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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.

Blogging about MS: Responses to my blog

I’ve been blogging about life with MS for about 18 months now. I maintained my anonymity for the first twelve months, but since January 2015 I have embraced my pseudonym and come out of the MS closet. I find the entire process liberating.

Quite frankly, it would be too much effort to hide all of the little things that are obvious to anyone in my daily life. Because I am always tired. Because I sometimes veer to the left when walking. Because sometimes I hurt for no reason at all. Because I am covered with bruises that I don’t remember getting. And, I repeat, because I am so tired.

But by not hiding it, I am exposed to the reactions of those I know and love. There have been three broad responses:

  • There are the responsive readers. The ones that comment or text or call when I post something (especially when they find a typo – you know who you are). Number one among these is my mother (unless, of course, it is one of the sadder posts like this one, when the response is deafening silence).
  • There are the quiet readers. The ones I know follow because they prompt me when I fail to post something regularly. Thank you, it is heartwarming to know you notice when I am being lazy.
  • There are the avoiders. The friends and family that feel they can’t unsubscribe because it would be rude and therefore ignore but don’t engage. I understand, there is no judgement. This blog isn’t the happiest place on the internet… All I can say is, wait till you read about my next project for the Wheeler Centre.

Perhaps best of all are the responses from those I do not know. The others with Multiple Sclerosis, who share their experiences with me and I them. Thank you. Your blogs, posts and comments are a source of knowledge for me when I am damn well over another day with MS.

MS Walk 2015: Thank you to the LadywithMS team

Two weeks ago today 62 people walked in the Sydney MS Walk in the LadywithMS team. It has taken me this long to come to terms with the fact that those people – my friends and family – were walking for me, and for the crappy disease I happen to have.

It is an overwhelming gesture. Thank you all.

And it has to be said, there would not have been a LadywithMS team (or cookies with my name on them) without my mother and sister. You are both beautiful souls.

Check out the photos here. And thank you again for your love, support and effort.