Life Without an IV

Before all of this coronavirus craziness started, I had an IV in my arm. Over the last several years I’ve gone from using a small peripheral IV in my forearm to, more recently, using a midline IV — a long vein-dwelling catheter that ran from my elbow to my armpit.

I started with the peripheral IVs because I was much sicker then, and they were the only ones that my weakened body could handle. I had initially tried a PICC IV, which ran inside a vein from my arm to my heart. The thought alone of a little plastic tube resting a couple centimeters from my heart freaked me out. And then, when it was inserted in my arm, it became extremely painful throughout my chest and shoulder. So I took it out and tried the peripheral IVs, which were far less painful but only lasted a few days at a time. They were, as it seemed, a temporary solution to a long term problem. Eventually I tried a midline, which was similar to the PICC but didn’t make the turn through my armpit to my heart, and consequently was less painful. The other good thing about the midline was that I could leave it in for a couple months at a time.

The purpose of these plastic twigs in my arm was to get daily infusions of saline and vitamins. Because I have been deficient in a hormone called arginine vasopressin, it became difficult, sometimes even impossible, for me to hydrate through oral consumption of water and electrolytes, thus the need for IV fluids.

Then the pandemic hit and, because of my compromised immune system, I couldn’t risk getting the coronavirus from a nurse or doctor who would have to place the IVs in my arm. So, back in February, I stopped getting the IVs and infusions, and I’m happy to report that my health has, for the most part, remained steady.

On good days I’ve been well enough to put my feet on the ground a few times and try to stand up. Although this hasn’t been unprecedented in my recovery so far — there have been times in the last few years when I’ve been able to do this — it’s remarkable that I’m well enough to do it without getting IV fluids. This is partly because the IV fluids increase my blood pressure and volume, on top of hydrating my body.

It’s hard to say exactly why I’ve been able to sustain my recovery without IV fluids, mostly because, again, I don’t want to risk getting the coronavirus by having a nurse or phlebotomist do bloodwork to see what my vasopressin and cortisol levels are.

What I do know, however, is that I’ve been drinking lots of water and taking electrolyte supplements, which as I mentioned, hasn’t worked in the past but may be helping now. Or maybe my body has undergone a transformation in the last few years, partially healing the functional impairments that were keeping my body from adequately hydrating itself.

Whatever the reason is, I’m grateful that my health is stable without the IVs. I’m sure it would help if I could still do infusions, at least occasionally, but given the circumstances, things could be much worse.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. For those who haven’t heard, my memoir, WHEN FORCE MEETS FATE, is going to be published in January.

You can read samples chapters, add it on Goodreads, and preorder it through many online retailers, in both print and ebook. The audiobook will be available for preorder this fall. Here’s a list of places to order the book (by country):

US: Amazon, Apple, Barnes and Noble, BooksAMillion, Book Depository (ships worldwide for free!), Indiebound, BookShop.

Canada: Amazon, Kobo (soon)

UK: Amazon

Australia: Booktopia

Mexico: Amazon (Sorry, no Spanish translation yet)

Germany: Amazon

Norway/Sweden: Book Depository, Adlibris

Brazil: Amazon

A Little Energy DOESN’T Go a Long Way

If there’s one thing that I’ve struggled with the most while I’ve been sick, it’s finding a balance between doing things I enjoy and doing things that don’t make me sicker. It’s especially hard when almost everything I do either steals my energy, fills my muscles with pain, or makes me feel like I’m going to puke and pass out. But I’d rather live this way, trying to find enjoyment in the few things I can still do, than living too cautiously and missing out on everything.

Trying to find this balance is by no means a new struggle for me. Over the last decade my life has been consumed by it as I’ve constantly had to gauge my ever-changing abilities. In the process, my stubbornness has propelled me to do things, often stupidly, that are bad for my health, though good for my soul. And I’m not talking about downing shots of whiskey or smoking packs of cigarettes. I’m talking about seemingly innocuous acts that a healthy person wouldn’t think twice about, but because I’m sick, are things that invariably prove detrimental to my health.

One such instance happened several years ago when I was still well enough to live on my own. I was, for the most part, self-sufficient, renting a little studio in Santa Cruz. I could make my own food, do my laundry, and even ride my bike around the neighborhood.

One day I rode my bike to the grocery store, and on the way home with bags of heavy groceries attached to the bike, I saw a bunch of succulent plants discarded across the sidewalk. As silly as it sounds, this was one of the moments when I had to choose between doing what I enjoyed and doing what was best for my health. My body was already hurting from riding to the store and walking up and down the aisles, but I wanted to stop and pick up the succulents so I could propagate them in my own little garden at home. I was too sick for extra curricular activities though. My body already hated me. So, wisely, I pedaled home without stopping to gather the plants.

Back at my studio, I unpacked the groceries and collapsed on to my bed. My entire body hurt–my lungs burned, my muscles throbbed, and, of course, my mind yearned to do more. So, unwisely, I got back on my bike, rode down the street, picked up the succulents, and brought them home. By then my body had entered into what I sardonically call “fuck it mode,” when I feel so sick and my body hurts so much that I know I’m going to pay a hefty price for it later, so I just say “fuck it” and carry on because the damage has already been done.

After entering fuck it mode, I rode back to my studio, a jumble of succulents draped over my handle bars. Then I hobbled to my garden and stuck the plants in the ground, and finally, I swear, collapsed on my bed.

It’s hard to say what kind of long term damage that little excursion did to my body. But I can say for certain that it wasn’t the only time I pushed my body in such a way. Both before and after I got sick, I often did too much when I should have been resting. When I was healthy, I’d do an extra hour of cardio at midnight after a three hour workout. When I was sick, I’d go for a hike after I had struggled to walk to the bathroom only a day before. It wasn’t that I never listened to my body, I did, I listened to it all the time, I just never listened when it told me to rest.

Less than a year after my misadventure with the succulents, I became so sick that I couldn’t speak or eat or even sit up. And now, while I’m doing a bit better, I still find myself faced with similar dilemmas about how to use my extremely limited energy.

Though lately I’ve had enough strength and energy to do more than just survive, which is sort of a miracle considering how sick I’ve been. My health has improved enough that I don’t exactly know what to do with myself. For the longest time, all of my energy went to laborious tasks like brushing my teeth and bathing. Now I can do those things and not need to crawl into a fetal position and recover afterward. So I’ve taken up some new (and old) hobbies like playing Animal Crossing, watching movies, and even strumming on my ukulele.

I used to play around on the ukulele and the guitar, but as I got sicker, I became too weak and the exertion of playing left my body hurting for days. I remember wondering why my hands and forearms hurt so much, then I connected the dots and realized that every time I’d have a practice session, it would leave me in pain.

So, for now, I’m going slow, sometimes just plucking the strings for literally a few seconds before putting the ukulele away. And while it brings me joy to be able to do this again, the possibility that I’m doing too much is always lingering in the back of my mind. I constantly worry that I’ve pushed myself too far doing something that doesn’t really matter outside of my own stubbornness–the need to find enjoyment in limited possibilities, the urge to do what’s best for my body, not my soul. But maybe that’s a good thing, or at least not a bad thing. Maybe it’s all part of finding the right balance.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. GOOD NEWS: My memoir, WHEN FORCE MEETS FATE, is now available for preorder on Amazon (US, UK, Canada, Australia, etc.), B&N, and Book Depository. If you’ve already ordered it or plan to, the book will be published in January and all copies will be delivered then. We’re currently working on a new cover for the book (that’s why there’s no thumbnail on the listing yet). I will be unveiling the cover soon and I’m also working on the audiobook, which I’m excited about. I’ll have some big announcements in the coming weeks and months leading up to the release of the book. So stayed tuned!

A Day Late and a Hundred Million Dollars Short

Yesterday was International ME Awareness day and, for the most part, I missed it. In years past I’ve participated by writing blog posts and being active on social media, pestering politicians for the $100 million dollars in government research funding that we need and advocating for patients with ME/CFS. But this year I didn’t have my act together. It may have been because of the pandemic or it may have been because I’ve just lost hope lately.

The truth is it’s hard to be hopeful that a cure for ME/CFS will be found when the entire world is looking for a cure for a different illness.

Even so, some people have made the case that the COVID-19 pandemic will actually benefit people with illnesses like ME/CFS, that research may show that the coronavirus causes or contributes to lasting post-viral symptoms that are hallmarks of ME/CFS. And there may be something to that. I hope there is. It would almost certainly mean more research funding for ME/CFS, more treatments, and maybe even a cure. But that’s hard for me to imagine. I want to be that optimistic, I really do, but I’m also tired of getting my hopes up. I’m tired of thinking something will be a breakthrough and then watching it turn into a dud.

In the decade that I’ve been sick there have been countless times when I’ve put all of my faith in a potential breakthrough only to see it fizzle. Some of these things have been realistic, others have been far fetched, but they all have been failures.

A couple years ago, for instance, someone in the ME/CFS community went on Facebook and started posting about a new drug that was in clinical trials and he was sure it was going to be the answer for patients with ME/CFS. The drug proved to be inefficacious, but the worst part wasn’t that my hopes had been crushed, it was that hundreds of people likely saw the post and latched on to it for hope like I did. It’s a vicious cycle of hope and broken dreams.

I guess that’s why the search for a cure for ME/CFS through the global COVID response feels especially unrealistic. Call me pessimistic, but suddenly finding a cure for a disease that has seen little progress in the last several decades seems unlikely, no matter how lucky we get. And it seems even more unlikely when you consider that any progress that is made towards a cure for ME/CFS in the next couple years will likely have to be tied to coronavirus research since that is what the medical and science world is focused on right now.

I’m not saying it’s impossible, I’m just saying that it requires a level of optimism that I’m struggling with at the moment. I guess you could say that I’m hopeful but not getting my hopes up. As I recently wrote on Twitter, maybe the intense focus on the coronavirus will somehow further the research into other viruses like Epstein Barr and cytomegalovirus, which often contribute to cases of ME/CFS. The more I read about patients with coronavirus, the more I wonder if the mechanisms of ME/CFS, which we know little about, may end up being similar to those of the coronavirus. Maybe it will take something as unprecedented as this pandemic to produce an even more unprecedented outcome for ME/CFS patients. For the sake of everyone with this illness, I hope that the one time I don’t get my hopes up we will finally get the breakthrough we’ve all been waiting for.

BEFORE YOU GO… 

1. Thanks for reading!

2. Some GOOD NEWS: My memoir, WHEN FORCE MEETS FATE, is now available for preorder on Amazon (Canada, Australia, etc.), B&N, and Booktopia. If you’ve already ordered it or plan to, the book will be published January 2021 and all copies will be delivered then. We’re currently working on a new cover for the book (that’s why there’s no thumbnail on the listing yet). I will be unveiling the cover before its published and I’m also working on the audiobook, which I’m excited about. I’ll have some big announcements in the weeks and months leading up to the release of the book. So stayed tuned!