I’m Amy, I’m 40 and was diagnosed with myasthenia in 2004. It was well controlled by Mestinon. I worked full time until I had my first child in 2012. I had remission of symptoms during pregnancy, until 2014 when I had general anaesthetic that saw the return of mild symptoms.

In 2015 I had a miscarriage which seems to have triggered the severity of my current symptoms. In 2016 I became pregnant with my second child and my symptoms worsened throughout.

The thing I struggle with most is mobility issues. I trip when I walk, so use a wheelchair and I’ve become clumsy, regularly dropping things. I fall down the stairs and struggle to wash my hair. Fatigue leaves me unable to do everyday tasks, like shopping and housework. I’m very blessed to have a wonderful support network of family and friends that help me ‘keep house’, with shopping and help me with my children.

The main thing to learn when you have myasthenia is you need to rest. It’s not like being tired, where sleep refreshes you. Fatigue can bring on a rapid decline in symptoms, so learn to say ‘no’ and take time each day to recover from activities.