Wednesday, April 2, 2014

Waiting to Inhale

It is 2:31 am. I am waiting to inhale. MG is attacking my breathing muscles, making it hard to inhale. I took some Mestinon and I am waiting for it to work, waiting to inhale. My brain is screaming at my chest muscles, BREATHE! BREATHE! Just breathe. My muscles around my lungs cannot hear what my brain is saying. So I am here, waiting to inhale.

The way myasthenia gravis weakens breathing is not like an asthma attack or a coughing fit. It's not that kind of shortness of breath. It feels like a giant hand has covered my mouth and my nose, making it hard to inhale. I can exhale just fine. I just can't pull in a normal breath. Every breath is a struggle.

I know what triggered this breathing weakness. It has been super windy in Chicagoland. I went to the store and the disabled parking spots were full. I parked far away from the store in a huge parking lot. I got out of my car and the wind filled my lungs so much I couldn't breathe. Ducking my head helped me gulp in air, but breathing around the rushing wind overwhelmed my muscles. Trouble breathing happened on the way into the store and on the way out. Now it is after two in the morning and I am here, once again, waiting to inhale.

This feels awful. I want to breathe comfortably, like you do, like anyone does. Every second my brain is screaming for air, but my muscles cannot respond. My own body is suffocating me. I want to breathe like there is still air in the world. MG pushed me out of the airlock. I want back in. I am doing my best to wait. I am pushing back the frantic feelings, remaining calm and focused. I tried to yawn. I can't breathe well enough to yawn.

Why am I blogging? Shouldn't I be calling 911?

No.

Going to the emergency room with MG is a nightmare. 14 people in 100,000 have MG. How many people come into the local ER with MG in a week? None. A month. None. A year. None. I have an illness the emergency room doctors have never seen before. 99.99% of the time I get treated with contempt in the ER. I complain I am short of breath, but don't look upset by it. Doctors don't understand that I feel frantic and look blank.

The more trouble MG causes, the less able I am to make facial expressions. I feel dismayed and uncomfortable, and look utterly expressionless, like nothing is wrong. Except that I am mentally ill and I need a psych consult.

Hand them my medical alert id. They read it. Sometimes they mispronounce myasthenia gravis. No thanks. It's not worth the hassle. I am here at home, because I know if I rest and wait long enough my brain and lungs will synch up again. Mestinon will help if I wait. It takes about 40 minutes to work. So I am here, waiting for the medicine to work.

If I had a magic wand and could zap MG to one location in my body where it would stay for the rest of my life I would choose my legs. My legs are the least useful muscles in my body. I need to breathe and eat and speak. I need to see. I need to move my arms to play my cello. I'm not a runner, a dancer, or an athlete. I don't need my legs to live a happy, fulfilled, functional life. I love my powerchair. How odd it must sound that a good day is a wheelchair day? If I am walking that means MG is screwing up some other part of my body. Walking means I'm having a crappier day than a wheelchair day, not the other way around. Right now I want that magic wand. I want to send MG to stay in my legs forever.

I don't have a magic wand. I don't have any control over which muscle groups need to reboot. I am waiting for my breathing muscles to reboot. I am quietly sitting here and waiting to inhale.

I took a deep breath. Probably shouldn't have done that because now it is even harder to breathe. I'm frustrated and tired.

Usually it is diabetes that keeps me up at night. Blood sugar shooting high from that snack. Or dropping low because I didn't eat a snack. MG is here with me now, reminding me it hasn't gone away. Of all the things MG does to my body, choking and breathing weakness are the worst. I laugh when my arms stop moving. I crack up when my torso weakens and I lose my balance and walk at odd angles. MG makes me laugh when my speech goes haywire and I sound like Daffy Duck. Right now I can't breathe well enough to laugh. MG placed an invisible hand over my mouth and nose, breathe in through the tiny cracks. I'm getting enough air to survive, just not enough to function. It will get better. I just need to wait.

When Mestinon kicks in it works like spinach for Popeye. It is the weirdest thing to have a switch flip and suddenly muscles move again. (MG medicine looks like a miracle happened. Like this!)

Mestinon just reached my breathing muscles. I just coughed. Wow! I can cough. And I yawned. I can breathe well enough to yawn. Yawning feels good after three am. I'm not waiting to inhale. I'm all right now. My brain is speaking to my breathing muscles and my breathing muscles can hear the message. Thank you Mestinon. Thank you Dr. Mary Broadfoot Walker. Because of you I can breathe.

It feels so good to just breathe.

Mestinon makes me drool. It makes my stomach tie in knots. It makes my eyes tear up and nose run. It fills my lungs with goo. Mestinon is a drug discovered in the 1930's and has side effects to match. Right now, I don't mind. I can feel the air move through my nose, fill my lungs, expand my chest. I can breathe. It is wonderful to be able to breathe. I love how good this feels. I invite you to pause a moment and treasure the ability to breathe. Breathe in. Breathe out. Breathe in. Breathe out.

1 comment:

  1. Hello, I am just a random person who googles about MG at 4am and stumbled upon your blog, particularly this post. I was nervous and tense while reading this post! I even felt I breath a bit difficult! You are a darn good writer and your calmness is godly. I wish I had your attitude when dealing with crisis. It's beautiful, really. Most importantly, thank you for sharing. It was such a slap in the face, in a positive way, that I should feel more grateful.

    Lastly, I wish you all the strength and patience you need in getting along with MG. I wish I can mail mine to you even truthfully it is molecular compared to what you already have.

    ReplyDelete

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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