What's in a name?

A new day

Last month I reached a new milestone in my FSH journey, a power chair.

After falling a number of times in a very short walk, my legs turned to that familiar jelly feeling and I couldn't stand. It took a couple of days before I could stand again but the feeling of vacancy in my body would stay, as would the fear of never knowing when I would fall again and why. I was at the mercy of the unpredictablity of this disease.

For many of us, the ability to find solutions and new ways of doing things gives us a feeling of victory. Every small victory over this disease is huge.

So I can't fix my legs, which feel like they are shredding at a rapid pace, but I can keep my independence a little longer with a power chair.

It's quite a humbling experience to see your reflection while you are on one of these. Forget looking sexy or elegant. Your flesh spreads out in the middle, you inevitably lean to one side or slouch, often you can't keep your legs together and getting through elevators and doorways are a performance.

Like so many people with disabilities, the frustration around the lack of accessibility and awareness of our every day reality, is bubbling up.

In fairness, people with disabilities take a long time to come out with their condition. They often believe their differences are an annoyance to others. They..we.. believe we don't have an equal voice or equal worth to others.

But we do.

As I crawl back into my solutions based instinct, I have learned 1 in 7 Canadians self identify as having a disability. By 2036, that number will grow to 1 in 5. Yet, the solutions offered by government, business and community leaders are still too basic, far too narrow in focus and lacking leadership and innovation. Creating an accessible and inclusive society is still not enough of a priority.

Barrier-free cities and universal design are not new ideas. They have been around since the 1980s. Yet the work being done is still around basic accessibility, like government buildings and services being accessible. Really? In 2017, that's what government considers leading the way?

Clearly, we are still decades behind on getting where we need to be. But my hope is our voices will become stronger. The only way to make change is to speak up, be heard.

Every voice makes a difference.

Are they failing me, or am I?

I'm writing this, lying in bed for the sixth week in a row. Once again, humbled by my FSH. This time, a fractured bone and a fractured spirit.

While I deal with the realities of the disease, I would normally be grateful for getting away with a minor break and the ability to work from home. Possibly even steal away some time for last minute wedding plans.

But I find myself dwelling on the fact that my latest fall practically had people around me walk over my blob of a body. They probably thought I looked ok so I must be ok.

Or the guy who pushed me out of the elevator because he was in a hurry. He probably thought I was just there as another hindrance from him catching his bus, not that I was walking slowly because I was petrified of losing my balance and falling again. So terrible that he might have been late.

Is it me or are there way more people who are walking looking at their phones, no regard to the people they are knocking over. A quick 'sorry' but please, I need to return this text.

Or those who don't think I am fun because I can't play sports, or do all the things that they do so easily. They think I should toughen up. They say if my mind and spirit is strong I can do anything.

I used to say that to people, but now I know your attitude can't fix what's wrong, only how you handle it.

I wake up trying to inspire, trying to lead, trying to be strong, trying to help others. But,  I am getting tired of my own rhetoric and others are tired of listening to me explain what I am going through.

Maybe I need to give myself a break, we all need to do that. With a stressful job, health issues, financial challenges and a wedding to plan, re-plan and re-plan. I think I will take the time to reset my goals or maybe move the goal posts a little.

Giveth and Taketh

As I plan for the wedding,  the FSH is rearing it's ugly head. Sudden rapid periods of deterioration have left me challenged to bend at the core or any joint. As much as I am happy with my love, I wonder each day if I am doing him wrong.  What will be left of me and this frail body by the time we say I do?

I worry each day if I will be able to walk down the aisle or hold my bouquet.  I try to stay positive and try abd think past my reality.  I know FSH will fight me every step of the way.

Extreme weather and FSH Muscular Dystrophy

Ah,  Canada. The country that I adore. You sure know how to do extreme weather!

I am lucky enough to live on the west coast of Canada,  the most spectacular place on earth. But I am spending the week in Ontario where it seems Mother Nature has spent a little extra time

It's freezing.

I arrived to - 5 and it's dropped to - 40. So pretty darn cold.

I find extreme temperature does not bode well with my FSH.. Or maybe I am spoiled with the mild temperature of the west coast. But,  being here has stiffened my muscles. And, has made me fear every step in the icy and snowy sidewalks. But I keep going, like another mountain to climb. Another challenge to conquer!

I have also discovered walkers don't do well either. The wheel slip in the ice like on a skating rink. I don't know how others do it.  I applaud you. Talk about an extreme sport!

Congrats to all those with a disability who weather all storms,  including real ones. You are champions.

FSH Muscular Dystrophy: I am a hero... shhh.. don't tell :)

Another late post. Hoping to get better at this now that I have installed the Blogger app on my phone. Technology is grand.

I wanted to update those of you who are following along on this journey with me... thanks for that by the way. Adventures such as these are always better with others. 

The complexities of this disease leave those who have it, and those who are trying to care for people that have it, confused and frustrated. You are not alone. This is surely a steep journey with lots of bumps along the way. But the view can often be enlightening.

It is only recently that I realised that this disability makes me, and everyone else with a disability, a hero albeit a reluctant one. We feel that being born with something that you have to live with isn't heroic. But now, I believe it is.

I often thought I had to do something extraordinary to be inspiring if I had a disability. I read about amazing people who have turned this disease into a great opportunity to be motivational speakers, become public advocates and lobby governments for change. They invent things and break boundaries and I didn't think my getting up each day and living meant much. But it does. 

A person with a disability faces their own struggle each day with each task. I know now that the determination not to give up, not to just stay in bed is actually a really big deal. When walking up a driveway is like hiking a mountain and lifting your coffee cup is like lifting a boulder, it is a big deal to get up, face the world with a smile and move past all the hurdles each day brings.

So I am going to give myself a pat on the back and quietly accept I am a hero too. Just like the thousands like me who do not know what each day brings with their disability.

Since my last post, I have experienced a great deal of muscle loss in my legs and arms. My left arm doesn't function properly and I can't bend at my knees well because of the muscle loss in my calves and thighs. FSH keeps you guessing, you never know what you can't do until you try to do it and realise.. well, you can't. But on the upside, I am still independent, still working and still doing as much as I can.

On the research front, I recently attended the Friends of FSH research and patient meeting at the University of Washington. I heard from a number of leading researchers in FSH. These are our FSH champions and I have no idea where we would be without their dedication to unravelling this disease. They are moving forward in leaps and bounds in my opinion, studying drug therapies and creating viable mouse models and learning more and more about the evil DUX4.

Until next time, stay happy and at peace. You are heroes too!

Long time no...fall.

Well, it's been a bit of time since my last post. I am happy to report, I haven't fallen since. 

What a milestone.

I am sure that isn't nearly exciting enough of an update.

I can tell you that I have been adapting well with the walker at work, which has been an interesting adventure. People still wonder why I need it as I am not using it all the time. But they are scared of me running over their toes, so I do get my way in meetings.

I have started organizing my first fundraiser. No idea why it is so anxiety provoking for me. I hate asking people for money let alone anything else. But I think of all the new FSH champions I have met and I try to focus my asks for them. It makes it easier.

I'm back in the relationship world. Very ironic how life works out. Getting back in a relationship with someone when you are at the worst part of FSH... (to now). Well, whatever happens, I have learned that I am strong enough to handle it.

Progress of the disease, well I am still fairly independent. Stairs, hills and uneven surfaces are still not my friends and I have had to turn back at one or two events because of inaccessibility. I am gracious about it even though the event organizer is mortified. It's a learning experience for everyone.

The pain is manageable but I have started an anti-inflammatory diet which has been helpful. Anything to keep the pain and progression away until there is a treatment. 

Ah, a treatment. Still looks promising. I hope it's in time.

Until then I have been blessed with a wonderful, quirky group of family and friends who make this journey worthwhile. Thanks to all of you!