Wednesday, May 20, 2009
Lovely words but all they mean right now is that another day has gone by and I've slept through it. Oh, the overpowering fatigue. I wake up and all I want to do is close my eyes and go back to dreamland.
I hate this.
I've read that people with chronic fatigue and/or fibromyalgia have low dopamine levels. There are drugs that can help this but there are also foods that will help adjust these levels. It's worth a try rather than trying to injest more crap into our system. Green tea, apples, chicken, cheese, beets and fish can help raise these levels. The one good thing is that red wine can also raise dopamine levels. Well, there's a bright star in this black sky! Bring it on!
Of course, if you're on any pain medication of any kind you can zip-e-dee-doo-dah the red wine. That can't happen. Ok, then back to the overpowering fatigue.
People just don't get it. You need to get up and start moving. You'd feel better if you got out of bed. You need to start using your brain. You need to exercise. You just need to get up. Come on you can't hurt that bad. Gee, I get tired too. Blah. Blah Blah. Don't they realize that's exactly what I do want? I would love to wake up refreshed and ready to face the day instead of feeling like I'm looking at the world through the fog. Tired? This isn't the kind of tired that you feel after a long day at work. This tired is sheer unadulterated all consuming fatigue and you feel that way from the minute you wake up.
Fog seems to be the right word. Your physical body moves slowly through the fog. Your mental capacity seems diminished and your thinking processes? Yep. Fog again. It's almost an out of body experience only you wish it was someone elses body. What was the trigger to make you feel like you are constantly in slow motion?
Couple that slow motion existence with the harsh reality of pain. Only then does the magnitude of this come into focus. Everything hurts and you try to find words that can explain how you feel only the words that come to mind are the generic descriptive words that minimize this disease in other's eyes. How do you say "I'm so tired" without sounding like a whimpering little baby. How can you adequately describe how much every muscle in your body aches? Everyone has aches and pains but life goes on and you have the audacity to bring life to a halt because "your tired and your body hurts." It sounds ridiculous even to me.
For now I'll just have to leave the words as they are. My brain is too slow right now to use the thesaurus that I used to recall at will. I'm going to quit fighting right now and try to get some rest and maybe close my eyes and get some much sought after sleep. Maybe.
I have lived in a constant state of denial. It's where I feel the most comfortable. If you live there long enough you don't have to face the emotional state of your physical state. Does that make any sense? It could be the superwoman complex where you believe you can do all things, handle all things and leap tall buildings in a single bound. It could be the invincibility complex where you believe that your body must never turn on you. How dare it attack me?
In some respects; it's a good thing. That must mean that I'll never knuckle under to disease but it also places you in an almost paralytic state of indecision. When I feel like that truck not only hit me but backed up over and over again, do I get out of bed and fight it or stay there and let the fatigue wash over me and lull me into a state of unrefreshed sleep?
If it was just one thing going on......ok. I feel like the car was fine until the warranty expired and then everything starts to go out all at once. There's carpal tunnel, the back, the fibro.........I know in my head that it could be a lot worse. I've got friends who have had recurrences of cancer. They go through chemo, lose their hair and have side effects that make you so sick. They're sense of survival is so strong. They're in fight or flight mode and they're fighting. Maybe I just am feeling what everyone who doesn't have this feels. I look ok. I must not be that sick. After all, there are people with life threatening diseases out there.
I've been fortunate. I have not suffered the frustration of the endless parade of physicians that have no clue as to the cause of your pain and fatigue. I have been put with the right people at the right time. I've been pointed in the right direction because the people that I've been to recognize that my feelings are not normal FOR ME. They understand that when I say that I'm in pain and tired that I mean it. My concerns became their concerns. What wonderful people and I realize how lucky I am to have found them so early in this process.
For the people that go on this journey with us: be there. Don't try to talk me down from the ledge. Sometimes I'm going to go over. Sometimes I'm going to feel very sorry for myself. Sometimes I'm going to cry or be angry. Sometimes I'm going to feel that I did this to myself and sometimes I'm going to fight.
So for today, I must overcome my innate inertia and start to move. I have to take the covers from over my head and resolve to stand in an upright position.
I've never liked that word.
I've never liked it whether it be for mental challenges, food or speed limits.
You notice that physical challenges was not on that list. You'd probably never find it on any of my lists. I have to-do lists, shopping lists, what I want in a partner list, DVD lists, inventory lists and any other kind of list that you can think of but exercise or pushing beyond physical limits is just not there. I don't like it.
That's not to say that I used to have an ability to close my eyes and be able to talk my way out of pain. I started it when I'd get tickled by my brothers and in order to make them stop I'd have to act like it didn't affect me. I got the trick down pretty well and soon in morphed into a master over pain. It really worked for quite a while.
Obsessive-compulsive-immediate-gratification people should not be in car accidents or have anything go wrong with their physical body. They have enough wrong with their mindsets that physical impairment just serves to put them into a tailspin. It seems I've been a human target. I must have a bulls-eye on me somewhere that jumps out about every ten years and screams "hit me." Then someone will run a red light or plow into me when I'm at a dead stop. Thus began my introduction to my new friend: PAIN.
For awhile pain would only show up once a year or so just after I would do something very stupid, like bending over to brush my teeth or moving every piece of furniture in my house. Stupid and then welcome pain. I could live with that. Then pain decided it was going to morph into fatigue and hide for awhile just coming out long enough to let me know it was still there and then hide so I could function in the real world. Then came the onset of life changing events and a lovely little accident and I found out that pain wasn't hiding in fatigue it was hiding in stress. Only it wasn't hiding anymore.
Divorce and learning to function in a job world where you've never been involved. I went from leading a very privileged and very fun life to the realities of the real world. Career changes, job changes, relationship changes, financial changes and situation changes became a part of my life. I couldn't wave a magic wand and have it all go away. With every change, and the stress that goes with it, pain would surface and stay long after the change transitioned.
It has been playing hide and seek for years and it's taken it's toll. I must find a way to deal with my limitations that my body is placing on me rather than curling up in bed and ending up like Charlies grandparents in Willy Wonka. I mean, I rather like it. There's something to be said for everything in bed. Rather convenient to my way of thinking. However, I digress. This world and all it's pleasures are not best seen on the sidelines or seen vicariously through the television. Life is to be lived and savored and enjoyed and to allow pain to win is to live in a vacuum and I won't allow that.
I need to find a balance in my life so that limitation doesn't sound like a death knell. Limitation to an immediate gratification and control freak sounds ominous. I have to find a way to adjust my thinking so that life isn't pain or no pain; deal or no deal. Let's face it. There are people out there with a lot worse things going on in their life than fibromyalgia. I need to be able to count my blessings. It could truly be a lot worse. Pain tends to cloud your thinking so that you're immersed it all it's glory. It wants you to forget that your family, friends, loved ones, jobs, opportunities are all out there for the taking. It wants you to live in it's world and isolate you from everyone and everything else. It wants you to think that this is all there is. It's easy to go there.
For now, all I can do is try to find out what are my limitations and how best to deal with them. It will be a progression from the world of pain into the world of the living. One baby step at a time. One day at a time and sometimes one minute at a time.
I've become a lot more tolerant of my body. Lately it's been turning on me and I don't like it. I better listen because right now the body holds all the cards.
Years of being a type A personality has finally taken it's toll. I think it started early. One of my earliest memories is going berserk because my brother borrowed my records and didn't bring them back in alphabetical order. I also didn't like my food touching. Picky eaters will know what I'm talking about here. I liked my food colors together and "yucky" foods were not invited. I looked in horror as my brothers would mix potatoes and vegetables together or have meat and vegetables and sauce together on a fork. My mom would say "You've hardly touched your food," and being the smart ass that I am, would put my hands on the food and say, "there, I've touched it." She'd also say that there were starving people in China ( see how many years ago that was!) and I'd then give her directions on how to package the food and ship it to China. It continued through the years. Spices in alphabetical order, closets color coordinated, shoes placed by color, video tapes and DVDs in alphabetical order. I tried a home Dewey decimal system for my books and that didn't work so well so I just went to book height. I have what we like to call "my new obsessions." There are yip yaps, dental dots, blender balls and insta-snow. Everyone gets my obsessions for gifts or I just stock up on them myself. My dogs nearly keeled over from all the doggie breath mints I bought for them. I have no clue on how this started and I've relinquished some of the control but NOT NEARLY ENOUGH. Yep. A Control freak extraordinaire. As I look at the control portion you must also throw a immediate gratification freak into the mix as well. Does this give you the tiniest clue????
Well, lets get back to pain. Pain is truly a four letter word and I don't mean that in just the literal sense. I permeates your being and consumes your daily life. Just when you think you've gotten used to one level it spikes and hits you with something else or it will just jab you so you know that it will not go away gracefully. Pain sucks. I don't care whether it's physical, emotional or spiritual pain. Pain of any kind robs you of your life. It robs you of true joy. It's a nasty little reminder that your happiness can be taken away in one fell swoop. You have a good day and start to relax?? Wrong.
The medical community is like the picture. They have no idea what you're talking about. There are tests galore to rule out conditions but not one to rule this one in. Fibromyalgia. The mysterious and anonymous disease that makes you feel like you're crazy. It's the oh-you're-in-pain-and-tired-but-you-don't-look-sick-so-just-move-around-and-it-will-get-better-disease. It's the disease that people think you use as a crutch to get out of the things you really didn't have the strength to go to anyway. It's the disease that helps pain and fatigue in their mission to incapacitate you. It's also the disease that enables doctors to tell you they have the answers but don't take insurance so you're on your own and the cost will be pretty high.
So, after hearing the cost, I'm on a mission. I will be finding out all I can about my mystery ailment and using myself as a lab rat. I'll try vitamins and diet and yoga and anything I can do to see if I can get rid of the pain and how to relieve stress to help the flare ups. I will find out anything I can that will help ease the pain.
Let's start with the drug the FDA released to help with the symptoms of Fibromyalgia.Lyrica. What a comforting musical name. First of all it's not only for Fibro symptoms, so lets get that one out first and foremost. It's for seizure disorders as well. It's for neuropathy too. The FDA didn't approve it solely for Fibromyalgia but that's what the commercials tell you. I love how they show that you can get on with your life but start talking real fast about the side effects. My eyes, of course, went to the weight gain blurb real quick. Right now, I could be in pain but hell will freeze over before I take something that will put even more weight on me that the years of inactivity have done. Cymbalta is also approved for this and one of the side effects is weight loss. Why can't we try that one first? Savella was also approved but how do you balance the pain with all the side effects these drugs have? Savella and Lyrica have about the same side effects. I don't get it. We could all have three heads but hey.........we're out of pain. Obviously, this isn't going to work.
So now I'm researching. I have a new obsession to deal with but at least it's a healthy one. At least it's one that will help me get well or, at the very least, get managed. Here we go.