egg and ended up underwater on the fixer-upper house I’d recently bought. I invested almost all my remaining retirement funds into weatherizing, installing new windows, a new furnace, remodeling to be more handicapped accessible and otherwise making improvements. I needed a comfortable home with minimal maintenance because there is no cure for ME.
I will bring all the education, skills and life-knowledge I’ve acquired to this blog in the hope that I can make someone else’s path a bit easier.
Is there something I can help you with? Let me know!