Thursday, February 7, 2013

And I blather on endlessly yet again...

Over on the Facebook, this awesome and wonderful lady posted a link to this article on Squidoo about being chronically ill. The writer talks about being chronically ill and battling with the pain and leading a "normal" life. She even went to the Bristol Renaissance Faire and in that article is a photo of her with one of my faire family, Raymond. He's dressed as a gnome.

But, that article touches on a point- how do people with chronic pain or some other chronic illness do normal things? I'm lucky in the sense that my issue is merely physical pain. I can't speak for anyone who has a mental illness that screws with their life, I can only speak for the pain.

I get asked, mostly during the faire season, how is it that I can go all day at the faire with the walking, standing, heat, those clothes, the heat, the hills, the gravel, the heat, the dust, the sun, did I mention the heat?

The people who ask me usually don't live with, or know anyone who does, chronic pain. The ren faire is my one thing. I survive my day at the faire by taking a lot of Vicodin. I take it on a schedule so I'm never without Vicodin in my body. (except for that one day)

The faire also has a lot of places to sit down. And if you're nowhere near a bench for resting, there are stages and shows all over the place where you can sit in the audience. That's how I caught the Barber-surgeon presentation a few years back. I just needed to sit down and rest and the show was about to start.

So, we have extra pain meds and sitting. Lots of sitting. My pain, also, gets to a point that remaining standing is the only thing I can do, because staying upright is just easier than sitting down and trying to get back up again.

The most important thing that helps me cope with the pain at the faire is my friends. The people I know there are the most amazing and supportive people. There are the ones who continually check up on me (and there are others like me, they also check up on them). There are the ones who are amazing and funny and help me forget how much the pain sucks. And they never cease to surprise me with their understanding. More than once- and I admit, the reason it surprises me is that they were men (an explanation after this paragraph)- someone said, in reply to something I had said: "Yeah, but you have [fibro/that pain thing/chronic pain]..." and they weren't being sarcastic or judgmental. They were genuinely aware of this stupid disease and the amount of discomfort it causes people. The awesome lady who posted that link that set off this blog post said to me that I was the most cheerful person she knew with this stupid disease (that's my word- stupid- not hers). And that's part of the thing... I can't let the pain win. I can't let the pain make me miss a day with all those people. If I wake up on a faire day, my motivation to get out of bed and put on those (surprisingly comfortable) clothes is that I get to see those people. And while most of them are playing characters, they still mean it when they ask me how I feel. Plus, they're hysterical and they say laughter is the best medicine. And if laughter is the best medicine, then the ren faire is the best pharmacy.

Now about that "surprised by the men"... I've been married for over twenty-six years. Eight years into the marriage, he became disabled from a stroke. You've all heard the story. He was twenty-eight and had a massive stroke that left him paralyzed on his right side and with speech and communication disorders. Part of those "communication disorders" is that he has trouble expressing emotions properly. He reacts poorly to serious situations. The best example I can give is when I slipped on the ice on our back deck and tore up my knee (in March of 2006). After I iced my knee for 45 minutes, I used crutches and went to the scheduled parent/teacher conferences. I dropped the kids back at the house about an hour later and told them to tell him that I was going to the ER for my knee. When I got home hours later, he had cleaned the entire bathroom. Why? Because he thought it would be easier for me on crutches. THAT was his concern for me. But of course, he didn't say that and he did absolutely nothing else to help me. He couldn't express himself, so he did what he thought was right.

He also doesn't believe that I'm in as much pain as I am. He thinks I exaggerate it. I've mentioned this before and I've even mentioned how I thought he was "getting it". He's not. He doesn't get it. He doesn't understand how I can go one day almost fine to not being able to move the next day. He has no grasp on it and has no desire to learn anything about fibrofuckingmyalgia. He doesn't care about the peripheral disorders that are associated with it (Reynaud's, which is merely annoying and not terribly painful; neuropathy in my foot, which alternates between tingly numbness and outright agony). When I try to have a conversation with him, to get him to understand what I go through, he tunes me out. Or worse, tells me: "I know you're in pain, you TELL me ALL THE TIME."

So, when those male friends actually spoke with understanding, it surprised me. Because I forget that the rest of the world isn't like the person in the other room watching "Person of Interest" right now. For the record, it surprises me when women speak that way, too, but not to the degree that the men do.

Let's end this on a good note. Because this was not at all fun or funny. Here are two things that happened to me this week... two awesome things.

The Superstrobe Sunday Lighting Workshop  where, on Superbowl Sunday, I drove to Chicago and got to spend hours with some of those wonderful people (and a few new ones) that I mentioned up there.

And, the Maxx Empire Naked Mask Project. My right hand and fingers were in agony when I got done with the little details, but it was worth it.

And as of right now, we're 96 days till the Janesville Faire and 148 days till Open Wide The Gates!

Bring it on. I'm totally ready for it! Wait... We're only three months from the Janesville Faire? Dammit, I still have so much sewing to do! I better get to work on that!

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