Category Archives: Chronic illness

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.

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Brace yourself…

AFO’s Part 5: The final frontier?

I LOVE LOVE LOVE the bright colours of the runners right now. Also, a shout out to my friend Janine for

I LOVE LOVE LOVE the bright colours of the runners right now. Also, a shout out to my friend Janine for taking these pics!

Up until this point, I have detailed for you dear readers, my quest to find a new and better AFO. I have shared my reasons for wanting a new brace and communicated my setbacks, frustrations, and failures. This is the fifth and final post in this series devoted to my search.

It became obvious pretty quickly after leaving the Orthotist’s office that I was buying the WalkOn AFO. As I mentioned in my last post on this topic, the WalkOn is not profoundly dissimilar from the rigid plastic AFO, that I was trying to replace but I reasoned pretty quickly that any upgrade was worth it. The difference in weight of the brace alone, I deduced would be worth the cost.

The other important differences between my old AFO and the WalkOn include:

  • The thinner foot bed fits into a shoe that is a medium width.
  • The rigid support doesn’t come up the back of my heel so there is no extra length required in the shoe.
  • The rigid support doesn’t directly make contact with my leg, other than where it fastens below the knee, meaning they will be less warm, and hopefully more comfortable.

Other factors in my quick decision: I was almost certain that my insurance (through work) would cover 80% of the $2500 price tag (slightly less than the $3000 I was anticipating). I also knew that I had the wonderful support of my parents, who would be able and willing to help me with the cost. For all of these reasons, I thought “what do I have to lose?”

I quickly consulted “my people”, and submitted the requisite insurance forms.

Two weeks passed and I went in to have these new AFOs fitted.

I was eager to try them out!

There were moments of frustration at the fitting, which were nobody’s fault. One of the problems with neuropathies is that nerves are “weird” – scientifically speaking. Pain, pressure, or discomfort is often referred to different places. So pressure on one spot of my foot is not felt at that spot, but in a whole other area. This meant that I have a really difficult time telling the Orthotist where the WalkOn was rubbing, and in turn, he had a very hard time guessing how to fix it. We both did our best, and he again offered assurances that I could come back if I had any problems.

Check it out, I almost look sporty!

Check it out, I almost look sporty!

Fast forward four weeks, and I now have a more informed review of the WalkOn AFO.

A quick note, this is MY review. I am sharing it in the hopes that others can use the information to make an informed decision, if and when they consider bracing options.

The Pros:

  • The WalkOn AFO is indeed more comfortable than my previous rigid plastic AFO.
  • It is lighter. Much lighter. The lighter weight helps reduce fatigue, so I am able to walk for longer periods of time, more comfortably. I am able to walk much faster (obviously) than without any AFO (duh!) and maybe a little bit quicker than with the rigid plastic ones.
  • The rigid support not making direct contact with my calf is great. It definitely makes them less warm, and therefore more comfortable.
  • It is much easier to get my foot into my shoe with the WalkOn since it doesn’t come up behind the heel. This cuts down the time and effort it takes me to get into them.
  • It fits into my size 7.5, medium width shoe.
  • Like my rigid plastic AFO, from the front, the WalkOn is not visible.

The Cons:

  • I haven’t been able to fit an insole into my shoe, on top of the AFO foot bed to act as a cushion. An insole is suggested by Ottobock, but there is no room (height) in my shoe. Also, my toes/feet curl into uncomfortable positions when I have tried an insole. They slide in MUCH easier without. However, this means that my foot is directly on the hard carbon fiber foot bed. This was the case with the rigid plastic AFO, so while it’s not really worse, it’s no better either. On this note, I find it uncomfortable if I’m doing a lot of standing, and it aggravates an ache I have from an old break in my foot that would have been prevented if I had been wearing an AFO, and probably not talking on my cell phone, while walking.
  • The brace has given me a blister where it comes around the inside of my foot. But only on the right foot, incidentally. I have MacGyver’d a solution that involves a store-bought gel pad used for high heels(!) while it heals, but I’m not sure how I’m going to manage this over the long-term. I returned to the Orthotist and he fastened plastic cushioning to the area that was rubbing, but it only seemed to rub more. I should probably may make another appointment.
  • The cuff that fastens below the knee is quite bulky, and I am anticipating a bit of a challenge fitting it under long pants.

The verdict:

Like button

Although I am struggling a bit with the blister, I am pleased with my purchase. The lighter weight of the carbon fiber, and the cooler fit in the summer months have made it worth it. I am also pleased with the overall look of the WalkOn. I have had a few of the “peeps” mention that they look more “new age” and “techy” and less “medical” or “old”.

Score one for vanity!

Finally, I feel that I must spend a minute ranting about discussing the price point. At $2500, this was not a “thrifty” purchase. The Assistive Devices Program (ADP) here in Ontario, does not presently cover any of the cost of a carbon fiber AFO like the Walk On. ADP will subsidize the cost of the rigid plastic AFO however. For some, this isn’t a decision they can make – the rigid plastic AFO is their only option. I am fortunate to have benefits through work that did in fact cover 80% of the cost of the WalkOn. This still left a $500 out-of-pocket cost but I was able to afford it. I mention this because I think it really is a shame that there is no available public funding (that I know of) for a solution other than the very base option. I can guarantee that these new AFOs have made me more active, and consequently maybe more able, than my previous ones. This may very well in some way lessen the public health care I need, and increase my productivity, participation and contribution to society.

*end of rant*

No doubt, I will write posts in the future about self-esteem and body image, and how having an assistive device like an AFO/brace/cane/walker affects who we are, how other people see us, and how we see ourselves, but I feel like this series on this aspect of the journey has been a worthwhile exercise for me and I hope others.

I made a decision to try for something better. I faced some difficult, demoralizing situations, and I learned about myself and my illness. I’m happier, and more active in the end, and while it may not be the perfect solution I was hoping for it was worth it.

Success!

A quick final thought: I’d love to hear from anyone who has faced a similar challenge generally, and specifically regarding an AFO. This exercise (further) demonstrated to me the need for resources and firsthand accounts such as these, and also a constructive discussion around accessibility and support. Let me know what you think.


Brace yourself…

Source: "quote for stephyk." was posted by @aerial_m under CC BY-NC-ND 2.0

Source: “quote for stephyk.” posted by @aerial_m is licensed under CC BY-NC-ND 2.0

AFOs Part 4: Managing my expectations.

After some help from my neuro’s office and my mom’s mad “google” skills, I decided on another Orthopedics company in Ottawa.

Closer to work and in a brand spanking new location, I irrationally took this to mean, I should have tried them from the start.

I made an appointment, and this time right on the phone to the receptionist I said. “I’ve been having trouble. This isn’t my first rodeo and I’ve been disappointed by my options before. Also, money is not a limiting factor. Can you please pass both of those tidbits on to the person that I will be meeting for my consult?”

Forward? Yes and kinda crazy, possibly. I figured, maybe I wasn’t direct enough the first go round? Better to have her think a) I’m crazy demanding, and b) I can afford to be shown more than just the base model. My reasoning: I could temper both of those expectations in person, but maybe she’d be motivated to do some recon on the technology before I arrived.

I walked into the office, and it still had that new car smell (+1). It was bright (+1), the receptionist was pleasant and allowed me to email her my script while I sat there and waited (+5).

Turns out, I had been to this place a few years back, in their old location. My stomach flipped as I recalled that the person I saw at that time assured me that my rigid plastic AFO was all that was available (-3).

This time, the Orhtotist watched me walk, looked at my legs and feet, and listened to the Coles notes version of my DWTS story. I told her that I had been to another company recently and hadn’t been happy with what they had offered, and why.   We also spoke about the last time I visited a few years ago, and she went on to explain that the technology had come a long way in the last 5 years. Maybe there had been no other option at that time, she reasoned. I was skeptical, but I’ll concede really what else was she going to say, right?

She asked me about my motivation for a new pair and after a few minutes she then went on to suggested the WalkOn AFO by Ottobock. She didn’t really entertain other options, saying that she felt strongly that this was the best option for me.  She did not have a pair for me to try on, but showed me a picture, and explained how it differed from my rigid plastic AFO. She told me she would order them (in my size) and I could come in to try them on.

I went away on vacation and they were waiting for me when I returned two weeks later.

WalkOn AFO

WalkOn® by Ottobock

Interestingly, I had tried on the WalkOn at the first place I had visited, but it was the wrong size (like I needed a small, and it was a large). It didn’t work.

This was better, much better. As it was not yet fine-tuned to my foot specifically, it would not fit into my shoe. She was however, able to offer a pair of shoes that worked. I had to try on a pair of those awkward, ugly, bright white running shoes I loathed. The WalkOn feels very similar to my plastic AFO and at that I must admit, I felt another pang of disappointed.

Seeing it on my face I reason, she asked me what I was thinking. I explained that it didn’t feel much different, and asked her if it could go into any kind of sandal.

I also brought up (again) other AFOs I had seen in my search. For each one, she knowledgeably and rationally explained why she thought they weren’t the best choice. I wasn’t hearing what I wanted to hear, but I was hearing it in a way that I could process and rationally accept.

She conceded that it isn’t structurally, dramatically different from what I had but went on to explain that the thinner foot bed would fit into my normal shoe size, that the support didn’t come up the back of my heel, so there was no extra length and that this support didn’t directly make contact with my leg other than where it fastened below my knee. They would be less warm, and hopefully by extension more comfortable. She reiterated that carbon fiber is much lighter than the rigid plastic also.

“You shouldn’t try to put them into a sandal” she said. My face dropped. But why? She explained that putting it into a sandal would void the warranty. They are meant to be worn with a closed toe shoe. My stomach lurched again.

She again asked what I was hoping to achieve with a new pair of AFOs. “I want them to be comfortable and pretty, silly” I said. I sat silently. “I think that you want them to help you be less fatigued and sturdier, more energy efficient” she offered. “Yes” I said. Ok, that sounds good, I thought. I added that I really wanted them to be able to go into a sandal. The plastic ones are so warm, and tight, I repeated. We kept talking, and I realized that it wasn’t just the AFOs I loathed. I’m not a huge fan of shoes in general. Nor am I particularly enamoured with bare feet.  I would live in slippers if I could. Running shoes and closed toe shoes in general I find tight and constrictive, and uncomfortable. After an hour, I just want to rip them off. After more discussion, she finally pointed out, that my complaints were largely neuropathy related and to a lesser degree then, AFO related.

Whhhhaaaat?! I thought. I needed to lay down. This was NOT something I wanted to hear. Ugh. I took a deep breath.  I was suddenly very tired.

We talked a little bit more and she was direct in agreeing when I conceded that maybe I needed to manage my expectations about what I would find, but she was knowledgeable and kind and I didn’t feel rushed.   She agreed that I was still able to function without AFOs and that was probably making it harder for me to give in to getting them. But I was starting to flirt with that line, she suspected. It was a tough spot, she agreed.

I felt deflated, but I also felt like I had gotten the answers I was looking for. If not the ones I wanted.

But DWTS! I thought. Turns out, when they just lop off your legs it is in fact easier for an otherwise healthy body to adapt and excel. A body like mine would continue in some form or another to bitch and complain. My quads were already a little bit weak and caused my left knee to pop back when I walked, she pointed out.

I made an appointment for 2 weeks from then, and said I would call if I changed my mind and didn’t want to go ahead with purchasing them. This would give me some time to confer with my “peeps”, to talk to my insurance company and to figure out the $3000.00 price tag.

I needed a drink cupcake.

Source: "Hostess Cupcakes" posted by Hostess Cupcakes is licensed under CC BY-NC-ND 2.0.

Source: “Hostess Cupcakes” posted by Anna Fischer is licensed under CC BY-NC-ND 2.0.


Brace yourself…

Source "Failure" posted by TomNatt is licensed under CC BY-NC 2.0

Source “Failure” posted by TomNatt is licensed under CC BY-NC 2.0

 

AFOs Part 3: Accept failure as part of the process.

Mom taught us about plans. Lists, and plans. “Make a plan, and then work the plan” goes the adage. I had a plan, a mission statement – be on DWTS find a pair of AFOs that work for me.

Now, I reasoned, I would make a list of every possible, person, practice, company and organization that could help me. I would find examples from others, I would scour the interweb. I would watch YouTube videos and read message boards. I would find blogs, and email people. I had a plan, and I was going to work it!

I started by emailing my physiotherapist. She had previously referred me to a place in an effort like so many before her to get me to wear the braces I obviously needed. I wasn’t ready then, but this time around I phoned the company she had suggested here in Ottawa, and made an appointment for the next week. I checked out their Facebook page, and found pictures of pretty cool looking prosthesis. Prosthetic legs that looked like legit tattoos! Their stuff looked edgy, so logically I thought they catered to a younger demographic. Score!

I then set out to do the research. I found companies, and testimonials, and YouTube demonstrations. I printed out pictures, and bookmarked websites. I sifted through lots of info, some of it helpful, some not so much.

Here are just a few of the things I found:

Helios®
I found a company in Las Vegas, Nevada that designed something called a Helios brace. At $12,000 a pair, I was intrigued but skeptical. I am blessed that I could find that kind of funding if it became apparent that they really were the best option for me. But, there were a few things that gave me pause. Nobody can fit, make, or repair these braces except for the company that designs them. I would have to spend a week in sin city to have them fitted (wait, maybe that’s a perk?), and would then have to ship them to and fro should I need them modified in the future. I did however; find an interesting article about a young woman’s experience getting the Helios braces.

Step-smart
Step-smart braces look like an exciting option. They look low profile, and check out this YouTube video I found showing all the shoes that it can fit into.

WalkOn by Ottobock
I found these by wading through message boards for groups discussing Charcot-Marie Tooth (CMT). I realized part-way through my search that I got much better info from these sites, than from any of the CIDP/GBS groups. Just typing in “AFO” or “ankle foot orthotic” was also pretty useless.

AFO Light
The AFO Light seems to be what people talk about when they refer to a carbon-fibre AFO. Carbon fibre seems to be “the way of the future” in terms of AFOs, but if you ask me they don’t look terribly different from the plastic ones I have sitting in my closet. But I will keep an open mind.  In this vein, this was another I found. Looks bulky, but purports to fit easily into shoes.

Armed with my print outs and talking points, I walked into the clinic for my appointment. I explained my condition, relayed my experience with my AFOs until that point, and I passionately told my DWTS story. The fitter nodded sympathetically, and when I left, with a promise from her to call me once she had done some research and assembled some examples for me to try, I felt dare I say, hopeful.

Fast forward two weeks, and I went in to see what she had. I was presented with several different options, all kind of the same but also all kind of different. I began the process of trying them on. To my disappointment they were not all the correct size, and most were only for the right foot/leg. How was I supposed to get a sense of what would work if they didn’t even fit and on both legs? Strike 1 They all felt awkward and no better than what I had sitting at home. The person I saw seemed fixated on cost, even though I had expressed several times that cost concerned me less than fit, by far.

I don’t know if devastated is the right word (feels a little heavy-handed, don’t you think?), but I was definitely disappointed.

The Step-smart brace, that I had specifically requested hadn’t even been ordered.  The explanation given was that she didn’t have much experience with the Step-smart so she thought what was the point? The point, I thought? The point was that I specifically asked about them! Strike 2

She agreed to order them and I agreed to come back. I didn’t express to her my disappointment in the poor selection of improperly fitting options, I should have. But I didn’t.

 

Tin Can Telephone

Maybe you’re not hearing what I’m saying? Source: “Communication is the key” posted by Wiertz Sébastien is licensed under CC BY 2.0.

 

I found it difficult to communicate with her in a meaningful way, not a problem I usually have.  This didn’t feel good.  An off day? I wondered.

Another three weeks, and I went in to try the Step-smart. It turns out, she told me, that they had been ordered and then sold before I was called to come in to try them on. Strike 3

Originally I had been told that I would be able to take whatever pair I wanted to try home before committing to the purchase. All of a sudden, I found myself having to persuade her to let me leave with them. “But we won’t be able to re-sell them” was the reasoning she provided. I finally was able to convince her to let me take them.

I walked in them, and I wore them to the dog park, twice. They did fit into my shoes (although snugly), they were comfortable enough, and they were low profile. BUT they didn’t have enough spring to completely correct the foot drop in my right foot. As I walked, you could still hear my right foot slap the ground.

I was frustrated, and disappointed, and the thought of going back to the office for more fittings made me cringe. I was done. I decided that I wasn’t going to spend my money there. It had taken more than a month, and I felt like I wasn’t much further ahead. I needed to regroup. So I returned them, and mentioned that I’d be in touch if I changed my mind. I would NOT be in touch, I thought. I wonder if they resold them? *smirk*

Just so you know…I am consciously choosing NOT to name this company. Maybe it was a miscommunication, a misunderstanding, or maybe they were indeed incompetent. Anyway, I’m choosing not to call them out. I did not tell them I was unhappy with the service, I just decided to take my business elsewhere. I didn’t give them a chance to “fix it” so publicly slamming them, doesn’t seem all together kosher. I share this story, only as motivation to others not to give up…even when sitting at home and being bitter would be way easier.

Back the drawing board.


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.


Brace yourself…

“We do not see things as they are, we see things as we are”                                                                                 -Anais Nin

In my last post, I talked about my renewed desire to start trying new things, or at least to start enjoying things again – to get moving. So for the next few posts I want to talk about my experience with bracing.

I’ve procrastinated (shocker!) these posts because I wasn’t sure how to approach them. I’m still not, but best to start. My intention for these posts is to share my story for others who might be feeling the same feels, and fighting the same fights.

AFOs Part 1: I love hate you.

When I was diagnosed in 2005, it was not good. During the tumult of moving back home to Sudbury, a break-up, the rapid decline of my health and an increasingly desperate search for answers to what was happening to my body, I was referred to an Orthotist, a Physical Therapist, and an Occupational Therapist at the Sudbury hospital. I’ll be honest – at the time, I don’t think I really even understood why an Orthotist.  My diagnosis was unclear.  Charcot-Marie-Tooth (CMT)?  CIDP?  I was stumbling (literally) around in a daze hoping someone would figure out what was wrong with me, and just fix it. I held out hope that I wouldn’t need assistive devices of any kind. The doctors would figure it out and they would give me a pill, or a shot, or a lobotomy, and I would get better. All. Better.

In that stupor, I showed up to the Orthotist and in relatively short order, he fitted me for and fabricated a custom pair of ankle foot orthotics (AFO).

Check these babies out!

Check these babies out!

These “beauties” are supposed to compensate for the muscle weakness and subsequent foot drop that makes walking difficult and sometimes treacherous for me.  They are made to stabilize my ankles so I don’t roll them, and alleviate some of the fatigue of trying to stay upright on legs that can’t keep me vertical without an extraordinary amount of concentration and energy.

They do in fact, do all of those things. BUT, they are also warm, tight, awkward and hideous. They don’t fit in normal shoes or sandals. Any footwear that can accommodate them needs to be at least a size larger, and have a wide width to accommodate their bulkiness.

Hey, just for fun(!) Google: “shoes for AFOs for adults” I dare you.

When presented with these hideous “modern” medical marvels I did what any rational, fashion conscious, mature woman in her 20s would do.  I didn’t wear them.  I reasoned that while I would have to give up high heels, flip flops, and slip on sandals, why should I have to submit to the indignity of AFOs unless ABSOLUTELY necessary.  I would walk slower, be more careful, and deal with the fatigue associated with trecking around without them I decided.

Periodically, I would take them out, dust them off and wear them for a walk in the woods, to the dog park, out to get coffee on the weekend, whatever, just to see if they really did help THAT much with my gait and stability.

Here’s the thing – they do. But they are still warm, tight, awkward, and hideous. So (until recently) once I did my little test (usually every spring) I would (obviously) put them away for another while. I just couldn’t mentally or physically acclimatize myself to wearing them.

In the decade that I’ve had them and pretty much not worn them, I have fallen (not often) but to no catastrophic end and I can’t say that I (completely) regret the decision. Out of sight, out of mind. And for a long time I was dealing with all I could handle most of the time I suppose, without the added visual reminder of my losses.


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…