I climbed a mountain (yes, really)

I didn’t blog about MS in 2016 because, well, MS bores me. I’d like to forget about it. Still, as 2017 is now well and truly underway, I have a few updates to add to this online record of mine.

My MS was stable in 2016

Symptoms remain and yes, some days were a write off. But my third year with MS was better than the first two. Win.

But side effects from MS medications were a nightmare

There is a difference between MS symptoms and side effects. And for me, 2016 was the year of side effects. Actually the middle six months of 2016 were a clusterf*#k full of side effects.

One year into treatment, Gilenya (my first MS medication) turned on me. Four months later (after one skin cancer scare, one trip to the emergency with suspected liver damage, complete skin breakdown and an all over body drug rash all chalked up to the drug) my neurologist and I decided to switch.

Switching MS medications is… unpleasant. But in this case, necessary.

I switched to Tecfidera, another oral drug which comes with a host of new side effects. But almost three months in, I am over the worst (or perhaps I am just over the embarrassment of flushing bright red for hours each day).

And in late 2016 I climbed a mountain

I am not a hiker, but my partner Jay loves it. Camelback Mountain in Phoenix Arizona is his favourite hike. So, in December 2016 (Phoenix is a desert: no hiking for me with MS there in spring or summer) Jay helped me reach the top.

It took me more than twice the time he normally takes to do the entire hike just to reach the summit (it ascends 1,280 ft, from 1,424 ft above sea level to 2,704 ft), and then of course I had to get down. But it was worth it.

He also filmed me doing it. He’s the best.

And as for blogging in 2017…

I’m hoping to be well, with nothing to record. So hopefully there will be nothing.

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.