Tuesday, September 26, 2006

Knock Out Smell ?

Well i didn't really think it was possible but today i've been even more flat out fatigued (as in weak exhausted from cfs) than i was yesterday. Didn't get that room finished... ah well another day...

...it could have been made worse by gum. Yup gum. My daughter was chewing some of the stinkiest gum... yuck and it caused a sore throat and felt it in my lungs. I think it was that same green apple smell that some shampoos have which also bother me... and dh. I sure wonder what chemical they use to make that smell because it sure is potent!

Thursday, September 21, 2006

Smoke Cleared Now Why Won't My Brain?

Stopping in just to tell you that the smoke is finally gone. Thank God! But it seems it took my brain and energy with it for I haven't had any in weeks (did I ever? no!).

I'm dreaming of all the things I had hoped to do this summer that I didn't do and wondering just how long it will be til winter. Wintertime here is a time where it is dreary for months. Many overcast days. Months worth! And the days get shorter and shorter until by Christmas the sky is dark around 4:30. It's hybernation time as far as my body's concerned. And so I'd better get some energy soon or I'll be sitting here with the same undone house, undealt with mess in the garage and piles of other undone things. I had so hoped to paint my bedroom when I could leave the window open and blow it out with the fan. Alas that isn't going to happen now. It's already getting too cool at night.

Ah well. I can dream?

Wednesday, September 13, 2006

Now this made me laugh !

You Are 52% Healthy

Your diet is healthier than the average American diet - but that's not saying much!
You already know what's good for you. Just eat more of it.

Am I Disabled?

I've been trying to figure out just how we can be two people at once. The reason being that it seems that we're expected to be two totally different people at the same time.

We're told that if we were really that ill we'd be going to the doctor's office much more often. The first thing out of most people's mouths the minute they ask "how are you doing?" and you give them an honest reply is "have you seen the doctor about that?", as if of course the doctor would have some magic bullet to fix you right up instantly. Of course we might be able to avoid those people. But for those who are receiving any kind of disability there is the perpetual mounds of documentation they're after as proof, despite the fact that you've already been diagnosed twenty some years ago and there is no cure nor any real treatment that works.

There's been more than one of us who've run smack into the royal guardians of disability benefit funds who seem to be paid by the number of people they deny, or dump off the rolls. They absolutely will not believe you're still ill, it seems, unless you've dashed to the doctor frequently and had yet one more test to prove it --- though in the case of CFS/ME, FM and MCS there really is no test. So it seems that it's repeated trips to doctor's and his notations on your chart they're after. And all this at a time when we're told the health care systems are overburdened?

On the other hand -- and here is where the need for split personality comes in ... How many times has it been implied to us that we're just hypochondriacs who whine about every little symptom we have? -that very list of symptoms upon which the diagnosis is based. How many trips to the doctor does it take once one is diagnosed to realize that there is really absolutely nothing that the doctor can do for us but take up his time? (and possibly get another one of 'those looks' for bothering him again about a weird symptom which he may have concluded is just lunacy? --which might indicate it's time for a new doctor by the way) We're looked upon as being mental if we run to the doctor too often. What is too often?

How can we be both at once? Because we sure seem to need to be!

But perhaps I have the supreme question of all yet to ask here. The question is, Am I disabled? Is one disabled if a doctor hasn't labeled you as such? And why would a doctor give you that label if there was no one to show that label to? In other words, if one has no disability benefits program to apply for there is no paper. And if there is no paper, are you disabled? (seems one needs a doctor's note to declare such before it's taken as fact)

I wonder about this sometimes when needing to explain to some new person why I can't do thus and so, ever. After twenty-six years of ongoing illness (I use the term illness with CFS/ME in mind because it is a chronic illness) , many of those day spent mostly in bed, barely being able to care for myself, I definitely haven't been able to work consistently enough nor enough hours to earn what anyone would consider a livelihood... and it seems it is by that measure that most define being disabled. Or is it rather that if you're not disabled or dying they think you should have a job and/or do something?

Honestly I've been real tempted... One of these days when someone starts the grilling I just may retort, "Oh! Well I'm independently wealthy, lazy, and just do what the heck I want to!"

Do you think they'd respond the same way?


Tuesday, September 05, 2006

Is the CFIDS Assoc. just stressed or snoozing with the CDC?

Recently the CDC came out with a new study that has been talked about quite a bit on most CFS/ME lists and groups. Many of us were urked, to put it mildly, because after misusing the monies tagged for CFS research and finally having to produce something that something turned out to be merely a study which, apparently, was done to prove someone's pet theory. Some have gone so far as to name who that someone is.

While CFS/ME did get some media attention the attention it got probably caused more bad than good as the message that went out implied that those of us with CFS can't handle stress. That's the very short version of it, and isn't it only the short version that people hear and remember?

If that weren't bad enough it seems that at least one large group that is supposed to be advocating on our behalf is now marching down that same rail - like a train on a dictated track. I admit I was a bit surprised to learn about this, but then not. After all the CFIDS Assoc. has been around for quite a while and supposably had a bit of political input yet what have we seen done in the past ten years?

A Hummingbird's Guide To M.E. (an excellent site by the way) has a good article by Jodi Bassett on this subject which is well worth your read.

Just try not to get too stressed about it all --- after all, stress just does us in. Right?


Friday, September 01, 2006

Twiddling Thumbs and Polka Dot Dreams

I had intended to post here more often than I have been. But then I do have CFS. That means I'm full of good intentions but right down on zero energy.

I hesitate to post sometimes. After all, I ask myself who wants to read someone's whine? But then one of the reasons I started this blog to begin with so that others with CFS (FM and MCS) could see that they're not alone... or, if you're one of those who have unbelieving family or friends you could drag them in, point defiantly at the screen and pronounce: "See! I told you I'm not the only one!". And so it is that I'm writing here today. : )

This week has been the pits. Ok, ya, I did say that the last time I posted. I know. But it was the pits then too. Seems I've been choking on a lot of pits without the peaches lately. I can understand why Norms have a hard time understanding the fatigue we get. I can't even comprehend how anyone can be sooo very wiped out, weak, tired and still be breathing. How could I expect anyone else to know? Twenty-six years I've been ill now and each time I sink to this level of exhaustion I'm still stunned by it.

So what do I do when my eyes are too tired to stay focused properly? I can't read much. Can't work on art work. And then there's the numb, tingling hand and pain in arm that has stolen my ability to use the keyboard much. So even writing posts to my elists becomes difficult. What I do is play solitary, Spider Solitary to be exact.

Well, I thought I'd try to find another simple game to play, some word game as I do like word games. It frayed my mind. Loose nerve endings tangled up in knots and sizzled until steam arose. I quit and went back to my old familiar, repetitious solitary.

There's something comforting about solitary, all that repetitive, brainless placing card upon card over and over again. I recently heard that they've found that simple things such as opening jars with the opposite hand you normally use is good for Alzheimer's patients. Something about the brain, probably patterning and forcing a different area than normally used to do the same function.

So I've decided that playing solitary is good for my brain. It's relaxing. It requires little energy and maybe, just maybe by playing it over and over again I'm rewiring my head ?