You might be thinking, “Well, Vie, I didn’t know you had a fascination with cutlery!” Or you might now have, as I do, the theme tune for Button Moon, following Mr. Spoon, singing in your head (here you go: https://www.youtube.com/watch?v=gu0o6u1VmGE ).
It’s neither of those things, though, who doesn’t appreciate a lovely bit of silverware 😏.
Spoon Theory was devised by Christine Miserandino in 2003 following a meal with a friend where she tried to explain what it’s like to live with chronic conditions using the cutlery that was nearby.
So, what is it?
Spoon Theory works on the premise that everyone has a set amount of spoons to get through every day. A person who lives with no disabilities or chronic conditions may have 25 spoons to get through their day. To get up, have breakfast, shower, dress, might take one spoon’s worth of energy; getting dressed for a party, going to the party, talking, dancing, drinking, may use up three spoons. Most days, there will be a surplus of spoons.
Now, a person with disabilities and/or chronic conditions may have 12 spoons a day. That’s less than half the spoons a non-disabled person may have. You might think, with so little spoons, that we’re all experts in managing how we use them; however, that often isn’t the case, try as hard as we may, because different activities take up different amounts of spoons for different people, of all ages, at different times.
I thought I would share about my days and my spoon usage. Before I continue, I will share with you that, as I write this, I was meant to be on a brilliant networking and support session but, as I know I am very tired and in lots of pain today, and that I wanted to write this blog, I had to give up one or the other. The irony that I am using my last spoons to right about being a Spoonie 🙄.
Ideally, I prefer to wake up when my body wants to; needing to set an alarm means I wake up earlier than my body wants to, which immediately means I am already down a spoon. Let’s say that, for the purposes of this blog, I have slept until I needed to, so I have a full amount of spoons to start the day with.
I get up. I put on my dressing gown, go to the loo, make my breakfast, then sit down. Sounds simple enough. But it isn’t. It hurts. I am stiff from being mostly still all night and, on touching the floor with my feet for the first time that day, I can feel all of the blisters* and raw spots. Holding the knife to butter and cut my toast, and the banana to go on top, shears some skin on my hand. Opening the bottle of juice, even through the tea towel I hold to do it with, takes more skin off. If my partner isn’t working from home, I can’t have a cup of green tea, as picking up the kettle to fill it causes aggravation to one of my other conditions**. All of this is at least one spoon gone.
I sit and eat my breakfast, slowly, as, if I don’t chew the toast sufficiently enough, I risk the larger pieces scratching my throat and causing blisters. I catch up on social media, and I do a quick internal scope of my body to see which bits are hurting, so I know whether I have to be extra careful that day. Another spoon gone.
I have a shower. Climbing into the bath to have the shower, then climbing out again when I am done, one spoon; I need to wash my hair, that’s another spoon, because it hurts my arms to lift them.
I get dressed. Again, not as simple as it sounds. I have to put a special talc on the places of my body where I am prone to have shearing skin, and I may need to put dressings on my feet. Then it’s doing up buttons or zips that cause my hands to shear. Getting dressed equals at least one spoon.
I have a networking Zoom call. I really enjoy it but following all of the conversations, focusing on the screen, sitting still, all costs me another spoon.
I’m meeting a friend for lunch. I walk to my local cafe, half a spoon. I sit down, look at the menu, get up when my friend arrives to give them a hug, sit down, get up to order, sit down, chat, laugh, eat; it’s wonderful; and it’s tiring. One spoon. And, because I am more tired, walking home takes up a whole spoon.
I get home and I have emails to send and answer; I am very tired now so it takes longer to focus and to get comfortable. Another spoon used up.
I have another Zoom call; because I am tired, it is more of a strain; another one and a half spoons gone.
It’s 5pm and I have one spoon left to get me through the rest of the day. By the time I have eaten dinner, thankfully made by my partner, I am slumped on the sofa.
You would think, being this tired, I would get up and go to bed, but, by this point, I am in so much pain that, once I get comfy on the sofa, I want to stay there. So I sit, and I sit, and, as I get even more tired, the thought of standing up and moving just feels too much. I finally get enough energy to get up to go to bed in the early hours of the morning.
If I can sleep until I wake up naturally, I should be able to start the day with an almost full quota of spoons. In theory. So many things can impact on how many spoons get used.
Did I pass someone in the cafe who could have passed a cold or something to me? Did I eat something that caused my mouth or throat to blister (I am very careful about what I eat, knowing which foods can cause blistering, but, sometimes, something sneaks in, or it's just an anomaly)? Or have I blistered from the walk? Or blistered from just sitting down? Was there uneven ground that made walking hard? All of these things, and many more, will impact on the amount of spoons I have available.
Then there are the days where I have to get up to my alarm, or the days that are very busy, or the days that I am completely living my best life, with dancing and talking, or learning and laughing, that can drain me completely of spoons.
Some of you reading this may think, well, why would you do these things if they exhaust you and cause you pain? And I will always say that, if I am doing things that make my mind happy, it’s far easier to deal with all of the physical stuff. I want to live as full and happy a life as I can with the body I have. And, thankfully, my partner understands this and does most things around our home so I don’t use extra spoons. He is also the one that I trust to take off my shoes if my feet feel too far away, and sometimes needs to get me undressed because my mobility is lessened, or my pain levels are so high.
As the reader, you may be thinking how you can help those of us that are spoonies. The suggestions I make now aren’t going to be the same for all of us, so the best thing to do is ask.
Believe us! Just because we might not be saying we’re in pain, or tired, it doesn’t mean we’re not. And, for many of us, if we do tell you, it could be really bad.
Don’t judge us. We may not do things the way you would but trust us that we are doing the best we can.
Please don’t insist that yoga/pilates/turmeric/kale will “fix us”. Trust us that we have tried everything we can afford to and that some of our conditions just aren’t “fixable”.
Please don’t make “jokes” about how easy we have it, because we get “free money”, or a Blue Badge. Or how you always want to go out with us because we make things cheaper. I am sure that most of us would swap the Blue Badge for being able to walk distances, to not have to worry about the movements we make, to not be in constant pain; it’s hard for me not to turn round and respond with “live with constant pain for 20+ years then you’ll get this ‘bonus’”. And it’s more expensive to be disabled. One example from my life is my toothpaste; nearly all toothpastes burn my mouth and cause more pain, so I have to buy a children’s organic toothpaste that’s half the size of a normal adult tube and more than twice as expensive (Unless I can get it on a deal, I pay £6 for a 50ml tube 🙄).
Don’t assume we are lazy. Yes, I sleep later than most of you reading this but I need as much sleep as possible because sleeping is for rest and recovery. Before all of the conditions I have caught up with me, I was an early riser, getting quite a lot done before starting work at 8am.
Offer us lifts, whether we drive or not. Driving can be tiring, and getting public transport definitely is***.
Remember that we are human and we want to be part of our friends’ lives. Please invite us to things, even when you don’t think we can manage those things; though please do some things that we can do.
Trust us that we know the best things to do. Don’t assume that I won’t want to go for a walk because it will be painful for me, because I enjoy walking, though I do need to consider the difficulty of the walk. Don’t assume I won’t want to try something new.
I could go on, as this is a HUGE subject. I haven’t even covered the impacts of pain, or different types of pain, or the way new pain affects me. Or how different types of cutlery, and other random things, can affect me 🤷. Or … But, basically, trust us, believe us, ask us, because we really are the ones that know our bodies best.
Here are other blogs I have written that are related to things I mention in this blog.
*I have Epidermolysis Bullosa Simplex Generalised Intermediate, a rare, genetic, skin blistering condition. You can find out more here: https://www.vieness.co.uk/post/my-experiences-of-living-with-chronic-conditions-part-one
**I have Thoracic Outlet Syndrome. You can find out more here: https://www.vieness.co.uk/post/my-experiences-of-living-with-chronic-conditions-part-five
***I wrote this blog about a morning out and the impact public transport can have: https://www.vieness.co.uk/post/it-s-just
And, if you would like to learn ways of being more inclusive, generally, book a session with me and we can go through ways of how you can be: https://www.vieness.co.uk/services-7
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