Cafepress sells t-shirts, sweatshirts, posters, etc. related to chronic fatigue syndrome and other illnesses. The one I'm going to buy says
Warning!!! Things NOT to say to someone with a disabling chronic illness:
...but you don't look sick
...everybody gets tired
...you're just having a bad day
...it must be nice not having to go to work
...I wish I had time to take a nap
...if you'd get out more
...you're just getting older
...if you'd get more exercise
...it can't be that bad
...it's all in your head
...you're just depressed
...there are people worse off than you
...you'll just have to tough it out
...you just need a more positive attitude
...this, too, shall pass
(I wouldn't wish what I have on anyone but unless you get it, you just don't get it.)
I'd like to get this message out not just for myself, but because I think there are many people who have been hurt by such comments, and if I can educate a few people about what not to say, then maybe some people will get hurt a little less often.
Monday, March 31, 2008
Sunday, March 30, 2008
A week in the life of chronic fatigue
I haven't been diagnosed with chronic fatigue syndrome, but here's what my life is like:
Last Sunday I had some homework that I felt I really needed to work on, but I just couldn't muster up the mental coherency. I spent the day in my pajamas doing light reading. When it was time to go to bed, I was happy that I didn't have to do the hard work of putting on pajamas or taking out my contact lenses, because that day I had not gotten out of my pajamas or put in my contact lenses.
Monday I went to work and left around 3 for a doctor's appointment. I got home around 5:30 and did a bit of work on my homework. However, I found myself overwhelmingly sleepy, and had trouble concentrating on my homework. Around 7:00 I quit doing my homework, had some dinner, and then just waited around until it was late enough to go to bed. I went to bed at 8:35. I slept through the night.
Tuesday morning I got up around 7:00. I sent an e-mail to the people at work saying I'd be out sick, and went back to bed until 10:00. I watched TV about 10-3, then tried to do my homework. It was hard. Trying to think was like walking through two feet of mud. But I forced myself to do it because the homework was due that day.
Wednesday and Thursday were normal days. I worked through the whole day. After work, I was tired, but did a few t hings, including laundry and light reading.
Friday I had stuff going on at work. I was happy, because I like doing interesting stuff. I was busy at work all morning, with more walking around and talking to people than I usually do. When it was over around 1:30, I was past exhausted. I felt like curling up in a ball and whimpering. But I couldn't do that because I was still supposed to be at work. I did some work in the afternoon, but I certainly wasn't at my peak productivity. Then I went to a dinner that was related to the morning's events. When I got out at 7, I went to the radio station and listened to CD's. I had planned to spend the evening that way because I knew I'd be so tired that if I was home, I'd have a hard time knowing what to do with myself. I got home and went to bed around my usual time. It was hard to fall asleep, because I was so tired. It's like there comes a time when you are tired and you are ready to lie down, but then if you keep going for hours after that, you become beyond tired, and your molecules hurt, and you can't even rest. But I did manage to fall asleep.
Saturday I got up. I got dressed and had breakfast. As soon as I did those things, I went grocery shopping. I went to get it out of the way so I could spend the rest of the day resting. I spent the day doing light reading, napping, and playing a computer game. I knew that I have homework to do, and bills to pay, and tax forms to fill out, but I also knew that I needed to recover from my big day the previous day before I could embark on such things. It really wasn't such a big day yesterday, just a few hours of walking around and talking to people, but that's more than I really can handle.
My goal for each week is to work full-time, do laundry, get groceries, and do homework. That is really a bit much for me, but I usually pull it off more or less. I don't cook and clean much. Those things require standing up. I don't go out at night. Well, once in a while I go to a concert, but I pay the price later and it's not something I would do on a regular basis. I don't engage in physically strenuous activities such as hiking or skiing. I am able to do light exercises such as short walks, yoga, Nia, a little gardening, and some short, slow rollerblading. I can't spend more than an hour a day in the aforementioned light exercises, and that's only on a good day. On a bad day, standing up long enough to take a shower is too much work.
So that is my life, and everyone tells me that I'm not really sick.
Last Sunday I had some homework that I felt I really needed to work on, but I just couldn't muster up the mental coherency. I spent the day in my pajamas doing light reading. When it was time to go to bed, I was happy that I didn't have to do the hard work of putting on pajamas or taking out my contact lenses, because that day I had not gotten out of my pajamas or put in my contact lenses.
Monday I went to work and left around 3 for a doctor's appointment. I got home around 5:30 and did a bit of work on my homework. However, I found myself overwhelmingly sleepy, and had trouble concentrating on my homework. Around 7:00 I quit doing my homework, had some dinner, and then just waited around until it was late enough to go to bed. I went to bed at 8:35. I slept through the night.
Tuesday morning I got up around 7:00. I sent an e-mail to the people at work saying I'd be out sick, and went back to bed until 10:00. I watched TV about 10-3, then tried to do my homework. It was hard. Trying to think was like walking through two feet of mud. But I forced myself to do it because the homework was due that day.
Wednesday and Thursday were normal days. I worked through the whole day. After work, I was tired, but did a few t hings, including laundry and light reading.
Friday I had stuff going on at work. I was happy, because I like doing interesting stuff. I was busy at work all morning, with more walking around and talking to people than I usually do. When it was over around 1:30, I was past exhausted. I felt like curling up in a ball and whimpering. But I couldn't do that because I was still supposed to be at work. I did some work in the afternoon, but I certainly wasn't at my peak productivity. Then I went to a dinner that was related to the morning's events. When I got out at 7, I went to the radio station and listened to CD's. I had planned to spend the evening that way because I knew I'd be so tired that if I was home, I'd have a hard time knowing what to do with myself. I got home and went to bed around my usual time. It was hard to fall asleep, because I was so tired. It's like there comes a time when you are tired and you are ready to lie down, but then if you keep going for hours after that, you become beyond tired, and your molecules hurt, and you can't even rest. But I did manage to fall asleep.
Saturday I got up. I got dressed and had breakfast. As soon as I did those things, I went grocery shopping. I went to get it out of the way so I could spend the rest of the day resting. I spent the day doing light reading, napping, and playing a computer game. I knew that I have homework to do, and bills to pay, and tax forms to fill out, but I also knew that I needed to recover from my big day the previous day before I could embark on such things. It really wasn't such a big day yesterday, just a few hours of walking around and talking to people, but that's more than I really can handle.
My goal for each week is to work full-time, do laundry, get groceries, and do homework. That is really a bit much for me, but I usually pull it off more or less. I don't cook and clean much. Those things require standing up. I don't go out at night. Well, once in a while I go to a concert, but I pay the price later and it's not something I would do on a regular basis. I don't engage in physically strenuous activities such as hiking or skiing. I am able to do light exercises such as short walks, yoga, Nia, a little gardening, and some short, slow rollerblading. I can't spend more than an hour a day in the aforementioned light exercises, and that's only on a good day. On a bad day, standing up long enough to take a shower is too much work.
So that is my life, and everyone tells me that I'm not really sick.
Chronic fatigue syndrome
I read two books about chronic fatigue syndrome recently: The Doctor's Guide to Chronic Fatigue Syndrome and Hope and Help for Chronic Fatigue Syndrome. A lot of what I read applied to me. The books were both published over 10 years ago. The authors wrote about how many doctors do not believe in chronic fatigue syndrome, or understand it. It's amazing that more than a decade later, that is still the case. My doctor told me that there is some debate over whether chronic fatigue syndrome exists, and I know from discussing some symptoms and tests with her that she does not know what she is doing when it comes to chronic fatigue syndrome. I tried changing doctors once, but I felt the new doctor was even worse, so I changed back.
I was better for a while. Last summer and fall, I thought I was cured. But the books say that that's what it's like. Sometimes you're better and sometimes you're worse. Even when you're better, you not as good as you were before. When I thought I was cured, I was ignoring the fact that I still had to avoid strenuous activity.
The books chronicle the struggle of going to doctor after doctor and being told alternatively that it is just a cold and will be better soon, that it might be something dreadful, that it's depression, and that there's nothing wrong with you. The books talk about how people with CFS are perceived as not looking sick. They describe how many individuals just give up on talking to anyone about being sick, because the responses people give just make it worse. Instead, patients just try to pass for normal. As the web site of the CFIDS Association of America says, "Recognize that although the person may seem 'normal' when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later."
The trouble with healthy people is that they can't comprehend that not all bodies work the same way theirs do. They think you just need to exercise more, socialize more, improve your attitude, or whatever, and then you will be fine. Sometimes I used to try to explain to people who said things like that that it doesn't work that way. But they would never believe me, so I don't even bother. I tell them once what things are like for me, and after that, I figure, if they don't believe me, that's their problem. I'm not going to bother to talk to people if they're not going to bother to listen.
The Doctor's Guide to Chronic Fatigue Syndrome says, "the single greatest treatment offered by the physician is an accurate diagnosis." I am so tired of everyone telling me, "You don't look sick," and, as a result of no one believing me, being expected to function as a normal person. I have started trying to find a doctor who can actually diagnose me. I don't know if I will succeed. So far I have just found dead ends.
I was better for a while. Last summer and fall, I thought I was cured. But the books say that that's what it's like. Sometimes you're better and sometimes you're worse. Even when you're better, you not as good as you were before. When I thought I was cured, I was ignoring the fact that I still had to avoid strenuous activity.
The books chronicle the struggle of going to doctor after doctor and being told alternatively that it is just a cold and will be better soon, that it might be something dreadful, that it's depression, and that there's nothing wrong with you. The books talk about how people with CFS are perceived as not looking sick. They describe how many individuals just give up on talking to anyone about being sick, because the responses people give just make it worse. Instead, patients just try to pass for normal. As the web site of the CFIDS Association of America says, "Recognize that although the person may seem 'normal' when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later."
The trouble with healthy people is that they can't comprehend that not all bodies work the same way theirs do. They think you just need to exercise more, socialize more, improve your attitude, or whatever, and then you will be fine. Sometimes I used to try to explain to people who said things like that that it doesn't work that way. But they would never believe me, so I don't even bother. I tell them once what things are like for me, and after that, I figure, if they don't believe me, that's their problem. I'm not going to bother to talk to people if they're not going to bother to listen.
The Doctor's Guide to Chronic Fatigue Syndrome says, "the single greatest treatment offered by the physician is an accurate diagnosis." I am so tired of everyone telling me, "You don't look sick," and, as a result of no one believing me, being expected to function as a normal person. I have started trying to find a doctor who can actually diagnose me. I don't know if I will succeed. So far I have just found dead ends.
Sunday, March 23, 2008
My quiz results
| Your Scholastic Strength Is Deep Thinking |
 You are talented at adapting, motivating others, managing resources, and analyzing risk. You should major in: Philosophy Music Theology Art History Foreign language |
| You Are a Red Crayon |
 You have a deep, complex personality - and you are always expressing something about yourself. Bold and dominant, you are a natural leader. You have an energy that is intense... and sometimes overwhelming. Your reaction to everything tends to be strong. You are the master of love-hate relationships. Your color wheel opposite is green. Green people are way too mellow to understand what drives your energy. |
| You Are Midnight |
 Whether you're a nightowl, living in a commune, or taking a vow of silence - you like to experiment with your lifestyle. Expressing your individuality is important to you, and you often lie awake in bed thinking about the world and your place in it. You enjoy staying home, but that doesn't mean you're a hermit. You also appreciate quality time with family and close friends. |
| You Are Picky When it Counts |
 But you're also willing to put up with a few flaws in your Mr. Right You should congratulate yourself on having a realistic approach to dating. You probably have quite a few great guys you can date! |
| You Are 33% Scary |
 You're a normal woman. You're not perfect, but you're pretty darn close. |
| You are a Hippie |
 You don't trust authority, and you do as you please. You're willing to take a stand, even when what you believe isn't popular. You like to experiment with ideas, lifestyles, and different subcultures. You always gravitate toward what's radical and subversive. Normal, mainstream culture doesn't really resonate with you. |
| Men See You As Choosy |
 You take a selective approach to dating, and you can afford to be picky You aren't looking for a quick flirt - but a memorable encounter It may take men a while to ask you out, but it's worth the wait |
| Your Ideal Relationship is Marriage |
 And that's marriage - with the right person. You're serious about settling down some time soon. Even if you haven't met the person you want to get hitched to! |
| Your Inner Muse is Euterpe |
 While you may or may not be musical... You love music and set life to your own personal soundtrack. And you are good at making anyone's heart sing! |
What Muse Are You?
Your Dominant Intelligence is Intrapersonal Intelligence |
 Reflective and thoughtful, you enjoy spending time alone. You are good at analyzing yourself - and knowing your true feelings. Totally self aware, you are in tune with your dreams and desires. A spiritual and philosophical person, your inner calmness inspires and helps others. You would make a great philosopher, researcher, or theorist. |
| You Are Psyche! |
 You're curious and creative with a total sense of wonder. Totally empathetic, you pick up on other's moods easily. Just be sure to pamper yourself as well! |
Monday, February 4, 2008
Links in a chain
Over the years, a few people I once considered my friends have told me, "You should be more like your sister." The implication was that I should be more adventurous. But that's not how I see things. The way I see things, we each have our own path, and the thing to do is to follow one's own path. My sister is the ultimate traveler while my mother is the ultimate homebody, but they are the same because both are following their own paths. My sister's life is more glamorous than my mother's, but glamor is irrelevant. Whether one's life is glamorous has little bearing on whether one is being true to oneself and living up to one's potential.
I feel that my grandmother, my mother, my sister, and myself are a chain of women across the generations. Even though our lives are very different on a superficial level, we are all carrying on the same tradition. We carry on the tradition of striving to follow our own paths rather than conforming to expectations. We also carry on the tradition of being the kind of person who would never say to someone, "You should be more like ____." Instead, we are the kind of person who says, "It's wonderful that you are yourself." We view others in a compassionate, respectful way. Although we recognize the validity of diverse viewpoints, we are selective about which people we become close to. We are committed to our family and those we have chosen as friends. We encourage the people in our lives to follow their own paths rather than telling them how they should be. We live life heartily and with integrity, but also diplomatically. We don't put up a fight against others, we just go our own way. The people in my family are role models to me not because of the number of adventures they have but because of the way they follow the path that is true for them, regardless of its glamor or adventurousness. I am one of them because I am true to me, and anyone who tells me I should be different from what I am is missing the boat.
Friday, February 1, 2008
Super Tuesday and the latest debate
Those of us who will be voting in the Democratic primary on Feb. 5 have two candidates to choose from. People in New Hampshire had more choices. There must be a better way to organize the primaries, so that people from all states have a range of choices. Maybe we could divide the country into 8 regions, and have a different primary day for each region. That way it would be more evenly divided. Also, the order of the regions could be different in different years.
The two candidates that I have to choose from aren't really that different from each other. They define their difference as being about experience vs. change. Obama says "I think what is at stake right now is whether we are looking backwards or we are looking forwards," while Clinton says we should need someone who can solve problems from day one. I think I prefer the experience over the change. The claims of change strike me as empty rhetoric. Politicians always like to claim they will bring change. I'd rather have someone who knows how to do the job.
So many people seem to think that being a good Christian means devoting your energy to condemning other people as sinful. In contrast, I think Christianity is about helping others. I liked what Hillary Clinton said tonight: that she opposed a law against providing any sort of assistance to undocumented immigrants because "that would have criminalized the good Samaritan and Jesus Christ himself."
Apparently there have been people concerned that Obama is secretly a Muslim. It seems like a strange worry to me. Anyhow, to address that concern, Obama gave a speech a while back saying how Christian he is. I didn't like the way he seemed to accept the premise that it's important to be Christian in order to be qualified to be President of the United States.
But I think both of them care about helping the downtrodden, getting people good health insurance, and ending the war in Iraq. Either way, it would be refreshing to have that kind of president.
The two candidates that I have to choose from aren't really that different from each other. They define their difference as being about experience vs. change. Obama says "I think what is at stake right now is whether we are looking backwards or we are looking forwards," while Clinton says we should need someone who can solve problems from day one. I think I prefer the experience over the change. The claims of change strike me as empty rhetoric. Politicians always like to claim they will bring change. I'd rather have someone who knows how to do the job.
So many people seem to think that being a good Christian means devoting your energy to condemning other people as sinful. In contrast, I think Christianity is about helping others. I liked what Hillary Clinton said tonight: that she opposed a law against providing any sort of assistance to undocumented immigrants because "that would have criminalized the good Samaritan and Jesus Christ himself."
Apparently there have been people concerned that Obama is secretly a Muslim. It seems like a strange worry to me. Anyhow, to address that concern, Obama gave a speech a while back saying how Christian he is. I didn't like the way he seemed to accept the premise that it's important to be Christian in order to be qualified to be President of the United States.
But I think both of them care about helping the downtrodden, getting people good health insurance, and ending the war in Iraq. Either way, it would be refreshing to have that kind of president.
Saturday, December 1, 2007
We all just want to be understood
When someone says something to me that makes me feel annoyed, misunderstood, or hurt, my impulse is to tell someone else about it. The reason for that is because there is a certain piece of me that has not been understood or accepted. Therefore I take that piece around to somewhere else to try to get understanding and acceptance for it.
One of the things that bothers me, and which often leads me to having a piece in search of acceptance, is people who cast judgment on other people's lives. When I take my piece around for acceptance, a side effect of that acceptance could be criticism of the person who rejected that piece.
Does this mean that I don't think other people should judge, but that it's okay for me to judge, or for others to judge as long as they agree with my judgments? I like to think that there's a difference. The difference is between judging someone's actions as being inherently bad and being disturbed by someone's actions. If someone bothers me, that means I want them farther away from me. It doesn't mean that the person is inherently wrong.
There is a place for judgment. There are some actions that are wrong, but that's not what I'm talking about. I'm not talking about people who are steal or kill or cheat. I'm talking about people whose outlook or interpersonal style does not mesh with mine.
It bothers me when people make judgments about how other people live their lives. I don't like it when people think someone else should be working harder to improve themselves in some area, whether it's eating a different diet, exercising more, advancing their career, or improving their interpersonal skills. I don't think one can judge those kinds of things. Each person has their own preferences, goals, and barriers, and no one else can really understand what another person wants or has to overcome.
When someone says something that leaves a part of me seeking acceptance or understanding, I take it around to others in search of acceptance. All the other person has to do is say they see where I'm coming from, or not say much at all about it. But a lot of people don't do that. A common mistake people make is explaining that I really should not be bothered by the thing that bothers me. Apparently they think this will cheer me up. However it comes across as saying that I have no right to feel the way that I do. Even after I explain to people that the way I want them to be supportive is by accepting my feelings, they still explain to me why my feelings are wrong. This just leaves me feeling more misunderstood, so then I move on to somewhere else to seek understanding and acceptance.
When someone consistently says things that bother me, then I just stop talking to that person. It could be topic-specific. It could be that I find I can talk to someone about impersonal topics, but that there's no point in talking to them about my personal dilemmas.
There's a place for dialogue. I don't expect everyone to instantly understand me. But if someone persists in responding to me in ways that I don't like, even after I explain where I'm coming from, then after a while, I just have to stop sharing with that person in that way.
People can be close to the extent that they are on the same wavelength, but they also have to give room for distance in the areas where they are not on the same wavelength. I can't expect everyone to be close to me in all ways. If I strive for that, I'll just be frustrated, and won't be able to appreciate the ways in which I do connect with people. The complications arise when the ways I want to be close and distant with someone differ from what that person wants, or when circumstances put me into a situation such that a person is part of my life more or less than I would like.
One of the things that bothers me, and which often leads me to having a piece in search of acceptance, is people who cast judgment on other people's lives. When I take my piece around for acceptance, a side effect of that acceptance could be criticism of the person who rejected that piece.
Does this mean that I don't think other people should judge, but that it's okay for me to judge, or for others to judge as long as they agree with my judgments? I like to think that there's a difference. The difference is between judging someone's actions as being inherently bad and being disturbed by someone's actions. If someone bothers me, that means I want them farther away from me. It doesn't mean that the person is inherently wrong.
There is a place for judgment. There are some actions that are wrong, but that's not what I'm talking about. I'm not talking about people who are steal or kill or cheat. I'm talking about people whose outlook or interpersonal style does not mesh with mine.
It bothers me when people make judgments about how other people live their lives. I don't like it when people think someone else should be working harder to improve themselves in some area, whether it's eating a different diet, exercising more, advancing their career, or improving their interpersonal skills. I don't think one can judge those kinds of things. Each person has their own preferences, goals, and barriers, and no one else can really understand what another person wants or has to overcome.
When someone says something that leaves a part of me seeking acceptance or understanding, I take it around to others in search of acceptance. All the other person has to do is say they see where I'm coming from, or not say much at all about it. But a lot of people don't do that. A common mistake people make is explaining that I really should not be bothered by the thing that bothers me. Apparently they think this will cheer me up. However it comes across as saying that I have no right to feel the way that I do. Even after I explain to people that the way I want them to be supportive is by accepting my feelings, they still explain to me why my feelings are wrong. This just leaves me feeling more misunderstood, so then I move on to somewhere else to seek understanding and acceptance.
When someone consistently says things that bother me, then I just stop talking to that person. It could be topic-specific. It could be that I find I can talk to someone about impersonal topics, but that there's no point in talking to them about my personal dilemmas.
There's a place for dialogue. I don't expect everyone to instantly understand me. But if someone persists in responding to me in ways that I don't like, even after I explain where I'm coming from, then after a while, I just have to stop sharing with that person in that way.
People can be close to the extent that they are on the same wavelength, but they also have to give room for distance in the areas where they are not on the same wavelength. I can't expect everyone to be close to me in all ways. If I strive for that, I'll just be frustrated, and won't be able to appreciate the ways in which I do connect with people. The complications arise when the ways I want to be close and distant with someone differ from what that person wants, or when circumstances put me into a situation such that a person is part of my life more or less than I would like.
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