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?" !


Blogger Unwilling Participant said...

Hello, I've had CEBV for 2 1/2 years and I enjoyed reading your blog. I had an experience with a psychiatrist who kept trying to pin me as being depressed. Your doctor said it exactly right - anyone who had to feel like shit every single day would get fed up with life after a while.

My Primary care physician keeps trying to push antidepressants on me. I've taken them a few times and always felt much much worse.

That is lazy medicine. Yeah, we're not in the best mood all the time, but get to the root of the problem!

1:10 AM  
Blogger Zona said...

Yup ...unfortunately we hear this waaay too often.

Glad you enjoy the blog. Guess I should get with it and post a new one LOL. Not been a great health week here tho...


1:50 PM  

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