Note to self: people with fibromyalgia and herniated disks should maybe stay out of the pit at punk shows. Where are my pain meds...
Still, it was amazing how many random, stranger guys were looking out for me. They'd pull me out of the way, or pull me in front of them when they noticed I was standing on my tippy toes trying to see. Che is my hero, though. He kept me from getting crushed and helped me escape when I'd had enough. :)
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Sunday, September 20, 2009
Thursday, September 10, 2009
Holy crap, it really is all good!
I realized yesterday that I haven’t said anything about the fibromyalgia thing since I posted that first oh-my-gawd-I-have-fibromyalgia-everything-hurts-please-don’t-ask-me-to-do-anything-I’m-so-fucking-tired post.
That situation has actually gotten a lot better. I still have days when I can’t get out of bed, but they are becoming more and more rare. Between the treatment protocol we’re following and my grudging ability to stop pushing myself so hard, things have definitely improved. It did take me a while to learn to say to myself, “Okay, I just can’t do this right now” and be alright with it.
Although, with the proper motivation, I can completely forget that I ever had any pain or exhaustion issues. Take, for example, the Green Day show. They played for 2 ½ hours (thanks, guys. That was awesome), during which I danced, jumped up and down, screamed and generally behaved like a demented banshee the entire time. It’s a Dionysian ecstatic frenzy kind of thing. At least for me.
I had borrowed Maureen’s shoes, because she has tall shoes, for the show. At not quite 5’1”, let’s face it – I am not going to be able to see over anybody. I didn’t even notice until we got to the parking lot that I had blisters on the bottoms of both of my feet. I said to Maureen and Rich, “Uh, where did you guys park? Because I’m not so sure about walking to the car…”
I slept, sorta, on their pull out couch, sans benefit of massive additional foam padding. (Maureen, I didn’t tell you this, but I wasn’t sure I was going to be able to leave the next day.) The next day, though, I felt way better than I expected to. The main thing was my voice. As in, what voice? Talking was a challenge for almost two weeks. One of my colleagues suggested I get a temporary job at a 900 number to take advantage of the whole raspy, whispery voice thing.
So, yeah, the fibro thing is much, much better. In fact, lots of things in my life are pretty damn good. To the point where I’ve lost the impulse to bludgeon to death people who say, “It’s all good” while screaming, “What about this?? Is this good too??”
Maybe being forced to slow down, once I got past the initial denial and fuck you stage of it, has allowed me to see happy things that I breezed right by before. I like where I live; it’s not ideal, but it’s good. I have a car that doesn’t cost me a fortune to run. I have critters I love around me. I have freaking phenomenal friends. I have a niece and nephew that are the most adorable, coolest, smartest, cutest, most awesome kids ever in the history of humanity. I have bills, but, hey, I can pay them. I still have all my parts and, as far as I know, they all still work. I live in a part of the world where I have a reasonable expectation of safety at all times.
I also have something I’m devoted to that gives my life meaning and purpose. I’m referring to Not Without My Pet, of course. Meaning and purpose can’t be overestimated. So, what I never thought I’d say, it’s all good.
That situation has actually gotten a lot better. I still have days when I can’t get out of bed, but they are becoming more and more rare. Between the treatment protocol we’re following and my grudging ability to stop pushing myself so hard, things have definitely improved. It did take me a while to learn to say to myself, “Okay, I just can’t do this right now” and be alright with it.
Although, with the proper motivation, I can completely forget that I ever had any pain or exhaustion issues. Take, for example, the Green Day show. They played for 2 ½ hours (thanks, guys. That was awesome), during which I danced, jumped up and down, screamed and generally behaved like a demented banshee the entire time. It’s a Dionysian ecstatic frenzy kind of thing. At least for me.
I had borrowed Maureen’s shoes, because she has tall shoes, for the show. At not quite 5’1”, let’s face it – I am not going to be able to see over anybody. I didn’t even notice until we got to the parking lot that I had blisters on the bottoms of both of my feet. I said to Maureen and Rich, “Uh, where did you guys park? Because I’m not so sure about walking to the car…”
I slept, sorta, on their pull out couch, sans benefit of massive additional foam padding. (Maureen, I didn’t tell you this, but I wasn’t sure I was going to be able to leave the next day.) The next day, though, I felt way better than I expected to. The main thing was my voice. As in, what voice? Talking was a challenge for almost two weeks. One of my colleagues suggested I get a temporary job at a 900 number to take advantage of the whole raspy, whispery voice thing.
So, yeah, the fibro thing is much, much better. In fact, lots of things in my life are pretty damn good. To the point where I’ve lost the impulse to bludgeon to death people who say, “It’s all good” while screaming, “What about this?? Is this good too??”
Maybe being forced to slow down, once I got past the initial denial and fuck you stage of it, has allowed me to see happy things that I breezed right by before. I like where I live; it’s not ideal, but it’s good. I have a car that doesn’t cost me a fortune to run. I have critters I love around me. I have freaking phenomenal friends. I have a niece and nephew that are the most adorable, coolest, smartest, cutest, most awesome kids ever in the history of humanity. I have bills, but, hey, I can pay them. I still have all my parts and, as far as I know, they all still work. I live in a part of the world where I have a reasonable expectation of safety at all times.
I also have something I’m devoted to that gives my life meaning and purpose. I’m referring to Not Without My Pet, of course. Meaning and purpose can’t be overestimated. So, what I never thought I’d say, it’s all good.
Monday, November 10, 2008
Good news/not so good news
Well, I have an explanation now for why I'm so exhausted and in pain all the time. Which, in turn, explains why I've been MIA from groups and teams I belong to.
The not so good news: I've been diagnosed with fibromyalgia. Many people are familiar with this as a chronic pain illness, from the television commercials. It is that, for sure, but it's more than that. There is no cure for fibromyalgia, but there are a wide variety of (mostly experimental) treatment options available. For now, my doctor is starting me out with a medium dosage of an anti-depressant which is different from the anti-depressant I already take and does not conflict with that or my migraine medication. I'm going for blood tests as well, to help him
understand what treatment(s) may work best for me.
The good news: Fibromyalgia is not progressive, so it won't eventually cripple me or kill me or anything. Certain conditions and behaviors will make the symptoms better or worse, but the illness itself won't get worse, if that makes sense.
For me, the good news is that all the things I've been beating myself up for are actually not my fault! That alone makes me feel better. It also explains several things I'd previously thought were individual physical issues. It turns out they're all part of the same thing!
This diagnosis explains why I'm exhausted all the time and why I'm in pain all the time. It explains why, when I get home from work, all I can do is sit on the couch for an hour or two and then go to bed. It explains why my weekends usually consist of alternately sitting on the couch and sleeping. It also explains why I get sick all the time, catching any little bug that comes along. It explains my sensitivity to scents, sounds and light. It explains my memory loss issues and it explains why I can't think of the word I want in conversation. (Yeah, I know everybody does that from time to time, but it's a matter of degree – how much and how often.) It may also explain why I get migraines in the first place. It explains a few other things that are too icky to share.
Right now, we're at the point of seeing what the new medication does and waiting for lab results. What I need from my friends and family is understanding. Please understand that when I say I'm tired, I don't mean the kind of tired that many adults in the modern world experience, which sucks enough as it is. I mean I'm exhausted. I mean I'm too tired to answer the freaking phone, if you can believe that.
If I don't accept invitations to do things and I don't come visit, it's not at all that I don't want to see you or that I don't care or whatever. It means that just driving for an hour wipes me out for a couple of days afterward. It means that I've been instructed by my doctor to lie down several times during the day. It means that it takes me so long to recover from any activity that just thinking of going to do something makes me want to climb in bed, pull the covers over my head and cry.
It's been like this for a while now, but now that I have a diagnosis I feel like I can tell people how I've been feeling without worrying that anyone will think I'm making excuses or exaggerating. It really is this bad.
But…I am hopeful now! What's wrong with me is not my fault and there are real treatment options! I'm looking forward to feeling better and getting my life back. I'm also happy to have finally found a doctor who has given me a correct diagnosis and who can help me. Maybe now I can jettison some of these other doctors and stop supporting the entire AMA. Ha!
I hope that everyone will all bear with me as I try out treatments to see what works. Thanks for reading my loooong post.
The not so good news: I've been diagnosed with fibromyalgia. Many people are familiar with this as a chronic pain illness, from the television commercials. It is that, for sure, but it's more than that. There is no cure for fibromyalgia, but there are a wide variety of (mostly experimental) treatment options available. For now, my doctor is starting me out with a medium dosage of an anti-depressant which is different from the anti-depressant I already take and does not conflict with that or my migraine medication. I'm going for blood tests as well, to help him
understand what treatment(s) may work best for me.
The good news: Fibromyalgia is not progressive, so it won't eventually cripple me or kill me or anything. Certain conditions and behaviors will make the symptoms better or worse, but the illness itself won't get worse, if that makes sense.
For me, the good news is that all the things I've been beating myself up for are actually not my fault! That alone makes me feel better. It also explains several things I'd previously thought were individual physical issues. It turns out they're all part of the same thing!
This diagnosis explains why I'm exhausted all the time and why I'm in pain all the time. It explains why, when I get home from work, all I can do is sit on the couch for an hour or two and then go to bed. It explains why my weekends usually consist of alternately sitting on the couch and sleeping. It also explains why I get sick all the time, catching any little bug that comes along. It explains my sensitivity to scents, sounds and light. It explains my memory loss issues and it explains why I can't think of the word I want in conversation. (Yeah, I know everybody does that from time to time, but it's a matter of degree – how much and how often.) It may also explain why I get migraines in the first place. It explains a few other things that are too icky to share.
Right now, we're at the point of seeing what the new medication does and waiting for lab results. What I need from my friends and family is understanding. Please understand that when I say I'm tired, I don't mean the kind of tired that many adults in the modern world experience, which sucks enough as it is. I mean I'm exhausted. I mean I'm too tired to answer the freaking phone, if you can believe that.
If I don't accept invitations to do things and I don't come visit, it's not at all that I don't want to see you or that I don't care or whatever. It means that just driving for an hour wipes me out for a couple of days afterward. It means that I've been instructed by my doctor to lie down several times during the day. It means that it takes me so long to recover from any activity that just thinking of going to do something makes me want to climb in bed, pull the covers over my head and cry.
It's been like this for a while now, but now that I have a diagnosis I feel like I can tell people how I've been feeling without worrying that anyone will think I'm making excuses or exaggerating. It really is this bad.
But…I am hopeful now! What's wrong with me is not my fault and there are real treatment options! I'm looking forward to feeling better and getting my life back. I'm also happy to have finally found a doctor who has given me a correct diagnosis and who can help me. Maybe now I can jettison some of these other doctors and stop supporting the entire AMA. Ha!
I hope that everyone will all bear with me as I try out treatments to see what works. Thanks for reading my loooong post.
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