Then you realize trying to cool off is a futile attempt. As you look around you’re the only one sweating, besides the male “adults” now chasing children with buckets of water. Perhaps it’s because at least a quarter of your body feels frozen and is wrapped up as if you’re expecting snow at any moment. Or perhaps it’s just the normal sweating you’ll never fully get used to. You push that irritation out of your mind and try to concentrate on the conversation you were just having… only now you have no idea what you were saying, even though the others are still on the same subject. With a glazed over expression you consciously try really, really hard to focus, but it doesn’t help. A beautiful breeze arrives finally cooling your forehead yet causing other areas of your skin to sting and feel raw. Readjusting your blanket or knee sock or arm-length glove to cover the raw spot irritates the rest of your skin that had just settled down. Never letting on how much pain you’re truly in, you eventually find a way back into the laughter. You have to. If you don’t you’ll scream.
In time distractions stop working. In fact, they’re making things worse. You feel the happy voices and laughter tighten the muscles in your shoulders and neck as you withdraw. Sunshine blocked by a hat and sunglasses manages to make your eyes feel tired and dry. The extra pain meds you took to get through the day aren’t helping either. Your leg/arm/back screams to be out of your nice clothes and stretched out in bed. Even though your partner is having a blast they recognize the “look” and help you say your goodbyes.
Home at last you are thankful for the sun, the fresh air, the fabulous company and abundant food. But you’ll think about that more in a few days, when the flare-up you just caused passes. Yes, you knew there would be a price to pay for traveling that half hour in the car, sitting in a lawn chair for a couple of hours, and spending your energy on being social. Fighting off disappointment and depression you adjust back to your reality – this is just how things are, forever… or until they find a cure.
What can you do to help?
Asking questions, being informed and sharing information would be a huge contribution to the RSD/CRPS community. The more educated the general public is about this disease, the more attention it will get. For websites with tons of reader-friendly info try:
RSDSA: http://www.rsds.org
Of course, if you’d like to contribute financially there are several organizations collecting funds for research grants and education. Although I am not currently physically able to participate in either of these walk/run/roll events, I am participating virtually. PLEASE check out:
http://www.triumphoverpain.org
My RSDSA fundraiser page:
One of my fellow RSD’ers on FaceBook is hand making bracelets such as these. (I should have mine soon! Can’t wait!) All monies, less her expenses for materials, are being donated directly to RSD organizations. Let me know if you’d like to purchase one of these 14 dollar beauties and I’ll make the connection for you.
However, the absolute best thing you can do to help as an individual person is to support your friends and family members who have RSD. We can’t always attend social gatherings, but a courtesy invite makes us feel wanted. We may not always answer your phone call or email right away, because we’re probably napping. We may not ask for help with everyday routines or chores, but even the smallest gesture means the world to us. Please try to understand that we are stuck inside these hurting bodies and foggy minds with no definite way out. Although pain makes us want to crawl into a hole and hide, we do not want to lose touch with those who we know and love. It is your thoughts, words and actions that help us through the week, day or even hour. Really!
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