Thursday, April 06, 2006

Hey, Who's In Charge Here Anyway - Part 2

I wrote part one as a prelude to this part - two. If you haven't read it then go do it now because you need to understand just where my head's been the last couple of weeks in order to really appreciate what I'm going to say next !

I have a headache again tonight. I usually do not get headaches but seems this is the month for them. Pollen season? I'm not sure, daughter is sick too - cold? or allergies? Argh. Besides the bone-tired fatigue I'd had for such a long time (it seemed like forever) I've also been having stomach/gut problems, reflux, backaches and an assortment of other symptoms.

[***I started writing this part two, the above paragraphs, days ago and just now getting around to complete it. I've had a lousy few days here as well as many interuptions and other things that demanded my attention... like helping clients fix their computers over the telephone. Yup, I fix computers amongst other 'from home' businesses. I have to. I don't get any form of disability, not that I'm not that ill but that I simple am not eligible for any. So I've been wiped out...drained, zapped and kaputzed. But meanwhile I've been pondering how to write this part two because there's a lot I want to say and you know me, I'm not real short on words! ***]

Who's in charge here anyway? You would think it would be me, huh? I wish. After I wrote that first part, which was after a couple of days of actually having a few good moments in the afternoon for the first time in over a year, I thought I'd take the opportunity to share my rejoicing over that fact with a few friends and family members. Maybe a big mistake! Of course, after over a quarter of a century with MCS and CFS as my constant companions, I knew that the improvement wouldn't be permanent, but hey, we grab on to those moments when once again we feel hopeful, feel excited and jubilent having a few hours of no pain and less fatigue. I also had been feeling rather, hmm... well, like I had turned into a whiner and complainer and probably was a real drag to listen to during this last year of great travail and suffering. And so I thought for once I had an opportunity to say I felt better. So I did. I told everyone who would listen as well as posting it to a few lists I'm on. I was elated! (and I so needed a change!)

Needless to say it didn't take too many minutes for that crushing fatigue to sweep in again and knock me right off my feet. I'd over done it. During those minutes those two afternoons I'd done the stupid thing of trying to catch up on a year's chores I was behind on. All right, I'll admit it, I did the dishes, swept the kitchen floor and mopped, quickly top cleaned the bathroom and vaccummed the livingroom but hey, to me that was more work in one day than I'd been able to do in many years even if it doesn't seem like much to you. Prior to that I would stack the dishwasher and go lay down before I fell down. Vaccuum part of the floor and then have to stop etc. Housework sure does pile up a lot that way you know ? . So ya, like someone who can never grasp getting smarts no matter how many times I paid the consequences, I had done it again -- over done it. Obviously no one stopped me either. Hmmm...

So there I was sacked out in bed wondering if I had enough energy to breath with, wondering why I'd done such a stupid thing especially after having read that article that had emphasized pacing and resting even when feeling better. It was one of those 'duh me' moments or rather "oy vey!" perhaps ? But it was worse than that even....

I felt so bad AND sooooo discouraged! All the momentum I'd gained from those few minutes of 'betterment' towards hope and encouragement was zapped in a flash - crash! I wanted to pout and I reaaaally wanted a shoulder to pout on. I wanted consoling and someone to understand and share just how bummering that was. But alas! I had just announced my glee and ... Ok I'd better stop right here and insert that missing part of the story ?? ---

It didn't take terribly long after reporting my minutes of betterment before i began recieving psychotherapy. A couple people informed me that it was about time I felt better. Some said they were so happy to hear how I'd changed my attitude. Others told me that I had been focusing on my symptoms too much. And still others implied that now that I'd started thinking more positive I would be healed. Everyone seemed to assume that this meant I was finally better -- as if it were a permanent thing. Some family members thought it was about time I had done SOMETHING. It seemed everyone seemed to think it was high time I stopped being ill. And some of this came from other people who are also ill.... Some meant well, others just wanted to dump whatever burden they thought I had been to them... I began to regret that I had said anything to anyone.

It stunned my how quickly it seemed that how well or not I was doing, seemed to be more about other people than about me. It seemed as if illness was like a volleyball that you could just bat away if only you wanted to-- as if to have symptoms and feel lousy was somehow something one chose to have. And as most of us have complained about, as if all chronic illnesses must be more mental and attitude rather than real physical, or at least as if they are controlled by emotional outlook. Hmmm.

At first glance that may lead one to assume that the bottom line is that others think WE are in control of our illnesses, as if we possess some sort of switch that we can just flip on and off at will controlled by our thinking. Oh to have such control huh? But after second thought it becomes more apparant that it is really that THEY want to control our illness or at least to control how we deal with our illness, in particular how it affects THEM. Yet even that is not an accurate statement. Underlying the whole thing is that somehow we, society at large, have come to unconsciously believe that anyone who has lost their physical health to a major condition also has lost the ability to make wise decisions about what to do about their bodies. We somehow believe that only the Whizard of Medical Oz knows what we mere mortals can't begin to grasp. We think that only those with initals after their name possess the knowledge and skill to guide our minds to the correct treatment and/or therapy course "for our own good". And those who are degreed in the tinkering of the mind to explain to us what proper thinking is. Even Oprah knows more than we do ! She's a celebraty at least. We are mere ailing mortals devoid of the wings we once could fly with.

It was some decades ago when I noticed there was this mass concious thought that said "your can't trust your mind, it can lie to you"... and we all heard that "I'm O.K. - You're Ok too". Now apparantly we can't trust our bodies either. It lies too. We surely can't follow our instincts in what our minds and bodies need. They lie. Only "THEY" know what's real (true).

What's my bottomline? Well, I'll tell you. I choose to believe that I know what is best for my mind and body and I know what course of treatment I will follow. It will be MY decision because I am in control of my own life, thank you. ---

---and if you don't believe that now then I ask you, how on earth will we be allowed to control our own lives when we are elderly yet too? Will we agree that you loose your reason as you age? That somehow getting old means you need to be treated like a toddler and have all the decisions made for you --- even the decision on when you've lived long enough? Afterall haven't we all begun to buy into this notion of "quality of life" being the upmost point to base medical decisions on???

Pray. Pray real hard!



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