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.
Showing posts with label health credits. Show all posts
Showing posts with label health credits. Show all posts

Friday, December 21, 2012

Friday Tidbits: Bits & Bobs of Help

An idea of the switch-in-the-cord idea,though not the sort of lamp I'd use for bedside. (But oh so pretty!)

It's Friday again and once again I'm so happy to see the week is coming to a close.  (I've written that a bit too often lately, haven't I?)  The family's been stricken with various degrees of the bug which never went away, all because of the freakishly warm winter of last year.  More than ever, I'm personally looking forwards to a few good, hard freezes to kill off as many of the viruses and bacteria as possible, those looming around our town. Last night hubs was almost spitting bullets because I had sheets of sweat coming off of me as I tried to write my post. Today, I can see that the worst is almost over, but I still just want to sleep, though still not sleeping as much nor as well as a "normal" person would.  Everything's relative!

Oh Dyson DC35, how I love ya!

  • In fact, talk about sleeping: I've had more sleep this week than I've had in years!  I wake up and am totally miserable but finally fall back asleep for a minimum of a two-hour nap, unable to keep my eyes open.  Who knew there could be an upside to my flu?  
  • Not too long ago, my BFF and I were on FaceTime and one of the things that came up (we CAN and DO talk about everything, anything and nothing, for hours at a time) was that she brought a gem of a vacuum cleaner.  She recommended that I buy the Dyson "digital slim," dubbed by Dyson to be "the most powerful cordless vacuum."  Well, I finally ordered it from Amazon and their description is no exaggeration, so good, in fact, that I quote:
  • The Dyson Digital Slim vacuum cleaner has twice the suction power of any other lightweight cordless vacuum cleaner in use, making it the most powerful cordless vacuum. It is ideal for quick, flexible cleaning on all floor types, stairs, upholstery and inside the car. 
  • Dyson engineers developed the DC35 for versatile spot cleaning- it’s suitable for every floor surface: carpet, vinyl, tile and wood. It has a motorized floor tool with two types of brushes. Ultra-fine conductive carbon fiber brushes remove fine dust from hard floors. Rotating nylon bristles remove ground-in dirt from carpets.
  • The detachable long-reach wand is made from lightweight aluminium. It reaches high, low and into awkward spaces. You can also remove it and use DC35 as a handheldA docking station conveniently stores and recharges the machine when not in use, or the battery can also be recharged separately from the machine."
was thrilled to see that it was all and more than BFF (and Dyson) had described.  It's especially good for anyone who is sick and can't do much.  It breaks down into small parts and you can actually do stairs with a minimum of effort.  There are no pesky cords to mess around with (I absolutely have an OCD-like loathing of cords of any sort) and can grab it quickly for a small job like the carpet that's by my bed, without worrying about overdoing it.  And because it's so easy to use, you end up using it a LOT!  (Actually, it's quite addictive!)  For more on this miracle product, see this link.  It's worth every penny!  Check the before and after Christmas sales as BFF found a 20% off sticker price on Black Friday weekend, too late for either of us, alas, though we're not at all remorseful because it's just THAT incredible!  And a note: I had a bit of a sparkle and glitter episode from some Christmas ornaments we recently bought.  It was EVERYWHERE.  The Dyson DS35 took on the mess as if it were fighting the merest of jobs.  Phew!  

  • With Christmas quickly looming ahead, I'm not sure we'll even get to finish the trimming this year. As soon as the lights were up on the tree, the ER runs started in.  It's a rather nasty GI bug. Forget about the outside of the house: we've only slapped a wreath onto the front door, this in a neighborhood and town known for its "city of lights" reputation with well over a million tourists coming in for the festivities.  Frankly, I'm surprised the neighbors haven't run us out of town yet. (I'm certain that they're giving us a year's grace period before doing so, so we have GOT to get back on track by next year!)  I'm trying my best to be mature and realize that hubs and I are no longer young enough (what???) to do the outside decorations ourselves and will have to start looking for someone to do the honors next year.  I suppose, too, that that IS the responsible thing for the person with CFIDS/ ME/CFS and/or fibromyalgia to do, though how I hate giving in.  But, it's all about "health credits" and "spoons" now. 
  • And finally, such a seemingly mundane "little" thing which is driving me loony-tunes.  I'm looking for the lamp I had by my nightstand before we'd temporarily moved up to the attic.  It was the sort that has the on/off switch on a cord and, it turns out, it's such a great feature to have.  The on/off switch would rest against the side of my nightstand and it was so easy to just move my hand over ever so slightly and have the light off.  Instead, now I need to reach all the way over, through a jungle of items, trying not to knock anything down as my hand searches for the actual lamp in order to turn it off in the "usual" fashion.  Nine times out of ten, it wakes me up if I'm just about to fall asleep, often with a bit of a disaster as things fall over. With the little cord by my side, it was so easy to turn the lamp on and off... absolutely wonderful for the insomniac. If you have trouble with sleep and get upset because of the lamp issue, consider the lamp with a (toggle?) switch on the cord.  Oh my: who knew that there IS a wire out there that doesn't get on my nerves, but the very opposite.
And that's it for the day!  I hope that everyone's doing their best, only better and enjoys the weekend!   Ciao and paka!

Friday, September 28, 2012

Friday Tidbits: Coping and Thriving



OK, I know that I can be strange at times, indeed very strange. That's what this dreaded CFIDS/ME/fibromyalgia life experience has done to me.  But I'm here to pass on a bit of that strangeness, which actually are survival methods, to the current generation, sort of handing off the baton, so to speak.  Make of it what you will.

  • "Mind-games":

I got to the point where I was starting to go out almost NEVER.  Going to the ob/gyn was about as exciting as life got fired up around this period.  The coping mechanism/mind game I came up with, especially as I had a beautiful closet full of incredible clothes, was a bit unusual.  

On the days I felt well enough, I'd hang out an outfit on the outside of the closet door at the foot of my bed so that I felt that in some way I was still indeed a part of the world and could actually "enjoy" wearing my clothes the easy way: clothes had become difficult to wear because my skin and nerves were just that sensitive.  

It sounds crazy but I didn't even realize what I'd been doing and it helped me survive one of the worst period of my 38 years with this nightmare.  I most certainly hope that I'm not the only person in the world for whom this sort of "therapy" worked?!?  (And do I get extra points for unique thinking?)

  • Attitude: 

I find that at times the smallest, unnoticeable and innocent act can throw one over and mess up carefully-conceived plans.  I had moved my son's old room armoire katty-korner to the wall and that tiny detail gave the room a completely different look and feel.  However, not too long after, a young lady was helping me with decluttering the room, as well as other rooms, and in her enthusiasm, she took it upon herself to turn that armoire back against the wall to it's "original" (read "boring") spot when I was busy elsewhere.  

I'd been making great strides with that room.  However, because it took so much energy and psych'ing myself up for this project, it took just the smallest "negativity" to make me feel as if I were a balloon that had been popped and the air was escaping too quickly, just like my hard-earned resolve.

From now on, I must try to impress upon my family how important attitude is.  They are supportive, yes. However, although they understand, somehow they do NOT understand how difficult it is for someone like me to do anything at all. Though they understand how ill I am, they are somehow unaware that a look with a puss on it's face or innocent words such as "Ugh!  I'm just so tired" can undo any "health credits" I had so carefully worked on building up in order to do a small project.  And no, two years later, that armoire is still in the "wrong spot" and the room is still a mess.  I may put this room on my to-do list this weekend if we can manage to stay healthy!

  • The Lists!:

Time gets away and before you know it "C" is coming up - soon (cringe!).  Well, while channel surfing a few days ago I saw a couple trying to sell their house.  The important thing is that after a not-so-fantastic house appraisal the news station gave the couple a to-do list to be completed within 48 hours.  I saw that list and drooled!

That's it!  I'm going to start writing a list of things that MUST get done during the weekend, but very easily obtainable goals and not put down "peace in the Middle East" as a weekend goal.  However, taking in the potted tropical plants into the house for the winter and decluttering 15 items of the obviously no-longer-worn to donate is, I believe attainable, and will be on the list. 

And so you have my Friday Tidbits!  I do hope this list will be a good inspiration to some, or at least a great chuckle!

Here's to everyone having a fantastic (and productive) weekend.  I most certainly hope that everyone's feeling their very best, only better.  Ciao and paka!


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Note: above image from Polyvore.com and pinterest.com.


Tuesday, March 27, 2012

My Hair and Beauty Outings...

Don't we all want to come home from the hair salon looking like we did in our 20's?


On Saturday, I will hopefully have an appointment for my hair with a few other goodies thrown in. I've now gone at the very least eight months since my last hair appointment and I'm looking especially pathetic and old, gray and dull, not to mention "holy," which will become clear in a moment. I'm always worried about the whole process because of three reasons.



First: This visit has me particularly uneasy because I've been so sick that we've lost count as to how many appointments have had to be cancelled at the last minute.  I feel like a second-class citizen when I walk in after so many cancelled appointments.... I just hate being so unreliable. Really hate it.

Secondly, I must admit that I do have a real love/hate relationship with going in for my beauty adventure.  I always say, with no sarcasm or exaggeration at all, that I'd rather have a root canal done than go in for a hair appointment.  You see, my hair is very fine and thin...and getting thinner every day, unlike my body (groan).  About 15 years ago, I finally found a miracle worker in Pittsburgh, an hour drive well worth the "health cost."  I'm trying to figure out how my talented and imaginative Diana will attempt the latest challenge - a four-inch bald spot that resulted from the incident I had with my arm/hand back in November. She was already working around two other bald spots but they were just babies compared to what I've got going now.  I've been using men's Rogaine foam (I know it says that it's not to be used for women but I did some research and it looked kosher for my needs) plus Phyto vitamins for hair, something that's helped me in the past.

However, I am arming myself with pictures of when I discovered that crater, six WEEKS AFTER coming home from the hospital.  Did no one think to mention that I had this huge white scalp showing in the back of my head? Did they honestly think that I wouldn't notice it eventually??? Plus, because of that tiny problem of my almost dying a few times during that hospital thing, my hair in general had started falling out.  Anyway, I'll have those pictures for the moment Diana sees that huge hole in the back of my head and mentally throws up her hands and finally admits defeat. Poor woman needs some hope that this latest bald spot at least has a chance of growing back in. Should be interesting.

But going in for my beauty adventure is always an experience I dislike/hate for many reasons despite the fact that the women (and men) who work there are wonderful.  I love them all.  They are kind, not noticing how ill I am without appearing callous, yet never condescending nor unconcerned, yet at the same time appearing not to notice my cane. Hard act to do well!  Of course, I don't know what goes on behind my back, but  I do love two women there especially, Diana, the aforementioned hair genius, and my newest discovery, Lan, who does a beautiful job of dying what I have left of my brows and lashes so that they can be seen.  I must admit, however, that I'm so looking forward to Lan noticing the bit of growth in my brows from the hair growth products I've been using as religiously as a person with severe CFIDS/ME/Fibro can, and will be crushed, I know, if she doesn't see a difference.

BTW:  Having discovered dying of lashes and brows has really made my life a WHOLE lot easier - it eases and lifts my "self" beyond explanation.  Hubby, who takes me there and then runs errands for me between checks as to how I'm doing, doesn't understand why all this makes me feel so much better.  However, he can SEE what it does for my spirit and thus loves the whole adventure - certainly more than I do - and actually gets excited about it all, despite my acting like a grinch the whole way there.  Did I mention that irritating hubby is also the sweetest, albeit delusional, hubby ever?

Back to Lan: at least after she's done with me I have an idea as to where to go to fill in those brows with brow powder and can find my lashes to put mascara on...otherwise all is invisible or non-existent.  And since my eyes are so dry, I can actually get away without the mascara if need be and not scare any children who may cross my path.

Finally, going to the beauty farm is not an easy deal:

First, I have to feel well enough to get out of bed, bathe, put on some makeup, see how awful my hair is and SORT of fix it and then find something (other than a nightgown) to wear which fits my ever-changing body. This is major league for me.  By the time all this is done, because of the sweating, trembling, shaking, almost-passing-out factor, you can imagine me employing the "up, rest; up, rest; up, rest" method forced on me by my cruddy body.  This takes at least two to three hours to get through.  Come on CFIDS'ers, CFS/ME'er's and Fibro's, admit how hard it is to start your life each day, but especially when going out of the house!  And though we all have many of the same problems, we all manage to have different problems also, and so in the end, it's never an easy task.

Furthermore, there's that funny little annoying problem I have with sleep - the BANE of my existence.  My life has no pattern nor any predictability or reliability at all because of the sleep factor.  I never know WHEN I'll fall asleep, IF I'll fall asleep at all, for how long WILL I sleep?  And if I do happen to fall asleep, will it be an hour before I have to get woken up for the "get ready to go routine"?  Am I going to be "sick" that day, as in I'm so sick that I can't stop falling or there are huge ulcers in my mouth or any number of conditions that keep me a hermit?  I absolutely hate it when hubby sees me in the morning and the truth hits me as I see a certain expression on his face: I will not be able to go under any circumstances, I'm just doing that badly that day...no adrenaline will help, no painkillers. After so many years, he, as well as my kids, can read the signs, among them the blue or no-color lips.

People always say to CFIDS'ers, "but you don't look sick!"  We absolutely, positively and indubitably cannot stand those words.  We're sensitive about people believing us, so we all too often feel those words undermine our illness.  Furthermore, it IS an insult because we know that we happen to look like something you stepped into by accident in a cow pasture. We look horrid despite the makeup...often worse than at home without makeup, because we usually look like a marathon runner does at the end of a 25K race - not only are we all sweaty and clammy, but our hair is absolutely wet, precisely because it IS the equivalent of a 25K run for "us."  For you non-jocks out there, imagine how you'd feel after a marathon.  At the finish line line you'd be breathing hard, sweating, legs feeling like jell-o, nauseated and so forth.  That's just a bit of how I feel before I reach the front door to go out.  Now that I think about it, perhaps it's a good thing that we have an hour drive to the salon: it gives my body a chance to rest before the fun really begins!

And finally, you've spent the week before doing absolutely nothing, trying to built up what I call "health credits."  If you don't put away those books lying around your room, you get x amount of health credits.  If you stay away from the garden, if you refrain from taking a bath, washing your hair or your face but so many times in the week before (never in the week before, if I'm being honest about it), you earn another unknown amount of health credits. You're constantly thinking about those darn health credits - or being reminded of them by a family member should you forget - in everything you do.  Normally, I rarely go downstairs to the kitchen, living room, etc., areas, but the week before a doctor's appointment or a beauty adventure, I absolutely NEVER go down there.  I need to save up those health credits.

I'm excited but scared....each and every time.

So, until Saturday, I'm living on tethers, hoping against hope that this week I WILL make it to my hair and beauty appointments.  I'm eating as healthy as I can, trying not to allow anything upset me (ha!), focusing on the positives (sorry, but another ha!), saving up as many health credits as I can and using any other of the other weapons in my arsenal of getting out of the house for the day.

Hopefully, the team can make me look Bea-U-ti-ful! ;)