MS & Me

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.

Community blog nominated for award

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

Three years ago, my computer died a sudden, premature and grizzly death. No warning! Just gave up the ghost during a Google search. I lost EVERYTHING! Apart from teaching me the hard way to make regular backups, I had to embark on a treasure hunt to recover any paper copies of important documents I had lying about.

We need 'focus' in our everyday lives to achieve our goals or targets. We need self-discipline to stay on track. Our battle with Multiple Sclerosis is a never ending battle and there are very few lulls in the fighting and because of that we need focus more than most. The need for focus begins with little things, with attainable targets. We need 'our little victories' as Claire Mitchell wrote in her recent blog. The longest journey begins with one step. Take the first step and set yourself a target, the second step is to set a route plan to reach the target and the third step is a celebration having reached your goal.

This week blogger Lucina Russell shares her experience of public and private health insurance.

MS is a life-changing event, but so is having children. If MS had not entered Willeke's life, she absolutely would have wanted children.