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.

The Run In

Last weekend, I bumped into my ex at a party for the daughter of a mutual friend. I hadn't seen him "face to FSH" in a couple of years.

He knew about my FSH when we were dating and was the relationship in my life when I was in the "should I risk passing on FSH to my kids? Should I have kids?"

At the time, I hadn't yet experienced the depths of FSH progression. Even though we all know it's a progressive condition and everyone tells us it's going to get worse so prepare yourself, I still thought I could "will" it away. Mind over matter...pray... have faith... miracles happen... this is as bad as it gets... All good sentiments. But, FSH is totally on it's own agenda. (Reminds me of the saying "if you want to make God laugh, make a plan").

He was of the view it would be selfish to have a child who could suffer because of my decision. I wanted children so much. It was one of the few things I knew I wanted from as early as I can remember. I had a big extended family so I wanted at least five kids.

But, God had a different plan.

We spent a lot of time catching up on each other's lives. He asked about my FSH of course, and how it was progressing, what I was doing to deal with it. Given I had my walker with me, it was hard to avoid the elephant in the room!

In the years that followed our breakup, and sidelined plans of marriage and kids, I realized we weren't so different.

We both had good jobs, our own homes and our own challenges and successes. We both got married to other people we loved. He had his two and a half year old at the party and I had my stepson, niece and nephew there, so we both had the family we craved and I had as much fun and joy with my kids as he did with his. Probably more because I got to sugar mine up and send them back to their other homes!

In the end, it reminded me that things may not work out the way you plan, but they will always work out in the end.

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.