Self-Advocacy Story: Tania Brooks All I ask is that they listen! I was working full-time as a Funeral Director when COVID-19 started. The number of deaths was beyond anything I’d ever dealt with. That December me and my daughter had Covid. The following January my left eyelid suddenly closed late one Sunday evening. Thinking it was tiredness, I went to bed early and removed my false eyelashes in case that was the cause. I began to feel slightly better, but the next week was terrible. I had no sympathy from my employer despite trying to explain how I felt. I was expected to carry on as normal, and I had no idea why I was starting to feel unwell. The next week was even worse, my right eyelid started to droop, and I resorted to taping my eyelids open. I had no idea what was happening to me, so I decided to go to opticians to get my eyes checked, where I was told my eyes were healthy; they had no idea what was happening. I knew something wasn’t right, so I insisted they send me to the eye hospital as an emergency, my first bit of self-advocacy. For the next two weeks I was anxious, stressed and worried about what was happening to me. I tried hot & cold compresses on my eyes, which alleviated some symptoms very briefly. I looked like I had two black eyes, from constantly taping my eyelids open. I was then seen by eye consultant at the hospital. I told him my story, and he said straight away, you have Ocular Myasthenia Gravis. I asked him to write it down, as I’d never heard of this before. I’m grateful that everything happened very quickly after that. I was sent for a blood test, and had a full eye examination, and I was first given pyridostigmine and my eyelids started to open. It felt like a miracle! The blood test came back positive. I was directed to myaware by my Neurologist, which was an absolute lifeline. I read up on OMG and I continued to take my meds. Long-term sick leave I went on long-term sick leave from work, which was no loss as they thought I was making up this disease. The fatigue, breathlessness and dizziness came along with deep depression and stress. I felt the lack of support from my employer contributed to this, along with going from running a full and busy life to just sitting pondering and wondering how I could pay the mortgage and bills. Later that year I ended up in hospital for a week due to going into a crisis and having pneumonia. Advocating for myself was essential due to the lack of understanding from the paramedics and the staff in A&E. Paramedics concluded I was having a bad reaction to the covid vaccine which was incorrect. The resus lead didn’t think I was an ‘emergency’. Thank goodness a nurse saw me in distress and listened to me as I was drowning in my own phlegm - it was then all systems go. I needed to be tube fed and I was given a rescue dose of IVIg and put on oxygen - it felt like a miracle! It was then confirmed that I had pneumonia and that my Ocular Myasthenia had progressed to Generalised Myasthenia Gravis. I had great support from my mum, my partner and my best friend, I don’t know if I’d have got through it without their support. I still struggle physically with how my body seems to be alien to me and I can only get through a day with a handful of pills. I am still learning so much about MG through myaware and support groups. I always tell medical professionals I have Myasthenia Gravis – all I ask is that they listen! Tania Brooks Manage Cookie Preferences