The eternal paradox of being able to sleep at any moment… without ever truly relaxing. This is the reality of living with anxiety and narcolepsy.
As a person with narcolepsy, you have probably had people tell you that they are jealous of the fact you get to take naps all the time. Whether a joke or a straight up misinformed comment, this feeds into people’s ideas of naps as a luxury; a habit of those with extra time to spend devoted to relaxation. However, recently I have found more and more that I can’t relax like the average person.
It’s an obvious but important thing to note. When you are in danger of falling asleep any time you are relaxed, you start to run into a bit of a problem: how do I live in a constant state of being either directly stimulated or asleep?
When I say asleep, I don’t just mean what most people would consider “asleep”, but all of those states between waking and sleep that only narcoleptics get to experience on a regular basis.
For most people, relaxing after work means cuddling up on the couch while watching TV. However when you are a person who finds it difficult to stay awake while sitting in a comfortable seat in dimmed light, it’s hardly surprising that this might not be your ideal option.
Similarly, the offer of watching a movie on the weekend isn’t one that I often take people up on. It’s not that I never see movies, but it does take something special to convince me that it is worth the risk that I’ll waste my time by sleeping through the most important parts! I also want to spend my time with friends or family actually awake, without a screen constantly threatening to put me to sleep.
As you may know, people with narcolepsy don’t get enough restful sleep. This leaves our bodies and brains without enough of the crucial process of regeneration that other people receive each night. This also leaves our brains with an increased occurrence of mental health conditions such as depression and anxiety.
Anxiety might not be something you would typically associate with a sleepy person, certainly far off from the hyperactive, highly charged stereotype that some people have of the condition. Despite this, it’s actually very common throughout the narcoleptic community, and something I have issues with myself from time to time.
Being sleepy and anxious can be a terrible combination, leaving you feeling agitated and jittery without the energy to funnel that restlessness into a productive activity. It can also have the inverse effect of making your poor night time sleep even worse, and causing dream-related symptoms such as hallucinations and sleep paralysis to take on a more worrying tone.
Unfortunately narcoleptics also have a lot of things to worry about, with increased chance of obesity, unemployment, divorce and many other things that come together to make even the most sane person feel like their life actually is falling apart.
One big issue for those with both anxiety and narcolepsy is that the stimulant medications many PWN rely on can exacerbate anxiety symptoms, while common anxiety medications can cause further drowsiness. It can be tough, and take some compromise, to find an optimal balance. (Please talk to your doctor if you are worried about the side effects of your meds on your mental health! Keep in mind that anxiety is not just in the mind, it can have physical symptoms such as tightness in the chest, difficulty breathing and a racing heartbeat.)
Whether or not you experience clinical anxiety, truly relaxing without falling sleep can be difficult as a PWN. Without the ability to relax, it is easy to feel as if your whole life is spent either under stress (with work, kids or whatever else keeps you busy) or asleep. Not much of a life.
Despite all of the odds stacked against us, it’s not a lost cause. Through a lot of trial and error I have discovered some activities that will keep my brain awake enough while allowing it to zone out into that relaxed state of mind. I’ve realised that making time to do these things is essential to keeping my mental health on track!
I’ll be following this post up with another describing some of my ideas for relaxing (but not too relaxing!) activities, so stay tuned! I would also love to hear from anyone with suggestions of things that work for you 🙂
x Elle
This speaks to me so much. It is so rare for me to feel relaxed, that I can’t think of the last time it happened. I have two settings: drugged up and awake (usually stressed about something) or unconscious. It’s an exhausting cycle.
Thank you so much for sharing! This is my life exactly-especially lately. I am working with a therapist & trying to collaborate with my doctors about my meds. Looking forward to your next post!
Thank you so much for writing this, it helps to feel less alone. My anxiety has become a daily struggle and if effecting all areas of my life 🙁
Thank you for writing this. It’s all the things I feel but can’t find the words to explain. I’ll be sharing this with my family. Keep up the great work.
I can definitely relate to this. I know when my anxiety is starting to build up because I start having hallucinations and paralysis. I’m still working on strategies that will help to calm things down though, so I’m keen to hear your ideas.
This relates to me and getting the diagnosis was life changing as I could start to explain to people why I hated going to see movies, reading a book, taking a bath etc! However, my mental exhaustion has just reached a new level – the doctors have changed my anti drepressssnts over as after a year it was clear that these were contributing using towards my anxiety and depression. These are AD’s that my doctor put me on before I had my sleep tests done (he was convinced that my exhausted state of mind was all depression related), so I took them at night and they slightly sedated me! My narcoleptic specialist was not impressed! Any ways, I am on my new AD’s but I am suffering with Insomnia?! Yes that’s right – so I have gone from the anxiety of falling asleep at inappropriate times to not being able to sleep. But if I feel like napping during the day (something that if I had opportunity I would grasp) to becoming fearful of it I case I sleep even less at night. The exhaustion of reducing my narcoleptic meds during the day as I feel wired on them now, to cutting back on my coffee which is something I have always relied heavily on – so I’m getting migraines as a result. Anyone else ever experience anything like this? A narcoleptic with insomnia – that really does increase my anxiety! 😩😞💤💤
Hi Katie,
Difficulty staying asleep throughout the night is actually one of the typical symptoms of narcolepsy! (Check out the symptoms page of the guidebook or the advocacy tools page for more info on insomnia and narcolepsy). So unfortunately what you are experiencing is pretty common. I was similar in the progression of my narcolepsy: up until diagnosis at 17 I would never have trouble sleeping ever, I would just be asleep all day and all night. Then after I got on stimulants I started to wake up more and more during the night.
The thing that solved this problem for me was changing my diet, getting my mental health on track, exercising semi-regularly and making sure to only nap for 5-15 mins when I get super tired. All of these things combined have made it a lot easier to deal with and I now take less stimulants so I get less of those side effects…
As well as following basic sleep hygiene, something that might help you would be actually getting UP out of bed when you feel like you truly can’t fall back to sleep, doing an activity like tidying up or reading, and then after a certain amount of time (I do 20-40 mins sometimes!) go back to bed. It should be easier to get back to sleep then. It might seem weird, but I just think of it as a reverse nap!
In any case, it’s great to hear you are making progress with your doctor regarding finding the right meds for you. It is so important!
Best of luck!! x Elle
Insomnia is very common among ppl with Narcolepsy
I’m going through that now. It’s the most frustrating thing I’ve ever dealt with.
OMG I can totally relate. I’m actually in process of taking an early retirement at work b/c I don’t want to get bad enough for disability; but I cannot function now…. the meds, the schedules, and the migraines on top of Narcolepsy… jeeze…. can’t catch a break! Now the anxiety is setting in, short w/the family and kids, anxious about leaving work, all that good stuff……. thanks for making all the chaos sound somewhat normal, at least I’m “normal” for a PWN. 🙂
I love this post. Thank you for sharing! I was diagnosed with N 21 months ago. To help with the anxiety and depression that often comes with the territory, I started to blog about about. You can read my story here.https://thetruthfairytales.wordpress.com/. Your story helps me realize I’m not a freak and I’m not alone!
Thank you so much for putting my feelings into words! They say my narcolepsy is mild, and I’ve never been diagnosed with anxiety, but both have felt a whole lot worse lately. I found your site while trying to research if they give anti-anxiety medications to narcoleptics. I was surprised to find how common it is. Thank you so much!
This sounds just like what I go through. I’ve struggled with anxiety and depression my whole life. I have always felt tired, but I just accepted it, even in high school. I would fall asleep in class all the time. Then in my 20’s I just thought it was from having kids, and just life. Then around 3 years ago, I started to experience sleep paralysis more frequently, and started having the hallucinations. They were awful, and I didn’t know what was wrong with me. I had a sleep study done, and that’s when I found out I had Narcolepsy. In a way, it was a relief to hear it…at least I could put a name to my constant feeling of tiredness and my ability to fall asleep if I sat still for too long.
Gosh, I felt so alone before reading this. It’s just terrible! Anti depressant, anxiety med and taking over the counter stimulants and monster energy drink to stay awake at work. Problem is, one feeds the other! Stimulate fuels anxiety and anxiety med fuels sleepiness! Feel like a prisoner. No way out and no relaxation.
Thank you for your post
I’ve battled with narcolepsy and anxiety what feels like forever! I still can’t find a balance or any help, constantly feel like I hit a brick wall after every GP etc I’ve seen! I feel like I gave up hope and feel alone like no1 understands till I came across this! Still don’t know where to turn, as anyone found a medication that gives a balance between narcolepsy and anxiety?