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.
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.
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!
