About Me

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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.

Tuesday, December 18, 2012

A Weighty Problem

I can't believe that I've never written about a "truism" which refers to me in regards to my ongoing battle with CFIDS/ME/CFS and/or fibromyalgia. It has to do with my weight and how I feel from a health point of view. I've written before that I like to weigh less because I feel better without too much extra poundage.  Yes, this seems like a very basic truth and hardly worth a mention.  However, there is another aspect to this weight issue.

About twenty years ago, I realized that others in the family could tell how I'm doing not just by my white or blue lips on any particular day, or by the changing of my eye color - that they're green when I'm feeling well, but become blue when I'm really sick or in a cruddy mood, the mood usually having a direct correlation with how sick I feel.  Talk about a vicious cycle!  There's an even easier way, an extremely fast way, to tell anyone about "the phase" I'm in: the sicker I feel overall, the heavier I am; the better I feel, overall, the lower the overall number on the scales.  It is such an odd thing, when you understand that it has little or almost nothing to do with trying to lose weight through great willpower or any other means.  It has to do with the following:

  1. When I feel sicker, for some reason I think food will cure all ills.  Two symptoms I have a really hard time dealing with are nausea and sore throats.  Give me insomnia, give me pain out the wazoo, migraines which need hospitalization, just about anything, but please do NOT give me a sore throat or nausea.  When these two symptoms appear, almost all bets are off.  Hubs can't believe that I would want to eat while nauseated, but somehow I always think that I'll find the absolutely right food that will magically cure me. Consequently, I'll eat a seemingly hundred different things which are, of course, of no help at all.  Yet somehow the message in my brain gets garbled and eat I do, to no end.  Nausea I find to be a bit easier to deal with because there are some anti-nausea medications that help, plus crackers and ginger ale will also alleviate nausea to some degree. But on the whole, I try every food and any food, thinking I'll hit the magic "thing," and nothing happens other than gaining more weight. (And I'll bet I'm not the only female with this crazy way of coping!)
  2. I've already spoken about the sleep and weight gain connection in terms of hormones. (See link.)  No matter how much I try to eat as little as possible, the weight gain is there despite EVERYTHING if I don't get enough sleep.  Somehow, I think it's doubly unfair to have this problem, but there you have it. Besides, how fair is anything with this illness?
  3. The better I feel, the fewer medicines I need to carry me through.  Oh there are and most likely will always be certain meds that I'll need, but there are a few that I can cut back on or even perhaps cut out altogether in better stages of my illness. However, there are some that cause me to gain weight and those I'm always game to cut back on in my finer periods.
  4. Now this last observation is one aspect of my severe insomnia which I've hesitated to touch upon because I don't want to set a bad example.  However, in the spirit of being truthful and that knowledge is power (i.e., don't do this!).... If I'm in one of my worst-of insomnia stages and my entire being is falling apart, finding myself only one or two step away from hospitalization, I try to go into a "sugar coma," so to speak.  If I'm extremely ill, or on a "worse than ever patch," I will try to interfere or break it by eating a whole lot of chocolate bars.  (Note: I try to eat very little sugar in any form because this is one food which makes me sicker than I need to be.)  The first time I tried this chocolate approach was as I was admitted to the hospital with a migraine so bad that I needed a CT scan and an MRI.  I have no idea why I asked hubs to get me five chocolate bars from the vending machine - and knowing me, he understood that I MEANT ten bars.  (We call it the "Mr. Goodbar" phenomenon; though we've long ago forgotten exactly how this phenomenon, this asking for less of any food than what I really mean, got this name other than it was a reference to a novel which I happened to be reading at the time.)  Urrr, yes, back to subject at hand!

About seven candy bars later, I blissfully fell asleep for about 24 hours and when I woke up in that same hospital it was minus my migraine.

However, a huge caution:

  • this is a very dangerous path to take because of the impact of so much sugar on the the pancreas,
  • it just doesn't work if I try this too often. My body builds up a tolerance towards too much sugar and
  • imagine the weight issue; despite the fact that desperate times call for desperate measures, etc., I find it difficult to get back to eating no sugar.

Another caution: like many with invisible illnesses, I really hate it when people see me and say, "you look great because you've lost so much weight!"  They truly believe that I'm naturally cured at best, or that I've come to realize that everything I feel is exaggerated or "all in my head."  How do I know this?  Well, it doesn't take a rocket scientist to understand these sorts of things when they are said to your face!  I'm actually feeling cruddy but it's all a matter of relativity.  I want to say, "bite me!"  However, I do realize that that's rather rude.  

Furthermore, how do you explain that despite the number on the scales, you're still too sick to do anything but be in bed and wander out of the house only about once every month or so - and then only because you need to see your doctor - with no one seeing the consequences of those hours of being out and about?  Ah yes, the joys of "invisible illnesses."  I yearn to yell, do you honestly think that I choose this weight, because no matter the number, I'm still overweight, be it because of meds, having to do too much, or the phase of earth aligning with planets.  (That last part is a feeble attempt at humor.)

How do YOU feel about this observation?  Does any of it hold true for you?

At any rate, as usual, I hope everyone's feeling their very best, only better.  Ciao and paka.


  1. I've been struggling with weight most of my adult life. I personally think it's a way to protect myself when I'm feeling so sick. Seems that this is a "normal" kind of reaction to being sick, or so I've read.

    When I first began experiencing pain so bad I thought I was having a heart attack, it was at work. I had a new job, a promotion and had recently lost 60 pounds! Through a lot of work, eating nearly a strict vegetarian diet, I was on my way to finally beating this weight thing. Eating vegetarian just makes my body feel better. Having a hubby who is a meat and potatoes kind of guy makes it incredibly difficult though. Since he's the one buying grocery these days, I get what I get.

    So was I pissed off at hearing that all the medication that may help alleviate my symptoms had the oh so wonderful side effect of weight gain? Hell yes! My doctor encouraged me to try Cymbalta and Lyrica anyway. Despite how awful I've heard it was to get OFF Cymbalta, I listened to my doctor and complied.

    The weight came back and then some! As it is wont to do. With constant chronic pain, how the heck is one supposed to exercise enough to help lose that weight again? With the loss of my income, how hard is it to eat healthy when you're barely making rent each month? Yet so many people say it's possible if you just try. Yeah, and if I could but visualize myself as a positive ways, I could "attract" money and become financially self-sufficient, a millionaire even!

    Since my Fibro diagnosis, it seems everything works against my being able to lose weight. So I've pretty much given up on the weight loss thing entirely. I sincerely wish it were otherwise, but I'm sorry, SLEEP and pain relief are my priorities. Period.

    So I've forgiven myself for gaining the weight. Even if it wasn't "my fault" entirely to begin with. All I can do is all I can do. Having others state that I'd feel so much better if I just lost some weight is insulting, at best. Like you I'd like to scream at people who tell me that. They may mean well, but they really don't understand how hurtful it is to make such an obvious statement. Like I'm some kind of idiot who simply didn't know any better.

    No wonder we're shut ins, right? Forget the horrible symptoms and sensory overload issues Fibro blesses us with. Who would want to put themselves out there for ridicule and derision from people who make snap judgments simply because we don't look sick, but we DO look overweight. I've dealt with the stigma of being overwieght a long time now. People look at me (or look through me) in a very different way simply because of being overweight. No wonder I prefer my own company! Society has trained me well.

    1. That was so powerful, Sharon, and you pulled no punches....good for you! It IS insulting how we are treated by our weight. I've been up and down so much I'm like a human yoyo.
      But one thing I've discovered since this 23.5/7 in bed thing. For the most part I don't gain weight and can even lose it, if I'm on bedrest as I'm supposed to be. Controversial to say, but the absolute truth (boy! Hot topic here!) Any excercise is a killer for me. PERIOD!!!
      Once I gave up some meds and lowered others substantially, plus was on total bed rest, I lost 75 lbs the healthy way. Sadly people DO treat you much better if you're thinner...I tend to ignore them since who needs friends who are only around for the good times?
      Thanks for writing in and sharing such private, close-to-the-heart thoughts and feelings. xx