Some Thoughts

I have some thoughts I need to get out and I need a space to talk. 

I'm having a hard time getting myself to keep going right now. It's been over 2 weeks since my trip to the UC Davis Myasthenia Gravis Clinic but I am still trying to recover. I'm just so tired. So completely worn down by having to fight so hard all the time. The doctor I saw at Davis told me the treatment I've been on and state I've been in the last few years is just "barely keeping you out of the hospital all of time." When she said that my whole body sighed in relief. It isn't my fault. I'm not a failure. I've worked so hard to try to improve and get my life back but I haven't been able to make any significant strides toward improvement, no matter how hard I've tried. It's not my fault. It's not my fault.

I wish I could communicate what's it's like to always live precariously on the edge, to always have to fight so hard just to maintain. I can't though, not right now at least. 

I'm so tired. I just want my freedom back, to not have to look at the clock constantly because I have to rest every hour. I want to be able to move, to make plans, to play music, to see friends. I want to have a life again. 

We go back to Davis in a few weeks and that appointment will be much harder than the last one because I have to do an exhausting test in the morning then multiple hours of an appointment after. But my doctor is going to create a treatment plan with this appointment. There's hope. I'll finally have a treatment plan from a Myasthenia expert who can make sense of this magical medical mystery body. There's hope.

But right now I'm tired and worn down. I'm listening to Harry Potter and rewatching The West Wing, two things I always turn to when I need comfort. I'm angry, I'm frustrated, I'm disappointed, I'm happy, I'm sad, I'm laughing, I'm crying. I'm too tired to make sense of it so I'm just going with it. Push to the other side until I can't push anymore.

So I'm in bed eating my lunch, trying to hold my body up, listening to my cat snore, and watching the bluejay eat the bird food my husband put out outside my window. If I live in these moments, I'm ok. So right now, I'm ok.

In Stillness

You may be wondering why I haven't written a blog post in a year. There's a long, complicated answer but in short I've been bedridden the last year. The day of my last post was actually the first day it started. I finally started aggressive treatment for Myasthenia Gravis last September but that treatment made me sicker than I've ever been. I am doing better than I was six months ago but I haven't been able to fully recover and leave my bed for good. I'm not sure what's going on and neither do my doctors. It's a long story and someday I will have more strength to discuss everything that has happened. It's another link in the long narrative of "Inexplicable Things My Body Does No One Can Explain". In the meantime, here's a poem I wrote in my journal a few weeks ago:

"In Stillness"

In the stillness I exist
Not in motion
Motion is still
Still
Where life is slowly
Tubes hanging from my face
A machine breathing for me
Pulling life in and out
In stillness
A portrait of a woman frozen in time
As fibers inside bend and break
With the turning of the world
Still. I am still
Waiting for a tomorrow
Dreaming of a yesterday
To be in motion once again
To feel the spinning
Like laughing on a carnival ride
As lights burst all around
In the candied popcorn air
Spinning
Only stillness now
But in stillness I am strong
In stillness I can fight
I gather knowledge
I smell of lavender and stale air
Green tea and vomit
Salt and ginger
In stillness I survive
In stillness I fight on
Faster than any beating heart

Spinning outside

Me, Mopar, BiPAP, in stillness