World of Chronic Pain: New Year New Life

Thursday, January 3, 2008

New Year New Life

Happy New Year! Yeah, right...I slept most of New Year's Day, woke up about 3 pm, read about 10 hours then struggled to sleep.

A big storm is coming in, supposed to go on several days, from north of here all the way down to central California. Heard from all family in CA the last few days, they're all anticipating the storm as well. We'll stay comfy and warm with the dogs and plenty of books.

It's funny, the weather the last 2 days has been 10 degrees warmer, night and day, and you would think I'd be in less pain! I am, but just mentally not all there. I still can't make myself do anything but read, it was hard to get on here and even post.

I'm going to try to go into town (50 miles each way) by myself next week, there is a very long list of things that need doing, I have a dr. appointment anyways. It will be an all day trip from around 7 am to at least 3 pm if not later.

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To the Source of the Flow-Dean R. Koontz

All of us are travelers lost,
our tickets arranged at a cost
unknown but beyond our means.
This odd itinerary of scenes
--enigmatic, strange, unreal--
leaves us unsure how to feel.
No postmortem journey is rife
with more mystery than life.

Tremulous skeins of destiny
flutter so ethereally
around me--but then I feel
its embrace is that of steel.

On the road that I have taken,
one day, walking, I awaken,
amazed to see where I have come,
where I'm going, where I'm from.

This is not the path I thought.
This is not the place I sought.
This is not the dream I bought,
just a fever of fate I've caught.

I'll change highways in a while,
at the crossroads, one more mile.
My path is lit by my own fire.
I'm going only where I desire.

On the road that I have taken,
one day, walking, I awaken.
One day, walking, I awaken,
on the road that I have taken.

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LETTER TO NORMALS - from a Fibromite

These are things that I would like you to understand about me before you judge me - You may look at me and think that nothing is wrong to begin with -

Please understand that being sick doesn't mean I'm not still a human being. I sometimes have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I constantly worry about what work I can't do, my family, friends and I love to hear you talk about what's going on with you!

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable, but I've been sick for years. I can't be miserable all the time, I try to work hard at not being miserable - but if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. If you say, "Oh, you're sounding better!" I'm sounding better, I'm sounding happy because I can at that particular moment.

Please understand that being able to stand up and walk around for five minutes doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's likely that doing it has exhausted me and I'll need to recover - imagine an athlete after a race. You couldn't repeat that right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please think of the above paragraph substituting "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's common for me that one day I am able to walk to the mailbox and back (about a mile), but the next day I'll have trouble getting to the kitchen. Please don't attack me when I can't do it again by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. I may cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that my favorite phrase of the moment might be "I'll do it tomorrow" and that's because I can't do it at this moment, and I REALLY do want to do it.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is appreciated and I would love to do it - if I could.

Please understand that if I say I have to sit down/lie down/take these pills now, that's because I have to do it right now - it can't be put off or forgotten just because I'm/you're doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well or have given up, it's because I have had almost every single one of my doctors/friends/family suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro would know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW NOW.

If after reading this, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor and do what research I can. It may look like I'm doing nothing different from what I did six months ago, and if that's the case, it's because what I'm doing is currently something that is helping more than anything else I've tried and I don't want to get on another "roller coaster" ride at the moment.

Please understand that getting better from an illness like this does not happen, you learn to live with and deal with it the best you can. People with Fibro have so many systems in their bodies out of whack, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me -

THANK YOU!

World of Chronic Pain

Thursday, January 3, 2008

New Year New Life

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To the Source of the Flow-Dean R. Koontz

LETTER TO NORMALS - from a Fibromite