Downfall parody: the CFS version

Yesterday, I was reading a list of the best internet memes of all time, and it occurred to me that a lot of memes are absolutely ripe to be modified for ME topics.  I think I'll start adapting them and posting here on my blog from time to time.  I'll call them MEmes.

Here's my contribution to the Downfall parody genre.

Blogger will only embed the video in this small format.  I suggest you click the YouTube logo on the bottom right of the video and view it directly on my YouTube page.

Unpredictability of crashes - the upside

I'm starting to realize that recovery from crashes can be just as unpredictable as their onset.

Last week I was crashed all week--which, for me, means barely being able to drag myself into work and back home again.  Whether this crash was a reaction to the increased dose of Equilibrant, or just another crash, I'll address in another post.

On Thursday, my wife, daughter and I boarded an airplane for a weekend trip to San Francisco.  The trip was to involve a wedding on Saturday, a family reunion on Sunday, and the usual rigors of travel.

So there I was in the airport on Thursday, in the midst of a crash, thinking that my prospects for pulling out of the crash seemed dim.  Some people say you have to be a little crazy to travel with an infant, and here I was attempting it in the middle of a crash.  It seemed so many factors were working against me:

-Already in a crash
-Lugging baggage through long airport concourses
-About to face the crash-inducing altitude of air travel
-...plus the dirty cabin air
-...followed by 2+ days of driving all over the Bay Area.

But to my surprise, the crash gradually began to lift starting Saturday morning.  By the time the wedding began on Saturday afternoon, I felt pretty decent.  Of course, drinking and dancing were out of the question, but I found that I didn't miss them as much as I'd expected.  I even attended the informal after-party at a local bar.  Still, I thought, the odds are that this will catch up to me the following morning.

Well, it didn't, and I felt just as lively at Sunday's family reunion.  We're back home in Southern California now and the rigors of the trip don't seem to have taken a toll on me.  I don't know what to make of it.  Every time I think I'm starting to figure out ME's patterns, its cause/effect relationships, it surprises me.

For now, all I can do is remember to be thankful and to enjoy every second of these times when I'm not crashed.

IACFS/ME releases an excellent primer for doctors

The International Association for CFS/ME recently released "A Primer for Clinical Practitioners," intended to educate doctors on ME/CFS.   The main body of the document is about 25 pages in PDF format.  Within those 25 pages, the IACFS/ME summarizes most key topics, from terminology, to etiology (causes); from diagnosis, and treatment, to related conditions.

Based on its title, the primer is meant to be used by doctors only.  But I don't see why it shouldn't be given to anyone who needs to know more about ME/CFS.  The information is presented in a plain, straightforward manner.  Honestly, a fourth grader could understand this material.  Why not send a copy to your family, your employer, or anyone who you'd like to "get it"?

The IACFS/ME requests a $15 donation, but you don't have to donate to gain access to the document.  I did, but only after reading it and satisfying myself that it is a quality product.

If I had a criticism of the primer, it would be the omission of certain testing recommendations.  While Seciton 3:1 gives a good summary of immune system abnormalities, Tables 1 and 2 (laboratory testing)  don't mention tests of Natural Killer Cell activity, CD4/CD8 counts, or even antibody tests for related infections like EBV, CMV, HHV-6 etc.  But, overall, it's an excellent resource and something worth sharing with others.

Looking forward to anniversary, oddly...

In a weird way, I'm looking forward to this summer and the anniversary of my onset of ME/CFS.  Let me explain.

I deal with the loss of quality of life fairly well on most days.  I believe evolution has equipped humans with a remarkable ability to adjust, mentally and emotionally, to new circumstances.  I think this innate ability is so hardwired into our brains that it sometimes plays with our sense of time.  Have you ever said, "I can't believe that X event only occurred last year? It seems like ages!"

After the first four or five months of my illness, it became apparent that I was "in this for the long haul."  So, at most times, I don't even think about what life used to be like.  In some ways, it feels as if I've always dealt with this problem...as if it's just another fact of life.  But one thing keeps interrupting the flow:  the anniversaries of last year's big events.

December arrives, and I think: "Gee, last December, I was able to catch a flight without crashing"
Then January comes, and I think: "Last January, I was on a ski trip with my buddies"
Then: "Last April, I was sipping Margaritas in Cabo"
Then: "Last May, I didn't have to worry about whether I'd feel well enough to attend the annual family picnic"
And so on...

These are the thoughts that bring a little sadness into an otherwise pleasant day.  So, while I don't look forward to knowing that I've been sick for an entire year (and I know that's mere child's play to some of you), I want to move past these regular reminders of what I was able to do last year.  

It's not that I don't have hopes for the Equilibrant--I do--but it's unreasonable to expect an instant and full recovery.  (Dr. C's words, not mine.)  If it works and re-balances my immune system, it will take time.  And who knows what level of functionality it might restore me to?  Dare I dream of 100%?

Until then, it's best to look forward to the future--even if it IS a future with ME/CFS.

Study mentions green tea as **bad** for ME/CFS

This research article regarding the development of a home monitoring method for Th1/Th2 imbalance has been mentioned on some of the forums lately.  It sounds as if the test itself is a long way from being something that the average person can buy/use on a regular basis.  But, what's interesting is that the article mentions green tea as being bad for PWMEs because it stimulates the Th2 side of the immune system -- exactly what I don't want, according to my doctor.

I find this particularly interesting because I drank a cup of green tea (decaf.) yesterday afternoon and woke up feeling horrible today.  Still do, in fact.  I had just climbed out of a brief two-day crash,  the brevity of which I believed was a good sign that the Equillibrant was working.  So today's unexpected dip right back into crash mode makes me wonder if the green tea had anything to do with it.

[5/23/12 update:  Here's an article explaining why green tea is bad for Th2 dominant people.]

Ridiculously optimistic, bright-side post # 4

I'm introducing a new theme to the blog today.  For better or worse, I tend to be a relentlessly optimistic person; the type who seeks to find the "bright side" of even the most frustrating situations.  I occasionally have these positive thoughts with respect to ME/CFS.  (Yes, there is a bright side there sometimes.  You have to look very hard, but it's there.)  So, I decided to start blogging these points periodically, under the tag "Ridiculously optimistic, bright-side post #__", or ROBP for short.

I figure, there are already plenty of blogs that seek better awareness of ME/CFS by highlighting the seriousness of our illness.  Those bloggers fight an important fight, for which I respect them immensely.  But I feel that, in staying true to myself, and true to the very title of my blog "Quixotic," I need to focus on the bright side of things.  As the negatives aspects pile up, I think it's important to remember that there are some positives to help balance things out slightly.  In that spirit, I am retroactively designating three old posts as ROBP numbers 1, 2, and 3.

And here, my friends, is number 4:

I'm not sure how to put this... Um... Hopefully we can all be adults about this so I'll just come right out and say it.  I'm 1000% less flatulent than I used to be.  Undoubtedly, this is due to my change to a low carb diet.  But, I mean, wow!  I hardly ever have the urge to pass gas any longer.  I didn't even know that was possible!  My wife thanks you for that, ME/CFS.  I thank you for that.  That's got to be a sign of better GI health, doesn't it?

Way-too-early update on Equilibrant

I've been on Equilibrant for two weeks, and although it's probably much too early to draw any conclusions, that's never stopped me in the past!  I'm up to two pills a day, which is only a third of the maximum daily dose, but I believe it might already be having an effect.

Dr. C warned me that I would feel flu-like symptoms when I started taking Equilibrant, and that I would feel those same symptoms every time I increased the dose.  Sure enough, within a few hours of my first dose, I felt strong flu-like symptoms.  These symptoms lasted for about 3 or 4 days.  (Skeptics will say that I was simply experiencing a placebo affect, but I know I wasn't.)

The remarkable thing was that, at the time I started the Equilibrant, I was experiencing the unmistakable beginnings of a cold--a sore throat and sniffles.  I became more than a little distressed at this because I'd already had two colds since the beginning of the year and, due to my weakened immune systems, they proved to be very resilient foes.  Well, this time, a full-blown cold never materialized.  I believe--but, of course, can never prove--that the Equilibrant kicked the Th1 side of my immune system into gear and defeated the cold.

After the initial flu-like symptoms disappeared, I enjoyed about a week of excellent, high energy days. I almost felt normal again.  In this middle of this high-energy period, I increased my dose to two tablets per day.  This time, I did not experience the flu-like symptoms like I had previously.  But, on the fifth day after increasing the dose (which was yesterday), I had a moderate crash.  I remain crashed today, as I write this.

Dr. C never said I wouldn't have any more crashes.  Rather, he said if the Equilibrant is working, my crashes should gradually become less severe, and less frequent.  So far, I cannot tell if this crash is any less severe than normal--perhaps a little.  But then again, I'm only at 2 pills per day.  My typical crash lasts 3 to 6 days, so if I'm feeling better by tomorrow evening, I will take that as a good sign.

In the meantime, be well and I'll see you in the next post.