Acceptance is Key, like I've said so many times before

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.

Standing up ALONE!

It was a challenging day. Not a bad day, tho. I guess .. somewhere in the middle. I actually got the floor vacuumed and made it to the store to pick up a few listed items including prescriptions - now maybe their darned automated calling machine will stop calling my cell phone for a while! ; )

Don't get me wrong, I've had some very good days when I am up and out 'n about .. and that'as when I hear malicious people saying things behind my back like .. "she's NOT sick," or "there's NOthing wrong with her" - I rejoice!! I'm thankful to be having a GOOD day, and I don't care what they say!

It was more emotional and mental today. It all started with a post that I made in DEFENSE of those of us who really do have bad, bad days, you know, a day when it is so difficult to move .. even enough to just get a glass of water .. because every single tiny motion causes such pain. You know one of those days when you have to draw the blinds because even the light causes pain around your eyes .. then it shoots painfully through your head so badly that you have to shut them .. and go lay your aching body down.

A day when you are just so out-of-it that when you try to do ANYthing at all .. you just stumble and fall .. and hurt yourself even more. A day when you know you can't excerise because no matter what you do .. it HURTS!  You also know that IF YOU DO .. you will be punished for it so severely .. like your muscles will all catch on FIRE for days, even weeks. (Just like so many were saying today on that fibro page today).  I remember when I used to fight it so hard that I would push myself to do things like that .. and then I would PAY for it. I would be in so much FIREY pain for days, even WEEKS .. that all I could do was just moan and cry, writhing on the sofa ... and I didn't even want to do that .. but I couldn't help it .. alone.

I was a size 8, career woman, single mom. I've knocked down over $100K/yr. I did not ask for this. Nor do I want it. And on my bad days, I don't need anyone telling me to get up and exercise! How?!? And Why on earth would I want to hurt myself like that?!?!  NO, it does NOT help!!  It just causes more & more pain. Then, they say, "Well why did you do that?" .. "You knew you were feeling .. blah, blah, blah".
Just visualize for a moment being 9 months pregnant and having someone tell you to get up and do 100 jumping jacks! You might do one .. or two, but you will immediately feel the tremendous stress on your body .. and how will you feel after even just 5 or 10?" .. but "c'mon, you can do it" .. yeah, right. They call that "HELPing"?!?!? Please!

I have pushed all right. I have pushed most of them right out of my life! And what a relief! They obviously have no thoughtful consideration for me. Stand up for what you believe. I believe in being compassionate to others and to myself. "Stand up for what you believe .. even if you must stand ALONE!"


MOMENTS BEFORE:
No, not even yoga could be gentle enough today!
You know what it is? It's somebody ... some idiot telling me to hurt myself! And on my bad days, I really don't need that. That's just not what I need to hear. And that's certainly not what I need to DO. And I certainly don't need any guilt trips from all their idiotic underlying accusations either.

Not everyday is a bad day. But on a very bad day .. I most certanily will NOT get up to exercise just to satisfy someone elses self-centered pleasure. I have good days, thank goodness, when I can get busy and get some things done .. maybe just a couple .. maybe a lot! And, by the way, good days are always welcome here! Usually I know what kinds of activites I can do on most days, but sometimes .. I do miscalculate my energy level .. and then I struggle, again. Sometimes I struggle with  the door, other times it is not nearly as heavy as it was the days before. That's just the way this Fibro is ..  I live with it.


I'm just coming to the DEFENSE of any fibro-mate having a bad day .. and to my own defense .. at last!.. because it seems that everybody likes to fight fbro .. and with the people who have it -- if not with their rude comments, then .. with their rude actions .. some won't even help with the door. When I know that I had better not exercise .. I don't.  And I don't let anyone else make me feel guilty about it. Their lack of considerate understanding is their flaw. After all this time, I have decided to treat myself so much better than that. Even if no one else really "gets it".

So Alone

For years now I have felt so alone on this Fibro Journey. At the beginning hardly anyone knew what I was talking about when I'd tell them I'm in pain. I'd say, "It feels like a big, strong muscle man has placed both hands around me and is sqeezing as hard as he can". Or, "I feel like I've been run over by a truck".  I just felt so beaten and bruised all over. I've been searching online, in newspapers, everywhere, looking for others who might be feeling this way .. others who might be able to help me find the words that might best describe this to my loved ones. Now, I have finally found  places where other fibro people describe what it's like to have fibromyalgia. Sometimes, they sound so much like me. Yes, I am finally finding others who really know what I am going through. And I don't feel so alone anymore.

I have created this blog to help others who have felt so alone in their fibro journey. I will be posting some of the things I find, along with thoughts of my own. Let's keep this a warm-hearted place where we can share and express ourselves .. together. May the words of others help you in your efforts to relate what you are going through to your loved ones, to your medical care people, and to any others who are important in your lives. May you never feel so alone. ; )