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.
At the wedding I wrote about in my last post, one of my friends told me about her recent diagnosis with an auto immune disease. She’s still in the very early stages of dealing with it and hasn’t sought support from people with the same condition yet. She was saying many things that went through my own head during the early days of MG and is currently battling many things I still struggle with.
The main thing she was swithering with was going full throttle with dancing and drinking or holding back knowing that she would be in a better state over the following days. I too have this fight regularly – I’m pictured above on the day after the wedding in ‘recovery’ mode. It’s the constant battle for someone living with a condition like ours – the instant reward of having fun in the moment and dealing with the consequences later or being steadily well behaved. It’s what the spoon theory is all about.
While people deal with this differently, being consistently well behaved is hard to adapt to for my generation as we’re told that it’s boring. So it’s a balance I haven’t mastered nor am I particularly keen to get to grips with. It takes strength of character to say no when you know yes is the fun answer. It’s the space where you might lose ‘friends’, where ‘relationships’ might break down and where you try to figure out what your new limits are.
There are no easy answers and, as I say, it’s still something I still battle regularly. The main thing is being honest with those around you and expecting them to understand. If they don’t, it’s time to start questioning why they deserve a place in your life. More often than not, I find my loved ones gently challenge me if I’m being wreckless or destructive.
Having myasthenia can mean being forced to watch others from the sidelines while they take on a challenge, enjoy something active or help you perform a task. It can be difficult to accept this, but, as I was reminded last night, there are also positives to be found.
When I was younger, watching from the sidelines was my idea of hell. I hated not being in the thick of the action whether that was a basketball game, a school play or a debate on one of many oddball theories at uni. I thought if I wasn’t involved, I was missing out. Or, even worse, that I was failing something.
Getting past my early twenties, when the world stopped revolving around me you’ll be surprised to hear, I started to accept that watching from the sidelines wasn’t always necessarily a bad thing. I’m glad I started to accept this before myasthenia came knocking as being easily fatigued can mean you spend a lot more time watching others be active/perform/look after you. I’m sure this gets more and more apparent when you have those little balls of energy in your life called children who always want to play. As I want children, being able to enjoy not being part of the action is essential for my wellbeing moving forward.
As mentioned in the heat wave post yesterday, going to a salsa class on the hottest day of the year was never going to be easy. Going to the gym at lunch was not my smartest move either as it meant I had no spoons left. I made it through the first section of the class, but started to feel dizzy and my legs felt shaky so I decided to sit out of the second half.
Initially I was a bit peeved as I look forward to my weekly class and I didn’t get to dance with Elaine. However, it meant being able to watch her enjoy the music and give smiles and gestures of encouragement when she looked unsure. It meant taking a supportive spectator role and at the end I was bursting with pride. I also experienced joy from watching the other dancers in the class enjoying themselves, not to mention I was able to pick up some new moves from the experienced salsa stars.
Taking a backseat doesn’t always mean you are missing out – you get to see things that others might miss and you get to witness the joy of others fully. I’ll try to keep this positive POV in mind next time (and there will definitely be a next time) that I’m not well enough to take part in something.