18 months ago, I climbed mount Snowdon. Hard to believe really considering I currently can’t walk to the school a mile away and am relying on my car more and more. Back then, I was walking 5 miles three times a week.
I have a condition called myasthenia Gravis, which means muscle weakness. It affects the muscles that let you move but not the automatic ones like your heart that you don’t have to think about. Your brain tells your muscles to work, but the message doesn’t get through. See Myaware for more info. I’m also 27 weeks pregnant and that’s bringing its own issues.
The thought of reading (let alone joining in) those articles about ‘sweat with whoever’, or ‘body coaching’ make me want to go and take a nap. How on earth can you get fit when all your body wants to do is lie down?
While most people struggling with chronic illness, such as Myasthenia Gravis would love to be able to lose steroid weight and be able to do exercise, this can be unrealistic. A potter around the local town, or stroll around the park is too much for many. I know it is too much for me right now. I do know that once I’ve had the baby, I will hopefully be able to start exercising again. Unfortunately, during this pregnancy my mg has progressed enough that it’s causing quite a lot of muscle weakness and fatigue. I’m also struggling with SPD (Symphysis pubis dysfunction) Which causes considerable pelvic pain. I know how much better I feel when I’m active. Exercise really does help you feel more positive – although that could also be that my walks involve a good natter with a friend, and I think I enjoy that part more than the walk!
Use of our voluntary muscles in MYasthenia Gravis makes them weaker, so exercise can seem contradictory for people with MG. I mean, why would you deliberately fatigue already fatigued muscles? However, using our muscles keeps them from wasting and becoming weak, so we need to find a happy balance.
Before you start a new exercise regime, there’s a few things to consider. This is what I did prior to training for Snowdon and what I’ll be doing again once baby arrives (mg permitting) to get me back into walking regularly and losing the baby weight.
Seek good advice
Speak to your Doctor/ Specialist. They may refer you for physio to support you gaining muscle strength. We do need the support of professional trainers that have knowledge of mg so make enquiries and be prepared to take good info with you. Myaware have created some amazing info leaflets/ booklets, so keep some with you and give them to every specialist you meet to educate them on mg. there’s nothing wrong with giving professionals advice on your condition (you probably know more about it than they possibly could).
What’s your goal?
You may not want to take part in the next ‘Tough Mudder’ or half marathon, but you may want to gain enough strength to sit up for long enough to eat a meal with friends or family or play with the kids at the park. Sometimes it could just be having enough strength to wash your hair or apply make up (I know I’m struggling to wash my hair right now!). No goal is too small. In fact, don’t make the goal too hard as it might make it too difficult and you could give up before you get started.
Be like the tortoise!
Think small, slow sessions over a longer time frame. If you push too hard, too soon you might end up in a crisis situation. Slow and steady is the best way.
What do you LIKE to do?
Hate the gym? Then don’t sign up to one as you’ll only go once or twice and give it up as a lost cause. I love being out in nature. Where I live there are beautiful canal and riverside walks that change with the seasons. I’d rather be out wandering along these, chatting to a friend, making time to stop and enjoy the scenery than cooped up inside – but that’s just me (whereas my husband enjoys nothing more than pounding the treadmill and doing weights at a gym…). What is it YOU like doing?
Don’t do this alone. Once you know WHAT you want to do and achieve (your goal), and what you like to do, buddy up. You will be much more successful if you’ve got someone to talk to and keep you accountable on the days you don’t feel like doing anything. They can also keep you safe if you are taken unwell at any point. Better to be safe.
I’m not medically trained, but having mg myself, this is what I did when I went from couch potato to someone who actually enjoyed walking. We started bearly able to walk a mile in over an hour. It took over 12 months for me to gain the fitness and ability to take on the challenge of a mountain climb and I only did so because a team of friends supported me and encouraged me (and carried me part of the decent) the entire way once I made the suggestion we should do it. Yes, I was very ill for a week or so after the event, but I did recover and was soon back out walking.
Over the next year my goal is to be back to walking to school (whilst pushing a buggy!), back to walking along the canal and losing the baby weight the natural way – healthy eating and exercising.
I’ve got a health and fitness page on Facebook where I’ll be sharing recipes, exercises, hints and tips to support and encourage you. Find me on Facebook and pop me a message so I can add you and we can be on this journey together. I hope to see you there.