I've been reading a lot of posts from people who are in a lot of pain right now. Fall does that to fibro people. It is especially difficult when people are still trying to live their old lives. The frustration of not being able to do things like you could before fibro causes so much frustration. And frustration leads to more anxiety. And more anxiety leads to more stress .. and more PAIN.
In their posts, they are angry. Angry at their spouses for not understnading how this changes them. Upset because their children do not understand. Families can be so demanding. But mostly angry at themselves for not being able to get up and do all things like once did. In the midst of trying to keep all the repsonsibilities in tact, we have flares. Our bodies just burn out. The more we push ourselves, the less energy we get .. and less and less.
When you have fibromyalgia, your body demands extra rest. In 2000, I said, "I'm sick and tired of being sick and tired". But there was nothing that I could do about it. Doctors just nodded. I had already been reading and browsing through every book I could find on the subject since '95, and there wasn't much. That's when I first heard of Fibromyalgia and finally, after 3 agonizing years, realized that just might be what I have. I wasn't diagnosed for about two more years after that. Mostof the time I didn't have insurance and most doctors back them didn't seem to know much about fibro back then. I'd been dealing with severe break-downs, melt-downs, flares .. whatever you want to call them since 1993. When I was just too weak to get up most days for months. That certainly was NOT like me. I knew something was wrong, but I had no idea WHAT. I was alone raising my youngest daughter .. and she was only in the 5th grade.
The most stessful and scariest part of fibro were the years of now knowing WHAT in the WORLD was HAPPENING! I was dashign through O'Hare Int'l Airport in Chicago, when I felt like I was trying to wade through water. My purse seemed unusually heavy .. like it was breaking my shoulder and my energy felt so weakend. I remember wondering to myself, "Why am I feeling this way? I got enough sleep last night." I'd noticed it a few times before, too. I felt so painful that I stopped to buy a small luggage carrier with wheels just so I could put my purse on it. What a site! There I went, in my high heels and business suit, through the various concourses strolling nothing but my purse behind me!
Most people who have had fibro for several years know that, unlike cancer, alzheimers, or diabetes, we are truly ON our OWN! It has just been recently that internet blogs, and pages have sprung up .. and more awareness is being created (thankfully). But we are STILL very much ON our OWN because there is no cure .. hardly any research .. and a big lack of awareness among our communities.
During those years, I have become very skeptical, of course, because there are so many people out there who will take advantage of people in fibro fog or chronic pain in every way possible. So, it is rare when I find something that I think is worth recommending. Today I listened to a one hour lecture by a research Dr at Stanford University: Dr Sean Mackey, MD, PhD and it was so wonderful to hear about his research. Finally, after all these years, someone who really makes sense. The link is on uTube.com (I'll post it next time). While reading and doing my own research .. about whatever it was that might be happening to me .. I came to the conclusion that it was was definitely something related the Central Nervous System (CNS). Since (1997) I've told my doctors that it until researchers start looking at it from that perspective, there will never be much done about it. They were kind enough not to tell me there weren't many researchers, if any, working on fibromyalgia.
I began in 1994 by reading books and experimenting with dietary changes hoping to find something as simple as a serotonin shortage .. anything so that I might be able to just "take something" and "fix" it. I was still working very hard in my career and pushing myself to live like I had been before. And it was getting more and more difficult. The most difficult part was trying to get others to understand. Because one day I ws wiped out .. and then, the next day I might be fine, most people felt that I was making it all up. Most reactions to all of this were awful and disgustingly rude!
More and more, I had to realize that I was definitely ON my OWn with this. And I couldn't get rid of it no matter how hard I tried. It took many, many years, but I slowly began to just ACCEPT it. And I realized how doing just simple things in my day were changing. I was ADJUSTING in desperate efforts to find ways to cope with this. This acceptance has made big difference in my life with this debilitating disease.
So, when I read those heartbreaking posts: desperate pleas for help, I want to tell them so much. Just yesterday a new Fibro pal sent me a message asking, "You seem to be getting around okay, what's your secret?" I have no secrets, just different ways of doing things, different attitudes, and much less stress in my life now because that is what my body demands. I will share whatever I can with you. Two weeks ago, I decided that this is what I am going to make this blog about. In my next post, I will write about releasing some of the major stresses.
My intent and my hopes are that this may help others, too. I am not cured. There is NO CURE, and I hate it when people try to dupe us into thinking that there is. But I will be optimistic that someday there will be. Until then, may you learn to live daily with less-stress and less-pain.
