Going Anti-Viral

I’ve spent the last several weeks in a really dark place — literally a dark room with covers on the inside and outside of the windows. If you regularly read this blog then you may be wondering how that is different from the way my life has consistently been over the last several months. So let me say: The difference is big. I’ve become so sensitive to light that I’m back to wearing tanning goggles (can’t find my pink ones) and washcloths to shield my eyes from even subtle amounts of light. But lately light hasn’t been the only issue I’ve faced.

I need someone, usually my mom, to brush my teeth for me and do so many other things like opening pill bottles to take my medications or putting on deodorant or swabbing my IV with isopropyl alcohol. I’ve grown accustomed to doing these things for myself as my recovery has progressed since 2015 when I was at my sickest. For me the difference between brushing my teeth and having to have someone do it for me is hard to equate to the struggles of healthy people, but it’s sort of like when a middle-aged adult loses their job and has to move in with family and rely on them for food and other necessities.

It’s a total loss of autonomy. So much so I find myself analyzing the scarce enjoyment I find each day — the feel of running water cascading over my face, new flavors in my mouth, a brief glimpse outside at dusk. Even still, it feels as if all I do is eat, sleep, bathe, and stare at the art on my walls. Probably because most days that is in fact all I do. Sometimes if I’ve been looking at the wall too long, then shift my focus to a bare wall, my vision will actually project the outline of the frames onto the blank canvas. It’s a trip, like one of those optical illusion books from middle school.

But the most astonishing part of my diminished quality of life is that I feel I should be grateful for what I still have. I feel like I should be thankful for every moment that I’m not too miserable to concentrate on my own thoughts. And I am! I’m incredibly grateful, but that mindfulness is hard to sustain when things don’t get better. I’ve been sicker in previous years, my quality of life worse, but the little joys I still cling to are hardly a consolation for the parts of my life that have been stolen from me.

I will say, however, that writing this post is a joy for me. And if you’re wondering how I’m able to type these words but can’t brush my teeth, well, it’s hard to explain … It has taken me at least a month to write this post (you may have noticed my absence online). Some days I have only been able to craft a few words. But, regardless of the difficulty and patience it has taken to write this post, I am so grateful to still be able to express myself.

Looking For Comfort

This latest relapse feels like I’m descending back down into a dark yet familiar mine shaft and I’ve lost all sense of direction. I don’t know which way is forward, maybe I’m too far down to tell. This feeling has brought me back to a memory I have from when I couldn’t communicate at all. In mid-2015 my caregiver found an Internet article about Whitney Dafoe, who, like me, is among the sickest patients with MECFS. The article quoted his description of what happens when his health takes a dive. As my caregiver read the article to me, my eyes covered by a thick blanket to block out the light from her iPad, I found a rare bit of comfort knowing that there was someone out there going through something similarly traumatic.

It is this ongoing trauma that is the hardest part of chronic illness for me. How can one heal and move on in life if the fight is perpetual? Multiple doctors have asked about the trauma I experienced before getting sick–a fatal car accident among other things — but nothing I endured prior to getting sick even remotely compares to the trauma I’ve experienced through illness. Not being able to ask for help going to “the bathroom” is among the most traumatic things I’ve experienced; needing that kind of help at all is traumatic enough. Not being able to tell someone you love them, despite your best efforts, is traumatic as well, albeit in a less essential way.

Through talking to so many of my fellow patients, I’ve come to realize that there are two things we are all searching for: comfort and answers to our poor health. Mostly, we just want to know that our circumstances are not unprecedented.

So naturally, during this latest crash of mine, I’ve been looking for comfort and answers. I’ve been wondering: What caused this relapse? How can I prevent it from happening in the future? And, of course, is there anyone out there who has experienced something similar?

You may have noticed from my previous blog post that back in June I got out of bed for the first time in nine months. That was only last month and it has taken me several weeks to write this so, really, the crash started almost immediately after that milestone. Or at least that’s when I started to notice the decline in my condition. As subtle as it was at first, to go from getting out of bed on my own to not being able to brush my teeth in a matter of only a couple weeks has been an abrupt shift. It has taken a lot of adaptation, mostly on the part of my caregivers who now have to help me much more than they used to.

Meanwhile, I’m frustrated and angry that there is continuous harm going on inside my body, I can feel it progress and regress and repeat, and I have no idea what is causing it. It’s surreal to feel such havoc inside my body and not know its origins; is it viral? Metabolic? Genetic? Something else? It’s like finding a pile of shit on your front porch and not knowing who or what left it there.

Nonetheless I’ve been combing the recesses of my mind for potential causes of my poor health. And after lots of thought, I may have figured out the source of my relapse, which, if true, could explain a lot of the ups and downs I’ve had over the last year.

What Happened?

In August 2017 my health gradually started to decline after a long upswing in my recovery. During this upswing I was on two main medications — Valcyte (anti-viral that treats cytomegalovirus) and hydrocortisone to correct my adrenal dysfunction. Around the time I started to decline, I had stopped taking both of these medications because, well, I hate them. These are synthetic, toxic pills that have been going into my body every day for the last few years and, however naively, I thought I didn’t need them anymore. Perhaps that’s why it took six weeks of feeling terrible for me to decide to go back on them. But, looking back, it seems the damage had already been done. From August to December of 2017 I went from going outside in my wheelchair every day and speaking at a nearly normal volume to being completely bedridden and unable to speak at all.

But with the medications back in my system I slowly started to improve again, or at least stabilize. By April 2018 I was back to sitting on the edge of my bed a few times a day and, as I mentioned earlier, in June I got out of bed for the first time since that crash in late-2017.

But because I’m stubborn and sometimes just oblivious to the possibility of history repeating itself, I made almost the exact same mistake. I was regularly getting out of bed, feeling stable again, so what did I do? Stopped taking the meds, because I hate them, of course. They give me insomnia, make me constipated (TMI?), and put on weight even though I eat fewer than 1,800 calories a day. My skin is always greasy and, oh yeah, the meds make my tongue “hairy.” Basically they’re just about the most fun one can have while swallowing little toxic nuggets twice a day. But apparently, they also keep my health somewhat stable and improve my quality of life. So … I guess I need them.

Though I should say, particularly in regards to Valcyte, that top MECFS researchers have scattered opinions on the idea of viruses being present in the disease. Some believe it’s a major issue while others strongly believe that there is no viral component to the disease. The latter makes no sense to me since countless patients, including myself, have tested positive for active forms of Epstein Barr, cytomegalovirus, and several other viruses. But perhaps part of the confusion is because there may be different subsets of the disease and still no standard diagnostic test to ensure the people with MECFS who are being studied actually have the illness.

It seems likely, in my unscientific opinion, that the active presence of viruses in the body could be a major factor in MECFS. Anti-viral medications like Valcyte work by preventing viruses from replicating. This is why it’s important to keep a constant dose of the medication in the body and could explain why my condition deteriorated after only a couple weeks without the drug — the virus had a chance to replicate and take over my body once again.

Still, this theory of mine is just that — an educated guess, a hunch based on previous patterns of how I felt in relation to my consumption of Valcyte. In other words, I don’t want to send anybody on a wild goose chase to try what I not-so-concretely believe helps my health stay afloat. But I know how it goes: We’re all human guinea pigs for each other, so I do encourage those with similar conditions to use my experiences as research.

Just know that I have no definitive proof of which medication is the most essential to me. But if it turns out that Valcyte is indeed fueling my recovery, I will be interested to see to what extent. Is there a cap to how much I can recover thanks to Valcyte? I imagine so, as MECFS has to be much more complex than just the active viruses in my body.

Nonetheless, as I continue to fight a seesaw battle for health and my gut tells me that Valcyte is the most crucial medication that I’m currently taking and for a few reasons:

  1. It takes time to kick in, which may explain why it has taken me so long to recover now that I’m back on it.
  2. When I relapse I always feel like a virus has jumped into action inside my body.
  3. Every time I’ve stopped taking Valcyte my progress has dissolved.

Now keep in mind that along with Valcyte I concurrently take hydrocortisone and receive saline infusions. So perhaps I need a cocktail of these three treatments to keep my health stable. Only time will tell and, unfortunately, it may be several months before I can fully confirm that going back on Valcyte has brought me up to my baseline. Even then I’m sure time and my stubbornness will erode my confidence in the medication, leaving me second guessing my judgment once again. But one thing I promise: If I get back to my baseline in the next year, I will not stop taking Valcyte, no matter how much I hate it.


1. Thanks for reading!

2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would LOVE to see you rocking some Show ME the Money apparel.

3. If you would like to donate to support this blog I would be equally grateful!

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A Personal Plea To Protest 

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I’ve never been one to protest, well, unless you count not shopping at a certain large retail store whose name rhymes with Falmart. So what I’m about to ask of anyone reading this might seem a bit hypocritical. But that’s okay, I’m gonna ask anyway.

Those of you who have been privy to my struggle with ME/CFS for the last six years probably didn’t know how bad things would get, I certainly didn’t. It’s a dangerous, scary, and misunderstood disease that not only needs more awareness, it also needs more private and government research funding.

Before I got sick I would have given priority to a disease like Parkinson’s or MS, but now I know the exact serious of MECFS; it nearly killed me. For that reason I ask you and anyone you are willing to share this post with, to donate to one of the amazing organizations busting their butt to better understand this mysterious disease. I personally recommend the Open Medicine Foundation or Blue Ribbon Foundation. Both are at the forefront of what needs to change in our healthcare system in order to cure MECFS.

Lastly, and perhaps most importantly in the immediate, is protesting on September 27th. This Tuesday people from all over the world will unite as part of the Millions Missing campaign. 25 cities scattered around the globe will feature protests. Here in the U.S., protests will be held everywhere from Boston and D.C. to Seattle and San Francisco (City Hall at 11 am). It is expected to be the largest and most widespread MECFS protest ever. I hope you will participate. If not for the cause itself, then for me or one of the many lives this horrible disease has tainted. In many cases, including my own current situation, attending the protest is physically impossible. That’s why we need your help.

Now I’m not asking you to kneel during the national anthem, or to stop eating solid food for 18 months, I’m merely asking you to be present for 10 minutes out of your day. And if you can’t make it to protest in one of the major cities, perhaps you can do something in your hometown like tie a blue ribbon to your car or mailbox, or sport a bracelet on your wrist.

At the very least, I hope you will take a few seconds on Tuesday to first remember how much this disease truly sucks, and then to post a message on your social media accounts using the Millions Missing hashtag (#MillionsMissing).

For any or all of the aforementioned participation I thank you in advance. It is these tiny gestures that appeal to my emotions and touch me the most.

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A One Man Nudist Colony 

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I was completely naked for the better part of an entire year. I wore no clothes. None.  Now, before you file this post away on your “too much information” (TMI) blacklist, first let me promise to keep the intimate stuff to a minimum. That being said, some stuff may be unavoidably revealed. It’s kind of inevitable when talking about being naked.

What people don’t often realize, and perhaps they don’t want to, is that sick people spend a ridiculous amount of time naked. Why? It feels sexy. No, I’m joking (although it does feel a little sexy). There are actually a number of legitimate reasons. Putting on clothes can take a lot of energy, muscle strength, flexibility, and joint mobility. In my case, an obscenely impaired blood pressure and blood volume made it nearly impossible for me to move my body enough to get clothing over my head let alone my extremities.

Another reason is hygiene. Even if I was able to get clothes on my body, the physical repercussions would have been so intense it’s safe to say those clothes wouldn’t have come off until I had regained my strength days, or even weeks later. And that, of course, would mean bathing with clothing on, which I’m not sure if you’ve tried, but it’s just about the least amount of fun you can have with clothes on, and is also probably the least amount of fun you can have while bathing. How do I know, you ask? Oh, I tried it. A few times. And I stubbornly learned that bathing with clothes on, and then leaving them on, is undeniably more miserable than smelling like a dumpster for a week.

I also briefly tried wearing button down shirts. I soon ran into the trouble of getting my arms through the sleeves, so I had someone cut the sleeves off a bunch of old Tommy Bahama shirts from the thrift store. And just like that I looked like Rick “Wild Thing” Vaughn from the movie Major league, rocking a sleeveless tuxedo. Unfortunately it was the tacky floral patterned shirts made for middle aged men that ultimately turned me away, and I soon returned to my life as a nudist.

So I resolved to remain in my own personal nudist colony for a few more months until IV treatments helped my blood pressure, and in turn, allowed me to finally keep some damn clothes on. And I have to say it felt really good. I felt like a human again. So every day after washing up, I would struggle to get a pair of boxers around my hips. This was particularly difficult because I couldn’t lift my hips off the mattress.

I should say, however, prior to resuming my life as a clothed person, I did occasionally allow visitors into my den of nudism. But these guests, fortunately or not, were always wearing clothes. And sorry to ruin the facade, but I was almost always covered by a sheet. Darn.

Still, even in the moment, the ridiculousness of the situation was ripe and often very comical. Once, during a visit from someone very special, I felt the need to have a little fun. No, not that kind of fun. Get your mind out of the gutter. The visitor was a good friend from college, during which time we had a running joke about helping each other bleach a certain unmentionable body part notorious for getting soiled. You don’t like where this is going, do you? Yeah sorry, so much for leaving out the intimate stuff. Maybe I’m the one who needs to get his head out of the gutter.

So my buddy arrived, and naturally the first words out of his mouth were, “Hey man! I’m here for the bleaching.” Now, normally I would have gone with the joke and immediately simulated getting undressed while telling him I was ready for the procedure, but there were two problems: I couldn’t talk and I was already naked. So instead I shifted the sheet off my upper thigh, and then, after five solid minutes of tracing letters on his hand, I was able to convey that I was already naked and ready for the bleaching. “Bring on the bleach!” I said.

Ha hmm. Anyway, where was I going with that story again? Yes, right, I was naked for a year. But recently I started feeling better and I’m once again back to wearing clothes. I have discovered linen shorts, which are just about the comfiest things, besides pajamas, that I’ve ever worn. And I’ve found that my old tank tops from the gym are much easier to get on than a normal t-shirt or, say, a Tommy Bahama shirt with pink hibiscuses.

Overall, I must say, it’s wonderful to wear clothes again. Why? It feels sexy, of course.