Monday, March 31, 2008

Chronic fatigue cartoon

Continuing on the them of chronic fatigue syndrome, here's a cartoon:

I like the cartoon for the same reason I like the warning sign for the t-shirts and sweatshirts: because it really grasps what my life is like in a way that most people in my world don't. But I suppose to anyone who isn't going through a similar situation, the cartoon and the warning sign might both seem a bit pointless.

Chronic fatigue t-shirt

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're just having a bad day must be nice not having to go to work
...I wish I had time to take a nap
...if you'd get out more're just getting older
...if you'd get more exercise can't be that bad's all in your head're just depressed
...there are people worse off than you'll just have to tough it out 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.

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.

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.

Sunday, March 23, 2008

My quiz results

Your Scholastic Strength Is Deep Thinking
You aren't afraid to delve head first into a difficult subject, with mastery as your goal.
You are talented at adapting, motivating others, managing resources, and analyzing risk.

You should major in:

Foreign language
You Are a Red Crayon
Your world is colored with bright, vivid, wild colors.
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
You are more than a little eccentric, and you're apt to keep very unusual habits.
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
Like most sane women, you want a great guy who will treat you well.
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 scare men off ocassionaly, but only very weak men.
You're a normal woman. You're not perfect, but you're pretty darn close.
You are a Hippie
You are a total hippie. While you may not wear birks or smell of incense, you have the soul of 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
Men notice you light years before you notice them
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
You've dated enough to know what you want.
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
You are most like this muse of music.
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!
Eternally in search of purpose and insight.
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!