Insomnia and Anxiety: How I Sleep (Literally) Through Uncertainty
First, before I get started on the actual topic of this post, I wanted to make a quick statement regarding the current COVID-19 pandemic. I know these are very uncertain times, and it seems like every day brings about more unknowns. As I've said in previous posts, I believe that one of the greatest sources of fear for people living with a chronic illness like multiple sclerosis (MS) is the vast ocean of unknowns that come with the illness.
I've started having nightmares
So obviously, in a time like this, many people living with MS are probably experiencing more anxiety, fear, and stress than usual. I know I am. It's all so overwhelming. That's why I haven't written very much in a while. I don't have many good answers regarding the coronavirus and MS, and it's pretty much the only thing on my mind as of late. But I've been hesitant to talk about it too much for fear that I might only perpetuate anxiety, fear, and misinformation in the MS community.
So today, I want to dive into something that I've touched on before but from a slightly different angle. I'm a little embarrassed to admit this, but at the start of this crisis, I began having nightmares unlike any I've had in years. And that is what motivated me to revisit this topic.
Multiple sclerosis and insomnia
I'm sure that anyone who has MS and is currently reading this knows all too well about the difficulties that can surround something as simple as sleep. I'm also sure that they have already read a thousand and one articles about MS and insomnia. So again, I'm going to try to attack this from a different perspective as not to bore anyone. A perspective that, hopefully, will paint a much more colorfully vivid image of my experiences than I usually do.
Tired, fatigued, but unable to sleep
As is so often the case with MS, sleeping is yet another thing that we've done all our lives without even thinking about but can now feel nearly impossible. Despite being dead-tired and terribly fatigued, sleep can always seem to be just beyond your grasp. Well, without the aid of some kind of medication, that is... Actually, even with pharmacological assistance, there are times where prescription sleep aids appear to be utterly powerless against insomnia. In my opinion, this is the greatest oxymoron of MS. Tired, fatigued, but unable to sleep.
My brain is an office building
When I imagine what's going on in my brain while I'm lying in bed unable to sleep, I picture my brain as an office building. This building is full of departments that control every aspect of my body. From being able to move a limb, to being able to interpret physical sensations, to being able to speak, and so on. Come bedtime, all the workers in this neurological office clock out for the day and turn the lights off in their departments. As the building goes dark, my body grows heavy and starts to shut down.
Aside from the random electrical surges that MS sends out into my central nervous system (CNS), which causes my muscles to violently twitch, everything feels dead. But as my mind starts to cross over from a state of wakefulness to a state of sleep, I find myself stuck somewhere in the middle. A cognitive purgatory that I can only liken to my past experiences with sleep paralysis. My brain and my body aren't on the same page regarding whether I'm awake or asleep.
One remaining light left on
Well, come to find out, up there in "the office," there is still one single employee that's suffering from an uncontrollable case of OCD. Not that it really matters, but this employee's name is Gary. My body may have shut down for the night, but my brain is stuck in "on" mode because Gary has a lonely light on and is still rummaging through random file cabinets that contain old memories I didn't realize I still had and frivolous thoughts that serve no real purpose.
If Gary would just go home and turn off the one remaining light in the office behind him, I could sleep. But no. I'm still wondering if we live in a multiverse full of infinite realities that includes one where the dark side of the moon is hiding a secret civilization of space cats who spend their time memorizing Shakespeare and studying string theory. Seriously Gary? It's 3:15 in the morning! Go home, and just let me sleep! I'm not paying you overtime for this crap!
With insomnia, there are good days and bad days
Is there a rhyme or reason for insomnia? Nope. Well, yes. I mean... sometimes. Like any other MS symptom, there are good days and bad days. Sometimes there doesn't seem to be any explanation for what may have caused a random flare of symptoms such as insomnia. However, sometimes these bad days follow periods of excessive stress, exposure to too much heat, eating poorly, or anxiety (to name only a few examples of the many triggers of MS activity).
Lately, for obvious reasons, I've definitely reached a new peak of stress and anxiety. I've also been eating poorly. I'm currently relocated (temporarily), so all my daily routines have been totally disrupted if not halted. While I've not had too many issues with sleep for the last few months, I am once again dealing with Gary not wanting to go home for the night. I really wish I could fire that guy. What does he even do? Ugh. Anyway.
I decided to try a weighted blanket
In addition to the sleep aids my neurologist refilled, I actually decided to try something new that I've always heard good things about but never took seriously enough to actually try. I decided to buy one of those weighted blankets. It weighs 20 pounds and cost me somewhere around $60.00! A high price for something I was skeptical about, but desperate times call for desperate measures, right? I was running out of things to try so I just spent the money. And wow, I love this thing! I was worried that I would have nightmares of being smothered or crushed but no, nothing of the sort. I don't want to say it feels like a big ol' hug, but... it kind of does feel like a big ol' hug.
Between the evenly distributed weight of my blanket and the white noise I listen to with my noise-canceling headphones while I sleep, I almost feel separated from the physical reality of my surroundings. To me, the weight of this blanket almost gives me a feeling of "neutral buoyancy" on my bed. I know that doesn't really make any sense, but I'm not sure how else to put it.
Shutting down each muscle for the night
Now, one of the techniques I've practiced for some time now is trying to flex each muscle in my body, from my toes to my shoulders, and then relax them. At this point, I try to tell myself that each of these muscles has shut down for the night. That I have literally stopped all nerve signals from being able to make it from my brain to my body. I find this tactic much easier now under the comforting weight of this blanket.
Focusing on the white, static noise
Next, I focus on the white noise. I imagine that my body is out of the picture. It's just me, as in, the part of my brain that's conscious. I'm floating in a dark void where my body doesn't exist. It's just me, my being, immersed in an infinite universe of calmly flowing sound. I try to clear my mind of any thoughts that may spark life to an inner monologue. Nothing exists other than this sound. Of course, even when I'm not living in the middle of a highly stressful period of time, this isn't very easy. So, when my mind inevitably starts to drift off track and think about anything other than the white noise, I simply try to refocus myself on the static. Only the static. Note that I said, "simply" because simple does not at all mean easy.
Mindfulness is simple, but it's not something I find to be easy. Not at all. However, after dealing with frequent bouts of insomnia for the last ten years or so, I've found that practicing mindfulness each night has definitely helped me manage my inability to fall asleep. In case you're wondering, mindfulness is defined as "a mental state achieved by focusing one's awareness on the present moment..." and is something I actually learned about in the MS community.
What's your experience with insomnia?
I suppose it's pretty much the same thing as meditation? I could be wrong, but either way, that's how I fall asleep each night. I'm not sure if I sound crazy or like I'm just describing a bunch of psychedelic hocus pocus, but maybe I've shown at least one person reading this the door to a little less stress and a little more sleep?
So, what do you think? Would you be willing to try any of this to help you catch some zzz's? Or do you already do any of this? What's your experience? Let me know in the comments below!
How many specialists did you see before finding "The One"?