Category Archives: Chronic pain

Folding in on myself…

I feel as though I am folding in on myself, choosing myself for company and comfort more and more.

I do have my family and spouse and ever since my friend moved in with us I have felt little to no need to leave the house for companionship.

She, like me, lives in a body with designs on a difficult existence and I find the comfort of sharing life with someone who really gets it so fulfilling I fear my inner goblin has begun to take me over.

It’s just hard, you see.

Hard to live each day in a body that simply never lets you forget that you are supremely fucked.

I never feel good. I haven’t felt good in over 13 years.

I feel less bad sometimes.

I have amazing experiences that push the less bad into the background sometimes.

I’m really good at giving the appearance of doing pretty damn ok.

But I hurt. Somewhere. A lot. All the time.

I’m even improving and getting off medications and having wins and I’m still hurting all the time. Just, less.

SO yeah. It’s really hard to carry all that around all the time and then go somewhere with people who love you and NOT just dump it on them every single time you see them.

So I don’t. I talk about ANYTHING else.

Then I feel like I am not talking about the thing that most impacts my life and that nobody really knows me anymore.

Then I feel like who could really want to know me when what I have to talk about is just hurting all the time?

So I fold in on myself. I choose my own company.

I choose my own comfort.

Anything worth doing…

is worth doing poorly.

Do you have a pile of clean laundry in a basket waiting to fold and put away? Is it taunting you with recriminations on just how unable you are to sit through the immensity of that chore?

Fold and put away whatever is on top, and walk away.

Are your dishes piling up because the dishwasher is full of clean dishes you don’t have the energy to put away today? Hand wash your coffee cup and set is on a hand towel to dry.

Walk away.

Can’t shower? Wet a wash cloth, add soap, wipe the stinky bits down.

Can’t bring yourself to brush your teeth? Rinse with mouthwash.

There are no actual rules to how you clean, yourself or your house, especially when you have a chronic illness. Leave things half done, only do a little, rest 187 times as you do a chore. Find the rhythm and method that work the best for you – THAT DAY – and use them.

Then forgive yourself for not being a fully able bodied person and congratulate yourself on having folded a sheet, or washed your armpits, or microwaved a bowl of soup.

The stress and guilt of the things we cannot do is just as exhausting to deal with as our disease. So don’t engage with them.

You aren’t supposed to be able to do as much as someone in good health. This doesn’t make you less than, it just makes you different. I bet there are a million small ways you make life better for the people you love, even if being there to listen when they need you takes the place of hand sewing all their Halloween costumes.

There are so many ways to show up for people, we are not limited to only those ways commonly used by the young and the healthy.

Be safe and be well.

Distraction art

Creative flow is one of the methods I use to distract from pain.

Yes, I know, I also would have punched someone in the stomach had they told me to distract from my pain with meditation or art or anything other than pain killers but then I learned I had a disease that didn’t respond very well to pain killers so, I had to try.

Turns out the brain is REALLY good at distracting itself from pain, so who knew?

So when I hurt badly enough that I can’t “normal” but not so badly that I am utterly flattened I turn to paints and paper to create myself some pain control.

Lately I have been using acrylic paint pens with brush tips. Here are some of my recent creations: