Got Spoons?

I am a spoonie.

(For more information you can find The Spoon Theory written by Christine Miserandino here.)

I am happy to be a part of this community. This is a group of some of the most compassionate, honest, accepting, supportive people.

It feels a little bit like I've finally found my tribe.

But I also seem to have a hard time accepting my inclusion. Even after 4 years, I still dabble with denial.

This past weekend we all went out to do errands. I felt horrible but didn't particularly want to stay home alone and leave Mr. Amazing to get all the groceries and help Clone 1 shop for clothes (because this is not an easy task) so I piled into the car with everyone and hoped we wouldn't be gone too long and that I'd be able to manage the car ride and all the stops.

Four hours later we came back home and I took up residence in the rocking chair while pain took up residence in my legs. I had made it through the day with smiles and enthusiasm but it took every spoon I had.

The next day my symptoms were surprisingly at an ignorable level. I thought, See, I'm not a spoonie.

I did some laundry, made lunch, dyed eggs with the clones, washed the counter full of dirty dishes, hid eggs in the yard, managed to remember all the locations where I hid the eggs and walked around with the clones while they looked for the eggs, emptied the dishwasher, made dinner and pre-packed the clone's lunch boxes for Monday morning. The clones went to bed and again I collapsed into the rocking chair with pain in my hips and a knee that popped every time I moved it.

Okay, maybe I am a spoonie.

Again the next day I anticipated waking to symptom-overload but got up with ignorable levels instead. (Not a spoonie?) So I cleaned the bathrooms, dusted the living room and bedroom, did 4 loads of laundry including folding and putting away, took a shower, walked a letter down to the mailbox, worked on a crochet doll, made a casserole for dinner, played a game with the clones and then met with my pain in the rocking chair at the end of the day. (Definitely a spoonie.)

It was a string of full days. And I felt so proud of myself. But last night I tossed and turned all night while the pain repeatedly woke me up and made deep sleep impossible.

I woke up with nausea and a lump in my throat, pain still radiating in my hips and thighs, blurry vision, brain fog, dizziness and a feeling like my insides are being forced through a meat grinder. Mr. Amazing says, "You don't look so good" and I know I will accomplish little today.

It is so hard not to overdo it on the good days. I do this to myself over and over. It's like I never learn. I'm so thankful to feel good and have so many things I want and need to get done. I tell myself it won't wear me out, but it is never true. I might last a couple of days but it will always catch up to me.

How do I learn to balance all of this? How do I teach myself to take it easy when I feel good so that I don't feel worse later, even though I want to use my good days to accomplish something? Why is it so hard to accept all these limitations, even after all this time has passed? Is it because no one can tell me what is wrong with my body? Would having a diagnosis make any difference at all?

Do all spoonies struggle with accepting their limitations?

I've been working so hard on accepting my new reality but I don't feel any closer to acceptance. I feel like I'm in a constant battle between Then and Now.

I grew up on a raft, floating totally supported above the water, occasionally getting splashed a little but mostly staying dry and gliding effortlessly by. Now I doggie-paddle, my skin pruned and cracked from the water, my body exhausted, thinking if only I could find my raft...I reach out for it and keep fighting to get back to it but it is gone, swept away by the current.