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.

Thursday, June 14, 2012

Priorities in family, health and beauty...

My "little boy" is getting married!
I seem to keep putting off the completion of my eyebrow miniseries but really, it ended up having too many loose ends for me to publish it just yet.  I am, however, surprised that these posts appear to have a high readership and I'd like to thank you all.  However, there's so much I have for the subsequent eyebrow post(s) that I'm trying to cut it back a bit and chop it into smaller posts.  And, of course, what further complicates getting the series done - with no other posts breaking up the series - is that I keep getting sidetracked by other CFIDS/ME/fibro issues...or just life!

On Saturday I'm planning to get my hair done again and was (selfishly) disappointed that Lan's away.  I'm concerned that the new person won't be able to do my brows and lashes successfully and of all times to not get the person who knows you???  You see - and oh how much I'm afraid of jinxing myself (KNOCK ON WOOD!) - but I'm about to go on a HUGE trip, something I would never in a million years have imagined doing at this point in my life. 

There's been a hurt and sadness deeply rooted in the last few years.  I, at some point, really and truly suddenly realized, more or less out of the blue, that traveling will no longer be in the cards for me: that I'd never get to climb to the top of the Sydney Harbour Bridge, that I'd never get to Alice Springs, nor would I be visiting St. Petersburg, or my cousins, for that matter, when the 2014 Olympics in Sochi start, so close to where my cousins live.  To show you how badly I do when traveling: hubby and I decided to do the simplest of vacations a few years back at a resort in Arizona that even had horse-back riding.  Well, it was a disastrous seven days, with me as sick as the proverbial dog, with one health problem after another: I broke out in angry red hives, I broke a tooth biting into my room service hamburger, and I've long ago suppressed all the other things that went wrong.

And yet, just as I had, in the last few weeks, resigned myself to the fact that there wouldn't be any more "exotic" vacations/trips for me, I was told by my middle child that he's getting married and soon AND in Kuala Lumpur.  And though he never expected me to be able to be there, worried about my health, I, in turn, couldn't imagine NOT being there.  So, in a frenzy, hubby spent a few days trying to locate my passport (remodeling strikes again!) as I tried to figure out which route to take, the dates involved, which airline(s) to use, how to swing it all financially. Finally, after a couple of days and nights of no sleep (what else is new, right?) my brain finally gave in, turned off the malfunctioning sleep switch and I was able to take a nap.  When I woke up, hubby had found the missing passport (it was exactly where I told him it would be!) and had booked a flight for me for my trip.  We both knew that every bit of damage done to me in this latest adventure of mine will well be worth it.  Besides, I would never be able to live with myself if I didn't do this.

And this SHOULD be quite interesting.  I'm traveling alone, since there are a few serious family crises/issues that need addressing (Murphy's Law!) plus hubby is not able to leave work at the moment.  Consequently, I'll have to rely on the airport people to meet me at each gate with a wheelchair and to get me to the connecting flight in time (with no time at duty-free shopping?  Just kill me right now!).  Hubby bought me business class tickets because we know that this will be a major shock to my system (I'll be running on adrenaline, which has not kicked in yet for the packing...). I'm just so weak and lethargic, my voice a croak, my muscles aching and so forth, but hopefully business class will make things go a bit more smoothly.

In general, CFIDS'ers shouldn't even be flying much at all and I have long wanted to post on this topic alone, but I'm still doing research.  Going by past experiences I know that this trip will keep me in bed for a couple of years since each time I've done this sort of insane thing, I've returned home with some new sort of nasty "thing" that no one could have foreseen and run down beyond comprehension.  But I don't really mind: it's always wonderful to spend time with my children, no matter where they may be in the world! (That sounds as sappy as an answer in a beauty contest!  Sorry!)

So, my boy is getting married and I cannot imagine not being there!  (I just had to repeat that because I'm still trying to get used to the idea!)

In order to get my engines revved up, yesterday and today I've been reading as much as possible on making travel easier, as well as "stalking" YouTube.  I'm following advice from Ruth the model, Sali Hughes of The Guardian, makeup artist Lisa Eldridge, as well as others: they are now my guides, my inspiration in all things packing and beauty.  And perhaps the best of their tips: how to do a great DIY beauty routine on long-haul flights!   Considering I have twelve time zones to get through, I have a feeling I'll be able to do several treatments.  But packing?  That is going to be a challenge since I freely admit to the universe: I am an awful packer.  My son immediately notified me that I can buy anything and everything I want/need in KL...having traveled with me too often and knowing just how much luggage I can lug around, often borrowing parts of others' suitcases. (Sadly, true!)

And there are so many things to take care of, as a person with a chronic illness.  Although I have an almost pathological fear of flying, for the first time ever, I'm actually looking forward to the flying part of the trip because I look forward to the DIY beauty routines.  I may even get adventurous and fool around with makeup, who knows? (Joke at my expense!)  Though I am a bookworm, I've never been able to read on a plane, not even the truly awful magazines my daughter seems to buy in bulk for travel, which take very few brain cells to comprehend. I feel as if I'm in a straitjacket when flying so I have high hopes for the DIY spa experience to make the time go by faster.  And I'm now carefully selecting/packing/agonizing over what should be in my carry-on (all meds, of course, but which skincare products, which cosmetics?), what is the proper size of the check-in bag and its weight, questions like "do I actually lock my suitcases since they need to be inspected along the way," yet it's scary not to lock them?  I'm also trying to figure out exactly what the restrictions for carry-ons in general are all about.  And I must not forget to pick up the letter from my doctor explaining to customs which medications I'm on and why, in order to not get thrown into a prison, never to be seen again. I also have to figure out how to give myself the HGH shots.  Eek!  I've never done the whole process myself: the few times I did the injections, the needles were already loaded. Plus I need to figure out how to carry my meds refrigerated for such a long time and distance. Finally, I have to make sure that I have enough meds to get me through the time away: some prescriptions will most likely end on a day I'm away, so we need to work with those concerned in order to insure that I have the doses needed.

So, getting back to hair, lashes and brows.  Although I don't have an appointment with Lan, I do have an appointment with someone else to do my brows and lashes.... And I truly need this: a) to deflect from my age spots (hyperpigmentation)  and b) I don't know how much makeup I'll be able to handle in KL - it must be murder wearing full warpaint in an area where the temps hover around the 100 degrees mark (we ARE at the equator, after all) with very high humidity to boot. I most certainly need those brows and lashes darkened in order to not scare any child unfortunate enough to cross my path.

I have a week before I'm off, so if anyone has any brilliant ideas to make this trip safer, easier, even feasible (!) please let me know.  The airlines change policies so often that it's hard to keep up. I worry about the water factor. I used to bring an entire carry-on with water and when I finished that, I'd then start asking the flight attendant for water. I actually had one refuse me water, saying I'd had two people's quotas!   So, there's a concern for you!  CFIDS/ME and water, after all, go hand in hand!

Another part of me fears a repeat of what happened at my daughter's college graduation.  Just as the class was coming in, accompanied by absolutely beautiful and stirring music -  I was being carried out because I kept sliding off the chair and "semi-passing out" (the HGH approval was moving very slowly though "the systems," the "t's" not yet crossed the "i" not yet dotted, so I was basically dying at that point and had to be hospitalized as soon as we got home).  I remember thinking the whole time, "at least it's just a graduation ceremony and not her wedding!"

Because of this fear, I'm arriving in Kuala Lumpur almost a week ahead of the wedding so that my long-haul plane ride will have been forgotten and my witty, charming self will shine through! ;)

If I can figure out how to blog from KL, I hope to give tips on traveling, or keep you up on events as they happen.  And I cannot believe I'll actually be in Communist China for layovers...in Shanghai and Beijing.  How I'd love to run out of the airport building and just take in the atmosphere for an hour or so, remembering very well when Nixon and Kissinger made the monumental steps of "opening" China.

Even when you're extremely sick with whatever kind of illness, it's difficult to give up those activities that you loved and learned as a child and have developed marvelous muscle memory for.  I love adventure, I love learning, I love people watching and I love my family.  It's difficult to come to terms with the fact that your can't do all the things you love any longer, just because of a lousy illness, or if doing them, doing them only in "heavy" moderation.  

But you know what?  Sometimes it just gets to be too much, all this hyper-vigilance over ourselves.  It gets to be a pain having to factor in what was eaten, what was said, monitoring anxiety levels, predicting pain levels, noticing every bit of minutiae which, as it so often turns out, is NOT minutiae at all but can often be the most important part/factor of your life, the one worth living for.  Because as I wrote in my previous post, I don't want to live in a cage, even if the cage is gilded.  To me, if the event is humongous enough and if it's well worth the price, I'll gladly pay later for all I've gone through.  And for me, my son's wedding is definitely worth the price, even halfway around the world.


P.S.  I went back and made a few changes to the original post.  My brain was definitely way too fogged up this morning when I typed it out.  Apologies to all.

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  1. I'm so happy that you're writing again.You help people more than you know. Keep up the good work and your spirit. I pray you have a wonderful time and trip, soon. Leo

    1. Thanks, Leo! The adventures for getting ready for the trip are already beginning...agh! LOL!
      Upa xx