249/365 – Opting out of cycle

Yesterday Elaine and I made the tough decision to not take part in the 60 mile cycle to Eastbourne today. While we had been preparing for it for a few months, we hadn’t done anywhere close to the 60 mile distance and didn’t feel confident we could complete it. Not to mention it started in Croydon, about an hour and a half from our house, at 9am, neither of us had slept well this week and it was forecast to rain all day. From the few hours we were out cycling in the rain a fortnight ago, to think of that misery all day stripped it of any fun. 
In the spirit of finding time to do what makes you happy, this week I decided to question anything that I felt obliged to do in my spare time. I was dreading the cycle, but not in a nervous anticipation kind of way. In an even if I make it in to Eastbourne, I’m going to be too exhausted to care. 

So instead I had a long lie, watched Jimmy Fallon vs Ellen DeGeneres lip sync battle (Jimmy’s Whip nae nae is outstanding), played tennis, ate some tasty lunch and went to see Legend in the same time it would have taken me to cycle to Eastbourne.  

 
All the training has been really fun and before it gets too cold I’m going to try to get out for another long cycle. But the right choice was made today…nae nae. 

247/365 – Remembering what makes you happy and finding time to do it

When you have a condition like myasthenia, it can feel all consuming. There’s so much to think about that often you’re left with little room for anything else. It’s no wonder then that people with MG can be left feeling low and anxious. 

I’ve found to have a good quality of life with MG, it’s important to remember what it is that makes me happy. When I feel like I don’t know what that is, I try something new. If that’s not ‘the thing’ then I try something else. Sometimes it can be difficult to motivate myself and that’s ok. Each time I do though, I’m always left feeling more positive about everything including the myasthenia. 

Last night, I made time for a walk with the good company of my friend Kate down by the river – one of my favourite things to do in London – getting a bargain burrito and an episode of a TV series I’m enjoying, Peaky Blinders. The picture above is on the bank of the Thameside with some scupltures that are part of a festival being hosted there. All simple pleasures but effective in making me feel happy. Even if it’s just half an hour every couple of days to do things that make you happy, I find allowing myself that short amount of positive time makes a big difference to how able I feel to cope with the myasthenia. 

Some other things that have the same impact on me: Going to the cinema, salsa dancing (and so many other things) with Elaine, any kind of catch up with any/all of my best friends, Gemma, Steph and Sarah, reading in bed on weekend mornings, having open conversations with anyone, the endless possibilities of a Friday night train up to Edinburgh, the feeling of infinite options during Friday night drinks, having a glass of wine while speaking politics with my parents, getting out into the middle of nowhere for a walk or cycle, exploring somewhere new, long baths, the first sip of a good cup of coffee….I could go on and on.

Even just writing out this list made me happy. 

48/365 – Being defined by myasthenia gravis

I’ve recently been informed that a small number of people with myasthenia find a couple of terms related to the condition offensive. These are: ‘myasthenic’ and ‘sufferer’. I just want to apologise about my use of these terms and any offence it may have caused.

More interestingly than ‘sufferer’ which has connotations of being a victim, the reason some people have taken offence to ‘myasthenic’ is because it makes them feel defined by the condition. Although personally I don’t mind the term, I understand the frustration. MG can take up a lot of your mental space and so it’s better not to reinforce it’s prominence in your life through language. The preferred alternative is ‘people/person with myasthenia’ – bit of a mouthful but it suggests working with the condition rather than it dominating.

Defining your identity wholly around MG is not healthy – it suggests that it is in control of your life. While the condition does fluctuate, so can be difficult to predict, it doesn’t need to be your defining characteristic. It suggests giving yourself over to your rogue immune system – it suggests passive acceptance. When people describe you, what do you want them to say? Is it simply ….. has myasthenia? Probably not.

Can being defined by MG be a positive thing?
Keeping all of the above in mind, there is a danger of going too far the other way. Many people I have spoken don’t want to ‘come out’ as having myasthenia and that is their choice. They are worried about people’s reactions, about being underestimated and how family members might feel about them being open. I get all this, but I personally feel like there’s a responsibility on me to try to raise awareness about the condition. This is difficult to do if you’re not willing to admit having it.

I’ve seen a lot of social media posts centred around the idea ‘you are more than your condition’ and of course that’s true. But this focus, to me, risks damaging the idea of community that can be really comforting (which I’ll discuss more tomorrow) and also encourages hiding rather than being proud of the struggles we endure and survive. I am definitely more than my condition but I do have to fight against the MG most days.

I’d love to get to a place where people with MG can say that they have the condition and there will be a look of recognition in the person’s face. Even a glimmer of recognition will be an improvement on most conversations we have. While the good work that charities like Myaware to raise the condition’s profile helps immensely, every time someone with MG speaks about their condition they are helping to build a future where the term ‘myasthenia gravis’ will no longer evoke blank expressions.

22/365 – Girls gone wild

During this period of rest between jobs, I’ve been keeping myself busy with bits of work, volunteering with Childline and Myaware and trying to get myself as strong and healthy as possible. A key reason for this drive to get fit is because I’m going to be doing the Camino De Santiago with Elaine, and hopefully some of our friends, this May.

Today, I spent time doing another thing that’s been keeping me sane during my break from work – I went to the cinema to see Wild. If you’ve not heard of it, Wild is Cheryl Strayed’s true story. She walked 1,000 miles on her own, from the Mexican border to Canada, to deal with the grief of losing her mother, her subsequent drug addiction and the guilt over the breakdown of her relationship with her husband. As you can imagine, aside from Reese Witherspoon’s raw and powerful portrayal, the film’s concept has got me rather excited about our trek this spring.

Let me first tell you about why we decided to do the Camino for the first time last year. Last Christmas, Elaine and I bought each other flights to Santiago de Compostella without giving the logistics of what we were doing much thought. We had both wanted to do at least a part of the Camino for years – me since watching the film about it, The Way, and Elaine since hearing about it at church.

When I got my diagnosis of MG, I felt the desire to go become even stronger. I had something to prove to myself – I needed to know I could still live fully and challenge myself physically and psychologically.

If you haven’t heard of the Camino de Santiago, it’s a pilgrimage to Northern Spain that started in the Middle Ages. The idea back in those days was that you started your journey to Santiago de Compostella (where it is believed St James is buried in the cathedral) from your front door, however now there are many established hiking routes including the Portugese way and the French way.

Last year we walked the last 120km
of the French way – from Sarria to Santiago. Along with many other glory hunters, we joined the groups who had been walking for months for the final stretch of the journey and it is one of the most amazing things I’ve ever done. We met people from all over the world with fascinating stories to share, got the buzz from achieving a really tough physical challenge, had too many blisters to count and saw a beautiful part of Spain that we probably would never have visited otherwise. I also used it as the first stage in my staggered triathlon to raise funds for Myaware, which felt fitting as the reason I had finally pushed myself to do it was myasthenia.

In preparation, I went out hiking from January onwards with my friend Keith, tried to walk as much as possible in my day-to-day life and even dragged my brother out on a mammoth trek one weekend in Edinburgh. The one bit of prep I didn’t do was training with a full backpack on – big mistake. Still, my back has nearly recovered. I also bought cheap shoes – even bigger mistake. My feet still hate me and can’t believe I’ve signed up to do it again this year.

Physically, the hike was challenging but I believe that was due to my poor shoe choice. While my muscles felt equipped to deal with the 20ish km stumble, my blistered feet did not. By the end we were being over taken by elderly ladies, chihuahuas and snails.

Psychologically, the trek was incredible for me. I never allowed doubt to creep in, I gave my mind space to wander anywhere it liked, I handled the challenge of being around all kinds of dogs (I have a dog phobia) and I felt mentally cleansed at the end of it.

When your daily routine is eat, walk, eat, read and sleep in the quiet wild, with the sound of frogs and birds singing as your constant companion, it’s hard to imagine that you’ll ever be stressed again.

This year we are doing a shorter walk – the first stage of the French route from St Jean Pied de Port to Pamplona. It’s 60ish kms, about half the length, however it is in the Pyrenees so the terrain is more intense. Whether I do the pass over the mountains will probably be down to how fit I’m feeling at the time and how the weather is. But, at this point, I want to give myself the best chance of being able to conquer the Napoleon pass (the French general and his soldiers used the route).

The satisfaction of completing physical challenges like the Camino is something I’ve always enjoyed and I was delighted to find out last year that I was still capable of achieving such a feat.

Today’s photo is from my night walk around London. Stay tuned for more news about the Camino and about other physical challenges I have for this year.

I leave you with this quote from Cheryl Strayed from her book, Wild: From Lost to Found on the Pacific Crest Trail.

‘I knew that if I allowed fear to overtake me, my journey was doomed. Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me.’