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Declan in his wheelchair at a pier in Spain

I joined our local gym many years after my Multiple Sclerosis (MS) diagnosis and, to tell the truth, I was sorry I hadn’t joined earlier. That old adage ‘use it or lose it’ is so true. Exercise works! Initially, I would walk in and out; that became walking in and resting on the way out, and later it became wheelchair in and out. Now I use the wheelchair-friendly exercise machines, but I still go to the gym two or three times a week. Exercise works!

I continued to work for 22 years after my diagnosis, and in 2010, after a short hiatus, I realized that I couldn’t continue; I hadn’t realized how tired I had become at the end of each day until I stopped going in. My quality of life improved after I made the decision, and you cannot put a monetary value on that.

Our garden was still the same size, but maintenance was taking longer and took a lot more effort. Was I slowing down? The short answer is YES. I had learned to listen to my body and respect my limits. We sold our home of 25 years and moved into, what had been, my wife Jean’s family home but not before making it totally accessible, future-proofed, low maintenance, and very energy efficient. Our nearest neighbor was now within shouting distance.

I told you in Part 1 how bladder problems affected me from very early on in my MS journey and, in 2015, my bladder refused to work anymore, and I had a suprapubic catheter inserted. Those of us who have one know that it makes life easier, yet more complicated at the same time.

I did my utmost to retain my independence; some (many) would even call me stubborn. Those words are interchangeable in my case. Independence is hugely important to me: the ability to do as much as I can for as long as I can on my own. If I am to be accompanied on an outing it must be because I want it, not because I need it. The smallest of chores takes me a lot longer, and, depending on the chore, I may be tired afterwards, but I have learned that it is OK to ask for help with chores and to rest during or afterwards.

I was never much of a sportsman and if I could find a shortcut to an arduous chore I would take it. I wasn’t lazy, but I just knew from early in life that I was never going to climb Mount Everest or run a marathon. I am my own harshest critic and I haven’t yet learned how to go easy on myself. Perhaps I never will. I counted my two college degrees as major victories but, as my MS clock ticked away and victories got fewer, I learned to appreciate the smallest of victories.

Fear, concern and worry haven’t been a part of my mindset for many years. Decisions must be made every day, some good and some not-so-good, but I have learned to live with them and their consequences. Qué sera, sera. I enjoy watching sport, particularly rugby, but getting to a live event is not easy so most of the time I settle for the television in the comfort of my own home, but I do miss the atmosphere. A decision to go on a holiday is even more complicated; I love my holidays, but they require major planning and MS may scupper those plans at the last minute.

I developed kidney stones early in 2020, shortly before the world pandemic was declared, which resulted in two stays in hospital to remove the stones. It confirmed what I already knew; bad things that happen are not all caused by, or related to, MS.

All MS journeys are full of unknowns, full of ups and downs, full of lessons to be learned, and, whilst we all have the same label, we all have a different story. This was my story, not yours.

Read part 1 and 2 of Declan’s story here.

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