Last month Mr. Cranky Fibro Girl and I went to the beach with my parents, my brother and his wife, and their 2-year old and 4-year old sons. I always like traveling with my dad because his Inner Hedonist is as highly developed as mine is, so we always stay someplace nice. I also enjoy hanging out with our nephews because they find joy in the smallest things, like figuring out how to flip open the lock on the sliding glass door to our fourth-floor balcony, accidentally falling face first into the tub and sucking down half their bathwater, and other exploits basically designed to give six adults a week-long, anxiety-induced heart attack.
It was a little challenging to be around little ones for that long, but I met it by cornering the market on all the jobs that could be performed while sitting down. Block the unsteady 2-year old from leaving the relative safety of the living room carpet for the hazards of the tiled entrance hall? On it. Participate in full-contact racing with every Matchbox Car known to man? All over it. Holding the straw while someone sucks down a Capri-Sun? I AM THE FREAKING VALEDICTORIAN OF HOLDING THE STRAW.
In addition to the fun of little kids and the enjoyment of catching up with each others’ lives, it was also very mentally relaxing. I could sit on the couch, look around, and see absolutely nothing that had to get done. That might have been the best vacation perk of all.
The trip was lovely.
It was really hard. Because I was sick. As sick as I was 3 1/2 years ago when I got back from a trip to the West Coast and had to be wheelchaired off the plane. So sick, that most days I couldn’t manage the stairs in our condo. Sick enough that I had to miss like, 90% of all the fun things that everyone else did.
And it broke my heart.
Not being able to keep up or do much when it comes to everyday life is one thing; I’ve made a sort-of peace with that and figured out how to navigate my days pretty well. But to be unable to do something as easy as taking the elevator downstairs to sit by the pool was almost more than I could bear.
Part of it was being the lone sick person in a group of healthy people. I could not ask for a more compassionate and supportive family. But the fact was that they could go shopping, go to the beach, or even just go down to the hotel lobby every afternoon at 3 to get some fresh-baked chocolate-chip cookies, and I couldn’t. And it was brutally painful to have that truth rammed home over and over again, every day, for an entire week. Illness can be a lonely, isolating thing.
It was also painful to realize that I was operating under certain assumptions about my life and my illness that turned out not to be true.
It’s been six years since I was diagnosed with fibro, and seven years since I got sick with the Hostile Alien Intestinal Bacteria, and I’ve had to come to terms with a lot of loss. A lot. But the past couple of years have been about adding things back into my life, so I guess I assumed that the losses were over and fibromyalgia wouldn’t-or couldn’t-take anything else away from me.
But sadly I was wrong, and that REALLY pisses me off.
Because that is NOT the way vacation is supposed to BE, and that’s the way vacation was, and vacation should be EASY, and vacation was hard, and that’s NOT FAIR, and you’re right, it wasn’t fair, and I should be OVER this by now, and I’m not over this yet, and maybe I can just give myself a break because this is hard, and sometimes being angry feels better than being sad.
So that’s what I’ve been chewing on lately, my latest attempt to bend life and illness to my will (because that’s worked out so well for me in the past). But in the glorious both/and that is my life, my favorite TV shows have had their fall premieres, I have a big celebration planned for my birthday next week, I’ve started getting into genealogy lately and have discovered cool things about relatives I never knew, I’ve got lots of fun books to read, and it seems that words are flowing for me again.
It seems that Fucking Fussy August Syndrome is finally over, and I am feeling the fun new energy of fall.