Myasthenia metaphors – a rope bridge

Imagine one of those rope bridges you always see in cartoons and movies.

You know those ones with parallel ropes suspended across a ravine with wooden slats creating a solid path to walk on.

Except that it’s not so solid.

Boards fall out unexpectedly and randomly as you try to walk across.

Sometimes 4 or 5 boards fail consecutively and you just manage to leap across the gap.

Sometimes it’s an almost predictable pattern of every other board. Good, bad, good, bad…

Sometimes you don’t hit a bad board in so long that you fall into complacency, figuring you’ve passed the rotten spots. It looks like the problematic parts are in the past.

Then you crash through a hold big enough to swallow you up.

You’ve got to keep vigilant. Maintain that low level of anxiety that keeps you cautious, measured, tentative.

That’s what it’s like living in a body with chronic illness.

Don’t overcommit. Make sure you always have a backup plan, an escape route. Try to get others to realize you’re not as reliable as they might like you to be. Give yourself wide margins. Always protect yourself.

But I believe it’s important to keep going.

Keep trying to move forward.

Identify the triggers that cause the boards to drop out of your bridge and then avoid those things if you can.

  • My main triggers are heat, stress, illness, & injury. (For example, if I fall and scrape my knee I’ll struggle to move for several days because as my immune system kicks in to heal the small scrape it also tries to shut down all my voluntary muscles.)

Find assistive devices and alternative routines so that you can get past those gaps. When your body fails, find something else.

  • For me this means using my walker more, having my husband bring dinner home rather than standing to cook, and generally ignoring housekeeping. Sometimes I have to bow out of plans with friends entirely but other times I can still participate with some modifications (I lay on the floor and wear comfy clothes or pyjamas).

Be kind to yourself. Accept yourself as you are instead wishing for who you could/should be.

  • This is one I’m still working on. It helps to remind myself that we are human beings, not human doings, and our worth is not dependent on our capabilities.

Slow down. Be careful. Keep going.

No one wants to see a photo of my lying around in my pyjamas or the very messy state of my house right now so here’s a photo where you can see my cane and my subcutaneous immunoglobulin infusion pump hanging off my side as I’m out running errands. They may not be fashionable accessories but they sure are valuable!

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