Just Because I Can Today Doesn't Mean I Can Tomorrow
How often have you heard this?
“Why can't you come out THIS time?”
“Maybe you need to go get a second opinion?”
“I'm not even going to ask you how you are anymore because it's always the same...You’re sick, I get it.”
“Why don’t you want to go to the hospital?”
“What do you mean you can handle it? Clearly, you can't.”
“Have you thought about just cutting it all out?”
“My friend was cured by...”
And the list goes on and on...
The advice and criticism from others never end
It never ends though does it? Those who have never suffered could never understand the fine balance of continuing on with life and deep-diving into sickness.
Everything, every choice is questioned and for some reason, their inexperienced opinions and advice sound so much more worthy than your lived experiences. There are lots of ‘experts by inexperience’ out there just waiting to give you advice or criticism.
Every day with Crohn's disease is so different
I've missed out on so much in my life because of the restrictions of Crohn's. I've also attended things in the midst of a deep flare. Some days I took risks - aka, doing things such as eating or drinking something that was going to hurt but was oh so worth it.
But just because I can today doesn’t mean I can tomorrow.
Every day is different and only we can understand that.
My mind is not affected by the disease, but my body has been and because of that, they fight to have control or power over me. Some days my mind might win out, and some days my body wins. It's like being trapped, silenced, and tortured by your own self.
Life doesn't just stop because we're sick
Life continues to go on without us. Being sick does not mean that life can or will stop. Unfortunately for us, life will continue to go on with or without us. And whether or not we are ready for it, the bills will continue to pile up and so will the responsibilities.
So we fight. We continue to pick and choose what we're capable of on that day.
Some days we manage to come into work at our sickest, sometimes were floored by the minor things.
We know the outcome of hospital visits and appointments
We also know our bodies and the professionals that deal with our diseases. We know the risk if we choose to go into ED. We know that we risk being told we are; delusional, after drugs, imagining things, its “women issues”, having a minor flare, etc. We know that we may be dismissed and told to see our specialist, so then all that time spent waiting to see a doctor is now a gigantic waste of our time and ENERGY!
Energy is absorbed by everything. Yes, even waiting in an ED waiting room is exhausting because it's done with the pressure of trying to be quiet, not poo yourself, wondering if the doctor is going to be like, the crying, the rocking, the sweats.
Support and understanding from those who care
Do you know what can help that exhaustion? Honesty; brutal honesty. It will ensure that the ones who care will stay, the ones that have your back will support you, and the ones that love you will give you their understanding.
Because those who stay see you. They don’t suck anymore out of you but give you what you need.
Those are the ones that know that just because you can today, doesn’t mean you can tomorrow.
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