Last night was my grandmother's 96th birthday dinner. The belle of the ball twinkled with delight as she sat surrounded by her children, grandchildren, sisters and cousins. Tales of life growing up back on the farm filled the room with laughter and good memories. Of course a few embarrassing stories popped up, as they usually do, but she was a good sport through it all. I had a nice time. However, the same redundant challenges of taking care of myself while interacting with the healthy world at large reared it's ugly head, as it always does. See I can engage in these activity-filled frenzied occasions at this point in my life. For a while it was merely a pipe dream. The sensory overload and activity alone did me in and devastated my world for days, if not weeks. Then of course there are manners. I was raised to pitch in and help out, like every other female in my family, and when I can't I feel simply awful about it. For a long time I avoided these gatherings because I couldn't pull my equal weight. Now I try and help out a little and not feel bad about hanging out with the guys while the women work. And I certainly have a time limit. I've found it's about two hours.
Right on time I feel it start to happen. The dancing pain spreading across my upper back, fog quickly claiming my brain and that unique feeling of fatigue like magnets are sucking me to earth and I cannot move. It's time to go. I start to gather myself in that direction but get sidetracked by birthday cake and a conversation with a cousin I hadn't seen in a long time. So by the time I really start to go an hour later I am well on my way to falling apart. Then bedlam strikes. The table is dispersed sending everyone up and milling around the room talking loudly. Then another family arrives, but they have a dog who isn't dog friendly so stick her in the backyard. Well Yorkie & Porkie go nuts when they see a strange dog outside, compounding the sensory explosion with fervent barking. And more people come, and it's REALLY loud. And I am trying to say goodbye to everyone swarming around each other like bees in a beehive. And then of course I just lost it.
Now I only have myself to be mad at here. The people who begged me to stay for one more picture, a piece of cake, to finish discussing a topic, they aren't doing anything other than being pushy and not putting my needs first. But it's not their job to put my needs first, it's mine. So as I rant and rave and cry and wail on the way home I realize how furious I am. At me. Why didn't I get up and walk out when I knew I needed to? Why do I think anyone else in the world can possibly grasp that I look just fine, and make quite an effort to act just fine, but am ALWAYS sick. Every single day of my life. Some days are better, some are worse. Some are happy, some are sad. Some are filled with remarkable joy, and others outlandish devastation. It really doesn't matter, I am sick for every single one of them. Even on my good days, when I really feel Fibro releasing me from it's ugly clutches, I still fall painfully shy of what a normal healthy person can do. I can't bang my head against the wall of getting people to understand, though. Because short of hobbling around in dirty rags with a tear stained face and bandages wrapped around my extremities like a mummy, nobody is going to remember I am any different than they are. This is not an easy road to walk. But I have found the times I am cognizant of my limits and respect myself enough to actually get up and leave when I know I need to, well, it works. I am able to straddle both worlds. But only if I am very responsible to the person I am terrible at being responsible toward. Me.
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