Sunday, April 19, 2009

I missed another event!

Well, the rain has finally stopped, but I'm left with the residuals from a rainy spell: left-over pain, grogginess from the extra medication, and I'm so over-tired from not sleeping for a couple of days. But at least it will be getting better.

The problem is: today is my father-in-laws birthday, and we intended to go over there for the day and celebrate. I got up this morning, and I knew that I just couldn't. I couldn't even get up to wash my face and brush my hair. So I had to let myself and other people down ... again.

I have missed so many events because of RSD, I can't even count them all. I even missed Christmas one year. This disease doesn't have any consideration for my plans. It makes it really hard to make plans at all. I know that I have good days and bad days, but I don't get an advance calendar to tell me which will be which. So all of my plans have to be tentative. Well, how do you make tentative plane reservations? How do you make tentative plans to attend a wedding, or even enjoy Christmas with the family? I miss out on a lot, and it's disappointing.

Worse yet, I feel like I let people down. Yes, my loved ones all know that when they make plans with me, there is always the caveat: "as long as I feel good." But it still feels awful to call my in-laws and say "I'm sorry. I won't be able to celebrate your birthday with you." It feels awful for me, but I also feel horribly guilty that I'm spoiling the day for other people. I know that I'll be disappointed sometimes, but people around me end up getting hurt too. It seems so unfair. RSD can steal from me, but it shouldn't be able to steal from those around me.

I used to just not make big plans. I didn't even go to my best friend's wedding because I was so afraid of having a bad day. She lives in Washington DC, and I was too afraid to even go to her wedding. I thought about the plane and the 5 days in a row having to be "up." It terrified me: "What if I have a bad day?" "Can I even fly, or will that hurt so much that I'll humiliate myself ending up on the floor of the plane?" So I just didn't go! That wasn't a good solution; I ended up just missing everything. And, it was allowing my fear to rule me. I realized that it wasn't the pain holding me back, if was the fear of the pain. That was a big realization for me. I always said, and honestly believed, that it was the pain and the RSD that was keeping me in bed. It was a real paradigm shift to understand that it was the fear of the pain that was taking everything away from me. I finally just refused to be ruled by fear. I know some things will cause me pain, and I make an active choice whether to do them or not. Do I want to take my nephew to a playground? Yes! Do I really need to climb the monkey bars with him? Ok, probably a bad choice. Doesn't mean I don't still do it sometimes, but I know I'm being dumb while I'm doing it, and I've chosen to do it anyway. It feels powerful to make those choices for myself, rather than being ruled by fear.

But back to the original topic, I still don't know how to really believe my friends and family when they say that they understand that I might have to cancel plans at the last minute. In my head, I believe them, and I know they are choosing to see me sometimes with the understanding that I might have to stand them up at the last minute. But I still feel really bad when it happens. I'm not sure there's an answer to this one. I think I just need to get over it. As a friend says, "build a bridge, and get over it!" Sometimes easier said than done.


  1. I'm a few days late on reading your blog. So let me first just say thanks for doing this. My mom had chronic pain with her back for many years prior to having a stroke. She tried many many remedies.... drugs, self hypnosis, electronic nerve interference, alcohol, drugs, acupressure, did I say drugs, and the list goes on. I have great admiration for you, the choices you are making along your life path and how you handle your situation. I am so happy Keith and Kristi introduced us and proud to call myself your friend. Thank you for sharing your life with us. You go girl! Linda

  2. Thank you so much. I tried the deep deep depression for a few years, and that didn't really work too well for me. Now I am trying the positive attitude way. That doesn't mean that I don't have my moments when I cry and yell and curse the powers that be for giving me a rotten body that doesn't work, boy do I. But you can live your life facing backwards, or you can face front and move forward. Even if it's baby steps and they're really hard, move forwards. I try anyway. And if I can help one other person claw their way out of the pits of depression, that will have been a life worth living.

    Thank you for your kind words Linda. I'm thrilled to have met you and hope we get together again soon. I really dig you and James.

  3. As one of the friends who does get canceled on, let me say "YES, I whole-heartedly understand." Sweetie, you have a different set of needs than the rest of us, and sometimes those needs make you stay home. Plus, I've seen you suffer while being out with us, and watched you choose being in pain to stay with us rather than going home and being comfortable alone - if that's not true love, nothing is. Anyone who is truly your friend knows you've never cancelled because you were being passive-aggressive, feeling spiteful or mean, or just plain got a better offer - you only cancel because the pain won't let you go, and that's more than good enough for me. Anytime I get to spend with you is worth a cancellation here and there.

  4. I love you! What a true and wonderful friend you and your wife are to me. No, not friends, family, which is so very much more.