MS & Me

How full is your (tea) cup?

MS & Me Community blog reach the final

We have all had those conversations with ourselves - 'what would my last thoughts be if I was on a sinking ship?’  As a non-believer, I've wondered if I would I hedge my bets and start to pray to a (wo)man above. The closest I've come to that sinking ship 'moment' was in the days and weeks around my unexpected diagnosis with MS. In those long days, I was overwhelmed with good wishes, cards and gifts from family and friends. I was given religious relics, mass cards and messages saying that I was in people's prayers. I appreciated each and everyone of these gestures, but I confess, it did nothing to draw me back to the teachings of my Roman Catholic upbringing. Rather, it reinforced my lack of faith. Would I say that I am a full blown atheist? Probably. This can be tricky living in Christian Ireland, when education, births, deaths, marriages and everything in between is immersed in religious ceremony. But I am happy enough to go along with these and actively participate at times. Am I a hypocrite? Probably. 

I was just reading a blog post by Dr Eric Downer on the patient-researcher divide on 'Living Like You' and it brought to mind the need for patients to take part in research. Gandhi once said “the future depends on what we do in the present”. I know that he wasn’t talking about research and Multiple Sclerosis but it holds true just the same. If researchers do not do the research and we do not take part in that research then we are going nowhere fast; As Dr Downer said “We can read forever about the progression of the disease and symptoms in textbooks and journal papers, but we must talk more to people to understand individual experiences and hence become more informed.” Without the participation of patients such enquiries will grind to a halt. I think that if researchers have personal interactions with people affected by MS (or any other illness for that matter) it takes the illness out of the theoretical realms and lands it firmly in the personal realm.

The choice to disclose an illness, newly diagnosed or not, to your employer is very much a personal one. Whichever you choose, fear of losing your job or being discriminated against can cause sleepless nights just when you need your rest more than ever.

Back in my school days, there were two types of copies: the ones with the lines and the ones with the squares. A protractor was about as sophisticated as my pencil case got - although, I was ecstatic to find lethal weapons (set-square and compass) therein! Things have gotten much more complicated in the year of the loom band with all kinds of paraphernalia to be bought before September the first.

Community blog nominated for award

I think I have an aversion to the World Cup. In July 2010 I ended up in hospital, and was subsequently diagnosed, with MS. Roll on 4 years, and I was back. I was in a different hospital, and the relapse was totally different than my previous one, but the drill was the same. 

Recently I took a trip with some of my fellow bloggers to Lisbon. During a chat over coffee with one of the ladies the subject of  "When I was diagnosed" came up. It inspired me to go rooting though my college boxes when I got home and I found a notebook I had while I was going through the diagnostic process. When I think back to that time I tell myself that I remember every thought and every feeling I had. Well it turns out that I don't. When I was reading over my written ramblings I felt as if it was written by a different person. Life really has moved on so far in the short 3 years since I was diagnosed. I read about the fears I had, the feelings I experiences and the thoughts that came to me. The trauma of the diagnosis had given me such a distorted view of my life and my future. I thought I was fine, but looking back it was an extremely traumatic time in my life. I was wasting energy thinking about something that might never happen. This got me thinking about the advice I would give myself if I could magically send a letter to the past. Here is my letter to me:

The View From Here: Opinions From a Life With Multiple Sclerosis