Sunday, June 25, 2006

Dr. Wisenheimer's Confident Goes Down For The Count?

Heat and I do not get along very well. It seems as the thermometer goes up I go down. I ache bad head to toe, feel totally wiped out, drained. Did I tell you I don't like heat?

So what do you do when you're still hurting from a bad fall and then aching from heat on top of it? That's what I've been trying to figure out all week. To make matters worse my normal nightly distraction has been missing too. Most every night I play Litreati online (yahoo) with my sister---but her pc bit the dust this week which has left me sitting here bored out of my head. But that's nothing too new...

[Just now, in a hair-brained moment...ok well maybe it was a CFS moment? ...I took a swig of coke which tasted funny and realized it was my husband's cherry cola which doesn't quite agree with me - or so I discovered when I got an instant headache and swelling lower lip! (I've yet to figure out just what it is that sometimes causes my lower lip to feel like it's swelling and feels funny when I try to talk. I've suspected things like a coffee cup that was too hot but never have been able to coorelate it to any one particular thing!) So here I sit/lay blitzed out. But I digress---]

What I did to break the boredom, since I'm not quite with it enough to do anything really productive, is to create the cartoon above to illustrate just how I've been feeling. I thought it just might entertain you a bit and make this blog a bit more endurable! Ha!

Now if only I felt as good as Sigfreid up there.... !

Tuesday, June 20, 2006


Am I the only one out there who's days and nights are flipped? Don't think so. From what I've heard from other PWC's this is a typical problem. Are you one of them? Our body clocks are wound wrong it seems. My sister-inlaw works in a sleep clinic and tells me FMS tales... :) Seems the old alpha intrusion problem strikes particularly hard sometimes...

Zona ---" Zzz Zzzzzz z zZ Zzzzz "

Sunday, June 18, 2006

I'm the expert

I was sitting here feeling rather blue because it's been a week since I fell, I'm in pain and very, very, tired and watching piles get higher and higher in the house. The laundry is piling up too. It dawned on me that it is as if I expect "Them" to arrive. You know "Them" - the 'Others' out there who would make judgements about me based on some assumed rules of proper standards and conduct of living ?

Then I realized how down I am and that made me recall all the comments I've heard Them say over the years that are meant to prod you out of this state. "Stop whining." "Stop feeling sorry for yourself." "Don't think about the bad things." "Suck it up!" Of course these generally aren't said to the person who's feeling that way now, but rather in converstations when talking about someone else that reveal what They really think.

And there are piles of articles out there about how being blue is a bad thing, something that requires counseling or pills or something because we all should always be in a state of perpetual happiness, or that's how it seems sometimes. I've heard and watched many fellow pwdds (people with dumb diseases, as we call these) put on fake smiles because they're tired of being told that they're only depressed, not sick, so they dare not let one when they're blue. In addition Everyone knows that whining is a terrible thing to do, you have to keep a stiff upper lip and show bravado. We have a real problem with weakness in our society. Is it any wonder that there would be such negative reaction to an illness that screams "you're so weak!" ?

Why is it that Everyone is an expert? Do you really know everything from reading a book? A book that someone else wrote based on what they heard or read that someone else said? Ya, I've been contemplating this whole 'expert' thing lately. Seems somehow we've come to view alphabets listed behind names as 'all knowing ones'. I don't begrudge acknowledging that someone may have sat through a few more lectures or read a few more books or even sat and pondered or wrote a few more papers, but I have come to realize that that doesn't necessarily mean anything much. Having an illness/s that little is known about or understood has a way of causing you to observe that there are many other things in life that are equally not really understood, yet we see doctors and researchers, hear friends and family and talk show hosts all talking as if they know more than we do.

Today I'm declaring I'M the EXPERT !

No one knows my body better than me. No one knows what's in my head or how it works better than I do. Know one knows what I need. No one knows exactly how much sleep I need, what foods I need, what lifts me up or brings me down. I AM the expert on me! And you know, I am unique! (and proud of it!).

Mind you I appreciate it when my husband makes his best guess about what I want, and when a friend attempts to hit the bullseye for something that will sooth me. I'm sure not saying we shouldn't try to understand one another, far from it. What I am saying is that I think it is high time that we all realize that there is no standard mold that we all popped out of nor is there really as great of need to be Bobsie Twins as we've been lead to believe (and coerced to become). While it is desireable to have expected standards of behavior when interacting with one another, within family and community so that we don't have chaos and lawlessness, somehow we've gotten it all mixed it up. God's commandments are absolutes, right versus wrong, yet those we shrug off and call gray areas. Meanwhile things that are not detramental we treat as if they are absolute rules we must abide by. For instance we must all be up in the morning and go to bed by such and such an hour at night. Funny how that is, huh?

I'm the expert on Me. There is only One other who is more expert than I, and I consult with Him regularly. That helps because He actually knows me between than I do and He's also the expert on you - and sometimes clues me in about things I have only best guesses about. The rest of the so-called experts out there.... well... I'll weigh their opinion against my own observations. Sometimes I might glean a few things, most of it I toss out with the trash.

On the news last night I did hear about some "expert's" study that did coincide with my expert observations. They were just slow in discovering what I've known for years (ok, I admit I started paying attention to this due to a comment my Uncle made to me years ago). The report was about the connection between injured immune systems and white-glove cleanliness re: anti-septic homes. It seems that all this cleanliness has lead to weakened immune systems, particularly in children. See? Not only isn't it necessary to be pile-less but it may actually healthier to have a few dishes in that sink overnight!

I knew it !

Wednesday, June 14, 2006

Sick with Kidz??

For years I talked with others who also have CFS, FMS and/or MCS about the ramifications on our kids. There are so many ways that they are affect right along with us. When we are homebound they can become a bit homebound too, as things like transporting them tend to be a problem. Here's a short list on some of the things I've found or heard or thought about:

  • 1. Kids can be afraid that their sick parent may die. (something they rarely confess until they're grown up).
  • 2. Their friends and friends' parents might tag us as 'lazy' or 'crazy' or 'neglectful', or worse, maybe even 'abusive' and our kids may take those labels as family labels that reject them too.
  • 3. Financial difficulties - Often our kids can't be in many things because of the expense. Being ill doesn't come cheap! Loss of wages plus additional expenses strains most budgets to the max. Extras for the kids are often 'out'. Forget Little League, after school events etc.
  • 4. If our kids start having symptoms themselves and we haul them into a Dr too often the Drs assume we're just projecting our illness onto our kids.
  • 5. The kids may fear they will become ill too.
  • 6. Sick parents can not predict, can not commit in advance, can't promise to be somewhere, do something etc. Some sick parents never see Little Suzie's Christmas programs or Joshua hitting that homerun. Birthday parties?? How?!

These are just a few examples of ways our kids are affected. These don't even scratch the surface of things we run into daily. What do you do with behaviour problems when you can barely sit up for five minutes? What happens when Katie starts sleeping on your sleep cycle?

I have set up a Christian e-list for parents who have CFS, FMS, MCS (or any chronic debilitating illness) who would like to share tips, chat, vent, compare notes and encourage one another. If you're one of those parents or know one go to:

Christian MCS-EI w/Kidz and join us !

We'd love to have you : )


Sunday, June 11, 2006

Singin' the flat down blues

It's weeks like these when I wonder how many ways are there to count spots on the ceiling. Like a clutzy ballerina gliding on a banana peel during an earthquake I felt the floor slide under my feet as my body tipped backwards meeting the floor squarely on my backside with a thundering thud. I knew right then this was not going to make for a very good week. I was doubly sure when I needed help getting up off the floor.

The rest of the week has been mostly spent trying to perch on the bed without mattress coming into contact with much injured tailbone-back. I had no idea how many muscles are used in coughing and sneezing. Yes sir re, your talebone is definately engaged in doing those things. Forget manuvering from a laying to standing position. I also discovered how many things it is possible to pick up off of the floor with your toes. Bending just won't do!

Days before this happened I started experiencing a bit of stomach upset complete with nausea. Slapping backside into floor does not help stomach. I decided to try suffering in silence - ya right! - well sort of silence anyway. I mean just how much and how often can one sob and whine anyway? The real problem though was what to do with myself during this down time. Everything hurts.

I got the bright idea that I'd think of some more ideas for a couple cute comics. Somehow my creative humor evacuated as the black and blue appeared. My husband suggested I'd injured my 'thinker' as he always suspected. Ha. I pondered drawing a toon of him with a black eye. I guess being creative will just have to wait until another day.

So what do you do when you can't do anything? Can't even sit at computer. Heck can't even lay at computer - laying hurts! Turn on the tv and pray some grand oldie is on, you know that type that you can watch over and over and never get tired of it. Nadder with husband. Watch the cat find weird positions to sleep in on the bed. Dream. Ya that's the ticket. I'll be a director of some terrific script I write in my head as I go and pretend I'm Howard Hawks ! Lights! Camera! Action!

...only in MY film I'm going to make sure I have a body double to take the spills!

Saturday, June 03, 2006

World premiere of the very first Zona's Zone Toonz!

**Check back for more in upcoming days! :) I need to know I'm terrifically lovely, cute and wonderful... well anyway I would love to hear your comments so please leave them below.