In my wheelchair in Amsterdam, I never noticed the awful color of my lips, my hubby's signal as to how I'm doing!
How long exactly, does it take to recognize and realize that one is sick? And I mean truly, life-altering sick, not just getting laid up in bed every now and again?
It's been well over 35 years that I've been ill. Unfortunately, I suppose it wouldn't be too much of an exaggeration to say that somehow I am pretty slow in the understanding of consequences with this illness. Somehow I keep thinking that tomorrow I will wake up and be back where I was in very early 1975, running around with my course work, teaching, dating, going to parties, planning my future as to whether I should get a PhD or go to law school, agonizing only about how I would leave so many really incredibly fantastic friends, ones who later proved to be worth much more than their weight in gold when I became so sick.
I can't seem to recognize the reality of my "life style," and yet my hubby and I could never count all the hospitalizations I've had over the years. Heck, there was one year alone that I spent more days in the hospital than I did at home. There hasn't been a year at all since 1975, I don't believe, without a good lengthy and serious hospitalization. I can't even remember the names of all the doctors I've been to nor the names of many of the medications I've been on and there have been times when I've been on 25-30 different meds at one time! And before anyone expires from seeing that number and thinking I've gone to quacks, let me assure you that I've seen the best except in those cases when I was told that I should save my money and energy because there is nothing that THAT particular specialist could recommend or improve upon! (HOW depressing is THAT???)
I am still on such a vast number of medications that literally half of my carry-on bag on the plane was filled with said medications, and that was with packing some of those plastic amber containers inside one another like little "Matryoshka" nesting dolls, the smaller ones inside larger ones, tripled up in quite a few instances in order to save space.
Oh, I knew I'd get sick, real sick, from the trip, but it was all so abstract until the time came to pay the piper. Somehow, I kept thinking, in the dark recesses of my mind, that surely I exaggerate my illness - though whether it's because I've been told so by society for so many decades, because early in life I learned that I can overcome anything I set my mind to do, whether it's out of sheer conditioning, or even stupidity, I'm not sure. Perhaps it's perverseness because my family is always giving each other looks when I come up with a great plan or because I just want to shock the hell out of everyone who's written me off, or perhaps it's because of my family's tendency to treat me alternatively with kid gloves or to dismiss my plans. Whatever it is, I still cannot believe that I am really and truly ill.
I also know that I spend entirely too much time very angry and disgusted with myself, wasting precious energy. After all, I look like everything I've always abhorred, the lazy person. Worse, I can't do the things I love to do. Just today I spent way too much time trying to analyze how I would wash a wall that is all mirrors and the only thing that made me realize how stupid the move would be was NOT because I came to my senses but because I realized that the painter who took down the wallpaper in the hall will need to plaster up and sand down some huge cracks and gouges, thus rendering cleaning of the glass wall a, well, extremely idiotic move! I spend too much time silently angry with my family as well, feeling as if they cramp my style, especially when they point out the signs that indicate that I'm not doing well. I hate that they just might be, or are, right.
And, of course, they're right - that's what makes it all so frustrating and truly maddening! When ever-annoying hubby tells/begs me to stay in bed and not do anything, there is a perverse part of me that wants to rebel. I HATE being told what to do, so hubby tries not to "warn" me, but some days I suppose the temptation is too strong and he goes against his best instincts. I mean, I really hate any limitations. Looking at a profile of what someone described me as on Classmates.com, I was delighted to see the main characterization as "gutsy." I'm quite proud of that description! I was a tomboy who actually jumped off one-story buildings quite frequently and would get so disgusted with my poor younger brother because he objected! (What a killjoy! Hummm...he also didn't want to shallow-dive off a fishing pier where I then was almost paralyzed from a misjudgment in how deep the water was - only inches - again, what a killjoy!)
But as disgusted as I become with the "guidance limitations," I must admit that this week I've almost passed out dozens of times, quickly grabbing hold of any near-by furniture, or a wall, as I see stars, then blackness, my head spins, my legs start to melt, I feel my blood pressure dropping and I break out in a sweat, getting all clammy. It's very annoying because I would really like to unpack my bags. This is usually a two-year project - REALLY - and I gave myself a two-week deadline this time.
And we SHALL see. I am, after all, on a self-improvement quest this year. I've had it with doctors at the moment and am determined to live life MY way this year and darn the consequences. I want liberation! I crave liberation and darn it, I deserve liberation. I'm so tired of counting and analyzing each step I take and though I do want to do a lot of the things that do help me, I'm mighty tired of marching too often to other peoples' drums, especially since I've practically pioneered this darn illness. Few know the poop that's coming down the pike for them because so much of it IS so phantasmagoric. Oh, I can just hear shrinks galore saying things like "delusions of grandeur" to the other side of the darn spectrum, "she's sooo in denial" to everything in between. It's rather scary putting your thoughts out there because there are so many "shrink" type people who will just love to analyze what we write in our posts when they have little more to do than clean out their bellybuttons on listless weekends.
And yet I look at those coming down with CFIDS/ME/fibro and its myriad of complications, especially the young "kids" in high school and/or university, and want to scream at the top of my lungs and shake some sense into them and say, "look at me and do NOT do what I did! Take a page out of my book. Do you really want to end up like me???"
How I wish I could shake sense into them! If I could, here are some points I'd like to make:
1. Do not overdo at all. This is a cardinal rule.
If you are in school, do not force yourself to go to classes and finish your degree(s) "on time" or even early. I do not know what my rush was all about other than I had tunnel vision, school cost money I didn't have, so I took too many courses each semester in order to finish early. One Vietnamese accupressurist who did some of the most gifted work I've ever witnessed and experienced made an interesting observation about six months after seeing me weekly, a man of VERY few words: "I never meet someone so dead who still alive." Did I mention that he spent approximately six years in a Vietcong prison under some of the worst conditions imaginable? (I only know this because people like to tell me things and I'd be asked, what did so-and-so tell you today? I heard him TALKING to you through the wall!") He also pointed out that I was never able to do much with the degrees that I'd earned, due to my illness. I sort of screwed myself big time, in ordinary parlance!
2. Today we KNOW that the best way to beat this nastiness is through rest, pacing, lessening the stress load, etc., but the more you do during this "window of opportunity," the less the chance of overcoming this nastiness. This is tough love talking here, reality!
Unfortunately, the longer you go sick, the harder it is to overcome this illness and that's why it needs to be nipped in the bud. When Ampligen first came out, there was a reason for the five-year cut-off date. It's believed that once you've had the illness too long and too severely, you're dead meat, so to speak. My analogy, though a bit flawed, but enough to give you the idea of what I mean, is that I am the patient who got polio before the vaccine. No amount of help cured the polio victim. But though we still don't have an ME vaccine, we do know that with proper rest, for as long as it takes, CAN work to get you back to pretty much normal. I've seen it happen: not often, but in the cases I've seen, the attitude was the very opposite of mine: total dedication to selfish resting, no helping anyone, no exertion of any kind, total devotion to self and determination to getting better and screw anyone else out there. It's not easy and at the time it took a lot of selfishness because NO ONE was advising the amount of rest and relaxation really needed and the amount of devotion to it.
3. Tiny CFIDS/ME factoid: I also found it interesting that the further you get from the equator, the higher the incidence of CFIDS/ME/fibromyalgia. To me, this reinforces the "overdoing" concept.
I was shocked the first time I heard this, in a jewelry shop in Amsterdam, of all places, because the lady waiting on us asked about my "condition," since I was in a wheelchair and the shop WAS teeny tiny, to put it mildly. The first part of the surprise was that she knew as soon as she saw me that I had ME. Her sister had it too, quite a bad case of it at that. I find it amazing how often we in the CFIDS/ME/CFS and fibro community can recognize one another. I'm convinced that we must give off some sort of signals, looks or even ME pheromones to those in the know! At any rate, hubby, who's quite a bit more in tune with these things than I've been at times, had quite the discussion with the woman and I learned so much that day. To be frank, at first I thought the woman was a bit nuts but hubby assured me that this was indeed one very much-discussed consideration at the time. There is a theory that the colder climates make for less rest than in warmer one. That is, living in colder climates produces more Type A personalities because in hot climates it's believed that the heat zaps one of the energy to overdo. Interesting. I also think that was the day that made me realize it was indeed OK to use a wheelchair if I needed it. I finally made peace with it, not feeling quite as much the fraud, the person begging for attention, all because I got validation from someone in the oddest of places and circumstances.
But what I haven't made peace with is KNOWING just how sick I'll be from anything I do... I just have no radar for it and certainly no tolerance for it. I suppose it just goes to show us how much our youngest years influence our lives and then how much society influences that "baggage," be it good or bad.
And so, I doubt that I'll ever truly come to believe that I'm really sick. I'll play-stop to a certain degree to make my family happy or to stop them from saying the same message in a thousand different ways, "but mom! You knew what would happen!"
Ah, but do I really? I think not. Had I known I'd be this sick from flying to Malaysia would I have done it? Well, I didn't believe I'd get THIS sick (after all, it's been six months since my last hospitalizations - I was on a good roll! ha!) but yes, you can bet your sweet bippie I would have gone anyway! Because really, I have a hard time believing that when all is said and done, I have anything truly more seriously wrong with me than a weak will.