Finding inspiration in the most unexpected place.... my blog!?

Well if that just doesn't beat everything. 

After a wonderful catch up lunch with a friend who shared his blog with me, I was reminded about this old thing! 

Clearly, I've been neglectful of late. It's not due to lack of events or epiphanies. Just mostly a lot of navel gazing in between trying to live instead of just surviving.

Going through my past posts, I remembered what a comfort writing was. How much I loved being 'in the zone' and letting my thoughts, emotions and beliefs just flow cool breeze on a hot day.

Lately, I feel more like I've been in a storm. Thoughts and emotions just whipping around like leaves, broken branches and patio furniture. The rain pelting down every which way feeling like little sparks on your frozen skin, thunder like god is trying to get you to understand something crucial and the sharp veins of ightening to remind you of a power beyond you. And, when it's over,  there's a feeling of rebirth in the calm and hope when the sun takes the place of the dark clouds.

Then I remembered: I love storms.

I don't like long posts. So stay tuned for a few more posts on the more stormy parts of my FSHD journey.

I will leave you with one bit of advice : start a journal. 

Record it, write it or film it. Just do it. You have a great story to tell, even if you think you don't. If you have a journal, take time to go back and read it. I had myself in tears reading about some of my own stories and it reminded me of how much I've been through. It made me grateful but also made me realize how strong I was during difficult times and that I could I be strong again. 

Love and FSH Muscular Dystrophy

So this is an appropriate day to post something on love and FSH.

Love and relationships are hot topics on FSHD online groups and chats.  I think we all feel having FSHD is a guaranteed bad luck charm on love.  I  know I have used it as a reason for failed relationships and not following my marriage time line. I recently realized it's not always the FSHD.  It's just the way love goes.

I read a wonderful article from Kristin Duquette on love and being disabled (http://www.mobilewomen.org/2015/02/im-disabled-20-something-and-believe-in.html?m=1) We have as much love to give as anyone else.  But we often forget we are worthy of the same love.

Not sure if it is my personality or the disease that made me feel unworthy of being loved.  I think those with disabilities feel like they are not whole,  including their hearts.  Which of course couldn't be further from the truth.

It's another journey we face and God be with those brave enough to stand by those of us who take awhile to figure it out.

On this Valentine's weekend I got engaged. It is still sinking in. It's becoming apparent that being loved is as much about loving as letting yourself be loved. 

I find it overwhelming.

Not just the love from the brave soul who signed up for the FSHD adventure with me.  But,  the honest love from those people in my life who I have shared this news with.  In a world so jaded, cynical and crazy busy,  I feel I very real love and happiness channelled to me.

I'm trying to take it all in.  It's scary but I find I am enjoying feeling 'young and in love'.  It's nice to have that feeling of love without the memory of heartbreak and pain.  It's nice to not worry about how the FSHD might impact the relationship.  It's nice to just enjoy the moment and let it all in.

On this Valentine's Day I wish you all (especially my FSHD champions) a world of love from all those around you and more importantly,  the strength to allow yourself to be loved.

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.

The Silver Lining

Yes, it sounds cliche I know. But for this post, I have to share some cliches, or fortune cookie wisdom, as I call it. No bad thing should ever go without a good thing taking place or a lesson of some kind, hence the silver lining.

Sometimes you really have to search for it. The key is that you should go search for it. Each thing, even a bad thing, leads to something else... often something much bigger. Some call it the butterfly effect.

In any case, I broke my wrist in September. This may not seem to be a big deal, lots of people break their wrists. But for someone with FSH, it can lead to much more, as I soon found out.

How I broke my wrist is stupid and small and who would have thought something so insignificant like trying to move a fan could have such ripple effects, but it did.

First of all, let me say that the fan in question should not have been there. Lesson #1: Don't put off for tomorrow what you can do today. I had been meaning to get rid of that fan for the past two years. But kept waiting for the perfect replacement and was too lazy to dispose of it. I should have gotten rid of it. But I didn't and so in trying to move it, I tripped on one of the awkward "accident waiting to happen" legs, and tried to break my fall on the unstable stem of it which broke in half, sent me down to the ground where I landed on my wrist and shattered my radius bone.

So now I'm on the ground in the unceremonious "I've fallen and I can't get up" mode. Phones nowhere in reach and all alone. Lesson #2: Women are like tea bags, you don't know how strong they are until they get into hot water. So I regrouped and bum-walked my way to a phone, pulled a McGyver move with a broom handle and managed to open the door. 

The rest is the usual trip to the ER followed by a cast followed by an xray that said the cast didn't work followed by surgery followed by heavy drugs and a the life changing moments that ensued.

As I said, broken wrist.. not such a big deal. But when you have FSH and are at the point in your "adventure" where you need both hands to transfer from seats, this is huge. Seats, by the way, includes toilets and the car.

Imagine that. Now I had to get someone to lift me off the toilet at the hospital because I was stuck. Embarrassing. Lesson #3: Always have clean underwear and shave your legs. OK, that second part was just for the girls.

Talk about your independence gone, in the snap of a finger. Lesson #4: One moment changes everything.

Thankfully, I had not hastened to sort out some mobility issues at home in anticipation of what may come. Lesson #5: Do all you can do while you can.

So I was, in fact, able to go home where I stayed for the next eight weeks. Eight long weeks. Thank god I was able to work from home or I would have gone out of my mind. I had to get my mom to move in with me which was really hard for me, but I think it finally made her feel like she was doing something, anything to help me. For me, it was humbling. Lesson #6: It's ok to ask for help sometimes.

Sadly, the laying on my back, the trauma of the fall and the surgery for which I was wide awake, the effects of the nerve block and far too much time to think, left my FSH in a what felt like a rapidly progressing state. My arms got weaker, my legs got weaker and my core got weaker. I had to get a walker and a boosters for the bathrooms at work and at home. I couldn't get past imagining a life of asking for rides, waiting fro help and no freedom. Lesson #7: Suck it up. It could always be worse.

I was so worried about what people would think of me in this new state. The walker, the booster, the limping... but I got to work and was embraced by all those I left. And was greeted by another colleague who, sadly, herniated a disc and had to use a walker after a five day hospital stay. Lesson #8: Shit happens to everyone.

So I am back at work and struggling a little, but I am back at work. More importantly, I am back to spending time with friends and doing some of the things I enjoy. I had to buy a new car so I could get in and out easy (how painful was that... not!) and have my VIP parking pass (disabled sticker) which really came in handy during the busy shopping season.

Most of all, it reminded me of how resilient I, and all those with FSH, are. I learned I had developed a pattern for when bad things take place. I cry, I mourn, I take a deep breath, I pull up my socks, I get on with it. Lesson #9: Life is too short to be on the sidelines. Get in the game.

And, my parents who as you know from reading previous posts, found some strength too. The broken wrist and all that came after it moved them slightly out of denial and thankfully made them realize, I'm doing ok. Lesson #10: Reality is what you believe it to be.

So out of all that came some good. I could do without the ugly 3" scar that came along with this. But I am grateful for the lessons it reminds me of.