Spoons, Spoonies and Energy!

One of the many things that I have learnt the last few days, is about spoons! I keep hearing about people in the EDS community running out of spoons, wishing that they had more spoons, and so on. So I asked Mr Google, and here is the story behind it all: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It’s worth a read, especially to really get your head around it properly (and also to give credit to Christine who coined it and good for her that it has taken on the way it has!!), but in a nutshell, back in 2003 (I think) Christine Miserandino who is a woman who suffers from long term illness, coined the “Spoon Theory” about the lack of energy that those living with certain chronic illness have each day. It came to her in a restaurant where the closest thing she could grab a whole pile of, was spoons, and used them to represent energy, and how powerless low energy sufferers feel that we are given only a certain amount of spoons each day, and that we have no choice but to use them up on simple tasks like getting out of bed! The theory is also that a healthy body that gets enough food and sleep, has a pretty much limitless amount of energy in a healthy day, but we don’t. Often there are simply not enough spoons to get through a day, some days are so bad that we wake up with none to even start with, and now and then we “borrow” a spoon from tomorrow in order to get through today, but then of course tomorrow we have will even less to start a new day, and sometimes even though today we only borrow a spoon or two from tomorrow, … tomorrow has no spoons at all!

My understanding is that Spoonies are people who need to measure and conserve their energy each day, and who never seem to have enough spoons!

I was born with hEDS and so I have never known any difference, and I have always struggled with energy, but another part of hEDS is that we produce way to much adrenaline, so even more so, I don’t LOOK like I lack energy. In the decades where I was deathly anaemic my Haematologists would look at my blood tests and then look at me, and so many times I have been asked how I am even alive, never mind so full of energy?!?! Little did they (or I) know that I was running on adrenaline and would go home and crash!

When my body said ENOUGH five years ago and just went into melt down, and I was diagnosed with having an active EBVirus in my system, I was put on a year of COMPLETE rest! It was the hardest thing that I have ever had to do. I was used to living on adrenaline and working long days through incredible pain, and my mind always ran a million miles an hour too, so to suddenly have to stop in my tracks and do NOTHING, was so incredibly hard! My mind was so exhausted that I was in a brain fog, and all I was allowed to do was puzzles on the iPad, I didn’t even have enough mental focus to read books! But eventually my mind was able to slow, and I found a new normal, and I have been conserving spoons for over four years now.

I wasn’t using that term, but I was pacing myself and learnt a ton of strategies which helped me to keep my mind and body sane and get through each day. As I built my strength again the assumption was that I would find a new normal, not the same as the old full speed normal, but something in between, and I have been VERY good at keeping to that and listening to my body, and rarely hitting walls!

But chronic pain is a very draining thing to live with every day, and since my fall in January my foot has added a massive level of pain to my life and sucked so much energy from it! These past 8 months I have been learning a new kind of rest, resting my foot, but as the rest of my body has crumbled from having to take on the extra load, the pain elsewhere (especially my hip) has intensified. I still need to avoid hitting a wall, but being out of spoons is just as strong an analogy for me, and simply having NO spoons is somehow more accurate to how I feel. The spoon theory also helps me looking ahead when I plan my day or my week, and I allocate spoons to different activities and manage them better up front.

For some reason the number fourteen is what popped into my heads. It’s a random number that is not measurable, but for me I am thinking of myself as having fourteen spoons a day. I need six to eight of them for physio, which leaves six to eight for the rest of the day… I’ll let you know how this looks and how it plays out, but today, when I came home from being away a week, and felt very anxious about coming home and actually LIVING my new normal, plus hitting the ground running with a hectic week of doctors, specialists, getting my new orthotics, and having my first wheelchair fitting appointment, I hadn’t thought that I will probably use my week up of spoons just on appointments! So when I got home just after midday today having booked all appointments, had a long one with my GP, and done my two hours of physio in the pool, I COMPLETELY ran out of spoons and hit a wall!!!

When HRH came home from work a few hours later after I had slept for a while, he said I looked like death warmed up … and sooo pale! Armed with all my new knowledge I have worked out that pale means I am dehydrated and I need more salt and/or sugar! Easy fix!! … the learning continues!

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3 thoughts on “Spoons, Spoonies and Energy!

  1. Oh, YES, I can relate to this one! I found that it takes me about a week to recover from a medical appointment outing. It’s strange having to live in this turtle-paced way, after so many years of running on adrenaline, hey? Sounds like you’ve made some significant progress in your pacing skills. Pacing and resting are the hardest skills I’ve ever tried to master as well. They go against the most basic natural inclinations I have: to be busy, to work hard, to help others… I’ve got an ME/CFS board on Pinterest with a collection of interesting – and some very funny – quotes relating to fatigue. Feel free to have a browse next time you’re feeling the spoonie frustration! Love, Kristy xx

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    1. Thank you! I read all that nodding my head all the way! I will definitely check out the Pinterest page! AT the moment I am still having about 5 appointments a week (I can’t have more than one a day) … and finding it quite exhausting, but having a specialist for each part of my body means that it is lots of different doctors and as they all want to do their own tests and experiments many of the appointments are those as well … so it WILL slow down in a couple of months I hope 🙂

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