My journey with myasthenia started in Wales while I was on holiday this summer. We arrived
late on a Monday afternoon at the end of July, just as the sun was going down over the
horizon. I made myself a cup of tea and sat down outside to enjoy the view across the
rolling, green hills towards the cliffs. As I gazed across to the shoreline, it felt like I couldn’t
quite 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 day
after that, while jogging along the Pembrokeshire Coastal Path, everything looked a bit
strange - as if I had developed a squint overnight. I rang a local optician who was concerned
that 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. But
after checking with NHS 111, I asked my husband to drive me to Withybush Hospital. I am
incredibly thankful to Dr Zion in A&E who, after checking my vitals, said that he thought that I
had something called myasthenia gravis (which he obviously had to write down for me - I
had 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, the
diagnosis 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 more
ill than having the odd cold. My journey with myasthenia has shown me the challenges that
so many people face navigating the NHS, getting the right support and advocating for
themselves or those that they care about. Before my symptoms were under control (with the
help of steroids, changing my diet, prioritising rest and changing my work patterns) I found it
embarrassing and difficult to walk outside, go shopping and do the school run, as I struggled
to see properly, and felt incredibly vulnerable and self-conscious. I discovered that much of
our culture is built on frenetic activity, people rushing past each other and the valuing of
productivity 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 member

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 this
road for a long time. Thank you Myaware team - keep up the fantastic work!

Alexandra Ellish
December 2021

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