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.

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.


  1. Hi Irene. I've just discovered this through another person's Twitter feed when I followed them. I want to reassure you (as a fellow M.E/Fibro sufferer) that you are not alone as I also hang 'best' clothes outside my wardrobe in a vain attempt to convince myself I will wear them.
    Too much time in PJs must do something to our minds, I guess. Our attitudes toward activity and productivity have to alter to fit the changing circumstances. List-making and persuading my (ever-patient) husband into tackling the chores I can't do help me to have a degree of control over the uncontrollable. I love your sense of humour and positive attitude!

    1. Hi Joy! It certainly IS reassuring to know that I'm not the only one who lives in the "clothes fantasy" world! ;) Thank you for stopping by and reading and for the wonderful comments! I hope you return. See you on twitter! xx

  2. Irene,

    I found your blog today from a comment you placed on Adrienne Dellwo post on New Doctor Woes.

    I am so very glad to have found you. A big, very gentle hug to you for your humor about this wretched whatever it is, syndrome, illness, disease, whatever!

    You did make me laugh and I now have this humor to look forward!

    Thank you,


    1. Hi Judy! Welcome to what I think of as "controlled Insanity" here! (Joke!) I love that you found me somewhat humorous! ;) I'm so thrilled and thankful that you stopped by, PLUS wrote a comment. That's a whole lotta work and I'm impressed. Thanks for the big, gentle hug... I needed that! I do hope to see you here more often. Thanks for your kind words!
      Irene xx

  3. When I was waiting for diagnosis and was housebound for 6 months (with the exception of countless doctor's visits), I developed an affinity for art glass. I figured I could at least look at pretty things while staring at the same 4 walls. I also started collecting Swarovski pieces (particularly the Paradise fish and bird collections). They're still very pretty to look at but, I would like to sell some stuff. I kept all the packaging including the sales receipts (especially for pieces purchased from galleries). Unfortunately, I don't have the energy needed to pull the paperwork together, take pics, post the pieces on sites, etc.

    I also started collecting purses. I could open up a shop what with the quantity of purses, wallets, etc. and some things still have their tags attached. Not sure what the hell I was going to do with all those purses -I guess wear them in my bedroom?

    1. Almost forgot (thank you Fibro brain) - I also have SO much makeup that I could be a makeup artist...if not for the tremor I get from the migraines. Although, I could still do it if a client wouldn't mind getting poked in the eye by a mascara wand. ; )

    2. I often think that these "buying sprees" that we can find ourselves in the midst of are driven by some sort of wish that we could have more control of our lives. In the end, of course, we end up being burned, but I see this a lot and not just with CFIDS/ME/fibro. And the purses! At a very awful stage I did do that, ordering from QVC, absolutely convinced I needed every single one of them (disregarding, like you, the fact that I had more than enough and where would I wear them to, Bed? ;)) Ever-patient hubby almost lost it because the boxes kept arriving and he kept returning them!!

      You have a wicked thought true humor with the mascara wand in a client face. I do so hope you get some help on the migraine front! Xx

  4. I had my first Botox treatment early in August and am going for the next session in November. It consisted of 31 injections - which stung A LOT. It's odd not being able to lift my brows and my forehead looks shiny even though it's not oily. There's not enough mattifier in the world to make my forehead look normal.

    Most of the oppressive pain that I felt in my forehead, right eye, and right temple is gone and I no longer have black spots in my field of vision. Unfortunately, Botox doesn't help with the blurred vision, dizziness, hand tremor, or the countless other symptoms. That's disappointing. But, I'm very thankful for the relief from throbbing and piercing pain. I'm also thankful that the insurance company paid for the treatment (the EOB shows that Horizon paid over $1000 for the units I received).

    1. Oh my! You are the first person I've "talked" to about Botox treatment for migraines. It certainly sounds like a mixed bag. That's really a lot of injections - poor you! On the other hand, you're in a desperate situation. I'm so glad to hear you're getting some relief but so sad to hear that there are still so many other problems. In my case, I get pitocin shots daily to help the blurred vision and they've made a big difference in that part of the problem, Meclazine for the dizziness and vertigo. What a mess, no? And yet we worry about things like shiny foreheads! ;). Feel better. You're in my thoughts, Labyorkie! xx

  5. I took the doors of my wardrobe (well no actually I didn't) to see all my clothes and shoes. There is a dress that I bought for a christening hanging up on the outside though that is starting to taunt me now though. Hope I get to go. Glad other people get the shopping spree thing (well not for our bank accounts). Usually though it's books, which are of course of use but let me loose on a clotheswebsite and that's it. X

  6. Wonderful collection of fashionable dress and accessories for women. Beautiful dress looking very amazing and cute.Specially bag and shoes are really standard and good looking. Thanks for sharing such post.