After being diagnosed with limb-girdle muscular dystrophy 2a in my mid-20s, life changed for me pretty quickly. I can honestly say, for most of these last 10 years I have been grieving in some way for the future I thought I would have, and for the present that I thought would be so different to my reality.
I went through a period of depression after my late diagnosis. It felt like a quick transition to using a powerchair all the time and I felt I just couldn't keep up physically and emotionally. I was a young mum of two at the time and had to give up my job in neurorehabilitation.
I feared I wouldn’t be enough for my children and my family. I lost the ability to walk around the time of diagnosis and spent a lot of time trying to gauge what I could and couldn't do. Pain and fatigue, alongside weakness are huge parts of how the condition manifests for me and, like a lot of people, it can affect your self-esteem and confidence inside and out.
Adapting to life after my late diagnosis
I'm now 38 and I have done so much I thought I would ever do since being told I had muscular dystrophy! Sure, the path is different from the one I thought I would have, but it has been a rewarding one even with the challenges of a progressive disease. I have learned to find and embrace what I can do while dealing with the difficulties.
Instead of grieving for a life in nursing, I took up photography, writing, dabbled in abstract art, wrote a book about creative therapy and started to study to become a therapist to help others who might be struggling with elements of their own neuromuscular conditions. Now, working as a therapist has led me to be able to help more and more people to live a life that is valuable to them.
Having muscular dystrophy is a daily battle, but being part of a supportive community, meeting other people and families who live with a condition, has enabled us all to find strength in each other and find the hidden strengths within ourselves.
Over time I have learnt some key lessons
Finding new ways and approaches is an ongoing theme and a necessity with progressive conditions like muscular dystrophy. Knowing it is OK to struggle, it is OK to grieve, that it is fundamental for growth and harnessed in the right way helps people move forward towards a life that matters, regardless of the challenges faced.
I feel privileged to be in a position where I can help other people on their own personal journeys. It's a strange thing to say after 10 years of living with the disease, but although muscular dystrophy has weakened my body and thrown a lot of curve balls, it has made me find and seek out my own inner strength in more ways than before.
Super sportswear that is for everyone
I was honoured to be a part of the collaboration between Muscular Dystrophy UK and Tikiboo , a sportswear brand which has worked with the charity to create the colourful and exciting muscular dystrophy themed activewear i'm modelling. Having been through a lot of physical changes recently, I am super excited to represent that sportswear is for everyone regardless of ability, size, or shape, especially when it is as comfortable as Tikiboo’s range!
Nobody should feel excluded from doing the activities they love, and so there needs to be more representation in these spaces of people who live with muscle-wasting conditions or use mobility aids.
Highlighting the awareness of muscular dystrophy via #MusclesMatter is such an amazing achievement for the cause, and this will only do more for the millions of people who live with these conditions every day. Muscular Dystrophy UK receives a portion of the profit from each sale in this partnership, bringing in even more vital fundraising to help improve the lives of people living with muscle-wasting conditions.
Explore the range at Tikiboo and buy an item to add a pop of colour to your workouts and raise vital funds for Muscular Dystrophy UK at the same time.
If you are looking for a sense of community or connection, you can register to be a part of Muscular Dystrophy UK’s Peer Support scheme, come along to one of our virtual or in-person Muscle Group meetings, or look for an online Facebook community.