Let me Off the Frickin’ Plane

Today, I remembered what having Myasthenia Gravis feels like.

I took a flight a couple months ago. And during takeoff, I lifted my arm to adjust the tv.

“Ah!” I exclaimed to my seat buddy, “THIS is what MG feels like!”

And then I made them lift their arms up a bunch of times (…it wasn’t weird - we were travelling together).

Gravity working overtime against your whole body. That’s what it feels like – for me anyway — sometimes, at least.

That day on the plane, I was in a really good place. I was near-normal (well – whatever my normal is).  And I was almost a year deep into remission from this ridiculous disease.

But today, I am not in a good place.

And so my plane isn’t going on a trip to Vancouver Island.

My plane is going up – gravity is forcing down – and I don’t know how long I will feel like this.

And I don’t know my destination.

And I don’t know how shitty it will be when I get there. And I don’t know when I get to come back home. (But I hope I can take a bus.)

I haven’t been feeling great for a couple weeks now. (That’s optimistic-speak for “It’s been a rough few weeks.”) In hindsight, I can see the slow ramp-up. But I seem to always ignore what it could be.

For me, it looked like a lot less stamina. I would get fatigued a lot faster. The boring stuff like carrying groceries became a dreaded task, and then soon it was a playdate feeling like an insurmountable burden. It started to feel like anything extra just wasn’t worth the extra. How can I get out of this?

Soon my To Do list became my To Get Out Of list:

“She shouldn’t go to dance today, she’s had a really rough day after not very much sleep.” (check)

“Ah, we can’t make it! She woke up with a fever!” (check) No lies. Just not the whole story.

For some reason, I still don’t recognize this as the slow ramp-up to MG.

So I cancel plans.

The fun plans like the playdate on a winter day.

And then, (because I have made a vow that while I am well, I will feed my sick friends) the grand plans of making supper for an ill friend. I’m using all my energy to keep my kids from climbing on the fridge and throwing knives at each other. I don’t even have the energy to make a good supper. Grilled cheese made in the toaster, it is.

But here I am this morning, after a blessed, 10 hours of uninterrupted sleep, two hours into the day and feeling like I am in wet cement.

Folding a pile of towels, taking breaks to get it done.

Reading through the really great feedback I got on the project for my first course towards a nursing diploma, eyes muscles fatigued from bouncing the screen.

What was I thinking working towards becoming a nurse? Where is this plane going?

Knowing I need to take a pill (for the first time in a long time) to help with this muscle fatigue but realizing I am having a hard time thinking myself off the couch. Then my 5 year old dresses up like Dorothy, grey kitten in hand as Toto, and presents me with two hair elastics to be tied on the end of a partially braided pigtail.

“I can’t right now, dear.” I need to eat some food and take a pill, then give me a half an hour for it to set in…

“Please, Mom?” Asked so nicely.

Tears spring to my eyes as I realize each of my girls are a year older than they were the last time I was low.

They will see my missing pieces now. Oh, no. Please, no. Get me off this plane.

And so, with trembling arms, I tie in one braid, then the other. Their father walks in the room “I can do that.” But he doesn’t know the feeling of having a missing piece. I need to do this.

“Take a pill, Erica.”

“I just need to eat first.”

I want to ask him to bring me something, but he is already running late from managing three little girls who insist on piggy back rides, and peanut butter and honey on toast. And he’s doing it solo. Because I am on the plane.

But I didn’t have to ask. He brings me a bowl of cereal. I prop it to rest my arms.

I take a few bites of food to cushion the blow to my stomach and swallow down the pill that he brought me.

Another bite and the cereal goes down the wrong way.

What’s happening here? Was it my tongue and throat not agreeing to work because of the MG? Or is this just a coincidence? When was the last time I choked on food?

I am still coughing, harder now.

Will I have enough steam to get this cereal out of this wrong spot?

Now I have three girls and a man gathered too close around me. Let me breathe.

Thoughts tumble. Please, not this plane ride again. What was I thinking – trying to become a nurse?! They are old enough to see my missing pieces now… They are old enough to remember that they had a sick mom.

Tears streaming down my face. But it’s not from the coughing.

I am just so sad.

Please, tell them I am fine.

But I can’t get it out. I try to smile through the tears and the coughing and wave at them with a thumbs up.

That reminds him. They stare at me with wide eyes.

“She’s fine, girls, she’s just coughing on her cereal.”

I look at four worried faces.

Someone get me off this plane.