New Blood Test Results: A Mixed Bag

I had my latest appointment with my other ME/CFS doctor yesterday, Dr. W.  My appointments with Dr. W tend to be fairly routine at this point: we check my blood test results, re-fill prescriptions as needed and sometimes tweak my supplements and Rx dosages.  The most interesting aspect is receiving my blood test results and following the progress of treatments with actual data.

This time, we tested some key immune markers that hadn't been tested in nearly two years, namely immunoglobulin (IgG) subclasses, and (a more indirect indication of immune health) candida antibodies.

As I've written about before, over the last two years I have gradually increased my "baseline" health.  The improvements have been moderate, but certainly noticeable.  It's definitely something more than just "getting used to it," although that is a factor too.  The improvements have been nothing world-beating, but then again, I would consider it a victory even if I managed to hold steady and not slide backwards.  I read about so many of my fellow patients who describe a long, slow slide backwards into poorer and poorer health, and I think that any patient who can at least maintain their baseline should be relatively happy.  A slight improvement, like mine, is something to be celebrated.

At the same time, I've been looking for some indication in my blood test results to explain why I've been feeling a little better lately.  I continue to be disappointed.

IgG Subclasses

I first had my IgG subclasses tested back in April, 2012--over two years ago.  While subclasses 1, 2 and 4 were in the normal ranges, subclass 3 was low (12, with a reference range of 22-178 mg/dL). Now two years later I had it tested again, after years of immune modulating supplements, probiotics, optimal Vitamin D3 levels, and a number of other treatments designed to boost or modulate my immune system, like Equilibrant, ImmunoStim, and others.  My new results: 12 again.

Dr. W states that my three other IgG subclasses are also low, although technically not out of range.  In each case, the numbers are in the lower third of the reference range, but this is nothing that would strike me as alarming.  Those numbers also remained about the same from 2 years ago.

Candida Antibodies

My Candida antibodies have actually gone back up (that's bad) after going down for a while...  While candida isn't a direct measure of immune health, candida overgrowth is a solid indicator of a weak immune system.  Candida overgrowth simply doesn't occur in people with healthy immune systems.

I used to test my Candida antibodies much more frequently, but my doctor stopped once it became clear that I had a good anti-Candida diet in place and I was also taking daily oral Nystanin for a while.  Here are my results from late 2011 and early 2012, alongside my recent results in bold.  The test measures three types of antibodies for a complete picture (IgG, IgA, and IgM).  Anything 1.0 or over is considered "out of range" on the high side:

              Dec. '11     Feb. '12    Apr. '12  May, '14

IgG         1.3            1.2            1.2         1.7

IgA          3.7            3.3            2.6         3.1

IgM         1.4            1.3            1.2         1.0

I supposed I could view these results either positively or negatively. On the one hand, I had been taking Nystatin at the time of the middle two tests (Feb and Apr. 2012).  Now, I haven't taken Nystatin for over a year and yet two of the three antibody types (IgA and IgM) are lower than the average of the prior three tests. Could this mean that all my diet and immune modulating work has helped?

On the other hand, IgG antibodies for Candida are higher than they've ever been, including when I was in my acute phase.  IgG and IgM antibodies, I believe, are found in the blood. You don't want to see those numbers go up because that could mean candida is becoming systemic. Candida overgrowth in the gut is one thing, but real problems begin when it becomes systemic and enters the blood stream in significant amounts.  It is not overly encouraging that IgM antibodies continue to drop, as those antibodies are usually most present in an early infection and one would expect them to wane as a long-term infection continues.  (Source).

I will be trying a month-long course of Diflucan to try to stop the Candida.  Unlike Nystatin, Diflucan can actually clear candida from the blood, not just the digestive tract. The downside is that it is harsh on the liver and must be used sparingly and under close medical supervision.

These results are just a little frustrating because I have been pretty damned disciplined about my diet and taking probiotics.  I would have expected better results.  There's not much else I can do (Diflucan is not a permanent solution), and feeling like you don't have any control over a bad situation is the worst feeling of all.  (I know, "welcome to ME/CFS," right?)

                                                                      Other Results

While not exactly related to immune function, I was shocked that my glucose tested high at 102 (range 65-99).  I was fasting on the morning of the test, and I have been a saint about sticking to my Paleo diet.  Genetically I tend to have high blood sugar, but again, I don't know what else I can do to control this.  I know there are blood sugar lowering medicines, but I don't want to add another pharmaceutical. 

Blood ammonia levels were also high 50 umol/L (normal range < or = 47).  High ammonia levels is a problem according to Dr. Yasko and her methylation protocol.  Now I have to take a couple steps back in that protocol as well. 

My Thoughts

It's not that I haven't seen any progress in these or previous blood test results.  Results like vitamin D3, thyroid, and testosterone levels have been brought back to close-to-optimal levels.  And perhaps this explains my slight improvement.  But honestly, I won't be happy unless/until I see improvement in my immune system.  Like many, I believe that immune dysfunction is at the heart of ME/CFS.  

While I know better, sometimes I had allowed myself to imagine that these slight improvements meant I would slowly climb out of this hole and get better and not have to worry about if I'll be able to play with my daughters and go on vacations and continue to work, etc.  

As Dr. W says, once you have Candida overgrowth, it is a life-long battle.  "It's a nasty, lifelong companion" he always says.  The same may be true for my ME/CFS in general.  In the best circumstances, you can manage it and hopefully stave off a backward slide and maybe even improve some, but I'm not sure that actually correcting one's immune system to the point of being "cured" is in the cards.  

How do we reconcile that with those occasional articles that claim a certain percentage of ME/CFS patients "recover?"  (Example)  I think the answer is that the surveys that produce those results have different ideas of what it means to "recover" than I do.  Probably many of them would already consider me "recovered" because I am more functional than average ME/CFS patient.  I can do things.  

But I certainly don't consider myself recovered, or even close to it.  So that's the rub: a realistic goal for me is to seek to be as healthy as I possibly can, but not to have expectations of ever being able to be carefree about my health again.  The daily frustrations and unpredictability of this disease will always be there in one sense or another.  The threat of a major relapse will perpetually be my shadow.  My task is to carve out as happy of a life as I can within those parameters.  

The "realities" that I'm writing about here are not new to me.  I've known them for a long time and have probably written about them before in this blog.  But I find that I sometimes need to reset my expectations.  My blog is called Quixotic because I have a tendency to stay optimistic even in the face of information that tells me I shouldn't be.  That's fine, but my challenge is to keep that spirit while at the same time understanding the situation accurately on an intellectual level.  With ME/CFS, and many other diseases no doubt, there's so often a conflict between the spirit and the intellect.  True peace of mind comes when we find a way to balance the two.

Gallery of Dead Possessions

Being newly diagnosed (within the last two years) I find that reminders of my past life are everywhere. It's difficult to open a door, or a cabinet, or a closet in my house without seeing something that reminds me of my former healthy lifestyle.  These objects—these remiders—are everywhere.  I'd imagine that other newly diagnosed patients deal with the same issues.  What are we supposed to do with this stuff?  Will we ever use any of it again?

I decided to start liquidating some of it—selling it on Craig's List.  Not all of it.  Just some. I figure, not only will this help me move on in my life, but it should emancipate a nice chunk of cash that's currently locked up in useless possessions.  

So this post is a sort of tribute to some of my favorite old possessions. (Man, that sounds corny).  I'll miss you, but I have to move on.  

*Incidentally, these pictures served two purposes.  If they look like they're arranged to be appealing to a Craig's List buyer, you're right!

This is the world's greatest beer pong table. We had some good times together. 

In surfing, your board collection is called a "quiver."  This is a small-ish quiver -- serious surfers have 6-10 boards.  You want to have a board for every mood and every sea condition.  I'll probably keep the longboard in case I improve well enough to do some lazy surfing in the future.  If not, my daughter can use it as a starter board some day.  The others must go.

Ahh, the hot tub.  Sadly, they say that PWMEs should avoid chlorinated water because the chlorine absorbs through our skin and our defective detoxification mechanisms can't deal with it effectively.  We'll see.  I might still use it occasionally.

Here's a little wetsuit drying rack I built out of PVC pipe.  It will still get some use from my wife's wetsuits, but  not nearly as much.

Mrs. Calvin doesn't drink much hard alcohol, so this stuff just gathers dust. 

Dry foods.  It's mostly carbs (except the nuts).

My work bench, my baby.  I shouldn't say these tools are completely useless to me now -- I still use them sometimes, just not nearly as often.

Three wetsuits: one for Winter, one for Spring & Fall, and one for Summer.  I can't tell you how much I miss suiting up.  It's like wearing a full-body compression sock: you're heart doesn't have to work nearly as hard to circulate blood. It's pretty relaxing

Sports equipment.  I'll probably keep the golf clubs - golf sounds like a reasonable possibility in the future.  

Snowboard gear.  It kills me that I might not be able to teach my daughter how to ski or snowboard.  I had always looked forward to that. 

This is a roof rack that allows you to strap surfboards to your car. 

Nintendo Wii.  Believe it or not, most of these games will cause me to crash if I play them.  

Backpacking gear.  Drive-in camping is still doable, but backpacking and hiking is out of the question right now.

Power tools.  I feel good just looking at these things.

Never used 'em much anyway.  I won't shed any tears over this stuff.

Actually, I might use these weights again some day, but I'm sticking to Tai Chi for now

Yerba Mate' accouterments.  Yerba mate' is a type of loose leaf, high caffeine tea from the lower half of South America.   You're supposed to drink it out of these gourds, as the natural flavor of the gourds leeches into the tea.  The metal straws (called bombillas) filter the tea leaves.  Unfortunately, the high caffeine content doesn't agree with me now.  It also supposedly robs one of B vitamins, which is the last thing I need.

Yoga mat.  I can still do some light yoga, but not enough to attend classes (which is where I used this mat).

Running shoes. Look at them--they're begging me to take them out for a run.  Sorry guys.

Breathalyzer.  People love these things at parties, I'm not kidding.  Apparently, folks like to see who is the drunkest at the party.  After it left my hands at a party, it was often hard to get back. 

Oh Bev Mo.  You're like the Toy'R'Us for adults.  I miss you.

TideMaster watch. This sucker tells you what the tide is at any given moment at thousands of beaches across the world.  It's based on the beaches' latitude and the position of the moon.

And finally, here's a small sampling of the clothes that don't fit any longer due to weight loss.  Some I've had altered, others are going into storage in case I gain the weight back.  

OK, that felt good to unburden myself.  Thank you.  In the future, I hope to do a more positive post about all of the items that have become more useful to me with ME/CFS.  I seem to have shifted my focus to more creative pursuits, which comes with a whole different array of fun supplies.

Article: What PWME's Want Well People to Know

Thanks to Sue Jackson and her excellent blog for bringing this article to our attention.  I'm going to repost it here because it's a great summary of the frustrations that we face in dealing with some well people.  My only criticism of the article is that it paints with too broad of a brush and doesn't do enough to acknowledge that there are many well people who do get it.  

The 5 Stages of Dealing with ME/CFS

I was having lunch with a fellow patient yesterday and we started talking about how many patients  pass through the same stages of dealing with ME/CFS.  This is evident when you talk to other patients online or in person.  We realized that very little changes over time in the ME/CFS community.  Patients who get ill today will basically follow the same path, trying the same treatments (often in the same order) as patients who first became ill 5 or 10 years ago.  Here's my attempt to define the stages of dealing with ME/CFS.

A caveat: there will be plenty of exceptions, as we all have different etiologies, levels of functionality, economic means, and social support.  But in my experience through interacting with hundreds of other patients online, this is generally how it goes.  Admittedly, this might be shaded toward my personal experience, although I've tried to eliminate personal bias.

Also, my sample must be biased toward online patients.  There is an entire subgroup of patients who never do any research and simply trust their doctors implicitly for diagnosis and treatment.  They are not represented here.

Keep in mind, patients are likely to drop out of this progression at any stage if they improve to about 90% or better.

Stage 1 - Pre-Diagnosis

This stage can last anywhere from 4 months to 10 years or more.  Beginning around the turn of the millennium  with the advent of the internet and the increasing acceptance of the ME/CFS diagnosis, it became more common for patients to receive an early diagnosis, i.e. within a year or two of onset.

This is often a time of fear and anxiety, as the lack of a diagnosis causes us to wonder endlessly about the possible causes of our illness.  Usually we visit somewhere between 10 to 30 doctors before receiving an ME/CFS diagnosis (rarely less than 10).  Often the ME/CFS diagnosis is guided by our own "process of elimination," having ruled out nearly every other possible cause of our symptoms before finally seeking out a doctor knowledgeable about ME/CFS.

Stage 2 - Heavy Research & Networking

After diagnosis, many patients begin a period of heavy research, if their cognitive abilities still allow.  Sometimes "brain fog" prevents this.  For those who can manage it, we often dive into ME/CFS literature with the goal of learning everything we can about this illness.  We start with internet sources, including message boards, and sometimes even branch into medical journals and books.  We often begin networking with other patients during this stage, through internet and in-person support groups.

Almost inevitably, the heavy research begins to slow down.  The term "burn out" is often used by patients reflecting on Stage 2.  For others, they don't so much burn out as reach the end of the line.  At some point, one begins stumbling across the same literature again and again and becomes satisfied that they're more-or-less familiar with the general ME/CFS landscape.  This is not to say we feel we've read "everything"—that would be impossible—but we have a working knowledge of most of the major theories of etiology and treatment.

Also during this stage, we usually begin exploring treatments, but maybe with only one or two supplements in combination with lifestyle changes (less work, diet changes).  Maybe a single prescription drug is tried.  Some of us overestimate our chances of a full and quick recovery.  If a patient has any inclination toward activism, it usually appears (and peaks) in this stage.

Stage 3 - Exploring a Multitude of Treatments

There's significant overlap between Stages 2 and 3—Stage 3 usually begins somewhere in the middle of Stage 2.  But eventually many patients find themselves on dozens of treatments (supplements and prescriptions), either at the same time, or in a series of experiments.  Some of us look for the right combination of treatments, while others look for the best single treatment.  This stage is guided by a mixture of doctor advice and ME/CFS community advice.  The research usually doesn't end during this stage (or any other stage) but it slows significantly.  We will still fully explore any new research breakthroughs or "hot button issues" making the rounds on message boards, but we don't actively seek out new information as aggressively as in Stage 2.

There's a wide time frame for this Stage—perhaps 6 months to 10 years or more.

Stage 4 - Settling Down

At some point, we become satisfied that we have explored most treatments that are reasonably available to us (given economic and geographical limitations), and we've ruled out many treatments that didn't help or made us worse.  We settle on one to three treatments that are most effective plus key lifestyle changes.

At this stage, some patients are more jaded and less hopeful for a full recovery.  The goal here is just  to regain some quality of life.  Hope for a full recovery at this stage often rests in the prospect of some future game-changing medical breakthrough.  We study news of ongoing and burgeoning research more closely than past research results.

(Stage 5 - Relapse)

If a patient suffers a major relapse or a sudden deterioration, sometimes they repeat Stages 2 through 4 in an abbreviated way.

                                                            _____________________

If you are new to ME/CFS and you're reading this, you might be wondering, "can't I  skip ahead to Stage 4?"  The answer is, no.  My advice to you would be to go through the these stages like the rest of us did.  If you don't, you'll always be wondering if you might have found something that worked for you.  Good luck and may you never reach the next stage.

[Update 12/31/12:  I submitted a draft of this post for feedback in the Members section of Phoenix Rising.  Many users there offered interesting comments, additions and criticisms.  The discussion is worth reading if you are a PR member.]

If not ME/CFS, it might be something else...

Reading this article linked on Yahoo! made me feel just a tiny bit better about living with a chronic illness because, from the looks it, it seems that health issue are somewhat part and parcel of living longer lives in modern times. Maybe things aren't supposed to be as bad as ME/CFS, but they aren't supposed to be perfect either. I'm also hopeful that my diet changes will minimize some of the other health problems described in this article - as if I'm investing now in better health later. Maybe the net result will even be positive - who knows?

Attended a "meetup" with other patients

I went to my first "meetup" with other patients this Wednesday and it turned out to be better than I expected.  It was a local support group that I found online back in March. I had been planning on attending one of their monthly meetings ever since, but something always seemed to come up -- often a crash -- that made it difficult to attend.  A couple of times, I learned in advance that the group had scheduled a guest speaker and I simply wasn't interested in listening to an hour-long commercial by some local "health consultant."  Finally, the stars aligned for this week's meeting.

I have to admit, I had some apprehensions about attending a support group.  Say the words "support group" and I imagine of a bunch of whiny people exchanging trite, new-age platitudes. But it wasn't like that at all.

The meeting was held in a coffee shop and the group took over its own seating section.  There was a brief round of formal introductions, but mostly it was free-form mingling...like a cocktail party, only seated...and no booze.  I found out there are some interesting and wise people in the group whose experiences make mine look like a walk in the park.  My only regret was that I had to leave after an hour and a half.  I could have easily stayed for much longer.

It's refreshing to speak with other people who know exactly what you're talking about; who speak the same language and know about the same doctors and treatments.  Meeting people online has been great, but in-person meetings add a whole new dimension where one can actually look another in the eye and communicate with tone and expression.  The experience also made me feel less like a statistical anomaly knowing that there were as many other CFS/FM patients living nearby.

Now it's really game on.  The ice is broken and I'm looking forward to going to more meetings and networking with actual real life CFS patients.

I try not to feel sorry for myself

My first eight months of sickness were marked by a difficult emotional coping period.   Looking back, I  seemed to have turned a corner at around the nine month mark, when it suddenly became easier to cope with my new limitations.  I reached a certain level of acceptance.  I didn't realize it was happening at the time, but I can see it now, especially when I review my old blog posts.

One of the things that helped me turn the corner was that, for some unknown reason, I stopped thinking so much about the activities that I used to enjoy.  First among those activities was surfing, but there are many, others, like jogging, drinking, yoga classes, snowboarding, and spontaneous road trips.

Well before I became sick, someone whose wisdom I value told me that "nothing in life is guaranteed." I keep coming back to that statement now whenever I'm tempting to dwell on thoughts of what I'm missing.  I try to remember that health, and the freedom to pursue superfluous recreational activities isn't guaranteed.  In fact, it's a privilege of a relatively small number of spoiled inhabitants of wealthy western countries. 

Sometimes I take this thought process a step further and remember the extreme unlikeliness of my existence here, on this planet.  There's an excellent quote on this topic from Bill Bryson's book, "A Short History of Nearly Everything."  

Not only have you been lucky enough to be attached since time immemorial to a favored evolutionary line, but you have also been extremely- make that miraculously- fortunate in your personal ancestry. Consider the fact that for 3.8 billion years, a period of time older than the Earth's mountains and rivers and oceans, everyone of your forbears on both sides has been attractive enough to find a mate, healthy enough to reproduce, and sufficiently blessed by fate and circumstances to live long enough to do so. Not one of your pertinent ancestors was squashed, devoured, drowned, starved, stranded, stuck fast, untimely wounded, or otherwise deflected from its life quest of delivering a tiny charge of genetic material to the right partner at the right moment in order to perpetuate the only possible sequence of hereditary combinations that could result - eventually, astoundingly, and all too briefly- in you.

Not only that, but I find myself remembering that, for most of human history, the average life expectancy of most humans was less than thirty years.  Even today, in many parts of the world, one can't reasonably expect to live past the age of 40.  Of course, I realize that these figures are a bit skewed by high infant mortality rates.  But the point is that, in at least one view of the cosmos, I'm living on borrowed time.  Every ounce of enjoyment I can squeeze out of life from this point forward is pure gravy.  It's bonus time.

Add to that the fact that, for most of human history and in many parts of the world today, life is/was often a full time exercise in survival.  It's hard to imagine that quality of life was too good when we (humans) were foraging for each meal, dodging predators, and walking miles for clean water.  Before modern medicine, a person was always one infected cut away from an untimely death.  Basically, life has always carried with it a heavy amount of suffering just based on the cruelties of nature (not even counting all the suffering that man inflicts on man).  This is why, I believe, that Buddhism grew out of the maxim that "life is suffering."

All this is to say that I'm trying to take life with ME/CFS in stride and put it into perspective.  Many of my fellow PWME's are much worse off--sometimes homebound or even bedbound.  I try to think of them when I'm tempted to sulk.  Or I think of those with terminal diseases and remember how lucky I am despite the challenges of ME/CFS.  Or I remember that, from a historical perspective, I'm on borrowed time and that everything from here on out is gravy.

  

Pride in Small Accomplishments (The Black Ink on My Balance Sheet)

The other day, my wife came down with a moderate cold or flu.  Because it wasn't a severe illness, she went to work anyway.  Midway through the day, I received a text from her that said, "I have a new found respect for what you do.  Even simple tasks are tough when you're sick."

My wife's text validated a vague attitude I'd fostered since getting sick last year:  a sense of satisfaction in accomplishing tasks that I previously took for granted -- tasks like washing the dishes, making the bed, pulling a few weeds, going to work, or changing a diaper.  Fifteen months ago, these things were just mundane chores.  They barely registered on the satisfaction scale.  But somehow the addition of a little adversity in the form of ME/CFS rendered them 10 times more satisfactory.

I'm not sure exactly why these simple tasks bring more satisfaction, but I have a couple theories.  The simple explanation is that the amount of satisfaction in completing a task is proportional to its difficulty.  Since ME/CFS makes nearly any task more difficult, it also makes nearly every task more gratifying.  But I think there's more to it than that.  Perhaps it has something to do with the pleasure of defiance.  ME/CFS comes into your life and tries to dictate every aspect of it: what you can do, when you can do it, and for how long.  To the extent one can do so safely, it just feels good to fight back and regain some measure of control.

As someone who's often trying to find a the positives among ME/CFS' many negatives, I count this new sense of satisfaction as a significant offset.  Like most of the positives I find, it won't fully offset the negative, but it brings me partway back to whole.  If I were to assign a score to to it, I might say that the increased difficulty carries a score of -10 points, but the increased satisfaction gives +6 points back.  In the same way, I try to think of the other effects of ME/CFS on my life in terms of their net effect.  There's a tendency sometimes to only focus on the negative side of the balance sheet because it's often the most obvious.  I'm finding that with more time to reflect, the positives gradually materialize.  And when the positives and negatives are balanced out, the net effect of ME/CFS isn't as bad as I'd feared, say, 7 or 8 months ago.

A key caveat here is that, in trying to accomplish whatever I can with ME/CFS, I have to make sure I'm not hindering recovery.  There's no satisfaction in damaging my health, and admittedly, I'm still struggling to pinpoint where my crash threshhold is -- something I don't think I'll ever nail down perfectly.

 

Measuring improvement proves tricky

For nearly eight months now, since the beginning of November when I first started treating my ME/CFS, I've been steadily "improving."  At least that's what I tell myself.  And that's what I tell others when they ask me how I'm doing.

But in the back of my mind, I keep wondering, if I've really been improving since November, shouldn't I be healthy by now?  Or at least noticeably closer to healthy than I was in November?  When I look back at my daily health log from November and December, I don't see a drastic difference.  I see the about the number of crash days versus non-crash days.

So I am starting to wonder if my sense of improvement might be illusory.  After all, I've always been an optimist, so it wouldn't be out of character for me to unconsciously confuse hope with actual improvement.  I notice I tend to make excuses for my crashes.  "Oh, this one's just a cold virus," I say, or "this one's just a start-up reaction to my new treatment."  At some point, I'm going to run out of excuses.

On the other hand, it's possible that I am improving but that the progress is so slow as to be almost imperceptible - like the process of aging, only in reverse.  I suppose I'll just have to wait longer to find out.  I just wish I could see a year or two into the future.  At least that way I could prepare myself for what's to come - good or bad - and plan accordingly.  But I guess that's part of life with ME/CFS: getting comfortable with uncertainty.

Quotes applicable to life with ME/CFS

In April, I linked to a list of quotes about ME/CFS.  I stumbled upon that list while gathering quotes that weren't necessarily about ME/CFS per se, but quotes that I felt would resonate with many PWMEs.  I've finally finished gathering those quotes, so here they are.  These are mostly quotes about illness, health, and facing adversity.  I hope you find one or two that speak to you.

He who has a 'why' to live, can bear with almost any 'how' ~ Friedrich Nietzsche

The most important thing in illness is never to lose heart. ~Nikolai Lenin 

Be careful about reading health books. You may die of a misprint.  ~ Mark Twain

Modern medicine is a negation of health. It isn't organized to serve human health, but only itself, as an institution. It makes more people sick than it heals.  ~Ivan Illich

The art of medicine consists in amusing the patient while nature cures the disease.  ~Voltaire [I've met a few doctors who must have studied at the Voltaire School of Medicine.]

A man is insensible to the relish of prosperity until he has tasted adversity.  ~Rosalind Russell

Effective health care depends on self-care; this fact is currently heralded as if it were a discovery.  ~Ivan Illich

Treasure the love you receive above all. It will survive long after your good health has vanished. ~Og Mandino

Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant. ~Horace

Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then.  ~John Wooden

A bad cold [or ME/CFS] wouldn't be so annoying if it weren't for the advice of our friends. ~Kin Hubbard 

Eat right, exercise regularly, die anyway. ~Author Unknown

A sad soul can kill you quicker than a germ. ~John Steinbeck

They claim red meat is bad for you. But I never saw a sick-looking tiger. ~Chi Chi Rodriguez

Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something. ~Lord Chesterfield

Sickness comes on horseback but departs on foot. ~Dutch Proverb, sometimes attributed to William C. Hazlitt

The appearance of a disease is swift as an arrow; its disappearance slow, like a thread. ~Chinese Proverb

The longer I live the less confidence I have in drugs and the greater is my confidence in the regulation and administration of diet and regimen. ~John Redman Coxe, 1800

Fresh air impoverishes the doctor. ~Danish Proverb

Health is like munny, we never have a true idea of its value until we lose it. ~Josh Billings

Gold that buys health can never be ill spent. ~Thomas Dekker, Westward Ho, 1604

From the bitterness of disease man learns the sweetness of health. ~Catalan Proverb

There is something in sickness that breaks down the pride of manhood. ~Charles Dickens

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. ~Susan Sontag, Illness as Metaphor, 1977

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.

Changing how I enjoy nature

Continuing with my quasi philosophical exploration of happiness with ME/CFS, I've been discussing the issue with members of various message boards.  To that end, several people have recommended that I try to "enjoy nature," or variations on that theme.  Instinctively, I wanted to dismiss these suggestions on the assumption that one must be healthy and energetic to enjoy nature.  At least, that seems to be the only way I know how to relate to nature.  But people kept suggesting "nature" as a path to happiness, over and over - people who were obviously sick like me.   So I was forced reexamine my assumptions.

This afternoon, I experienced a small moment of realization.

This may seem obvious to others, but it wasn't to me: there are many different ways to commune with nature.  For 35 years, the only way I've known how to relate to nature is as a sort of 'conqueror' - for lack of a better term - by demonstrating some sort of mastery over it.  Most of my experiences with nature involved participation in various sports.  I harnessed waves on a surfboard.  I negotiated mountainsides on a snowboard, and I jogged through wooded areas.  On camping trips I chopped, I gathered, I built, and I kindled -- all very active ways to engage nature.  So ingrained was this way of thinking that I hadn't even considered other ways to enjoy nature.

I realize now that there's nothing stopping me from experiencing nature, for instance, as Monet did - as a palette of colors.   Or as Ansel Adams.  Or John Muir.  Or Emerson.  Or Thoreau. Or even Darwin.  Or countless others who made careers and reputations simply from the way in which they enjoyed nature...passively.  As observers.

The point is, my old manner of connecting with nature was a young man's manner.  I probably would have outgrown it in the next decade anyway.  As we grow order, our relationship with nature matures.  There's nothing preventing me from maturing now, a few years ahead of schedule.  So that's what I intend to do.  Who's path I'll follow, I'm not exactly sure yet, but I'll make sure I personalize it and make it my own.

Maintaining Happiness with ME/CFS

Lately, I have been giving a lot of thought to whether it is possible to maintain my previous level of happiness now that I have ME/CFS. While I certainly wouldn't say that I'm unhappy now, I'm just not as supremely spirited as I was pre-ME. At first, I thought it would be impossible to be as happy as before ME. But after giving it more thought recently, I'm not so sure.

The concepts of quality of life and happiness, while similar, are distinct. The definition of "quality of life" includes physical and mental health, recreation and leisure time, and social belonging. Now, I don't think anyone, no matter how much they try to delude themselves, can deny that ME/CSF strikes a major blow to quality of life.

But is it possible to maintain happiness while suffering a reduced quality of life? Theoretically, I think the answer is yes.

I'm reminded of a lyric from the song The Will to Live, by Ben Harper:

Then I met a man who had to walk with his hands.

Born into a world he couldn't stand. 

Blessed with life but cursed as a man. 

Still he walks taller than most of us can

Most of us probably know someone who, despite being dealt a bad hand in life, seems inordinately happy. There's a gentleman that works in my office building who is confined to a wheelchair. I pass him in the halls and elevators, and we chat in the the lunch line. He seems, by all indications, to be one of the happiest people around. While I'm sure he deals with his share of pain privately, one cannot fake his apparent level of happiness on a consistent basis. He always seems to be laughing and joking and making new friends.

So I'm interested in how people facing such adverse circumstances manage to remain happy despite reduced quality of life. These examples tell us that it's possible, and I'm beginning to sense that I will get back there eventually. But how?

I don't have an answer yet, but I will get there. I'm interested in reading the biographies of other people who maintained happiness despite challenging circumstances; people like Helen Keller. I think I will incorporate my search for answers as an ongoing theme of this blog. And, as always, I'm interested in hearing from other people who've pondered this question...

Name the Movie

I am slowly climbing out of the crash that started last Sunday, with the help of antibiotics.  When you stay home from work you have seemingly endless amounts of time to drink fluids and watch movies, which is exactly what I did.  One of the movies I watched this week, reminded me of my struggle with ME.  It's not a movie that you would initially think relates to ME, but see if you can guess the movie from these [slightly altered] quotes.  All 3 quotes are from the movie's main character:

[On post-exertional malaise]  "I don't feel the sickness yet, but it's in the post. That's for sure. I'm in the [ME/CFS] limbo at the moment. Too ill to sleep. Too tired to stay awake, but the sickness is on its way. Sweat, chills, nausea. Pain and craving. An [illness] like nothing else I've ever known will soon take hold of me. It's on its way."
                                           _____________
"Thank you. With God's help I'll conquer this terrible affliction."
                                           _____________
[On crashing]. "Preparation. For this you will need one room which you will not leave. Soothing music. Tomato soup, ten tins of. Mushroom soup, eight tins of, for consumption cold. Ice cream, vanilla, one large tub of. Magnesia, milk of, one bottle. Paracetamol, mouthwash, vitamins. Mineral water, Lucozade. One mattress. One television and one bottle of [Tylenol]..."

If you guessed the movie is Trainspotting, you're correct.  Now, I'm not comparing ME/CFS to drug addiction.  But certain themes in the movie resonated with me.  The way I find myself pining for, scheming for, and almost obsessing about returning to health is echoed in the single-minded behavior of Trainspotting's addicts.

When you've been healthy for most of your life and, suddenly, in one day, your health slips away without any warning, you will do almost anything to get it back.  I never imagined that I would be lugging around a lunch pail full of supplements, reading book after book on a single subject, visiting doctors by the dozen, and using much of my free time to search the internet for clues to what's going on.  Yet here I am.

I've come to the conclusion that being healthy is really the ultimate high that life has to offer.  If/when I get healthy again, I'm making a promise to myself to never take a healthy day for granted.  In the meantime, I'm making another promise to myself to not take the better days (the non-crash days) for granted.  When I get out of this crash, I'm going to enjoy every minute of not being crashed.

Maybe we're not so rare...

It seems that if you mention ME/CFS to enough people, they start coming out of the proverbial woodwork with stories of friends and relatives who have it or have had it, or who are currently suffering from it.  It's people you've known for years and would have never suspected.

In the past three months, my family and I have discovered that we know four people who have been formally diagnosed with ME/CFS.  In some cases, we're talking about close family friends or in-laws, and we never had a clue.  Just in the last week, we've learned of two.  (By the way, three of the four made full recoveries at between 1.5 and 2 years after diagnosis).  It's even more surprising when you consider that we really don't mention ME/CFS to many people.  It makes me wonder how many other people we know who have been affected by ME/CFS, but who we won't discover until the topic somehow comes up in conversation.

I very rarely allow myself to have "why me" type of thoughts, but I'll admit that they float in and out of my head occasionally (maybe once a week, if we're being honest.)  So I need to remember this post the next time I have those thoughts.  Because, the "why me" line of thinking is predicated on a feeling one's circumstance is statistically improbable.  But if all of these other people I know have had it, maybe it's not so improbable after all.  That's the way I choose to look at it anyway...

How long does it take to accept your limitations?

On Sunday afternoon, Mrs. Calvin and I drove to the beach to expose our baby girl to the pleasures of salty air and booming surf.  When we arrived, the beach parking lot bustled with groups of surfers both beginning and ending their sessions.  Those beginning their sessions wrestled with their thick winter wet suits.  They went about this in silent excitement, almost anxiety, and I understood exactly how they must have been feeling.  A little over eight months ago, that was me.  I was them.  My heart would begin racing before I entered the water.

Those ending their sessions chattered excitedly about their triumphs.  One gentleman displayed his broken board and fielded questions from his friends.  Unloading the stroller from the car, I observed 3 or 4 of these scenes at once.  I vicariously experienced their endorphin highs, and the feeling of salt water dripping from newly cleared nasal passages. And the simple pleasure of toweling off one's soggy head in the cool air.  I miss everything about the surfing experience and the way it inundates all five senses.

I'm really trying to avoid dwelling on the negative here, but some days it feels like I've been grounded.  Like I'm watching the other "kids" play from my bedroom window.  Like I'm this guy:

I hope I don't sound glum.  I truly have a world of things to be thankful for.  It's just difficult adjusting to new limitations.  Often my mind still believes that I'm capable of doing things my body can no longer accomplish.  There's a lag.  I'll often see someone engaging in a fun activity--jogging, tennis, etc--, feel the urge to do it, and then remember that I can't do it.  

Ah well.  In one of my next few posts, I think I'll focus on brainstorming more interests that I can use to replace the activities I used to enjoy.    

10 ways ME actually **saves** me money

Ridiculously Optimistic Bright-Side Post #1

Every once is a while, I begin to worry about the cost of all my dietary supplements.  On top of that, I remember all the doctor's office co-pays and prescription co-pays and it starts to stress me a little.

At times like that, I have to remember that life before ME was undoubtedly more expensive.  I challenge other PWME's to think about how expensive their lives were before ME.  Here are just a few of the costs of my former lifestyle that have been reduced or eliminated -- which more than make up for the additional expenses.  (I do understand that many PWME's are unable to work, and that certainly complicates finances, to put it mildly.  But for now, I want to look at the expense side of the equation only.)

1.  Liquor   Order a bottle of wine at a restaurant and sometimes it's half your bill.  Even a glass of house wine is sometimes $10 or more.  A 12 pack of any decent beer runs $20.  Not a problem for me anymore.

2.  Fancy coffee drinks.  My days of ordering $5 venti cappuccinos or $4 chai lattes are over.  My doctor said, "nix the caffeine."  And you know what?  I don't really miss it.

3.  Other beverages.  They say that restaurants make their profits from beverage sales: sodas, lemonades, teas, sparking water.  Well, not from me anymore.  I'm not supposed to have any drink that's sweetened with anything other than stevia.  So now I drink only water at restaurants.

4.  Travel costs.  I don't drive as much because fewer activities are "on the table."  My wife and I have also gotten better about asking friends to come to us.  With gas prices averaging about $4/gal in California, this saves a ton.  It also puts less wear and tear on my car.

5.  Recreational costs.  Personally, I had a bad habit of spending (some would say, frivolously) on upgrading my sports equipment.  I always seemed to be shopping for a newer and better surfboard or snowboard.  At $500 to $800 apiece, this wasn't a cheap hobby.  Not to mention the cost of ski lift tickets (around $80/day).  Don't get me wrong, I'd return to my former lifestyle in a heartbeat if I could, but at least I'm spending less money.

6.  Gym membership.  There's $40 per month ($480/yr) more in my bank account.

7.  Desserts.  Whether it's ice cream sandwiches from the freezer at home, or $12 creme brulee at restaurants, I don't eat them anymore.

8.  Entertainment.  I'm certainly not cutting entertainment out of my life, but I probably won't be going to as many public concerts or movies, especially if I'm in the middle of a crash.

9.  Other healthcare costs.  The changes I've made to my diet will most likely avoid other health complications as I grow older.  My diet before ME was truly atrocious, but I hadn't yet realized it.  I believe it would have eventually led to other health problems.

10.  Impulse purchases.  In general, I'm much less likely to be "out shopping," and so less likely to make one of those foolish impulse purchases that I'd regret later: like a rice cooker or a ridiculous looking track jacket.

I'm sure there are more, but these 10 alone are more than enough to offset the cost of supplements and co-pays.  So I'm not going to worry about it any more.  Besides, what could be a more worthy expense than something to benefit one's health?  Now I understand why my grandparents always said, "...the important thing is you have your health."

Two Coping Strategies

I decided to allow myself to write about the psychological impact of adjusting to life with ME.  At first, I shied away from from that topic because I didn't want the blog to devolve into my own private "pity party"--just a place where I vent my frustrations.  I wanted to keep it mostly factual, so that when (not if) I recovered, others could consider duplicating my path.  But the bottom line is, ME has brought a significant change in my quality of life and outlook, and I think it's legitimate to discuss those issues here.  Instead of just venting, however, I want to discuss what I'm actually doing to help me adjust.

The Current Problem.  I find I have a tendency to idealize my former, healthy self.  During the quiet times of the day, my mind is often racing, scheming, and slightly obsessing over getting back to that person I used to be.  I've always been someone who enjoys solving problems (whether they be mine or others'), and a lifetime of habit has trained me to think in a problem-solving pattern.  It's as if, on some level, I believe that if I just think...hard...enough, I can solve this little ME problem.

Of course, that's not realistic and not a productive way to spend my mental energy.  So I've been consciously changing that pattern of thinking to something more productive and healthy.  So far, I've come up with a few things that help.

1.  Don't idealize my former self.  An ideal: that's just what it is.  I have to remember that my pre-ME life was not perfect, and I had other problems.  Frankly, my diet and sleep habits were so atrocious that, in a few small ways, I'm actually healthier now.  I rarely felt rested, in the sense of having gotten enough sleep (which is vastly different than the body fatigue I have now), and I usually had some nagging injury or another from all my extra "curricular" activities.  This may seem like a small consolation, but it's significant to me.

I'm not a Buddhist, but I remember reading somewhere that the Buddha said, "life is suffering,"  and apparently this mantra is central to Buddhist philosophy.  With my apologies to Buddhists for oversimplifying things, I take this to mean that "if it's not one problem, it's another."  Life always comes with problems, and new problems have a way of pushing other problems and would-be problems out of the way.  The lifestyle adjustments I've had to make because of ME will inevitably avoid other types of "suffering" that would have come with my old lifestyle.  By now, I might have thrown out my back doing carpentry work around the house, or torn my ACL while surfing, or been hit by a car, or continued the long, slow destruction of my body with unhealthy eating habits.  The point is, I'm not going to waste time lamenting what my life could be like right now if I hadn't gotten ME because that's an unknowable ideal.

2.  Make New Goals and New Plans.  I recently read the biography of Steve Jobs, the founder of Apple Computer, and something interesting struck me.  When he was terminally ill with cancer and knew he would die within a few months, he found that, in order to avoid despair, he had to keep making long term goals--knowing full well that he would not live long enough to attain them.

In recent months, I've found myself reluctant to make long-term plans...not because I thought I would die like Jobs, but because I can't predict what my physical condition will be in the future.  Summer vacations?  Camping?  Work projects?  Who knows if I'll be healthy enough when the time comes?

But I've found that it's not healthy to stop making plans and setting goals, even if I'm not ultimately able to fulfill them.  If the time comes and I'm not healthy enough, people will understand. I can deal with it then.  In the meantime, it's critical to make plans just as I always have.  For me, happiness is strongly correlated with planning for the future.

In terms of goals, my goals now may be different, but it's important that I make them of equal value. Equal quality.  While, before ME, I might set goals in say, athletics & fitness, now I set goals like: write a book for my daughter compiling life's anecdotes and lessons.  I don't see either goal as qualitatively better than the other...the latter is simply one that I can handle in my current situation.  So I'm changing goals, not downgrading or eliminating them.

I have a few other thoughts on this subject, but I'll have to save those for another time.  Thanks for reading!