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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.

Friday, September 14, 2012

Friday Tidbits: Help and Fun

Easy reading for fibro-brain!  And so much fun.
It's Friday and we've all survived another week! Yay! Hopefully everyone's health and family crises have been at a minimum. 

I've tried to start a Friday piece that would come out each Friday (imagine that!) but it's difficult to commit to anything when you're sick with CFIDS/ME/fibro and the dozens of other problems that tend to plague us.  There's always severe insomnia, migraines, Fibro-brain, and a hundred other problems that get in the way - indeed, often simply surviving seems to be miraculous.

But I've finally decided that if it's possible to do so, I'm going to give it a try.   It will just be quick observations or tips of any sort or anything that I've thought of during the week (or month!) but somehow never got a chance to mention. I've held off on any kind of commitment but have finally decided that if on some Fridays I don't get around to writing a post, who but the CFIDS/ME/fibro and spoonie communities will understand, right?  You've seen a couple of attempts so far and I'm going to keep the title "Friday Tidbits." We'll see how it works out.  So here we go!

  • For about four days this past week I came down with very itchy skin on areas around my left leg.  It was the sort of itchiness that was actually getting to the point that the scratching was making it raw and I was beside myself.  To complicate matters, it was my left leg that was affected and that leg has a lot of numbness, the sort that you feel after the dentist gives you a shot of novocaine and it starts to wear off, yet the nerves are still not completely revived - and then you accidentally bite your tongue.  (I certainly hope I'm not the only person who's experienced this!)
At any rate, after just one evening the knee was raw, but after four nights, the back of the knee, above and below the knee were starting to look scary.  The antihistamines I take prophylactically for hives were not helping at all.  Then I finally realized that my air cleaner was off!  I'd written about this air cleaner before and just started laughing, thinking, "you got that one right!"  The electricity had gone off in the house for a second and that was long enough to stop the air cleaner.  Within a day of turning the air cleaner back on, the itchiness disappeared - like magic.  If only most of our problems were dealt with so easily!  But it shows just how much that air cleaner really does help some of my problems, and not just with the skin but with breathing and a tiny list of other problems I don't even realise until something goes wrong.
  • There is definitely a bug of sorts going around town and I'm glad that I have a clock/thermometer next to my bed as my body temps start to go into serious yoyo mode.  I get clammy, I get hot, I get cold, I get chills, and so forth - this and more, all within minutes, repeatedly.   At least when I look at the thermometer I know it's me and not the room, one less factor to consider, as I discussed in a previous post.
  • And finally, a bit of fun to get us away from all this sickness and to just enjoy.  I'd recently mentioned (ha!) that "Project Runway" is the show that hubby and I look forward to each week, almost a guilty pleasure. 
And Mondo was back as a judge last night!

Oh boy. Last Thursday's episode, the team efforts, reminded me of every wedding or other occasion that I've attended as far back as I can remember when you got a bunch of Russians and Ukrainians in the same room.  (As I shake my head and huge eye-rolls start in.)  Dmitri and Olana reminded me yet again of the nightmare seating chart at our wedding and the saving grace the Italians were because the Russians sat on one side of the Italians and the Ukrainians sat on the other side of the Italians.  But that's all besides the point.  (Of course!)  

I've been in love with Tim Gunn, the would-be designers' guide on "Project Runway" for years.  He's such a kind and optimistic teacher/mentor, in addition to being brilliant, a gentleman and almost a lost breed.  His new book came out on Tuesday and it's so good that as soon as I received my copy from Amazon, I immediately ordered a copy for my BFF.  Tim Gunn's Fashion Bible: The Fascinating History of Everything in Your Closet is just great fun to read.  I'm still having trouble reading and it continues to shock my family and very close friends (Irene without a book in her hand???) but this is great for me at the moment (year?) because I can pick it up and put it down. If I can't concentrate because of pain or because of a problem that needs to be addressed, it's no biggie.  There's nothing you have to memorize (as in a plot).  It's all just fun reading - and feeling as if Tim Gunn is there beside you telling you these fascinating tidbits of fashion history, weaving it all into a brilliant story.   If you want something far from all your troubles, this may be the ticket.  And I've already come up with an idea of something that might help me with a problem I'm having with my legs...I'll keep you posted.

I always feel that you never know when, where nor how you'll find something that helps you deal more easily with your health problems...or life ones also, for that matter.

At any rate, hoping all are doing the best they can be, only better.  Have a great weekend, ciao and paka!

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