MS & Me

The View from Here: Opinions on a Life with Multiple Sclerosis

My white blood cells have been on the naughty-step for more than a month now. The first blood test said they were low. The next one said that they were EVEN lower. I gave another sample last week and haven’t heard back yet. I should really call the hospital but I just remembered that I was going to defrost the freezer today……  This ostrich-like behaviour can be translated to “I really want to stay on this new MS drug but I am scared I will be taken off it if my white blood cells don’t cop on”. On the up-side, my household appliances have never had so much attention.

Willeke moved to Ireland from her native Belgium in 2002. Diagnosed in 2005, she was intent on being a voluntary advocate for people with MS after her retirement 4 years later. Willeke has been described as inquisitive, tenacious and very independent. She hopes to keep on writing when her eyes permit her to, and to help others see sense in what is often MS-nonsense.

Diagnosed with MS in 1988, I was told that there was no cause, no treatment and no cure and to add to my emotional turmoil there was no definitive diagnosis either. That didn’t leave a lot of hope for the future but my mother’s brother, who also had MS, helped me through the earlier days, weeks and months. 

While in Barcelona the topic of MS and Young Adults was discussed. It was interesting to me, as I am the youngest person I know with multiple sclerosis. I know some very inspirational people with MS who happen to be older than me, but I sometimes feel as if my concerns as a 26 year old are irrelevant to many of the people I know with MS. Maybe, because they already have established careers, are married, have bought their own house and achieved many of the things that I find I am holding myself back from. I'm sure there are people who are older who experience the same concerns as I do. This blog is for anyone who reads it and anyone who relates to it!

Recently I was lucky enough to attend a media briefing in sunny Barcelona hosted by Novartis (makers of Gilenya) ahead of a conference - Advancing Research in MS and the Brain.

I have known that something was up in the old noggin department for a few years. That sinking feeling when I forget a word I KNOW I know. When the check-out at Aldi is too much for me to keep up with. When I can’t help a nine year old with her Maths….. The best way I can describe it is to say that things aren’t working as smoothly as they used to.

In my earlier blog posts, I've mentioned that getting my MS diagnosis was somewhat of a relief, after so long of not knowing what was wrong with me. Obviously I wasn't pleased about it, it wasn't what I'd hoped for, but deep down I was kind of glad that I hadn't been spoofing all those years. 

'Nobody realises that some people expend tremendous energy merely to be normal' Albert Camus 

Baz Luhrmann had one piece of advice that he considered vitally important to give to the class of ’99. He said that if he could only offer one tip for the future it would be to wear sunscreen. He had other tips to offer but the wearing of sunscreen was 'the tip'