It all began 23rd September 2011. I will never forget. That was the day my life changed forever.
To begin with, I didn’t realise what an impact MS would have on my life. I wasn’t in denial but I avoided the severity of the diagnosis and brushed aside other peoples concern and fright at the news.
Looking back, I can’t remember being that person before diagnosis. I worked all hours believing success was achieved through hard work and money. I also put my body and mind under a lot of pressure at the gym by working out incessantly and being very strict about what I thought was a good eating “plan”. In short, I was under pressure, pressure I put on myself. It was 100% or not at all.
The MS forced me to put the breaks on. Prioritise my life and figure out what is really important. It was a long, hard journey but I made myself face the truth and accept the new hand I have been dealt. Easier said than done. I was frustrated, afraid, angry and depressed. I had to change my mind set. I did a lot of research into MS were I armed myself with knowledge. I sought advice from professionals and loved ones. I spent a lot of time with my thoughts, feeling and trying to rationalise the situation. I felt like I had to start all over again. It didn’t seem fair. Why me? But in reflection, I got a second chance. I got to place my life in balance.
I volunteer where I can to feed my soul and give me purpose. I am grateful for even the smallest thing and I have had to learn to “let it go” and enjoy life and be happy with myself. When I was diagnosed I had an overwhelming feeling of hopelessness. Volunteering has helped me find purpose. Rather than focussing on what I can’t do, I focus on what I can and to how I can be useful to the team I am helping. Volunteering has taken my focus away from me and made me realise I am still useful and can still make a contribution.
My support circle has been instrumental. This circle is as varied as the disease. I include my Neurologist, my MS nurse, my family, my partner, my friends and even my cat is a little ball of reassurance. I have realised managing MS is a team effort and you need to be able to reach out for support.
What I find most frustrating about having MS is that it is not helpful to compare yourself with other people who have MS. So in this way it is difficult to prepare for the future. You have no idea what to expect. But this is fear!
So my fear is embedded in the unknown. I suppose everyone’s futures is unpredictable. But having an incurable disease puts a different spin on things.
I really try live I the moment. Because right now, today, is a good day. I have no pain, I can see, walking is not too much of a battle and I get to take my daily afternoon nap to recharge. In essence, I actually have nothing to worry about.
I have tried to not let the MS define me but it is difficult to not be completely preoccupied but the disease, its limitations and the constant reminders. But my partner has said time and again, she does not think of me as a sick person. People see me and I am often met with the response of “but you don’t look sick”. These are small but very necessary motivations I need to keep fighting and keep positive and not let my fears get the better of me.
MS has not made me become a new person but rather awaken a part of me that was subdued due to social expectations. I wish I had learnt theses lessons long ago and it is unfortunate it takes a dreaded diagnosis to make me appreciate what we have to gain from helping others.
It is early days for me and I will do what I can, while I can.
This is a bit cheesy but I want to end off with a appropriate quote:
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
I look MS in the face everyday. I take everyday as it comes .I don’t want to be afraid anymore. I must be brave.