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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