Pain

Labour pain was like fire.

Tooth pain strikes all the way down to my toes.

Hitting a nerve during my infusions takes my breath away.

Aseptic meningitis is the most horrific thing I’ve ever felt.

But my most common pain is the ache of Myasthenia Gravis.

Most medical articles on the internet say that there is no pain caused by MG but ask any myasthenic and they’ll tell you otherwise.

That skeleton-in-jello/listing-barn feeling isn’t comfortable. I feel my bones floating in the goo and the joints are unsupported. I bend over and every piece of my spine clicks into place as I move. My muscles strain to hold it there so I don’t end up on the floor, a pile of odd angles.

The joint pain is sharp, the muscle ache is dull, but neither is that strong.

So it’s not severe but what gets me is the pervasiveness and persistence of the pain.

It is all of me, it is relentless, and it is exhausting.

I’m physically fragile. I move slowly and minimally. I wince with each bend and reach. I breathe deep to move through the pain.

I’m fragile emotionally. Days of this put me constantly on the verge of tears, except for the few moments when they spill over. I’m disappointed at not being able to bear this better, to push through it more smoothly, to overcome it.

Because it’s not so bad, objectively. I’ve had worse and worn it better.

But life is not experienced objectively. The constant affront wears me down.

So I switch from regular life mode to recovery mode. I stay in, cancel engagements, slow down.

My daughter and I read library books in bed rather than play games. I rely on my husband for even more of the household chores.

I lay on the floor and stretch. I take hot baths and read. I increase the frequency of my medication, setting alarms so I never forget. I add extra painkillers into my routine.

I make appointments for chiropractic treatment and massage.

I take care of this old house that is my home, and I know that the pain will pass. It always does.

An 8 year old blonde girl stands in front of the ice in a skating rink. She is wearing skates, an aqua sweatshirt, and a hockey helmet with a wire face mask.

My one outing last weekend was to tag along while my husband ran a few errands and then watch skating lessons. I used an electric cart in the store, I trailed way behind my family on our way into the rink, but I got to see this lovely girl on the ice.

One thought on “Pain

  1. Joyce Pedde says:

    Oh darling; your writing is so powerful! As usual, reading your descriptive metaphors is enlightening and heartbreaking! I love being able to understand your life but hate that pervasive pain is a regular part of it. Know that if I could take your pain away and bear it for you I readily would💗 but I can’t.💔. Sorry for the times I don’t acknowledge or understand the emotional toll of what you endure. You handle your challenges so well that it’s easy for us to underestimate it. I want to always be a support and never an additional stressor in your life. Thank you for describing and sharing your journey with us. I am so proud of the great Mom, wife, friend and woman you are despite the relentless reality of living with MG. I love you more than you really can know!!!

    Like

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