Amy’s story: Let’s play a little game

Simon Says…

● Lift up your right arm, and now lift up your left. Lower them again.

● Tip your head up. Look up as high as you can. Move your eyes to the left, then to the right. Now move your head to the right. Now to the left. Lower your head.

● Breathe in deep. Exhale. Repeat.

● Lift your left leg, then lower it. Lift your right leg. Now lower it.

● If you are standing, take a few steps forward, then lift your legs like you are climbing stairs.

● Squeeze your right hand tight. Now squeeze your left hand tight. Release.

● Take a deep breath. Swallow. Move your jaw as if you are chewing.

More than just a game

What was the point of that demonstration? You have just engaged your voluntary muscles. These are the muscles that are affected by myasthenia gravis (MG). These are the muscles that, with repeated use, become weaker and weaker. These are the muscles that become so weak that we can’t use them.

When you have MG that’s well-controlled, exercise that’s been approved by your medical team can be fine. It can even help. But there’s such a fine line between being okay and recognizing the need to stop and rest before it goes too far. The problem for someone like me, who’s not well-controlled right now, is how badly my symptoms could get worse through exercise. I could end up going into crisis.

How MG impacts my everyday life

There is no cure for myasthenia at this time. The medical community – even the NHS (the UK’s National Health Service website) – says that “with treatment, those with myasthenia gravis can lead a normal life.” How is what I’m living ‘normal’? Their definition of normal is significantly different from mine. I have learned to live with the symptoms.

When eating, I have learned to take care. Small mouthfuls. Concentrate on my swallow, rest before I chew and swallow again. If I don’t do this, I will choke on my food. I have learned to lower my standards. My house isn’t always clean and tidy. Sometimes I have to rely on convenience foods, take-aways, and friends supplying meals for my family. I’ve had to accept that there will be days I can’t shower. Washing my hair is a once-a-week workout.

I have learned that resting is a proactive activity. Gone are the days of walking 5 miles a day. I have learned to walk the disability path, which is filled with obstacles and judgment. I have learned to ignore stupid comments, and I choose to be positive in spite of my physical inability as I work to manage my symptoms.

Still with me?

Thank you for following along and doing this. Awareness is priceless! Now you can say, “I have heard of myasthenia.”