This past Wednesday I had an appointment with my "B Team" ME/CFS specialist, Dr. W. Usually I don't even blog about my appointments with him anymore because they've settled into a routine where we simply check my labs and renew prescriptions as necessary. But this time we added a new high-risk, high-reward treatment.
I told Dr. W that most of my symptoms have shown improvements, although slight, over the past six months, except one. Brain fog. I used to get brain fog only rarely. When it hit, it was utterly crushing. It would prevent me from doing anything but sitting around feeling sorry for myself. (I wrote about how bad my brain fog would get in this post from February.)
Over the last six months, the situation has gradually changed. I don't think I have had even a single episode of crushing brain fog since that February post. In its place, I have been gradually getting more and more frequent episodes of a more subtle brain fog--a much more mild version where I am still mostly functional. As of recently, I would estimate the brain fog is there about 1/3 to 1/2 of the time. It makes me wonder if I'm even dealing with the same type of "brain fog" as before. Maybe this new version is caused by something completely different altogether.
I asked Dr. W about a treatment called Vyvanse, which was brought to my attention by my friend Bret, who I know through this blog, and more recently, some other patients. Vyvanse was developed as an ADHD drug, and is one of the newer drugs for that purpose in the same class as older drugs like Ritalin and Adderall.
Dr. W stated that he didn't have enough experience with Vyvanse to feel comfortable prescribing it, and besides, most insurance companies don't cover it for off label uses yet. Instead, he recommended Vyvanse's cousin Adderall. I was receptive to the idea of Adderall on an as-needed basis for brain fog because I've seen a number of other PWME's post about their positive experiences with it. So he decided to start me with Adderall and said that he would look more into Vyvanse in the mean time.
Now, here's the serious rub: Adderall can be habit forming, especially when taken every day. We had a frank discussion about ways to avoid addiction. My goal is to use it in small doses (much smaller than would be given for ADHD) and only as needed when my brain fog is particularly bad. To help force me to pace my dosing, he prescribed me only a two month supply with no refills. My next appointment isn't for 5 months.
On Friday, I tried my first dose - a tiny crumb from one of the tablets. I believe there was a definite improvement of mental clarity, which lasted for about 4 or 5 hours. Even after it wore off, it seemed that my brain fog was gone for the rest of the day. I haven't tried it again since, but that initial test was promising. At the same time, I know I have to be careful with this drug. I will update as necessary...
_________________
I had a particularly good week health-wise with no major crash days and decent functionality. And so I feel like I'm in a good place, mentally, right now. I understand this is easy for someone like me who's only moderately ill to say. But in my present state, I feel like I can carve out a happy life for myself even if I never improve any further. Of course, I always feel like that when I'm on a hot streak. If I crash tomorrow, I'll feel much differently.
Sunday, August 11, 2013
Monday, August 5, 2013
Some ME/CFS projects in waiting
Ever since I started this blog, I've felt that I had at least one other ME/CFS-related project in me. Whether it's an advocacy project, or some other kind of community building activity, I feel like I have something else to give. Of course, I'm taking the long view on this, and not necessarily going to dive into something right this instant. Then again, if the stars align, maybe I will. For now I just want to get down a few of my ideas in writing.
1. An ME/CFS Podcast or Webcast
At first this idea seemed daunting—like it would require an immense amount of technical know-how and expensive equipment. But after a little research, I'm now convinced that it could be done fairly cheaply and with minimum technical skill. There are apparently several brands of inexpensive software to help amateurs produce a podcast with relative ease.
I envision it working like this: First, I would not attempt it alone. I would want at least one co-host, but preferably two. A mix of genders would be best. We would meet online remotely for the show's taping, which amounts to a glorified conference call but with better audio quality. We would produce one show per month—any more is unreasonable to expect of chronically ill people.
Before each show's taping, the hosts would circulate and collaborate on an agenda. The show would have three segments. In the first segment, the hosts read and discuss a few of the major headlines from the ME/CFS world from the previous month. The banter would be a mix of informative (based on the hosts' research), but mostly personal perspective and friendly debate among the hosts. As the show grows, we would try to bring in occasional guests for interviews.
The second segment would raise topics of a more "social support" variety. There are literally endless numbers of life-with-ME type topics that could be gleaned right from the ME/CFS message boards. In the final segment, we would read select listener emails and discuss whatever topics the listeners raised.
The overall idea would be to generate a good mix of information and entertainment content - especially for those PWME's who have visual or neurological issues that make extended computer use difficult. Obviously, there are a number of logistical hurdles that would have to be overcome to get this project going, but with the right partners, I think it would be a fun, worthwhile, and hopefully valued by a certain segment of our community.
It also occurred to me that, rather than doing a true "podcast," the show might be accessible to a wider audience simply uploading it as an audio file to YouTube.
2. Annual Awards
As far as I know, the ME/CFS community doesn't have any awards to....um...award. I've seen a few bloggers who have won general "health blogger" awards, but nothing for our community specifically. In my view, the awards wouldn't have to be limited to just bloggers. We could award researchers, journalists, foundations, doctors...whatever we can think of.
I haven't decided yet how the nomination process would work (maybe open submission by email), but I would want the final voting to be open to all members of the community. That way, the winners can have the satisfaction of knowing that they were chosen by the community at large. The website could briefly profile all of the nominees before voting begins.
I wouldn't want to present the awards, alone, from my humble little blog. Rather, I'd either set up a separate foundation with it's own website, or partner with a site that has more name recognition in the community. As for the name of the awards, most likely, we might simply take the name of my partner's organization and add an "s" to the end, ala Emmys, Grammys, Tonys, etc.
No money would come with the awards—just an honor. At first, the awards might not mean much to the recipients, but as the years pass, I hope the name recognition would catch on and the recipients would receive it with pride.
Off the top of my head, a few categories to consider:
-Achievement in ME/CFS research
-Excellence in ME/CFS patient care (by a doctor or other health care professional)
-Patient advocate of the year
-Blog post of the year (journalistic style)
-Blog post of the year (personal/opinion)
I haven't decided yet if the awards should include some sort of tangible plaque or trophy, or if we would simply inform the winners of their recognition and maybe forward an electronic badge or emblem that can be posted on their website. I'm leaning toward the latter because, well, it's free.
3. Supplement Exchange
I of course can't take credit for this idea. It has been talked about on forums a few times that I can remember. But as far as I know, it has never gone past the "idea" stage.
There are an enormous number of us with large boxes of unused supplements at home. Often we've tried one or two capsules from a $30 bottle and realized we don't react well. If that occurs two, three, four or more times, suddenly we've got a lot of money tied up in inventory. Wouldn't it be great if we could all exchange our inventories for something else we can use?
Ideally, we'd want a separate website just for this function, as opposed to a messy sub-forum or some other site that's not tailored to this particular use. Each user has an account profile, which they populate with the names, expiration dates, and approximate quantity remaining of each spare supplement they have. If one is looking to make a trade, they log in, search for someone with the supplement they need and propose a trade. Both parties simply pay to ship the supplement to the other person.
Naturally, there would be a temptation by some to list and exchange prescription drugs, but for legal reason, this would not be allowed.
A downside to this idea is that I have absolutely no computer skills, so I'm really just posting this in the hopes that someone might take this idea and run with it!
1. An ME/CFS Podcast or Webcast
At first this idea seemed daunting—like it would require an immense amount of technical know-how and expensive equipment. But after a little research, I'm now convinced that it could be done fairly cheaply and with minimum technical skill. There are apparently several brands of inexpensive software to help amateurs produce a podcast with relative ease.
I envision it working like this: First, I would not attempt it alone. I would want at least one co-host, but preferably two. A mix of genders would be best. We would meet online remotely for the show's taping, which amounts to a glorified conference call but with better audio quality. We would produce one show per month—any more is unreasonable to expect of chronically ill people.
Before each show's taping, the hosts would circulate and collaborate on an agenda. The show would have three segments. In the first segment, the hosts read and discuss a few of the major headlines from the ME/CFS world from the previous month. The banter would be a mix of informative (based on the hosts' research), but mostly personal perspective and friendly debate among the hosts. As the show grows, we would try to bring in occasional guests for interviews.
The second segment would raise topics of a more "social support" variety. There are literally endless numbers of life-with-ME type topics that could be gleaned right from the ME/CFS message boards. In the final segment, we would read select listener emails and discuss whatever topics the listeners raised.
The overall idea would be to generate a good mix of information and entertainment content - especially for those PWME's who have visual or neurological issues that make extended computer use difficult. Obviously, there are a number of logistical hurdles that would have to be overcome to get this project going, but with the right partners, I think it would be a fun, worthwhile, and hopefully valued by a certain segment of our community.
It also occurred to me that, rather than doing a true "podcast," the show might be accessible to a wider audience simply uploading it as an audio file to YouTube.
2. Annual Awards
As far as I know, the ME/CFS community doesn't have any awards to....um...award. I've seen a few bloggers who have won general "health blogger" awards, but nothing for our community specifically. In my view, the awards wouldn't have to be limited to just bloggers. We could award researchers, journalists, foundations, doctors...whatever we can think of.
I haven't decided yet how the nomination process would work (maybe open submission by email), but I would want the final voting to be open to all members of the community. That way, the winners can have the satisfaction of knowing that they were chosen by the community at large. The website could briefly profile all of the nominees before voting begins.
I wouldn't want to present the awards, alone, from my humble little blog. Rather, I'd either set up a separate foundation with it's own website, or partner with a site that has more name recognition in the community. As for the name of the awards, most likely, we might simply take the name of my partner's organization and add an "s" to the end, ala Emmys, Grammys, Tonys, etc.
No money would come with the awards—just an honor. At first, the awards might not mean much to the recipients, but as the years pass, I hope the name recognition would catch on and the recipients would receive it with pride.
Off the top of my head, a few categories to consider:
-Achievement in ME/CFS research
-Excellence in ME/CFS patient care (by a doctor or other health care professional)
-Patient advocate of the year
-Blog post of the year (journalistic style)
-Blog post of the year (personal/opinion)
I haven't decided yet if the awards should include some sort of tangible plaque or trophy, or if we would simply inform the winners of their recognition and maybe forward an electronic badge or emblem that can be posted on their website. I'm leaning toward the latter because, well, it's free.
3. Supplement Exchange
I of course can't take credit for this idea. It has been talked about on forums a few times that I can remember. But as far as I know, it has never gone past the "idea" stage.
There are an enormous number of us with large boxes of unused supplements at home. Often we've tried one or two capsules from a $30 bottle and realized we don't react well. If that occurs two, three, four or more times, suddenly we've got a lot of money tied up in inventory. Wouldn't it be great if we could all exchange our inventories for something else we can use?
Ideally, we'd want a separate website just for this function, as opposed to a messy sub-forum or some other site that's not tailored to this particular use. Each user has an account profile, which they populate with the names, expiration dates, and approximate quantity remaining of each spare supplement they have. If one is looking to make a trade, they log in, search for someone with the supplement they need and propose a trade. Both parties simply pay to ship the supplement to the other person.
Naturally, there would be a temptation by some to list and exchange prescription drugs, but for legal reason, this would not be allowed.
A downside to this idea is that I have absolutely no computer skills, so I'm really just posting this in the hopes that someone might take this idea and run with it!
Wednesday, July 31, 2013
That precarious feeling
Do you ever get the feeling that you're balanced precariously between crashed and not crashed? Like you could tip in either direction at any time?
I've been feeling that way ever since about two weeks ago when I caught a mild bug. Unlike other bugs, it was actually so mild that it didn't cause an immediate crash. The only reason I know that this bug is still hanging around is that it has left me with constant sniffles and post-nasal drip. That and the return of an old symptom that I thought I had rid myself of after the first year with ME/CFS: morning flu. During my first year of illness, I would get this particular flu-like feeling that would surface in the morning hours between 7 and 9 a.m. Then it would usually just dissipate. Well that's back too.
So I almost feel like a spectator to my own health. Of course I've upped the zinc and vitamin C doses (still within safe limits), and tried some other tricks, but nothing has resolved. It's as if all I can do is wait and watch to see which direction I tip.
_________________
This past weekend, my wife and I took our kids to my parents' house to spend some quality family time. Everything went well until Sunday when, out of nowhere and within minutes, my wife became ill with a severe flu. It came on quite strong, with body-racking chills and a high fever. So we drove home soon after the flu's onset and prepared to enter into a sort of survival mode just to get through the week.
It's not even 3 days later now and Mrs. Calvin is back on her feet now—it was a 48 hour bug—but two things struck me while she was ill.
First, for a brief 24 hour period, I was actually the more functioning, capable member of the team, and boy did I relish every second of it. It was like I was trying to make up for two+ years of her helping me when I'm down.
The second thing was how quickly Mrs. Calvin recovered. Within about 30 hours, she had rocketed past me on the functionality scale. By Tuesday she was attending an important meeting and supervising our daughter's swim lesson. All the while I'm cringing and trying to cajole her to cancel her obligations and rest up. Mostly, she shrugged off these suggestions and was no worse for the wear.
It made me realize that in two short years I seem to have lost all perspective of what it's like to have a normal, functioning immune system. I used to be like her too. No flu or cold could keep me down for more than about 48 hours. All that seems like a different lifetime.
I've been feeling that way ever since about two weeks ago when I caught a mild bug. Unlike other bugs, it was actually so mild that it didn't cause an immediate crash. The only reason I know that this bug is still hanging around is that it has left me with constant sniffles and post-nasal drip. That and the return of an old symptom that I thought I had rid myself of after the first year with ME/CFS: morning flu. During my first year of illness, I would get this particular flu-like feeling that would surface in the morning hours between 7 and 9 a.m. Then it would usually just dissipate. Well that's back too.
So I almost feel like a spectator to my own health. Of course I've upped the zinc and vitamin C doses (still within safe limits), and tried some other tricks, but nothing has resolved. It's as if all I can do is wait and watch to see which direction I tip.
_________________
This past weekend, my wife and I took our kids to my parents' house to spend some quality family time. Everything went well until Sunday when, out of nowhere and within minutes, my wife became ill with a severe flu. It came on quite strong, with body-racking chills and a high fever. So we drove home soon after the flu's onset and prepared to enter into a sort of survival mode just to get through the week.
It's not even 3 days later now and Mrs. Calvin is back on her feet now—it was a 48 hour bug—but two things struck me while she was ill.
First, for a brief 24 hour period, I was actually the more functioning, capable member of the team, and boy did I relish every second of it. It was like I was trying to make up for two+ years of her helping me when I'm down.
The second thing was how quickly Mrs. Calvin recovered. Within about 30 hours, she had rocketed past me on the functionality scale. By Tuesday she was attending an important meeting and supervising our daughter's swim lesson. All the while I'm cringing and trying to cajole her to cancel her obligations and rest up. Mostly, she shrugged off these suggestions and was no worse for the wear.
It made me realize that in two short years I seem to have lost all perspective of what it's like to have a normal, functioning immune system. I used to be like her too. No flu or cold could keep me down for more than about 48 hours. All that seems like a different lifetime.
Saturday, July 20, 2013
My shockingly poor circulation
In ME circles, keep seeing articles and research about poor blood circulation. I wrote about one recently. For me personally, this is a key issue, but I can't figure out how it ties into my other symptoms. I just know that it does tie in...somehow.
It all starts with the arms and hands for me. For others, it seems to start with the legs and feet. This is a problem that has become much more prominent for me in the last 6 months.
What happens? I can't have my arms or hands anywhere above the level of my heart for more than a few seconds without them becoming tingly and numb. For example, do you ever lean back in a chair, interlace your fingers behind your head in order to relax? When I do this, my arms and hands immediately being to tingle and fall asleep.
And my arms don't even need to be that high for this to happen. For instance, when I do light yoga, even holding my arms out to the side at about chest level (the same level as my heart)--as in Warrior 2 pose--I experience the same problem. When you think about it, that is insanely poor circulation. How can my heart not even mange to pump blood horizontally to the hands that are two feet away?
Some people believe that the brain fog we experience in ME/CFS is less from inflammation as it is from poor blood flow to the head. I'm not sure I agree with that, but I do think that inflammation is somehow also involved in these poor circulation issues. I know this because when I'm crashed and feeling overall inflammation, my hand numbness gets even worse.
I haven't spoken with many others who specifically experience the poor circulation in the arms and hands, but I'd like to hear from others how & where you have poor circulation.
I'll also leave you with a few links to other articles & studies about poor circulation in ME/CFS, besides the one linked above:
Incidentally, the one treatment that I have found to help with poor blood flow is D-Ribose. When I forget to take D-Ribose or am late with a dose, the problem is worse.
It all starts with the arms and hands for me. For others, it seems to start with the legs and feet. This is a problem that has become much more prominent for me in the last 6 months.
What happens? I can't have my arms or hands anywhere above the level of my heart for more than a few seconds without them becoming tingly and numb. For example, do you ever lean back in a chair, interlace your fingers behind your head in order to relax? When I do this, my arms and hands immediately being to tingle and fall asleep.
And my arms don't even need to be that high for this to happen. For instance, when I do light yoga, even holding my arms out to the side at about chest level (the same level as my heart)--as in Warrior 2 pose--I experience the same problem. When you think about it, that is insanely poor circulation. How can my heart not even mange to pump blood horizontally to the hands that are two feet away?
Some people believe that the brain fog we experience in ME/CFS is less from inflammation as it is from poor blood flow to the head. I'm not sure I agree with that, but I do think that inflammation is somehow also involved in these poor circulation issues. I know this because when I'm crashed and feeling overall inflammation, my hand numbness gets even worse.
I haven't spoken with many others who specifically experience the poor circulation in the arms and hands, but I'd like to hear from others how & where you have poor circulation.
I'll also leave you with a few links to other articles & studies about poor circulation in ME/CFS, besides the one linked above:
http://www.cfids-cab.org/cfs-inform/Brainscans/yoshiuchi.etal06.pdfThen there's the question of how poor blood circulation relates to low blood volume, (which is more the issue with POTS, OI, and sometimes tachycardia) if at all. They are often treated as separate issues in the medical literature, but then again, it's hard to see how low blood volume wouldn't contribute to poor circulation.
http://www.cfids-cab.org/MESA/cardiac.html
http://www.webmd.com/chronic-fatigue-syndrome/news/20030414/tricky-heart-may-cause-chronic-fatigue
Incidentally, the one treatment that I have found to help with poor blood flow is D-Ribose. When I forget to take D-Ribose or am late with a dose, the problem is worse.
Update to the surfing post
Recently I wrote a post about my first, very mild attempt at surfing since coming down with ME/CFS. Afterwards, my big concern was: would it make me crash?
My attempt at surfing was on Sunday. I was doing fine...even great...for the first half of the week. Of course, nearly every muscle in my body was sore because surfing uses uncommon muscle groups. But it was a good kind of sore--something I've "sorely" missed in the last couple of years. (Sorry, that was bad).
At about Midday on Wednesday, I began a two day mini-crash, but I don't think it had anything to do with surfing. It was, once again, due to a bug going around my family, most likely brought home by my two-year old daughter from daycare.
So this gives me encouragement to possibly try surfing a little longer the next time I'm feeling decent. Thanks for reading.
Monday, July 15, 2013
What Happens in Vagus, Stays in Vagus: ME/CFS a viral infection of the vagus nerve?
This article from the HHV-6 Foundation website describes recent research suggesting that ME/CFS may be due to viral infection of the "vagus nerve," a cranial nerve that controls all sorts of important functions like heart rate, blood pressure, and the ATP cycle. (See, Wikipedia here)
"Herpesviruses and certain intracellular bacteria establish latency in the vagus nerve and reactivate during periods of stress or illness, causing the release of proinflammatory cytokines. HHV-6 is a highly neurotropic virus and potent inducer of cytokines such as IL-6 and NFkB, which many groups have proposed as an etiological theory for the role of HHV-6 in neurological conditions such as seizures and epilepsy. If this low-level “chronic” infection is localized to the vagus nerve it would be undetectable in the plasma, but could be demonstrated through analyzing tissue biopsies of the vagus nerve, VanElzakker suggests. HHV-6 is well known for invading the hippocampus and other parts of the limbic system, and also establishes residence in the human sensory ganglia along with other neurotropic herpesviruses including HSV-1 and VZV (Hufner 2007)." HHV-6foundation.orgOne problem with testing this theory is that viral infection of a nerve cannot be detected through simple blood plasma samples. That appears to be why the researcher behind this theory, Michael VanElzakker, proposes testing the theory by taking tissue samples from PWMEs who have "died prematurely from other causes." Apparently, what happens in vagus stays in vagus.
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.
_____________________
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.
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