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.
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:
- 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.
- When I relapse I always feel like a virus has jumped into action inside my body.
- 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.
BEFORE YOU GO…
1. Thanks for reading!
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