Why I’m Staying Awake for My Health Tonight (and Why That Might Not Be OK)

I’ve got to be perfectly honest here. This is not my first time writing an article in the middle of the night. Sometimes I’ve written articles as late as 2 or 3 in the morning, so this is by no means a new experience for me. However, there is a unique reason why I am writing this in the middle of the night. I’ve struggled with insomnia and sleep problems, to one degree or another, for many years now. I had those issues in high school, and coming to college really didn’t help. Middle of the night study sessions, writing papers, and, I hate to say it, there was a party or two that I would stay up late for. All those things combined don’t help create a healthy sleep pattern in the long-term. Even one night of a disturbed sleep cycle can throw off a regularly developed pattern that may have been in place for a long time. Now, this is not true for everyone. People with particular sleep disorders or mental illnesses are at a higher risk for minor disturbances in sleep patterns becoming a larger problem. But tonight, my lack of sleep is not a byproduct of my mental illnesses or physical disabilities but is rather for the purpose of treating my physical disabilities.

If I’ve said it once I’ve said it a thousand times on here. I live with a number of mental illnesses, but my primary health concern right now is a movement disorder that I experience, and yet have no name for. I’ve had almost every test conceivable done to explore what this could be, but nothing has shown up to potentially explain my symptoms. My neurologist and I are somewhat running out of options for exploratory procedures to determine what is going on with me. We’ve exhausted almost every possible avenue, and over the next couple of days, we will be trying what are probably the last options. After those, the focus of my medical journey will likely no longer be exploration and trying to find names to diagnoses, but rather finding treatments for the mysterious symptoms I have. But you may be wondering still, why am I writing this in the middle of the night? What does that have to do with this journey of finding an answer to my movement disorder?

Like I said, tomorrow and the day after, I’m going to be having what are probably the last viable procedures that could produce answers to my issues. A very quick summary of my symptoms: eye-related tics (hard blinking, uncontrollable rolling eyes, etc.), difficulty walking to the degree that I need a cane, and the most debilitating symptom, dystonia in my arms and hands. Dystonia, for those of you who don’t know, is uncontrollable muscle contractions. My arms will bend and flex and get stuck because my muscles are just contracting uncontrollably. The symptoms have been progressing and getting worse, so a lack of a diagnosis has been frustrating. Especially since a formal diagnosis not only provides some comfort and affirmation but also lays out a clearer idea of what potential treatments are.

The procedure I am having tomorrow is what is keeping me up tonight. I’m not nervous or anxious about getting the procedure done, so don’t read that as I am lying awake fearful for the procedure. Rather, me staying awake is a necessary element to the procedure being successful. I am having a form of a brain scan done called electroencephalography (EEG). Now, I am on the verge of finishing my undergraduate degree in neuroscience, so I could go on a long tangent of the details of this procedure but I will spare you that. In summary, an EEG measures brain wave activity by using several electrodes put onto your head. EEG is not the most modern brain scan technique there is, but it can still be very informative, especially in cases where a diagnosis is not clear. There are a couple of different ways EEG is used in the clinical realm. At one point in history, EEG was used to determine whether patients in hospitals were clinically “brain-dead,” but its clinical applications have expanded to diagnosing patients with neurological conditions. But again, I still have not addressed why I am awake so late. 

There is one method of using EEG in a diagnostic procedure which is referred to as “sleep-deprived EEG.” And it is exactly what it sounds like: I need to be sleep deprived before the procedure. In theory, I can get up to four hours of sleep the night before. I am electing to not sleep at all because I am afraid I will sleep through the procedure, or I will end up sleeping longer than four hours and potentially compromise the results. But this raises an interesting, you could say, conundrum for me.

I already struggle with insomnia and an inability to fall asleep, and an inability to stay asleep. That problem clearly gets in the way of every aspect of my life. Everyone needs sleep, that’s why we all do it, and you know as well as I do the detrimental effects of either getting too much sleep or not getting enough sleep. So, when I found out that I needed to be sleep deprived for this procedure, I wasn’t really looking forward to it, to say the least. But my drive to figure out what is going on with me supersedes my desire for a good night’s sleep. Also, just to be brutally honest, there’s a solid chance I probably wouldn’t have slept very long tonight anyway, so how much am I really missing out on? Now, if insomnia was my only other medical-related issue, other than the movements, this situation would be a little more manageable. But I do not have that luxury of insomnia being my only issue.

If you have ever read an article of mine, you will know that I have three main mental illness diagnoses: bipolar disorder 2, attention-deficit/hyperactivity disorder (ADHD) and an unspecified anxiety disorder. For all three of those things, one factor of my daily life that is very foundational to treatment effectiveness is my sleep, especially for bipolar disorder. People without mood disorders can attest to sleep problems leading to irritability, feelings of depression, and general mood instability. But, for those of us with mood disorders, difficulties with sleep have an exponentially larger negative impact on mood stability. So how do I balance these things? 

This is a very isolated incident. I am likely not going to need another EEG, and there aren’t really any other medical procedures that require sleep deprivation, at least none that are relevant to my situation. However, this just raises a larger, more philosophical question for me about my lifestyle and my priorities. What is it that I value more: finding solutions and answers to my movement disorders, or maintaining my mental stability and improving the effectiveness of the treatments I am already on? In the perfect world, I shouldn’t need to balance the two, because there would be a way to treat one without affecting the other. As I’m sure you are all aware, we do not live in a perfect world. And this is not an ideal situation for me, to put it bluntly. But it does get me thinking, and it is something I think that the larger community of people with mental illnesses and physical illnesses need to consider, especially those of us who deal with both at the same time. 

The question we need to keep on our minds is this: what is it that we value most? Which of our health challenges takes priority over the others? Is it even fair to prioritize multiple health conditions over each other? Does it get to the point where juggling these things eventually becomes self-destructive, rather than productive? I don’t have the answers to these questions necessarily, mainly because the answers are different for each person. Everyone has their own unique set of challenges, medical or not, and requires a unique set of solutions to those problems. Despite popular media perceptions of disability and mental illness, there is no magic pill or single treatment that works for everyone all the time. And because of that, each individual person needs to determine what requires the most attention, or the attention the fastest, depending on the number of factors you have to deal with. And because I am a science major, I deal with a lot of math, so I like to think about this in a somewhat mathematical way. And I promise I will not propose a math analogy that requires a math degree to understand.

If someone were to show you an equation like 2 + 2, you could probably give an answer to that relatively quickly. If someone were to show you an equation like 2 + 2 x 4, it may take slightly longer to come up with that answer. You may see where I’m going with this now. The more numbers, the more functions, the more variables you add to a math problem, the more complicated the process for answering the question will be, and it will take more time. Now, to relate this back to the purpose of this article, the more health conditions, or the more challenges someone faces in life, those serve as additional elements that make the equation difficult to answer. Having to juggle multiple problems creates an issue of, “Which problem comes first?”

Again, I don’t have the answer for you. Frankly, I don’t have an answer for myself either. All I know is this: By taking a chance on finding an answer to a very complex problem that I have, I am also risking exacerbating another serious problem I have. Will taking that chance ultimately be worth it? Well, that will come with time to determine. For right now, I am going to be awake for the rest of the night of the writing of this article because I am hoping that tomorrow, I could get some more answers to an issue that is starting to greatly inhibit my life. But it is something that I would propose to all of you. Consider what you value most, which issues or problems or challenges in your life you think require more attention right now, and also weigh the costs and benefits of dealing with each one. Life is not an isolated journey. No one has the luxury of only ever dealing with only one problem at any particular given point in their life. We all need to learn how to juggle a bit. Just remember, you aren’t expected to have everything figured out about all of your challenges. Be kind to yourself, do the best you can, listen to those around you who know what they’re talking about, and at the end of the day, do what you think is right.