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.

Saturday, June 30, 2012

Malaysia and CFIDS Travel (with 3 beauty tips)

Looking outside my balcony.
What people - friends, family, doctors - don't seem to realize is just how ill we with CFIDS/ME/fibro truly are, and with me, at least, it IS my fault to a certain degree. I don't know about others, but part of it is that I just can't seem to be able to allow anyone to see me at my worst. I just have this strange thing about people seeing me when I'm so ill and looking like death warmed over. In a hotel, for example, I won't even allow housekeeping to come in to change the sheets and towels on my bad days and I am a fanatic about sheets and towels - ask any one of my college roommates!

Not surprisingly, the hallmark of this dreaded disease, post-exertional malaise, has hit me hard, really and truly stepping in, full blast, three days after arriving. The ulcers in my mouth were out in full force even on the first planes and by the time we were in flight from Tokyo to Singapore, it was almost impossible to even swallow water. (Hopefully, I'll soon address this CFIDS/ME/fibro problem in a post.) Now my muscles are aching to the point where I don't even know how to describe the pain. My eyes are burning, red and raw just because...because they ARE! My lips are blue turning to white, and just the thought of moving from the bed to the balcony or bathroom makes me want to cry.

You who have CFIDS/ME/fibro know exactly what I mean. It's not crying like a baby or spoiled brat, nor even the tears of anger or anguish. It's involuntary tears flowing because you know that there is much that needs to be done, though you try to tell yourself that constantly thinking about it will only make things worse and desperately try to convince yourself that somehow things WILL get done. The only chance you really have of recovering from "overdoing it," in order to "overdo" it yet again, to function enough to participate in a huge/important function, is to let go of thoughts of things that need to be done and mellow out. Yet this is almost an impossibility because so many of us are Type-A personalities. And so, Fibro-brain, the partner to pain, excruciating fatigue and all the rest, definitely slips in - in my/this case, the day I started this trip - and like a little terrior won't let go.

I'm in bed, but am I resting? Of course not! In the back of my mind there is a never-ending computer going on saying, "if you do this, you won't be able to do that!" every step of my day and night, constantly recalculating. It's not obsessing, I hasten to add. It is a complete necessity if I'm to survive - but it certainly is tiring.

On the bright side, I hope that I have my fall over and done with. You see, ever-observant hubby has always said, "you've fallen in all the great cities of Europe!" as described in the noted post. Now he can say, "you've fallen in almost every continent!", as described in an earlier post.

Yesterday was devoted to shopping for a dress for me as mother-of-the-groom. Given that my Viking blood coexists with my Mongol blood, it was quite the hunt. I'm almost 5'8" and ugh! - I've gained at least 10 pounds since I left home. Somehow I always think food will cure whatever ails me, and I've been, let's say, doing a lot of curing! Thank heavens I brought quite the selection of shoes with me since I doubt that even Asian drag queens would have feet as quite as large as mine.

But back to the fall. Yes, "the fall" with a deepening of the voice as you say it (Ha!): "The Fall." My son and his bride-to-be were trying to meet up via their cell phones in the mall and so I decided to sit down on a bench. Kaboom! I went crashing onto the floor, somehow miscalculating how long the bench was. My son was so shocked that he just kept talking, offering no help, as if he were watching this on TV instead of in person.

So, add yesterday's intense going out experience to my not having rested enough from the whole getting-here-fiasco with cancelled flights, etc., and I'm just dead.

I sit in my hotel room and am sooo mad at this stupid illness. I want to go see places. I'm in Asia, for heaven's sake, a continent I never expected to visit. With Malaysia I'm in a beautiful corner of the world and there are so many sights to see. Particularly I enjoy seeing how hard this country is working to turn itself from a developing country to a country that wants to be counted in the world.

There are such beautiful sights. Last night I was able to take pictures of a bridge I can see from my balcony. It changes colors every few seconds from red to blue, purple, green, aquamarine. Each district, as you drive through, has its own unique lamppost so the driver always knows which district he's in. What a cool touch!

I know that what always happens will happen here too. Even though I've been to Australia three times, I saw almost nothing. Here too, this will happen.

Don't get me wrong. I am so thrilled to be here. And it allows me to breath easier knowing where my son is, although he works four hours from Kuala Lumpur. Still, I'll have some sort of idea, some frame of reference. Better yet, I'll be able to meet some of his students and colleagues at the wedding. I'll now know who is who when he writes to me to tell me of a funny incident or whatever...I'll now be able to put a face to the name.

And to complete the happiness, hubby was able to reschedule his work so that he could fly here for the wedding, and spend a couple of nights here before heading back!!! Consider me jumping for joy in my mind, though I must admit that when I DID see hubby coming out of the security area into the lobby, I found myself jumping for joy. This is just too big an event to not have the father of my child standing beside me.

At any rate, I just have to figure out how I can trick my body into believing it's up for a wedding. But not to disappoint, I am including a bit of beauty tips:

  • I put on the Omorovicza illuminating moisturizer (no tint) the other day and liked it well enough, but wasn't IN love, though I'll continue to play around with it. I'm seriously considering getting the Laura Mercier illuminated tinted moisturizer. I hadn't realized that there were now two LM tinted moisturizers, the normal one and now the illuminating one. The regular one, which came out ages ago, just did not suit but I think my skin is in better shape now than it was, say 10 years ago, so I'm rethinking the tinted moisturizers since it IS summer. (Granted, because this DD has made it hard for me to make any decision, I might not make a move on that until NEXT summer!)
  • I used my Dr. Jart+ BB cream and loved it. We weren't out in the sun - like an MS patient, my body simply cannot tolerate the heat and sun exposure - but the BB cream went on very nicely and didn't feel heavy, yet evened out my skin tone. And, of course, I'm madly in love with the SPF of 50! The color blended in very nicely.
  • I'm in love with my new Clinique Cream Shaper for eyes. I tightline the brown I use, and it's a more subtle look which makes your eyes pop. For an idea on how this can be accomplished, my pinterest board shows a picture of how it's done here .

I hope everyone out there is doing as best as can be, only better! Till next time!


  1. I feel for you Irene! I think you are brave for traveling at all!! Don't know if I could/would do it. Maybe with my girls when they are adults cuz they "get" it about CFS and will baby me. I think we all understand the guilt and shame we undeservedly have about having this dd, therefore feeling compelled to try to hide it from the world...

    1. Hi Judy! Yes! You have it right when you write about the "guilt and shame" we have, which "compels us to try to hide it from the world"! I just don't want this DD to take away any more than it already has and that meant including my son's wedding. But I hasten to add that I have an incredible support system. And I was so moved by his concern over how I was doing all day. Thanks for writing and for the validation!
      Irene xx

  2. Hey you,

    It sounds like your trip has been both tiring and exciting! I know exactly how you feel about not being able to get out and see the places you have travelled to, but it's great that you get to be there for your son's Big Day!

    Take care of yourself,
    Ruth xx

    1. Hey you, right back! ;)

      So happy to hear from you since it sounded as if you were going through quite a rough patch out there! Yes, I'm finding the trip exhausting but absolutely exciting. Everything I see is new and fabulous and it's incredibly wonderful to have close ones explain things to you. Thanks for your kind words. It's amazing how much more can be endured/accomplished when a few kind words come your way!

      YOU take of yourself!
      Irene xx

  3. Hi Irene,
    I came here to thank you for your kind words at Ruth’s about my garden, when I saw this post. I'm so sorry that you're not feeling well at the moment. It is a pity that you can't do all the sightseeing that you'd like to, but what's most important is that you're there with your son on such a special day. I hope everything goes alright at the wedding and wish all the best for you and your family. xx

    1. Hi Maria! I have been wondering how you are doing so it is wonderful to hear from you! Yes, I am so fortunate to have been able to fly out to see my son's wedding. It's been a fascinating experience. You'll be happy to know I even bought two books here, dealing with post-WW2 Malaysia. I can't wait to sink my teeth into them!
      The landscaping here is beautiful and it kills me that there's not enough energy to go to some of the famous gardens, but driving along highways you see many flowers...beautiful!
      Thanks so much for writing (and reading!) and I hope all goes well with your new garden. Please keep me posted on the progress! I do love all things garden! :) xx

  4. I followed u on pinterest, I'm sophisticat85 I think. It will only let me like, not pin tho.

    1. I tried to find you but didn't have luck. Will try again. I'm so techno-impaired, that it's embarrassing since I think people think I use it as an excuse or something! LOL! Thanks! xx