Lupus Sucks

Well, it does.  I mean… there are a million worse things and most of the time that keeps me grateful for my own problems/issues, but some days… it just sucks.

I was looking something up on the Internet for one of my Awareness Peeps the other night and I ran into “The Spoon Theory“.  I have to tell you that after I read it, I must have cried for about a half hour.

I’m not a crier… I’m grateful… happy… not very self-indulgent (okay… there are times… there are times… but not many… or often).  I cried because it was so clear.  It was such a great way to explain to people what it’s like to have Lupus.  It took me less than 15 seconds to forward the link to my kids.

I heard back quickly from my oldest son (he claims to be 41 – I don’t see how that’s possible) who said it was a “light bulb” moment for him.  “NOW I get it”, he said – and it’s been 10 years since I was diagnosed.  People “get it” but not really.

I’m sure that this theory is also applicable for many of my “awareness posse”.  Maybe this will strike a chord in you.  Maybe this will be the way that you can help the people who love you to understand what your life is like.

Because of copyright issues, I can’t print the article here, but I am allowed to link to it for you.

Here it is:  The Spoon Theory by Christine Miserandino

“Spoons” has already become a way of communicating for us.  I need to “save some spoons” for Bryce’s football game on Saturday.  His team (Bryce is 8) made the playoffs and it’s important for me to go.  Because it’s not close and because I have to take my mobility scooter (load… unload… load.. unload)… it will cost me some spoons, so I need to plan.  So easy to understand now.

My oldest son told me to prepare for good-natured sarcasm…like…  (said with a huge sigh and a pro-quality eye-roll).. “I’ll do it, Mom.  Save your spoons.”  Sarcasm?  I see it as an affirmation – and a way to communicate about a heavy subject in a light way.

I’m amazed that something so simple could make such an impact!

(Thank you, God, for Christine.. and thank you, Christine, for writing this)

jane

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