So…I think I’ve lost count on exactly how long it’s been since this inner ear virus took over my life. It’s been almost 4 months….but I’m not exactly sure how many weeks that is. I’m giving up on counting.
Here is where I’m at right now. I had an MRI done to rule out anything more serious, and the MRI came back totally normal (which is what the ear, nose, and throat specialist expected). I had my eyes checked, and it turns out that I’ve become mildly nearsighted in the last couple of months–probably from having a baby. So, I have glasses now which help things tremendously when I’m out in the world. Chiropractic neurology has also helped the ear-related vision issues (kind of a perfect storm, isn’t it?). Both ears still ring, but in general, the ringing has gotten quieter. I’ve had 2 back to back hearing tests, and have had no improvement in my hearing in the last 6 weeks or so (but, I guess the good news is that things are stable)? I’m not quite ready to spend a day in a busy, crowded environment, but slowly I’m “testing my limits” at these places to see if my brain is ready for it. Ever so slowly, I seem to be building up a tolerance. I’m almost 65-70% of my normal self. There are good days and bad days, but I am really doing my best to weather the storm.
The most frustrating issue is, that my brain has pretty much forgotten how to sleep with all of this going on. I’ve been running on an average of 3 – 5 hours per night, for the past 5 months. I do understand that new parents aren’t supposed to sleep, but my sweet baby girl has been sleeping through the night since she was 6 weeks old! At first I thought it was the tinnitus–that the ringing in my ear was causing the insomnia. But as my family doctor explained “tinnitus might make it more difficult to fall asleep, but it should not make it more difficult to stay asleep.” When I do fall asleep, it’s usually for a stretch of about 2 – 3 hours, and then the rest of the night seems to be a pathetic series of 20 minute naps.
I am not a doctor, but I’ve got some opinions as to why the insomnia is happening. As I understand it, when there is a pathological signal coming from the ear regarding head position or spatial orientation, and that signal conflicts with the other proprioceptive cues (i.e.: the visual cues), the body goes into “fight or flight” mode. It’s essentially a physiological anxiety that the body responds with, in order to keep you from falling over. So, I believe my brain is doing everything it can to keep me standing straight or walking, and as a result, my adrenals are probably shot. And my brain is working overtime to try to compensate for this–even during the time when I’m supposed to be sleeping. Or at least that’s what I’m telling myself.
I’ve tried magnesium, hot baths, vitamin D, meditation, reading, positive thinking, melatonin, valerian root, anti-anxiety meds (which I quickly got off because they didn’t help sleep that much and I’m nursing)…but at this point, I’m kind of out of options. Some nights I get a decent amount of sleep. Most nights I don’t. Hypnosis, maybe?? I am meeting with a sleep expert this week…perhaps they will have some answers. I’ve had short-term insomnia before (work-related stress, life stress, etc), but it was usually due to the mind racing at night, or the kind of stress that you usually can control. And I’ve always found a way past it. This is a totally different type of sleeplessness. It’s as if my brain literally just forgot how to sleep.
I’ve also noticed–during the times when I actually do get some sleep–I am totally jaw-clenching. To the point that I’m in pain and I’ve had to ice my jaw and take anti-inflammatory meds! Went to the dentist for this, who fitted me for a mouth guard. I’ve always been a bit of a jaw-clencher (a lot of the adult population does this during times of stress), but never to the point of pain. I told the dentist I was trying to not do this, and he said “it’s totally involuntary in your sleep Jen, there’s nothing you can do to control it.” Wonderful. When your anxiety goes through the roof, there are a host of mystery things that happen to the body.
I’ve quickly learned, inner ear issues seem to be a medical mystery. I am exhausted from the task of seeking answers–nobody seems to have the magic answer of if, or when, I will make a full recovery. I’m not giving up, but it seems that I’m trying to fit a square peg into a round hole here by going out into the world and trying to get doctors to help explain things to me. So as my sister says (and with her wonderful book and meditation recommendations), I agree that sooner or later, I just need to surrender to what is happening to me here, and find a way to weather the storm. The only remaining answer I’m seeking right now, is how to sleep again. Because I truly believe that if I could get some good sleep back into my life, that I could learn to cope with this better.
I do believe that everything happens for a reason. I’m not sure what the reason is for all of this, but I think I’m getting a clear picture of what the lesson is. I need to: 1. Learn to deal better with ambiguity. I’ve NEVER been good at this. There should always be answers, and a way to shift a grey area into black or white, right? Wrong. Clearly, the universe is trying to teach me that I need to accept not having answers right now. OK, universe. I get it. I surrender. I need to also: 2. Not be such a control freak. Ever since I was a kid, I’ve felt that hard work, and going out in the world trying to “make progress” is the best way to get things done. As an athlete, when I was injured or sick, even if the rehabilitation path was long and difficult, I always felt like I could get through it. This is different. This is way more frustrating. And honestly, I’ve tried that here. 1,000 times over. I really think that this recovery will be 80% waiting it out and trusting my body, and maybe 20% work. OK, universe. I get it. I surrender. To be clear, I’m not “giving up.” I’m just going to shake hands with this illness, and not let it control me, but I’m going to stop trying to control it too. We will have to work together to get past this.
One thing I’ve learned from all of this, and in light of last month’s “Let’s Talk” campaign on Mental Health in Canada, is that I will always, TRULY, have more empathy for others. This illness comes with a host of anxiety, depression, crying spells, cognitive issues, and “not feeling like myself” on many days. So for everyone out there with a mental illness: depression, bipolar disorder, PTSD, anxiety, etc–I now I understand what it’s like to have an illness that nobody understands, and that nobody can fully appreciate until they’ve walked in your shoes. So many people look healthy on the outside, but they are not. And as a society, we need to find a way to deal better with that. I am so thankful that medicine is starting to finally see that health is about the mind, the spirit and the body. We have a long way to go, but we’re starting to make progress. Emotional distress can manifest itself in physical ways. Physical challenges with the body can wreak havoc on the mind and the emotions. The brain is a very powerful instrument of the human body….yet until something goes wrong with it, we don’t seem to fully appreciate it.
I’ve done some great reading on the topic, but since I’m running on about 3 hours sleep as per usual, I will have to do some book reviews on a separate blog. Will keep progress posted on this blog….and if you’ve made it this far, thanks for reading!