One thing I know that really took me by surprise were ALL of the limitations and disappointments MG has brought to me. And all the things that it has taken. I wrote this a while back, but it's a good reminder for those "healthy" ones out there... LOL! But seriously, as we near the end of National Myasthenia Gravis Awareness Month, the LAST thing I want is for people to forget.
The month will be over, but the disease will remain.
Ode To Chronic Illness
By Kerri Sweeris
O illness of mine which has torn me asunder,
I hate you as much as the weather I'm under.
You rob me of joy and of life and of breath.
And of you, chronic illness, I am sick to death!
Chronic illness is what I would not dare send
To kith or to kin, rotten enemy or friend.
It breaks and it weakens and hurts you some more
Til you rail against heaven and stomp on the floor.
This illness I have has cost more that I thought.
Friendships, relationships, more pain than it ought.
One thing rings true when you have something chronic.
You aren't going to fix it with gin or with tonic.
You can't fight your battles, though many they are,
You can't walk or see straight, you can't drive the car.
People will judge you for gluttony and sloth
(Unless you fall down, seize, and at the mouth froth).
I'm so sick of hearing, "But you look so good!"
This illness does things that no illness should.
I may look okay when at me you first glance,
But give me an hour and I may pee my pants!
Incontinence is only one "joy" in my life.
There's double vision, weakness, worry and strife.
Don't forget isolation, boring and lonely,
Even from one who is the one and the only....
Fill in the blank, be it family or spouse;
All I know is I'm often alone in this house.
Some people may last for a month maybe more,
But soon their own lives knock back on their door.
So for us who are chronically, totally ill,
We wait and we wait for that one magic pill.
The one that will take us to where we've been wishin'
That oh-so-desired, elusive remission.
Remember for now that if you see someone odd
They may be that way by allowance of God.
They may have some reasons they can't "this or that"
And it's not 'cause they're lazy, insolent or fat.
O illness, my illness, your death I desire
I want to be free again, free to admire
The outdoors, and swimming pools and even bee stings.
I want to be OUTSIDE to hear when birds sing.
I will never give up this fight I am in
And you, blasted illness, you will NEVER win.
I am strong, (and I'm funny) I also have class.
So you chronic illness, can kiss my sweet (BEEP).