In the beginning the doctors called my MS benign. They considered it mild and basically asymptomatic. My neurological tests came back normal, and they didn’t recommend any real treatment.
I was already on an anti-inflammatory for joint pain, and because I was complaining of fatigue, I was put on an antiviral medication thought to be of some help. I couldn’t take the dosage ordered because of the resulting swelling in my feet and legs. That drug was known to be particularly harsh on the kidneys. I stayed on a once a day regimen for years.
The doctors I’d seen were pretty good at avoiding labels. They never once said the words relapsing/remitting, secondary progressive or primary progressive. They seemed to look at my status and deal with whatever it was I presented with.
My disease seemed to change every five years or so. Official diagnosis was in 1996, and in 2001 I was on disability, for cognitive issues more than physical. Things stayed pretty good for the next few years, physically at least. I was still walking without any aids and living independent. The emotional issues of dealing with the sudden loss of my career were a bigger problem. I was depressed, making poor decisions, and living an unhealthy lifestyle. I had not seen the neurologist since I’d left the city in 1999, and was working entirely with my family doctor. I refused the counselling the psychologist that did the cognitive testing recommended.
My symptoms increased and I had another MRI of the brain in 2006. Odd, but as I write this I’m unsure why I had this test, and why I didn’t end up back at the MS Clinic. I know reading the radiologist’s report; I had more than 30 lesions in my brain. Knowing this left me confused and unsure. I started into a few projects that I felt were necessary, as I remember fearing I was going to lose memory, along with other brain functions. This was when I started writing family histories, information I thought the kids might like to read someday, stories that could be lost with my poor memory.
I recognize that a lot of my behaviour was self destructive, and after all those years as a nurse I should have recognized how much trouble I was in, but I didn’t. It was still a pinball kind of existence, rebounding rather than being proactive. I was pretty good at putting up a front for family and friends and suffering when alone.
In 2009 I was still depressed and hit rock bottom. I reconnected with my brother, not so much out of choice but because he’s a stubborn SOB who wouldn’t take no for an answer. I got the help I needed and could finally see some light at the end of the dark tunnel I had been in for so long. I gained a level of contentment, looked up old friends, made new ones where I lived. And I stayed close to my brother with monthly lunches; weather permitting (he’s in the city).
I even joined a Writer’s Club though I hadn’t done any real writing for years other than journaling. I do believe the writing has been a life saver. It forces me to use my brain, like my personal Lumosity game. My memory is better, as is my use of language, and my thinking process. I have more organized thinking, more control over my life than in the last ten years
Wouldn’t you know that just when I was feeling some personal contentment, the physical side of my disease started to act up.