Chronic Rants

One thing about chronic illness is that I miss out on a lot of events. You name it, I’ve missed it: weddings, dinners out, birthday celebrations, medical appointments, support groups, parties…. Illness doesn’t discriminate. Sure, when there’s an especially important event, I’ll try to rest up in advance, but it’s not like I always have a choice.

This weekend, I’m wondering if I’ll be attending Pride events. For those who don’t know, LGBT Pride is the biggest holiday of the year. It’s like queer Christmas, Chanukah, and birthdays all rolled into one. It’s something I look forward to for months. As I type, my fingernails are painted in rainbow colors. My buttons and mardi gras beads are ready. And I’ve been feeling crappy all week. Because my illness doesn’t care about Pride. It just acts up whenever it wants to.

Last year there was a hurricane coming up the coast and a bunch of us went out to the Dyke March anyway in the drenching rains. We got soaked, but we were glad we went. The next day was warm and sunny and the Parade was a ton of fun. As usual, I was too tired to go to any of the parties at night or on Sunday, but that was ok, because I went to my top two choices: the Dyke March and the Pride Parade.

This year it’s raining again. It’s not as bad as last year, but it’s not exactly a light rain, either. Check out the view from my window. If I was having a good day, I’d just suck it up and go. But do I really want to do that when I’m already feeling so crappy? No, not really.

Tomorrow is supposed to be cool but with a very high dew point. Which means I may not feel up to going to the Pride Parade either. Plus, just to add in another obstacle, the closest subway station is under construction so I’d have to do even more walking. Oh yeah, and there’s a 50% chance of rain. Ugh.

So maybe I’ll just go to the party on Sunday. And that would be nice. But that’s not what I really want to do. I want to go to the March tonight and to the Parade tomorrow and I don’t want to have to wait another 12 months for my next chance. Plenty of people will skip out because of the weather and that’s their choice. But it wouldn’t be mine. I’ve gone out to both the March and the Parade in the rain before, and I want to do it again. I want it to be my choice, not my body’s. And that’s why I’m feeling so pissed off right now.

This entry was posted on Friday, June 13th, 2014 at 5:07 pm and is filed under Decisions, Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.