My MS story continues – Part 2

Read Part 1 of Declan’s story here.

My Multiple Sclerosis (MS) remained largely invisible for about 10 years after my diagnosis. It was so invisible that it was suggested that I seek a 2^nd opinion and I did. However, regardless of the result I was aware of my gait problem, my fatigue and my urinary urgency so when MS was confirmed it came as no surprise.

MRI scans had become common in the intervening years since my MS diagnosis and, unfortunately, MS was confirmed. But treatments had also become available in those years. I was definitely more prepared for this phase of my MS rollercoaster ride. I had learned some important MS and life lessons, but I knew that there were many more to come. 

I had learned, albeit slowly, that Assistive Technology (AT) is good. My golf umbrella became a walking stick. I had fought against AT with all my strength, seeing it as a sign of weakness, but I now know that I was wrong. I learned that honesty is the best policy and my ‘old sports injury’ became an honest explanation of MS. AT increased my independence and honesty allowed people into my world. I needed people around me who understood.

We had moved to a bungalow not long after my diagnosis; you know that old phrase, ‘hope for the best but prepare for the worst’. A very early purchase was a ride-on lawnmower for our large garden. In hindsight, this may have been seen as an extravagance but in reality was a very early piece of AT for, without it, the garden would have been a wilderness. 

I tried to convince myself that life with MS could be almost normal. I owned my own business and attended my local university, part-time, achieving two Honours degrees. But my attempt to ‘carry on regardless’ was taking its toll on my body, meaning I learned another valuable lesson. I learned that the price to be paid for overdoing things is too high. I sometimes have difficulty in differentiating between doing as much as I think I can and doing as much as is reasonable.

Jean and I celebrated our 25th wedding anniversary in 2004 and travelled to Italy to mark the occasion. Rome is tough going with so much to see and do in a short space of time. I rented a wheelchair and was pleasantly surprised at how easily I settled into it. What made the decision so easy? It was my decision, my choice and it was not thrust upon me by circumstances.

People often commented on my, seemingly endless, positivity and good nature. I would smile and thank them for the compliment whilst knowing inside that they never met me on my not-so-good days because I didn’t go out.

I’ve learned not to dwell on the past and what might have been or worry about the future and what might be. I have learned to focus on now this moment in time.

Check back soon to read part 3 of Declan’s story.