I needed a different subject to take me away from my own ‘Brain Pain’ for a bit. Something outside of my head that wouldn’t force me to look internally and analyse my sanity (I do that too often).
What did I choose? Well, it’s been kicking me in the kidneys for some time now.
Pain.
Being a spoonie.
Before I explain being a spoonie, I’ll explain my physical conditions that have caused me to join the club. I have arthritis in my sacrum (located next to the pelvis), known as Sacroiliitis, as well as disc narrowing, degenerative changes and protrusions in my upper and lower spine. Day to day this means it’s difficult for me to walk, bend and stand still without experiencing pain. Some days are worse than others. I use crutches around the house and I have a wheelchair for when I’m able to go out. I really hate the chair – I’m always frightened people will laugh, be nasty and I’ll cause my family to be embarrassed or ashamed. That’s something I need to work on when I eventually feel brave enough to go outside again.
Anyway…
These are my most difficult physical pain symptoms poking their head around the door to my receptors on a day-to-day basis.
Living with chronic pain is like running a treadmill for 12 hours, from waking up to getting back under the duvet, with pain appearing randomly throughout the run, and at the end you’re exhausted and feel more pain than when you started.
For me, pain is always there but it can go up and down for a myriad of reasons. For some people the worst pain is their reality 24/7. I can’t imagine how difficult that is. Annoying though my pain-rollercoaster is, at least I have some periods that are better than others and in those moments I can rest or sleep.
Imagine being in so much pain that you can’t even drift off for the night.
That’s a reality for many of us.
To add the cherry on the pie, it seems most people are agreed that sleep rarely fixes the problem. It helps, but there aren’t enough hours available in Snoozeville. So…
What’s a Spoonie?
I have a page dedicated to being a spoonie on this site, but in a nutshell here is my own translation of the term…
The term ‘Spoonie’ came from the blog of a Chronic Pain expert (and Lupus patient), Christine Miserandino. My understanding is that she was trying to explain (in simple terms) what it’s like to live with chronic illness to a friend. She used spoons as a reference to show that gradually, with every task completed during the day, a spoon is removed from the persons daily spoon inventory. With every disappearing spoon the pain and exhaustion becomes bigger, until you are out of spoons and essentially out of energy.
S. Clark http://www.creativesteph.co.uk/spoonies accessed April 2022
Goodness knows why she chose spoons. It could have been plates, bread slices, matches…am I right? There are some more obvious analogies available, aren’t there?
Anyway, spoons were chosen, so spoons it is.
Since learning about the term years ago I’ve been trying to calculate the number of spoons I have available on a normal day. When I wrote the page last year I worked it out to be 10 spoons on an average day, it’s been up and down since, but I’d say that today it’s still a pretty accurate number.
What’s that like day-to-day?
Today is an excellent opportunity for me to write this post with some clarity, because it’s been a tough one. A quick caveat before I get going…Please bear in mind this is my personal story, which is the only one I have to use. Anyone who doesn’t want to read about my symptoms, chronic pain or being a spoonie is welcome to scroll down ⬇, or leave the page 👋.
Anyway, in a nutshell, here is a good day (it’s important to start positive, am I right?)
GOOD DAY
Spoons remaining – 10 spoons
I wake up with a hard ache in my lower back and stiffness in all 4 limbs.
I’m slow to get out of bed and to the bathroom while I try and get my temperature right (which seems to help, more on that shortly). Coffee and prescribed medication as quickly as possible.
Use both crutches to get to the bathroom. (-1 spoon)
9 spoons
Arm stiffness loosens slowly and legs are less ‘sticky’.
I spend 30 minutes doing the usual ablutions whilst sat down on the edge of the bath. Obviously the toilet first, then ‘shower’, brush hair (this is a horribly painful process for me, I’d love to hear if anyone else struggles with hairbrushing?!) and brush teeth, followed by face cleanse. (-3 spoons). Yes – it’s that hard just to get going.
7 spoons
On a really good day I’ll have a shower in the hope it’ll reduce the stiffness and give me some tranquility.
Most days I can’t shower. Having had multiple falls in the bath because of instability, I need to feel really strong and uber confident to do it. No, I’m not dirty. I still clean myself. If you instantly jumped to the conclusion that I’m disgusting, imagine how ashamed someone who isn’t able to shower every day because of pain feels? I’m a proud woman, and I’d love to stand under our steaming, steel rose every day. That squeaky-clean feeling is as desirable as a luxury holiday for me. But I can’t do it safely and I don’t see the point in lying.
Back to the spoonie agenda…
Ask for help to get in and out. Ask for help with planning the entire event (every step from taking my clothes off to drying my hair again). If I manage a shower, from start to finish I’m looking at 2 (ish) hours. It is both mentally and physically taxing.
But it feels good to be cleaned. It’s a pleasure to feel the warm water washing away my frustration and angst.
Spoons give with one deceatful, shiny, metallic hand, and take away with the other.
When it comes to the relationship between spoons and the bathroom, all spoonies are finding a way to stay as hygenic as possible while working around the chronic pain they’re trying to manage.
Onwards…
Leave the bathroom with the crutches and venture back to the bedroom to get dressed, another actvity performed on an edge…this time the bed. Dressing is difficult at varying levels (again, more shortly). (-1 spoon)
5 spoons
Gather everything I need around me on the bed. Laptop, iPad, diary, notebook and pen, face wipes, coffee, vape juice and pen, phone, charging cable and the book I’m currently enjoying.
Position a hot waterbottle/s at the site of the pain, usually get burned by the bottle, argue with myself about which is more tolerable – the pain and no burning or the burning and less pain. End up sitting hunched forward until the HWB is bearable. (-2 spoons)
3 spoons
Spend all day in that spot, changing my position when the pain sprawls itself across a new part of my being.
Ask the pain to ‘fuck off’ and cry for a bit.
Eat all meals in the same spot.
Watch the television in the same spot.
Write (as I am now) in the same spot.
Draw in the same spot.
Read, laugh, cry, talk, learn, ponder, delight, romance, change, argue, charge and drink FROM THE SAME FUCKING SPOT.
Sometimes I’m able to get comfy, write, draw and listen to a podcast and keep the pain at a level I can handle. I call it the ‘sweet spot’, but it’s a house of cards and often the tiniest movement sends me back to square one. Every now and then I manage to make that jigsaw piece fit pretty perfectly, and it’s blissful.
The problem is any change, any change AT ALL, to the status quo. The postman knocks, the phone rings, a support worker vists, the window cleaner randomly arrives, there’s bad news in the media, we’ve changed the bedding, I feel shakey, my medication made me throw up….there’s a myriad of things that happen throughout any normal day and they all require spoons.
Lets say 3 of the ‘random events’ above happen on a day…that’s being conservative. That leaves me with…
0 bloody spoons.
None! So if I want to play a game with my daughter, invite my partners family over, eat dinner at the table, put on my make up…whatever I want to do, I have nothing left to do it with.
I try to get my own food and drinks, but, to give you an idea, if I venture to the kitchen to grab a Pepsi Max, by the time I’m pouring the drink I’m having to tilt to the left to reduce the pain on the right. By the time I’m back in the bedroom I’m desperate to sit and reduce the grinding. I can feel it now, deep in my right, and it’s awful.
Eventually, after the spoon drawer is empty, I try to sleep (and fail miserably 🥱) and start over tomorrow.
I don’t recommend loaning future spoons, but you can at a price. More later.
So…now you want to know about a bad day. Only small changes are made to the description. It’s the effects that change drastically, which I will try and explain.
BAD DAY
10 spoons (I always start with the same number. Alterations through loaning have consequences – details coming up)
Wake up with a hard ache in my lower back and stiffness in all 4 limbs.
Slow to get out of bed and to the bathroom while I try and get my temperature right. If the temperature isn’t comfortable I find my pain is infinitely worse. The stiffness in my legs specifically makes me feel like the tinman – in need of oil and terrible at acting. And that pain will have automatically enfused itself in my spine, where the disc narrowing makes things even worse.
Temperature often sets the tone for the day.
Coffee and prescribed medication as quickly as possible.
Use both crutches to get to the bathroom. (-2 spoons (increased because of the pain caused by temperature)
8 spoons
Ablutions in the bathroom. Struggle to sit on the cold toilet seat and balance on the edge of the bath. Drop my toothbrush/soap/toothpaste because I’m shaking and take forever to find a way to pick it up again.
Dry off, brush hair, wrap hair, brush teeth, cleanse, deoderise and talc up.
On a painful day, these become arduous tasks. (-4 spoons)
4 spoons
Leave the bathroom on crutches, go back to the bedroom to get dressed. Get dressed slowly and eventually surrender because the feeling of the material against my skin is comparable to nails on a chalkboard. I can’t stand it. So if the pain is really bad (like today) I can’t get dressed at all, I just stay in my pyjamas. As a proud woman, that’s a horrible reality. (-2 spoons)
2 spoons
Gather everything I need around me on the bed and position hot waterbottles (made by my partner) wherever needed. (-2 spoons)
0 spoons
Navigate the rest of the day with such trepidation that I’m virtually paralysed with fear over an unexpected event. My spoons are depleated. Eat, write, draw, watch, read or (most likely) just lay there.
It’s unlikely there’ll be any added extras on a day like this. In fact, on a painful day, on a day where joints are screaming and you can’t work out how to think let alone be, an added extra can be disastrous.
What happens when they run out?
Someone snarky is probably thinking ‘well she’s not dead, is she? So this is obviously bollocks’.
Wrong.
Spoon depletion doesn’t signal the rapture. But if the drawer is, once again, empty and you are having to force pain and energy into something pressing or unexpected, you’ll be loaning from tomorrows drawer.
Tomorrows drawer has a bailiff dressed in a black trench coat with a reposession notice in hand. That bailiff will take away todays loaned spoons the second you wake up tomorrow, and reduce what you have to play with.
Real talk? You’ll be exhausted. Running on fumes. You can only hope that you are loaning from a pain-free or non-challenging day, that way you can rest and try to redress the balance. Getting in to a payday loan situation, robbing Peter to pay Paul every single day…you’ll eventually be spent with no option other than rest until you can face the world again.
It’s a perpetual problem for those that suffer with chronic pain. You can’t bank your unused spoons (if you’re lucky enough to have any), but you can loan tomorrows, which makes it very difficult to get back to ‘normality’ (whatever that is).
Many high profile people have berated patients suffering with chronic illnesses such as ME or Fibromyalgia. It makes my blood boil.
In my opinion, you can only really criticise something so thoroughly if you’ve walked in a pair of Crocs worn by a Fibro-mum, trying to pick up her kids from school, with the pressure on her tyres needing attention, laundry piled like a skyscraper, only a crust of bread left, unable to afford her gas bill, and in the throes of a flare-up.
It’s very real.
A full and thorough overview is available in this Spoon Theory PDF, which is incredibly informative and better at explaining things than I’ll ever be.
In conclusion
At the end of the day, after this tiny amount of to-ing and fro-ing, I have nothing left to eat my soup with. Spoonies have only forks, knives and their hands.
So I have a burger instead*
If you know a Spoonie, whether they are aware of being in the club or not, offer them a hand if you can. Folding laundry, making a cuppa, finishing the washing up, bringing your kids to play with theirs – anything you can do to lighten the load.
And if you’re a Spoonie yourself, I wish you nothing more than infinite spoons.
Thanks for reading.
*Other HEALTHIER foods are available (but not as delicious). Diet is important. Eating nutritious food is more likely to help than eating sugar-rich carbs that are known to impact mood and physical health symptoms negatively, in the long run.
Creative Steph 