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Feeling Frustrated

Posted May 21 2014 2:41pm
I am feeling down today. Just feeling worn out, tired, and sick of the same old stuff. Maybe it's the weather (rainy and dark) or maybe I'm mildly crashed from going to the grocery store yesterday, but I am just feeling fed up with this cautious, exhausting life.

I spent an hour on Skype this morning with our biochemist/dietician consultant, but rather than leaving me feeling empowered by new information, I just felt overwhelmed and frustrated.

I have spent the past 11 years of my life researching, reading, seeing doctors, getting blood tests, and trying one treatment after another. Many of them have helped a little bit (and believe me, I am grateful for that), but nothing ever helps a lot. Bottom line is that there is no cure for this wretched illness (YET!).

I do know I am fortunate for all of the treatments that have helped a little - beta blockers, inosine/Imunovir, low-dose naltrexone, correcting sleep dysfunction, and more. I am grateful that I am not bedridden or even spending most of my days lying down, like I was a few years ago. I am grateful that I no longer experience month-long crashes every time I'm exposed to a virus. I am hugely grateful that I can go to the grocery store or take a short walk on a good day.

But. But, every day is still a never-ending struggle. Every moment of every day requires careful thought, caution, measurement, and hard work. I miss being able to live freely, being able to be....um...being able to think of the word I want!!! Before CFS, if I had a down day like this, do you know what I would do? I'd exercise. Just get outside and take a long hike with a friend or my husband or go to a class at the Y and sweat my worries away. I miss that freedom.

Oh, shoot. I thought that writing down my feelings might help me feel better, but now I am crying. I guess sometimes you just have to go with the feelings and let them out. I need to go pick up my son from school now.

Thanks for listening. I'm sure tomorrow will be a better day.
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