I was officially diagnosed with fibrofuckingmyalgia two years ago. Which means, I've been living with constant pain for at least seven years. Here is a link to the first blog I wrote about fibro. In that link, you'll find two other links. It'll be like a flashback inside a flashback! How exciting for you!
So, two years. I didn't even think about it on the actual anniversary (last week, actually), but ironically, a friend was asking me how I felt and they actually wanted to know how I really felt. So, I described my pain. I described how, on what I'd call a "good day", my 1 to 10 pain level is around a two or a three. Annoying, but I can function.
And then they asked "and at the worst?"
I replied: "Tears. I cry."
If I can sit up at my desk and be distracted by the Internet, then I'm okay. But if the pain is so bad or the exhaustion saps me so much that I feel the need to lay in bed, then there are tears. I try not to complain too much on my Facebook statuses because I don't want to become "that person". I don't want that kind of attention. I want people to think of me in a good way and not say, "Great, here she goes again..." unless it happens to be about photography or the ren faire. (then if you don't like it, there's a neat thing called "un-friending", get on that). I use the 'net to escape drama, not create it.
So, today was a semi-good day. I'm exhausted- but I spent the weekend at Bristol (pre-season!) and the heat got to me on Sunday. Today my skin isn't on fire, it just aches. My shoulders are sore and I feel better sitting down than standing up. So that's what I've been doing a lot- sitting down.
I've learned that humidity, not the heat, is what kicks my ass. In one of my first blogs about it, I described Fibrofuckingmyalgia as a stealthy Chuck Norris. It turns out that the Army of Ninja Norrises (Norrisi? Norrisey?) takes refuge in the humidity and the ever-changing weather. Our weather this year has roundhouse kicked me in the back of the face a lot. A LOT!
But, here are some good things that have happened in the last two years. "The Treatment" I am referring to is 10 milligrams of Cyclobenzaprine (Flexeril). I take two at night.
Because of the treatment, I now regularly get six to eight hours of sleep a night. Sometimes I even sleep straight through for five hours before I wake up to look at my clock. And when that happens, I smile. Because I've slept for a five hour block and still have another two to three before I have to get up.
Because of the treatment, I was able to go to Bristol three times in 2010 and, in 2011, I had a season pass. We went every single weekend. And that's happening again this year. And it will continue to happen every year.
Because of the treatment, I have more energy for more days now. I take photos for longer stretches of time.
Because of treatment, I take less Vicodin now. I rarely take it during the day and I take a less at night.
Because of the treatment, I have regained the feeling in my fingertips. I have carpal tunnel in both hands, worse in my right than my left. And for years, the fingers have been half-numb on both hands. Sometimes it was just literally numb- I could bang them on my desk and not feel a thing. Sometimes it was that tingly-trying-to-wake-up painful feeling. You know how I found out I'd regained the feeling in my fingers? I touched a hot dish in the microwave. Well, "touched" isn't an accurate word. I picked up a hot dish in the microwave and promptly dropped it on the floor. It was hot!
Because of treatment, I have more good days than bad. I have more stamina. I have more enthusiasm.
I still have bad days. I still have days where it hurts to put on clothes and days where sitting upright is just a terrible idea. But they don't happen as often or for as long as they used to.
I've lost weight. I've made amazing new friends. (and believe it or not, having amazing friends makes a lot of things easier. And I had amazing friends before, I've just expanded the circle and some of them are "real life" and not just online- which, of course, means "faire friends", so they're doubly awesome because most of them have real names and character names. A few of them even have more than one. I'm looking at you Phillie/Chastity/Tabitha).
Bristol opens this weekend. And Ceej, my daughter who turned 19 just last Friday, is an intern with the stage managers. And that means we have a participant parking pass. Bleh, I thought. Participants park really far away from the front gates. And if we park there, I'll have to trek uphill to get to the gates just to get in (because I have a season pass still- by the way, thanks to the Internet for that).
But you know what? I can walk up that hill. And I will. And not to save the money on parking, but because at the end of the day, when Ceej is done with her work, we'll be leaving through the participant's gate instead of the front gates. And with my new camera, I'll be doing more at the faire. I'll be taking photos of more people and at the end of the season, I'll be handing out more CDs than ever. I really can't wait. (here's a link to a bit of a teaser for this season:
My photography blog post about pre-season at Bristol).
So many good things will happen this year. And if I wasn't having so many good days, I wouldn't be able to enjoy them. So, Captains Frobisher and Hawkyns, Sirs Mauldron, Maxmillian, Edgeron and... I'm sorry, I don't know the fourth knight's name yet (I know his real name and we're FB friends, but he doesn't have a character fan page like the others)... Jane the Phoole, Thomasina, Chastity Trollop, the Barbarians and 300 Battle, Barely Balanced, the guys at Dark Cloud, Queen Elizabeth, the Fantastikals, 2 Merry Men... and so many more... you've been warned. You saw what I did to Flight of the Raptor pre-season...