The Scleroderma Chronicles: Rocking the Spoonie Clock

I, along with a lot of other people with chronic illnesses, consider myself to be a “spoonie”. If you’ve never heard of spoon theory, it is a metaphor that describes the intricate bargaining game that those of us with limited energy resources play everyday to balance our activities with the little gas in our tanks.  Christine Miserandino developed the spoon theory and described it in an essay on her blog in 2005; trying to explain to a friend how she managed fatigue with her lupus, she grabbed spoons and used them as props to represent discrete energy packets. If you only have a limited number of energy units (spoons) to use in a day, you are painfully aware of how many spoons everything that you do costs. A shower? That is a spoon. Walk to the mailbox to pick up the mail? Another spoon. If you want to grocery shop, plan ahead. When the spoons for the day are gone, you are done. If you planned badly, you are basically toast. Get ready for some bad days ahead.

Owner and her cat.
Wrapped in layers of knitted goods, struggling to stay warm, MacKenzie and I enjoy a late night purr break at the height of my flare in December.

Early last December I ran through my spoons and just kept going for another couple of days. I knew I was headed for trouble, but I was in a situation where there were no other options for me. Take care of today and deal with tomorrow when it comes, I told myself.

Oh dear. The flare arrived and fatigue descended with a vengeance. I slept 10-12 hours a night and collapsed in exhaustion for a nap at least twice a day. If energy is counted in spoons, I was down to only about 10 for the day. Not only were the spoons my problem; it appeared that as soon as I got onto my feet and went into motion an internal clock started running. No matter what I did, I could not go more than 2.5 hours without a nap.

Christmas shopping!! AARRGGG!!!

Thank goodness for the internet. I made plans and checked the availability of items I wanted to buy using my phone while in bed. I made sure stores close to me carried the items that I wanted. I made shopping lists in a little spiral notebook that I carry with me (hello… brain fog!!) to help me remember what I’m looking for while in the stores. I planned shopping routes that were short loops that would take me to three stores/stops max and then get me home before my time and energy ran out. I planned the trips for times when the parking lots would be almost empty so I wouldn’t have to walk far.

So, one day I planned and cooked food for the week. Who knew making spaghetti was so exhausting? Before I could get the dishwasher loaded the timer on my spoonie clock went off and I was done.

The next day I made one of the loops. Whew. I got right up from the nap, started up the car and headed off to Kaiser for my monthly blood testing. Then on to Target… hurry, hurry, it has already been an hour. I finished that loop at the book store where I shared a laugh with a mom who was making the same stops as me on her own shopping route. She had also gone to the public library, though. She looked at me kind of weird when I said I had decided to not go to the library as it was too far to walk in from the parking lot there. Ugh. No way was I going to explain about the spoons to her. No time. My clock was ticking; I was at the 2 hour mark and had to check out and drive home. Hurry, hurry. I’m now having trouble walking because my legs don’t really want to go… Brain fog is starting to close in and my head feels buzzy…

Home. Nap. I didn’t even take the packages out of the car until after the nap.

Two more days, two more loops, and I had gotten everything and even got stuff mailed out on one of the loops. Careful planning, lots of patience, and an acknowledgement of my limitations went a long way in getting me through everything. Did you know that if you go grocery shopping late at night there is no line. True fact!

For more than a month I was careful with the spoons and never ran down my spoonie clock. I knitted in bed. I ate my little pre-planned meals and ordered things off the internet when I could. I took lots of naps, kept up on my meds, and did everything I could to manage my symptoms. The Turkish Hell socks lengthened as the list in my notebook got items crossed off.

Today I am through the flare and I must have at least 20 spoons a day. Maybe even 25. I’m rich!! The spoonie clock is up to 6 hours. That’s pretty darn good.

You know, people are always telling me how great I look.

If only they could see my spoonie clock ticking away.





Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

15 thoughts on “The Scleroderma Chronicles: Rocking the Spoonie Clock”

    1. It’s so frustrating because it’s something that can’t be negotiated and other people can’t see what’s happening. I’m so glad to be through it and oon the other side. 😼

  1. I was going through old blog post and you had mentioned scleroderma to me a few years ago. I had always meant to look more into it but, it slipped my mind.

    So when I came across your old comment I went looking for you and what do you know I wasn’t subscribed (fixed that) and here you are talking about it again!

    I think it’s time I looked further into scleroderma. Waving hello from my neck of the woods🙋🏾‍♀️

    1. Hello, and I’m glad you hunted me down again. I try to not talk about the scleroderma too much, but sometimes, when it is completely driving the bus, I feel compelled to write.

      I have the type of scleroderma called limited systemic sclerosis, if you go looking.

  2. Thank you for talking about this, Marilyn. Wishing for lots and lots of spoons for you and for patience and gentleness with yourself when you’re running out. XOO

    1. Oh, I am rolling in the spoons now!! So glad to be on the other side of this flare!!

      I’m fighting the urge to cast on even more knitting projects. MacKenzie wants a little blanket to sleep on (and I want to get my Find Your Fade shawl back. ).

  3. As a spoonie myself, I feel like reading my own story! Crashing for a nap without even putting the groceries in the fridge is something so common for me! I am having a massive flare right now and could only spend 30mins out of bed today.

    1. Oh, no. You are down deep. I have had days when I rehearsed in my mind getting out of bed, going to the kitchen, and making myself some food. So exhausting. There is nothing for it but to ride it out, but it seems to take forever. 😦

      I’m sorry this is your story too. In a way it’s reassuring to know I’m not the only one.

  4. I love the term spoonie clock! I’m sorry that Christmas shopping was particularly tough, but I’m glad you shared your tips. Thank you.

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