Monday, October 24, 2011

Being Good to Yourself

Among performers, the week before a show opens is known as hell week. No matter how carefully you plan and prepare there are always unforeseen obstacles and emergencies. Hell week for Grease at my school was no different. Within a few hours, I jumped each hurdle. We had three very successful performances. Playing piano for and co-directing a show is intense. I also had three Masses to play this weekend and our traditional Saturday cast pig out at Village Inn after the show.

Today, I tried to take it easy. I did my after school rehearsal with the show choir. Some of the girls stayed late with me because we were researching options for the spring show. As I left school, I mentioned that I should go walk 3 miles. I have slacked during the last weeks of the show. One of my seniors turned to me and said, "Miss Linda, you need to go home and rest. Are you crazy?" She was right.

We are so used to feeling tired or sick or in pain, that we often push ourselves to compensate. Where a person with a cold or the flu will stop, rest and recover, we know there is no real recovery-just periods that are a little better than others. So, we soldier on and on and on. We need to be good to ourselves. (I don't follow my own advice very well, but my friends and students remind me.)

We expect an awful lot of ourselves. A useful exercise is to imagine that you are a healthy person and that someone you care about has a chronic illness. What would you expect of them? What help would you give them? What advice would you give them? Now, apply that to yourself. Why do we expect so much of ourselves? Why don't we ask for and accept the help we need?

We have to love ourselves enough to pay attention to what we need. We have to love ourselves enough to allow others to help us. We have to love ourselves enough to be good to ourselves.

Friday, October 21, 2011

Not Alone Anymore

Chronic illness is isolating. Susan Sontag, in her book Illness as Metaphor, talks about how those of us with chronic illness have been given a passport from the land of the healthy to the land of the sick. We find ourselves in a culture that we don't understand. When we are among the healthy we feel like foreigners. When we find another person with our condition or illness, there is an instant connection. We are not alone anymore.

Last fall, I was on retreat with 19 high school girls. Before the retreat, I knew that one young lady had Type I diabetes and some other autoimmune issues as well. Before we all went to sleep, another girl found a test kit and brought it to the one with diabetes asking, "Is this yours?" The girl with diabetes opened it, looked puzzled and said, "No, this is not mine. There is another diabetic here!" She looked around with eager anticipation. They connected quickly. Then when it was time for them to test, they happily sat together on the same cot to test their blood sugar. They were not alone anymore.

A few weeks ago, I met a parent of one of my students. I noticed immediately that she had rheumatoid arthritis, but did not glance at her hands again. At one point in the conversation, I mentioned that I have lupus. She knew. I am pretty public about my lupus so most of the people with whom I come in contact are aware. She said that she had RA. I told her that I noticed. In March, I am going to France with a group of high school students and parents. This parent is one of them. I ran into her tonight after opening night of Grease and we talked about the trip. The stress of international travel can be an issue for those of us with autoimmune disease. She said, "I am going to bring some prednisone just in case." I said, "Good idea, I will do the same." In that brief exchange about prednisone, we were not alone any more.

When people come to our lupus support group for the first time they often cry. The first tears are always about the difficulty of admitting that you have this disease. Tears near the end of the meeting are usually about deep relief in realizing that the new person is not alone anymore.

If you have a chronic illness, you may feel alone and isolated. You don't have to be alone. Most disease foundations have support groups. If you can't find one near you, there are countless on line groups. You don't have to be alone. You can reach out and connect to people in person and online and then look around and say, "There is someone like me here. I am not alone anymore!"

Friday, October 14, 2011

What Feels Good?

It's easy to get so caught up in coping with chronic illness that we forget what feels good. In fact, it is so easy, even for healthy people, to get so caught up in the daily grind that they forget what feels good, too. Decades ago, when I was caught up in raising small children, going to college, and buildling my career, I read The Language of Letting Go by Melodie Beattie. I already had lupus then, but did not know. The doctors chalked up my fatigue, joint pain, and frequent colds to stress and working too hard. Anyway, in one of the daily meditations, Beattie asks, "What would feel good? What wouldn't feel good? What do you want? What don't you want?" I wept. I was so busy with my life and so busy being tired that I could not answer those questions.

Fast forward 25 years or so. I am reading and working through The Artist's Way: A Spiritual Path to Creativity by Julia Cameron. More than once, the reader is instructed to make a list of 20 things she enjoys doing. The first time, I could think of six and then got stuck! For number 7 I wrote, "OUCH! STUCK!" Since then, I am happily remembering little things that bring me pleasure and incorporating them into my life.

When we are feeling down, overwhelmed or sick we don't remember the things that make us feel better. Why not make a list for yourself? Add to the list as you remember what feels good. Post it where you can see it so when you really need a boost, you will have a reminder. Just because we are sick doesn't mean we have to deny ourselves!

Sunday, October 9, 2011

I'll Take My Lupus, Thank You!

Yesterday, I played a funeral for an 18 year old boy who was killed in a motorcycle accident. Playing the organ for the funerals of children and teens has always been the hardest part of being a church musician. Later on, I learned that this was the third child in this family to die tragically. The first died in a car accident and the second was shot. I can't imagine the pain of those parents. In light of what happened to this family, I am thankful that my family is healthy and alive and that all I have to deal with is lupus. It seems very insignificant in comparison.

Along the way, there have been people who told me to be thankful that I don't have something worse. Considering that the lupus affected my heart, lungs, bone marrow, blood, kidneys, joints and brain, that was a little hard to imagine. I would think to myself, "How dare you say that? You have no idea what it is to be me, living with lupus." Someone else's suffering does not make our suffering any less. Sometimes, I would respond with a smart remark like, "Yeah, I am so thankful I don't have leprosy and that my nose isn't falling off on the sidewalk!"

I now know that 125 million Americans have some kind of chronic illness. I have learned to live well with lupus. My "new normal" life is pretty good. I know the wolf. I have learned to keep him calm most of the time. So, as I write I am thinking that if I have to have something I'll take my lupus, thank you!

Saturday, October 1, 2011

Thanks for the Memories

We all have memories, good and bad. But did you know that good memories can be used for good or bad? Let me explain. I hear patients complain all the time that they can't do what they used to be able to do and that's true. If remembering what we used to be able to do makes us feel angry, depressed, frustrated, or helpless then those memories are being used for bad. What we think causes what we feel. What we feel affects our health. There are two ways to change this negative reaction to our good memories.

The first is to recognize that no one stays the same. No one! As people age normally they are not always able to do the things they did when they were younger. It's the same for those of us with chronic illness, only our losses occur sooner and may be more dramatic. But the point is, if you are alive, you are going to experience changes in ability and energy. Welcome to the human race!

The second is to use those memories for good. Here is a personal example. This morning was the first break in the summer heat for Tampa. I went out to walk at 7 AM. It felt like a late June day on Long Island. As I walked along the water's edge and heard the waves gently lapping against the sea wall, I thought of how I spent endless teen age summers on my little orange and black boat that I named Gazorpf. Half way through the walk, I stopped to watch the sun coming up, listen to the water, smell the salt air, and feel the soft breeze. I was transported to those carefree teen days on the water.

I could have thought differently. I could have thought: I'll never be able to do that again. I can't even be in the sun very long. I don't have a boat. I was healthy then. I wish I wasn't old [OK I am 59 and that's not old!]. I wish I didn't have lupus. This is not fair. My life will never be the same."

Instead, in my mind I went back to those carefree days. I let myself feel the delirious freedom of being out on the water without a care in the world. I came home happy, recharged and ready to start my day.

When you think about good memories, what is your reaction? Are you mad, sad, or frustrated because you can't have those experiences now or do you look back at those memories as treasures that can bring you great joy even now? Can you choose your reaction? You bet you can! The difference between people and animals is that we get to choose our reaction.

Is there a song, a place, a picture, a smell or a taste that brings back good memories for you? Can you indulge yourself in opening that treasure chest and delighting in the memories that you have stored there? How lucky you are to have those good too!