The road to better things

Someone told me, "I deserve better than this." She was speaking in part of her children growing up and leaving her. I don't see it quite that way, in that her children are seizing life, and what could be better than that? But what I do see is that now it's her turn to find a life worth seizing. She has a job that does not make use of her talents. In that respect, she is an eagle trying to live the life of an ant. She is a unique and creative person. I find that people I know who are more eccentric tend to have a more difficult time finding work, friends, and romance which will fit them. We all have our unique ways of shining, but we live in a world that has more niches for some kinds of shining than for other kinds of shining. Difficulty finding a niche in the mainstream is no indication of unworthiness. I can see that when I look at other people better than when I look at myself. We all have so much to offer. It's just not always easy to find a place where our gifts can be used.

Her situation resonates with me. I don't have kids, but I have been in the situation of younger people taking what they need from me and then moving on to better things. I want to find a place where I'm not something to be disposed of on the road to better things, but instead I am a better thing.

We all need to be in mutual relationships. We need to be with people who need what we have to offer and who give us what we need. But sometimes people aren't yet prepared to give, they just need to be nurtured. Parents and others take care of these people. Being taken care of may be what the person needs at the time, but ultimately, they will need to be in mutual relationships, so they will need to move on. Those of us who take on the task of nurturing those who aren't able to give back end up being in the position of being left behind. It's just one of the side effects of the job, but it doesn't mean that it's not a job worth doing.

Life with undiagnosed and/or chronic illness

When you have some sort of illness or injury, they tell you something about how long it will last and what symptoms you will go through, and it really helps to know what to expect. Having an undiagnosed illness is the same way -- it has its own set of experiences -- but no one tells you what they are. So as a service to anyone who may be in that boat, here are some things you may experience:

• Time after time, you'll think that getting cured is just around the corner, whether because you have a good day, or because you start a new treatment, but then you won't be cured.
• When you feel better sometimes and worse sometimes for no apparent reason, you'll be looking high and low for a reason. You can become quite superstitious, suspecting everything that you did and everything that you ate of having an impact.
• People will tell you, "You don't look sick."
• People will tell you that it must be psychological.
• You will frequently doubt your own knowledge of yourself. With everyone telling you nothing is wrong, and you not wanting anything to be wrong, it's easier to just believe it and try to live like a normal person.
• You'll make the rounds of doctor after doctor, and every one has a different theory, a different round of tests, a different set of drugs for you to take. The ineffective tests and treatments will take a toll on your already weak body.
• You try to avoid talking to your doctor about what is going on with you, because you don't want to be saddled with more useless specialist visits, tests, and drugs, nor do you want to be told again that there is nothing really wrong with you.
  
• You drastically modify your lifestyle to avoid things that require energy, like having a social or recreational life, and you start to take it for granted, to think that this is a normal way to live.
• You can't have friends, because friends expect you to be able to make plans to do things with them. You can't make any plans for future days, because you don't know which day will be a good day and which will be a bad day. Except you do know most likely you'll be too tired to do whatever the other people want to do.
• The Spoon Theory gives a description of life with chronic illness, though in this case, the person knows what the illness is.

2007-08 Best TV shows

For the past few seasons, my favorite TV shows were Boston Legal and Veronica Mars. This season, Veronica Mars was gone, but there was a fitting replacement in Pushing Daisies.

Pushing Daisies was only on for 9 episodes in the fall, and I think I only saw four of them. It is due back next fall. I call it a fitting replacement for Veronica Mars because I think both appeal to a younger, science-fiction/fantasy, light-hearted sort of crowd, while Boston Legal may appeal more to liberal intellectuals.

I like Pushing Daisies because it is funny, quirky, has good values, and is packed with stuff. What I mean by packed with stuff is that they just rattle off clever puns so fast that you may not even notice them all the first time around.

I like Boston Legal because it is quirky, hilarious, discusses important issues, and treats its characters with respect. This is a show that features a midget, a transvestite, and a man who purrs whose girlfriend left him for an iPhone, and which treats such characters with respect while at the same time taking full advantage of the potential for humor. I like the fact that there are characters in their 60's or so who are real people, people who still experience romance and friendship just like younger people do. You don't see that so much in TV and movies. I like the depth of caring the characters show toward each other. In particular, I'm thinking of Shirley's love for Denny. They dated a long time ago. She is a powerful, intelligent woman. He is losing his marbles, and something of a buffoon. He wants to get back with her romantically, and shows it in very immature ways, but she sees past that and loves him as the man who has been a part of her life for decades. Also, the friendship between Denny and Alan is the centerpiece of the show. It's rare to see a friendship between two men who will say "I love you" to each other. They're not type of people who are always talking about their feelings either, they are real men's men, they just happen to have a strong friendship. There are so many so-called comedies which to me are just boring and stupid, but Boston Legal never fails to to be funny. At the same time, it also raises awareness of important issues.

I'd also like to give honorable mention to Private Practice. It's not really any better than the average drama (e.g. Brothers and Sisters, Grey's Anatomy, Boston Public, The Practice, Northern Exposures, Men in Trees, Desperate Housewives, Picket Fences), but I like the way that the characters have been around the block a few times. These are not unspoiled youth seeking true love, whose happy ending comes when they and their love interest decide to get together. These people already found their true love, got married, and got divorced.

Sick people are such a bore

Sick people are such a bore. They're always complaining about their ailments, and they never want to do anything fun like going to a concert or hiking or skiing or rollerblading. But even more of a bore than being around a sick person is being one, because then you can't leave the room and get away from it, you can't do fun things, and not only do you hear all the spoken complaints, you also here the ones kept inside, you hear your body constantly complaining to you.

Chronic fatigue cartoon

Continuing on the them of chronic fatigue syndrome, here's a cartoon: http://www.chronic-illness.org/comic/relapse_day.html

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
...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.

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.