My 11 years with Multiple Sclerosis

In March 2003, I was diagnosed with Multiple Sclerosis. I was 28 years old. I had just graduated from Naturopathic College and had started my residency.  Within a span of a week, I lost all feeling in my left leg and my right foot.  I needed a cane to walk around.  I would make it to work, my boss would take one look at me and send me straight home. I would stop in the middle of a grocery store and crouch low to deal with the pain from muscle spasms. Then, several weeks later, I started to have double vision.

I remember waking up the day after my diagnosis. Swinging my legs over the side of the bed, burying my head in my hands and sobbing.  I was so afraid.

I remember telling my husband it was okay if he wanted to leave me.  We had been married 3 short years and just moved into our first home.  I told him he didn’t have to take the whole “in sickness and in health” seriously.  I understood if he didn’t want to stick around and watch me potentially lose my mobility, my sight and other pieces of myself to a disease that was ravaging my brain. He didn’t leave. He cried instead.

I remember the panic that set in when the doctors told me my prognosis was bad.  That my MRI results were worse than they had anticipated and it was best if I started aggressive treatment as soon as possible.

But I couldn’t.  I wanted children.  I couldn’t take the drugs and still try to conceive.  Besides, I was a naturopath remember?  There had to be another way.

The doctors told me to “Hurry up and go have your kids so we can start treatment”.  Well, as luck would have it, that didn’t happen either.  It took me 3 years to finally get pregnant with the help of in vitro fertilization.  Remarkably, I was in remission for those three years.  I never relapsed.

I have never relapsed again. I have been close. This month I was scarily close. I lost feeling in my left leg again. Started tripping up the stairs again and had to be extra cautious walking and exercising, but I have recovered for the most part.

To be clear, I never fully recovered from the first episode but I did remarkably well.  If you look at me, you would never be able to tell that on any given day the amount of feeling I have in my left leg varies like the weather. At night, in the comfort of my home, I stop compensating.  My husband will see me limp.  My boys will ask why I am walking funny.  If I haven’t slept, or if I have been overly stressed, my eyes let me know.  The tell-tale double vision returns whenever I look left. Not for long, just long enough to let me know it’s time to slow down.

But 11 years after diagnosis, I am not afraid of losing my mobility.  I am not afraid of losing my sight.  I am not afraid of this disease.

In fact, most times, I consider it a blessing in disguise.

The diagnosis 11 years ago, which incidentally has not been confirmed since I never had a second episode that lasted long enough, changed my life for the better.  I don’t take my mobility for granted.  I don’t take my sight for granted.  I don’t take my life for granted.

The disease has taught me to listen to the whispers of my body.  Sleep when I have been pushing too hard.  Take a breath when the stress is too much.  Eat well. Exercise regularly. Choose friends wisely. Avoid drama.

This is good advice generally. We should all do this. But my type A personality never knew when to quit before the illness and truth be told, I still have trouble stepping on the brakes, but MS has made me try harder to strive for balance.  Those close to me may argue that I am still failing miserably at trying to balance my life, but they didn’t know me before I got diagnosed.  This is an improvement.

When I see patients in the clinic that have been told their test results are positive, that their prognosis is poor or that the odds are not in their favor, I want to scream at them to ignore all of it. We are more than test results, more than statistics, more than data points to plot on a graph.  We are individuals with challenges.  We don’t have to let those challenges define our lives.

MS reinforced to me that people are more than the sum of their parts.  There is a whole other part of us that science and medicine can’t figure out. For all intents and purposes, I should be in a wheelchair.   I should be heavily medicated.  I should be sicker than I am.

But I’m not.  I am fine.  I am healthy. I am happy but most importantly, I am more than an MRI.

 

How Hockey Camp Almost Killed Me and Other Tales from our March Break Madness.

These past two weeks, my children have been on March Break. I had this vision of March Break similar to how I have envisioned Summer breaks, Christmas breaks and March breaks of the past.  In my vision, I am free of being the chauffeur.  Instead, I sit in my pajamas at the kitchen table, drink tea, get lots of work done, catch up on my paperwork and the boys play and keep themselves occupied. 

 You would think that I would have learned by now that this is not how it tends to unfold.

 This March Break, I also planned on renovating my clinic, organizing my tax documents and working on my next habit: decluttering my inbox.  I managed to get the clinic renovated.  The rest remained pretty much untouched as I am lying in bed Sunday night, trying to recover from what was undoubtedly the roughest March Break I have ever been through.

 You see, my husband and I had this great idea.  We would put the boys in hockey camp in Waterloo for the first week of March Break.  The boys would be happy, I would get to work and my husband would book some work travel while the boys and I stayed with my dad. 

 Neither of us realized how wrong we were going to be.

You see, hockey camp is BRUTAL.  I don’t know how hockey parents do it.  Getting the boys fed, packing their bags then driving to the other side of town to get them on the rink by 8:30 for 5 days in a row literally almost killed me.  They are only 6 and 8 so I needed to help them get all their equipment on and then tighten their skates.  The one thing I will never be able to do is tighten skates.  Although they loved every minute of the camp, by the end of the week, I felt closer to a full blown neurological relapse than I have in the last 11 years. 

 It took me the weekend to recover and then it was time for the clinic renovation.  It wasn’t a big job but considering my clinic consists of mostly women, it took considerable muscle and strain to get the job done. 

 In the meantime, my dad and brother were helping with the kids.  I appreciate their help immensely.  They adore the boys and the boys adore them.  They mean well, but my dad’s idea of childcare is McDonald’s and Bulk Barn while my brother believes Tim Horton’s is a perfectly reasonable place to have breakfast. Combined, they turned my generally healthy, well fed, well-rested children into sugar crazed, sleep-deprived animals.  I wanted to run away from them. 

Meanwhile, my kitchen was being renovated while I was away.  Icing on the cake.   I came home to a dust covered, cluttered disaster of a home Friday night and spent all day Saturday washing every dish I own and then organizing the whole space.

So now I lay here on Sunday night, two well-fed boys in bed, a brand new beautiful kitchen downstairs and a newly renovated clinic space waiting for me tomorrow.  It turns out it was a pretty productive March Break after all but I am still very excited that tomorrow is Monday, the boys go back to school and I go back to work for a rest and maybe, just maybe, I will be able to put a dent in my inundated inbox.   

 

 

To Weigh or Not to Weigh-My Battle with the Scale.

Ever since I can remember, I have wanted to be thinner.  I was never thin.  Not even as a young child.  Like many women, I have focused on the negatives of my body.  I have longed to be rid of the pear shape that I have been destined to live my life in.  My attitude towards my body is unhealthy and the constant pursuit of losing 10 pounds is exhausting. 

And the irony is that I help people lose weight.  I teach people to eat well, to focus on choosing healthy foods when they are hungry and tell them that if they do this, the scale will take care of itself. 

Yet, I still long for the number on my scale to go down despite the fact that I know I am a healthy weight, active and fit.   It makes no sense.  I have been the same size, give or take 10 pounds throughout fertility treatments, stress and holidays for as long as I can remember.  I gained 50 pounds with each of my pregnancies, managed to lose it both times and can still fit into my wedding dress, 14 years and 2 kids later.  By all accounts, I am doing pretty well.  I eat very well.  I am fitter than I have ever been and stronger than I ever imagined.  I ran a half marathon at 35 when the doctors were pretty sure I was going to have difficulty walking on my 40th birthday. 

Several years ago I started training with a personal trainer and it changed the way I look at exercise.  I realize that exercise helps my mood and it helps me maintain my balance and strength so I can stay well, stay mobile and fight my illness with all I’ve got.

And still, despite all my body has done and all the odds it has defied, I want to be thinner.

Last week, I wrote about how I wanted to focus on stretching.   The reality is, I want to do more than that.  I want to focus on making my body the best it can be, regardless of the number on the scale.  This is going to be significantly more difficult than just stretching 10 minutes a day but I am committed.  I do not want to go into my 40’s continuing to loathe my hips and thighs. 

And luckily, I found someone that has been helping me confront this. 

In January 2012 I moved to Toronto.  Finally in March, I walked the two blocks to the gym and found a new trainer.  He is awesome.  He is my unwilling confidante and counselor.  No nonsense and no bull but full of insight at the ripe old age of 23.  He is mature beyond his years and never ceases to amaze me with his wisdom. 

Over the last 2 years, he has pushed me and transformed the way I view working out.  Of course, he would really love it if my life didn’t get in the way of my sessions with him but despite my challenges at fitting him in regularly, he works with me and supports me. 

He doesn’t let me get away with anything yet at the same time, he encourages me and has helped me see myself for the strong, fit person I am, and not just the number I long to see on the scale.  Don’t get me wrong.  He would love it if I lost the 10 pounds.  I imagine it gets frustrating to have a client that is so close to reaching her goal and yet the goal always eludes her.

One day, after a particularly grueling workout, I said to him “Not bad for a girl who’s almost 40 and has a neurological illness”.  He countered with “Not bad for a girl-period”.  I was a little stunned.  He was right.  I was short changing myself.  His comment was an eye-opener.  I can do push-ups (the real ones!) and plank, lunges and squats, intervals at 9.5mph and I have more stamina than ever.  

But my weight is the same-give or take a few pounds.

So I am going to stop weighing myself.  Not forever, but for a month.  I will continue to focus on eating well, exercising and stretching, but I will not let the scale be my motivator.   I want to focus on all that my body can do, and appreciate that the hips I have loathed, helped me deliver my 2 boys naturally.  That the thighs I wished would shrink still support me, and allow me mobility that I wasn’t sure I would have at this point in my life. 

Self acceptance is hard, but constantly fighting who I am and what I look like is harder.  This isn’t a habit that will be easy to track or measure, but hopefully my trainer will keep me honest.  He doesn’t let me get away with much and he reads my blog so I am pretty sure I will be held accountable. 

 There you go Victor-there’s your plug:)Image