Okay a definition of a spoon isn't really going to help so I looked around and here's what I found when I asked Google to define 'Spoonie'
Spoonie - noun This word refers to an absolutely brilliant article , 'The Spoon Theory' written by Christine Miserandino.
But then I noticed that that doesn't really explain anything, other than that Google has good taste in authors, so I delved deeper and found this.
Spoonie - Spoonies are people that live with a chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion...sometimes having an abundance, other times coming up short. Urban Dictionary
When trying to explain what life with Lupus was like, author Christine Miserandino stumbled across an explanation that has become so large that all of the people I know with a chronic illness identify themselves as a Spoonie.
Being a Spoonie means that you have monitor everything you do, weigh up whether the effort is worth the result and then use cutlery to try and boost yourself. But it also gives friends and family members a way to relate, spoons are like a little door into the world of someone with a chronic illness. It's something tangible that the outside world can pick up and understand, if my family notice that I'm running low on energy they hide spoons in my pockets or they find the biggest spoons they can to show me that they care.
Quite often people with chronic and invisible illnesses can be isolated from the rest of the world because it's so hard to explain why you can't do what they can. Saying you've run out of spoons or that you're already borrowing tomorrows supply gives them a physical picture to grasp, making it so much easier for both you and them.
I am a Spoonie and although it doesn't always seem it, I am very proud to be.
Thursday 14 August 2014
Tuesday 12 August 2014
R is for Rules
Rules - noun A set of explicit or understood regulations or principles governing conduct or procedure within a particular area of activity.
Unfortunately none of this comes with a manual and people always say 'Wouldn't it be lovely if life came with a rule book' but personally I think that would make life terribly boring. If everybody had to act in the same way, within the same guidelines, then wouldn't that make us all fundamentally the same person? Maybe, maybe not.
The point I'm trying to make is this; there is no right or wrong way to be 'ill'. I know I talk a lot about not being who the world wants you to be, but to be honest if that's actually who you're happy being then go right ahead. Nobody has sat down ,as far as I know, and written a set of rules on what a sick person should do. As long as whatever you're doing works for you then that's fine.
You should never feel that you can't do something because that's not what people with 'X' do, if you are a person with 'X' and you do it then that is what people with 'X' do. For example I'm going to a music festival in a few weeks and will be camping for 3 days, I've been told that obviously I'm not as ill as I say because going to festivals is not what people with Fibromyalgia do. Now, I don't remember reading that in the 'Rules and regulations for Fibromyalgia sufferers', maybe I lost my copy somewhere. But regardless of what people may think I know what I can and can't do and that is my decision, no one elses.
So don't let anyone else set the rules for your life. It's you life, live it however you want.
Unfortunately none of this comes with a manual and people always say 'Wouldn't it be lovely if life came with a rule book' but personally I think that would make life terribly boring. If everybody had to act in the same way, within the same guidelines, then wouldn't that make us all fundamentally the same person? Maybe, maybe not.
The point I'm trying to make is this; there is no right or wrong way to be 'ill'. I know I talk a lot about not being who the world wants you to be, but to be honest if that's actually who you're happy being then go right ahead. Nobody has sat down ,as far as I know, and written a set of rules on what a sick person should do. As long as whatever you're doing works for you then that's fine.
You should never feel that you can't do something because that's not what people with 'X' do, if you are a person with 'X' and you do it then that is what people with 'X' do. For example I'm going to a music festival in a few weeks and will be camping for 3 days, I've been told that obviously I'm not as ill as I say because going to festivals is not what people with Fibromyalgia do. Now, I don't remember reading that in the 'Rules and regulations for Fibromyalgia sufferers', maybe I lost my copy somewhere. But regardless of what people may think I know what I can and can't do and that is my decision, no one elses.
So don't let anyone else set the rules for your life. It's you life, live it however you want.
Q is for Quintessential
Quintessential - adjective Representing the most perfect or typical example of a quality or class.
Here's an example just so we all know what were talking about; She is the quintessential sick girl - depressive, ill looking and bed bound .
And here is what I'm saying to you...Don't be that person. Don't be what the world expects you to be, just because you have an illness doesn't mean you are ill.
Sure there are days when staying in bed is the only option but you don't have to lay there in half darkness moaning listlessly like a proper Victorian miss. Even with little to no spoons you can still make the best out of it, build a pillow fort, laugh along to your favourite film...do whatever it is you do to make you happy, or even just content.
Make yourself something else. Be something other than that sick girl or that disabled bloke. Be the guy who has an awesome origami collection (Origami, by the way, is brilliant for high mental but low physical spoons; it's fun and you get something productive out of it) or the woman with the best Olaf impression (The snowman in Frozen.)
Because no one should be the quintessential sick person. We are all so much more than our illness.
Here's an example just so we all know what were talking about; She is the quintessential sick girl - depressive, ill looking and bed bound .
And here is what I'm saying to you...Don't be that person. Don't be what the world expects you to be, just because you have an illness doesn't mean you are ill.
Sure there are days when staying in bed is the only option but you don't have to lay there in half darkness moaning listlessly like a proper Victorian miss. Even with little to no spoons you can still make the best out of it, build a pillow fort, laugh along to your favourite film...do whatever it is you do to make you happy, or even just content.
Make yourself something else. Be something other than that sick girl or that disabled bloke. Be the guy who has an awesome origami collection (Origami, by the way, is brilliant for high mental but low physical spoons; it's fun and you get something productive out of it) or the woman with the best Olaf impression (The snowman in Frozen.)
Because no one should be the quintessential sick person. We are all so much more than our illness.
Sunday 10 August 2014
P is for Pride
Pride - adjective A feeling of deep pleasure or satisfaction as a result of one's own achievements, qualities or possessions.
A lot of people will tell you that pride is terrible, shameful or a sin and I'm not saying that too much can't be harmful. It's just that people tend to forget that pride can be a brilliant thing.
Pride can keep you going when all else fails, it will keep you upright when you refuse to fall to down and stop you from showing the world the weakness inside.
Don't be afraid to let your pride show. You should be proud of who you are despite everything and because of everything.
A lot of people will tell you that pride is terrible, shameful or a sin and I'm not saying that too much can't be harmful. It's just that people tend to forget that pride can be a brilliant thing.
Pride can keep you going when all else fails, it will keep you upright when you refuse to fall to down and stop you from showing the world the weakness inside.
Don't be afraid to let your pride show. You should be proud of who you are despite everything and because of everything.
Saturday 9 August 2014
O is for Obstacles
Obstacle - noun A thing that blocks one's way or prevents or hinders progress.
Here is something vital to remember about obstacles, they can be overcome. It may take time and it will definitely take effort but if you're willing to put in the spoons then eventually even the highest mountain can be scaled.
That is how I see my illness. It's job is to put obstacles in my way, and it's my job to conquer each and every one, no matter how long it takes.
Because if someone builds a brick wall around you, how do you ever expect to get anywhere if all you do is stare at the inside.
You don't have to knock down the whole thing in one foul swoop. You could build a ladder, throw over a rope, chip away at the mortar or dig a tunnel; it really doesn't matter how you get past it as long as you get past it in the end.
Here is something vital to remember about obstacles, they can be overcome. It may take time and it will definitely take effort but if you're willing to put in the spoons then eventually even the highest mountain can be scaled.
That is how I see my illness. It's job is to put obstacles in my way, and it's my job to conquer each and every one, no matter how long it takes.
Because if someone builds a brick wall around you, how do you ever expect to get anywhere if all you do is stare at the inside.
You don't have to knock down the whole thing in one foul swoop. You could build a ladder, throw over a rope, chip away at the mortar or dig a tunnel; it really doesn't matter how you get past it as long as you get past it in the end.
N is for Never
Never - adverb At no time in the past or future; not ever. Not at all.
So this one is a little bit different to the rest, but it's full of things that I hear from fellow spoonies all the time.
Never let your illness or disability define who you are. You are an amazing person who just happens to have 'X'.
Never let anyone else define you by your illness or disability. It's not the main thing about you, don't let people treat you like it is.
Never be who the world expects you to be if you don't want to. You don't have to act a certain way because that's what sick people do.
Never give up. On anything.
Never lose sight of the person you want to be.
Never let the world drag you down. There will always be another day and another chance.
Never underestimate your own power. You are as strong as you want to be.
So this one is a little bit different to the rest, but it's full of things that I hear from fellow spoonies all the time.
Never let your illness or disability define who you are. You are an amazing person who just happens to have 'X'.
Never let anyone else define you by your illness or disability. It's not the main thing about you, don't let people treat you like it is.
Never be who the world expects you to be if you don't want to. You don't have to act a certain way because that's what sick people do.
Never give up. On anything.
Never lose sight of the person you want to be.
Never let the world drag you down. There will always be another day and another chance.
Never underestimate your own power. You are as strong as you want to be.
Friday 1 August 2014
M is for motto
Motto - noun A short sentence or phrase chosen as encapsulating the beliefs or ideals of an individual.
It's a little bit cheesey but I'll blame my ancestors. We have a family motto 'Verax Atque Probus' which translates to truthful and honest and it's something we all knew from being a kid. (There's mugs and pictures and a giant plaque on my garage door...we're cool)
So it doesn't seem all that weird for me to have adopted a motto of my own to remind me that things aren't as lost as they seem. I've wrote about it before and it's a fairly common saying but here you go; Everyday may not be good, but there's something good in everyday.
It just reminds me to keep going, keep fighting and keep looking for that silver lining.
Here's a couple of possible mottos for you, if you feel like you want to jump on the bandwagon:
It's a little bit cheesey but I'll blame my ancestors. We have a family motto 'Verax Atque Probus' which translates to truthful and honest and it's something we all knew from being a kid. (There's mugs and pictures and a giant plaque on my garage door...we're cool)
So it doesn't seem all that weird for me to have adopted a motto of my own to remind me that things aren't as lost as they seem. I've wrote about it before and it's a fairly common saying but here you go; Everyday may not be good, but there's something good in everyday.
It just reminds me to keep going, keep fighting and keep looking for that silver lining.
Here's a couple of possible mottos for you, if you feel like you want to jump on the bandwagon:
- You can't have a rainbow without a little rain.
- Living life one spoon at a time.
- Today you are you, that is truer than true. Noone in the world is youer than you. - Dr.Seuss
- Behind every beautiful thing, there is some kind of pain. - Bob.Dylan
- You never know how strong you are until you have no choice.
- Today you are stronger than you were yesterday.
- Learn from yesterday, live for today, hope for tomorrow.
L is for Laughter
Laughter - noun The action or sound of laughing. An inner quality, mood or disposition.
I'm standing by the clichè here so don't all jump at once. Laughter is one of the best medicines, it's just a fact. They take puppies into care homes and babies into hospitals to get people to laugh because if you have something to laugh about now you have something to remember when laughter is far from your thoughts.
There have been oodles of studies into why it makes you feel better so I've picked out a few results that might surprise you;
- Chortling lowers blood pressure therefore reducing the risk of a stroke.
- Stress and anxiety hormone levels can be lowered by a good ol' giggle.
- Chuckling activates T cells that will immediately start fighting any cold or sickness.
- A big belly laugh can get your heart beating at a similar rate to a moderate pace walk and burns just as many calories. Now that's an exercise plan I could stick too.
I'm standing by the clichè here so don't all jump at once. Laughter is one of the best medicines, it's just a fact. They take puppies into care homes and babies into hospitals to get people to laugh because if you have something to laugh about now you have something to remember when laughter is far from your thoughts.
There have been oodles of studies into why it makes you feel better so I've picked out a few results that might surprise you;
- Chortling lowers blood pressure therefore reducing the risk of a stroke.
- Stress and anxiety hormone levels can be lowered by a good ol' giggle.
- Chuckling activates T cells that will immediately start fighting any cold or sickness.
- A big belly laugh can get your heart beating at a similar rate to a moderate pace walk and burns just as many calories. Now that's an exercise plan I could stick too.
K is for Kink
Bear with me here..
Kink - noun A sharp twist or curve in something otherwise straight. A cause to form a sharp twist or curve.
'A kink in the armour' ...because it's now politically incorrect to say 'A chink in the armour', but I digress.
What I'm trying to say is that things might not always follow the path that you expect them to. You might not be the person you though you would turn out to be, but that is perfectly fine.
In nature there are no true straight lines yet we enforce so much order and formality on ourselves that we feel utter failures when our path gets a bit wobbly. Which is just ridiculous, there is no straight line to anything and the blessed people who seem to just have everything in one perfect swoop are lying.
Having a few wibbly wobbly diversions is good! A mistake is only a mistake if you don't learn anything from it, so look back on all the times when things haven't quite gone like you'ld planned and appreciate where you ended up. For example if I had followed the path I set myself when I was 16 I'd be working as a microbacteriologist - which may possibly be the most boring job in the world. But things didn't turn out that way, through no fault of my own, so now I'm doing something I love instead. It wasn't what i planned and yes some of those diversions weren't much fun but they led me here...to a bigger, better, brighter path.
Embrace your kinks. I mean your curves...your wobbles? I give up.
Kink - noun A sharp twist or curve in something otherwise straight. A cause to form a sharp twist or curve.
'A kink in the armour' ...because it's now politically incorrect to say 'A chink in the armour', but I digress.
What I'm trying to say is that things might not always follow the path that you expect them to. You might not be the person you though you would turn out to be, but that is perfectly fine.
In nature there are no true straight lines yet we enforce so much order and formality on ourselves that we feel utter failures when our path gets a bit wobbly. Which is just ridiculous, there is no straight line to anything and the blessed people who seem to just have everything in one perfect swoop are lying.
Having a few wibbly wobbly diversions is good! A mistake is only a mistake if you don't learn anything from it, so look back on all the times when things haven't quite gone like you'ld planned and appreciate where you ended up. For example if I had followed the path I set myself when I was 16 I'd be working as a microbacteriologist - which may possibly be the most boring job in the world. But things didn't turn out that way, through no fault of my own, so now I'm doing something I love instead. It wasn't what i planned and yes some of those diversions weren't much fun but they led me here...to a bigger, better, brighter path.
Embrace your kinks. I mean your curves...your wobbles? I give up.
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