I was diagnosed with limb girdle muscular dystrophy (LGMD) at 20, when it became apparent my left calf muscle had wasted. At the same time, my mum was diagnosed with LGMD, having been mis-diagnosed many years before. There was initially little impact on my life. I backpacked around India with friends and lived a full life at university.
My condition now affects every day of my life. My mobility is significantly impaired. I can still walk without aid around my own home – furniture- and wall-surfing is my mode of transport! Outside of the home, I am more restricted, although deeply thankful that I am able to drive an automatic car. For short distances, I use a rolator, and occasionally crutches where steps are involved. For longer distances, I need my mobility scooter (affectionately named, ‘Brian’) or someone to push me in a manual wheelchair.
My life revolves around thinking about and managing access everywhere I go. I do struggle with persistent pain, particularly in my neck and shoulders. My energy levels are well below normal and have been for a long time.
It is a cycle, which ebbs and flows like the ocean
It’s an ever-changing process of grief and loss. The emotional impact of having lived with this condition for half of my life is now immense. It’s a life-long, ongoing, ever-changing process of grief and loss. All the emotions associated with grief are involved in learning to live with it – shock, sadness, anger, fear, depression, acceptance. It is a cycle, which ebbs and flows like the ocean.
The impact on my family is massive too. It’s hard to watch a loved one suffer and struggle, and be powerless to change that. My husband knew when he married me 15 years ago that I had this disease and what it might mean. My son knows his mummy is different to other mums, and that there are lot of things that mummy can’t do. It’s hard. And it matters.
When I realised that my intrusive, daily, thoughts of ‘I can’t manage’, ‘I can’t do it’, ‘I can’t cope’, and ‘this is too hard’ were beginning to impinge on my mental wellbeing, I reached out specifically for help with a low- dose antidepressant from my GP.
For me, this medication helps me manage living with loss on a daily basis. It’s not for everyone but it’s helped me a lot.
Allow the grief to take place
I have also had a few seasons of counselling, which I have found invaluable and totally validating. After all, when we lose someone we love, we wouldn’t hesitate to consider having grief counselling. So why should the loss of muscle function and independence be any different?
The shock of a new diagnosis is never easy; it’s important to treat yourself as you would a best friend. Expect to feel completely overwhelmed and allow yourself the space you need to process the grief you feel and are likely to continue to feel.
I’ve found that the best possible way to cope and learn to live with this disease is allowing the grief process to take place.
It’s painful and challenging, but it helps me to reach a sense of acceptance and in that, a fullness of life.
It helps to be around people who are empathic, friends and family who, rather than jumping in with ‘positive thinking’ mantras or desperation to fix things, are able to say, like Alice in Wonderland, ‘When you can’t look on the bright side, I will sit with you in the dark’.
I also manage my condition by swimming at least three times a week, having chiropractic for my neck pain, and acupuncture to target and strengthen my immune system.
My faith also sustains me, along with the associated practices of mindfulness, meditation, prayer and contemplation. Having a local and global community of ‘soul friends’, good friends and the support of my family are also invaluable to me. I qualified as a counsellor in 2008, and since returning to the UK in 2015, I’ve taken the bold step of setting up a private practice.
I love that I’m able to make a difference in the lives of my clients
I launched a counselling business, which functions 100 percent online, via video call, and business is thriving!
I love what I do and I love that I am able to make a difference in the lives of my clients. I offer
55-minute sessions and try to see about two to three clients per day. I’m fortunate that I can do my entire job from one room and yet meet with people from all over the world at the press of a button. It’s the ideal job for someone with a significant, life-limiting disability! And it gives me such a sense of purpose.
Over the last few years, I have seen and continue to see several clients with disabilities, or their family members or carers. For the sessions, all the client needs is a private, uninterrupted time and space with a decent internet connection. No need to struggle out to yet another appointment, they can have a session from the comfort of their own home. There’s also no power imbalance in terms of coming into another person’s ‘space’.
Before I began working in this way, I was anxious that it would be harder to build a real relationship with my clients, something that is very important to the counselling process. But quite the opposite: clients often feel empowered to be open and honest and the relationship goes deep and with real feeling in a way that I didn’t necessarily expect.
This is a journey of loss
I’m fully behind MDUK’s Mental Health Matters campaign. In my opinion, the key for psychological support must be to recognise that for many people with muscle-wasting conditions – regardless of the circumstances – this is a journey of loss. Loss of muscle. Loss of independence. Loss of dreams for the future. Potentially even, loss of the future. Loss of a loved one. Loss of function. Loss of possibility. Loss of financial security in many cases. I believe grief has to be at the centre and forefront of any treatment.
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