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Person balancing with the sunset behind

Multiple Sclerosis (MS) is a massive disruptor that arrives when our family lives and careers are taking off and we owe it to ourselves to do as much as possible to minimize the disruption it can cause. The trajectory of the disease is unpredictable and different for everyone and, because of this, my way of dealing with it may not be the same as yours, but my advice, for what it's worth, is to be as informed as possible before making a plan, but be prepared to be flexible with it.

MS drugs and diets are available but this blog is not about those. This blog is about what I have done to help me along the obstacle-strewn path that is the MS highway. How I have found balance and equilibrium.

The path I chose was influenced by other people’s MS stories I read, influenced by where I was in my life and on my MS journey and what information was available at the time. This is my story and I hope it will be of some help to you on your journey.

Balance and equilibrium mean the same thing. Balance, in the physical sense, and MS do not sit well together but equilibrium and mental balance are essential. Acceptance, but not resignation, of where you are and of your limitations, helps achieve equilibrium.

Denial, Anger, Bargaining, Depression, Acceptance (DABDA) – the five stages of grief - are all part of the MS puzzle. Don’t get caught up in self-pity. The fact that you have MS is not your fault. MS and its’ quirks are but a throw of life’s dice but how you react is down to you.

Denial played a role in my early MS-years, especially when so many well-intentioned people told me that the doctors were wrong. For 10 years, I was like a drowning man, clutching at straws, but deep down I knew that there was no mistake, so my MS confirmation in 1998 came as no surprise and provided some relief as I now knew definitely what the problem was. I was now able to move on with my life and chart a course for the future. I learned to be flexible and adaptable in the development of my plan – because I had to be.

Lies, fairy tales and sugar-coating have no place in the lives of People with MS (PwMS) but, as there is no absolute truth concerning MS, and the fact that everyone’s MS is different, with no pre-destined pathway, means that we need to learn to deal with it in our own way and in our own time. We need to learn our own equilibrium. Talking to others will help, particularly those who are traveling a similar path. It’s good to talk and listen. Be cautious when talking to those well-meaning, well-intentioned, people who offer advice, often unsolicited, on diet or miracle cures; those who suggest that you are not doing enough to help yourself and absolutely not that person whose aunt's neighbor's friend had MS and cured it by.............

When I was first diagnosed in 1988, exercise was frowned upon for PwMS so I didn’t exercise; this advice changed after a number of years and so did I. I started exercising regularly and still do; exercise is important both mentally and physically. Don’t be afraid to change your plan when new evidence and reliable advice becomes available. I firmly believe that having a balanced life will always remain a part of the MS puzzle.

The saying 'use it or lose it' is not entirely true, but it is certainly easier to keep something working than to rejuvenate it after it stops and sometimes there is no getting it to work again with MS. A more recent and less-used phrase ‘use it to improve it’ is also not entirely true but even small improvements can make big differences. I have adopted both mantras in equal measure and I believe they have helped me avoid the major potholes on my personal MS highway.

I have found that it is when I least feel like exercising that I need it most. It gives me a boost and helps me get back on track. I try not to be too hard on myself but I know that I am my own harshest critic and I have to admit that try as I might I am unable to correct this flaw. However, on some of my not-so-good days, I do give myself credit for a good honest effort, even if it wasn't quite good enough. Something is better than nothing. Don’t forget, mental exercise is every bit as important as physical exercise.

While I was late to exercise, I was a never a sloth. Even when exercise wasn’t recommended for PwMS, I had always tried to maintain a minimum level of physical fitness, while work and college kept my mental fitness at a good level. I retired in 2010/11 for quality of life reasons, but I kept a gym membership and worked on mental sharpness using online apps. I honestly believe that both forms of exercise have benefitted me immensely. They have contributed to my physical and mental wellbeing and helped me reach that happy place where equilibrium reigns supreme.

How did I find balance in my life? This is not an easy question to answer and I’m not really sure that I can; it sort of just happened. I wasn’t really in the denial phase for the initial period after my diagnosis, but instead, when the confirmation came after 10 years, any residual bit of deniability was washed away and I knew that, for my own sake as well as that of my family, I had to be tough and face reality. Slowly, I began to accept my physical limitations. Slowly, I began to accept help. Slowly, I allowed Assistive Technology into my world. Slowly, I learned to set aside a bit of ‘me-time’ every day. Slowly, I learned how to switch off. Everything was happening slowly. When I had completed my 2nd law degree in 2005 I realized that I had achieved so little and yet so much. I was finally at peace with myself. I was in my happy place.

To hear more about Declan’s MS journey, read here.

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