My MS Journey Part 1

I was tired and had to rest, despite it being only 10 a.m. My gait was wrong and my balance non-existent. Sometimes my words did not come out of my mouth as I’d formulated them in my brain. My concentration would wander off and I always had difficulty recapturing it. When I needed the bathroom, it always required immediate attention. NOW! Not in 10 or 15 minutes; time was of the essence.

I didn’t know what was wrong, but something definitely was and I needed answers. I needed to start treatment, I needed a cure; I needed to be well again. I was 31 years old, married with two beautiful daughters and my whole life was ahead of me with all my hopes and aspirations.

My official Multiple Sclerosis (MS) journey began in 1988 but I knew something was wrong before that and others had been aware of the signs for some years. They knew what my doctor was looking for when he sent me for tests. I never suspected MS, so when the doctor said “You have Multiple Sclerosis”, my world fell apart and crashed around me. My future crumbled, evaporated, vanished before my very eyes. 

My life continued, but the dynamic had changed. Reality shifted. I would have to re-imagine myself. I was never one for self-pity and, with the help of family and friends, I slowly began to realize that my life was not over. My life was going to continue, albeit on a different path and my plans would and could be changed.  

What effect did MS have on my daily life? It didn’t change much, visibly, immediately after my diagnosis. I had to plan more. I had to know where the washrooms were and, every time we went somewhere new, the first thing I would look for was the toilet. I was self-employed so the boss knew about the restrictive nature of MS.

In the initial years' post-diagnosis, I blamed my gait problems on an old sports injury and my pressing need for a toilet was blamed on an upset tummy, or too much coffee; leaving a meeting at short notice or barging my way into a toilet was always an embarrassment. But embarrassment was always better than an accident. My posture worsened and I could no longer stand unsupported even for short periods before my knees buckled and I would crumple to the floor. Shortly after my diagnosis, I was marching in our local St. Patricks Day Parade and the pain in my legs was so great that I cried. Imagine that, 30 something and crying in public for no visible reason. I enjoyed rock fishing and one day had so much difficulty climbing back up the rock-face that I knew I would never do it again. 

My mind was settling and I was now willing to accept the ‘never agains’ – I had accepted my MS but not resigned myself to it. 

Read part 2 of Declan’s story here.