Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Sunday, July 14, 2013

Now I've really gone and done it!

My life's passion before ME/CFS was surfing.  Both my wife and I would surf whenever we had free time.  But in an ugly irony, my doctor (Dr. C) believes that I probably contracted ME/CFS due to an enterovirus I ingested while surfing in dirty water.

Lately, when I'm feeling up to it, my wife and I have been spending our summer Sundays at the beach. I tend to feel better and more energized when I get a large dose of Vitamin D from the sun.

Today we packed the car as soon as the kids woke up and were at the beach by 9:00 a.m. with our two baby girls and a veritable supply train of infant care supplies.  Of course, these days we only pack one surfboard (my wife's) instead of two.  I set up a half-tent cabana, settled into my beach chair and prepared for a morning of beach chair riding.

My wife brought her old longboard instead of her newer, shorter board.  It's an eye-searing hot pink and looks hilarious among the usual white boards of the other surfers.  I love to watch Mrs. Calvin surf on this hot-pink abomination because (a) it's comical, and (b) it's so easy to spot her in the line-up.  She can be picked out from 70 yards, no problem.  And this makes it simple for me to point her out to our older daughter, C, as Mrs. Calvin catches a wave.  "Look, there goes mom!"

"Mommy surf!" says C, clapping her hands.

After 45 minutes, Mrs. Calvin came back to shore, took a seat, and began breastfeeding the baby.  We watched the other surfers.

On my very best days, I can sometimes convince myself that I am close to normal.  In reality, I am not close.  My physiology is too deranged in too many ways for that to be true.  I sometimes indulge the fantasy anyway.  Lately, I've been further encouraged by the testosterone injections that I've recently started taking.  They do nothing to treat the root cause of ME/CFS, but they make up for some of the weakness caused by it.  (That's a topic for another post).

Nothing motivates me to want to surf like watching people who are doing it wrong.  Summer brings out all the beginners and "kooks" (people who think they know what they're doing, but really don't).  When I analyze my feelings toward them, I realize it's nothing more than jealousy.  These kooks call themselves "surfers" and play up the image of a surfer, and they don't deserve it.  I suppose I feel like I actually deserve it, but of course I can't because of ME/CFS.  It seems unfair.

For over 4 hours, I debated with myself about whether to attempt surfing today, which, if I did it, would be the first time since I came down with ME/CFS over two years ago.  My default position was, "no, it's not worth the crash."  I changed my mind 7 or 8 times.  The matter of the hot-pink abomination also factored into my decision making.

You can probably guess where this is going.  At around 1p.m., I decided to catch one single wave.  I would accept whatever consequences came.

Once I'd made the decision, I felt surprisingly nervous.  Would I remember how to do it?

I paddled out through the breakers and into the lineup easily.  It felt natural.  I drew some stares from the other surfers for the hot-pink board, but nobody said anything.  In surfing circles, an osentatious board or wetsuit usually means the owner is either a complete kook or a phenomenal talent.  I am neither, but they didn't know that yet.

The most exhaustive part of surfing is paddling out through the breakers, so I decided that I would only do this once.  That left no margin for error.  If if paddled for a wave and didn't make the drop, I would allow myself to wash back to shore.  No do-overs.  For that reason, I wanted to make sure that whatever wave I chose was wide open (no other surfers competing for it) and relatively easy to make.  I wanted to take my time and wait for the perfect wave.  This could be my last wave ever.

Waves come in sets of about 4 to 10.  After waiting 20 minutes for the right set, a large set of waves came through.  The other surfers in my area cleared out as they caught the earlier waves in the set.  By the end of the set I was alone.

I paddled for the last wave in the set and didn't think I had caught it.  I made a second effort and felt the wave pick me up.  I popped up to me feet, made quick bottom turn and rode the face for a few seconds before the wave quickly closed out.

Two years ago, this ride would have been a unmemorable low-light of a long surf session.  Today, I felt pretty good about it.  I had no trouble popping-up and maintaining my balance on a wave that was quickly closing out.  It felt natural.  All my skills came immediately back to me, which was an enormous relief.

Back on shore, I was greeted by the beaming smiles of C and Mrs. Calvin.  The latter knew knew how much this seemingly unremarkable ride meant to me.

Now, we wait.  Six hours later, I still feel fine, but let's see how I feel tomorrow.


  1. An unfortunate post script to this story is that I lost my wedding ring in the water. Since I'm out of the habit of surfing, I forgot to take it off before I went in the water.

    So that short ride is going to end up being VERY expensive, fiscally. We'll see about physically.

  2. Hey Patrick, I really hope you don't crash over this. Feels good to reconnect with your former self, even if just a sliver of it. I honestly think the T injections have allowed me to resume exercising to a limited degree, the by product helping me mentally. Not sure if I feel it elsewhere, but my doc doesn't think I could exercise to the level I am w/o it. Just be careful....once you get a taste of an old passion you naturally want more. On good days I get tempted to push it a bit more to just see if I can recapture more of my old self. I like to water ski here in MN, and I can go for about 5 minutes. When I tried to do 10 minutes last summer, the next days my legs felt lifeless, and my brain in a heavy fog. But man, did that experience feel good. Let us know how you are 48 hours post surfing!!

    1. Hi Bret. I'm glad to know that others like you have also dabbled in active sports like water skiing. That's encouraging to hear. And I completely agree with you that it might not be possible without the testosterone injections. That seems to really give me a boost. (Although it makes me wonder what our female counterparts could do about it Could they take smaller doses and still get a beneficial effect without becoming hairy and deep-voiced?) But I digress.

  3. I love the way you wrote about this experience. I don't surf but I can imagine the freedom and excitement of being able to do something that was so much a part of you 'before'. I hope you didn't crash too badly?!

  4. This is beautifully written. I hope you didn't crash. I'm a former swimmer, and it's hard to limit myself to 250 meters instead of 1000m (I used to swim 5k per day)

  5. How exciting! I'm so happy for you. Hope you are still doing okay.

  6. Reading through your blog the past few days, an entry or two at a time. Really sorry to hear about losing your ring but hope the memory from surfing continues to be one you can use as a touchstone.

    I used to ride motorcycles on street and track. Almost two years into the CFS/ME arena, and I get the same nervousness and "charge" out of seeing if I can make it to the end of the block and back. I don't know if I would ever throw a leg over a bike again, but surfing sounds really compelling the way you write about it. Thanks.