Thursday, May 20, 2010

A few Good Days

I've had 3 really good days in a row. I don't know what to make of it. I'm just trying to enjoy it while it last. Lets see what happens...

Tuesday, May 18, 2010

Trying to overcome to feel "normal"

There are two things I hate the most about my disease.
I hate not knowing how well my body will function from day to day. Never being able to make plans and not panic that I'll be broken down that day. There are only two things in my life right now that I "make myself do" no matter how bad it gets. I go to all my son's baseball games and practices. (now ask me if I've ever had to go to the van and lay down....um yes.) I go to work two days a week for 3-4 hours. (now ask me if this is easy? ask me if I've ever sat down or had to leave early....) You might ask why I force my fibro riddled body to go through that? Well the answer is quite simple really. To feel normal. To have something in my life that I can grasp on to that seems like me. The me that still resides in this broken down body.
The second thing I hate is that nothing I do to feel better works twice or for very long. No medicines no method or theory ever continues to work. I can eat green beans for dinner, take a long hot bath, stay away from caffeine and take two Tylenol pms at 9 and go to bed at 9:15. The next morning I feel like a million bucks. I do the same thing the next night, NOTHING. The doctor gives me a miracle drug,,, it works for a couple months, then nothing....

Yet, even as I face these difficulties, I am reminded that this is my life, my body, my one chance. There are no do-overs in life. I have to make it as beautiful as I can.


"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering." ~ Ben Okri

Monday, May 17, 2010

The Letter to Normals

There are the things I would like you to understand before you judge me...

Please know that being sick doesn't mean I'm not human. I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don't say, "Oh, you're sounding better!".

I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't mean that I can stand ten minutes, or an hour. It's likely that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat 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 quite possible (for me, it's common) that one day I am able to walk to the park and back, and the next I'll struggle to reach the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

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 no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm 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 afford to 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, 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. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most importantly, I need you to understand me.