I found myself being asked this a lot this week, and uncharacteristically for me, I was annoyed by the question. Once I thought about it, I realized I really couldn't blame the people asking the question. I'm very good at hiding my discomfort; I've had a number of years of practicing the skill of hiding behind a mask of smiles and humor, and there are very few people who are able to see past that.
Before I get too into this, I want to say that I'm not saying this for pity. I want people to learn. I want those individuals with Fibromyalgia or another invisible illness or in chronic pain to realize they're not alone. I want people who are suffering and haven't been diagnosed to know they're not crazy, it's not in their head, and it's okay to advocate for themselves. I want the "normals" who have a loved one fighting fibromyalgia to gain some insight. Pity is the last thing I'm looking for. That said...
The short answer to the question is "Yes." I'm always in some level of pain. I don't know what it feels like to have a completely pain free day, or even, a pain free hour. It doesn't mean that I'm curled in the fetal position in the corner, crying my eyes out or even that I'm popping pills.
Although--there are days I'm curled in the fetal position. Fortunately, those are not frequent.
More frequent is experiencing muscle aching and tenderness. Someone touching me can hurt me. A hug can, and frequently does, hurt. The other night, a friend was making a point by touching me on the arm, and I'm sure she was being gentle, but it felt like she was poking and digging into the muscle of my arm. It's a horrible feeling, knowing that it can be so comforting to have someone touch me, but also fearing that it's going to hurt.
And if someone hits one of the "tender spots" that can help diagnose the condition..watch out. Want a new skylight? Go hit one of those points on Tiffany to send her through the roof. I've had many a doc go digging for those spots (I suppose it's so that they can determine that I really have Fibromyalgia and that I'm not malingering), and I've had massage therapists try to work those spots loose by deep tissue massage (doesn't work, by the way).
So, to the normals out there who have a friend, family member, etc dealing with this: assume we're still in pain. Ask us how we are. Listen to us. Please, don't make us feel any more freakish than we already feel by treating us like an invalid. As I read recently, I have Fibromyalgia, but I am not Fibromyalgia. Inside this falling apart body that's attacking itself is a bright, funny, ambitious, fun young woman who cares deeply for the people around her. I might be in pain, but it's not going to stop me.
Sunday, February 21, 2010
Wednesday, January 27, 2010
Funky Town
No, not the song. Not right now, anyway.
I'll admit it, I've been in a funk lately. Between the layoffs and stress at work (just the "unknown"ness...yes, I realize that is not a word, but nothing quite describes the feeling of not knowing what's coming next), the recent flare, the weather, well, it's been hard.
One of the lesser fun parts of dealing with a chronic pain condition is the depression and anxiety that can accompany it. Anyone who's dealt with the complications of clinical depression...or even non clinical depression... know that it's not a day at the park.
Frankly, that would make one heck of a theme park. Could you imagine the names of the rides? Downward Spiral Coaster? Ferris Wheel of Isolation? Take a ride through the Tunnel of Apathy? Let's not forget the most boring ride of them all...the Sit Here and Do Nothing. It's all the rage with those dealing with psychomotor retardation and hypersomnia. And for the insomniacs, there's the Long Hallways to Wander Aimlessly through at Night, but that requires a little more energy.
Depression has been a part of my life in a similar way that Fibromyalgia has been a part of my life...pretty much, forever. Like the FMS, I have good days and bad days...good weeks and bad weeks. There's not a quick fix to it, but I know what makes it worse and try to avoid that--for the most part.
The FMS and Depression are linked. If I'm doing well physically, I'm typically doing well emotionally, and vice versa.
I'm working on fighting my way out of it, and so I'm going to go do something I enjoy.
I'll admit it, I've been in a funk lately. Between the layoffs and stress at work (just the "unknown"ness...yes, I realize that is not a word, but nothing quite describes the feeling of not knowing what's coming next), the recent flare, the weather, well, it's been hard.
One of the lesser fun parts of dealing with a chronic pain condition is the depression and anxiety that can accompany it. Anyone who's dealt with the complications of clinical depression...or even non clinical depression... know that it's not a day at the park.
Frankly, that would make one heck of a theme park. Could you imagine the names of the rides? Downward Spiral Coaster? Ferris Wheel of Isolation? Take a ride through the Tunnel of Apathy? Let's not forget the most boring ride of them all...the Sit Here and Do Nothing. It's all the rage with those dealing with psychomotor retardation and hypersomnia. And for the insomniacs, there's the Long Hallways to Wander Aimlessly through at Night, but that requires a little more energy.
Depression has been a part of my life in a similar way that Fibromyalgia has been a part of my life...pretty much, forever. Like the FMS, I have good days and bad days...good weeks and bad weeks. There's not a quick fix to it, but I know what makes it worse and try to avoid that--for the most part.
The FMS and Depression are linked. If I'm doing well physically, I'm typically doing well emotionally, and vice versa.
I'm working on fighting my way out of it, and so I'm going to go do something I enjoy.
Thursday, January 21, 2010
Rain
Rainy days can be nice. Rainy days can be great when you're sitting inside, curled under a blanket, with tea and a book. They can be great when it's a once in awhile sort of thing.
But rainy days can also be problematic. The humidity can cause joints to ache, increase other pain, and have a negative impact on mood. When it's been several days of grey and rainy weather, it really starts to impact the mood negatively.
It's been raining for several days here, now, and it was grey and foggy a few days prior to that. Needless to say at this point, my mood is blah.
I'm a little bit of a sunshine addict. I've never been someone to lay out and sunbathe, and while I tend to forget to put on sunscreen at times, it's not about getting a tan. I feel better on sunny days. I'm happy. I want to be out and about and with my camera shooting pretty things.
Vitamin D has been in the health news lately as being a great supplement for health, and really helping with conditions like Fibromyalgia. We can get Vitamin D from sunlight, which explains why my body craves sunlight. And contrary to the popular belief that California is always sunny, it isn't.
So how do I try to stay healthy? I work on staying warm, using handwarmers to avoid Reynaud's, warm socks and shoes, warm clothes, heating pads, blankets, etc. I try to rest when I need to, drink plenty of water (which I have to force down at times), and find things that make me laugh. I work on not isolating. I work on just trying to take care of myself.
So, I'm hoping to see the sun sometime soon.
Stay well.
Tiffany
But rainy days can also be problematic. The humidity can cause joints to ache, increase other pain, and have a negative impact on mood. When it's been several days of grey and rainy weather, it really starts to impact the mood negatively.
It's been raining for several days here, now, and it was grey and foggy a few days prior to that. Needless to say at this point, my mood is blah.
I'm a little bit of a sunshine addict. I've never been someone to lay out and sunbathe, and while I tend to forget to put on sunscreen at times, it's not about getting a tan. I feel better on sunny days. I'm happy. I want to be out and about and with my camera shooting pretty things.
Vitamin D has been in the health news lately as being a great supplement for health, and really helping with conditions like Fibromyalgia. We can get Vitamin D from sunlight, which explains why my body craves sunlight. And contrary to the popular belief that California is always sunny, it isn't.
So how do I try to stay healthy? I work on staying warm, using handwarmers to avoid Reynaud's, warm socks and shoes, warm clothes, heating pads, blankets, etc. I try to rest when I need to, drink plenty of water (which I have to force down at times), and find things that make me laugh. I work on not isolating. I work on just trying to take care of myself.
So, I'm hoping to see the sun sometime soon.
Stay well.
Tiffany
Sunday, January 17, 2010
Laughter
There's been all sorts of studies about how laughter increases endorphins which alleviates pain and improves mood, so I'm not going to go into all of those studies here. Most people have experienced how a good belly laugh can make them feel better.
I frequently turn to humor in my life. Some people may call it a defense mechanism-and I call those people a little too Freudian for my liking. Given the opportunity to laugh or cry, scream, yell, get angry, or get down, I'll choose laughter. One, I feel better laughing and two, in many situations whether I'm laughing or angry, the situation's still the same.
So, yes, when I find the phone in the freezer, I laugh. When the remote turns up in the sock drawer, I laugh. When we found the ice cream in the cupboard...well, initially that wasn't very funny because it was a huge mess. But it taught us a valuable lesson about the kind of containers the frozen goods come in, and which ones not to buy. And now, we can laugh at it.
There are things about Fibromyalgia that can be funny. It's all a matter of perspective. There are times I feel down about it, but it's not going to change the situation, and it's certainly not going to make me feel better.
So, on a light note, I happened across a funny website yesterday for (of all things) "mail order husbands." Yes, apparently there are websites for all sorts of things. This site had Peter (my husband, and no, he was not mail ordered), my friend Melissa, and I rolling with laughter.
I won't perseverate on the site...you can do your own search if you're so inclined...but the quality of laughter was wonderful. It was the gasping-for-breath, not-able-to-talk, stomach-hurting sort of laughter. My pain level decreased, my mood increased, and overall felt pretty good for someone who's been dealing with a flare.
Laughter is good, and laughing is healthy. It's even okay to laugh at yourself.
Have a good one-
Tiff
I frequently turn to humor in my life. Some people may call it a defense mechanism-and I call those people a little too Freudian for my liking. Given the opportunity to laugh or cry, scream, yell, get angry, or get down, I'll choose laughter. One, I feel better laughing and two, in many situations whether I'm laughing or angry, the situation's still the same.
So, yes, when I find the phone in the freezer, I laugh. When the remote turns up in the sock drawer, I laugh. When we found the ice cream in the cupboard...well, initially that wasn't very funny because it was a huge mess. But it taught us a valuable lesson about the kind of containers the frozen goods come in, and which ones not to buy. And now, we can laugh at it.
There are things about Fibromyalgia that can be funny. It's all a matter of perspective. There are times I feel down about it, but it's not going to change the situation, and it's certainly not going to make me feel better.
So, on a light note, I happened across a funny website yesterday for (of all things) "mail order husbands." Yes, apparently there are websites for all sorts of things. This site had Peter (my husband, and no, he was not mail ordered), my friend Melissa, and I rolling with laughter.
I won't perseverate on the site...you can do your own search if you're so inclined...but the quality of laughter was wonderful. It was the gasping-for-breath, not-able-to-talk, stomach-hurting sort of laughter. My pain level decreased, my mood increased, and overall felt pretty good for someone who's been dealing with a flare.
Laughter is good, and laughing is healthy. It's even okay to laugh at yourself.
Have a good one-
Tiff
Friday, January 15, 2010
Doctors really don't know it all.
I think, in society, it's become commonplace to treat Doctors as if they are God. Some doctors seem to believe that they are. Yes, doctors frequently save lives, they treat illness, they heal people.
But doctors are human. And it's impossible for a human to know it all and be it all. (Trust me, I've tried.) Yes, Doctors attend school for years to learn their craft, but medicine is fluid and changes. Anyone watching television can see the ads for all of the new medicines that are making their way out into the public. New advances in medicine happen regularly. But just as new advances in medicine come about, so do new diagnosis and new conditions.
I remember looking back to just before I was diagnosed. I was 15, and like many 15 year olds had mood swings. I was depressed and anxious, but really, who isn't at that age? But I was also always in constant pain.
So, my primary care suggested a counselor, for the depression, because all of the tests came back "normal". And the counselor referred me back to another doctor for the pain. That doctor referred me to another counselor for the depression because the tests were all "normal". And so on and so forth. I was fortunate enough to finally be sent to a rheumatologist who had heard about Fibromyalgia. I still remember being told that they were only really seeing it in women in their 40's and 50's at that point, and many doctors didn't acknowledge it as an illness because there wasn't a test for it.
One would think, given the amount of time that's passed since then, that the medical profession would have accepted Fibromyalgia as much of a problem as any other condition. Ah, yes. One would think.
Over the last 17 or so years, I've received a range of responses from medical professionals:
From a rheumatologist: "You're just emotional and need a psychiatrist." Um, doc? I'm crying like this because I haven't slept in months and I hurt, and would you mind addressing me rather than playing with your computer?
From another rheumatologist (about 2 years ago): "You just need sleep and exercise." Hey, if I could sleep and/or exercise, I wouldn't be coming to see you.
From an HMO: "We don't treat Fibromyalgia or any of the 'complications' that accompany it because it's not a real diagnosis." Right. OK. So, the pain, fatigue, digestive stuff, cognitive stuff, and hypoglycemia won't be treated because the underlying condition isn't "real." Sounds like a great way to save some money, folks.
From a ER Doc at a recent ER visit: "You don't feel pain normally because of the Fibromyalgia. So, the kidney pain just feels this bad because you don't feel pain as a normal person would." Had I not been completely hopped up on opiates and screaming in pain at the time, I would have been completely offended by the statement that I wasn't normal (which I am offended by). Guess what, Doc? You'd probably be screaming in pain too if you felt like you had someone pulling out your kidney through your ureter using an ice pick.
The medical profession seems so disjointed about the condition, it's really no wonder that the general public doesn't understand.
I learned a long time ago from watching my mom work with her doctors that while they had the book knowledge, I was the expert about my body. I know what medications I've been on...and I know the side effects. I know which meds I can't use, and which work well for me. I know what I experience on a daily basis. There is not a cure all solution.
I'm fortunate to work with a doctor now who works with me rather than trying to tell me what to do. But I've also had to fire a lot of docs. I am not my diagnosis, but I am a person who lives with a condition that presents a huge number of challenges. I accepted a long time ago that I was never going to be a "normal", but that doesn't mean that I have to live my life abnormally. I don't have to lie down and hide, and maybe the fact that I'm not meek or that I'll go overexert myself and screw up a knee frustrates my medical team. Oh, well. I never said I was going to be easy to work with. I also never said that I was going to let the Fibromyalgia rule my life.
Like I said, I have a condition that presents a huge number of challenges, but fortunately for me, I've always liked a good challenge.
But doctors are human. And it's impossible for a human to know it all and be it all. (Trust me, I've tried.) Yes, Doctors attend school for years to learn their craft, but medicine is fluid and changes. Anyone watching television can see the ads for all of the new medicines that are making their way out into the public. New advances in medicine happen regularly. But just as new advances in medicine come about, so do new diagnosis and new conditions.
I remember looking back to just before I was diagnosed. I was 15, and like many 15 year olds had mood swings. I was depressed and anxious, but really, who isn't at that age? But I was also always in constant pain.
So, my primary care suggested a counselor, for the depression, because all of the tests came back "normal". And the counselor referred me back to another doctor for the pain. That doctor referred me to another counselor for the depression because the tests were all "normal". And so on and so forth. I was fortunate enough to finally be sent to a rheumatologist who had heard about Fibromyalgia. I still remember being told that they were only really seeing it in women in their 40's and 50's at that point, and many doctors didn't acknowledge it as an illness because there wasn't a test for it.
One would think, given the amount of time that's passed since then, that the medical profession would have accepted Fibromyalgia as much of a problem as any other condition. Ah, yes. One would think.
Over the last 17 or so years, I've received a range of responses from medical professionals:
From a rheumatologist: "You're just emotional and need a psychiatrist." Um, doc? I'm crying like this because I haven't slept in months and I hurt, and would you mind addressing me rather than playing with your computer?
From another rheumatologist (about 2 years ago): "You just need sleep and exercise." Hey, if I could sleep and/or exercise, I wouldn't be coming to see you.
From an HMO: "We don't treat Fibromyalgia or any of the 'complications' that accompany it because it's not a real diagnosis." Right. OK. So, the pain, fatigue, digestive stuff, cognitive stuff, and hypoglycemia won't be treated because the underlying condition isn't "real." Sounds like a great way to save some money, folks.
From a ER Doc at a recent ER visit: "You don't feel pain normally because of the Fibromyalgia. So, the kidney pain just feels this bad because you don't feel pain as a normal person would." Had I not been completely hopped up on opiates and screaming in pain at the time, I would have been completely offended by the statement that I wasn't normal (which I am offended by). Guess what, Doc? You'd probably be screaming in pain too if you felt like you had someone pulling out your kidney through your ureter using an ice pick.
The medical profession seems so disjointed about the condition, it's really no wonder that the general public doesn't understand.
I learned a long time ago from watching my mom work with her doctors that while they had the book knowledge, I was the expert about my body. I know what medications I've been on...and I know the side effects. I know which meds I can't use, and which work well for me. I know what I experience on a daily basis. There is not a cure all solution.
I'm fortunate to work with a doctor now who works with me rather than trying to tell me what to do. But I've also had to fire a lot of docs. I am not my diagnosis, but I am a person who lives with a condition that presents a huge number of challenges. I accepted a long time ago that I was never going to be a "normal", but that doesn't mean that I have to live my life abnormally. I don't have to lie down and hide, and maybe the fact that I'm not meek or that I'll go overexert myself and screw up a knee frustrates my medical team. Oh, well. I never said I was going to be easy to work with. I also never said that I was going to let the Fibromyalgia rule my life.
Like I said, I have a condition that presents a huge number of challenges, but fortunately for me, I've always liked a good challenge.
Thursday, January 14, 2010
I thought chronic pain was bad...
So, after spending Tuesday and Wednesday in a huge amount of pain that kept me from being able to walk, I awoke this morning to extreme muscle weakness. There's nothing quite like starting out the day having to be picked up off the bathroom floor.
It's frustrating to have something as simple as not being able to keep upright from work yet again. And while I know that my boss understands...and encourages me to take care of myself...life with an invisible illness has made me well aware of how I'm viewed when I take a sick day. It's the "...but you don't look sick" issue.
Since this is my first post on here, allow me to explain what I experience based on what people see vs what I experience internally.
Externally, people see me as an overweight 31 year old who shows no pain, speaks articulately, is organized, capable, intelligent, and with a quick sense of humor.
Internally, I always experience some level of pain body wide from aches to shooting pains down my legs and/or arms. I deal with a whole host of digestive issues. I'm usually fatigued beyond belief. Cognitively, if I don't stay organized, I tend to misplace things (like the phone in the freezer or the remote in my sock drawer.) I lose words regularly; I frequently feel like an intelligent woman trapped in a bumbling idiot's body. I'm chronically hypoglycemic (low blood sugar), which is complicated by no appetite, and I frequently fight the fight of not eating enough calories. (Contrary to popular belief, not all overweight individuals are overweight because they eat too much.) I deal with depression and anxiety regularly.
But within this, I've accomplished a lot. I enjoy yoga and nature and hiking. I love my new Wii. I try to eat healthy. I've learned to ask for help with the housekeeping and have an awesome person who helps with that. I'm a photographer, and love being out with my camera. I have a wonderful husband, a supportive and wonderful group of friends, and a family that anyone would be lucky to have.
In the 17 years that I've dealt with this, I've been very vocal about having it. I want to educate and support. So many people are suffering and don't know why, and I think every person who's had this diagnosis (or Lupus, Chronic Fatigue, MS, or any other invisible/autoimmune condition) have had the experience of being treated inappropriately by doctors, being looked down upon by medical professionals and co-workers, and feeling unheard.
So, I will be venting, laughing, crying, educating, and hopefully offering support.
Take care everyone,
Tiff
It's frustrating to have something as simple as not being able to keep upright from work yet again. And while I know that my boss understands...and encourages me to take care of myself...life with an invisible illness has made me well aware of how I'm viewed when I take a sick day. It's the "...but you don't look sick" issue.
Since this is my first post on here, allow me to explain what I experience based on what people see vs what I experience internally.
Externally, people see me as an overweight 31 year old who shows no pain, speaks articulately, is organized, capable, intelligent, and with a quick sense of humor.
Internally, I always experience some level of pain body wide from aches to shooting pains down my legs and/or arms. I deal with a whole host of digestive issues. I'm usually fatigued beyond belief. Cognitively, if I don't stay organized, I tend to misplace things (like the phone in the freezer or the remote in my sock drawer.) I lose words regularly; I frequently feel like an intelligent woman trapped in a bumbling idiot's body. I'm chronically hypoglycemic (low blood sugar), which is complicated by no appetite, and I frequently fight the fight of not eating enough calories. (Contrary to popular belief, not all overweight individuals are overweight because they eat too much.) I deal with depression and anxiety regularly.
But within this, I've accomplished a lot. I enjoy yoga and nature and hiking. I love my new Wii. I try to eat healthy. I've learned to ask for help with the housekeeping and have an awesome person who helps with that. I'm a photographer, and love being out with my camera. I have a wonderful husband, a supportive and wonderful group of friends, and a family that anyone would be lucky to have.
In the 17 years that I've dealt with this, I've been very vocal about having it. I want to educate and support. So many people are suffering and don't know why, and I think every person who's had this diagnosis (or Lupus, Chronic Fatigue, MS, or any other invisible/autoimmune condition) have had the experience of being treated inappropriately by doctors, being looked down upon by medical professionals and co-workers, and feeling unheard.
So, I will be venting, laughing, crying, educating, and hopefully offering support.
Take care everyone,
Tiff
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