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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.

Thursday, February 28, 2013

Five Quick Tips for Caretakers...

You want attitude???

What is it that those of us who have fibromyalgia and/or CFIDS/ME/CFS need when we are at the end of our ropes?  Well, since you're probably dying to know....

I thought that for humanitarian reasons only I would list a few tips that might end up keeping someone from killing a "loved" one.  At the very least it might promote family harmony.  In fact, it might be a good idea to enlarge the font from this post, print the tips up and tape them up around the house in numerous places.  I suggest at least one sign per room but you be the judge.  Some people require a lot of reminding.  Oh, I'm not naming names....  As I said before: this is purely one of those spontaneously generous things I'm in a mood to do tonight. (Good heavens, I do so hope you are in a state where you're not sure if you should laugh or you should cry!  And I do so hope that this is at least marginally more humorous than Seth Whatever-His-Name-Is, the guy who hosted the Oscars this year.)

With that, a drum roll please!  

  • No surprises: we have enough surprises in our lives.  Every day we have something fall apart in our bodies or something that breaks in our homes and needs to be addressed.  Our lives are often nothing BUT surprises.  So, please don't do us any favors and try to make us happy with even more surprises.  We'll let you know what we want/need. (Note: WE, however, are allowed to surprise YOU!)
  • Remember to "water" us!  If we get snippy, all too often it's something like our sugar levels or blood pressure dropping - or worse, it's already dropped and we're suddenly miserable.  We can't think when this happens.  YOU, caretaker, CAN!  So, remember, we need water!!!!!  A LOT of water.  (Basic Fibro & CFIDS 101.)
  • Noise reduction: we cannot tolerate noises.  If we can hear the soda can pop in the kitchen on the first floor from our beds on the second floor what makes you think that we can't hear crashing pans or dropped things down there?  You don't think the squeaky wooden floorboards are NOT going to drive us bonkers?  (JUST a random example!)  Get your act together.
  • Stop changing gears on us! If we are watching TV and the darn cell phone rings, do you really need to answer and talk to whomever?  Can you not tell people to hold off calls for a set hour or two?  Don't come by and "pretend" you're going to spend time with us if you are answering phone calls every five minutes and going into a lengthy conversation.  If you need to talk, leave the room and DON'T come back because that is changing gears again and we've already established that changing gears is very difficult.  So stop it.
  • Don't leave us out "of the loop."  Do you have any idea how much it hurts to find out that there is important - and even not-so-important - "stuff" going on in our family's lives, decisions being made about finances, priorities, etc., and we aren't being told because "it might be too much"?  We already have so little control in our lives that when you leave us out of the loop you are making us feel even less in control of anything and this behavior is completely demoralizing and demeaning to us.  We count and we DO still have a brain.  It just happens to be a brain that is slower but it's basically as sharp as ever. (Studies have shown!) We even have good instincts, if you think about it.  (My instincts tell me to let you know that if anyone in my family suddenly keels over, *I* didn't do it!)

And that's it.  As they said back in my day: put THAT in your pipe and smoke it.

Caretakers: do you want to survive?   

Those who are sick: give this to your caretakers.  They do a lot FOR us, but there are days when all of us are not sure it's worth it.

As always, I hope everyone's feeling their best, only better.  Ciao and paka.

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