This disease arrived on our doorstep in 2014 with all its baggage. It invaded every space in every room, taking up time in every family activity and is on my shoulder when I work as well. It’s part of my good days and very much “active” in my bad days.
MS undoubtedly causes an ongoing challenge to the emotional balance of family life, purely down to the unpredictability of what each day or week will bring. With every new day or symptom, I with MS and family members experience loss and grief when it is realised that something else has changed or there is a new loss in functional ability. I have, over the past 5 years, as a form of my coping mechanism allowed a lot of the changes visible or invisible to pass into my sub consciousness and just become the norm. Has this been the right thing to do? I have said from the outset, as have many, that MS will not define me. So not allowing it to come into my conscious stream of thought on a day to day basis puts me in control of the narrative.
Sometimes of course we close the book and forget which page we were on. These are the bad days when the intrusion of MS into our family is challenged, our rhythm is upset, we can often take a few days to reset and get into a new rhythm. Is this different from any family in the country, in the world for that matter? It just happens that it’s MS that impacts us. Many families I know have recently been faced with much harder and far reaching challenges that I cannot even begin to comprehend. The loss of a loved one unexpectedly or a diagnosis that impacts directly on their life expectancy.
As I say to my wife “now that is a problem”. It doesn’t negate from the fact that MS impacts our family and extended family. It very much puts it into perspective that life could be so much worse than it currently is.
I have the most beautiful family a person could ask for. The most energetic and understanding wife, I believe, in human existence. I’ve amazing support from my extended family, including my friends. There are the ones who support my mental needs by pointing me in the direction of new therapies or those who help me in getting things done that ease the burden and allow me to rest. As the person living with MS, I don’t know where to begin in thanking them all for the support they have given us.
The support of my parents and my two “older” sisters who don’t necessarily see the “day to day Niall” as much. They are not supporting the MS, they are unconditionally supporting us and their very much “younger” brother. This, despite their own challenges in day to day life. The support of my cousin/brother and sister in law every day and week who seem to instinctively know when we need them. The lads and our “therapeutic” catch-up, or two, every year. My wider circle of friends and their drop of a hat attitude in supporting us if we need them. These people are my family. MS isn’t in my family it’s just an add on that we must deal with every day. It’s changeable like the weather so we dress accordingly and move on and hopefully the next day is a bit sunnier.