I'm Lucy and I'm 33 years young.

I was diagnosed with myasthenia at the age of 14. My mum thought that with my droopy eyelids I was just being a troubled teenager and giving her 'evils'. It wasn't until I kept falling down on the way to school or up to lessons when using the stairs that we noticed there was an issue. Then when I fell backwards down the stairs, she knew something wasn't quite right. I was taken to A&E and luckily enough was seen by a doctor who thought he knew what it was. From there I met the wonderful David Hilton-Jones whom I was lucky enough to be under the care of ever since, this was when my MG journey began.

In June 2000 I underwent a thymectomy which they did through my sternum as I had a thymoma. For a couple of years my symptoms were controlled with just pyridostigmine and I was able to have a "normal" teenage life. This was until steroids were introduced when I was 17, and I've been on them ever since. I have a love hate relationship with them as I know without them I wouldn't be as I am along with all the other medications and therapies I've been under.

I had my first real crisis when I was 20 as I contracted pneumonia, although doctors did not listen to me when I said I couldn't breath, I was just told I was having panic attacks. It wasn't until I had a respiratory type 2 arrest and ended up in intensive care with a tracheostomy over Christmas and new year.

I've had a fair few admissions for IVIG and plasma exchange and I've also had rituximab twice now, once in 2015 and again in 2017.

I am a mother to a 5-year-old boy. Throughout pregnancy my symptoms were well controlled, I even managed the natural glow they all talk about! However, after he was born I was very unstable. My symptoms were very problematic and hard to manage. My myasthenia has always been a very resistant form and has constantly proved this through the last five years. Some of the toughest and hardest parts from not being able to pick up my own baby to being in neurology ICU for four months, ending up with my 2nd tracheostomy. Not being able to talk to my son was horrendous. Although we made it work, he would sit with me on the bed and we would watch some electronic device and that was our time together, everything else in that moment didn't matter but us.

Thankfully for us we are surrounded by a great network of family and friends who truly understand the impacts MG has on me on a daily basis. Saying no is really OK and if the support is around you, they will truly understand. Also asking for help, it's the best thing you can do as struggling gets you nowhere.