Posts Tagged ‘difficult’

The Little Reminders

Written by on December 17th, 2013 –

I am very open about having multiple sclerosis and about living with a personal disability. During the campus tours I do through my job, I openly talk about being registered as a student with disability through my school’s disability office. When travelling, I have no qualms with talking about the set of needles I have to take with me.

But I’ve been pretty lucky.

Yeah, I’ve had some big relapses—vertigo, loss of appetite, nausea, numbness, weakened vision… the whole nine yards—but for the year and a half since I’ve been diagnosed, there’s only been two weeks where I’ve really had to face my multiple sclerosis head on. The majority of time, I’m a perfectly able person with disability.

There have been some carryovers from my relapses: my balance is a little off, and I notice more of a stutter especially as I get more tired. But besides that, nothing.

I have daily shots I have to take, which can cause a big struggle. The days when I have no symptoms, those shots serve as a reminder that I am living with this. Which is really hard. It’s a reminder of all the uncertainties I live with.

What if today is the day I have another relapse? What if in between my meetings that day, I lose my sense of balance? What if halfway through class, my hand goes numb and I can’t write any notes?

A couple weeks ago, I gave myself my morning shot, and for the first time since I started taking this medication—about a year now—I experienced shortness of breath and anxiety. I’ve read that these are common side effects, but for me, the medicine hasn’t caused any side effects for me besides soreness at the injection shots.

(more…)

So the journey begins… my relationship with Multiple Sclerosis

Written by on March 5th, 2013 – 10 Comments

I always knew that one day I would take care of my parents.  I knew I was part of the ‘sandwich generation’ > folks who would, at some point, take care of both their own children and their parents at the same time.  My mom turned 50 last week… I thought ‘one day’ was 10-15 years away.

The stroke that wasn’t a stroke (not even a TIA) followed by partial paralysis that lasted months;  the loss of function in her hand that eventually came back, months later.  The July morning 2 years ago when she woke up and couldn’t walk.  Except for a brief respite last summer, she hasn’t walked since.

Finally, what we never hoped for

After years of life-changing symptoms… we finally have a diagnosis:  My mother – my beautiful, young, vibrant mother – has Multiple Sclerosis.  She’s never going to walk again.  She’s never going to chase after butterflies with my girls again.  My two youngest will never remember my mom without a walker or a cane.  My oldest asks why her grandma can’t push her on the swings anymore.

I’m angry.  Angry at the doctors that never put 2 & 2 together.  Angry at the genetic makeup that made her susceptible to develop MS.  Angry that she can’t be there for me the way I need her. (more…)

Life is what happens

Written by on November 22nd, 2011 –

“Life is what happens while you’re busy making other plans.” -John Lennon

In 1977, at the age of 19 Canadian hero, Terry Fox was diagnosed with a malignant tumour that resulted in an above the knee amputation of his right leg. As we Canadians all know, that experience fuelled his desire to help others battling the disease. By finding the courage to live his dream, he inspired a nation to lace up their running shoes and fight back against a cancer. While cancer ultimately took his life, he never allowed it to steal his spirit. Cancer was not Terry’s plan A, but his Plan B became a spectacular legacy, that has grown and thrived over the last 30 years, helping millions affected by the disease. (more…)