Living with Pain & Exhaustion

Twelve hours after our carbon monoxide incident…I can’t say I slept better. I can’t say I feel better this morning than other recent mornings.

I wish I could.

I wish I could blame being tired and achy and waking up with so few spoons on the faulty stove.

I can’t. I’m almost fifty. I’ve struggled with exhaustion for 25 years at least. Psoriatic arthritis means I ache in weird places from day to day.

I can take a vitamin D pill every morning and night. I can drink all the coffee my little drip maker can piss out.

I’m still going to be tired and achy because there are no cures for Psoriatic arthritis. Only treatments with fancy names and a laundry list of side effects that themselves cause me trepidation.

But I still go out and do things. I’m expecting to go out tonight for a few hours. Meet people, have fun. I’ll pay for it tomorrow but that’s okay. I’m going out again tomorrow. lol

Yes, some of us live with chronic pain. We have to manage our energy levels sometimes from hour to hour or minute to minute. We have good days and bad days…and bad days often coincide with days we have no choice but to get certain things done.

It doesn’t stop us from living.

We continue to do and to live not IN spite of it…but TO spite it.

Yep. I have exhaustion and psoriatic arthritis.

And they can both kiss my lily white ass.

A New Take on the Spoons Thing

There is this explanation about living with chronic exhaustion, that each day we have a set number of spoons and every activity takes spoons away.

It’s a very good and basic way of helping someone to gain a little understanding; but it doesn’t really grasp the pervasiveness of chronic exhaustion and pain.

The story starts with the woman holding out a dozen spoons for the day and asking her friend how to start the day. “Take a shower,” the friend says. But what about getting out of bed? asks the person holding the spoons.

Stop right there, says I.

Back up a step.

You woke up. You have to sit up and leave the bed.

Let’s take inventory in that moment, with your head on the pillow, having not moved yet. How many spoons are you holding at that very moment? How many spoons did you wake up with to begin the day?

Twelve may not seem like very many, but I sometimes wake up with zero spoons.

Imagine what it feels like to wake up with no spoons, with no energy to even sit up and get out of bed. I lie in bed for fifteen minutes trying to gather up one spoon to get up and go to the toilet. Or maybe I’m lying there for half an hour just to gather up a spoon in order to sit up in bed and gather that one to go use the toilet. It sometimes takes that long for the wooziness in my head to fade so I’m not dizzy when I get up to walk.

So how do I manage an entire day when I’m starting with nothing?

One task at a time with sitting to rest between. Once I’m mentally awake enough, I can start doing things with a little more gusto; but I still have to pace myself. If I’m going out on errands, I have to plan those errands for the least amount of walking and standing possible. I have to plan my purchases, or text home for someone to come down and help me carry things up the stairs. If no one is home to help, I have to pare down the heavy items and ask my husband to buy them and bring them home. Half a gallon of milk might be too heavy when added to everything else I’ve bought.

I remember one time when I was about 19 and working at a convenience store. An elderly woman asked me to carry the half gallon of milk to her car for her. She had osteoporosis and couldn’t carry it that far. At home, she had someone to help. I remember thinking how terrible it must be to not have the strength to carry half a gallon of milk. Here I am, understanding that feeling all too well.

When I get home from grocery shopping, I have a choice. Power through and get the groceries put away, or sit for five or ten minutes before doing that.

Making supper means breaking up tasks and sitting to rest between them, timing the meal more carefully.

Going places means plotting out my best commute and taking into consideration how many steps I have to walk up or down and at what point. Better to have fewer steps at the beginning so I’m not completely exhausted when I arrive. More steps on the way home is usually unavoidable, but more of them are downward rather than up, so it’s a little easier.

Everything is an effort.

I remember the strong workhorse I used to be. The workhorse I was just a decade ago.

I miss her.