by Living with RSD: what comes next?

When you have a chronic disorder, disappointment is something that you’ve come to live with. Disappointment that you can’t hold your child’s hand, go on long runs or wear your favorite shoes. Again, not to be such a Debbie Downer, you hold onto disappointment as the familiar. It’s almost that when something does go your way, when the pain has faded, you can’t enjoy it because you are waiting for the tides to turn.

Disappointment has become a standard of living for me, almost like eating or brushing my teeth. I don’t particularly enjoy it, but it’s just something that I need to go through. I didn’t realize this until later this afternoon. Once again I found myself disappointed. But, I’ve come to expect it. Disappointment can become a nasty habit or a dirty secret. To top it off, I’m disappointed in myself for being disappointed. A circle of frustration.

So, how to turn the negative into the positive? How can I not turn this into low expectations? I know the problems, not the solutions. This minute, I’m trying some deep breathing. Living moment to moment. By focusing on that, I can’t get disappointed over the bigger picture.

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2 Comments to “Disappointment”

  1. i also have rsd, and completely understand your feelings of disappointment. i wouldn’t wish this on my worst enemy. it is absolutely hell. my life as i knew it has ended. nothing that i have tried has worked to relieve the pain including the neuro stimulator implant. i think i read that you have 2 units implanted. i hope they are working for you. my doctors are pushing me to do the in hospital, intravenous ketamine treatment. i am not sure if they are going to simply sedate me or actually induce a coma. i am very scared of this procedure. have you had any experience with ketamine? i also blog about my experiences with rsd at MeAndRsd.com. i know that reading about other peoples’ experiences helps me. i would love it if you would check out my site and give me your feedback. i’m glad i found you.

    • Hi Jen,

      It’s so nice to hear from someone who understands. I haven’t had any experience with the induced comas. My friend at work has a friend who is going to try it. I will happily read your blog. I got really tired of reading doctor’s reports of what it felt like to have RSD, it’s so much better to hear from someone who knows.

      Take care!

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