Videos

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.

Looking after your health: Doing what you’re told isn’t always enough

I love this 2011 TEDTalk from ‘ePatient Dave‘. The talk is relevant for anyone with health issues, and especially anyone with complicated health issues that require more than one specialist.

Dave survived a diagnosis of terminal cancer largely because he decided to proactively participate in his own healthcare and treatment.

In Dave’s words ‘Patient is not a third person word. You yourself will find yourself in a hospital bed, or your mother, or a child … the most under-utilised resource in all of health care is the patient’ (around 1:20 minutes).

Dave didn’t rely on one diagnosis or one doctor or one hospital. He managed his own records, he sought out information from other patients with the same condition, he sought out recommended doctors and medications, and he is still here years after a terminal diagnosis.

The key here is not to stick your head in the sand. It is to engage with others who know what you need to know and who have experienced what you are experiencing. This is because ‘Patients know what patients want to know. It is the power of patient networks’ (around 10:00 minutes).

ePatient Dave’s lesson is clear. Be motivated, be informed, and then advocate for yourself.

Thanks to TEDTalks and YouTube for the video.