Hi!
I am so grateful to the person who wrote The Spoon Theory. I read it to my high school students every year, and introduce "my" lupus when we talk about people with disabilitities. I love the tshirts on the "butyoudon'tlooksick" website. My youngest daughter had a mantra of criticism directed to my then as yet not diagnosed symptoms: (said with a snarl) If you'd just get out and get some exercise, everybody gets tired, you don't look sick, etc" and she really did look ashamed when I bought a tshirt that quoted her comments almost exactly. And both my daughters shared some regrets as they "don't understand why they were so mean" and not as supportive as they should have been. And I do understand it is a teenage girl dynamic kind of a thing. Again, my thanks for The Spoon Theory. And mom46, I, too, regret not being able to be in the sun. For years as a teenager, I got 'sun poisoning' until I got a deep tan. Now, even light exposure gives me such an unpleasant itching tingling rash and malaise, I can hardly stand it. Sun block gives me a local allergic reaction, too, so I wear long sleeves and pants, a hat, and stay under a sheet or blanket sitting in the shade whenever I go outside. I miss the sun the most, I think. I had pneumonia in Jan. and again for the past 3 weeks, and now I am battling a flare of exhaustion, joint pain, and such systemic muscle weakness I could cry if I had the energy. Someone posted a comment 'ants in my pants' and I went WOW, what a good way to describe my feeling so anxious like ants crawling under my skin. My legs burn and tingle worse than my arms, and nighttime is the worst, as I literally weaken as the day goes by.
hugs to you all
sue