Chronic disease

MS Xplained: My story in an app

MS Xplained is an introductory guide to the complex world of MS., in the form of an app.

Medicine X_MS Xplained_Ladywithms

MS Xplained: An app about MS

Being diagnosed with MS is hard

Ever been to the doctor and not understood what they said? It happens. And it definitely happens when someone says you have MS… The only coherent question I had when my diagnosis was confirmed was ‘can I still drink alcohol and eat cheese?‘ (yes, in the face of the unimaginable that really was my question).

Despite normally having myself together (with the ability to ask relevant questions), being told you have MS is overwhelming. There are questions you need to ask, and information you need to understand at a practical level. After all, it is your body and your disease.

But there is introductory information available

MS Xplained is MS explained by real doctors for real people with an MS diagnosis, in the form of an app. It is based on real MS stories – in this case, mine and Melissa’s. The goal is to help those newly diagnosed understand the disease and the treatment options available.

This app explains MS in a way everyone can understand. There is no judgement, and no doctor-speak. It is just the information you need to know to help you – or your friends and family – get the basics right.

As someone with MS, I can say this information would have helped me when I was diagnosed. Once you understand this information, you can choose how far you take it and decide what else you want to know (even if all you can consider wondering about is whether you can eat cheese).

Download it for free here.

 

Medicine X worked with MS Australia and MS Research Australia to develop the ‘MS Xplained’ app. Full disclosure: I am a National Advocate for MS Australia, and I did not receive any fee or reward for sharing my story or writing this post.

Huffington Post Blog Australia

I Feel Sorry For The Person Who Left Me This Note. They Clearly Don’t Understand Disability

This We Don’t Talk About story was originally published by The Huffington Post on 2 May 2016. You can read it here. A longer, more complete version of Justine’s MS story is published here.

 

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.

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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.