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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, July 26, 2013

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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  1. It is so interesting to hear about the way things work in other countries. The support your family gets from one another and from far off relatives is impressive.
    Your cousin sounds like the perfect person for you to spend time with. I can't imagine being with someone who knows from experience the best way to deal with CFS/fibro - that's rare

  2. Yes, Annette, it was an incredible experience to talk to a cousin who knew what I was going through, as well as my knowing what she was going through. And yes, seeing another country's medical systems is always fascinating. I can't begin to explain how happy and grateful I was to have had this experience. xx