Wednesday, May 30, 2012

My Jar of Spoons

When we write our blogs, we write for ourselves and for others.  Hope that someone who would benefit would find our blog.  Learn something from it, whether a new recipe, a new product or information. When I wrote about my fibro and how it affects me, I really hoped someone would read it that needed to know they were not alone.  That is what happened.

While reading the comments on the post, I felt like I did help.  I also learned of a site that I want to share with all of you. It is  This site is for those of us, and our loved ones, that have chronic illnesses and invisible disabilities to realize we are not alone.  WE ARE NOT ALONE. The founder of the website, Christine Miserandino, has lupus. She has dealt with lupus and the effects, since she was a teenager.

Christine has a way of telling people who do not have lupus what it is like to live with it every day.  How she has to plan everything she is to do or needs to get done in one single day.  To explain it, she has what is called 'The Spoon Theory'.  The theory uses a spoon for each step that will be taken during the day: getting up in the morning, showering, getting dressed, etc.  The trick is you only have 12 spoons for a whole day.  You don't get more if you run out.  If you borrow a 'spoon' from tomorrow, you start with less the next day.  I do believe this is the best way I have ever heard of explaining what we go through in daily life.  If we could tell all the lucky people, that don't live like this day-to-day, how it feels, maybe they would understand more.

When you visit her site, click on 'The Spoon Theory'.  I suggest you do it with kleenex close at hand.  I tend to 'wear my heart on my sleeve', but I doubt you will read this dry eyed.

My wish for today is for all of 'us' to explain to one person what it is like to live in our shoes.  Why we hope no one ever need live like we do.  I know that so many diseases have no cure.  Most of the time, the meds given to us have worse side-effects than the disease.  I don't expect a cure, but making others understand will make it better, for us, to take that disease, no matter what it is, by the horns, shake it around and let it know who the boss is.

Remember that we do matter, we are not invisible, we are valuable, and we are not alone.

Have a restful afternoon.


1 comment:

  1. Deb, I'm so sorry that the fibro monster haunts your life. You know my sister Susan has it, also, and it's a great trial. Wishing you lots of "spoons," and an effective treatment, preferably a cure, for this devastating condition. {{{Hugs!}}}