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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, August 3, 2012

Confession's Good For The Soul?

                 This child will hopefully never have a weight problem: he keeps farmer's hours!

I must confess.  Yesterday I "sinned" and I can't handle holding that secret.  It is making me go bonkers to have allowed anyone at all hear me declaring the definite steps I'll be taking in my conquering, to my best, my CFIDS/ME/fibro/migraines/sleep disorders, etc., to arrive at a bit of a true-blue "not looking too shabby for her age" for my upcoming birthday in October and me not doing it.  As I'm sure half the world knows by now (delusions of grandeur?), I went into a Herxheimer-like reaction after KL.  Things were catching up with me from the compartment syndrome surgeries, not to mention two years of living on the edge with my daughter's sudden illness which stopped our entire family's lives cold as we rallied and fought to keep her going.  And these are just the high points.

We're into year 3 of remodeling (walls going up or down, the house being totally reconfigured), though I see I won't be getting my dream kitchen, even modified, any time soon.  This is a huge set-back because I had remodeled it on paper where I could do a bit of bossing around as I lounged in a semi-family room (thus getting me out of bed!) looking out on a lovely garden (perhaps even going out for a bit now and then) and in the other direction, instructing whomever on cooking and baking.   To me, the kitchen is sacred because it's truly the heart of the home. (Cliché but true!)

But really and truly, I definitely do think that there's something new, majorly wrong with me, that which started affecting me back in November, which, in its own way, started me into a downward spiral.  I'm not being very helpful to my doctors as I don't know how to explain this new malignant feeling, whatever it may be, and really, where does one begin?  But blood work has been ordered as everyone scratches their heads and I can't be more useful in my description, seemingly having run out of all descriptions and besides, working hard on just hanging in there.  Think about it: good thing I was a English lit major - how else could I have supplied so many descriptions over the years?  Well, that mine gave out a while ago. Now the docs are on their own for the most part.

But going back to the confession.  Just as I was FINALLY almost off all sugar ("detoxing" was really and truly hard this time), I ate something I never eat anymore: potato chips!

Now the good news is that afterwards I slept - and well.  The bad news is I ate a huge bag of chips. And y'all just know it didn't stop there!  Ben and Jerry's followed with brownies.  Yuck!  

But I'm officially washing the slate clean and starting anew.  So here are the latest things I'm going to work on because we are talking about a beached whale here!  (Too ill to do much moving, BP perilously low, nothing helping pain, blacking out each time I get up, migraines galore, all senses heightened even more than the usual...you get my drift.)

- So, on the diet front, eating "my healthy way" is just not gelling as well as usual, though I will certainly keep on trying.  I have to.  I need to feel better.  Hubby better get into this but a problem is that just last week he made me a wonderful salmon dinner and I almost barfed.  (Uh...I guess anything that swims is out.)

- After yesterday's post about the hormones and sleep, I must come up with a better sleep plan.  I've been thinking of various ways to work on this (as if I haven't all these decades?) but I hope yesterday's post was a huge shot in the arm, or kick to my be-hind, whichever!  So pep talks to self will commence. ("Haranguing" may be the more accurate word.)

- I need to make up menus - something I've been meaning to do for I have no idea how many years.   This way, instead of going through the whole thing of, "what do you want to eat," and "well, what do you have?" going back and forth for (literally) a couple of hours, we can make a list for the week from the "Irene" menu.  And, strangely enough, food, for the first time ever (other than in November) holds no appeal to me.  I derive no satisfaction from it.  However, I'm still always hungry, something that should have ended a couple of days ago.

- must teach hubby portion control.  (Losing battle!)

- need to take those vitamins religiously (Post coming up soon, I swear!)

- drink more water, especially before a meal. (It's just water, self, and I don't need to climb Mt. Everest to get it, for heaven's sake!)

- a weekly IV nutritional, similar to a Myer's cocktail.

-be more precise and consistent as to the hour I get my HGH shot, etc.

I was struck by the line from yesterday's post where the researcher found that with not enough sleep, no matter how much a "subject" ate, they were never satisfied.  Bingo!   My life in just a few words!  And THIS is precisely why I think sleep and food and their relationship to each other absolutely need more research.

There's not much money for the Big Pharma's regarding CFIDS/ME/fibro.  But there is a HECK of a market out there for insomnia and pain. (Just watch the commercials during the network 6 PM news shows!)

We just need to figure out how to make Big Pharma's realize these things and see the market for profit for these illnesses.  I think then we'll start seeing a huge and quick amount of info coming forth that would help us tremendously in the CFIDS/ME/fibro, insomnia, migraine world, as well as many other diseases or disorders.

What do YOU think?  Any other ideas for helping us put on our most gracious faces?   Because yesterday was not one of my more gracious days and that shames me.

At any rate, hope all are feeling the best they can be, only better!  Here's to a terrific weekend, however and wherever you spend it, with some mighty good sleep!

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