While my eyes are the most stubborn of my myasthenia symptoms, the one I have found hardest to deal with, so far, is the way my voice is affected.
It came on first in the departure lounge at Istanbul’s Ataturk airport in November 2013. Elaine and I had spent three days in Turkey’s capital touring the beautiful mosques, traipsing for miles along the Bosphorous to see the city walls built by emperor Constantine and eating as many authentic iskander kebabs as possible. Nursing a pint of Efes to soothe the onset of post-holiday blues, I suddenly realised that I was having difficultly forming words with ‘s’ in them.
Elaine looked at me curiously as I kept trying and failing to get ‘sorry’ out – but the ‘s’ sound just wouldn’t come out. First of all we laughed about it – being Scottish my go to reaction is usually self deprecation. But, I saw her trying to hide the panic in her eyes and I started to feel scared. That was the moment when I transitioned from ocular myasthenia gravis to full MG (This disappointed me massively as I had already come up with some jokes and blog ideas for the acronym OMG).
My right eye had been getting progressively worse since my diagnosis in September, but I didn’t have my first appointment with a consultant for over a month. Now I also had to contend with this out of the blue speech impediment.
During the flight back to London, I tested other letters and sounds that might be affected, but it seemed to only be ‘s’.
Over the next few weeks, I found it would come on when I was speaking for more than 10 seconds or so or almost right away when alcohol was involved. Speaking on the phone became a challenge, which was a nightmare in my line of work, and when I started to get the heavy feeling in my tongue that signalled it’s oncoming clumsiness, I did my best to try to end calls. My voice also started to take on a nasal quality – like I was pushing the sound of my words out through my nose rather than my mouth. And it became more high pitched. I wished at this point that I had paid more attention to the English language module at uni about parts of the mouth that form different sounds.
For a self confessed chatter box who works in the communication industry, no longer feeling like I could coherently express myself was devastating. No matter how comfortable people tried to make me feel, I hated not being able to meet friends for a pint, speak to my family on the phone or read the child I often babysit for bed time stories. Like panic attacks, the more I worried about it coming on the sooner my lisp and nasal voice made an appearance. Frankly, I stopped enjoying socialising which meant I stopped enjoying life.
I mention this in today’s post as, for the first time in about a year, my voice has become affected again. So far, it has only come on briefly and if I take a mestinon it stops for a while.
Last night was my work’s leaving do and it came on a few times over the course of the evening. Some of my work pals and I stayed over together, and this morning my voice was still changing sporadically. This is yet another thing to raise with my consultant on Monday – I’m hoping it is a side effect of being run down from the chest infection. No other possibility is being allowed to cross my mind right now.
Today’s photo is my lovely workmates and I last night. They gave me a wonderful send off, in spite of my vocal issues, and I know it won’t be the last fun we have together.