The Night is Dark and Full of Terrors

The Night is Dark and Full of Terrors

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!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (44)
  • KDOS66
    1 year ago

    You helped me realize why my writing had shifted from happy stories and poems to writing about “the darkness” . Somehow writing about it has been my way of coping. Here is one from a few years ago.
    “The darkness is calling me. It waits silently for me to come . So I willing go to it and let it wash over me, comfortable in it’s grasp. It will take me to a place where neither dreams nor nightmares scare me. I am not afraid of the demons in the dark, the ones inside of me are the ones to be feared.” ~KDOS
    So when I read that you and your wife used the word “dark” it really hit me. Someone else thinks the same thing I do. Thank you.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much KDOS, I really appreciate you sharing that! I too find it easier to admit that some things are dark, rather than deny them.

  • Estelle
    2 years ago

    I have lived with MS for 32 years. I lost my husband years ago and live alone with my beloved dog. I understand fully “The Night is Dark and Full of Terrors.” I sleep very little with all the thoughts that go on, plus I have body pain that never stops. Each day it gets more unbearable.

  • Devin Garlit moderator author
    2 years ago

    I am so sorry to hear that Estelle. I hope, at least, that your dog is helpful. Many times my pup, who is an older guy and moves as slow as me, has been my best companion on those tough nights.

  • opirnia
    2 years ago

    I’ve done this. Thanks for sharing and putting into words what I cannot.

  • Gary
    2 years ago

    I know I’ve has MS for at least 40 years and after many years of tests and wrong diagnosis was officially determined 15 years ago. I even had a doctor tell me it was a
    psychosomatic disorder and recommended therapy.
    I feel as though you dug into the dark caverns of my mind and extracted all the thoughts I have been unable to verbalize for years. I’ve laid awake so many nights with apprehension of what the next day holds and what I’ve accomplished that results in more worry and tension.
    Thank you for bring this to light for so many of us that have the same issues.

  • Devin Garlit moderator author
    2 years ago

    Thank you Gary! I think a lot of us go through this, I think it’d be strange if we didn’t with the lives we lead!

  • Dar210
    2 years ago

    I had problems sleeping for years. Just started taking melatonin, and it works for me with no side effects. Has anyone else tried melatonin?

  • Devin Garlit moderator author
    2 years ago

    Hi Dar210, I have had some success with melatonin. On days when I have a long time to sleep, I’ll often take it.

  • Estelle
    2 years ago

    Yes I have a bottle on my shelf of Melatonin. My doctor said to try it. I did but it doesn’t help me.

  • DonnaFA moderator
    2 years ago

    Hi Estelle,

    I have long suffered insomnia, I had a similar experience with melatonin. I had a store brand that was 10 mg and was not at all effective for me. I tried another brand, a dissolvable tab that was 1/3 the strength of the original and puts me out within 30 minutes. Hopefully, if you try another brand you can find one that works better for you. You might be interested in reading this NIH study on melatonin efficacy. Thanks for being part of the community. We’re glad you’re here. -Warmly, Donna (MultipleSclerosis.net team)

  • SBadge697
    2 years ago

    Holy shitballs, I thought I was the only one losing my mind!!!

    My days consist of my iPad, making crazy knots or something with paracord and drawing. However, I can only focus on one thing for 30 minutes before I sit and wonder what else is there. And, then, its on to something else.

    Sleep? I have to take my ambien and other sedatives to sleep. It is unconsciousness or wide awake. Also, regardless what anyone says, I smoke a bowl when I wake up and before bed, that has helped.

  • Heidi K DeLaughter
    2 years ago

    I feel that through your post that finally. Finally, someone understands.

    You are a male version of me.
    Thank you for sharing your experience.

    Love, light and healing.

    Heidi

  • chalknpens
    2 years ago

    Wonderful description of what everyone with any chronic illness faces quietly. Thanks for posting this well written post. Wish I had the courage to share it. I continue to deny the diagnosis of RRMS, as I have no mobility issues … all symptoms are cognitive and memory related. I really do ‘look good’ and walk well and manage to run my quilt shop business alone now … I grieve the Christmas Day loss of my husband every night, which adds to the sleepless hours. I finally fall asleep just before dawn and sometimes don’t get up until just before noon when the shop opens. I’m not sure how long I’ll continue all the things my husband and I did together during our ‘happily ever after’ years. We had 46 beautiful years together, and I guess I ought to be satisfied … but I’m not … just as I’m not in “acceptance” of the now ten year old diagnosis. I just want him back … I want our happy life together back. And I want this ms label off my folder. I still think it is ‘Parkinson’s to be’ as that is what both my parents had…

  • Darlene
    2 years ago

    Dear chalknpens, I am so sorry for you for the loss of your husband. Like you, my husband and I have been married for 46 yrs., everyday the thought of life without him crosses my mind. I just can’t imagine the sorrow. I was diagnosed with relapsing ms in 2015, like you, no one would know I have it, but I sure do, and so does my husband. Mine are mainly cognitive and memory with heat intolerance and some spasticity and leg issues, but I am fine compared to others. 43 yrs. ago I placed my trust in the Lord Jesus as my Saviour, from that instant on he has turned my life in a new direction with hope and help in times of need, I thank him for it. My life would have gone down a disastrous road if not for my God and my Savior. I hope and pray that your grief softens a little more each day and that you will be able to focus on what you two had together, instead of focusing on what you do not have now. I am thankful that my husband and I were blessed to have each other for all of these years, some never have that love at all, or lose it much, much sooner. Still when you have loved and lived with someone that long, life just doesn’t seem possible without them. ♥

  • 2 years ago

    Your story is dead-on. You have put into words what I could not. I had my boyfriend read your story. When he was finished he came and found me, hugged me and said ” I had no idea”- Thank you for sharing !!

  • Devin Garlit moderator author
    2 years ago

    Thank you so much Lonefeather! I’m so glad you boyfriend read it!

  • PatH
    2 years ago

    Oh, I just purchased a sensory device called a “Daren Waves” Light It was developed for people with autism. It’s amazing! It floods your room with oceanlike waves that move. It relaxes you. It has a port where you can play music through it. I’m a singer. I can’t work like I used to. I took up gardening and found that I’m really good at it. But, summer is coming. It’s already reaching near 80 in Florida! My husband is going to set up solar flood lights so I can garden at night. Which will be great for those sleepless nights.

  • Devin Garlit moderator author
    2 years ago

    Thank you PatH! Night gardening is a fantastic idea! I love to hear that. As I like to say, MS is all about adapting and finding new ways of doing things!

  • chalknpens
    2 years ago

    Night gardening is a great ‘modification’ that he is making for you! Bravo!
    I think the oceanlike lights would make me seasick, as vertigo is an issue for me.

  • PatH
    2 years ago

    You are DEAD ON!!

  • msaimeej
    2 years ago

    Thanks for sharing. That was quite powerful. I hate the nights. Legos uhh not a bad idea.

  • Devin Garlit moderator author
    2 years ago

    Thank you msaimeej!

  • tfs
    2 years ago

    I knew I was keeping the multiple containers of Lego for a reason! I bought them for my kids over 25 years and couldn’t part with it. I am no engineer, but perhaps I can develop some new skills and pathways. Plus, it could be good therapy for my hands.
    Devin – always enjoy your thoughts.
    I don’t know if we will go down the same path as our relatives before us – but somehow I think these types of resources were not open to them. They certainly did not have this online support, educational tools, and community.
    The night (and sometimes the day) is dark and full of terrors. Wonderful quote and acknowledegment.

  • Devin Garlit moderator author
    2 years ago

    Thank you tfs! I know it may seem juvenile, but the working with Legos really does help me. I honestly work with them a bit before trying to write anything and pretty much can’t write without first warming up that way.

    As you say, our relatives didn’t have the paths that we have available with regards to MS treatment and support. All the more reason that I hope other make use of what is now available!

  • freedom
    2 years ago

    Thanks for your writing. I can relate to the dark and scary thoughts. I also go over my list of regrets. Should’ve traveled more or did more exciting fun challenging adventures. It seems my mantra to all those who are well around me is do not put off today because literally the next day your life can be changed forever. I do miss the old me. And yes, sometimes a shower is it for the day.

  • Devin Garlit moderator author
    2 years ago

    Thank you freedom! It is at the very least comforting to know we are not alone! Very much appreciate you reading and sharing your thoughts!

  • potter
    2 years ago

    I go through spells where I wake up four or five times during the night and have a hard time getting to sleep. I am not worrying about my MS, I am just awake and I know if I don’t get enough sleep tomorrow will be a do nothing day. So I lay there trying to think about something that is really boring so I will eventually dose off. Like you I had two aunts that had MS before there was any treatment, one aunt was really bad and in assisted living by the time she was 30. I wish MSer’s not on a DMT could understand the hell she went through until she died at age 50 because of brain shrinkage. When I was diagnosed I asked how soon can I start taking a DMT. Potter

  • Devin Garlit moderator author
    2 years ago

    Thank you Potter! The way some folks rage against medication (and science in general) is always shocking to me. As you have said, if they could see what we’ve seen, they might change their minds. Thanks so much for reading and commenting!

  • Scugnizzo
    2 years ago

    Hi Devin,

    I always appreciate you essays about living with M.S. You and I are close in age and time of diagnosis. There are many women who contribute to this site, but sometimes it’s comforting to read the words of another man, who has struggles similar to my own. Thank you for your accurate description about not only the physical, but mental challenges of living with this interminable monster of M.S. Keep on, keepin’ on.

    John Briggs
    Seattle, WA

  • Devin Garlit moderator author
    2 years ago

    Thank you John! Like you, I am always happy to hear and see something from another man. There are certain challenges that we encounter being a man with MS that I think not everyone can really understand. Thanks so much for reading and for sharing your thoughts, it’s very much appreciated!

  • Dimitri
    2 years ago

    Yeah, it’s so fustrating and demeaning when you look back at your life and to remember how you used to be compared to what you’ve become.

    This issue came up in my therapy this week. My therapist asked me how I am accepting my new reality of being on permanent disability and my new life.

    I freaked on my therapist. I told her that this life is not my new reality and that I do not accept it. She says this is were my problem lays and that it would be best to accept my new reality.

    I say bullshit. I still have faith that science will be liberating us all soon. I think we’re on a verge of a big breakthrough with regenerative medicine. Once they learn how to use stem cells in a safe and optimal way we’ll all be able to fix our brains and spinal cords back to normal (if not better).

  • freedom
    2 years ago

    I wish for restoration also. If I could work agin…look out world!

  • Devin Garlit moderator author
    2 years ago

    Thank you Dimitri! This is most definitely a time of great hope! I always try to tell the newly diagnoses that very thing. Treatment choices and knowledge have already grown leaps and bounds in the time since I was diagnosed and that progress will only continue!

  • lhalvor
    2 years ago

    Thanks for sharing. I have no answers. And I’ve had MS 40+ years. I enjoy making jewelry and because the bead boards have grooves can do it adequately despite lack of tactile sensation. I have a checklist on my iPad using a program called balanced. Even though the activities seem mundane, often I prove to myself I did stuff. I think being a success oriented society, it’s easy to,feel at the bottom of the heap. A reminder to,myself of what I do each day has helped me.

  • CatDancer
    10 months ago

    I think that’s a great idea. To write down everything we did hat day. Clever.

  • Devin Garlit moderator author
    2 years ago

    Thank you lhalvor! I will check out that app. It’s so important to find and feel some sense of accomplishment, no matter what it is. I’m sure having a checklist is really beneficial. I know I’d sleep a little better knowing I managed to do something that day and being able to see it right before bed!

  • Joelle Buck
    2 years ago

    I too have this to deal with. Trying to find so.e quality sleep. I know that it is vital for our bodies to get get adequate amounts of sleep in order to function and stay as healthy as possible. I have just tried my second DMT, and unfortunately my body rejected it and caused me To go onto renal failure.I seer my Neuro next week as my MRI shows more lesions . I hope to find a way to slow the rapid progression and disabling effect of this disease. I also know in order for that to take place that I find a way to conquer my “NIGHT OF DARK ESS AND TERRORS”. Thanks for sharing.

  • Devin Garlit moderator author
    2 years ago

    Thank you Joelle! I hope you and your neuro are able to find a new medication. It can be quite common to have to try new ones (I’m on my third myself). Luckily more and more come out all the time!

  • Micah
    2 years ago

    I have to say your thinking is pretty close to my own on subjects.

    Depending on what is keeping me up, usually it’s burning and tingling in my arms. A salve I got in Colorado works wonders for it.

  • Devin Garlit moderator author
    2 years ago

    Thank you mjt311! That salve sounds wonderful!

  • mascha
    2 years ago

    Thanks for this article.
    Yes unfortunately i go through this phase too. Some more then others. I get the spasticity issue or numb foot that lesves me awake or the thinking part as you explained. I often wonder why? Recently had my check up and my progress is mild RRMS and yet i also have these visions.
    I am on no DMD as my neurologist thinks my stability will be the same with or without them. I hope he is right. He has 23 yrs experience in MS so lets hope

  • Devin Garlit moderator author
    2 years ago

    Thanks for reading and commenting mascha! It can never hurt to get a second opinion, no matter how much experience a doctor mat have. If anything, it can help provide some peace of mind!

  • CatDancer
    10 months ago

    On yes, I know too well about these nights full of terrors. Nighttime can be maddening for me. Oftentimes it’s because everything from the day hits me and i fall apart from sheer exhaustion, which causes all these thoughts to come around. I’ll have horrible brain fog and mood swings, therefore I can’t concentrate on anything nor can I fall asleep, and depression hits, it’s so strange, yet it makes 100% sense. My mom says i have sundowners and I keep reminding her i have MS. I’m not glad that you experience this but i am glad you wrote about it. It makes me feel a little less alone with this part. And, a little less guilty if I end up waking up late to get enough sleep.. As far as people asking what I do… that’s a tough one. But it made me realize how we learn to define ourselves by our occupations, which really has nothing to do with our true authentic selves. Strange that developing a disease like this taught me that. We just our butts everyday to keep moving. Keep on, my friend.

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