myaware

My name is Lisa and I want to speak out and spread the word about myasthenia and my journey.

My life before myasthenia was a very happy one. I enjoyed socialising and having fun.

I was always the last to leave a party and went on lots of holidays. When I became a mother, I was absolutely loving my life. I had a career in the city, worked part time and I thought I had it all and completely the right balance.

My main symptoms started with my eyesight changing, I kept getting double vision and couldn’t focus properly, then weakness began in my whole body, mostly my legs and extreme fatigue. Then in 2009 my world completely changed when I collapsed in a supermarket car park whilst I was with my 5-year-old daughter, she was petrified. This I now know was my first myasthenic crisis.

My life and I was never the same after this.

It took until 2017 for me to be diagnosed with myasthenia, and in the years before diagnosis I was repeatedly collapsing, I couldn’t get of bed, I had breathing difficulties and had to call ambulances on many occasions. I became known locally as the collapsing woman, it would happen in supermarkets, shops, train stations. Strangers would have to carry me to my car as I knew that once I had rested for 30 minutes I could attempt to move again. I couldn’t take my children to the park on my own through fear of collapsing and I was in bed most nights by 6pm. By now my speech was also affected and so was eating and swallowing food, I almost choked so many times I had to learn what foods to avoid.

I lost friendships as I didn’t know what was wrong with me and I couldn’t explain that I was too weak to go to social occasions, I stopped going out and didn’t turn up to parties – a lot of people just didn’t understand what I was going through.

It was a chance conversation with a doctor (who was not a neurologist) who attended my local church who asked me if I had heard of myasthenia (which I hadn’t!) and suggested that I should go and see a Neurologist. During these years I had already paid to see four Neurologists and had been prescribed anti-psychotic medicines and referred to a neuropsychiatrist which added to my struggles when I wasn’t demonstrating or complaining ever of any depression or mental health problems.

I had lost years of my life, my career, my kids lost their mum, and I was insulted so many times and told it was ‘in my head’.

I knew that there was something physically wrong with me and I had to fight this battle. Finally, I was diagnosed, and it was a relief to know what was wrong with me, but during the first year I was diagnosed I was in hospital for two months, it was a fight for the Neurologist to get me back to a stable enough condition to go home. And after getting home it was then a very tough journey of taking steroids, being in a wheelchair, being housebound and dealing with the side effects of my medication. Since being diagnosed I have had IVIG treatment 15 times, which gives me a lease of life, but I am still on a tough journey. The support I have received from myaware has meant so much to me and I have met two very good friends who have helped me so much.

I am blessed to be alive and being part of the myasthenia community has prevented me from being lost and alone in a world where no one understands the complexity of myasthenia.

Myaware receive no government or NHS funding and rely on donations and gifts to support their work.