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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.

Sunday, December 30, 2012

It's OK to Bully Fibro & CFIDS/ME/CFS Patients?

I was just about to START my dreaded work/labor of trying to fall asleep when I suddenly had a thought go through my head that has been bothering me for more years than I can even remember. The only reason it came to the surface today was because of the new year coming up and I was thinking about the person I am becoming (see link). To my surprise (though not shock), I'm not sure that I like this new person at all. However, in my defense, I think that it's not just me, but a complete intolerance that is pervading our society.  

It's a problem caused by lack of manners in our society, in general.  It has to do with people ridding themselves of the filter that goes between the brain and the mouth. It also has to do with a very dangerous and insidious form of passive/aggressive bullying, unfortunately, much of it on behalf of the medical establishment.  And make no mistake: it's a dangerous trend because this negative and even "ridiculous" picture of "us" trickles down and more often than not, influences how our friends, family, co-workers and just about everyone whom we come into contact with in our lives, treat us.

I really did not want to end the year on a negative note, but in thinking about things, I thought that perhaps this isn't as pessimistic as it is empowering.  And boy, we with CFIDS/ME/CFS and fibromyalgia and indeed, all "invisible illnesses," need all the empowerment we can get!

But first, the background, because if my readers know anything about me at all, it's that there's almost always a backstory which leads to the topic I happen to reflect upon. (In other words, I ramble on a bit too much! But some good stories come out of it, no?)

I'm puzzled yet again and am more determined than ever for my "Hunt for Red October"  and changing from the defensive to the offensive military-like plans which my GP and rheumy have put together for me.  We're bound and determined to try to get to the bottom of whatever it is that is "new, majorly wrong with me," something we've not had a chance to dwell upon because of all the red herrings thrown in our way, along with putting out fires, right and left. (See link about the "Invasion")

However, this illness, this cursed core illness of CFIDS/ME/CFS! Just as I thought I was making strides in the not falling and walking department, on Saturday I found that I was again too weak to walk the few feet needed to get to the bathroom.  I'd already been holding my breath for my appointment in six weeks to see my endocrinologist and have even thought I might give him some sort of succinct report, bullet points and all, in order to get through everything that needs addressing within a reasonable amount of time, an hour in the past, who know what now.  My ankles are frozen again and THAT adds to the walking difficulties in yet another way.  At any rate, back to topic: I've even had to start brushing my teeth in bed.  Hubs helping me walk is not awfully successful: it's all dead weight and really, with the orthostatic intolerance (and probably a host of other factors) I doubt that anything short of a stretcher would do.

I must admit that I'm beside myself.  I really am finding that I'm barely able tolerate this yoyo existence.   One day I'm getting better, the next I'm sicker than I've ever been before - and that's saying  lot for a 38 year history!  I'm definitely in a downward spiral, no matter how many pep talks I try to give myself and famiy. (Back to this post again for the "Up! Up! Up!" talks I force on my family.)

My "good" days aren't too awful, relatively speaking.  I can't get out of bed with the exception of going to the bathroom or sitting at my PC for a couple of hours - that is, if a pain killer helps me and is successful that day.  But I'm having major pain, weakness and migraines - not helped by any of my migraine meds - on a daily basis now.  I sit at the computer in the way a woman does her LaMaze for childbirth, as a distraction if I can manage it.  TV is certainly not keeping me concentrated on anything - though there is great hope for an hour each Sunday once Downton Abbey arrives here in the States. ;)

On my bad days, I feel as if there is no skeleton within my flesh.  I can't stand up. I feel like it must feel to walk on one of those planets where the gravitational pull is enormous.  I try to up my increasingly low BP with salt, but that's just not working much any longer. My nausea is a constant companion.  And yet half the things going on in my system I don't even register because my body is so overwhelmed and too ill to take it all in at once.  

But worst of all, I find that I'm becoming a person I don't care for.  I feel angry, frustrated and have no patience whatsoever.  I used to be a daughter of the South who would rather poop in my pants in public than say a harsh word to anyone, but now I have no patience with anyone who makes remarks such as "if only you would...."  And oh how I've never been able to suffer fools gladly, a huge defect in my character, I know.

However, if someone says that they are feeling their age too, I snap at them, unable to endure the platitudes any longer.  If someone (like an old college friend) makes a joke about my health, I can no longer pretend to find it amusing and "take it," but go into a Southern attack mode.  I have absolutely no patience and would like to smack people who offer me advice, especially in direct messages on twitter... 

How STUPID do they think I am?  They have no idea what stones we've dug up in the past 38 years, have no medical training, have no idea what my history is, have most likely never read my blog.  Yet "they" are so rigid in their thinking that they think, for example, that I will miraculously be better from occasional B-12 shots.  Surprise: I get a B-12 shot on a daily basis, but that is not good enough and so I  get crossed examined about other nutritional aspects which we've, my doctors and I, have covered in great detail over the years.  I even get a personalized version of a Myer's Cocktail a couple of times a month: how many can say that?  It's like these people have a bone that they won't let go of!  If it's not vitamins, then it's that if I get my hypothyroidism under control, I'll immediately and magically be cured, though my hypothyroidism became an issue only a few months ago and has been monitored by both allopathic doctors as well as homeopathic doctors, and everything in between.  

I thought that the turncoat medical CFIDS and fibro specialists were rigid in their thinking.  I'm finding that friends, extended family and twitter followers are even more rigid in their fanaticism.  And do they even think at all about what they say?  They just blurt things out, like a knee-jerk reaction.  God save us from these converts.

But I do want to say, and make it absolutely clear, that for the most part, everyone's been absolutely wonderful and supportive with advise.  I especially love the comments and suggestions I read here on my blog and my Facebook page.  These are comments which are diplomatically posed, by friends/supporters/members of my blog who have some idea of what is going on.  These comments I truly cherish because they are made with not only a "good spirit," but knowledgeable and diplomatic ways.  Yes, I've come to truly love all the readers who have written comments.  Some days, they really are what get me (and hopefully YOU) through the day.

And so, I wish everyone a wonderful New Year.  My sincerest hopes are that those who are healthy stay healthy, that those who are ill improve and live the lives y'all deserve.  I hope everyone is feeling their best, only better.  I appreciate everyone who is a member of this little group.  Thanks, guys.  Caio and paka!

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  1. Irene - All I can say is there are a lot of fools in this world who think they know it all. At times, a person could wish that these people would have to deal with what you do on a 24/7 basis. Thank God for good friends and family who are sympathetic to your condition.
    I wish you a happy new year and an upward spiral!

    1. I know the world is full of fools. However, when you hear such negative things, over and over and over again, especially by the medical community and "supposed friends," it becomes like a brain-washing of sorts.
      Most of us are type-A personalities and we are our own worst critics. Hearing the doubts we have about ourselves from others just adds to the pain of all our deep-seeded doubts, as well as the losses we've suffered. Seeing all the hard work we did to try to get to the point where we'd be successful, working so hard in order to accomplish degrees, etc, in order to accomplish our goals and then have it all ripped away hurts beyond description because we played by the rules, not abusing drugs, or any other stupid behaviors that get people in trouble.
      I know that life's not fair. But it's also very painful, psychologically as well as physically. Sometimes it's like living a life that's already dead.
      I'm grateful that I have friends like you, Martha. You've been a great support. However, parts of my family are NOT at all supportive and are convinced it's all because hubs "spoils" me. Boy was my brother shocked when he found out I was intubated a few years ago, then laughed it off. That's hard to take and we are estranged b/c it's so much less painful that way (remember my brother? He's not a very talented doctor, nor his wife, for that matter! Even my mom tells her friends not to even try to go see them!)
      Thanks for your support. And I wish you and your wonderful family improved health (especially Pete), success in all you do and much love in your life. Happy New Year! xx

  2. I wish you a better 2013. No, it's never okay to bully and I don't take it either. That's probably why I have few friends left, but I don't care. Thankfully I seem to be in a remission at the moment except for my hands and feet. I've been waiting for foot surgery over 3 years now. We have rationed health care here in Canada. I am able to get out occasionally with my husbands help. I no longer feel safe driving myself. It is what it is and I never offer advice. What works for one person doesn't necessarily work for another...ciao

    1. Yes, Rositta, I think one of the most painful aspects of this DD is that we lose so many of our friends, not to mention family members. I'm thrilled to hear that you're in remission and hope that you can get a lot of things accomplished from whatever bucket list you have: it's a great feeling from the one remission I had! Glad you agree that what works for one person doesn't necessarily work for another - I don't know why people have a hard time with that concept.
      Caio and paka! (And I did so enjoy reading some of your posts earlier today!) xx

  3. No, it is never ok to bully anyone. Especially those of us who already deal with too much already. Personally, I have become a pacifist to simply avoid as much negative energy as possible. After recognizing that any negative energy affects my health so dramatically, it's now a self defense mechanism that is built in. Sad huh?

    I was once a go-getter. "No" or "can't" were not in my vocabulary. I simply found a way to do what I wanted, when I wanted to do it. I made stuff happen come hell or high water. Both in my private and working life. Now? Not so much. I'm homebound, way more contemplative and even patient (omg say it isn't so!). A pacifist - can't we all play nicely together? All due to this crazy upheaval of lifestyle change that has been forced upon me thanks to Fibro.

    YOU however, amaze me. Your "up" attitude despite everything that you deal with is truly to be commended. I'm in awe of all you endure hon. We each have our own personal battles that no one but us can truly comprehend. I also note that often I meet others in far worse shape than myself, but I still don't count myself lucky for it. I do however, notice how STRONG you are. Don't ever forget it either :)

    Back on topic! ...

    To me, bullying someone who isn't exactly in any shape to defend herself (in my case, resigned to her situation) is deplorable. Yet I will be forced through more hoops and to do whatever it takes just to find a new doctor (now that my old one flew the coop and moved to another Province). When I know so many of us are subjected to poor treatment (or NO treatment) by the doctors we are saddled with, I'm terrified. Just terrified of not being given the fair and just treatment and pain relief that I deserve. So terrified. Yet I know I will do whatever they ask of me because I simply have no choice. Even if I am asked to pee in a cup to prove I'm taking my meds "as prescribed". Now there's some bullying huh? lol

    So here's to a BETTER year in 2013. For all of us. Much love and light in the New Year.

    P.S. I hadn't heard of a Myer's Cocktail before. I Google'd it and wonder how much it helps you?

    P.S.S Hello fellow Canadian and Ontarian, Rositta! Looking to follow your blog too hon.

    1. Hi Shannon! Funny that you've become a pacifist and I feel as if I've become this anarchist!
      I honestly don't recognize myself some days and wonder where all this going over and over of injustices comes from, like the recent fiasco and criminal behavior of the Ampligen hearing. Hubs can't believe my change either! I have to discuss it and dissect it ad nauseum, until hubs cries, "uncle" and anything else just to get me to stop! (LOL!!)
      Yep, as I wrote in the comment to Martha, most of us are (or were) Type-A personalities and we just did everything and felt it was the only way to go. That certainly ended up biting us in the ar*e.
      The Myer's cocktail has to be given in the form of an IV, with the vitamins and nutrients that you need but are lacking, even some that you have but are obviously not being absorbed correctly or sufficiently. I try to get them about every other week, but that is only an average: at times I get them more often, other times I get them much less frequently, all because of how I'm doing. I just looked up Wiki (not the greatest source but...) and it says,

      "The "Myers' cocktail" is the colloquial name for a nutrient cocktail invented by John Myers, a physician from Baltimore, Maryland, and developed by Alan R. Gaby, administered intravenously and promoted as an alternative treatment for a broad range of conditions including asthma, fibromyalgia and chronic fatigue syndrome. As of 2002, between 800 and 1,000 different patients had received this cocktail from Dr. Gaby and the cocktail was reportedly administered to Michael Jackson to boost his energy. However, evidence for its effectiveness is largely based on case reports of the cocktail's effect and clinical studies on its constituting nutrients when administered intravenously: the conclusions to be drawn from the few clinical studies of the cocktail itself are still equivocal."

      It helps a whole lot and I started with them in 1997, though the first physician to give them to me started administering them 50 years before that, calling them simply "nutritionals." It also helped because I needed to have chelation for all the heavy metal toxicity (off the charts) that I had going. (Still need to go back to chelation.) My version of the cocktail also helped replace the nutrients that got washed away with the toxins. That's all a simplified version, of course. I do plan to write about this eventually, but have to figure out just how to explain without going into huge detail like I have a tendency to do.
      (Martha: heavy metal toxicity was a legacy of Hopewell and playing in the James River as a child where Allied Chem and Reynolds Aluminum dumped their chemicals into the water just a few hundred yards from where I'd swim and fish! Hubs said I was a "walking toxic dump" when he saw the report and my GP was truly shocked, never having seen or heard of anything like this before. My chelation, etc, took place in a city about 2.5 hrs away. Anyway, the numbers were truly unbelievable and the chemicals in me were shocking, to say the least!)
      Good luck with finding a new doctor, Shannon. I can only imagine how terrifying that is: I know my GP won't be around with his practice too much longer and that scares the bejeebees out of me. And my endocrinologist is going to retire soon... Ugh! It's all so scary, especially since I think the doctors today are not nearly as good as the ones now getting ready to retire: they didn't get the same training and our country's finest minds are no longer going into medicine, because business is a much more "respected" field with less hassle and better reimbursement. What a mess! xx