Crohn's Disease as experienced by me. “Leveling Pain” creating an understanding of the internal experience of chronic pain and what it does

Working to relieve pain

Recognising sources and symptoms


What happens when you have low mental energy

Having a consistent thought train becomes impossibly difficult
It’s so hard to explain what might be helpful
If you pose a question, it’s so much harder to answer.
The answer needs to come naturally.
Naturally we try to stay on course of what we want.

What I want differs from what I need.

What I need changes what I can want.

The want to be healthy again is like the want to be dead.
It simply doesn’t exist. No path to nor from there.

Words became harder to say. Like my jaw loses its flex and becomes static.
The same happens to my hands. Sitting wanting to be moving but observing my hands as they lay still on my lap. Catatonic.

Thoughts come and go without recollection.

Pain rises and falls without spur.

Talking about it makes it worse.
Asking about it makes it there.

Ask me if I’m OK and you will always find that I am not.
Sometimes I was OK, but now you’ve asked I am not.
When you ask if I’m OK you must know that I am not otherwise it wouldn’t be something you asked.

I can’t say no, because then you’ll try to help.

Help hurts when it isn’t what I need.
Help hurts even if it is.

Run away if you think you can’t help.

Help that doesn’t want to help.

Self-starting and motivational speech couldn’t be less helpful.
If you feel helpless. It’s because you are.

Helping yourself out of a helpless situation.

Don’t be trying harder. Try smarter.

Energy is limited so what you use, use it well.

Inform those that take your energy without knowing that you need it back.
This hurts more and takes so much.
Ask those who give you energy to shield you from those who would like to take it.

Learn what it is that takes your energy fast.
Some things may slowly sap your capabilities.

Some will grab it all in an instant.
When grabbed there is no return.

Cure the grab by being out of reach.
Each time you get grabbed you will learn.

Being so tired in the moment you won’t know what grabbed you so hard.
Like being grabbed in the dark you’ll know the sharpness of the claw but not the bird that struck you.

It’s vital to identify those “birds”. Sometimes they fly in unexpectedly. Waiting for the worst moment to arrive.

Put up barriers so those birds don’t fly in.

Have safety nets so when you crash you don’t fall into the sea.

Dismay and upset are your worst enemies.
Lifting your mood will bring peace.

Practice and Exercise will bring health again.
Getting to a place where you can exercise and practice may be the most difficult.