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.

My Circle of Influence Just Got Bigger

Today was a good day.

We often don't take the time to celebrate all the good things that happen in our lives. It seems to be human condition to gravitate towards the negative, the drama, the conflict. But I think one way to create a positive life is to recognize the good moments and spread those moments around - let them infect other people.

I met a few people today who are either affected by FSH or have family affected. We've been trying to create a local support group to share stories, ask and answer questions and gain insight to the differences and similarities of this mysterious condition.

As always, I find similar stories to my own but packaged slightly different. There is comfort in knowing someone understands what you are feeling. It's a hard thing to articulate sometimes.

We had a great time chatting, not just as people who have this 'thing' in common, but just people who enjoyed each other's company. It's always good to surround yourself with the right people.

That's a good day.

Circle of Influence

For those who know me, you have heard me say a million times how important a positive circle of influence is. Someone in my circle sent this post to me yesterday. I did my part by re-sending it to everyone else in my circle. The entire post is excellent and worth reading, printing, framing, pretty much anything short of tattooing. Surrounding yourself with the right people is top on the list.

For me, the 'right' people include those who support me through this challenge and all other challenges I face that fall in the 'part of life' category. But, they also include the people in my life who don't understand FSH and what it means, those who don't believe me when I tell them what I am going through, and those who just tell me to shut up about it. It is sometimes those people I value (mostly in hindsight) because they make me fight for the life I want to lead.

Ironic, when you defend something it ends up pushing away your own doubt. The words that sting the most aren't new. I say them to myself a million times. But when I hear them, I am driven to defend myself.

"No, I don't want to tell people I have a back problem. I want to tell them the truth."

"No, I am not lazy. I am really just tired."

"No, I am not vain. I really needed that operation."

"No, I am not taking this too seriously. I am trying to learn, teach and inspire something positive out of the situation."

"Don't tell me I can't."

Some of these thoughts came from the people closest to me. Some meant well, some were just thoughtless and some still live in a reality where having a disability means game over. As my sweet nephew likes to say, "No, game NOT over".

It has taken me a long time to get "through the muck" and realize how strong I am. Not just because I fight the ideas I don't like (whether they come from me or someone else), but because the majority of my circle consists of strong, caring, compassionate people who care about me and see past my disability. They don't all have to be experts in FSH. Some of them don't even know what it is. But it doesn't matter. They see me for who I am, listen to my dreams, give me a hand or a kick in the butt when I need it. Most of all, they make me laugh. With laughter you can get through just about anything.

To my circle of influence, thank you.