A Challenge

Today I went back to the original spoon theory article and read it, and I challenge you to read it too. It is the best description of living with lupus that I have ever seen. It is an analogy, not about the actual aches and pains, but about how one views their daily life. I am going to use the magic word-PLEASE go read this: http://www.butyoudontlooksick.com/the_spoon_theory/. If you have any desire to understand your friends with chronic illness, this is essential knowledge.

Yesterday was fun. I went out to dinner and a movie with friends and I wasn’t a depleted lump of fatigue and pain when I returned home.  A note to all my protective family members: Please don’t call to tell me that I need to slow down. I am better, and it’s ok for me to increase my activity when I’m better. It is frustrating to have a disease for 15 years and know that your siblings haven’t yet learned the scientific basics of what makes it better or worse. Instead, I get handed a corollary of our mother’s fallacious proclamation that “exercise causes polio”. (I swear on a stack of knitting guides! This is the wisdom that I was taught as a child.) My sisters preach to me about continuing to safely sit in one place and not go out and do normal things, afraid that shopping or driving or meeting friends for knitting adventures will push me back into a flare of lupus.In other words, they are saying to me that if I get sick, it’s my fault. I didn’t stay seated on the couch in my living room and hide from the vicious disease that is stalking outside my door.
Do I sound angry? Of course I am! Do I let these false pronouncements change my activities? Ummmm let me think….of course I don’t! But I do get tired of dealing with this ignorance.
On a lighter note, I came frighteningly close to causing a landslide of teenagers at the movies last night. I took my knitting. It helps me to stay seated in confined surroundings without fidgeting or concentrating on stiff, uncomfortable joints. I’m working with a new cashmere, Jade Sapphire 12-ply 100% Chinese cashmere, and it is lusciously soft. I started in the movie and knit about six inches of 1×1 rib while I laughed my butt off (and occasionally teared-up) at the story of pregnant teen Juno and her pre-adoption journey. It was wonderful. My friend and I were accompanied by our teen-age daughters, and we were unanimous in our love of this film. At the end of the movie, we all felt the ribbed piece I had knitted and agreed that it was sinfully soft and cuddly. I tucked it in my purse and headed down the stairs. At the landing, I felt a tug on my leg and realized that it was wrapped in my yarn.  Above me, on the stairs, people were saying “what is that?” and “wait, I’m caught in something”, and in the dim light I could see a meandering trail of yarn leading from my foot back up the stairs. Dayna was hissing at me “I told you not to bring your knitting”, but she ducked under the crowd and retrieved my precious ball of cashmere and we got out without anyone tripping and careening into a head injury. File this under Hazards of Knitting.
I found a good evaluation of the Jade Sapphire cashmere in Knitter’s Review at http://knittersreview.com/article_yarn.asp?article=/review/product/050120_a.asp and it reminds me that for an item that is a luxury, the subjective perception of pleasure and comfort should rule your decision. I am loving this yarn. I’ll show you a finished product soon.

One Response

  1. I love the site you sent me to with the spoon theory! Such a great story to help me understand what your life if like with Lupus. But you don’t look sick, you don’t seem sick with such a great attitude toward life! I can’t imagine what it is like for you. My brief experience was during the year of my chemo and recovery. I remember not wanting to tell anyone because I would have to comfort them and see the looks in their eyes and be treated so differently! I have two sister and one would not come and see me for a month and was afraid to call because I might die…she soon got over that and we became even closer than before. We enjoy each other more now and don’t hold back things that might bother us or would once wait to express! Im so amazed at the JOYFULLNESS of you Essie! I’m thankful for the opportunity to have you share with all of us and the sharing is such a BLESSING! Thanks for the wakeup call to: Dance as though no one is watching, love as though I’ve never been hurt before, sing as though no one can hear me and LIVE as though heaven is on earth. Tootle-loo-bye-bye!

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