Ode To Chronic Illness

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).

Frustration

PPPhhhhttt.

That's how I feel today. It's Monday. I'm tired. (What is with waking up every hour to pee? I know I drink a lot of water, but that was ridiculous!) Jacob seems to have forgotten how to do everything he has learned to do independently: getting dressed, going potty on his own (every. five. minutes.), feeding himself....Sometimes I wonder about that child. Genius one second, scatterbrained the next. Oh, wait, that's just like me!

Blackie is doing much better, thank goodness. The pain medicine works wonders, and he is once again sleeping through the night. I know this is all normal mom stuff....I just wished it stopped there.

My fibro has really been acting up...could it be weather related? I have been so focused (not by choice) on the diabetes and MG that I don't even really know that much about what affects fibromyalgia. And frankly I don't have the time or energy to find out.

I'm trying to write...but I never have time! (Yah, I know....welcome to life). I asked my husband if he would just please support my writing, and he says "I always have honey!" So I try to write a little bit at night when he's home to watch after Jacob, and I get: "Are you gonna be one that thing all night?"

OH...this is my favorite: a couple of years ago, to TRY to make my point about my hubby working outside too much and not spending enough time with Jacob, I was like: "If something happened to him, or me, would you be like, 'Gosh, I wish I would have gotten one more project done,' or 'Gee, I wish I would have spent more time with my son?'" Which was NOT well-received, let me tell you.

So now I get hear "If something happened to me or Jacob would you say, 'Gee, I wish I would have written one more paragraph, or Gee, I wish I would have spent one more hour with my family?'" I was like, I'm already with him 24/7, what's your point?? "Family time" by the way, is sitting on our butts watching TV. It's not like we bond over Whale Wars for sh!ts sake.

Ug. Sorry. I just get tired of fighting for every single thing. Breathing. Walking up the stairs. Getting a MOMENT to myself. Putting the dogs out. Not being in pain. Getting hubby to spend time with us... time that matters. I have ZERO energy, and I'm supposed to be a wife and mom. And friend. And sister. And daughter. And financier. And psychologist. And housecleaner. And medical genuis. And playmate. And writer? Yah. Right.

Anywho. Sorry for the downer. Just frustrated.