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.   

 

 

My Inundated Inbox

It’s been a while since I provided an update regarding my habits.  That doesn’t mean they aren’t going well.  In fact, for the most part, the habits are firmly established.  In terms of my most recent habit, I learned over the last few weeks that although I won’t stop being a potty mouth completely, I can use my choice words more scarcely and interestingly, they have more effect that way!  I have also allowed myself to swear at the gym.  I wasn’t going to be able to overcome that.  I already owe my trainer over 10 teas so I think I need to get him a Starbucks gift card and accept defeat. But most importantly, I no longer use “bad” words in front of the children.  The boys were very disappointed that they weren’t able to catch me being a potty mouth-not even once.

The other habits are going well too.  I continue to brush my teeth before bed and I have maintained my water intake.  My cell phone usage is still under control-for the most part.  I have not returned to weighing myself daily or even weekly for that matter and I realized the other day, that I can’t remember the last time I ran around the house frantically searching for my keys or wallet.  Overall, I am much calmer with these new habits in place.  So it’s time to add another. 

The next change needs to be timed right.  I need to be able to put in a lot of time at the front end in order to get a grip on this aspect of my life that causes me significant stress.  It has to do with email. 

I am one of those people with an overflowing inbox (over 2400 emails are currently in my inbox).  I can’t handle it.  Every time I login and see all those emails in my inbox, I feel a mild sense of anxiety.  I want to be one of those people who deals with email as it comes in.  Read it, reply to it, file it or delete it.  I don’t want weeks and weeks worth of email in my inbox causing me to panic that I have missed something important.  It gets to a point where it is so overwhelming that I start to feel like it is pointless to try to control it.  But I haven’t given up yet.

I decided that I am going to get a grip on my overflowing email during March Break.  I have some extra time to catch up on this as many of the boys’ activities are on hold and I won’t be commuting as often.  My plan is to clean out my inbox completely and then to allocate some time everyday or at least every other day to catch up on messages.  I have already started unsubscribing to many of the email newsletters and specials that inundate my inbox.  Every time I unsubscribe, I feel a little more in control.  It’s amazing how a small act can give such satisfaction. 

So hear I go.  Three weeks of reading, replying, filing or deleting.