Tag Archives: Kilt Walk

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.

124/365 – Saying ‘I can’t’ because of myasthenia

Yesterday I took a notion that I want to run the London marathon next year for Myaware. The marathon length run is a challenge I’ve longed to take part in ever since I completed my first half four years ago. 

Three years ago I found walking the same distance agony due to my ruptured cruciate ligament, yet when I was walking that distance all I could think was how much easier running it would be. The eight hours down to four – the pain potentially worse but the recognition greater. 

However, when I was speaking it through with Elaine, the matter of whether I could complete it came up. Whether I would be putting myself in a lot of risk. Last year when I raced the last section of the Hackney half marathon, I got such severe cramp in one legs that I couldn’t move it – what would my body be like for double the distance? 

With the combination of my knee and my MG, if I say ‘I can’t run a marathon’ am I telling the truth? Is that fear talking or my, often absent, sensible voice? I was encouraged growing up to never say ‘I can’t’, and now this idea is prominent culturally with the #thisgirlcan etc campaigns. But in this case, my body may not be able to physically take the strain of a marathon.

I think the only way to know is to try a longer run over several hours – stopping if and when I need to. Rather than signing up, and committing to raising funds for Myaware, I should see whether I am able to go close to the distance. I want to believe that with enough training it’s achievable, but I won’t let my stubbornness put me at risk. Perhaps I’ll need to create my own challenge again.