I wet myself in public a few days after my Facebook message to the person who left a note on my car went viral.
I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.
I sympathise with people who don’t understand. I didn’t understand MS or disability until I was diagnosed. I do now.
And this is what I want you to know.
I am eight years into my diagnosis of Secondary Progressive Multiple Sclerosis.
Everyone’s disease is different. We all have different stories, but we have similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.
For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.
They also don’t know how to react to my increasing disability.
Two months ago, I had my first instance of not being able to walk. I say first, because it is likely to happen again.
I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn’t walk, I couldn’t move. I sat on the grass and sobbed. Fifteen minutes later I was able to raise myself into a chair.
My friend could have helped me move, but I wanted to do it myself — losing my ability to walk, even for a short period of time, makes me cling to my independence even more.
The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.
MS is more than that one horrible episode or bladder mishap. It is constant.
I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.
I can’t feel my feet. That means I can’t wear shoes that don’t tie or have a strap, because I don’t grip like a normal person and shoes just fall off.
I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don’t use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.
And I am in pain.
When you look at me, I am in pain.
When I appeared on Channel Ten’s ‘The Project’ to talk about the Facebook post, I was in pain.
This is how it impacts my family and my future.
My children, Annabelle and James, live at home. They have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.
I have weeks when my body stays the same, but it never lasts. I notice my progression. It makes me think of my future.
I am an only child. My mother helps me a great deal, and worries what would happen to me — and my kids — if she were gone. In the normal scheme of things, I should be the one worrying about them, but she is confronting her daughter’s mortality.
I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. Then again, I wouldn’t want to know unless we could treat or avoid it.
I want my kids to be kids. I don’t like to ask for their help, I don’t want to burden them. I want them to experience the freedom I had, growing up with parents who didn’t have MS.
MS makes things hard, and some things are no longer possible. Sometimes it is just a little worse, and sometimes there is a steep change.
My bladder is getting worse. I will have to learn to self-catheterise soon. The thought frightens me.
I still feel sorry for the person who wrote the note. They clearly don’t understand disability. But good things have come from it — there is greater awareness.
And I hope people read this. I hope it makes them think.