6.10.2010

I need more spoons*....(an anniversary, of sorts)

It's hard to believe, but this month marks five years since I was diagnosed with Rheumatoid Arthritis.

Five years of daily challenges. Five years of almost constant exhaustion and pain. Five years of never having enough spoons. Five years of pushing myself more and more. Five years of finding out who will always be on my side. Five years of fear and worry. Five years of working with the Arthritis Foundation and meeting some truly amazing people. Five years of bad nights of sleep and worse mornings. Five years of realizing how much strength I have inside of me.

Five years. It seems like a million. It's hard to remember not being sick, not having a chronic condition that forces me to slow down.

Five years of give and take. Of every choice I make during the day having a bearing on what I can do later on. Of making trades - I can go out this night, but the next I need to be in bed at 9. I can play softball two nights a week, but then I need to rest for two days. I can go grocery shopping today, but I can't cook until tomorrow.

Of course, not every day is like this. Some days I have more energy than others. Some days, it's easy to forget that I'm sick. And to look at me, most people wouldn't guess that I'm not a typical, healthy 20-something. That's life with an invisible disease - nothing to show the pain you're in, how tired you are, how the meds you just started are making you sick every morning, how you literally roll out of bed in the morning, because you can't bend your knees to stand....

But the people who know you, who see you often - even if they don't know about your illness, even if you've never said anything - they see the signs - the big, scary bags under your eyes. The IcyHot you keep on your desk. The flats you bring to work in case your heels become too much. The slow, hitching walk of someone who is fighting to get through every step. Your friends familiar with your situation will try to understand, but it's impossible. Until you have been in it, you just can't get it. People can usually understand the physical challenges, but the emotional and mental struggles? How can you really describe the frustration of not being able to do simple tasks? How can you put into words how embarrassing it is to have to ask someone to tie your shoes for you, or open a bottle of soda? Sure, you try to laugh it off, try to act like losing control isn't killing you, but it is. And for me, someone who is independent and stubborn to the core? I will make a million jokes before I admit how helpless I feel. I will struggle with something for hours before I admit defeat. And I will hold my head up until I am safely alone before I break down.

But the good things? I've seen the good in a lot of people. I have met amazing people, both online and off, who struggle with RA and Lupus and OA and any number of other autoimmune diseases. I have a great support system, between them, and my amazing family and friends. I have grown up and grown stronger. I've learned to slow down - that everything doesn't always have to be done at warp speed. I've started to take care of myself better.

And I'm ready to take on the next five, and however many come after that. RA, prepare to get your ass kicked.

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*Title comes from The Spoon Theory by Christine Miserandino at But You Don't Look Sick. One of the best things I've seen that tries to explain life with a chronic illness.

1 comment:

John said...

I am so deeply sorry for your condition. I do like your gracious attitude about all of it... and the 'ass-kicking' is pretty awesome too.
I came across your blog because I was searching for other people's take on David Gray's Gathering Dust because that has been my favorite song since 9th grade (over 8-9 years ago). The song continues to effect me in a different way even if I have heard it literally thousands of times in the past decade. But most recently it became important because my mother passed away a week and a half ago from breast cancer - so it feels like the song is solely about that for now. It has helped me so much.
I think it fits into your situation very well because you really "have no use knowing, that with time it with ease". But I commend you on your determination and I thought your posts were very well thought out and meaningful for anyone to feel like life is important enough to fight for. I will be sure to check up again, and hope you are doing better. Be safe.

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