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.

  

Unfortunately, I'm more aware of germs now that I have ME/CFS

Before I came down with ME/CFS, I caught colds or flus about once or twice a year.  Now it's about once a month.  I've seen the evidence in my natural killer cell numbers from blood tests: my immune system just isn't performing up to snuff.

Besides the obvious drawback--I get sick more--another unfortunate side effect is that I'm more aware of germs and the possibility of getting sick now. There was a time when I was mostly oblivious to the germ spreaders around me, but it seems that I notice them now.  For instance, last week, at a restaurant, I heard a nearby cough and instinctively looked around.  I then watched as a gentleman walked down the aisle between two rows of tables, coughing every few steps.  He was essentially crop-dusting two rows of tables as he walked.  Nobody seemed to notice but me.

I miss those days when I was oblivious to these such people.  Maybe I was even one of those people.

When my wife and I vacationed in Tokyo, Japan, a few years ago, before I came down with ME/CFS, we noticed that every 8th or 10th person wore a surgical mask in public.  At first we thought, "how depressing to live in a society where people are so germaphobic."  But we came to discover that while some people wear masks to prevent themselves from getting sick, most wear them to prevent others from  getting sick.  This is a common courtesy in Japan.  When one is sick, he/she wears a surgical mask in public to prevent others from getting sick.

I'm not suggesting that we should adopt this custom here in America.  In fact, I could never see such a thing catching on.  We Americans are far too vain, and probably too unconcerned with societal well-being.  Japan is a much more collectivist culture.  In American, we mostly look out for ourselves and, if others get sick, "oh well!"  It would take a pandemic of some heretofore undiscovered deadly virus before Americans would ever embrace such a mask-wearing custom.  Maybe that's a good thing.

In the end, I don't know what the "right" balance is between carefree living and germaphobia, but I believe that it lies somewhere between America's carefree crop-dusting lifestyle and the Japan's borderline mania.  But now that my immune system is weaker than before, the Japanese way certainly doesn't look as crazy as it once did.  People need to take responsibility for their own germs.  Stay home.  Cough into the crux of your arm (not your hand), and wash your hands if you're sick.  But mostly just stay home.

What are the chances of recovery from ME/CFS?

I researched this issue about 10 months ago, and summarized my findings in this post.  My conclusion at the time was that my chances of recovery were somewhere between 5% and 50%.

Recently I came across this new article that provides a little more hope for those, like myself, looking for good news.  While the author doesn't reduce his findings to a percentage, he clearly believes that most PWMEs will "recover" in one sense or another.  His sources and authorities seem sound.

I'm going to have to remember this article and return to it every so often.  The problem is, while message boards are a great way to network with other patients and learn about new treatments, they also leave one with the impression that very few people are recovering.  But, as my father-in-law (a scientist) pointed out, the ME/CFS message board crowd is a "self-selecting" group.  The boards may not be the best places to get a sense of remission rates.

While the linked article certainly lifted my spirits, it also ends with a cautionary note about what is meant by "recovery."

"As I have already stated, a classic mistake people with CFS often make is to think recovery means "returning to how I was living before I got sick." The person will seek to recreate the conditions in which illness initially developed, and will of course relapse. Many are presented with this lesson repeatedly, until they shift their criteria for what "recovery" means. It is not desirable to return to "how it was before."  

I would love to return to exactly how I was before, but I'm not expecting that. If I can just get to a point where I can do some mild exercise without crashing, and plan family trips without worrying about whether a crash will interfere, I will be happy.

Latest Appointment with Dr. W: Video Entry

I apologize for the poor quality of the audio, which makes it sound like I have a lisp....the S's all sound drawn out and emphasized.  I'm going to look into getting an external microphone to correct that issue.

Far Infrared Sauna for ME/CFS Treatment

What if you could purchase a magic button for a few hundred dollars?  When you pressed the button it would give you about 50% more energy for a couple of hours after, then would make you fall into a restful sleep?  Would it be worth the price?  For me, that's what my portable far infrared (FIR) sauna has become.

Long term effects: still to be determined.

The decision to purchase an FIR sauna didn't come easy.  I felt I was already chasing a number of treatments and was reluctant to add yet another.  But it was one of those situations where I kept being confronted with people touting the benefits and it became hard to ignore.  First, one of my CFS doctors (Dr. W) had been urging me to buy a FIR sauna for several months.  He said that many of his clients  cite their FIR saunas as their most effective treatment.  Then I kept stumbling upon message board threads in which other PWMEs praised the benefits of FIR saunas.  Then a personal friend recommended it.  So I finally decided to take a chance.

Here's what I've figured out about FIR saunas so far:

What is a portable FIR sauna? 

Infrared saunas are simply saunas that generate their heat in a different way, which proponents claim heats the body at a deeper level.  As Wikipedia describes it: 

An infrared sauna uses infrared heaters to emit infrared radiant heat which is absorbed directly into the human body, unlike traditional saunas which heat the body indirectly via air or steam.

In the case of my FIR sauna, I'm not sure exactly how it works.  All I know is that I plug the thing in, and the heat just radiates right out of the walls of the sauna.  Within a few minutes of plugging it in, it is fully heated.

Most FIR saunas on the market are of the portable variety, meaning they collapse after use and can be stored under a bed or in a closet.  Within the portable category, there are several sub-varieties.  There are quite a few lay-down varieties.  One type is simply a mat that you lay on with a blanket over you, like this.  Another lay-down type consists of a semi-cylidrical dome that the user lays inside, like this.

Another common type is the pop-up tent style, where the user sits in a small camping-style folding chair inside a pop-up tent with a PVC frame.  The user's head and arms stick outside of the tent so he/she can watch TV or read a book.  This is the type I have.  Here's a picture of someone using the exact make and model that I have.

What Are the Claimed Benefits for PWMEs?

There are a number of claimed benefits of FIR saunas for PWME's and Lyme patients.  The most common claim is, given that the detoxification and methylation pathways are blocked in PWMEs, the sauna provides the body an alternative method of releasing toxins -- by sweating them out.  In other words, the normal detoxification pathways are broken, so the sauna opens up a bypass route.  

The manufacturer of my FIR sauna also claims that the sauna raises one's body temperature not only during use but for hours afterwards, creating a sort of "artificial fever," which helps a PWME's weakened immune system battle pathogens.  I must admit, this claim made a certain amount of sense to me.  I've heard the theory that viral-induced ME/CFS tricks the body into lowering it's temperature, making it more difficult for the immune system to fight the virus with heat and fever.  The FIR sauna could be a way of artificially raising the body's temperature, at least for a few hours a day.  

I've experimented with this theory by taking my temperature using an oral thermometer both before and after my sauna sessions.  Generally, I've found that the sauna raises my body temperature by about 1.0 degree.  Over the next hour and a half, my temperature gradually returns to pre-sauna temperatures.  Is this temporary increase in body temperature enough to substantially help the immune system?  I haven't found any answers to this question yet.  

A final benefit worth noting is the potential cancer-fighting aspect.  Since many PWME's have low Natural Killer Cell function, and therefore lower defenses against cancer, we might need a little outside help.  According to Wikipedia: 

On the other hand, hyperthermia generated by infrared saunas may kill or weaken tumor cells, and is controlled to limit effects on healthy cells. Tumor cells, with a disorganized and compact vascular structure, have difficulty dissipating heat. Hyperthermia may therefore cause cancerous cells to undergo apoptosis in direct response to applied heat, while healthy tissues can more easily maintain a normal temperature. 

Note: the manufacturer cautions that the user must be careful to drink a lot of water to replace the liquid that is sweated out, and possibly replace minerals as well.

My Experience with FIR Sauna 

First of all, I can't yet tell if the sauna is helping me permanently heal and recover.  I may need to wait two or three more months to make that determination.  But, I can tell you that it's already been worth the price just for the daily boost of energy it provides.

I try to use it every day, but in reality, I end up using it about 4-5 days a week.  I start off by plugging the sauna in and using the attached remote control panel to set the heat setting to the maximum of 5.  I place the remote in it's designated pocket.  Then I make sure the TV remote is neatly tucked into the other front pocket where I can reach it.  I strip down to my boxers, climb inside, and sit down in the camping chair.  I zip the sauna closed so that only my head is sticking out.  Then I use the remote control to set the time of the session to the maximum duration: 30 minutes.  Only my head is outside of the sauna, poking out above a neckhole in the top.

Occasionally I slip my arms out through the arm slits to change the TV channel, but other than that I just relax and enjoy whatever's on TV.  For the first 10 minutes, I don't sweat much, as my body temperature slowly rises.  But during the last 20 minutes, I am sweating constantly and profusely from seemingly every pore in my body.  About every 30 seconds, I feel of bead of sweat give in to gravity and run down my torso, arm or legs.

Despite the high temperature, somehow this isn't as unbearable as the heat generated by traditional saunas.  I think this is because it helps to have my head outside of the sauna where it can stay cool and comfortable.  On the other hand, Wikipedia says: "This is because far-infrared rays do not heat the air inside the sauna, but they still heat the body."

By the time I climb out of the sauna after 30 minutes, I am soaking wet, as if I've just come out of the shower.  My boxers could be wrung out.  If my wife is in the room, I'll threaten to wrap her in a bear hug, which makes her squeal and run away, much to my amusement.  I then rinse off in the shower.

For the first couple of hours after a sauna session, I feel a comfortable burst of energy, comparable only to the feeling I used to get after a jog or a workout.  You know, the feeling where you feel calm but somehow energized and lucid at the same time?  In fact, it's exactly like that old post-workout feeling -- I can't distinguish it.  It feels like my circulation is finally working again.  That's why I said above, it's like having a magic button that I can press to reset how I feel.

Within a couple of hours after the session, I start to feel sleepy...just like after a workout.  Typically, I've found that I fall asleep easier and and sleep sounder after a sauna session.

Just to be clear, I don't have any affiliation with any of the sauna manufacturers.  I've simply found FIR saunas to be one of my more effective treatments and wanted to spread the word.  In fact, any sauna manufacturers who try to spam my comments section will not only be deleted but made an example out of!

Are my strange neuro symptoms tied to diet?

Every few months, I go through a period of 2-3 days where I get all sorts of strange neurological symptoms. I feel totally uncoordinated. Typing becomes very difficult. Walking becomes dicey. I feel unbalanced. Muscle twitches and numbness comes with it too.  I feel like I could fall at any time while walking.  It is a very difficult feeling to describe, but other PWMEs say they know exactly what I am talking about.  

I'm getting over one of these neuro flare-ups right now.  

Most of my crashes do NOT involve these symptoms, so it makes me wonder why a few do.  When I first got these symptoms, I thought they were possibly due to low potassium levels, as I'd recently started a B12 protocol.  Now, I'm not so sure.  I'm very good about maintaining my potassium levels while on the B12 protocol.  Are these symptoms just another bizarre aspect of this condition?  

I'm looking back on my health records for the last year trying to find any common denominator between these neuro symptoms and other factors near in time.  So far the only possibility I've come up with is that many of these episodes arose after eating eggplant.  Eggplant, of course, is a member of the nightshade family of foods, which is sometimes cited by PWME's as problematic -- specifically, leading to neuro symptoms.  But the thing is, there have been many more times throughout the past year when I've eaten eggplant and not gotten these symptoms.  Why sometimes and not others?  

I may have to cut out eggplant altogether for a while and see if the neuro symptoms stay away.  Other than that, I'm out of guesses.  I would love it if anyone else had some insight into this.  Is is just one of those inexplicable symptoms of ME/CFS that we simply have to deal with?  

The Problem with Getting Sick When You Have ME/CFS

I'm just now starting to get over a bug that I've been battling with for the last 11 days.  Looking back over my health chart for this year, it appears that this most recent bug is the 7th to hit me since the beginning of the calendar year.  We're in the 9th month.  That means I'm averaging one cold/flu bug every 1.2 months.  Mind you, this is on top of being regular ME/CFS-sick 100% of the time .... something I've heard referred to as being "sick on top of sick" (SOTOS).  Before I got ME/CFS, I typically caught a bug about once or twice a year at most.

Taking a conservative estimate, I'd say the symptoms for each of these illnesses lasted on average about 10 days.  That's 70 days of being SOTOS this year ... and we're only mid-way through September.  So far, there have been 274 calendar days this year.  That means I'm SOTOS 25% of time!  One out of every four days!  The numbers sound shocking...how could that be?  But when I look back on the past 8.5 months, it seems about right.

Whenever I try to explain ME/CFS to someone--which is rarely--I focus on the immune compromising aspect.  When I'm finished with this part of the explanation, the other person asks, "so, you get sick a lot."  I usually agree, and move on to my next point. But's that's not really the whole story, is it?  It's not just the frequency of infections.  It's really a triple threat: frequency, duration, and severity.

Regular ol' every day bugs that would have, in the past, barely fazed me, now knock me out of commission.  How do I know that these are just regular 'ol every day bugs?  Because my healthy wife and daughter get them too.  They're hardly affected at all...maybe a little runny nose or a slight cough, but they're no worse for the wear.  I, on the other hand, am knocked out with intense flu-like symptoms.  Regular colds become elevated to flu-like severity, and flus become a nightmare.  
Since getting ME/CFS, I've had sore throats so bad that I'd have never thought such pain in one's throat could have been possible.  It's the kind of pain that constantly demands your attention no matter how much you try to distract yourself.

I wonder sometimes if these serial illnesses are preventing me from making more progress toward remission.  What if every time I catch one of these bugs, I'm sent back to square one?  That's what it feels like sometimes.  I wonder, if I could somehow string together enough non-sick days in a row, would I slowly creep back toward regular health?