Becoming a person of limited mobility meant I added some words to my vocabulary. Words I hadn't heard of before but discovered because I researched different topics or followed a new person on Twitter. One of the words that suddenly relates to me and didn't exist in my vocabulary until I became a person of limited mobility: Spoonie.
What is a Spoonie?
The original Spoon Theory was written by Christine Miserande on 'butyoudontlooksick.com' and has since been used by people with limited mobility and/or chronic illness to explain how these physical challenges limit the energy one has on a given day.
From her original story, where she describes a moment in a restaurant where her best friend asks her what it really means to be sick, more than just the pains and the walking with a cane:
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
On Wikipedia a summary of the spoon theory is described as:
The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. "Spoons" are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
The original author explains to her good friend how having a limited amount of spoons means you have to think about every action you take because without spoons it literally is 'done' for that day. Now of course we all have limited resources, but there's a difference between feeling low in energy and being tired but being able to 'push through anyway', and literally not being able to get home, take a shower, or cook your meal because you've already spent your last spoon.
What is my level of Spoonieness?
For a long time I've struggled accepting I'm a Spoonie, too. The first thing you do when you get a physical constraint is find ways in which you can avoid the negative limitations it puts on you. So you find alternative ways to get your groceries, you finally start taking driver's lessons, you skip social events, accept other events will take a week to recover from, you go on road trips by car instead of taking long hikes.
But the fact of the matter is: you simply can't do a lot of things anymore the way you used to. But you forget. You accept. You adapt. But in the end it's true: you are a Spoonie. I have given away some spoons too soon which meant being literally unable to climb the stairs in order to get to bed.
How much CAN a Spoonie do?
I had a discussion with someone whose wife got a 'disabled parking permit'. He asked why I didn't have such a permit. "Because they need me to prove I can't walk more than 200 meters". And I can, I said. I can walk 200 meters. So I don't need / don't have a claim on that permit.
He then explained: "My wife can walk 200 meters too. But, let's say, she wants to get groceries. If she parks on any spot, she will already have walked more than 200 meters before arriving in the supermarket. Then she walks through the isles of that supermarket. She will have to stand in line to pay for her groceries. Walk back those 200 meters to her car now with kilos of weight in her hands too. She'll get home, have to park somewhere in the street, and walk more meters to our house. In reality she does all this while taking breaks in between and sit on a bench a few times. Afterwards she is tired for hours. CAN she actually walk those 200 meters or is it an illusion?"
It hit me: I just simply avoid all those things that I know are too heavy physically. I have created a support system and use a lot of online shopping and home deliveries to 'get my things done'. And although no-one really loves going to a supermarket, is it healthy I just partially removed myself from such a simple task completely and just simply accepted I can't do them anymore?
Too good at saving up on Spoons
The answer probably lies somewhere in between.
I don't have to do all the things I did before I permanently damaged my foot. I should be able to have the choice to do them and get all the aids I can get my hands on in order to have more options. But I can still choose to make my life easier by doing less of the things that hurt me and save on some spoons so I can do stuff that actually fill me with happiness and gives me back positive energy.
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Thank you! <3
A new term for Spoonie that is not to do with the Matrix.
This is such a huge lesson for I have never heard of spoon theory ever before. I was hit by a motorcycle in my back at a low speed in early 2015. Though it didn't any major issues, it physically limited my ability to do much especially bending. This means I can no longer do my laundry (done once per week) because I'll be in pain until the other week's turn. But I can still do that laundry if I wanted to but I choose not to while keeping in mind what it will do to the same body after I have. Thank you for sharing this! :)
Hey @tezmel, wow, that's quite a story you share here! I'm sorry you've been limited physically, it's so easy to say 'I was hit by a motorcycle' but I know that short sentence cointains a lot of pain, revalidation and confrontation with it <3 Thank you for sharing your story and I hope you're able to use the spoon theory maybe to share with others and/or explain your limitations <3
What a heartfelt post. Thank you for this level of yourself. It takes an enormous amount of courage to make this kind of revelation.
Which I obviously lack. I have a long term disorder that I don't ignore exactly but that I refuse to admit to. I live life on my terms, and reserve the right to run out of spoons once in a while. If you can't accept that I am completely out of spoons the door is right there. Please shut it behind you because I don't have the energy.
Thanks Soyrosa. Your story has given me heart. I appreciate it.
Hey @bigtom13! I truly appreciate your comment!
Being vulnerable and 'acknowledging' is not an easy step to take. I've ignored a lot of my 'stuff' in the past, but have discovered being open and vulnerable about it actually helps. I've 'opened up' a few times before and have often, later, getting back: "Thank you for doing this, because you opened up I was able to... [insert awesome action taking]" - so I've learned it's almost always worth it to do so.
It's still not an 'automatic' thing to do for me personally, but I do it anyway.
Thanks for reading and 'seeing' the courage, and for letting it 'give you heart'. Take your time and do things on your own pace,* it's okay*!
I have heard about this spoon theory but I did not know exactly what it meant. My brain fog did not help remembering the term, thus I never googled it to see what it meant. Thank you for the explanation.
When you have limited energy levels, you need to think your day in advance and try to plan it according to your limitations. It does not mean you can't have fun anymore! You just have to be more cautious not to deplete your energy levels/spoons otherwise you won't be enjoying your day. Yes, there are a lot more things that you need to do or pack before going somewhere, but it's better to be prepared. When we have a "normal" day we tend to forget our limitations and end up drained of energy which is so precious.
I'm so glad I could 'give back' the term to you @lymepoet! I've noticed people who care about us like using the term, because it can be so much easier to ask 'how many spoons do you have left?', than to try to understand what we mean when we say our bodies are sore, we're tired... I hope some people around you are willing to read it.
Yes, we need to plan ahead more, not just days, but also the whole week - 'that day is heavy so I calculate resting days two days after that one'. It's okay and as long as we indeed stay within our limits we can still do awesome stuff and have a lot of fun. It's a constant finetuning though :D
Great to hear this experience and relation of the word with that experience, i really influenced by the example of spoon means, we most of the time store lot of thoughts in our mind and we always overthink about that, and this overthinking phase always hold us to do or live our life freely. Thanks for sharing this post with us and wishing you an great day. Stay blessed. 🙂
Thank you for sharing your thoughts on this @chireerocks! I also believe overthinking limits us too much.
Welcome. 🙂
Did not know you have this in your life. It must be a challenge to have to keep such a close eye on how to spend your energy, on what to do and what not to do. Makes me appreciate your awesome photography work and lovely Steemit posts and growing success in this community even more!
Thanks a lot @amritadeva! I don't write about this topic constantly but the story is growing from time to time. These are sometimes sensitive / hard blogs to write so I gladly distract myself from them by sharing photography stories more, hehe ;-) Thanks for acknowledging the photography I do despite of the limitations, it's something I love so much that I know if I ever end up in a wheelchair I'll still find ways to take pictures! <3
its useful i liked it i hope the post most people see it and upvote this:)
Hi Rosanne, Thanks for sharing your thoughts and a new term. I have a a really good friend that this applies to (so I sent this post to her). What I appreciate even more is your openness and that I can learn how to relate and love and understand and help her even more. As a person with full mobility it is not easy to understand the long term limited mobility you are talking about. So thank you.
Thank you for commenting @sjarvie5! I love hearing that you sent the post to a friend! I hope she learns something from it. The term 'Spoonie' also helps people around you asking things like 'how many spoonies do you have today?', instead of 'how are you feeling'? (This question is often way more difficult to answer).
Thanks for your willingness to learn about limited mobility, and if you can let me know what your friend said about it?
thank you @soyrosa for sharing this part of your life with us, you should really just be doing what feel comfortable doing, and you alone are the only one who knows what that is. they are your choices and the fact that you wish to safe your strength for what you really love doing sounds very wise to me.
Thanks a lot @trucklife-family! Indeed these are my choices and I'm not planning to make life more difficult, but I do sometimes think I play it on the safe side - maybe challenge myself a bit more from time to time? :-) It's a continued puzzle :D
Ive heard this spoon story before! And back then it already made sense.. i think you could also make the jump to steemit. Spoonies use 100% vp and nonspoonies CAN use their slider ;)
I can image that you dont WANT to take the disabled pass because it also confirms what you dont want to.
One of my friends always struggles with rheuma and is also always weighing the facts. 'If I go with you guys now on friday, I will be dead until tuesday' she always says. So she weighs those options while we just jump in
Ah, yes, I totally understand what your friend means! It's really making choices not only to GO, but also to know you will 'not go' to all the other happenings the day(s) after :-)
Well, yes, to have a permit like that is also a huge step psychologically. Not only does it confirm my situation, I'm also very aware people are not able to see anything about me, I only walk with a cane on some days, most I do not. So well... It shouldn't matter but it does sort of matter to me how they will look at me.
Heck, so much to think about ;-)
Thanks for your comment!
Never heard about the expresion Spoonie, but it has a lot of sense.
I dislocated my knee 4 times and did not really do full checkup (need to check the ligaments...) i know i should but Serbia... So i kinda get that calculating what should or should not do. calculating how to get down from a 50cm high step is not what average people think about.
No, average people don't think about that! But I can totally relate! Sometimes 10 centimeters are hard for me too LOL. Or I can sit in a restaurant but not stand up from my chair for 15 minutes... Because suddenly the pain 'arrives'. Sorry to hear about your knee though, please try to get it looked after :-/
@soyrosa, the very useful post, maintaining health is the main thing, the success continues friends
This is new to me, I didnt know about this spoon theory and how it could be living this way. But when I think back on my own life,I have had at least one period that lasted a few months, when I really felt exhausted already when I woke up in the morning and thought about everything I had to do at the day. So I avoided most of the activities and stayed a lot in bed. Much love to you! xxx
Yes, you know how it is to feel limited, even from waking up! <3 Much love you you in return! <3
All days we learn something new, thanks!
I had never heard of spoonies before. But reading your story it makes a lot of sense. Thanks for sharing!! And I like your slogan of unlimited stories. Hope to read more of them!
"Je verhaal raakte me en ik heb er erg veel respect en bewondering voor hoe je er over schrijft en hoe je er mee omgaat"
Hey @bringolo, thanks a lot for commenting! I will sure write more episodes in this series, so stay tuned! :-)
Dankjewel voor je lieve woorden! <3
wow, i didn't know this about you. May I ask what happened?
I like your positivity about everything x
Hey @princessmewmew, sure you can! :-) In short: I permanently damaged a bone in my left foot while being on a 9-month sabbatical. It can't be operated on, so I have to learn to live with it. The exact story on the accident is written down here if you want to learn more: https://steemit.com/health/@soyrosa/limited-mobility-or-unlimited-stories-i-took-this-picture-only-moments-before-i-would-permanently-damage-my-foot :-)
Thanks for taking an interest! <3
oh dear, I just read the story. That's not good.
And you know, I can relate. I have never been able to see very well, and have always worn glasses. Since high school, until bout five years ago, I was lucky to wear contact lenses. Then, I stopped wearing them for about a year, and when I went back to try to get some contacts, I struggled to find a fit.
Fast forward five years, and I still haven't found lenses that can fit. My eyes naturally make a lot of proteins, which means usual contact lenses are out of the question.
I am actually testing a $1500 pair at the moment, and they are my last hope. If they don't work, my ophthalmologist has said he won't be able to help me. Perhaps I will consider surgery, but the issue with my eyes is muscular, and after some time, the surgery will reverse naturally. So I am not sure I want to spend that sort of money ($15000) on a reversible issue.
I live in hope and pray that these lenses work out!
Thank you for sharing your story with me x
Oh wow! Same here, thank you for sharing your story! <3
It's amazing how much we take our bodies for granted and how much of the worries people have about them we don't notice.
Eyes are so precious and such a big part of our experiences and communications, I can only imagine how much stress it must give you to not be able to see on the level you want and know this might be the last chance you have of finding good lenses.
I was also truly disappointed when my doctors told me 'there's nothing we can do' - OK UH WHAT?! We always assume there must be some solution to our problems, so it's a shock to hear 'no' from some of the brightest people on earth.
I'm going to think a lot of positive thoughts and send them your way, let's hope these lenses work out for you <3
@soyrosa I upvote this post. please i wait your support for my last post : https://steemit.com/hunger/@burabay/hunger-is-on-the-rise-again-in-the-world