Though you will often hear about how awful fatigue is with Multiple Sclerosis, you will also hear about how difficult is can be for us to find good sleep. While I’ve covered some reasons like spasticity and pain before (cornerstones of what I call Painsomnia), I wanted to talk about another issue that plagues many of us. I’m referring to the mental anguish about our disease that many of us deal with on a near nightly basis. My wife and I use a phrase that is popular with a particular group in the TV show Game of Thrones to describe this: “The night is dark and full of terrors”. Most nights when she asks what’s wrong, I’ll just mutter that phrase and she’ll know, no matter how I am feeling physically, my mind simply can’t stop thinking about my life with Multiple Sclerosis.
Lying awake, trying to sleep
Lying awake while thinking about your life or going over your day is a pretty common problem for many people, regardless of whether they have a disease or not. Anyone battling any form of insomnia will likely run into this issue, so it’s not something specific to MS. However, those battling this disease, or any chronic condition, have some specific and common thoughts that can keep us up at night. I must also stress that it’s not simply that these thoughts are keeping us up, they’re upsetting us. Stressing us. Depressing us. Saying “The night is dark and full of terrors” is a pretty accurate description, because these thoughts are absolutely terrifying for me. These thoughts usually revolve around my life with the disease or what’s happened to my life because of the disease.
Often times, I lie awake thinking about my day, but my day is not like most people’s. I didn’t go to work because my disease has forced me on disability. I’ll start to wonder where my day went and what I did that day. Sometimes, by the time I’m in bed, I really don’t even know or remember what I did all day. I’ll think about how I started the day with grand aspirations (which to me, might be as simple as taking a shower) and then I will realize that I accomplished nothing (what with the showering thing, sometimes you can tell that just by smell). Figuring out what I do and where my days go is a pretty common issue for me. Not only can I not answer others’ questions about it, it keeps me up because I can’t answer myself.
Thinking about what I used to be able to do
All of this becomes very depressing when I think about what my life and interests are now and compare them to what they used to be. As an example of that comparison, I’ll talk about my current hobbies. I collect action figures, build Mega Bloks and Legos (which were actually suggested by a neurologist to help combat my cognitive dysfunction and to also be rehab for my often numb hands), play video games, and hang out with my dog (and trust me, I could not live if not for those hobbies, no matter how they sound). Far different than the days when I had a career and went to work everyday. My hobbies then included playing hockey and softball and going out and socializing. I was very into sports and friends, so it was a big change when my body had had enough and I was put on disability. I physically can no longer do all the things I used to enjoy. As time goes on, I become less interested in the things that used to drive me and I become more isolated into this hermit that plays with toys (and there’s nothing wrong with that, I’ve met a lot of great adult collectors).
Knowing my current hobbies/daily activities is important, because when I say I lie awake upset about being unable to accomplish anything on a given day, those things I couldn’t accomplish were probably as simple as putting some action figures on a shelf, building a Lego set, or playing a video game. So that starts a whole other level of terrible thoughts about how those are the “big” things to me now and how I couldn’t even do them. Even as I write this now, I can’t help but think how crazy all that sounds. What happened to my life? Where did it go? It’s hard not to think back to the past after thinking about what my life is like now. I remember good times and everything I once did, then I come crashing back to reality, which leads to sadness and grief. I feel like I’m not even sure who I am anymore.
Thinking about the future
Worrying about the lack of a day’s accomplishments, how sad they may seem, and how things once were is not the end though. Thoughts about the future will inevitably creep in as well. The future is a pretty tough topic. MS is a very unpredictable disease. Every night, I go to bed knowing I may be completely unable to walk in the morning (that is literally what happened when I had my first exacerbation), or unable to see, or talk, or use my hands. That kind of thing is super scary, it’s more than that, it’s absolutely terrifying, and those thoughts will drive you crazy if you give in to them. I fight hard not to think about the future, particularly because I’ve seen one future, that of my grandfather who had MS. He had no disease modifying medications (DMDs) and ended up completely disabled, unable to walk, talk, feed himself, or use the bathroom, basically anything. It’s hard not to think about how I could wind up like that as well. Thankfully, I have access to medication that he didn’t (and this is why I am crushed when people say they are going without a DMD, to each their own, but having seen what life is like without one, it baffles me). Even still, DMDs slow progression, they aren’t a cure. So no matter what, the future is a rough thing to think about.
Past, present, and future can all be really tough to think about at night. I guess an easier way of saying it, is that life in general can be scary to think about. So yes, for me and many others, when it is time to close our eyes and be alone with our thoughts, “the night is dark and full of terrors”. We have a lot more contributing to our lack of sleep than the physical symptoms that we endure. Trying to stay on top of our mental health is extremely important. For me, having those hobbies, as odd as they may seem to some, are a lifesaver. It’s important to find something to occupy yourself with. On those rough nights, I try to focus on those hobbies to help myself get to sleep. I don’t have a huge solution other than that. I did want to talk about all this though and acknowledge that we have a lot more than physical issues keeping us up at night. As always, feel free to hit up the comments if you want to discuss, I’m sure I’m not the only one whose night is dark and full terrors, so let’s try to lighten our nights by discussing it and getting it off our chests!