Wednesday, April 26, 2006

Who's got the button ?

It's been one of those weeks, the kind where I'd just like to crawl under the sheets and forget there's a world out there--including friends and family! It's not that my friends and family are bad guys, they're not. It's because I feel absolutely horrible and feel like putting out one big ARGH and say, "BUG OFF!".

But I'm too nice for that .

It began a few days ago when I greeting the morning - ok so it was very late morning - sun, the blooms of spring with a smile and immediately got a horrid pain in my neck that sprang forth as a headache followed by weak knees, wobbling legs, a bit of dizziness and that very unsettling feeling in stomach that warns you something might just come up. Ugh! The suddeness of this development may have explained why I also found my heart racing a bit. I felt sick! And here for those two minutes after I got up before my brain had checked in to see how my body was doing today, I thought it just might be a better day. Ugh!

All day long I had that headache and other symptoms though some of them abated a bit as the day wore on. They continued for the next few days as well, which is why you haven't heard from me until now. I've been overwhelmingly wiped out flat tired. (Ya I'm still feeling yuckola but my fingers can hit keys a tiny bit more accurately tonight). This sent my brain doing it's usual mental exercise for such occasions - "Have I been around anything?". "Has someone sprayed something - it is spring afterall." "could it be pollens?" , "allergies?" ... "has anyone near me had the flu???" "or have I developed some new horribly bad condition like brain clots or terminal wry neck syndrome?" I never can quite figure these things out. But I did recall a few days earlier waking up with a very badly kinked neck ---- I settled on best guess it's "a bug" based on the unusual stomach-intestinal factors.

So what's this got to do with family and friends, huh? Well ---- As I wrote a while back I'd been reading about the guy who got a better from CFS and was planning to give some of his tips a shot. That was MY idea. Apparantly it is NOT most other folks notion of a good treatment regime ----

A bit of train-of-thought-interuptus ---- During this interum, that of my desired bed surfing, I found an article in my inbox about the new proclaimation from a recent CDC study. Tucked into several major newspapers, Washington Post, LA Times etc, was an article who's typical headline declaired something like "HEY ! THEY"RE NOT REALLY JUST MALINGERERS AFTERALL !". (take your pick - ) Most gave very slice and diced reports which boiled down to "CFS study of Wichita subjects by the CDC finds that some of their gene expression is goofed which makes stress more difficult to deal with", sort of thing. I had to read several articles before I came across one that gave enough details to figure out how many were tested and what the results were more specifically. I think that was the Washington Post article.

I can't say I celebrated. I can't even say I was very thrilled. They talked as if this was the first tangible evidence that we truely do have an illness that isn't just between our imaginations yet there's been many test outcomes that have shown that we're far from normal healthy since way back in the Incline Village epidemic times (mid 80's). I also suspected that most lay people who read these articles wouldn't understand that "stress" does not just mean unpleasant emotional situations but also refers to physical stressors and even exuberant times. It's not all about being unhappy. The other factor I figured may well be assumed is about the messed up genes. Most lay people think of genes and assume that means something you're born with - it's all your mother's fault. Only one article contained the word mutated.

Now perhaps I'm not a scientist but hey, how about some common sense? And common sense curiosity? Thus my questioning mind had this question - "How does this explain why four people all working in the same hospital lab becomes ill at the same time? And another four all working in the same office become ill at the same time? And what about all those who lived around Incline Village? Thus I concluded that this one question disposed of any notion that these genes were something you're born with necessarily -- more likely they're something you acquired - the mutations anyway. Where are toxins in this picture? And hmmm, since all the people in the test were from Wichita isn't it possible that they may all well have been exposed to the same 'thing' ? Seems there might be this one little missing factor in the equation....

So two days ago according to the media and the CDC it's now officail. I really am ill, physically ill.
Hmmm--- yup especailly these last several days when I've been flattened and yuckie I can confidentally say I am sick and point folks to the news. Somehow this did nothing for my plight.

The problem with this whole routine is figuring out how to get across to people that I do not need encouraged to 'get up and out'. Exercise will not cure me. It might even kill me. I don't need prodding and pushing, nudging or coercing to get out of bed. What I need is some energy and absence of symptoms. What I need right now, this minute is rest. R-E-S-T rest. I don't need reminded how the dishes are stacking up and the kid is running out of clean looking laundry. I don't need voice alarms telling me how long I've been in bed and how the days are ticking by. I don't wish to be conjoled into a more positive attitude, trying the latest and greatest wonder drug nor do I need a heaping dose of guilt. What I need is rest. R-E-S-T rest as in 'leave me alone!'.

I'm glad I read the article by the guy who improved his CFS condition. It's gotten me to think more about the benefits of resting from a treatment angle instead of just a "no choice I gotta lay here" angle. That guy tripped a button in my head which said "hmm--- sounds like a good logical idea! R&R, give my body some time to heal itself a bit".

The real question I guess is, "Who's got my button?" !

Sunday, April 23, 2006

Not quite a time machine but a traveling machine?

Hey! I got to go to the Grand Ol' Oprey the other night and hear Roy Clark! Those of us who are stuck here at home have to get out sometime huh? And what a better way to travel than this ---- my dear brother happened to be in Nashville and happened to be at the Oprey. He called me up when Roy Clark was playing and let me hear one tune. He thought I'd like to be at the Oprey and this was one way of going :)

On another occaision my sister called me from a Cardinals game and let me hear the crowd roar as they scored. On other occaisions my dear family would video tape events I couldn't go to like school functions my children were in.

Sometimes you just gotta get out of the house and what better way to do it than to have some helpful travel coordinators with cell phones! I wonder sometimes if people realize just how much those of us who are homebound need this sort of thing on occaision? Too often it seems most people assume I LIKE being homebound or that I must have agoraphobia (I can sure see how one could develop it if you became ill every time you tried going anywhere! conditioned response) and don't realize that the reason I seem content with this lifestyle is because I need to be content in order to stay happy and sane.

Recently I posted about seeing the part of the glass that was still full and being willing to adapt your life around your illness. I'm still so surprised to run into folks who figure that is just 'giving up'. Would a diabetic who avoids sugars being tagged as "giving up" I wonder???

So I've adapted my traveling and vacations a bit now. I have them from home. The cell phone travels are great and I'm thinking that perhaps adding some post cards and digital pix from friends and family, hey I could go a lot of places by proxy huh? : ) Sometimes dear husband and I watch a travelogue on tv and there we are, in Ireland or watch a show like the one on the Amazon. Next on my 'great ideas to try' list is planning ahead a bit and touring via TV with accompanying cultural foods from whereever it is we decide to 'go'.

Have you been on a trip lately??


Sunday, April 16, 2006

Happy Easter!

I woke up this morning realizing that it is Easter Sunday and this year we have no plans for a special dinner, no youngster to dispense chocolate bunnies to, nor lilies to view. Dispite the lack of the trappings of the day that we so often mistakenly think of this day the one thing that always resides is memories to reflect back on. Those days of long ago when mom made us girls Easter bonnets (yes they did wear those back when), when we'd all go to church and hear those Easter hymns...

"I know that my Redeemer lives ! What comfort this sweet sentence gives..." The tune has been on my mind since last night ...

How ironic perhaps, that those words that everyone associates with Easter Sunday, the resurection of Our Lord and Savior and rejoicing the victory from bondage always makes me think about Job.

I think many of us who are this ill identify with Job. Poor Job. He watched everything he had be ripped away from him. This children, his material things... all but his nagging wife. What we think about most however is how he lost his health and sat suffering with terrible boils.

It wasn't enough that Job was in agony from pain and suffering. Instead of comfort and encouragement his wife keep coaching him to curse God and die, get it over with. I can't help but wonder if she was an ancestor of Kavorkian or Shavio, those who figure it's better to pull the plug or deny nourishment than to leave it in God's hands. How many have told us they hate seeing us suffer so... or more abstractly hating seeing the ambiguous sufferers out there adding that it would be better to put them out of their misery? As if life itself isn't important enough, only perfection and 'happiness' is.

We also identify with having Job's friends, you know the ones that come along and ask you an assortment of questions thinking they're 'helping' you? "Haven't you seen a Dr yet? Surely he would fix you up if only you'd ---". "Are you following your Dr.'s instructions properly?" "Are you eating right? Sleeping right? Living right? blah blah" Or having some other philosophy they're sure is right like "You're depressed! If you'd just ___" or "You gotta have a positive attitude". "Just ignore it! You focus on the symptoms too much." "You'll never get better until you (fill in the blank) _____ -start doing something, get out of the house more, do some gardening, make new friends, see yourself as well, blah blah". And then there are those who scold you for whining as if you're making too much out of it. And so on. Job's friends offered all kinds of advice, all of it wrong. They prodded and pushed him, coaxed him and scolded him. We all seem to have friends like Job's.

And so we sit here feeling a lot like old Job. Most of our friends don't understand and some family members don't have a clue. They all have this goal of getting us well but too often it's as much that they don't want to see our lives dominated by illness rather than actually stopping to ponder what it must be like to live with these DD's (dumb diseases). They mean well - some of them, but they're not much help. Sometimes they're a detriment. Sometimes a major pain --that straw that broke the camel's back.

Job had all those friends too. But one day another fella came along with a different message. He said "Who are you?" "Did you make the mountains? The whales? The sunsets?...." And so he sets out demonstrating the magnificence of the Lord.

I wonder if Job's world had become like ours? We've rating by how tall our pile of wealth is, how much we own. We've valued by our title, and not really by who we are. We judge by extent of happiness, which we define as how much fun we have, how much we entertain and are entertained. We have so many things that we have come to define as 'life" and "living". Is it any wonder then that some would think that a life without those things would not be a life worth living? When we use that cup to measure our life we always focus on how empty it is, not by how full it is.

You see Satan had come along and complained to the Lord that he couldn't touch Job because God had surrounded him with a hedge of protection and foolish Satan must have figured that part of that thing that kept him from getting Job to turn from the Lord was those things Job was blessed with, his wealth, his relationships and his health. So he stripped all those things away from Job. Yet Job didn't curse God...

Job did complain. He whined. He cried. He sought shoulders of comfort, ears of wife and friends just like we do. But these friends of his, they remind me of how easily we all get caught up in defining life with everything but what matters, our relationship with the Lord. Who God is.
What is a man's life? What is his value? Is it how many degrees he gets? Is it how much money he makes? How big a house he owns? Is it how good he looks? And even more pointedly, is it how perfect or stressless it is? We've come to believe that life shouldn't have any problems. We should never be depressed or unhappy. We shouldn't have struggles or hassles. Afterall man, using his mind and knowledge should be able to solve everything and avoid the pitfalls. If you don't think we've come to think this way look at our children and think about what things we all thought was normal life in our childhoods that they now can't fathom how to live with. We think we can legislate and regulate everything to protect everyone from everything from accidental injuries from sharp edged toys to spilling hot coffee in their lap while driving! We can't allow any boo-boos! And we surely don't want to have any owies. Grab the bottle of _____ , that will take away all your pain. Now it's psychotropic drugs that is suppose to fix us all. We'll never feel sad again!

But alas that is not life. As I tell my daughter, "God never promised you a rose garden, especially not one without thorns!". Having lost and mourned my mother how much more can I rejoice the birth of a new grandbaby? Having known the depths of misery how much more do I appreciate absence of pain? These are all "life" and "living" and yes, indeed, normal. Many times these days I think society has come to expect too much and because of that we are so disappointed when it's not all perfect. Not only do we expect it for ourselves we also expect it of others. The news is full of woes these days. It seems to be increasing. Ironically at the very same time we keep setting the bar of expectation even higher. No one should ever be hungry. No one should ever be poor. Everyone should own a ----, everyone is entitled, has 'rights' ... We all "deserve" blah blah...

Job had nothing left ... except his wife and a collection of 'friends' and one young wise man who pointed out something that lead Job to say ---:

"I know that my Redeemer lives!"

It may be bad with my physical body, but how is my soul? Can we say "It is well with my soul" in the midst of not being so well in body ? Can we step back and take another view of life and rethink our expectations and definitions of what is really important ? Can we stand firmly on our new found observations and conclusions having now, through terrible illness, discovered that yes indeed there truly are other things besides all those things we can no longer do that are still very valuable, worthy and important? (most with DD's do come to realize that so much of what we believed was so crucial to us really wasn't but things we took for granted like friendships and family, appreciation of beautiful sunsets, simple things are. We are not our job, our money, our title etc.)

Oh I wish I had the words and time to go on because there is much on this subject that I wish I could convey! ...but it's difficult to put in few words here... especially without sounding trite or condemning or trivializing... So many difficulties plague us, weigh on us alongside the physical issues.

And here I sit on Easter Sunday without ham or turkey or bunny shaped cake with coconut hair and jellybean eyes. Without the obvious - ability to attend Easter services at a church, the biggest missing thing today. Without laughing children with chocolate clown mouths. Without any visible indication that today is a day different than any other day this year... But in my heart a melody plays "Jesus Christ is risen today, Allelujah!" and "I know that my redeemer lives! What comfort that sweet sentence gives" because my comfort, my contentment can not come from a painless body, an easy life with no stress.

When I look around at the world today and see all the troubles brewing, the attack on families and liberty, threats of pandemics and wars and rumors of war and contemplate the devastation of hurricanes and earthquakes; I think about how much we still do have compared to how bad it could be and I wonder how society would handle more tribulation with our expectations. Will we be angry? Will we protest and demand? Will we shrink up in a ball and give up? By what measuring cup will we measure?

I hurt. There's a lot of things I can no longer do. I'm pretty much homebound. I have a lot of symptoms and no energy. I could make a long list of my woes that may cause you to think my glass is almost empty but oh how wonderful is the part that is filled! Some of my acquaintances are like Job's, but some friends and family are worth more than their weight in gold. That is only part of the contents of my glass ---

Today we celebrate finding that grave empty. He is risen! He is alive! Though the things of this world may confound us and weigh upon us we have a Lord who knows our sorrows, has felt our pain and who has sent a Comforter. One day all the things of this world will pass away. Things we thought mattered much. But even in that day we will say, "I know that my Redeemer lives! and nothing in this world can separate us from the love of the Lord."

In the end Job had double what he had in the beginning...but even more importantly, he understood that his happiness, security and salvation was not in those things but in the Lord.

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!


Alouicious MacDoogle ??

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Zona the hermit writer

Hey, Who's In Charge Here Anyway - Part 1

A few weeks ago there was a post on Co-Cure that linked to this site It's about a guy who'd read about another guy who had recovered from CFS and decided to try some of the same things. Guy number 2 did get better. As you would probably have guessed after 26 yrs. of illness I'm not holding out much hope for cure, but hey, even being able to get a bit better would be an improvement huh? And so I read through the site and have been pondering ever since.

Mr. Campbell begins by pointing that he only had a moderate case of CFS and had no other conditions, ie no MCS, no FMS and that he had none of the typical stressers the majority of us have, ie kids, financial problems, spouse. And he wisely counsels that what worked for him won't work for everyone. Smart man. We won't throw any rotten bananas his direction.

I did find a few things on the site which echoed in my head because they were things I had noted myself and had been mulling over already.. and hey, they sounded sane! The first point was that he accepted the fact that he was ill. Now that may sound like a "no duh" thing to some of you but it really is something most of us deal with. Most of us were fairly healthy before this beast struck and took us down rather quickly. But because the symptoms are so strange yet so common in ways (sore throats, swollen glands, flu like symptoms and fatigue) everyone expects it to 'go away' fairly soon, after all those sorts of things just don't last forever, right?! Even mono comes to an end... well, usually...

And so in accepting the fact that one truly IS ill, has a real and not imaginary illness and one that is not known to go away with any magic pill or treatment we SHOULD stop pushing ourselves to 'carry on as usual' - keep pushing to accomplish the things we've always done with ease... like working 50 hrs a week while raising 3 kids and keeping house and paying bills and entertaining friends and keeping hubby happy. No indeedie! Sick people don't do all that... well, unless they have one of these UFO type illnesses - meaning those that the public at large believe is as probable as being abducted by an alien mothership. Sick people take care of themselves. They pamper themselves a bit. They address their symptoms best they can AND they rest! Oh that guilt inducing word, rest!

You ask anyone who has CFS if they lay in bed during the day and you'll probably get punched in the nose. The reason is that question is typically an accusation. They also will respond with the old "no duh! it isn't called chronic FATIGUE syndrome for nothing!" reaction and then continue to try to explain to you in our limited English vocabulary that the fatigue of CFS is NOTHING like the fatigue you think you have after a day's work! It's not like the fatigue you have after too many nights of little sleep. It's closer to, yet not quite the same as the fatigue you get when you have the full fledged influenza type flu NOT 'the flu'. And so myself like every other PWC will admit that yes indeed we do lay down during the day. How much depends on the day.

But Bruce Campbell suggests that merely laying down when you're already wiped out won't cut it. He suggests that we need to treat our bodies like any other person with any other type of illness would by allowing our bodies the rest it needs to heal... like resting BEFORE you're wiped out. Regularly resting. Planned rests. Not laying there on laptop typing away for hours while talking on the phone and watching Independence Day at the same time kind of rest. But peaceful, eye's closed, brain quieted, body resting type of rest - restorative rest.

Now it occurred to me that I get little of that. Ya, I lay down a lot. Heck for the last year and a half I've been practically living in my bed. ... But I haven't really been resting. I've been collapsed. Wiped out. Whipped. Exhausted. (oh how limited the English dictionary is!). But the whole time I've been fussing about what I didn't get done that day. Stewing over the mounting bills and things wearing out. Wondering if my daughter would forget what I looked like if i failed to help her out every five minutes or if my husband would assume I was molting. Nope, that hasn't been rest. It's been work.

In retrospect I've done very little resting in all the years I've been ill though I have spent a good deal of time laying down.

This all made sense to me. I've had some very bad spells in the past followed by better times. I have to remind myself of that fact when I'm feeling low. It gets me through the valleys of this illness. I will admit however, that this last year and a half brought amnesia. I could barely recall having any 'better days' since I became ill. It seemed like one very long wasteland of life that was on the downhill slide with little hint that things would level off again let alone improve. Nothing I did seemed to matter much. During this time I noticed that the less I could do the more I felt pushed to DO something. DO DO DO ! It's surprising how many times we need to be reminded that we ARE ill and accept that fact instead of continuing to think we must do what everyone else out there is doing - or rather what we think they are doing.

REST. Yup, I need some of that.