The next few days (24th-30th April) mark Multiple Sclerosis Awareness Week and as I have been living with the condition for a long time now, I’d like to talk about it and share my thoughts, my experience and my feelings in order for you to understand me a little better.
For anyone who hasn’t come across it before, Multiple Sclerosis (MS) is a chronic autoimmune disease that damages the nervous system, attacking the protective covering (Myelin) that insulates the communication network of your nerve fibres.
As your nerves are a crucial connectivity path for actions throughout the body, the symptoms can include aspects such as muscle weakness, fatigue and coordination problems, balance, vision or cognitive impairment and many more embarrassing ones, believe me. The severity and progression of MS can vary greatly between individuals, and there is currently no cure for the disease.
MS and Me
To list symptoms outright doesn’t quite cover the sensations of it all. When we are born we exist in a state without control. We are excitable, mouldable little pieces of potential, craving the next experience, emotion or lesson to gather the creative skills to paint the picture of what a future self will be. As we grow older our ‘sense of control’ increases, we are in charge of our own futures and we have the personal capabilities to affect change, as we see fit. It is this sense of control and a certain sense of loss of it, that can be one of the biggest challenges.
When I was 24 I started to experience strange sensations. I had recently moved to a new city and was at an age where I would look at life as if it was an expansive menu with a multitude of delicate dishes in which to sample. I naively thought that it would be a great idea to ‘pursue a career in music’ (whatever that meant), but even working a temp job, while spending evenings with friends and exploring a new location, was enriching enough for the meantime. It was on my walk to work one morning, that I noticed that something unusual began to happen.
As I was walking along the cobble streets, my left foot would seem to drag slightly as if a left shoe was substantially heavier than the right, or I simply had underestimated the height of a step or curbside. This began causing occasional trip-ups and despite it being a spring day, I would feel a slight lack of sensation in my left hand, almost as if I’d been out in cold weather for too long. This progressed further to the point that other people noticed a slight limp and commented on it. Despite my family’s suggestions of me “not buying adequate shoes” (who said Van’s are not adequate?), I began to feel that this was not something I could dismiss and should visit a doctor to explore further. After a number of weeks of inconclusive GP conversations and referrals, I managed to see a neurologist and….. nothing. As it had been quite a while since first encountering any issues, it had seemed to clear up by itself before the significant appointment, leading to the neurologist’s response to ‘monitor any change’ and get back to him.
About 10 months later, the symptoms began to appear once again but were exacerbated this time, causing me great anxiety. Due to having been seen almost a year before by the neurologist previously, it was difficult to be seen again promptly, especially within a timeframe time that could have provided reassurance. After several weeks of trying to understand what was happening and numerous sessions of large needles*, prods and scans there emerged an answer for me, I had MS. Despite having a form of resolution finally, it provided little comfort for the months of what seemed like degradation.
*anyone familiar with a Lumbar puncture will relate.
Painting the Picture
This had an impact on me that I struggle to articulate. At a pivotal age in which you are establishing the foundations of your adult life, I began to feel more vulnerable than when I was a child. I not only had to navigate the numerous treatment plans but also try to maintain relationships, careers and social interactions, in a personal world that had changed dramatically, limiting me from the person I had been before.
As our nervous systems are connected to almost everything in the body, the area MS may affect cannot be easily predicted. MS by its nature can be infantilising. A limitation of any ability, be that physical or mental, can decrease your independence or trigger anxiety where it may not exist before.
I tried to hide it as much as possible, in both personal and professional capacities. After a negative experience at a job due to my health-related absences, I convinced myself that in order to have the kind of life that I wanted to build for myself, I would need to be very protective over what I would reveal. That may have worked for the first few years but due to the nature of the condition, it was not easy for long and became unavoidable.
My colleagues and I work in the incredibly fast-paced world of tech consultancy. A number of years before getting this role I may have naively thought that to be a Consultant meant ‘people-in-suits’ jumping in and out of the next corporate meeting room in which their working hours were as extensive as their own self-assurance. I am glad there has been a difference here.
2020 brought an unexpected time for us all. The Covid Pandemic forced numerous people into a life of remote working in which there was now a way to modify our work patterns. I saw a fascinating opportunity to ‘prove my contribution’ whilst still establishing some needed wind-down time in the evenings. Emerging into a world of flexible/hybrid working has been very much a welcome sight for me as it is important for me to manage my periods of rest. It has become a necessity for me when joining a new organisation, to get a sense of their level of understanding and acceptance. I know lots of people with any kinds of disability have a significant amount to contribute, however, for the sake of personal protection, it is vital that adjustments can be made in the workplace in order to properly manage or adjust to your condition. There have been many moments where I’ve had to step back from a social situation, not because I’ve wanted to or feel antisocial, but simply because I have to manage my personal situation more effectively.
A Bright Future
Through this story, however, I have always tried to maintain a positive outlook. MS has ironically been the inflammation of some of my life’s hardest challenges, but it has also been the fuel to my determination. Just in the way that we work in an Agile manner day-to-day, if a task seems too difficult for me in the immediate present, then I simply haven’t deconstructed it into an appropriate granularity of manageable chunks. If I can do that effectively, then there is plenty that I can still accomplish.
From a research point of view, there is even more reason for optimism. Recent studies have shown that the leading cause of Multiple Sclerosis may indeed be the Epstein-Barr Virus (EBV), a very common infection that is the cause of Glandular Fever. Thanks to the medical advancement in viral and immunisation development from the Covid-19 Pandemic, the EBV vaccine is currently in medical trials. Perhaps eliminating the risk of anyone else developing MS may happen very soon. This is also combined with numerous trials for remyelination; developing medicines to repair the neurological damage itself.
I have found this difficult to write overall as I’m somewhat of a sensitive person. This is often more than I typically share, especially in a professional sense, because I have been mindful of not making people feel uncomfortable with a potentially difficult topic or a depressing narrative. I’d be lying if I said I didn’t have dark moments because we all do to various degrees in our lives. However, I firmly believe that life’s measure is not in jumps that you may make, but in the manner in which you recover from the falls. It is for that reason that despite whatever happens, I will continue to try to help anyone, pick themselves up.
If you would to know more, check out the MS Awareness Week pages on both the MS Society and MS Trust to see all the stories shared and to donate if you so wish.