Category Archives: Chronic pain

#writer, art, Chronic pain

A little passion project…

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If you have a chronic illness you know how often a doctor asks you to keep track of your symptoms, medication side effects, diet, exercise, lifestyle changes, etc.

I have always hated it. I find it boring and depressing. Focusing on my symptoms reminds me I am sick, focusing on my pain makes it hurt more. So I have been really bad at it. Which doesn’t help the doctors do their job better.

So I am designing chronic pain journals that have useful, interesting, or engaging elements to them and selling them on Amazon.

My first is filled with haiku I have written over the years I have been dealing with these diseases. I designed it to commiserate, uplift, and ideally make you feel less alone.

The second I designed is a chronic pain management coloring book journal, so that keeping track of all this stuff isn’t as boring. It has a floral theme.

I’m designing other journals as well, because I am stuck inside a lot and bored and creating things makes the time pass more swiftly. You can visit my author page every now and then to see what I’ve done.

Chronic pain

A choice to keep going anyway.

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That’s where I ended up.

After 15 years of tests, medication failures,  painful treatments, expensive doctors.

I ended up with a diagnosis science poorly understands and a palliative care team.

And a choice to keep going anyway.

I am in pain every day. All day every day. Sometimes the pain is only as distracting as a well behaved toddler while you’re at the grocery store. It demands my attention constantly but doesn’t melt down. If I apply mindfulness techniques I can accept it’s presence and live with it along side me.

While I paint, clean, have coffee, exercise, socialize, drive, care for others, whatever I do.

Some days it’s a teenager who is out hours past curfew. Keeping me from sleep as I toss and turn waiting for the magical moment I can actually safely drop off.

It is never gone and there is no cure for it.

My life got livable again when I stopped looking for one and accepted my pain as part of my existence. When I relearned my body’s limitations and stopped trying to recover my old me.

When I made the choice to keep going anyway.

Chronic pain

I am never, ever, ever

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Getting better.

The slow inevitable decline of a progressive illness is hard to quantify especially when the illness in question gives you “good days” and “bad days” to begin with.

It can be difficult to notice the fact that it takes longer and longer to recover from the flu, or infusions, or too much physical activity.

The bounce back doesn’t dramatically swing from bouncy to flat. It’s more like a basketball, inevitably bouncing a little less high each time it hits the ground.

Right now I’m noticing my ball is flatter than it used to be. It’s taking me longer to recover from infusions, longer to get over colds. I run out of energy sooner on my good days.

It’s possible it’s a flare up. They can last for years after all. However it’s just as possible that I’m declining, slowly, incrementally, as my disease devours healthy nerve endings and my autonomic system loses coping mechanisms.

It’s scary and it’s depressing.

Today I’m struggling to find the silver lining.