211/365 – Finding the strength to exercise with myasthenia 

I received a comment the other day asking how I get the strength to do exercise like walking and cycling. It’s less about ‘getting the strength’, as this implies the strength comes from something external like medication, and more about finding it…let me explain. 

The background

1) I’m incredibly lucky as I’ve never lost control of the muscles in my arms and legs. This has meant right through the myasthenia journey, I’ve been able to continue exercising excluding my six week recovery period after the thymectomy. 

2) My consultant has encouraged keeping up regular exercise as he suggested the stronger I keep my muscles, the more resistant they’ll be to weakness.

3) Being sporty is a central part of my identity – I’ve played football at a top level in Scotland, boxed for my university, played basketball at club level, done almost every kind of dancing and tried most other sports at some point.  More than that, I would always be the person asking for extra fitness – ironically, I love the feeling of physical exhaustion…when it’s well earned. Equating my general strength levels with how strong I feel physically meant I had a battle on my hands when diagnosed with myasthenia. 

How I find the strength 

There is no set formula for how I find the strength to exercise and you’ll see from reading this blog that I don’t always manage this – Watching from the sidelines is a good example of this. The most important aspect of the how is related to point 3 above – I genuinely love feeling fit and strong. In fact, there are very few things I would rather spend time doing. This makes it easier to push myself when I’m not feeling 100%/50%/25%.  If you don’t enjoy the exercise you do, chances are you won’t push yourself to do it when you’re feeling less than your best aka most days.

  • So tip 1 is find some kind of physical activity that you enjoy. Don’t try to do long walks if they bore you and don’t get a gym membership if you’d rather be anywhere else. Find something that you are genuinely interested in and give it a go. It doesn’t matter if that’s yoga, surfing, mixed martial arts or rugby – find a way to do it and give it a go. Just make sure you ease yourself in and allow time to figure out what your limits are. 

The times I’ve failed at pushing myself, I’ve usually been exercising alone. 

  • tip 2 Find someone to do the kind of exercise you’ll enjoy with.  Not only will this make it social, so feel like less of a chore, you are more likely to push yourself for someone else. 

Pushing yourself too far though, whether it is for a friend or not, can be a painful experience. Honestly, there have been times that I should have listened to my body but I’ve failed to hear it’s warnings. Mostly though, I’ve been pleasantly surprised at how my body has coped with exercising with myasthenia. 

  • Tip 3 if you can’t already, learn to read your body’s signals and test the boundaries gently to see how it responds. You’ll never get active if you take your body’s first grumble as an authoritative source. If you’re not active at present, the transition may not be easy but it’s worth the effort, according to my consultant. 
  • Tip 4 Keep in mind that your limits will change and so you’ll need to keep checking and adjust. I’ve found it useful to keep track of the exercise I do and how I feel after it. You can do this via a diary, an app or just a note in your phone. 

Finally, all this keeping fit is great but what are you doing it for? Setting goals  and challenges is a key way I manage to find the strength to push myself.

  • Tip 5 once you’ve found the activity you enjoy, set yourself some achievable goals. It doesn’t matter what these are – you are more likely to keep going if you have something to work towards. My goals are present are being fit enough to cycle 60 miles and run a 10km in under an hour in September.

3 thoughts on “211/365 – Finding the strength to exercise with myasthenia ”

  1. Hi, thank you so much for replying, had been following almost all your blogs, fantastic. You are still young and plenty of vigour, lot of determinations for the future. Even though with the myasthenia, you are positive and always fighting with it , excellent. So I wish you always be courageous and enjoy life. Thanks a lot for all the tips and counseling. I’ll give it a try. I’m not that young, 61 now, was so active, and on the seventh of Dec 2014, I find myself can’t chew a piece of bread, scalp, face jaws being numb, thought it will go by its own. Instead it is taking over. Now depressed, loosing kgs, finally came to know about the desease. Me too went for a thymectomy, doctor told that after surgery, I can go on remission, and will not need medication. In the beginning it was good, can eat,talk and breath easily. Now 4 months gone, the myasthenia came back. Now doc told me I have to live with it. I’ve been put on steroid, azathioprine, mestinon, with all the horrible side effects. Can’t walk long, tired easily, now depression is taking over. Anxiety, don’t know how to get well. Lack of energy, will try to follow your instructions, a bit of exercise everyday, to strengthen muscles. I’ve already lost control of my muscles in arms and legs too even chewing is difficult. Will try to follow your advice and battle with myasthenia. Thanks a lot.

  2. I so agree! Exercise and I do not hold a long standing relationship, but since it became about being social – walking with my friend whilst putting the world to right – I’ve found I actually (dare I say it?) enjoy it. I’m fairly sure that my friends encouragement has helped me walk more than I thought possible and stronger muscles surely must help on the days my limbs feel like lead. And it has really improved my mood!

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