Alexandra's Journey My journey with myasthenia started in Wales while I was on holiday this summer. We arrivedlate on a Monday afternoon at the end of July, just as the sun was going down over thehorizon. I made myself a cup of tea and sat down outside to enjoy the view across therolling, green hills towards the cliffs. As I gazed across to the shoreline, it felt like I couldn’tquite focus on the view but I shrugged it off as weariness after the long drive from London. However, the following day I noticed that my eyelids weren’t opening as normal, and the dayafter that, while jogging along the Pembrokeshire Coastal Path, everything looked a bitstrange - as if I had developed a squint overnight. I rang a local optician who was concernedthat I might have had a mini-stroke and recommended I go to A&E. I thought that that was a bit extreme as I’m not yet 40, exercise regularly and am generally in very good health. Butafter checking with NHS 111, I asked my husband to drive me to Withybush Hospital. I amincredibly thankful to Dr Zion in A&E who, after checking my vitals, said that he thought that Ihad something called myasthenia gravis (which he obviously had to write down for me - Ihad never heard of it!). As my husband drove us home, I googled myasthenia and laughed -I could never have that! Over the last 4 months and after various tests and medications, thediagnosis of myasthenia gravis has now been officially confirmed. The past 4 months have been incredibly challenging and frustrating, and at the same time,humbling and revealing. Before now, I have been fortunate enough to never have been moreill than having the odd cold. My journey with myasthenia has shown me the challenges thatso many people face navigating the NHS, getting the right support and advocating forthemselves or those that they care about. Before my symptoms were under control (with thehelp of steroids, changing my diet, prioritising rest and changing my work patterns) I found itembarrassing and difficult to walk outside, go shopping and do the school run, as I struggledto see properly, and felt incredibly vulnerable and self-conscious. I discovered that much ofour culture is built on frenetic activity, people rushing past each other and the valuing ofproductivity above connection and humanity. I have realised how isolating and ‘othering’ this way of life can be. I am trying to be more aware of those around me who feel like they are excluded from society because of their struggles, disabilities or chronic health conditions. I am also learning to slow down, to give myself more time to do things, and to try to be more present in my home relationships and work commitments. I discovered Myaware shortly after my initial diagnosis in A&E and I am incredibly thankful for the work that this amazing charity does. I have found support and wisdom through the Facebook group, and I have also joined in with some of the Zoom learning and new membersessions. The information and friendship which is offered through Myaware is invaluable -both for those newly diagnosed like me, and I believe for those who have been travelling thisroad for a long time. Thank you Myaware team - keep up the fantastic work! Alexandra EllishDecember 2021 Read more stories Manage Cookie Preferences