Saturday, January 30, 2010

Dysautonomia SUCKS!

If your're looking for something inspirational in this blog, you might want to look at some of my previous blogs. Not in the mood to blow sunshine up (hmmm you get the picture).Well I'm having one of those days. Actually it's been a rough couple of days and I thought I'd like to have a written record of my bad attitude, it will probably come back to bite me in the rear later, but it will be worth the price.

I've been brought up with the mindset that if I didn't have anything nice to say, then don't say anything at all. Well, I've done that for two years, and now I just want to scream, "I'm tired of waking up every morning feeling like crap!". "I want my old life back!"

Nausea, brain fog, chronic fatigue, tachycardia, shortness of breath, insomnia, medications that could easily place you in a scene from "one flew over the cuckoo's nest", and temperature intolerance are all symptoms that can easily be hid behind a great pair of jeans a t-shirt and some make-up. So can frustration, and anger. Just put on a smile and tell the world you're the same as always. Having to tell myself daily that I have nothing to really complain about because "at least I don't have cancer" isn't easy, and the guilt I feel because I'm upset about my illness when there are people out there who are dieing and have a better outlook on their illness than I do. Having a positive attitude can help, but sometimes you just have to say "Life sucks right now!" and deal with the guilt later.

I would just like to wake up one morning not feeling like I'm going to puke and pass out. I want to go to the mountains, go hiking, and play in the snow. I want to go to the mall and shop and not drop. I want to sing my favorite songs all the way through, and sing another, and another, and stand while singing. I want to work in my garden, and paint my living room. I don't want to be sick, and I don't want to ask for help. I know there are some great lessons in all this, but today I don't want to learn them!

Well dysautonomia sucks, thanks for letting me share.

Not very inspired,


  1. I'm so sorry. It is tough to see you so miserable and not be able to do anything about it. I am sure you wanna just slap me in the face when I come in and so, "Oh I don't feel well today" simply because I have a headache and the sniffles. I'm sure you would trade me in a heartbeat. As far as the meds are concerned...I am checking in on that one. It just seems like there is something better out there. And finally...When you are feeling like one flew over the cuckoo's nest, just remember you have cuckoo friends. :)
    Love you soooo... much!

  2. Oh, honey, I am so sorry that you're not in the greatest of places... I completely understand... I, too, have to have my times of grieving who I was and what I was before... For me, so much of my identity was tied up with what I did. I'm a singer, I'm a gardener, I'm a hiker....etc. Even singing while sitting down some days will make me feel very presyncoptic and I pay for my voice lessons for the next 2 days, and even on my greatest of days, I am starting to realize that I will probably never go hiking again and will need tons of help to garden.

    I'm just coming out of a period where I was grieving who I was... and I do feel better now. I hope that soon you will, too. I also know that I will have other times where I will grieve again, but again, if I allow myself to process through all of that (and I hope you take the time to process through your grief), then for most of the time, I am able to have a fairly positive attitude.

    I will keep you in my prayers!

  3. Although you may not feel inspired - you truly inspire me. Thank you for sharing your life :)


  5. Before I got POTS, I could ski, play hockey, run with my kids, and climb ladders. I have many days in which I grieve for what I was. But then I remember, that person did not appreciate her health. That person did not engender the true kindness of her students. That person was not truly able to help others who were suffering because she viewed illness as weakness. That person had a lot to learn. I may not be able to dance, but I am more caring and far kinder now. Weirdly, I have to thank illness for that. Thank you for your honest blogs. They keep you real and inspiring.