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Saturday, June 11, 2011

The "Spoon Theory" and RA

     So, having just read and listened to the Spoon Theory by a young woman named Christine Miserandino who has Lupus I have to tell you that it really touched a nerve with me.  I want to thank The Rheumatoid Arthritis Guy (WWW.rheumatoidarthritisguy.com) for sharing this. He really has some wonderful stuff on his website including his own amazing posts and lots of great references like this one.
   So, what is the Spoon Theory and why did it touch me?  Well, you can read or listen to it yourself at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/  which I would certainly recommend if you want the full story but I am going to reflect on its meaning to me.
     In a nutshell, the Spoon Theory has to do with the difference in the daily options that "healthy" people have versus those of us with chronic disease.  The spoons are really a prop Christine used while at a diner with her healthy friend to illustrate that if you are healthy you have an unlimited supply of spoons to "use" as you go through your day.  Your possibilities and energy level are just fine, unaffected by the realities of RA. If you are not so healthy (RA and other chronic disease patients) you have a limited supply of "spoons" and you must carefully plan your day, deciding strategically what activities you can undertake in order to not "run out" of spoons before the day ends resulting in the pain, fatigue, and other realities etc. that we so often have to deal with.  RA folks have limited energy, options and possibilities when we are flaring and even when are not.
      The truth is that healthy folks wake up and from the moment they open their eyes they can go about their day with virtually the world entirely available to them physically speaking.  Not so for those of us with RA.  If our medications are working PERFECTLY then maybe this following list takes less time but often here is how it works: 1) When our day begins we open our eyes and take stock of how we feel- rested or not, sore and achy or not, alert or foggy, and so on. 2) We then get out of bed careful to stretch our muscles and activate our joints in such a way that we do no damage, the speed with which this happens directly related to our flare-o-meter, then we 3) make our way to the bathroom to "get ready" for our day which depending on how we are feeling often takes longer than it does for most people.  Something as simple as buttoning a shirt now "costs me spoons" because my hands are really flaring.  Most folks don't give this a second thought. 4) We then eat breakfast, notice I said eat and not cook or prepare as I no longer do much of that because the "spoon count" for me is far too high.  I try to make a simple yet healthy choice, not easy I must say, and now because I am still on prednisone I really CRAVE a big breakfast but my depression over my weight wins out and I have a granola bar and later in the morning an apple.  Already the day has hardly begun and the choices and limits of my life are apparent.  5) I head to work where I climb steps (spoons used here big time) and work at my desk for several hours "putting out fires" set by the work stresses the most folks deal with all the time but for me use up more spoons...how many depends totally on the day so THAT is not predictable at all.  6) I am in and out of the office with various responsibilities with my job often driving around Vermont, attending meetings, etc. so more spoons are used up and the day is not even half over.  Meals for the day are always a challenge as I mentioned earlier and social gatherings where I am expected to cook or provide food have become a nightmare for me.  More spoons....7) The work day is over and now I want to exercise - spoons left?  God, I hope so because without my exercise I am in trouble....obviously more spoons used here.  8) Home to do some chores like weeding, laundry, dog care, keeping the house in shape, etc.  MAJOR SPOON usage here! 9) Time to relax, unwind, read, watch some TV or a movie, and then  10) off to sleep...hopefully with a surplus of spoons or at least not a deficit...
     The key to this whole theory and how it related to me and why it so hit home is that I think I often have that "shortage of spoons" and then I wonder why I am not doing well at times.  It is so hard to live with any kind of spontaneity or variety in your life (like travel or unplanned activities with your friends) and still feel well enough to function.  I have not even mentioned the demands of RA on a relationship like marriage.  I adore my husband and I believe we have a wonderful marriage but I know it must be so difficult for him to deal with the effects that RA has on our life together....in so many ways....yet we are doing fine and I am so thankful for that!  
    Back to the spoons....thankfully I am person who likes order and routine to some extent and now I wonder which came first the RA or my desire for order and routine?  It certainly is a good thing because it helps me manage my "spoon count" as the day goes on and just how I will "spend those spoons".  I feel sorry for people who thrive on the unexpected and hate routine...managing RA would be a nearly unsurmountable challenge for them!  But that is not me now so I get some "spoons" for that!  
     This theory really drives home the need for us to carefully select what we are doing each day and to understand that we simply cannot operate with no regard for the impact on our RA bodies!  That is a loss we all need to grieve to really move on....I have done that and I hope that my family has as well because everyone you are connected to needs to understand the realities of your life with RA or you will not be happy, satisfied or successful at managing your RA.  Don't hesitate to share the Spoon Theory with your family, friends, co-workers, etc so that they can understand in really sharp contrast just how unique our lives are now.  This will lift you up and even gain you some "spoons"!  Enjoy your day.
Nan

4 comments:

deb aka murphthesurf said...

And I want to know where can I buy stock in spoons? This is soooo true! Maybe if I hide them really well I will be able to find them when I hit that ra wall...splat! The fatigue of ra is one of the worst features of this disease to me personally and one I am currently trying to figure out how to overcome. Hope you always have at least a few extra spoons.

Karen Hart said...

Very well expressed,Nan! Have you seen the spoon tattoo sites?!

Nicole.lascurain@healthline.com said...

Hi,

First off, I came across your site and wanted to say thanks for providing a great arthritis resource to the community.

I thought you would appreciate this helpful list of 13 RA life hacks, which helps RA patients make everyday tasks and pain management easier: http://www.healthline.com/health/rheumatoid-arthritis/life-hacks

Naturally, I’d be delighted if you share article on http://livingwithra-nan.blogspot.com/2011/06/spoon-theory-and-ra.html , and/or share it with your followers on social. Either way, keep up the great work !

All the best,

Nicole Lascurain | Assistant Marketing Manager
p: 415-281-3100 | e: nicole.lascurain@healthline.com

Healthline
660 Third Street, San Francisco, CA 94107
www.healthline.com | @Healthline

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