We call ourselves "spoonies" for a reason!
Don't you love hearing the comment, you must be feeling better today--why? Why do they say this? Am I smiling, laughing or not limping..what makes someone say, "you must be feeling better today". I really want an answer to this statement.
I do have days that are worse than others, but for the past hmmm maybe 4 to 5 years, I've had pain. Recently things were just getting worse and worse. I'm on Remicade now and I do think it's helping. BUT and this is a BIG BUT---there is NO CURE for what I have. Those of us with "invisible illnesses" understand each other. It's much easier for someone with a sickness that can be "seen" in some way. For those of us that have diseases that can't be "seen"---it's more difficult. You may ask why? Well, because if you can see it, you believe it. That's simple enough!
We refer to ourselves as spoonies for a reason (and those of you with an invisible illness who do not know what I'm talking about you need this--it's very helpful). When I read this post I sooooo wished that everyone would read it. It would make it much more easy for those that don't understand to "kind of" or at least start to understand. So this is me...how I live...here you go...
Where "spoonie" came from. A great way to explain an INVISIBLE DISEASE. Or for me this is how I feel living with Ankylosing Spondylitis (AS).
I'm giving you 12 spoons--when you are healthy you expect to have a never-ending supply of “spoons”. I must plan my day, need to know exactly how many “spoons” I'm 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.
Count out you 12 spoons. You can't have anymore than these and there is no way to get more. Always be conscious of how many you have, and not to drop them because they can never forget they have (insert your invisible disease) Ankylosing Spondylitis (AS)--I certainly don't. It's here daily.
Now think about the tasks you do every day, including the most simple. Say them out-loud--each one will cost you a spoon. Getting ready for work-first task of the morning. That cost 1 spoon.
but let's back up because You don't just get up! You have to crack open your eyes--You didn’t sleep well the night before (spoon). The pain is so bad. You have to crawl out of bed (spoon), and then you have to make your self something to eat (spoon) 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. You haven't even gotten dressed yet. Showering cost another spoon! Getting dressed was worth another spoon. You cannot simply just throw clothes on when you are sick. I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my hips are hurting then sweats and if I am cold 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.
Are you starting to understand? Are you understanding you haven't even left your house yet? Do you realize you are only left with 6 spoons. Its very important to choose the day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrows “spoons”, but just think how hard tomorrow will be with less “spoons”. You also need to understand 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. So, you do not want to run low on “spoons”, because you never know when you truly will need them.
Think through the rest of the day--styling your hair could cost a spoon, skipping lunch could cost a spoon, or even typing at your computer too long. You are forced to make choices and think about things differently. Sometimes you choose not to run errands, so that you can eat dinner that night.
So you're at the end of your pretend day, and you are hungry. You only have one spoon left. If you cook, you won't have enough energy to clean. You can go out, but you have to actually GO. WAIT--I forgot to mention that you are nauseous. Smelling certain foods are not what you really want anyway.
Well it's early still and you have 1 spoon left for the rest of the night...what are you going to do...
This is how I LIVE EVERY DAY. Some days are worse than others. Some days I have more spoons. BUT, I can NEVER make it go away and I can NEVER forget about it. It's always here.
I'm just now learning to slow down, and not do everything. I fight this daily. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. It does frustrate me that I'm having to change my life. I must think about every little thing I do. You just do things--healthy people just do things without even a thought. It is in that lifestyle, the difference between being sick and healthy to not think and just do.
“I'm learning to live with an extra spoon in my pocket. You need to always be prepared.”
Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons”.
There are times that my day hasn't gone as I had originally planned, and even though plans were made to go to dinner with friends--that must change, because I don't have a spoon for that anymore. It's not that I don't want to go and do, it's that I just am not able---or maybe I know that if I do, it'll cost me 1 of tomorrows spoons.
Hopefully, this helps you explain or helps you understand what living with an invisible disease feels like--or for that matter a disease folks can see! Any disease or disability can relate to being a "spoonie".
Yes, I'm a spoonie! I have AS but it doesn't have me!
I do have days that are worse than others, but for the past hmmm maybe 4 to 5 years, I've had pain. Recently things were just getting worse and worse. I'm on Remicade now and I do think it's helping. BUT and this is a BIG BUT---there is NO CURE for what I have. Those of us with "invisible illnesses" understand each other. It's much easier for someone with a sickness that can be "seen" in some way. For those of us that have diseases that can't be "seen"---it's more difficult. You may ask why? Well, because if you can see it, you believe it. That's simple enough!
We refer to ourselves as spoonies for a reason (and those of you with an invisible illness who do not know what I'm talking about you need this--it's very helpful). When I read this post I sooooo wished that everyone would read it. It would make it much more easy for those that don't understand to "kind of" or at least start to understand. So this is me...how I live...here you go...
Where "spoonie" came from. A great way to explain an INVISIBLE DISEASE. Or for me this is how I feel living with Ankylosing Spondylitis (AS).
I'm giving you 12 spoons--when you are healthy you expect to have a never-ending supply of “spoons”. I must plan my day, need to know exactly how many “spoons” I'm 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.
Count out you 12 spoons. You can't have anymore than these and there is no way to get more. Always be conscious of how many you have, and not to drop them because they can never forget they have (insert your invisible disease) Ankylosing Spondylitis (AS)--I certainly don't. It's here daily.
Now think about the tasks you do every day, including the most simple. Say them out-loud--each one will cost you a spoon. Getting ready for work-first task of the morning. That cost 1 spoon.
but let's back up because You don't just get up! You have to crack open your eyes--You didn’t sleep well the night before (spoon). The pain is so bad. You have to crawl out of bed (spoon), and then you have to make your self something to eat (spoon) 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. You haven't even gotten dressed yet. Showering cost another spoon! Getting dressed was worth another spoon. You cannot simply just throw clothes on when you are sick. I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my hips are hurting then sweats and if I am cold 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.
Are you starting to understand? Are you understanding you haven't even left your house yet? Do you realize you are only left with 6 spoons. Its very important to choose the day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrows “spoons”, but just think how hard tomorrow will be with less “spoons”. You also need to understand 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. So, you do not want to run low on “spoons”, because you never know when you truly will need them.
Think through the rest of the day--styling your hair could cost a spoon, skipping lunch could cost a spoon, or even typing at your computer too long. You are forced to make choices and think about things differently. Sometimes you choose not to run errands, so that you can eat dinner that night.
So you're at the end of your pretend day, and you are hungry. You only have one spoon left. If you cook, you won't have enough energy to clean. You can go out, but you have to actually GO. WAIT--I forgot to mention that you are nauseous. Smelling certain foods are not what you really want anyway.
Well it's early still and you have 1 spoon left for the rest of the night...what are you going to do...
This is how I LIVE EVERY DAY. Some days are worse than others. Some days I have more spoons. BUT, I can NEVER make it go away and I can NEVER forget about it. It's always here.
I'm just now learning to slow down, and not do everything. I fight this daily. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. It does frustrate me that I'm having to change my life. I must think about every little thing I do. You just do things--healthy people just do things without even a thought. It is in that lifestyle, the difference between being sick and healthy to not think and just do.
“I'm learning to live with an extra spoon in my pocket. You need to always be prepared.”
Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons”.
There are times that my day hasn't gone as I had originally planned, and even though plans were made to go to dinner with friends--that must change, because I don't have a spoon for that anymore. It's not that I don't want to go and do, it's that I just am not able---or maybe I know that if I do, it'll cost me 1 of tomorrows spoons.
Hopefully, this helps you explain or helps you understand what living with an invisible disease feels like--or for that matter a disease folks can see! Any disease or disability can relate to being a "spoonie".
Yes, I'm a spoonie! I have AS but it doesn't have me!
Do you ever start out with less than 12? This must be a doozy of a day....:>)
ReplyDeleteYes sometimes there are less and sometimes you have more! When I DO I really think about what it is and is it worth giving up a spoon that might be needed later. Sometimes you want to save them up if you have something big you need extras for---like planning a trip shopping. But, then sometimes even when you do that you wake up sick..blah! It's hard to live with sometimes--but I try and stay positive and SMILE! :)
DeleteI just found your blog this morning as my pain is so bad I could not even make it ot Sunday School and Church. I hate talking about it, my Pastor called me, knew i've had a bad week and I told him could not do it. I'm in tears prying to god for away. You see it was easier when the love of my life was with fighting this, even after she made me retire because she knew I was in so much pain. She was the obly one that ever understood. You see I'm like you, that guy who is strong looking, hard worker, he can't be sick I jump around alott, sorry. My wife left me for Heaven in 2009 amd it's been hard but I've been so Blessed. But now the last six to eight months are the worse ever and I now live in East Texas on the Lake, our dream, now My Remicade has been stopped AGAIN. I've had three severe infections, had Shingles real bad the night I was at Bayloe while they were trying to save her life. But we talk earlier before she died, we knew it was time even after the doctors were telling me she would be alright in a few days. Colon Cancer, suddenly, she was with me only a year after we found out. At least I thank God we got to pray together and knew how much we loved each other, 35 years. Even in the ups and downs she never gave up on me, even when I was the worse oerson in the world to live with.
ReplyDeleteThank you again for your words, just wanted you to know I understand, I'll put you in my prayers. God Bless you and your family.
Marcus
thank you for putting into words how i feel every single day. it's true.
ReplyDeleteI had never thought of explaining then burden of AS with this spoon concept. I can relate to every. single. line.
ReplyDeleteI realize that I had never lived so consciously before this illness took over my body. As a matter of fact, I almost appreciate being forced to live more mindfully, consequentially. BUT the pain I must endure forever is no match for such a lesson.
I also started a blog a few months back and was surprised by the feedback. There seems to be so many of us. How come i had never heard of invisible chronic illnesses before? Nway, you are encouraging me to continue writing and reading other people's project. Thanks a bunch (http://spondymp.wordpress.com/)