Yesterday, a dear friend shared something with me that touched me so deeply that, for a time, I was wordless, unable to express the complex emotions roiling around inside.
For the rest of this post to make sense, I need you to read it, too.
It’s long, and about lupus, but you can insert chronic fatigue syndrome in there and fibromyalgia, and it’s absolutely the same. It’s about how we struggle to explain what it’s like, living as a chronically ill person who doesn’t look sick, but who is.
It’s called The Spoon Theory.
Read it? Good.
I read this sitting in the car, in the parking lot of the grocery store, while Rhiannon did a very fast shopping trip.
I was down to that one last spoon.
It took too many spoons to take a shower, and to go to the doctor.
Too many spoons at Walgreens, trying to find the heating pads, to sift thru the vitamins, and too many spoons standing up, looking at the ice packs, trying to figure out which one was the right size to fit our cover.
As happens when I’m too tired, my mind slowed to a crawl, unable to decide what was a good price or the right size or what we could afford. People call it “Fibro fog,” and I guess that’s as good as any name. It’s hard to explain what it’s like. Sometimes I can’t even form a coherent sentence. I sure can’t do math, which is what I was trying to do.
See, in CFS/ME and FMS, mental energy uses up spoons, too. A lot of people have a hard time understanding that.
When I get like that in a store, which is where it happens the most often, Rhiannon, who knows the signs so very well, describes getting me out of the store as being like “herding cats in Ikea”. I go this way and that, drawn to this item and then that one, trying to remember what I need to get, to make decisions which I’m no longer capable of making. Some of it is pure sensory overload.
Yesterday, Rhiannon took me by the arm & gently said, like a mother to a toddler, “It’s time to go, sweetie.”
We left without either a heating pad or ice pack, two of the three most necessary items on my list.
We moved on to the grocery store, and I sat waiting for meds to kick in as she did the grocery shopping, hoping I could focus my tired mind enough to drive home.
That’s what the last spoon was for, the one you keep tucked into your back pocket, knowing there will be times you need it.
As I waited for Rhiannon, I logged into Facebook, then read the Spoon Theory.
When Rhiannon got back in the car, shopping finished, I was strangely quiet. It took a few minutes, driving back towards home, before I could tell her about the Spoon Theory.
And then I told her that I didn’t know what I would do without her, and really, I don’t.
I told her how sorry I was that I’d run out of spoons before we got to the craft store, and she said, as she always does, “that’s okay, Mom.”
Rhiannon had wanted to go to the craft store so she could stock up on Halloween items on clearance sale. Halloween is the most important day of the year for her, and this Halloween, what with the snowstorm, was far from what she’d hoped for.
Maybe, I said, if I hadn’t taken a shower, I would have had enough spoons left for that. But I hadn’t had a shower in days, and needed it so very badly.
I told her how very sad I am that her life has been like this, with me getting more sick all the time, a slow spiraling free fall.
She doesn’t remember a time when I was well.
She has never seen me ride a horse, or chop wood.
She has only known watching me like a hawk, watching for a seizure after I nearly died from one, watching me to be sure I am okay, or as okay as I ever am, watching to be sure I’m focused enough to safely drive, watching me to be sure I eat…
The list goes on forever.
This is not the life I wanted for her, I told her yesterday. A mother wants only the best for her child, and dreams of all the good things they can experience.
Rhiannon was crying when I told her how thankful I am for her, every day, for every little thing she does for me, never complaining… the cups of tea she makes, the meals she prepares, the way she herds me out of the store when I can’t even think for myself, how she tiptoes when I have a migraine.
And then I told her I didn’t want her to put her life on hold for me, that she needs to be able to step out into the world and embrace it without always looking back at me to be sure I was okay. She said after she finishes high school, she was planning on going to community college before transferring to George Mason so she could fulfill her lifetime dream of working in conservation of big cats and besides, it would save money, anyway, and so she’d be here with me for longer.
She told me that she loves me, and I said, “I know, Rhiannon. I know you do.”
Then I told her how terrible I felt because she has CFS/ME, and that it’s because of me, that I gave it to her. She pointed out that it was the extreme stress of dealing with her father that was both her trigger and mine, that set this off in each of us.
Still, I feel terribly guilty for it all, for what she’s gone through in her life, and pray that she will be one of the lucky ones in whom the CFS/ME goes into remission.
She is my daughter, and I want only the best for her.
It breaks my heart that this is the life we lead.
That there wasn’t anything at all unusual about yesterday.
That every day is like this… always counting spoons.