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.

 

 

Every Candle Counts…

Today I turn 39.  Every other year, birthdays have been bittersweet.  Another year older meant more wrinkles and even more grey hair.  But this year is different.  This year I am grateful to be celebrating another year.  Thankful for every new wrinkle and every grey hair because each wrinkle and grey hair measures giggles, squeals, smiles and inches in my children that weren’t there the year before.   They represent secrets with my husband and jokes with my brother, meals, laughter, tears and happiness with friends and family that never would have been experienced without growing a year older.

For some time now, I have tried to live my life with gratitude.  To count my blessings and be thankful for all that I have.  But never has that been truer than now.  This year, I am acutely aware of how precarious and unpredictable life can be.  Up until a few months ago, I stressed about normal things-contractors, deadlines, work, chores, kids and countless other mundane things.  Then, in November, my dear friend was diagnosed with ovarian cancer.  She is 35 years old.  She has a 1-year old daughter whose eyes will turn you to mush.  And now, she is fighting the fight of her life.  How does that happen?  How do you go from being healthy, the world at your feet to scheduling chemo and surgery in the matter of hours and days?

And then yesterday, I had a new patient come in.  She is 50 years old.  She has had a neurological disorder for 15 years.  The same one as me.  For 10 of those years, she was well.  She worked, she walked, she mothered.  Just like me. Then, in the past 4 years, her health deteriorated.  She can now barely walk or talk.  I looked at this patient and saw my potential future.  That could happen to me.

I think to myself, count your blessings and live in the present.  I have had another year of walking, exercising, working, loving, laughing and playing with the kids.   I try to focus on the positive and continue to be grateful.

But then there are moments when it’s hard to be grateful.  Moments like this afternoon, when I was driving home, thinking about getting the kids to music class and hoping my husband doesn’t forget the cake (more for the kids’ sake than for mine), when it hit me-I miss my mom.  My mother passed away when she was 56 and I was 29.  This is my 10th birthday without her.  There are times like today when I feel her absence so deeply that I can’t breathe.  The sorrow overwhelms me.  It happens at random times.  Sometimes it will be while I am cooking and I think of something she used to say, or sometimes it will be while I am running and I can picture her smile.  She pops into my mind without warning and every time, I am left feeling a tightness in my throat and tears in my eyes.  To this day I can’t speak of her for more than 2 minutes without crying.  I am crying as I type this.  I feel such sadness that she never got to see where life took me, that she never got to meet my boys and most especially, that my boys will never know the love of a doting grandmother.

But then I try to remind myself that this is what life is about.  Life is sweeter when you have experienced death.  Health is more precious when you have faced illness.  Love is greater when you have lost.  The highs are so much higher when you have spent time wallowing in the lows.

So this year, instead of grumbling about getting older, I am thrilled to be celebrating another year lived, another year of health, another year of mothering and another year of endless joy, abundant laughter and immense blessings.  This year, I am putting all 39 candles on my cake to symbolize how much I appreciate every single one of those years, the good ones and the bad.

Happy Birthday to me.

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So another year begins….

Like every other year I have made New Year’s Resolutions for 2014 but this year I am going to pursue them differently.  Instead of making a list and trying to tackle it all at once, I am going to continue to incorporate new habits, as I have been over the past 3 months, in 3-week increments. 

My strategy so far has been quite effective.  I am still brushing my teeth every night, drinking lots of water and avoiding my phone.  My newest habit of trying to stretch everyday didn’t quite work out.  For whatever reason, that has and continues to be a challenge.  I have been stretching more, but not consistently.  I guess that’s better than nothing but my concern is that unless it is a true habit, I will eventually stop doing it. 

As I have been reading more studies and information on habits, I have found that the research is actually showing that the time it takes for an action to become a habit depends on the complexity of it and of course, on the individual.  Though certain easier habits may take 21 days, others may take much longer to develop.  So I am not sure what to do about this one.  Do I keep trying to incorporate it or try again later?  Or move on to another habit and accept defeat? 

I have decided to keep it on the back burner for now, kind of in a holding pattern.  I will still try to stretch more frequently, but I am also going to try to start Hot Yoga again.   A friend of mine asked me about it and I think we will try to go weekly together.  Hopefully the buddy system will help me with this particular challenge.

I haven’t weighed myself either.  It’s been almost a month.  Perhaps avoiding the scale over the holidays wasn’t such a wise idea but I have to say that not being a slave to a number is proving to be quite liberating.  I will weigh myself next week and then I hope to only weigh myself weekly. My hope is that I will view the number that stares back at me with less emotion and angst.  I want to shift my goals away from a number to something else-maybe a long distance run or a certain number of push-ups.

So what to do next?  I have several habits I want to incorporate but seeing as I have spent the last 2 weeks at home getting things somewhat tidied up and organized, I thought maybe I should continue with that. 

I have always found it particularly challenging to stay organized.   I am always losing things-my keys, my wallet, my sweater (I probably have close to 10 black cardigans because I keep misplacing one and then buying another one).  My husband, on the other hand, is very meticulous about putting things away and keeping things uncluttered.  I watch the calmness he exudes and long for it.  I never see him frantically looking for his keys as he leaves the house, or for his favorite pair of shoes as he gets dressed.  I want to be more like that. 

So, I am going to take 10 minutes every day to try to put things away.  This means cleaning up my closet, putting my keys where they belong, filing the mail and generally decluttering.  

But I think there is more to being organized than just the act of tidying up.  There has to be a certain consciousness about it.  I watch my husband and how he puts things away with care.  He doesn’t throw his wallet on the kitchen table and then look for it, as it becomes buried under papers and knapsacks.  He makes it a point to put it where it belongs, in the space he has chosen for it.  I want to be like that.  I want it to come naturally. 

I am not sure if I will be able to be as well organized as he is.  He is a different breed than I am.  You know how they say opposites attract?  I think we are the flagship couple for that cliché.  My brain is wired differently than his.  My hope is that I will still be able to change my patterns a little bit by adding some consciousness to my everyday actions.  Afterall, that’s what this whole 20 habits in 60 weeks thing is about right? 

So here I go, into 2014 with my first new habit of the year.  53 weeks and 15 habits left to building my better life by 40.

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

 

Taking Time to Stretch

My newest habit is not so exciting.  I admit it.  But I need to do it.  I need to stretch everyday.  I am a typical type A personality.  I work a lot, I am always doing something and I think most people would describe me as being fairly intense.  I fought this for awhile.  The first time someone called me intense, I was shocked.  In my mind, I was really easy-going.  But over the last couple of years, I have come to terms with it.  I am not so easy-going.  I like things a certain way and I can be fairly demanding.  I like to think of it as part of my appeal although I am sure there are people who would disagree.

My intensity permeates my life. Including how I exercise.  I choose activities like long distance running, at least until I injured myself, step classes, spin classes weights and TRX.  I don’t do Yoga because, well, in my mind, it’s just not intense enough.  I know this isn’t true but I just can’t bring myself to do Yoga regularly.  I thought I could do Hot Yoga since that seemed more intense, but I don’t do that very often either.  I bought a 20 pass package last January with the intent to go every weekend.  I still have several classes left.

But I know I need to change my exercise habits.  As I am getting older, I am in a lot more pain.  I think it is a combination of driving a lot, being fairly high strung and vigorous exercise that leaves me stiff, inflexible and in pain.  So my next habit is to stretch.

I think one of the most important things to do when trying to incorporate changes into your life is to set yourself up for success.  So in my efforts to set myself up for success in this new routine, I am buying an exercise mat today for my bedroom.  I am also going to devise a 10-minute stretch routine that I can do everyday.  I have also given some thought as to when I can do this routine regularly and without excuses and I have come up with the perfect plan.  When I put my 7-year old to bed, he reads for awhile and then I sit in his room while he falls asleep.  I am going to do my stretch routine while he is reading.  It’s perfect.  I usually don’t do anything of consequence during this time anyway so it should work well.

In other news, my teeth are still brushed, I am still drinking water and often, I forget to turn on my smartphone in the morning.  Amazing!  The habits actually are slowly starting to change my life.