Friday Tidbits: Factors in Developing CFIDS/CFS/ME and Fibro (Part 2)

 Oh how I wanted a horse: but it was not to be...think of all the falls and head injuries I managed to escape! 

Continuing my article from yesterday where I told y'all about a few of my childhood head traumas... I'm in the midst of trying to figure out which contributes more to CFS/fibromyalgia: trauma, genetic predispositions or.... We've discussed head trauma and are on our way through to genetics.

In 1996 my mom and I flew to Russia for a most extraordinary family reunion which I'll write about some day. While we were there visiting one set of very close relatives in the far north, we also wanted to visit another branch of the family, my cousin, in the (far) south.  Well, this particular cousin is my half-cousin if you want to get technical and in this instance, we do want to keep that in mind.  My half cousin is the daughter of my mom's half brother.  In other words, we both share the same grandfather.

Visiting my cousin was an incredible experience.  We planned on being there for two weeks.  She lives off the Black Sea and the Azov Sea, not too awfully far from where the Olympics will be held in Sochi. 
 
Keep in mind that in 1993 we had visited my cousin for one day and night (it was a two-day train ride from Kiev, each way!) not knowing when and if we'd ever see each other again.  In the course of the visit, it came out that I was ill with CFS/fibro. (I did look just a tad peaked when I got to their home.  My mom, in her 70's, looked like a teenager compared to me!)
 
So, when my mom and I visited in 1996, my cousin was determined that I would have a restful time and not do anything but rest, rest and rest some more.  And I did.  My cousin is ten years older than me and though she is one of the kindest people I've ever had the joy to meet, there is no mistaking that she is the matriarch of the family and what she says goes. (Sort of like my mom, me, my daughter....)

I rested, rested and rested.  Other relatives would come by and I was still forced to rest.  I visited with relatives and a few friends but there was an old cot set up for me in their patio-like area and I did most of my visiting from there.  My mom went on a few trips here and there, but I rested, too sick to attend a party thrown in our honor, and so forth.
  
In the course of the first week, I made an incredible discovery.  My cousin, it appeared, has CFS/ME and fibro! This was why my cousin had insisted on my resting so much, pampered me and knew what factors would be stresses.  I also learned some handy tips from her I hadn't known...like never taking a too hot bath or shower, because it is so debilitating. (This was ages ago and I can't believe I hadn't make that observation consciously.)  She monitored the water temperature like some dictatorial, though benevolent, water official!  I was served the freshest food around, despite the fact that oh so many in Russia and Ukraine were starving after the fall of the Soviet Union.
  
My cousin did not have the label of CFS nor fibro because Russia was having its changing into a "democracy" problems where people were dying of starvation - there were over 100 children who died in my cousin's city the winter after my second visit.  My cousin's family was spared because she had two goats (for very rich milk for her grandchildren), chickens and jars of canned goods, food she'd grown in her garden, not to mention the many American dollars we gave her to split amongst the various family members. 
 
As I looked around me at how hard her life was, it saddened me to no end.  This was a time when no medicines were manufactured in Russia.  From home I'd brought as many basic medicines as I could fit into my suitcases.  Even Tylenol was a premium med not available at the time.
 
But I still had a hard time seeing my cousin so ill.  She had no choice but to run a "household," a word that meant taking care of not just the house, but the chickens, goats, garden, all those things that you absolutely have to get out of bed for.  

I discovered that a few times a year she would have what we would call a "flare" and she'd be in bed for a couple of weeks while her daughters would come over to her home and would try to take care of the basics which couldn't be ignored.

She had absolutely no help on the medicine side.  But what I found fascinating is that she had the opportunity to go to a sanatorium for a week or two each year.  This, hard to believe, was not state-funded but private. How, why, I don't know.  But each year her family would chip in and somehow get the money for "mom" to get away for total rest and relaxation.  They all felt that this was the only reason she was doing as well as she did and was, for all practical purposes, still alive.

As the time went by I discovered many things.  I learned that my cousin was very healthy until (OK, this bit will sound like some sort of really bad joke!) a tank part fell on her head where she worked in a factory that put together - well, you guessed it, tanks. You did not want to get her started on the whole "tank" thing, quite aside from the unfortunate "accident" she'd had.  No meds in the former Soviet Union?  "Why?" you may ask. Well, it's because the USSR felt that tanks were more necessary than meds, which could be produced in other, Soviet bloc, countries.  And the number of tanks?  Evidently there were enough for each adult and child in the former USSR and with some left over! She's one feisty woman, that cousin of mine.

I have no doubt that my cousin had excellent medical care, despite all the jokes at the expense of Russia's medical establishment.  I was there when there were a few small medical crises as well as a couple of near-fatal ones in Perm - in the far-away north - as well.  Doctors really cared. They may not have had the basic medicines and testing equipment, but their common sense was honed to a fine art and what we call "alternative" medicine or even "old women's medicine" was used if they thought it would help.  They even made house calls, as I was shocked to see. 
 
The doctors wanted to do a spinal tap on my cousin a couple of years before I ever entered the picture.  I had had two of them with abnormalities appearing in the spinal fluid.  I often wonder what my cousin's spinal fluid would show but I don't blame her for not going that route.
  
So, do I think there is a genetic component to CFS and fibro?  Probably. Given a set of circumstances, there is probably a genetic predisposition.  

Do I think that head and neck trauma can contribute to fibro?  Oh, you betcha.  A resounding "yes."

I also realized that my cousin had a luxury that we don't have.  Aside from the food crisis (which can't be underestimated), there was so little stress in their lives.  For example, they didn't use a washer or dryer and I could see that in adding washers and dryers into our homes, we've used that time and energy saved into taking on more things, obligations, commitments if you will, many of which are stressful.  Think of how stressful life has become with cell phones alone, though I'm sure that the younger generation in my cousin's town all have cell phones by now.  In fact, we've even skyped a few times.

I ate three fresh-food and delicious meals a day with little activity.  We were in the midst of a heatwave, with 112 degrees the entire time I was there - and no AC - though there was no humidity.  And yet I who cannot tolerate anything but 70 degrees anywhere at all, managed to come home 15 pounds lighter, looking a decade younger when hubs picked me up at the airport and feeling the best I'd felt in ages.  It was such a successful visit, health-wise, that hubs often suggests that I go back and visit.  Unfortunately, life gets in the way. 

But, just thinking....and observing how things are.  I think that in addition to trauma and genetic predisposition we really can't rule stress out either. 

As always, I hope all are doing their best, only better.  Ciao and paka! 


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Friday Tidbits: Medicine 21st Century Style

The Offensive

It's been an awfully odd week. I finally felt well enough to go and see my GP.  It was a long appointment as we made plans as to how to attack a "new" problem I'm having.  This is the latest development in what I call the "something new is majorly wrong with me" problem that I've been concerned about for about two years now. We've been distracted from this hunt because of a few red herrings that got in the way, among them the compartment syndrome surgery, pneumonia, gallbladder surgery and abnormal mammogram.  We talked and planned as if it were all a military operation, deciding which specialists I need to see.  Before, it's been, "see this specialist to put out this fire, another one to put out another fire."  However, we all now realize that we need to actively go on the offensive.  Putting out fires is no longer acceptable.  Because of the military feel of strategic planning, as well as well as the red herrings, my mind thinks of this as "The Hunt For Red October."  It is just so much easier to give it a code name because "the figuring out what new majorly new huge problem is" is just a wee bit overly-worded.

Part of me is happy that we appear to now start planning by going on the offensive by making appointments. On the other hand, the realistic part of me is a bit anxious because I know that no matter how much I plan it all out, no matter how many appointments are made with doctors who have carved out times in their schedules to accommodate me (calling in favors) I will end up having to cancel some appointments - and that is not just embarrassing, but it also makes me feel like a second-class citizen.  For example, I'd made numerous appointments with my gastroenterologist and over the last two years I've had to cancel each of about five appointments at the last minute. I become so sick that were the house on fire, I wouldn't be able to allow anyone to haul me out of it.  The pain is just so bad that I can't allow anyone to be in the same room with me, much less touch me.   How does one ever explain this sort of pain, exhaustion, brain depletion, nerve sensitivity, and so forth that is the legacy of CFIDS/ME/CFS and/or fibromyalgia?

So, this is one huge problem. As optimistic as I am, the rational, practical voice in me says, "this I have GOT to see!" as in "how in the world am I going to be able to see all these doctors?" I need to see about five or six specialists at this point, PLUS get my breast biopsy.  Huh?  Really?  Seriously?  Good grief, I'm still recovering from the gallbladder surgery.

In the end, my GP, hubs and I did cover some of the realities of being ill in the 21st century.

• We lamented the fact that one can no longer be admitted to the hospital and have all the consultants come to see you. We remember the days when all tests could be run during your hospitalization, all in one big fell swoop.  Back in the day, the consultants would run into each other in the hospital cafeteria, the X-ray room, or corridors if they couldn't manage a brainstorming session. What now takes months and months to accomplish could take a week or less if it were done with a hospitalization.
• We lamented the fact that acute health problems like saving the life of a shooting victim or a liver transplant is done so well, but chronic medical problems are woefully badly done.  Everything is so wrong!  I had great care when I had my compartment surgery but because of my CFIDS/ME/CFS, fibromyalgia, insomnia, migraines, I could not make it to the hand therapy I needed, once released from the hospital.  The plastic surgeon could not understand that if he wanted me to have several months worth of tri-weekly sessions, they needed to be done at my home.  I couldn't begin to explain to him that even if someone came to the house I might not be able to handle talking to a hand therapist, much less have him touch me!   Forget the fact that all my organs had fluid around them (anasarka) and the urine in my bag was brown because the tissue from all my organs were breaking down (rhabdomyolysis).  Forget that I needed two blood transfusions to stay alive.  Forget that I had renal failure and pancreatitis. They STILL wanted me in the office and felt I was being difficult and non-compliant in regards to hand therapy.  (Note: I was released from the hospital too early and THAT'S why I ended up with the almost fatal conditions, rushed to another hospital less than 24 hours after coming home... in what world is THAT cost-effective?)

Yet when we said we'd pay privately for any hand therapy at home, the surgeon's office said that at-home therapy was "not in accordance with our business plans."  (Oh boy! Hubs still sees red every time he thinks about the hypocrisy and rigid thinking.)  Twelves months on, I have severe nerve damage and the inflammation in my hand is often not helped by anti-inflammatories. Oh those spoiled prima donna plastic surgeons.  You didn't see Dr. Hunk General Surgeon acting this way with my gallbladder.

• And finally: we think we have a large chunk of the falling problem solved.  Perhaps you recall that I'd spent quite a bit of time passing out and crawling about, not being able to walk even the six feet between the bathroom and my bed without hubby's help.  It turns out that the muscle relaxer I need was changed to the generic and THAT was a great deal of the problem.  The scary part was also how LONG it took to clear the generic muscle relaxer out of my system.  I'm back to my name brand muscle relaxer and after six weeks, the falls are almost gone.   I do have trouble walking around but much of that is due to the gallbladder surgery and whatever this new "Hunt for Red October" is about.

The day after seeing my GP was more difficult than I've had to undergo in ages.  I see that after going to see my GP a couple of years ago and describing that I'd developed a new pain, he thought that my pain was just like any other.  Because of the stress of the visit (and the side visit to the mall for new glasses) I ended up in the ER with the surprise diagnosis of gallstones less than 48 hours later.  After seeing my surgeon on election day, plus taking the time to vote and run up to TJMaxx, I ended up so sick that I was in the ER just two days later.  After this latest visit to my GP, within 24 hours I ended up calling hubs at work and having a melt-down because the pain was so bad, but I couldn't endure even the thought of another ER visit, knowing how I would be treated for an "invisible illness." 

So, I want to know, how, exactly, will I survive all these visits to specialists without being killed in the long run?  I wouldn't think that under the circumstances, a hospitalization would be stretching it.  But alas, the hospitalization for a good workup in order to get everyone on the same page and to establish what is going on has gone the way of the doctor's house call.  I think a large part of the population out there with "invisible" illnesses knows exactly what I mean. Yes?  Comments welcome, as always.

And that's it for the week.  I hope everyone has a truly great weekend, feeling their very best, only better. Ciao and paka! 

Life: "A Candle In the Wind"

Need anyone really say more?

The other day was such a particularly bittersweet day which reminded me of what I've lost and found since those weeks when I came down with the flu that led to my eventual debilitating CFIDS/ME/fibromyalgia back in 1975.  My daughter was able to go to the Elton John concert in our small hometown.  (What he was even doing in our tiny town I've YET to figure out!) I was thrilled to know that said daughter was able to make an Italian dinner for friends in her own home. I am, of course, still traumatized by her recent health crises, worried that teaching all day, then running to the store, running a few other errands, cooking a meal for guests and going to the concert would be too much for her, especially since we're all still trying to get over a bug that's going around.  I know that it'll take me a few years to see my daughter - ay! not to jinx her! - as returned to good health.  Her dad and I still always jump the moment the phone rings.

But the bittersweet part? I almost hate to write this because I feel as if I'm a rotten and selfish mom for saying anything at all, but Elton John DOES bring back so many memories, and! in the end, a bit of sadness too.

When I moved into my freshman dorm, I discovered, in addition to a lot of other things (ahem) a entire new range of music.  My tastes in high school had been more along the line of The Carpenters, though a very good friend did try to enlighten me with Simon and Garfunkle's "Bridge Over Troubled Waters" album, which, to my credit, I eventually wore out and have lost track as to how many versions I bought, including 8-track tapes!

But it was such an incredible surprise that one of my roommates not only loved music, but had an elaborate stereo system.  Yes, that admission of a "stereo system" DOES date me - if the "8-track tape" thing hadn't already!  What dates me even further is the collection of albums (ay! yes, vinyl round records - some of you might need to look all this up on Wikipedia!).  She had The Who's "Tommy" album and Santana's "Abraxas" album, among other gems.

We were a generation surrounded by great music, which started in the late '50's and culminated in the mid-70's and it was yet another reason to be in "seventh heaven" once I got to school.  Hubby and I often say how sorry we are for this generation's music because, sorry guys, our music was the best ever!  It's such incredible music that all who have followed us have taken our music as its own too - much to our outrage and chagrin.  WE never claimed OUR parents' music, after all, nor wanted to. However, we HAVE come to realize that we must share.

You'd walk into the student center and the smell of 2% beer (vs. the full-blown 4% beer) allowed to 18-year olds by the state of Virginia would assault your senses as Rod Stewart sang about "Maggie Mae."  As my friends would get that almost-forbidden beer, I would outwardly bemoan the fact that I was only 17 and couldn't drink ANY beer legally, though secretly happy I didn't have to as the smell of it made me quite nauseous.  Wonderful memories, truly!

But the music I loved most was the album that blared the majority of the time out of our dorm room, played over and over again.  It was the singer and album I most connect with in those first heady months of freshman year: the newly-discovered Elton John and "Your Song," in particular.  I'd find myself listening to the words as I worked on a calculus problem and my 17-year old self couldn't help hoping that one day someone might love me that way too.

It was quite miraculously and unexpectedly that I did find that love - to put a "hokey" spin on things. These days, whenever I hear "My Song" I find I have such mixed emotions. I realize that my hubby never knew me when I wasn't sick.  Oh I was able to hold down a great job for a while, at a publishing company I thought would only happen in my dreams.  But it was a puzzle to us both that hubby had to literally push me out the door each morning and on Fridays I would crash on the sofa in my work clothes and not wake up until Sunday afternoons.  I was able to have three wonderful children but each pregnancy and delivery was either a near-death experience or one fraught with complications galore.

To my ever-ending sadness, the kids never knew me as the "real" Irene/mom.

But there is one person left who does remember the "real" and "old" Irene. And what a blessing.  Without her occasional throw-away remarks, I too would have forgotten the "old" me.  I remember when "So You Think You Can Dance" first came on the air and my BFF said, off hand, "I look at the show and think, 'Irene could do that much better!'". Huh???

Or she'll mention my playing of the piano.  Years later, when the kids took piano lessons, I decided to go on and continue piano lessons after a long time away from the piano. What a disaster and what a reality check!  Fibro-brain had such trouble reading the music that I might as well have never learned it in the first place,  but most of all, my fingers, which were always so strong, could barely press down on the keys to make any sound.  Worse, at the time we didn't understand what was happening and I was simply disgusted with myself, my self-esteem lowering even further.

My voice, too, lost it's singing ability.  The muscles are too weak.  My daughter calls my smile for pictures "mom's fake smile," but doesn't realize that the muscles around my mouth are just too weak for a real one any longer.

This disease is wicked and cruel.  It puts you in the worst place in terms of health.  It robs you of your glow, your essence, your life as you knew it.  In some cases, it robs you of almost every happiness you ever knew, enjoyed or felt. Yet, ever so cruelly, it "appears" to make you look healthy - and I say "appears" because it does make us look weird or a bit "off" to the world.  Good grief.  I can spot a CFIDS/ME/fibro person anywhere I go!  To me, the signs are so obvious.  I only wonder, why aren't they obvious to healers?

So, VL, I'm thrilled that you were able to go to see your mom's favorite singer of all time, and know you felt badly for me.  And I loved that when Sir Elton sang "My Song" every fiber in your being wanted to hold up your cell phone so I could hear it live, only not doing so because you knew I wouldn't be able to really hear it.  And Linda, thanks for all the little casual reminders you unknowingly and innocently throw out every once in a while to remind me of who I really am, underneath this wretched illness.

In the end, I know that I'm blessed and I know I have a life I never even dared to dream of as a child.  I know that no one's life is perfect, despite all appearances.  Everyone of us has burdens we carry.  It's just that some of us have bigger ones or some of us have more invisible ones.  But no one gets out of life unscathed.

However, that doesn't stop me from wishing that I'd had a handle on this illness in the early years - or a diagnosis for that matter.  Had we known some of what we know now, perhaps there would have been a chance that I'd be able to go to our local supermarket or mall more often than about once every five years.  And maybe when Sir Elton came to our litte town, I'd have had the energy to see him and hear him sing my very favorite songs live.

As always, I hope all are feeling their best, only better.  Ciao and paka!

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!

Beauty falls: why I just HATE standing in line...

About the time of the fall...

This has now become, with the passage of time, such an un-PC moment, that my hubby and I still laugh about it.  Heck, we still laugh about it because it was also just so plain funny.


Back in the early '90's, hubby had the opportunity to speak at a conference in London.  Given that my most favorite city in the entire world is London, I wanted to do all I could to ensure that I'd be able to go with him. We'd basically never before traveled anywhere without our children, but for London, I was quite willing to parcel them out to various friends for about ten days. (And yes, they had to be GREAT friends to take on any one of my wild bunch!)


The tricky part, of course, was for me to stay well enough to travel, to actually look good enough to travel (many years later Qantas tried to refuse me entrance on the Sydney to Townsville part of my journey because I looked THAT bad), and to keep my body out of the hospital.  Easy task for some, but not for me. In addition to that, I had to keep myself well enough to fly on my own.  The "house rules" were that I wouldn't fly on the same plane as hubby since I've always had a completely irrational fear of planes.  My thinking was that in the unlikely event that a plane went down, the kids would have at least one parent left. Of course, the rules changed if the entire family flew: then we'd all travel together.  I felt that should the worst happen then, we could simply all go down as a family unit and, hopefully, have a jolly reunion on the other side.


Evidently, patient hubby and I had a wonderful ten days in London.  Because it really was a hardship (understatement?) on my mind and body, I don't actually remember anything at all of the trip but one thing...


We were starved and I'm extremely indecisive about what I want to eat if I get too hungry.  (More on that some other day.)  Loving hubby sighed, knowing what was coming and we finally agreed we'd eat in the hotel's little cafe.  We arrived at said cafe and stood at the entrance talking about this and that while waiting to be seated. Finally, very verbal hubby glanced in my direction - and realized that he'd been speaking to himself because I had disappeared without even a polite warning.


Surprised, he looked around, thinking I'd run off to the ladies' room and then happened to glance down, and there I was, crumpled at his feet.  I'd rudely passed out without a word of warning.  As hubby tried to get me to my feet, the maitre d' came running up to us, absolutely shaken up (I suppose they don't normally have patrons passing out on a regular basis!) apologizing profusely that he'd made us wait for him for so long - even though it hadn't been long at all - and directed us to the nearest table.  


In the meanwhile, I really, really wanted a cigarette - actually, I needed a cigarette.  I had suddenly started smoking just months ago, for three months actually, and then quit abruptly because it was all just so messy. However, when my doctor finally realized that the reason why my pain medication intake had gone down so significantly in the three months I'd stopped smoking (though we were all at a lose as to WHY I was suddenly able to take so much less medication) only to suddenly rise back to its normal amount again after I quit, he thought long and hard about which was the lesser of the two "rotten situations to be in" and decided that I should go back to smoking. In fact, he actually said that he never ever thought he'd encourage a patient to smoke, and very likely never again would need to give such advice, but I was a pretty desperate case. I really hated going back to that mess but was happy to have some pain alleviated, so back to smoking I went. I also worried about the example I was setting for my children.  But the kids were old enough that they understood mom's need for smoking so that became a non-issue.  They looked upon my smoking as a medication and not a vice and humored me when I would tell them to please leave the room if I were smoking, even as I kept air filters going on in my bedroom 24/7.  Of course, the funniest part is that I am allergic to the smell of smoke and there is only one brand of cigarettes that I can actually tolerate before IBS starts in - be it me smoking or anyone else.  Such a prima donna!


So, before the maitre d' could seat us, I said, "but is this the smoking section?"  The British are always so exquisitely polite that I really didn't want to put anyone out.  This was also at a time when Europe still looked at us Americans like crazy people because we were so uptight about the whole smoking issue.  A very distinguished professor even said to me, when I asked if he minded if I had a cigarette, that we Americans were so determined in setting the world's value system.  Couldn't argue with that - especially with such a wonderful Oxford accent!  

The maitre d', with the sweep of his hand, gracefully shifted his body to another table and swooped up the ashtray from that table, placed it on ours and answered my question as to whether or not we were in the smoking section by saying, "it is NOW!"  


That fall makes my list of my top five best/favorite falls of all time.


(Note: I'm no longer smoking!  But I still think this was a hysterical incident. It was a different time re smoking.)

Crying from my sickbed about another senseless CFIDS death....

Today I'm mourning the death of yet another victim of this monstrous and all too often fatal "syndrome" which too many doctors, health professionals and even friends and family are simply ignoring and/or, perhaps worse, refusing to believe in.  I did not intend to make this blog a place for downright preaching, perhaps because it turns so many people off of a topic that is often way too hard to stomach, and most definitely hard to understand and believe.  Today I'm crying because I've just learned about the death of a young woman whom I never knew, never even knew she existed, but have since learned how much she was able to accomplish in her short and tortured life: and make no mistake, she, as well as well as thousands, some suspect millions, are living a life of torture, for that IS what CFIDS/CFS/ME/Fibro is, "TORTURE." And yet she managed to somehow accomplish so very much in her short life, volunteering from her sickbed for the youth who have this illness as well as writing a guide to this illness for sufferers, a book which was well-received.  

After crying earlier in the day, I got angry.  I'm angry that this illness is still marginalized and I'm angry that funding is barely available for research and that the allocated funds in the past have also been "misdirected" to other places and mired in scandal.  It is disgusting.  Period.  Criminal.  Period.  Immoral.  Period.  Tragic.

Emily's family asked that the last letter she typed into her smartphone over a period of weeks when she still had strength be posted by anyone who cares about this illness.  Her words are so eloquent that I am proud to be able to place them here on my blog.  I am sorry for those of you who are uncomfortable with the "dirty" part of this illness, but this is one day that simply cannot be left to laughter.  

For those who would like to learn more about this brilliant young woman, the link I have here should give you more information:  
http://www.meassociation.org.uk/?p=10880

And now for Emily's so eloquent appeal:

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. 

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. 

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly. 

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison. 

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate. 

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. 

Many days I feel utter despair. 

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. 

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. 

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others: 

Please put an end to the abandonment of people with severe ME and give us all real reason to hope." 

How many more deaths will it take before something is done about this "syndrome?" Too many have already died and yet it continues... Царство тебе небесное...may you rest in peace, Emily.  (1981-2012)