Category Archives: Change

A lot can happen in a year…

One crazy year

It’s been a BIG year!

The highlights:

  1. I ended a relationship, and rekindled another
  2. I totaled my car (Thank God nobody was hurt…except the poor deer RIP)
  3. I bought a new car
  4. I moved
  5. I started a new job
  6. I lost and then gained 10 pounds
  7. I reduced my hours at work
  8. I lost the ability to write by hand
  9. I got married(!)
  10. I learned to write by hand in a different way

It is now widely accepted that chronic stress  can lead to, and exacerbate illness. The year preceding my diagnosis of  CIDP, was arguably the most stressful of my life up to that point.  I am conscious that stress (even happy stress) effects my health.  It effects my function, as well as my energy level.  Naturally a “high strung” person, it’s a battle I am always fighting with myself.  I am proud to say that years of chronic illness coupled with unexpected twists and turns in my life, have lead me to a much more “zen” place.  I’ve gotten here because I had to…one might say “chill out, or die”, and it will ALWAYS be a work in progress for me.

As 2015 draws to a close and there looks to be calmer seas on the horizon, I am taking some time to look back, but also ahead to what I want for 2016.  I survived, and more importantly (mostly) enjoyed this year.  It no doubt had an impact on my health, and has left me with an energy and functional deficit I’m working to get back to black.  But it was totally worth it. I could try to live in a bubble, where I resist change.  But then again, it’s stressful to avoid stress…and where’s the fun in that?!

This year, the changes I made were out of necessity. The things I did, were largely to keep my head above water. Next year, I hope that I can make more changes by choice, and spend some time working towards becoming even more myself. That includes sharing more of my journey here with you. The wins, the losses, the mundane, and the significant.

Stay tuned and learn with me, while I investigate assistive devices, and technology; interact with physical and occupational therapists, nurses and physicians; increase, decrease, and try new drugs; work more, work less, and maneuver through everyday life, and relationships, with a chronic illness.


MY new year’s resolution

pencil tips

Source: “pencil tips” posted by Dvortygirl is licensed under CC BY-SA 2.0

“I have a penchant for fresh notebooks and mechanical pencils. It seems every time I go to the store, I buy a new notebook.  I have dozens of them just sitting around.” – Richard Paul Evans

It’s already cooling off here.  Summer is winding down.  There are back to school sales everywhere, and even Halloween candy in the stores.

Invariably, almost 10 years after graduating from university I find myself feeling restless, like I should be packing, or moving, or shopping, or stressing.  I long for fresh notebooks, sharp pencils (I’m showing my age), and the promise of new adventures, and challenges.

When people talk about the start of a new year, I immediately think of the school year.  Christmas and New Year’s has always just felt like a way to break up the long winter to me.

Now that I am no longer in school, and have no children in the house that I’m focused on preparing, it’s no surprise that my mind turns to the list of changes I want to make in my life, and the skills I want to develop, the things I want to learn.

Some years it has been professional development;  a correspondence course that I think might help me to develop my career, or to fend off boredom from the job I have right now, performing similar tasks day in and day out.  Other years, I’ve endeavoured to get out more and meet new people, joining meet-up groups with others sharing similar interests.  One year, I started volunteering, another I decided that I wanted to become more active in the CIDP/GBS community.

No doubt that this list could prompt a whole other series of posts post about commitment, and follow through.  But let’s save that for another day, shall we?

 

Source: "Farmer's market, Jul 2009 - 01" posted by Ed Yourdon is licensed under CC BY-NC-SA 2.0.

Source: “Farmer’s market, Jul 2009 – 01” posted by Ed Yourdon is licensed under CC BY-NC-SA 2.0.

More often than not at this time of year, the first thing that pops into my head, is my health.  Right now is a great time for farmer’s markets, and locally grown food.  When I see the beautiful colours, and taste the cucumbers, squash, tomatoes, and beans that my friends graciously share from their gardens, I start to seriously wonder about the stuff I’m eating the rest of the year, and the stuff I’m eating in general.

I have no doubt, that food can be medicine.  This is not to say, that if one gets a sinus infection that they should not see a physician.  I take prednisone every single day, because if I don’t, I lose the ability to feel my extremities, and the strength to stand, walk, dress, and cut my own food.  But as someone with a chronic illness, who has tinkered, and tried a multitude of things natural and chemical in the quest for health and function, I KNOW that the way that I eat affects me.

Sugar, and processed foods in general, sap me of my energy and leave me feeling sluggish and bloated.  In the last few years, I’ve also experienced a change in my digestive system.  I was always able to eat anything I wanted, with very little consequence, now, perhaps as a result of a confluence of factors including the prednisone, it seems that everything upsets my delicate system.

I have tried three times to drastically change my eating habits.  Every time to varying degrees of success.  Historically, I’ve tried to cut sugar, and gluten, and stuck to whole foods with few ingredients.  In the 10 years since falling ill, I have improved my eating exponentially.  I read labels, look for ingredients I can’t pronounce, and try to choose whole, if not always organic, foods.  I try to choose the salad over fries, and water over soda, but I’m not as rigorous, or careful as I should be.  Growing up in a house where cheese whiz was a breakfast food (mmmm…cheese whiz), and living on cafeteria muffins and coffee through most of university, I had a ways to come.  I have a ferocious sweet tooth, and have struggled with candida for most of the last decade (f*ck thank you prednisone).  I’ve never met a baked good I didn’t appreciate.  I love food, but I’m also an emotional eater.  I eat to cheer myself up, I eat when I’m happy, to celebrate.  Eating is something I do with my friends, and I’ve realized that most of my social interactions involve food and drink.

When I look at it objectively, I am lucky that I am not heavier than I am.  But, I am the heaviest that I have ever been with 160 Ibs, on my 5’5″ frame.  My self-esteem is at an all time low (despite a bra that’s a full cup size larger!).  My motivation until now has always been my health,  consequently to the changes in diet to healthier choices I would lose weight, but then would also gain it back and then some when my eating would again go off the rails.

So, as the weather gets colder, work gets busier, and the city fills again with skinny, young, healthy university students, I can hear the fresh produce telling me to eat better and my skinny jeans yelling at me to get my ass in gear.

I’m trying this autumn to cut down on the sugar and gluten/wheat I consume.  I will avoid salt, and preservatives, and try to eat fresh, whole, and organic where I can.  I will drink more water, and tea to fend off the hunger the prednisone inspires, and I will be gentle with myself, but decided with my approach to food.

My motivation is still improved overall health, but this time it’s also weight loss.  Will this make it stick?  Will vanity be the impetus I need to effectuate long-term change?  I guess we’ll see.  But it can’t hurt.


Brace yourself…

Roosevelt is said to have had GBS, NOT polio as originally presumed. Source: 'NY - Hyde Park: Franklin D. Roosevelt Presidential Library - Leg braces" posted by Wally Gobetz is licensed under CC BY-NC-ND 2.0

Roosevelt is said to have had GBS, NOT polio as originally presumed. Source: “NY – Hyde Park: Franklin D. Roosevelt Presidential Library – Leg braces” posted by Wally Gobetz is licensed under CC BY-NC-ND 2.0

AFOs Part 2: She has no legs!

In AFOs Part 1 I brought you up to speed on the when, why and how I got my first pair of AFOs. I told you about my struggles wearing them. I rationalized why I didn’t wear them and I set up the situation I now find myself in.

When boyfriend and I broke up in January of this year, I was tired, unhappy, and 20Ibs heavier than when we started dating. I had sunk all of my energy into the relationship and was feeling depleted. I was falling into a depression; I hadn’t yet recognized.

In April, I moved into my new place and took the first two months month to wallow. I slept, I laid around, I watched TV, I fed my Pinterest addiction, I rearranged my closets, I ate takeout and I avoided most social situations. I showered, walked the pup, and I made it into work, but most of the time I was just tired, often I was sad.

I was sad for all of the obvious reasons – I was single AGAIN at 33, I had lost a perfectly lovely single girl space in my previous apartment. I had let some friendships fizzle and more recently some had imploded. I wasn’t feeling fulfilled in my job, I felt fat and unhealthy…and fat. I wasn’t sure how to get moving, how to lose the weight, how to feel healthier through exercise…AND I would never run the Ottawa marathon…

I’ve always struggled to get enough aerobic activity for weight loss, and cardiovascular health. My balance and gait mean I move deliberately, and my loss of strength and slow healing mean that I have to be very careful not to tax my muscles too much.

All the while, my AFOs sat comfortably in one of my rearranged closets.

"Amy Purdy - Pop Tech 2012 - Camden Maine USA" posted by PopTech licensed by CC BY-SA 2.0

Amy Purdy kicked a** on DWTS! Source:”Amy Purdy – Pop Tech 2012 – Camden Maine USA” posted by PopTech licensed by CC BY-SA 2.0

One random evening, there was nothing on television. Like nothing, nothing. So I turned on Dancing with the Stars (DWTS). You know, that American dance competition where contestant couples consist of a celebrity paired with a professional dancer? In the spring of 2014, one of the contestants was Amy Purdy, a Paralympic Bronze Medalist in snowboarding. Purdy lost both of her legs at the age of 19, to bacterial meningitis. I watched as she flew around the floor on legs especially fabricated for her to dance. They were sleek. She was graceful. She was beautiful, and looked pretty much the furthest from disabled that I could imagine.

And then it hit me!! What if I had my legs amputated below the knees? Foot drop, gone. Muscle weakness in my lower legs – buh bye! You can’t roll ankles you don’t have, right?! You can’t trip over feet that aren’t there. How could I ever sell this to my doctor? What was the recovery time?   I was genuinely excited! I knew that there was a greater disease process at play in my body, but I also knew that the majority of my weakness was in my furthest extremities – so my hands, and my legs below the knee.

And then it happened.   (Sound of screeching tires) I had an out-of-body experience. I was watching myself sitting in my living room, SERIOUSLY consider having MY LEGS AMPUTATED. Now, I’ll give you a moment to let that sink in – the absurdity of that scenario.

It took a couple of seconds, but I finally realized how crazy I sounded. My next though was there has GOT to be a better solution than the AFOs I have now. If I am seriously considering CUTTING OFF my legs, there is a problem. No rational human being, has these thoughts, right? How can Purdy compete in a dance competition (and come second) but I can’t walk my dog in an energetic, safe, comfortable and somewhat fashionable way?   This can’t be. This is ridiculous. It’s 2014! I was incensed!!

I should add a caveat here: I had seen orthotists in the decade since my diagnosis. Just to pick their brains, and to see if the technology around AFOs had advanced in any way. Every time, I was assured that it had not. My ugly, uncomfortable, plastic AFOs were the best there was I was told, and nobody seemed particularly interested in finding something better if it did exist.

In those moments after my DWTS epiphany I decided that status quo was no longer acceptable. A double amputee can compete, and almost win a dance competition. I can find something better, somewhere. And so, I called my mom (obviously) and told her about my new resolve. Knowing the drill, I emailed my neuro to get a prescription for new AFOs, and just like that so began the search, and hopefully my resolve to find a solution that works for me.


Run! Forrest! Run!

Runners Converge Large

Runners Converge on the Gallery” posted by ActiveSteve is licensed under CC BY 2.0.

“It’s never too late to be what you might have been.” – George Eliot

This weekend was Race Weekend in Ottawa. Every year, runners from around the world converge on the city for two days of competition in May. Registration always sells out while there’s still snow on the ground, and more than 46,000 people participate in the races that start Saturday morning and wrap up Sunday afternoon with the marathon.

Ottawa is full of runners – the culture is alive and thriving. The Running Room does well here, and across the city, people talk about what run or marathon they’re training for, why they’re running and how much they really need to run. I’ve seen girlfriends shed pounds, find peace of mind in hectic lives, and gain confidence by running, and I know it’s a positive activity for many around me.

Most of the time when I stumble into a conversation with a convert runner, I smile and nod and compliment their dedication. But every year around this time I feel a twinge of jealousy as the weather gets nice, and the Rideau Canal pathways start to get congested with spandex clad, water bottle carrying, stop watch toting runners. I pass them on my drive to work in the morning, and then again in the afternoon on my commute home. They run in the evening, and there are always a few out late at night. The running talk starts at work, on twitter and Facebook, and at social events. I continue to nod politely in conversation and gently try to change the subject.

I can’t run. Walking is really quite an accomplishment some days. If I could run, would I? I don’t know. But I resent that I can’t.

I wasn’t diagnosed with CIDP until I was 24 years old. Doctors speculate about a missed diagnosis when I was 12, and wonder if my condition went untreated for more than a decade. *More on that another day*

Through my teen and young adult years, I was moody, and skinny and a little melancholy. I was a klutz, kind of awkward and not into sports. I was one of those girls that wanted to work on the yearbook, so I could get out of gym class.

I didn’t exercise apart from walking (as pre-teens/teens do, because they don’t yet drive) and I just wasn’t very physically active. This was always attributed (even by me) to my countenance and not my physical condition. I didn’t do these things, because I didn’t want to.

The question I often ask now is: Is that true? Did I opt out of physical activities because I was moody and sullen, or did I opt out because I was weak, uncoordinated and tired, which contributed to my moody or sullen disposition and in turn caused my “I don’t want to” attitude, instead of coping out with an “I can’t”? The truth is, probably a little bit of both I suspect.

The logical next question for me becomes: Who would I have been if I hadn’t fallen ill? This sort of navel gazing is reserved for platforms such as this blog and I try not to spend too much time in the past. What’s done is done. No mashing of teeth, wringing of hands, or sleepless nights are going to change what is. But to ignore any potential correlation between who I wanted to be, my physical condition, and who I have become doesn’t seem to work for me either.

Because of this, I unpack these questions for a while and toss them around. I try to find something useful out of the pursuit, something I can learn about myself, and then I pack them back up and carry on. Sometimes I find it cathartic, and sometimes I find it depressing.

Maybe I wanted to be a track and field star? An Olympic swimmer? A dance teacher? Maybe I would have been a wood worker, or a mechanic? I’ve often thought that I’m most happy when I’m creating something or fixing something with me hands – such as they are.

Now don’t get me wrong, I understand that even fully able bodies aren’t able to will themselves into being sport stars. But baby, maybe “I coulda been a contender”.

More in the realm of possibility, I would have the opportunity now, as my peers do, to “take up” running, or mountain climbing, or knitting, or …welding! More recently, I have become acutely aware of the things that I cannot do. It’s been hard for me to realize that there are things that I would in fact, like to do, but can’t.

I’ve used “I don’t want to” as armour against the disappointment of “I can’t”, or more accurately “I’m scared I won’t be able to”.

It’s been even more difficult for me to either accept that there are things in this category that I will never do, or to work up the courage and energy to advocate for myself and to find ways that I can.

I’ve tried to adopt the position that I should do what I can with what I have. Grow where I’m planted, and any other of those appropriate platitudes. But, I’m afraid that I may have actually adopted the settle for the way things are mentality. The stay alive but maybe not thrive attitude. And that’s not working.

It’s time to again start trying things I want to do, even if I’m afraid that I won’t be able to do them. It’s time to admit that I want to, but don’t know if I can. It’s time to start investigating workarounds for the things I want to do, not just the things I need to do day to day. It’s time to start living and not just existing.

The first step is realizing there’s a problem. On to the next…


Breakdown, or breakthrough?

A ‘little’ update, since December. When I last wrote, I expressed my general malaise, and my fear of change. A shock to nobody maybe that I have again been MIA.   I say, when life hands you lemons (in the form of a failed relationship), stick your head in the sand!

In the time since my last post, an important relationship ended and lots of change has come my way.   I moved out of the apartment I was sharing with my partner, and into a place on my own.   It’s again, my part time pup, and me.

And guess what? I am happy to be living alone again.

Before you sigh deeply as I usually do, whenever a single girl proclaims to the world how “truly happy she is being alone!” I am conscious of the fact that I don’t want to be alone, or single forever. I am also conscious of the fact that it’s pretty likely that I won’t be.

I do wake up some Sunday mornings and wish that I had a man to go for coffee with, and I do miss the default Friday night plans that come with a relationship. I hate the grocery store when I’m single, and I miss knowing whom I’m bringing to breakfast, or that wedding in July. When I’m down, I obsess over the loneliness that I feel, and therefor project into the future. But, I know myself well enough to know that these thoughts and feelings, and fears are normal for me after a break-up.

I am sad that the relationship ended, I am sad that at this time last year there was talk of babies, and houses, and marriage, oh my. I’m sad that I’m 33 and single again. But I am also thrilled to be living in my own space, where the television can be on whatever channel, I want. Where I feel no shame for my genuine appreciation of Grey’s Anatomy. Where I can have crackers and cheese, and tea, for dinner. Where I can sit on the couch all day, or decide on a whim that I am leaving town, or just going to the mall.

I enjoy these things. And for now, I’m choosing to bathe in this ability to do whatever, whenever I want – pretty much.  I am also choosing to be thankful for the end of a relationship that wasn’t bad, or abusive, or terrible in any way, but that wasn’t letting either of us be us. And I am thankful for a breather.

This may be obvious post break-up psychosis, I’m open to that possibility, but for me it’s worth noting that after previous break-ups I couldn’t wait to dive into the next thing. READ: Next relationship. I couldn’t be alone, often dragging the ghost of boyfriends past into the relationship that followed. I guess all I can say is that this time; this way feels like a better way to go.

I have been pointed again towards changes I want to make, and patterns I need to break, and as has been the theme throughout my adult life, I’m blessed to have the time, space, and support I need to get back on my feet.

“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.” -Socrates


It was the best of times, it was the worst of times…

“Insanity:  Doing the same thing over and over again, and expecting different results” -Albert Einstein

I heard this quote for the first time in high school.  I remember the first time my father said it.  He had picked it up from a self-help book he was reading and it seemed so timely, so obvious, and so true.  He said it with such conviction and gusto that no doubt the delivery helped with my affection for the sentiment.

As the years have passed, I seem to always come back to it.  Whenever I am unhappy in a relationship, a job, or frustrated with the limitations of my health and body, at some point I become conscious of the fact that I am repeating a thought, a behaviour, a pathology.  Sometimes, it’s enough to snap me out of it, but more often, it’s not.

I hate change.  I hate change, until it is thrust upon me and then I almost always flourish and grow better from it.  Rationally, I know this.  And yet, every time a new transition is upon me, I struggle against and through it.  Plenty about this later, I’m sure.

Well it’s time for some change.  I’m unhappy.  Not, up at 3 am in a cold sweat unable to face tomorrow unhappy (I have been there) but quiet, crippling, stagnant, “well things could be worse”…but they could be better, unhappy.  I have been for a while.  Unfulfilled in my job, anxious about relationships, concerned, but acrimonious about my health, I have been living with “well, but at least I can walk today,” as a reason that I should be able to find happiness and fulfillment with the current state of my life.

It’s not working.  True, I can walk today.  I showered, and dressed myself, stopped for coffee on my way to the office, made it safe and sound and warm to my desk despite -30 degree weather.  Things, I could not have done in 2004.  And these things do feel like gifts.  I am blessed, for these as well as many other reasons.  But just because I feel I “should” be happy, is not proving to mean that I am in fact, happy.

And as the New Year approaches, now seems like a good time for beginnings.  I am not making resolutions, but am choosing to use this time as a time for some change.   They may be little…at first, and I know they’ll be some kicking and screaming, and some procrastination and woe.  But let’s just say that will make it interesting, and no doubt at time entertaining – here we go!

Tis the season for reflection, expectation and hope...and maybe a little peace and joy too.

Tis the season for reflection, expectation and hope…and maybe a little peace and joy too.