2018autoimmune diseaseChronic diseaseInspirationalMSMultiple SclerosisOcrevusRelapseWriting

Five Years With Multiple Sclerosis

Five years with Multiple Sclerosis_LadywithMS

Last week was the five year anniversary of my diagnosis of multiple sclerosis. Not exactly something to celebrate... but I’m uncomfortable not acknowledging it. My life changed and I can’t escape it.

I've spent some time looking over my posts on this blog. I have written inconsistently over the years. In the early days I wrote when I was ill, no doubt as a form of therapy. With the benefit of hindsight I can see how angry I was in my first blog post and how much happier I was when I reflected on my first two years with MS. Despite posting infrequently over the last two years, my purpose remains the same. This is my record of life with multiple sclerosis. I write less frequently now because I am healthier (with a rather unfortunate exception or two), but also because the career I started to build in a new industry after my diagnosis - kicked off by my Wheeler Centre Hot Desk Fellowship in 2015 interviewing people about chronic illness - is starting to take off.

So. 2018. It has been a tough year. New medications, new symptoms and an MS relapse.

I didn't write about the relapse because I was just too darn tired. It was a relapse characterised by the most severe fatigue I have experienced so far, and a shocking (and I use that word deliberately) new symptom. That symptom is still too mentally and emotionally uncomfortable to write about... But I will. At some point.

I will also write more about starting Ocrevus. From a lifestyle perspective, it is brilliant: a six hour infusion in hospital twice a year. But on the other hand, I had a relapse (verified by an MRI) within six months of starting this new 'wonder drug', so we will see.

There have been beautiful wins. Professionally, I’ve rebuilt my career in a new industry, interviewed exceptional writers (some of who have become friends, you know who you are) on my literary podcast The Garret and been published in publications I love. In terms of advocacy, I made it to Rome for MS International Federation's World MS Conference and to Canberra for the launch of 'The Roadmap to Defeat MS' and MS Australia's 2019 Election Platform. I still love being a National Advocate for MS Australia.

Personally, I’ve taken courage from others with chronic illness. Really, this is a wonderful community. And I've been supported by a wonderful family and fallen in love all over again with my partner Jay.

Life is good, even is MS is sometimes fucking shitty.

I will try to write more often in 2019.

And if you are wondering about this photo... I took myself out for champagne to celebrate five years with MS. Because why not?