Tag Archives: Spoonie

Chronic pain, chronicillness

The inevitable slide…

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One thing people don’t really talk about is the slow inevitable slide of progressive illness. I’ve been sick for about 16 years now, disabled for 5, and for most of that time people in my life keep asking me if I feel better.

I will never feel better.

At each stage of my particular disease I have felt the best I will ever feel again because I have a progressive disease that is killing me very, very slowly.

It’s like being murdered by a tiny snail, or stalked by death in the form of a tortoise. You’ve got a long, long time to contemplate your end, but you feel every single step of your demise.

This year has been a slide. I’ve been sicker than usual more often than not. Less able to do, more susceptible to the usual colds milling around, more exhausted after activity. Even as I have increased my exercise, improved my diet, dialed in my medications, I am feeling the slip.

Today I am on day 8 of a respiratory illness that has had me in bed unable to do much of anything all week. I know I will recover from this cold and get back to life but I also know I will be slower, weaker. It will take me a lot longer to get my breath back, to get back to the 30 minute 3 mile walks with my dog 5 times a week. To get back to lifting and gardening and hula hooping. To get back to anything really.

And it all feels so daunting. The clawing back to the surface from deep inside this hole. Especially knowing how easily another cold can come along and knock me down. Making the process start all over again.

If you are a healthy, mobile person do me a favor please. Pause and take a moment to truly revel in all the amazing things your body can do.

Just me

Today we are 50…

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Nearly 20 years into the onset of my disease I feel accomplished to be here.

It’s been a long, difficult road with pain my most stalwart companion.

However, as I enter the second half of my life I want to remember some of my most important lessons from the first half.

Spend time with the people you love when you can.

Make time to be alone.

Create strange, wonderful, silly things.

Make mistakes, lots of mistakes.

Try everything.

Don’t let someone else define you.

Keep company with furry creatures.

Find time to be in nature.

Move your body.

There are tastier and healthier greens than kale, especially if you forage. (Purslane and lamb’s quarter for example)

Find people who share your experience.

Grief doesn’t go away, it just gets weirder.

Love never dies.

I’m sure there’s more but it’s a chilly morning and I have coffee and infusions in an hour.

I guess that’s another one, try not to schedule infusions on your fiftieth birthday.

Chronic pain, Spoonie

110%

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As someone who routinely has to give significantly less than 100% I have a tendency to give more than on should on the days I feel good. While I am aware that giving too much on good days contributes to being worse off on bad days, I seem to be unable to stop myself.

An ai rendering of my dumb ass feeling superhuman and burning through all my spell slots at once.

Today I was finally feeling decent enough to do some things around the house. I started the day acknowledging that it’s been a hell of a summer and I should be low key and not do too much. I read on the porch and drank coffee, talked with my mom, and enjoyed the morning.

Then I was alone in the house. Superhero me began whispering in my ear. I decided to finish the flooring the trim on the storage closet we had redone. No big deal, the tile we are using is basically just big stickers and the trim is minimal. Besides, I will feel accomplished and have an easier time resting after I finish that right?

Except I had a really itch reaction to the cold plunge yesterday and it really needs fresh water, I’ll go ahead and drain it, clean it out, and refill it. Then I will be ready for new cold plunges on bad days and be in better shape for self care!

Except I really needed to empty the catboxes while the plunge was draining because they were gross and while I am throwing that muck away I might as well clean up any dog mess in the yard so that’s taken care of.

Time to scrub out the plunge! It’s empty of water and needs a solid scrubbing, rinsing, and then refilling.

As least I sat and rested while it refilled.

Then I went to get showered because I was sweaty and gross but there was a tile on the bathroom floor that had shifted ever so slightly resulting in a gap that has been driving me crazy for months so I trimmed a tiny piece of new tile off and fitted it into the gap, then using wood floor repair markers I colored in the piece to match the pattern on the pieces next to it.

Then I showered.

Then I got dressed and it was dinner time already! Good thing there were left overs. I decided that instead of heating and eating them I would make Fried Rice.

Then I cleaned most of the kitchen so my mom wouldn’t be stuck with that mess.

Now I feel like I’ve been flattened by a steamroller.

Is it the ADHD that makes me run around like that on a good day? Unable to stop flitting from task to task until I hit the wall and collapse? I would like to employ the myriad of coping strategies I have learned for energy management but I never seem to be able to access that part of my brain while I am up and doing things.

I’ve only been disabled by this damned disease for 16 years, it’s not like I’ve had practice or anything!