Tuesday, February 8, 2011

The Spoon Theory - A Must Read

For years I have tried to explain to others what living with my disease is like.  It is a rare chronic invisible disease so that is difficult.  What compounds it even more is, as I have MCTD (mixed connective tissue disease) is that it contains 6 rheumatic diseases in that one name:  Vasculitis, Polymyositis, SLE (Lupus), Sjogrens Syndrom, Raynauds Syndrom and Rheumatoid Arthritis.  The only word people recognize is .... Arthritis.  Instantly immages of their grandparents creep up and suddenly I'm someone who whines because isn't all that Arthritis is is just a few minor aches and pains?  It frusterates me to no end.  Whats worse are the suggestions.  Have you tried this or that new miracle cure all? Um....you did understand its chronic right?  So anyhow, most people, even those close to me who have been in doctors appointments or read texts about my diseases, never truely understood what I was going through, what I DO go through every single solitary day.  And have since I was 9 years old. 
It is hard to explain as a child, young adult or even as an adult now in my 30's why I just cannot do some simple tasks or why I cant go out to a night of karaoke even though I would love nothing more.  It is something very difficult to put into words for those who dont have a disease like this to understand. 
Then I found this amazing article on....The Spoon Theory (you can read the article here and I highly recommend you do before reading further.....The Spoon Theory )

When I read this I almost cried tears of joy.  I know exactly how she felt trying to explain.  Ive been there.  Her explication of this life we live, this battle we fight, makes it so easy for others to understand.  I have been known for "running out of spoons" and writing IOUs for many spoons for copious amounts of time on end until my body just shuts down entirely and I end up in hospital.....again....or on bed rest....for another few weeks....again..... I am single so its even harder for me not to run out of spoons.  I have no one to share the daily workload with.  Some days I have one or two extra spoons, but most the time by the time I curl up to sleep I have none left.  I've learned, like the author of this amazing analogy, to try as often as I can to carry extra spoons when I can and to plan meticulously every day what I have enough energy to do.  Some call that being anal retentive, but without it you run out of spoons before lunchtime.  And it doesnt help that the number of spoons changes by day and little things like weather or a fever can affect how quickly you can go through those spoons doing such simple tasks.  I hope everyone reads and shares this article, especially if you know someone who has a rheumatic disease, or if you have one yourself, it helps you to be able to exlpain your world a little bit easier. 

Wishing you all extra spoons in all your endevors and many gentle hugs!

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