How can I convey
the utter fatigue?
"But, Carol, you can ride a bike.
"But, Carol, you can ride a bike.
You can drive, even at night.
You have a husband who comes home almost every night.
You are taken care of materially.
You have so much good in your life.
Don't you see it?"
Yes, god damn it.
Of course, I see it.
But what you don't see,
and I feel you have no concept of understanding,
is the drain and the life sucking toll
that 24/7, 365
selfcare
gavels.
Pound!
Mrs. Welch, your sentence is....Every day for the rest of your breathing life,you must concentrate in order to function.Winters will be extremely hard.Not that the cold will worsen your symptoms.But the labor of pulling on two pair of socks?It will drain your energy.Dressing will be an even more laborious task than it is in the warmer months.You must rest and recuperate after each round of winter layers.When you succeed, remember to give your self creditfor getting clothed.
To whomever wants to give me an earful of their coping wisdom...
I'm so tired of hearing it.
I'm so tired of hearing it.
Tired of letting your supposedly good advice roll off me.
Tired of responding with a simple, "Thank you," so as to be polite.
When inside I'm screaming,
"That is not what you say to a chronically ill person!"
"That is not what you say to a chronically ill person!"
I want to shake you,
wake you to my reality.
At times I think maybe I should try to explain more, try to teach about it.
At times I think maybe I should try to explain more, try to teach about it.
But I don't have the capacity to do so.
And to what end?
I simply don't have that energy to give.
And to what end?
I simply don't have that energy to give.
This unsolicited advice of yours,
of what I should be thankful for,
of all the blessings in my life...
Why do you think I'm not thankful for these things?
I am.
I am.
Why do you deem it that I'm not aware of them?
I am.
Do you think I am ignorant of the deep suffering of the world?
I'm not.
Do you project into my words?
That because I express my frustration and exhaustion
that for some reason that negates the gratitude in my soul?
It doesn't.
It doesn't.
I don't think that way.
Just give me some fucking space to be human.
I know how to maneuver and navigate this maze.
I've been at it a long time.
I don't want, I don't need, your words of supposed "wisdom."
I don't want, I don't need, your words of supposed "wisdom."
And I can't help but wonder how well you would fare
if you hobbled a mile in my sandals?
365, 24/7...
Year after year after year after...
365, 24/7...
Year after year after year after...
In response to your unsolicited suggestions,
I internally endeavor to calm my self.
I tell my self that I cannot expect you to understand.
It seems to me that if you did
you would not reply with the "Yeah, buts..."
So...fuck you.
(Carol, now...don't say that. But it is how I feel at the moment.)
I'm so fucking tired of living a life of concentrated effort
to accomplish what should be the simplest of tasks.
Sometimes I think I'd like a caregiver.
But I don't have one.
I am my own caregiver.
I just wish I'd get some cred for that sometimes.
A little praise?
A dribble here or there?
A dribble here or there?
The other week I read that if cobalt poisoning isn't addressed in its early stages,
the damages it exacts are seldom reversable.
I read it and thought, Well. Shit.
Then I thought, I'm not going to believe that.
Cobalt leached inside me for eight years before it got corked...
