Saturday, 16 August 2014

#25 The Changing Course of my Disease

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.

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