Today was another crash day. I don't have enough negative words in my vocabulary to describe how angry and annoyed I feel. I don't know if it is winter that's getting to me or just this long fibro road full of miserable twists and turns that is getting me down. I feel like fibro is an old, hand-me-down coat I'm stuck with, that doesn't fit and makes me feel miserable and uncomfortable. I want to let this "coat" slide off my shoulders and fall to the ground, then step away and leave it behind. Instead it feels like the zipper is stuck, the button holes are too small and I can't find a way to wriggle out of it. It makes me feel trapped.
On a day like today, I feel like I am running out of ways to describe how I feel to the caring friends and loved ones in my life. I want to be honest when I am asked, and respond in a way that is evenhanded, genuine, sincere, open, straightforward, and also with self-respect, and sincerity. I want to be positive and upbeat, not bore people with too many details and not come across as whining or complaining. Sometimes, when I downplay how I'm feeling, expectations for what I can do soar and I find myself back pedaling and disappointing others because they thought I was doing better. Even on a good day, my bar is lower than theirs. Today, after another afternoon of canceled plans I told my hubby I felt bad that he was stuck with me. There are many days that I believe he deserves better. He says otherwise and thank God he has a big heart.
It's not that I don't appreciate being asked how I'm doing. But on days like this, especially after a really good day, I feel down, negative and I can lose the filter that keeps me more upbeat and positive. A crash after a great day reminds me of my current limitations and that I am out of the loop. I don't want to be a drag, a pain in the butt, or the one who always messes up the plans. I feel disappointed when I have to back out of things and when I know that I am asking others to accommodate me. I am an independent woman who has been able to do for myself my whole life. Fibro and fatigue has impacted my life and my level of activity and independence. On one level I accept where I am, but there is still a fierce energy inside me that moves me forward. I am not giving up. I am a work in progress.
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