Following my first post, where I explained the term ‘spoonie’ briefly, I thought I would write a little more about what this means. (Apologies to those of you who are fully aware of the term ‘spoonie’. I do not wish to teach you to suck eggs, obviously, it just felt like the natural thing to follow with). 

What is a ‘Spoonie’? 

‘Spoonie’ is a term used by people with chronic illness and stems from Lupas blogger Christine Miserandino who explained her lack of energy using spoons. Christine’s article The Spoon Theory can be found on her website https://butyoudontlooksick.com. It’s a beautifully written account of a discussion between herself and a close friend who asked Christine to explain what it is like to live with Lupas. A very emotional piece, if you can relate to it, and a perfect account of what it is like for most people living with chronic illness.  

For me, it is precisely what it is like for me day to day and reading it really made me feel that someone out there knows exactly what it’s like. That someone understands what it feels like to have to plan your day. To have to plan the activities you can do that day, like the household chores, but the little things too, like washing your hair or getting dressed. What you can wear even, depending on what pain you woke up with that morning. Can I pull socks on? No, then I’ll wear those little pumps to work then that don’t require socks. Can I do up buttons? No, I won’t wear that shirt then, or, I’ll wear leggings today not trousers.  Put simply, it’s how many spoons you need for each activity you do. Some activities require more spoons than others – the more strenuous the activity the more spoons you need. If the person does too much in the morning, they will not have enough spoons left for the afternoon or the evening. Someone with a chronic illness may be able to do something in the morning or the afternoon but not both.  

I’m going to give you an example here. Your total allocation of spoons for the day may be 15 spoons. You may or may not need to deduct one or two straight away if you wake up with pain. A shower will cost you one spoon, as will getting dressed. Doing the laundry will cost you two and hoovering the stairs will cost you three. It’s now 10am and you’ve already used nine spoons. This is without children, work, school runs. Every activity we do costs one or more spoons. Where a healthy person may have an unlimited supply, a chronically ill person only gets a limited number per day. These must be planned for and used wisely. I have tried to write how this feels day to day but Christine Miserandino writes exactly what I want to say. “Everything everyone else does comes so easy, but for me it is one hundred little jobs in one…… When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”, (The spoon theory, 2003). I have to push myself. Force myself, to do things most days and I suffer chronic fatigue with my condition so forcing myself to do things on days I am exhausted and in pain can be extremely difficult.  

Did I Go Out Last Night?

There is nothing worse than waking in the morning and feeling pain right away. I always wake with stiffness; I lay in bed and stretch for a few minutes before getting up. Some days require longer than others. I set my alarm on mornings I know I have to be up to allow me the time I need. This is all fine and even with little ones running about early, I can usually do this. Waking with pain is a totally different experience. It can literally affect my mood for the rest of the day if I let it, (and there are days I do).  

Pain can be literally anywhere and effects those suffering with AS differently and in different ways. For me, one of the worst pains I hate waking with is pain in my feet. At its worst my AS caused significant pain in my hips which, ultimately led to me being unable to walk. This was obviously the worst pain and happened over a period of time during a longstanding flare and a whole other story, (which I am not ready to write about yet). What I am talking about, is general day to day pain because it never goes away. No matter what medication I’m on. No matter what day it is or how bad, the pain is there every day.  

Some days it is bearable, others, hardly noticeable but there are days when it is really unbearable and if I have pain when I wake up in the morning, I know that means it will be a bad day. That the pain will get worse and probably spread to other areas of my body throughout the day. Foot pain is this type of pain and it pisses me off the second I feel it when I wake up.  

The best way to describe it, and this is just me remember, but for me, it feels like waking up after a long night out. That feeling you get in the balls of your feet and edge of your heel because you’ve worn those ridiculously high shoes out and then danced all night long. The shoes you know will hurt your feet. The shoes you know you can’t really walk in, let alone stand up in one place for long periods in, but the shoes you wear because, well, they look great and they make you feel great wearing. That dull throbbing pain you get as soon as you wake up and move your feet in bed. That pain that makes you say to yourself ‘I knew I shouldn’t have worn them out last night’ or ‘next time I go out I will wear those other ones and save those for when I go out for dinner’. That pain you wake up with after a night out, I wake up with most days. That, together with the fatigue feels like the morning after the night out, minus the hangover.

Those days it can be so hard to get up and carry on doing things I need to do. It does really get me down some days because I know I won’t be able to do much that day and I will have to try and stay off my feet as much as possible. Only doing what absolutely has to be done, which, I find really frustrating, especially on days I have planned to do things. But the really frustrating part, is how it can impact on my general day to day tasks. Just walking from the lounge to the kitchen to make a cup of tea, or get a snack for one of my boys is a massive effort. I have to prepare myself for the pain I will feel as soon as my feet are on the floor and it just makes anything I need to do that much harder.  

Its the Little Things 

One everyday activity that a lot of us have to do, is the school run. We live only half a mile from the school which, I love because it means it is totally walkable and is great for the boys and for me. It is also on an incline the whole way so gets the heart rate up and strengthens all key muscle groups on a round trip, very much needed after having a baby recently. (I will admit, I do drive when it’s raining). This is great for us as a family. We moved a little over a year ago from an area where schools are really spread out and a walk to school just wasn’t an option. So, when we were looking at areas to move to, one thing we had to be able to do was be within walking distance from a school. It’s great for exercise, a good start to the day for the boys, and me, and will be great in promoting their independence as they get older.  

There hasn’t been much school this last year due to Covid and I am currently on maternity leave, so have plenty of time in the mornings at the moment now they are back and, I have to say, I am loving our little walks to and from school. With a phased return across year groups, I’ve been able to spend some quality time with both boys on a one to one. My second child is nearly five and in his first year of school. He chats away as we walk to school together and tells me all kinds of things, what he likes to do, tells me about his day and other random things that, otherwise, I would know nothing about.  

During one of our morning walks to school the other day, he stopped suddenly, grabbing my arm to stop me. I first thought he’s forgotten something or had seen something of concern, we’d had quite a nasty storm the night before. When I asked what was wrong, he just said ‘it’s fine, I thought I heard an owl’ then told me what sound an owl makes which he then demonstrated, very loudly, for the remainder of our journey to school. But I love seeing the world through his eyes. If I had given in to the pain and fatigue that morning, I would have missed that, gently annoying but oh so happy, owl sound, all the way to school.  

Look for the Joy and Look After Your Spoons

It would have been so easy to just have got in the car that morning. It would have hurt a lot less pressing gently on the pedals then walking up that hill, but I am so glad I didn’t. I know my limitations and whilst, I should have rested my feet that morning and, without children, I probably would have, I am so glad I didn’t. For the remainder of the day, well, until the afternoon school run, I did just that. In the hope that, the next day, the pain would have eased enough to do more and in the knowledge that if it doesn’t, that’s okay too because it will do. Until then, I will ride it out, and enjoy the time I have now to rest, be it playing with the baby on the floor or, cuddled up on the sofa with my 7yr old watching movies or, making things out of Lego because there is still joy to be had and the housework will still be there tomorrow.  

Yes, I have to manage my spoons and yes, how many I use today will impact on how many I get to start off with tomorrow but, I am learning to listen to my body and understand when it needs to rest and when it should be pushed that little bit harder. But most of all, I am learning to be kinder to myself. To not feel as guilty for things that are outside of my control and instead control the things I can, except for mum guilt, (I don’t think that will ever go away), but if I can’t quite do the physical game the boys want me to play, I will instead think of another we can do.  

Learning to let things go is hard, really hard, and some days I can’t do that but I am trying and I guess that’s all we can do. As for the pain in my feet, if anyone, has any advice around managing that one, please let me know.  

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For more information on Ankylosing Spondylitis go to the following pages:

Homepage | National Axial Spondyloarthritis Society (nass.co.uk)

Ankylosing spondylitis – NHS (www.nhs.uk)