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What do you tell others?

© by Scott E. Hancock

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A friend e-mailed me the other day. She said she had heard I wasn't feeling well and asked what was the problem. I was in a bad mood, a depressed mood, and so I decided what the heck, I'll tell her.. so I wrote back....

" - as for medical problems... well, we’re all fighting off entropy I suppose. I have been diagnosed as having Fibromyalgia. That’s a big brother to Chronic Fatigue Syndrome. Basically it means I'm mean and cranky most of the time.

There is a news site about it at alt.med.fibromyalgia and I have learned a lot about it there. Sheesh, - and I just thought all those aches and pains meant I was just getting old...

If you don't know about Fibro, it's not life threatening... at least in the sense that you get sick and die. It just makes life often very painful. See, it’s a problem that cranks up your pain output and turns standard pressure sensors into high voltage pain sensors. The following is a tag line from a person who often posts to that news site: ______________________________________ | | ________| Pain is an illusion.... |_______ \ | An illusion that... | / \ | really, Really, REALLY HURTS | / / |____________________________________| \ /__________) (_________\ I know just what that means...and so do a lot of others.

When Fibro acts up, you know, or at least you believe that you are not really physically damaged, there is no trauma, no open wound. No bleeding. But you feel like you are the soul survivor of a plane crash, and every 60 watt bulb becomes the sun.. and you have no eyelids and every voice becomes a screaming buzzsaw, and your head is 90% ears, and you can't sleep because simply to lay in bed hurts too much where your body touches the mattress. And every thing hurts, really, Really, REALLY HURTS.

The doctors tell you if you are good, if you try every pill, if you live right, if you sleep right, if you exercise right and if you eat right... then maybe... just maybe, the pain MIGHT go away....for a while. They don't know for how long. Some people go for years without the pain. Some for weeks. Some only for days.... before it comes back.

Want to know more about what it is actually like, this pain? Think of the last time you were really seriously sick. When everything hurt. When your head felt like it had been stuffed with sawdust and you got dizzy if you moved. When it hurt so much that all you wanted to do was sleep...or die to get it over with. Now picture what it would be like if you felt that way, - and someone came along and hit you a thousand times all over your body with a large blunt hammer. That’s what the pain of Fibro is like sometimes.

But believe it or not, that’s not the worst part of Fibro. The worst part, at least for me, is something they call Fibro-fog or brain fog. When the overall pain just gets so bad you are no longer able to think. You really can't. You forget where you parked your car. You can't finish a sentence.. or a thought. When the white noise of pain is just too loud to hear yourself think. You get really really stupid and you do really stupid things.. but somewhere, somewhere deep inside, you know just how stupid you have become... ..and it kills you. It just kills you. You can't answer even really easy questions, ones you KNOW you should be able to, you just can't. The easy ones, like remembering your own telephone number or what it is you should do next to start the clothes dryer. They joke about brain fog, Fibro sufferers do, because often it does cause them to do comical things, like putting the dishwashing soap in the freezer. But behind the humor is the terrifying fear that one day they will do something so stupid that it will cause someone they love to be hurt or killed. They don’t talk about that fear much, but it is always there. There are days I have not gone to work because of that fear, when the brain fog and the pain are so great, I fear I may not be able to even simply get to work safely. I don’t want to kill anyone.

I've read that 2-4 percent of the American population (or more) will get Fibro to a greater or lesser degree. Most will never know they have it. It gets misdiagnosed all the time. Historically nine out of ten who do get it will be women, but doctors are saying now they think most men hide mild cases. (Real men don’t hurt.) You usually get it between the ages of 45-50, but 11 yr. olds have gotten it. They don’t know what causes Fibro, but it is often triggered by a significant event. A car accident, a serious illness, the death of a loved one, or job stress. Sometimes its two or three of such things at the same time that do it. Many suffers can tell you exactly when it happened. I can.

Another symptom of Fibromyalgia (and an important one) is often severe mind numbing depression. Not only is it hard not to be depressed with what else Fibro brings you, but among those other things Fibro does to you is that it upsets the chemical balance in your brain and profound depression is often a result. It should be to no surprise then that suicide is the number one cause of death of Fibromyalgia sufferers.

Fibro is mean and it's nasty. You can get it all at once but you can also get it gradually. Often that way it starts out as a "sore spot" that feels like a bad bruise...only you are not bruised. Then you get another. It may go away. But one day the sore spot comes back...and brings lots of friends. You may suffer chronic sore throat and sinus problems, and feel mildly feverish. But there seems to be no fever or perhaps a chronic low level one. There are nerve chemical changes, and brain bath chemical changes. But the doctors don't know why the changes occur... or what many of them mean. They have "Ideas" and "Guesses". And they don't know why for some people it goes away...at least for a while. Not all doctors have heard a lot about Fibromyalgia. It has only been officially recognized as a separate medical entity for only a few years. Many of the doctors who have heard something of it are misinformed (having heard what is now old data) and will try to treat it as a form of rheumatism, which it is not (though both are immune system dysfunction related).

But back to me. The last several months I have been having a "flare-up". All the symptoms have been waxing and waning very strongly and I do not know how much longer this episode will last. I do not know when the pain will gradually go away.. or when I will regain my confidence in my ability to interact productively in a business meeting again, - or when that nagging self doubt about my ability to drive safely will finally evaporate. Because of this I have been thinking about taking off a month or so from work to try to get over the hump. If I get over it. If I don't get over it, I may have to try for a medical retirement. I don’t want to leave that way, but if you can't do the job you can't do the job.

So dear friend, I don't mean to be crying on anyone's shoulder, and I don't mean to heavy up on you. But you did ask. In a way it's really tough. An E-ticket ride through hell. I know what it is like to be sitting in the mouth of Moloch. But friend, it could be so much worse. There are more terrible things out there I could have been inflicted with and I am grateful that I have not been, I truly am. And in part because of that I will persevere. I will "get better". Survival instincts run deep and strong despite all. I will keep seeing doctors, and taking pills, and trying to eat the right things, and do all the right things and live the right way. And maybe, just maybe, it will go away for a while.. or at least stay at a "bearable" level...a point where pain killers and nerve deadeners still work. And I WILL finish that book I'm working on, - and go on to write others.

I WILL finish other projects I am working on, - and start others. And pain or no pain, years down the road perhaps.... I WILL dance at my daughters wedding. It’s just that it may take me a little longer to do some of those things than I once thought."

Your Friend...Scott Hancock

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