Why me?

So why should you want to stick around with me?  

I’m disabled, retired and 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 chronic disease, ME/CFS, a chronic illness, fibromyalgia, and several chronic conditions, such as neuropathic pain. My active diagnoses also include other things most people my age suffer from, like osteoarthritis and hypertension. I’m going to lump all my diagnoses together for the sake of clarity and call it chronic conditions.

On my back porch
On my back porch

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, there is my constant companion, a German Shepherd service dog, The Divine Miss Em. (Apologies and homage to Bette Midler.)

My chronic conditions meant I spent years in bed, sometimes sleeping for 50 hours or more with only bathroom breaks. I once had a Mensa-quality brain, but sometimes I couldn’t do simple math or recall my thoughts or memories. Often, 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. I scoured 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 chronic disease is ME

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 referred to as 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

This last bullet point is what separates ME from CFS. 

How I healed my chronic disease

This chronic disease 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 in my disease. 

Research was the first step. I quickly understood 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. My sourdough starter 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 chronically ill, but I rededicated myself to a regular meditation practice.

Formal nursing education

Think it’s strange a nurse practitioner had to learn about becoming healthy only after getting a chronic disease and being too sick to work? My BSN nursing program incorporated disease prevention, but NPs are primary care providers. We learn how to treat disease and trauma. I worked primarily with chronic disease, chronic illness and chronic conditions in a geriatric and disabled population living 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 quit working near the end of 2008 when mental exhaustion became dangerous to my patients. 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. Almost all my remaining retirement funds were invested in weatherizing, installing new windows, a new furnace, remodeling to be more handicapped accessible and otherwise making improvements. I knew I needed a comfortable home with minimal maintenance because there is no cure for ME.

Goals for this blog 

By writing and publishing this blog, I want to share the things I use to remain as well as I can be with a chronic illness, chronic diseases and chronic conditions. 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.