chronic fatigue / chronic pain / poetry / Spoonie Challenges

Spoonie Error 404

Author Amy M. Young and I are close friends; in fact, we call each other ‘sister’. Because we are both spoonies and our energies get zapped, we decided to come up with a message to tell each other when we’re too exhausted to be there for one another. Because we are web design people, this suited us fine:

spoonie-error

Spoonie Error 404: Looks like your spoons don’t exist.

Now, I’m guessing we’ve all gone to websites and clicked a link where we’ve ended up with Error 404: Looks like this page doesn’t exist. It’s frustrating not to have the information we seek, or to be denied what we want, isn’t it? That’s true with managing a chronic illness and/or disability that drains us of our energy. Many of us want to do so many things, but we’re prevented from carrying out tasks or seeing our friends. We make plans, but because of our bodies and minds, we cannot follow through. It can be extremely difficult, and requires a vault of patience from ourselves and our loved ones.

Lately, I’ve seen a co-opting of the phrase ‘I’m out of spoons’, by people who are not dealing with disabilities and/or chronic illnesses. To be frank, I wish this would stop. I reckon these people don’t know what it’s truly like to have to chose between washing yourself and making your meal. That’s the way it is when you are a spoonie. Some days you might have so little stamina, you must make a choice between eating and bathing. Other times, you might think you have enough spoons to get through the day when suddenly you realise no more spoons exist, and the great cash happens. It’s awful, to be honest.

What hurts me most is when I cannot be there when my friends are in distress. However, it’s important to be truthful at times like these. We can’t help people unless we take care of our own health. When we’re better, we can be of more use. We can tell people we really do care about them, and try to offer suggestions so they can receive the aid they need, but we must also explain that we’re too ill to help at the moment. In my experience, most people understand and are glad that I am sincerely concerned about them.

I find when you’re a spoonie, it’s unbelievably important to surround yourself with supportive people. It might also be necessary to let others go. If there are people in your life who refuse to respect your situation and won’t budge an inch, well, you have a decision to make. Personally, I cannot be around that negativity, and wouldn’t tolerate it from anyone. But I do understand that some people have difficult situations that they cannot get away from so easily. In that case, I hope you can find such stellar people to love you that they can lift you up to deal with the toxic folks. And I also hope a path presents itself so you can escape the toxicity. Having a loving support system will help immensely. Nasty people just steal your spoons in a hurry.

We spoonies have to muster so much strength just to do ordinary tasks. Let me emphasise that again—just to do ordinary tasksThings like: going from the bedroom to the kitchen, getting dressed, taking a shower or bath, calling someone, checking the mail, and heading to the doctor. Medical appointments, especially too many of them, can cause appointment fatigue. I am going through this presently. While all of my appointments are currently necessary, nothing drains my energy like an onslaught of them. Lately I feel like all I do is go to appointments for tests, physio, and doctor follow-ups. I told the doctor just this week that I need a vacation from my health!

I posted the Spoonie Error 404 image on Twitter on my author account at it got retweeted a good number of times. Seems like I’m not the only one out there. While I’m not happy that others are also suffering, I cannot help but be comforted by the solidarity of understanding that sometimes our spoons just don’t exist.

And now, a poem:

What do you see?
by Cait Gordon

You see me smile
and all the while
I burn, but not with love.
I burn and cry out to Above,
“Make it stop.
Please, make the pain stop.”

You see me out
and as I walk about
I ache, but not for you.
I ache and I so wish to
be the me who ran.
Just be myself again.

You see me cry
and wonder why
each tear falls,
when I don’t seem ill at all.
I need you to see
that this is the now me.

You see me, right?
You see me fight
for the little things,
for the joy each day brings?

No, I don’t think you see me.
And until you do,
I cannot see you.
I just cannot see you.

/cg


CGAuthorCait Gordon is an Irish-Canadian warrior princess and author of Life in the ’Cosm, a space opera about a little green guy who’s crushing on the female half of his two-headed colleague (Renaissance). Cait’s also the editor of the Spoonie Authors Network blog. And she loves cupcakes.

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