Chronic illness

It's only 12:30 a.m. which is not that late for me, I guess. The sky is a strange color out on the horizon tonight with some deep purple tint to it. Unusual. It's been raining, but the rain has stopped. No stars. Too much cloud coverage directly overhead.

Some days are worse than others, but most nights lean toward pain quite heavily. I'm wondering if it isn't a bit easier though because I don't have to meet expectations from myself or others when it is dark and late into the night. I feel my pain and weariness but there isn't worry of anyone else who might see me so there might a bit of relief in that feeling that isn't present during the day. I'm not sure relief is the best word to describe this, but perhaps it works to a certain degree.

I just saw an episode of House where the patient was a man with chronic pain and he told the doctor it was easier for him (Dr. House) to live with his pain because he didn't have to put on a brave face for a family. Something to think about, but alas, pain is pain.

I just started reading a book about chronic illness and the author said that he thinks "acceptance is poison". I'm trying to find the passage in the book, but I can't in the amount of time that I can focus. My head hurts too much to keep looking. The author interviews five people with illness but so far I've only read about two of them and they have terminal illnesses, which is different than chronic, at least I think so. Terminal is chronic, but chronic isn't necessarily terminal.

He does a good job capturing something sensitive to me in the introduction. This is a lengthy passage, but it's true for me. (Strong in the Broken Places, voices of illness, a chorus of hope, by Richard M. Cohen)

"...With chronic illness, every facet of a once-robust life is overtaken and redefined. From the ability to find and hold jobs to the capacity to build and sustain personal relationships, the facts of a sick person's world change dramatically. The slow slide down carries us, and we lose control.

Still, we go on. We double the effort, for what is the option? Too often, we remain silent. We are a hidden population, invisible except to ourselves and those who love us.

...We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer one another. Nobody will speak for us with the authority we bring to our own stories. Where so many among us find the resolve and the inner strength to rise up and keep going is a mystery to me. That we do serves as pure inspiration."

I wonder if we are only an inspiration to ourselves (meaning our community of the ill) since others don't know what it is there is to be inspired about.

My book sits on the shelf. I pulled it out yesterday and started to scribble a little bit in the margins. I did a bit of research to see what else is out there that would be comparable to what I have written. What I have is fairly unique in the format that I've devised. Yet, my book sits on the shelf. I have chronic fatigue after all. My world is small. I have no network. Most of the books that have been written about CFS are by doctors or by people that have recovered. Makes sense. The rest of us lack the energy to go through the process of trying to get published for the first time, or so it would seem to me. Nevertheless, I'm "pure inspiration". ta da!

carry on.

Life's choices

When we were living in Layton, UT a builder gave us tickets to Parade of Homes one year. I remember driving in a neighborhood with big homes and seeing young couples out in their driveways with small children. I wondered how they could afford so much when they were so young. Maybe they could, I don't know their individual situations. I just couldn't help but marvel at what I was seeing.

We lived in apartments for seven years after we got married. The only way we were able to get into our first house was because there was no down payment involved. In fact, when we moved from California to Layton we lost our deposit that we had put down on an apartment after we found our house. I remember debating on and on throughout the day trying to decide if we could afford a house payment that would stretch us to the limit. We dove in. We built up equity over nine years - put in a yard, fence, finished the basement, painted and replaced carpet, new roof, etc. We used the money we made on that house to purchase the land we our now living on.

We then built a house that is too much for us, though at the time I trusted that it was part of what we planned for. What if we would have done this, or that? I don't know how life would have been, or could have been. There is no way to know how things would have been otherwise. I certainly didn't plan on getting sick in 1998 when we signed the papers to close on our property, and then leave pretty much ALL of the house building decisions to my husband. If we had to build this house over again, I would certainly do it differently. In fact, sometimes I think I could live very, very simply if I didn't have kids to think about. (Yes, there's a good argument against that statement. Feel free to take it up.)

Bottom line: we make decisions based on the information we have at the time and with the life experience we have in that moment. I don't know how people say they have no regrets in life. I have regrets. There are decisions I made in the past where I wish I would have had more insight to have made a wiser and more prudent choice. But, that's life. We learn from our mistakes. And, sometimes our mistakes plague us for a very long time.

I still wonder about those young couples. We had a blip of time when people could get married and buy a house, have two cars, all the appliances they wanted, etc. and not even blink an eye. Now we are trapped in a world of work, work, work and people may not be able to afford everything they want even when they are working beyond full-time. It's interesting to consider that I'm one of those "old" people who can actually put a few years' worth of life into a perspective of decades. I need to respect that about myself. The sad thing is that one could think that I would be past making any more mistakes in life because I have a few years' of decision making experience under my belt. 'Tis not so.

Carry on.