Thursday, November 25, 2010

Thankful for?

It's hard to stay positive when you have such a debilitating disease. We as "spoonies" (see post on the spoon theory for the reference)actually have to learn to think about everything in a different way than a "normal" person in order to stay sane.

And sane is a very relative thing. To me sanity is thinking clearly enough to be able to focus on something, anything, other than my disease. I am slowly learning to divert my attention to other things when it gets to be too much to handle. When I want to cry, I hug my dog, or I strike up a conversation with anyone who will talk about anything that doesn't involve my disease. It's a challenge, but I'm learning.

I have to focus my energy on the positives in life, and when you have a chronic illness, it's one of the hardest things to do. But it is possible. So, I can't lift a gallon of apple cider, but I do have a great husband that is willing to fill up my glass. I can enjoy the smell and taste of it, even though it hurts to twist my wrist to take a drink.

The biggest thing for me is that I am truly thankful to have a family, both immediate and extended, that are trying their hardest to understand what it's like to have Stills Disease. I know my Dad often researches new treatments for autoimmune diseases, and reads every word of every article I email him. My mom (god bless her) actually will sit with me and let me complain for hours on end about my aches and pains, and drives me to every appointment I have. My husband, although he has never broken a bone or never been sick, tries so hard to process and understand what it's like to be in bed or on the couch all day long, as well as rubbing my back when I have a good cry. My little corgi Bomber, knows when and where I hurt and licks my wrists and ankles when they flare. My extended family reads this blog and does a little research on their own to learn about the disease. And they pray.

I don't think they can even imagine how much that means to me. I don't want sympathy, I don't want tears. I want support and love, and that is exactly what they are giving me. (including when i disappear from the table for a nap, and no questions are asked, except maybe "would you like a blanket"). They know not to say "but you look good" or "you feeling any better?" which hurts more than it helps. (if it does come out I just reply "don't go there" and I think they are getting it).

Anyway, as we celebrate this Thanksgiving, I don't want to dwell on the negative. The aches, pains and fevers aren't going away anytime soon, so forget them. I have an incredible family that "gets it" as much as one can without actually suffering from a chronic illness. And if they don't understand, they are trying their hardest. I can't ask for more. I am lucky.

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