A choice to keep going anyway.

March 18, 2026 Savvy Spoonie Leave a comment

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

March 10, 2026 Savvy Spoonie Leave a comment

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.

grief, loss, Love

Missing Something

March 9, 2026 Savvy Spoonie Leave a comment

I pat my pockets absently for the item I’ve forgotten, rummaging through the detritus on the desk, the overflowing “in case of” items in my bag.

I’m missing something.

I go back upstairs to see if I left it there but nothing catches the faint haunting thought in my brain. Wallet yes, keys yes, gloves yes.

What is it?

I check the bathroom as I often leave things sitting on the windowsill or sink, set aside during teeth brushing or other ablutions.

Nope.

I’m out of time. Whatever it is, I hope I really don’t need it because I’m going to have to leave without it. I open the door, step out onto the porch and freeze.

It’s you.

I’m missing you.

Your absence in my life is still enough of a novelty to send me off in a flurry of activity searching for whatever it is that will make me whole, because I simply never am.

A tear escapes my eye, chased down my cheek by an eager sibling.

Deep breaths.

I don’t have time for grief today.

———— SavvySpoonie 2026