My MS Fears

This week Niamh McCarron lets us in on challenges she confronts, the bridges she has crossed and the fears that sometimes haunt all our nights. 

“We’ll cross that bridge when we come to it”. That's my normal approach to dealing with uncertainty and fear. The truth is, I will normally do anything to avoid crossing the bridge at all and if I can get away with it, I’ll avoid it altogether!

I don’t like talking about my fears, because that means I have to think about them and generally I try to keep those thoughts in a wee ‘MS box’ locked away the back of my mind. I know it’s there, rattling around, but I don’t delve into it very often.

When I sat down to write this piece, I decided that if I was going to do it right, I had to at least acknowledge that I am sometimes afraid. I don’t get scared very often and so far I believe that having a “deal with it when it happens” attitude has helped me to cope with my MS diagnosis and progression. Thinking and writing about being afraid takes me outside my comfort zone - it’s not in my nature to stop and think about all the what-ifs. 

Of course, everyone has fears. The week of writing this coincides with the Manchester bombing (and more recently the London attack); we’re all very aware that it’s a scary world we’re living in. A large-scale event like that can make you feel small and that your own fears aren’t relevant or important, compared to people with Real Problems (with a capital R and capital P). I don’t think that’s true, though. The fears and thoughts that occupy your mind and keep you company in the middle of the night when you have a flare up and can’t sleep are very important and significant.

The theme for World MS Day this year was “Life with MS” and thankfully my life with it is pretty good. I don’t have too many bad days and I can usually get on with doing what I need to do. There are times when I get afraid though, especially about the future. MS is such an unknown illness, and while I am well now, I have no way of knowing how it will progress.  

I recently wrote a short piece about the idea of ‘Quality of Life’ and its importance to me, something which I am very passionate about. The flipside of that is where my fears lie. The fear that the freedom that I take for granted today will, someday, be taken away from me. What if I can't work someday? I won't be able to pay my bills and rent but as important, I won't be able to enjoy the daily interactions with my colleagues and clients. I have worked hard to build up my career over the last 10 years and I am a long way off retirement age yet. While I dream of winning the lottery and jacking it all in, the thought of having to give up work because of illness frightens me.

Similarly, if I become too unwell to go out and about, how isolated will I become? How long will it be before everyone else's life moves on without me? What will happen if I become dependent on someone looking after me - how much of a burden will that be to my husband, family and friends? This is one of the fears that gets me in the pit of my stomach, usually in the middle of the night, when I am too hot or cold or restless or tired to sleep and leaves me anxious the next day.

Being afraid is hard and it can be exhausting and lonely. Talking about your fears can help and taking steps to plan for the future can ease some worries. I hope that my fears don’t materialise, but if they do, I hope I have the strength to keep on crossing those bridges. That’s how I’d like to end this post on my MS Fears, by saying that while they are real and valid, they will never eclipse my MS Hope.

Your ever-hopeful friend,