My husband and I just spent the last few days in Rochester, MN, as I was visiting–yet again–the Mayo Clinic (which I can’t recommend highly enough, but that’s for another post). I have, among other things, Hashimoto’s Thyroiditis, fibromyalgia, and asthma, and I was working on making these conditions better (though I’ve been a patient of so many departments that I can’t recall them all). Some treatments are going better than others, let’s say.

On Thursday night, Rochester was having (amidst its downtown road construction) its summer “Thursdays on First” street fair, with the requisite tents of fun and funky crafts, food stands, and live music. It was incredibly hot, but hundreds of men, women, children, babies, hippies, hipsters, teens, the aged, the healthy, the unhealthy were moving about happily, with a great vibe in the air.  We weren’t headed to the street fair–we had a goal of catching the Twins game at Newt’s, but that turned out to be full so we walked several blocks back to our car and found another place.

Now, I love street fairs.  Seriously love them. They’ve long been my favorite places to be.  I love the sense of community, the varied people, the wares for sale, the food-and-music, all of it. I would travel miles and miles to go to a street fair, no matter the type. I love the open air, the colors. I even used to love the heat and sunshine.

I realized as we headed back to the car that for most of my history, you couldn’t have dragged me away from the street fair, Twins or no Twins. I would have been looking at the purses made from coffee bean sacks, the handmade jewelry, eating fish-on-a-stick, dancing to the music, laughing and sweating happily. That person, however, is gone.

I was fatigued (fibro and Hashi’s both). I was in a lot of pain. The humidity made it very difficult to breathe (asthma). The bright sun hurt my eyes, my photosensitivity having increased annually. And, the more my autoimmune diseases take root, the more I realize that just as with people with Multiple Sclerosis, heat triggers flares.

And, well, I was broke, which didn’t help…

By the time we got to the car, I not only wanted to collapse in an air-conditioned heap with a Vicodin IV, I was in tears.  I mourned for the person I used to be. I grieved for the woman who loved spontaneity, she who would don a tie-dyed dress and bangles and dance no matter who was watching. Who didn’t hide from the sun, who didn’t take like 18 prescriptions daily, who didn’t have to pace her life so that she could make it to Friday without calling in sick.

And I hated who I’d become, feeling useless, old, broken.

Well, I recognize that spiral. Self-pity, like rich brownies, is fine in moderation but one cannot make a meal of it without negative consequences, so I allowed myself that little cry. We found a cool, dark place to watch the Twins. I had a good time with my husband, with a good meal and lots of laughs.   And I still mourn for that tie-dyed banshee, but I’m not completely willing to give up on being her again. I don’t know how…but I am determined to not lose her entirely.

Maybe I’ll have to choose a “good day.” Maybe I’ll have to dance a little less, move a little more slowly. Maybe I’ll have to pre-medicate before going to the fair. Maybe I’ll have to pick a cloudy and cool day. I will likely have to concede the spontaneity, but I do not have to give up completely.

So, I’ll have my little cries, and I’ll vent on facebook and twitter (my spoonie friends understand). My husband will know how much this really bothers me, and he’ll be my hero, always, for making my life possible without making me feel weak.

And I’ll go dance in the freakin’ tie-dye, dammit.  Eventually.