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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