170/365 – The beginning of my myasthenia journey

This weekend, while doing some de-cluttering, I came across some of the original letters I received from Moorfields. The one below was sent not long after my first panic-stricken visit to London’s eye hospital. Seeing it brought back memories that I haven’t shared with you – the first flirtatious with myasthenia (although I didn’t know it at the time).  


So I was working late again as I had done on many Friday evenings since moving to the capital. Packing up my things too late to really make much of the night, I went to change into running clothes for the trip home. It was then that I noticed there were two of me in the mirror. Or not two so much as two half versions piled on top of the other (like the image of Steve Buscemi below). Even if I had seen this four eyed version of Steve Buscemi in the mirror behind me, I doubt I would have panicked as much as I did.

Relax, I thought, it’s probably just from straining – It’s been a long week. Run home and see how it is then. I picked up my things as quickly as I could and busted out of there – in a sprint before I had left the building then realising I had forgotten the office alarm.

Pounding the pavement. Closing one eye and another to see the world back in single vision. My eyes tiring from the strain of being forced shut – who knew you could work out your eyelids to failing point. 

Getting in and trying to tilt my head in different ways to see a singular world again. Hiding it, adapting myself, being sure that it would pass.

By Sunday it had not passed and I was scared. I spoke to Elaine about it after the film we had been watching , Great and Powerful Oz. The 3D glasses had been a perfect cover for me having to shut one eye to experience the film as it was made to be seen. But I knew something was wrong. She phoned her optician friend and the next day I sat in Moorfields awaiting my fate. I had really overdone it this time.

My fate that day was a lot of tests – blood tests, vision tests, reflex tests and even a brain scan. The numerous doctors and nurses I saw passed me on without care – eventually I was shown to a room where a specialist fitted a prism in my glasses to rectify my vision. It worked a little but made me feel like Deirdre Barlow (God rest her soul). Worse of all this person was cold – I felt like a hindrance. Why couldn’t I just be an easy fix? For the first time, of many to come, I broke down in Elaine’s arms. 

That day left me with only the knowledge that I had palsy on my sixth nerve on the left side of my left eye. 

I went back a couple of times to Moorfields over the coming weeks, but they had no answers. I was told the nerve palsy would likely disappear within two weeks and it did. I was so thankful for that promise coming true – so relieved that I was back to normal – that I ignored the mild double vision over the coming months. 

It wasn’t until September that my double vision came back full swing and I knew what to do. I was seen at Moorfields almost straight away and told I had myasthenia gravis for the first time. In fact I could have found out in April except they sent the letter to the wrong address and I wasn’t registered with a doctor at the time. 

I’ll go more into the exact details of the night I found out about myasthenia soon but something inside me knew my life would never be the same again. I adapted, as we are born to do, but I also feel like I will re-live those two separate moments for the rest of my life. 

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