Being a parent is hard enough, but have you ever stopped to think what the struggle of being a parent with Multiple Sclerosis is like? Today marks World MS Day, and to help us understand more about life as a parent with MS, I’m in conversation with Patricia Gachagan, author of Born Together, who shares her determination to overcome the challenges to live a full life and to be a mother to her son, Elliot.
Can you tell us a little bit about your situation and diagnosis?
I suddenly became very unwell after the birth of my son Elliot. My health and ability deteriorated rapidly. The doctors couldn’t find an explanation and so they began a series of tests. When Elliot was nine months old, and it was a long, hard nine months of adversity and fear, I was diagnosed with Multiple Sclerosis. That was some eleven years ago now and although the goal posts for motherhood and family life were dramatically changed we have learned over the years to adapt and rebuild a different, but still happy and positive family life.
What were you initial thoughts about managing parenthood with MS?
There is no other way to put it than I was absolutely terrified to begin with. I had so many questions with so few answers at the time. The future with Multiple Sclerosis and motherhood was unknown. However, it was not long until I set myself out to be absolutely determined that we would find a way to manage and that Elliot’s life would not be negatively affected.
Being a parent is tough enough as it is….what sort of specific challenges does parenting with MS throw into the mix?
There are many different things that can effect my ability to parent and manage. MS has an awful habit of changing, throwing up new things and it is very challenging to get consistency. But the main challenge is undoubtedly that of fatigue. Fatigue crosses over everything and can strike at any time. When Elliot was a toddler that was by far the most difficult thing I had to manage. It has got easier as Elliot has got older, but I am still left with a feeling of ‘letting him down’ when my body literally has nothing left in the tank.
The other main challenge is that of my walking and being able to go places with Elliot and to watch him take part as he grows older. I do manage as best as I can and usually with determination, a supportive arm to lean on and not caring what anyone else thinks of how I walk(wobble)!
What keeps you going through the hardest days of parenting with MS?
Without any doubt at all the answer to that is my wonderful son Elliot. He is a joy to be around and inspires me all the time. Despite Multiple Sclerosis doing its best to spoil things, it hasn’t succeeded. I feel very grateful and blessed that I became a mum and all the special, precious things I have been privileged enough to experience with Elliot in our small family since.
How challenging is it to be the parent you want to be with MS?
I am a very determined person and always have been. I do not shy away from things or accept defeat easily, if ever. So, I very quickly adopted the attitude that I would adapt to my circumstances and find new ways to do old things. I do not see myself as disabled in any way whatsoever. I see myself as ‘differently’ abled, but able nonetheless. So, as a mum and as a small family we adapted and overcame the barriers MS presented. Elliot has been brought up to be resilient and adaptable. To see the solution and head towards it. We do thing differently, but we still do them. The challenges are very real, but all parents and families experience some throughout family life. To me it is not all about what those challenges are, but about how you get up, get on and deal with them.
What sort of support did you/do you receive as a parent with MS?
My husband is a tower of strength and support. He is super able to organise and manage and does so much. I am also very lucky to have my sister and my mum, who have been selflessly committed to supporting me since Elliot was born. It is very much a family affair and I am privileged to be surrounded by the people I have in my life.
What is the biggest thing you have learnt in your journey as a parent with MS so far?
The biggest thing I have learned is to hold my head up high and not worry what anyone else thinks. To keep going forward and never give up as there is a positive, rewarding life out there, despite your adversity. You need to keep pushing forward and believe in yourself. I have learned that it is OK to do things differently and to teach Elliot to understand that and celebrate difference. See the positives and grab hold of them and don’t wait for things to change or get better. Seize that day and what you can do on that day.
What advice would you give to others in your situation?
That the future can be all right so stay positive. You may need to adapt and do things differently, but that is OK and you can still have a good quality of life with your child and family. You need to learn to accept your new self and the changes to your life. That is all part of a process and doesn’t happen overnight, but the sooner it does happen, the better it is for yourself and those around you.
You need to adapt to those changes, but stay very much focused on what you can do and not hold on to the past and what you can’t do anymore. Try to see it as a new beginning and not an ending and take charge of your own health. I am very pro-active in managing my MS and that has been a defining fact in my new abilities and creating a different quality of life, but still one that is enriched and fulfilling.
Anything else you would like to add?
I would add that in order to be able to manage motherhood and family life the way I have done, I have had to make big changes through my self-help plan. The backbone of that is my diet and exercise. I have been very disciplined and worked hard to support my body to work better. I have written my debut book, Born Together, published on 28th May which shares my journey and all the things I have done to manage Multiple Sclerosis, motherhood and shares my positive perspective on life with a chronic disease.
Picture credit: Courtesy of http://www.activemsers.org/