If you follow me on Twitter you may have noticed me using the term/hashtag #spoonie. And if you DON’T follow me….Uhhhhhhhhh WHY NOT?! There’s no excuse for that! Click the Twitter link in the first sentence and get yourself to Twitter ASAP and click “Follow” under my picture! Go ahead! I’ll wait……..tick tock tick tock tick tock……..THERE! Now we can get on with business! GEEZ!
I have made some really terrific friends on Twitter. Some I already knew and some are new to me. A large percentage of my friends/followers are those who suffer with an Invisible Illness like I do. An Invisible Illness is a chronic condition that is….uhhhhh…well, invisible! If you walked past me in the mall you would not know that I am sick. There are no outward signs that I have the chronic illness of Fibromyalgia, Depression, IBS, Restless Leg Syndrome, arthritis or the pain from a bulging disc. I look perfectly normal (no smart comments from the peanut gallery are necessary, thank you very much)! If I were standing next to a perfectly healthy 43 year old woman smiling you could not tell which one of us suffers with the daily symptoms of any of those conditions. And THAT is an invisible illness.
Because you cannot SEE my illness it is natural for you to ASSUME I am perfectly healthy and feeling mighty fine because I am so breathtakingly beautiful (obviously I am joking) and so skilled at hiding all of my symptoms! You might think that this is a blessing to be able to go about your day being able to hide all signs of your illness. For some people that may be true. But for me, personally, I would rather have some sort of outward sign that I am NOT well just so people would not assume I am feeling perfectly fine just because I don’t LOOK sick. But that is just me. That is not true for everyone.
Because there are many of us in the world who live daily with an invisible illness of some kind we are not able to get out and about, shop, work or play like the rest of the population. That naturally means that our relationships are few and far between. The internet has been a wonderful tool for us. It has provided us with a means of developing friendships and having contact with those outside of our immediate family. A few years ago this comic came out and it rang truer then you could imagine:
That brings me back to where I started…#spoonie – a very smart woman, Christine Miserandino over at But You Don’t Look Sick came up with a wonderful analogy of what it is like to live with a chronic illness. While she lives with Lupus and I live with Fibromyalgia the analogy still fits perfectly. And it has connected those like us from all over the world into a special group of friends with chronic illnesses. I could never explain it better then her. So, here is a excerpt of her description of what it is like to live with a chronic illness or “be a spoonie”.
I quickly grabbed every spoon on the table; 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.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
Please follow the link to read her full explanation of the day the Spoon Theory was born. Not only will you understand ME better but you will have a better understanding of why all of us “spoonies” are bonded together in a friendship unlike any other. So, when you wonder why someone like me has to say no to something just ask yourself how many spoons would that take for me to go/do. It’s not always just a matter of whether I WANT to do something or not. It could be that by the time lunch rolls around I could possibly be out of spoons already for the day.
The next time you are putting the silverware away and you come to the spoons stop and think about the community of us spoonies out there. We would probably love to have the energy to empty our dishwashers. Instead, we are no doubt sitting on the couch with our laptops communicating with our spoonie friends inside our computers because that’s all the energy we can muster for the day even though we’d really rather go out to lunch and shop with the you and the rest of the world.
See why spoons are the most important utensil in the silverware drawer for people like me? Do you happen to have any extras to spare?