Hey all! Keith here;

Are you having trouble explaining to family, friends, healthcare workers, neighbors, etc. what it is like to live everyday in chronic pain? It doesn't matter if it is RSD, Fibromyalgia, Lupus, CFS, Back Pain, or Multiple Sclerosis, it is extremely difficult to have them fully understand how chronic pain affects every aspect of every day of your life.

An amazing woman named Christine Miserandino wrote an article called "The Spoon Theory". Some of you might have read this as it was being passed around on the Internet. But while she wrote it about her disease, Lupus, you could easily substitute the word RSD, or Fibromyalgia, or MS, for the word Lupus and it would fit perfectly.

If you want to share this article, please either refer loved ones, friends, etc. here to this page (we have a "refer this page to a friend" button at the top left of the page) or send them directly to Christine's page, as it is copyrighted information. Plus, this page, which Is going to provide an introduction and then a link to her site, and the Spoon Theory page on her website, will open up her entire website to you. There are a lot of amazing things there as her webpage title suggests, "But You Don't Look Sick.com

Here is an excerpt from the "Spoon Theory" from her website followed by the link to her site so you can read the rest of her story. I highly recommend it and then recommend you come back here and use the "Refer a friend" feature we have at the top of the page and send this to those family, friends, neighbors, etc. that just don't understand why you can do some things and not others.

Hope it helps everyone.

Peace and freedom from pain, it is all we seek,
Keith

My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born ...

... 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 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

These are some excerpts from this wonderful "Theory" but you get the idea.

For the complete story, please visit the following link.

THE SPOON THEORY  

If you decide to register for her message Boards there on that site I started one on RSD. You can also send her an email thanking her for her story, share your "spoon story" and much much more.

Do yourself a favor and let others truly know what it is like to live with chronic pain, not for sorrow or pity, NEVER for that. But let them see and experience firsthand, let them glimpse our daily choices and struggles. Then they might see places they can help us, see we aren;t "making it up" or "exaggerating our pain for attention". It may just change your life for the better!