251/365 – Two years of myasthenia diagnosis

Yesterday I got an email from Justgiving saying it had been two years since I took part in the Kiltwalk with my good friend Michelle. I did the marathon-length walk while still shell shocked after receiving my diagnosis of myasthenia. Each of the 26 miles felt significant as I battled with double vision and creeping grief.

I returned to Moorfields eye hospital when my double vision had returned to be told that I’d been diagnosed with MG in April. As mentioned previously, the original diagnosis had been sent to the wrong address. 

Everything got loud for a while after that. I remember the external facade of being in control; inside I couldn’t think straight and I couldn’t quieten my mind. I couldn’t find a perspective that agreed with my positive outlook on life. And there were seemingly endless questions. Plus, for someone who never got beyond standard grade/GCSE chemistry, the scientific nature of the information online about myasthenia was overwhelming. I couldn’t make sense of what it meant for me. 

In spite of how recently I’d received the diagnosis and the fact that my double vision was affecting me heavily at the time, I was determined to do this marathon length walk I had planned. It was my first battle against myasthenia and, for my confidence, I knew it was important to win. 

While I didn’t have the generalised weakness then, my sleeping hadn’t been great since the diagnosis and I had started smoking again as a ‘fuck you’ body gesture. Quickly I realised completing the walk was going to be difficult. But Michelle’s positive chat and the rare gorgeous weather kept me plodding on. 

For the last few miles I was in a lot of knee pain and could only focus on putting one foot in front of the other. I have never been as happy to see a finish line, and Michelle’s lovely other half Stewart, in my life – to this day it’s still the hardest thing I’ve done. 

It was in the glamorous location of the finish line portaloo that I finally cracked – while I had a reserved, reactionary cry on the evening I had heard myasthenia for the first time, the tears flooded from me suddenly and relentlessly in the little blue box. So many thoughts had come and gone during the miles I had covered but none of them had stopped me. I was strong and stubborn and I could still be free. I could still be me.

2 thoughts on “251/365 – Two years of myasthenia diagnosis”

  1. Hi my name is colton.
    My girlfriend was diagnosed with MG almost 10 years ago, she was not informed abought the thymectomy Intel abought 2.5 monthes ago she had the procedure about 2 monthes ago. Her antibodies were almost to 900. She got the transsternal procedure she has made great improvement this far but had couple questions. And it would be amazing if you would be willing to email us.
    Here are few questions/concerns (cait) is having. Sorry for the questions we have never met another MG patient expecially one that has had the transsternal thymectomy procedure.

    #1 she gets sharp pains every once in a while in her chest and was wondering if Thoes will go away.
    #2 her double vision has seemed to happen more often. But here drooping and strength in her muscles are doing great with the occasional bad day. Have you had bad double vision and if so does it get better.
    #3 she is struggling with the scar it was lots bigger than she thought and it’s bugging her. It’s bright pink and she is wondering if it will go to normal color. And was wondering if you could send pic of your scar progress it’s affecting her really bad.
    Sorry for all the q we have never met another MG patient, specially one that has gone through the same transsternal thymectomy. We would really like to have a conversation with you.
    Thanks colton and Caitlin
    P.S hope things are going well.
    Please give me email back

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