Working On Us – sleep disorders.

It’s week #13 of Beckie’s mental health prompts series Working On Us at

Beckie’s Mental Mess.

The topic for this week is sleep, insomnia and other sleep disorders. Here are the questions for prompt #1.

 

1. Have you, or do you suffer from sleep disorders? – I have a lot of sleep issues, which are both related to my mental health difficulties as well as the fact that I don’t see the light so my sleep cycle is just messed up. They change with time. Just as I sleep at different times and my sleep schedule and habits change, so do my sleep related problems. Most of the time I struggle with insomnia more or less. It is my normal to lay in bed for an hour or longer before I fall asleep. Sometimes I wake super early, like 3-5 AM and after going to sleep at about midnight. Luckily it’s not as often as it used to be for me that I have, as I call them “Zombie days” – a day after a night of no sleep at all. – Sometimes my insomnia is clearly due to anxiety or stress and I just overthink everything and worry about every single thing and ruminate, it’s gotten worse recently, but sometimes it’s like my inner clock just isn’t set on sleeping whatsoever and I may even feel a bit hyperactive, playing with Misha at 2 AM and not feeling even slightly tired, and then sleep until noon or so. Then I have times when I sleep a lot, 12-13 hours and usually miss a great chunk of the day as a result. Sometimes it just comes on its own, and then I hate it, because I don’t want to sleep my life through like that, and feel lazy and lousy, plus then it’s usually not the best kind of sleep, filled with bad dreams and such. But sometimes I do that on purpose because I’m so depressed and sleep is way more interesting than the reality. I suppose I might have non 24 hour sleep-wake disorder (what a grossly long name) which is very common among the blind, but I haven’t ever heard about it being diagnosed in Poland so I guess people don’t know much, and while I know there is medication for that in other countries, I couldn’t find the evidence that it is used over here, so I don’t see the point in seeking a diagnosis. I have very vivid dreams, which can be an incredible gift and a really great thing, I love my good vivid dreams, but it can just as well be something close to a curse, because my nasty vivid dreams are super creepy, as if I had a personalised horror movie production studio in my brain, with horrors right just for me. 😀 I’ve read that there was some Danish study which revealed that apparently blind people have nightmares more often than sighted people do, which would make sense from what I’ve heard from many blind people. If you have vivid dreams things get just a bit more intense. And on top of that I am one of the lucky ones who regularly struggle with sleep paralysis. And that’s probably the biggest sleep related problem for me. There is also my silence anxiety and sounds anxiety involved, which makes sleep often difficult. I won’t get into detailed descriptions of what it is for me but, very shortly, I just don’t do complete silence, so I need to have some quiet music in the background, and Misha, and it always works, but to a very varying degree.
2. Have you sought treatment for your sleep disorders? – I had a point in my life where I thought I was unable to take this sleep paralysis thing any longer, I was so fed up and constantly scared and I just lost my patience with it. It’s something that I’ve lived my whole life with but suddenly I had that “why me?” crisis. And then I went to the neurologist looking for some help, also because I wasn’t perfectly sure it was sleep paralysis, because some things in it are different for me than they are for most people whose stories I read. She confirmed that and gave me some tips on things that I could do myself to alleviate it, and told me that there’s no medication that would be 100% working for it, but that she could put me on some antidepressant that is said to help with that, though it’s not certain how effective it is and it’s mostly prescribed for people with narcolepsy who additionally suffer from sleep paralysis. Since it’s not clear if it actually works, I said I’d rather try dealing with it without medication first. I was also offered antidepressants by the psychiatrist who diagnosed me with dysthymia but I’m honestly pretty scared of some of the side effects like gaining weight. I’m currently underweight actually and could probably put some on just to stop my Mum’s grumbling and make buying clothes less tricky and look healthier, but I wouldn’t like that to happen because of taking medication. And so far I am managing with just anti-anxiety meds. I’ve learnt over the years some tricks to get out of sleep paralysis or to prevent it, but it doesn’t work all the time. Sooner or later it will always catch me.
3. Have you ever had a sleep study on you, and if so, what was recommended? – No. I would kind of like have one though, and my Mum says I should, because, in her opinion, my sleep is weird and I should get it checked out if not because of any concerns, then at least out of curiosity. And yeah, it’s interesting, I am curious, though I don’t know if my sleep is objectively that much of a phenomenon, I guess not, my Mum is just very typical. I’ve never had an opportunity though, and I don’t think there is any sleep clinic in the area or anything like that, I don’t know anyone in person who’d have a sleep study done.
4. Has your doctor prescribed medication for your sleep disorder, if so, what has worked for you? – Not directly for sleep, mostly for anxiety, but that has affected sleep too. I took Hydroxyzine for a while as a child, and then my psychiatrist put me on it again when I was 17 and got the reactive depression diagnosis and told her about the anxiety I was having. I’ve always heard good opinions about Hydroxyzine and that it works well for people, that it’s such a safe medication and all but it wasn’t so for me. It was making me extremely groggy, I would be just switched off and away from the world for hours and hours and hours, the only thing I could do on it was sleeping, and then I would wake up hungover and with a headache. Perhaps it was because I hate being groggy and foggy and not in control and thus my anxiety got worse, but in any case, I really didn’t feel like it was working for my anxiety at all. The only times when I have found Hydroxyzine very helpful, life-saving almost, have been when I felt really depressed, only feeling like sleeping, or very unstable and overwhelmed, like last year after the first of my final exams when I was super triggered I just slept the whole night and most of the day away on Hydroxyzine afterwards, worked the trigger through while sleeping and woke up (almost) a new person, (almost) ready to face another final exam. Hydroxyzine is also an antiemetic, so when my emetophobia is through the roof and for a very sound reason – like a norovirus raging in the house – it helps too. And I don’t mind sleeping norovirus invasions through at all. I still have it and can take it when I need but that’s rarely. I don’t see my psychiatrist regularly, so after some time I went to my GP with my anxiety problems and told him the whole Hydroxyzine and anxiety and messed up sleep story, and he put me on Afobam, which as I heard later from my psychiatrist is more suitable as a sleep med for those people who tend to wake up a lot rather than those who can’t fall asleep, as is more often the case with me, but it works great for me so I’m still on it. The thing is, it’s highly addictive so I am only taking it on as needed basis. That is, when my anxiety is really severe or when I want to regulate my sleep cycle at least for a while or when I just know I won’t sleep and I have to sleep. If I need it for a few days in a row I take only a half of it. That’s not a perfect solution definitely, but at least when I take it, it works. I often do feel groggy after it and sleep for a long time, but I don’t feel hungover like after the Hydroxyzine and it noticeably improves my sleep quality, I wake up refreshed and well-rested most of the time.
5. Have you ever tried home remedies to alleviate your sleep disorders? – Loads of herbal-based supplements and some other OTC products that worked just as well as candy, melissa tea which apparently is placebo, melissa essential oil which apparently works very well but not for me, smelling lavender which probably didn’t work because my sense of smell doesn’t work too well either haha, CBD oil which I am still trying but with no great results, I guess the concentration is too low or something, I’d like to believe that it works, niacin, which I really tried supplementing and wanted to but as high doses as they say that you should take for mental health were not doable with me because those pills are really big and I have a bit of a trouble swallowing big pills, let alone five or more at a time, and even when I broke them into halves or thirds it was still tricky to swallow such amount of pills in one go, it was crazy. 😀 I was able to notice some small improvement on it but I just couldn’t continue this way, my life would evolve around swallowing niacin three times a day and dosing it the right way, and then they say for it to work you need to take other stuff too, because it changes the absorption of vitamin C, and the niacin itself is absorbed better with something else. Ugh no thanks, my life is way more interesting without all that, and what if that cocktail wouldn’t work? All my efforts would be wasted! 😀 Also, I am trying out progesterone cream which also my Mum is using, which has directly nothing to do with sleep obviously but my Mum, being a great lifestyle geek has read loads of material on how helpful progesterone supplementation can be for women and also how much of an effect hormonal imbalance can have on mental health, and my hormones aren’t balanced even just because I have hypopituitarism. My Mum says it works miracles for her, though I guess for her it’s a bit different since she’s going through menopause so that must be rather obvious. I can’t say much on that cream though because I’m only using it since July, and it needs some time to have noticeable effects. What helps me is Misha, listening to music, reading before sleep, doing some visualisation exercises, prayer, having my feet warm – they’re usually cold so I like having hotwater bottle and when it’s cold outside I won’t fall asleep without it ever 😀 – trying to implement some sleep routine, though for me that’s really really difficult and never stuck for long, I am trying though, so I hope that counts and makes it better than it would be without it. Doing something relaxing always helps, whatever I find relaxing at the time. Oh, I nearly forgot, I also had numerous trials and errors – more of the latter – with melatonin, which at first didn’t work, and then every time I got back to it I had very nasty nightmares every night I was on it. I’ve heard that could be transient, but no one told me how long that transience should last and every time it felt like a bit too long to keep trying and waiting so I don’t think I ever will again. With my sleep paralysis, good sleep hygiene and some sort of a routine/schedule helps. I can’t always have the latter, but what I’ve found helpful is not napping, though I was never an enthusiast of naps at all, they just make more chaos. No napping, and no laying in bed awake in the morning for ages, as I carelessly used to do especially at weekends. Suddenly, after a while I become surprisingly, extremely sleepy again and I don’t even notice when it sucks me in. Also, generally I know I need to avoid such things like waking up and then going back to sleep after a while, because that very often brings sleep paralysis. But I never know how long that while should be, seems like even half an hour break between one sleep and another at night is too much and is risky, so if I want to avoid sleep paralysis I should just get up and start to live. Of course, that’s not always practical, because even if I wake up at night I may still feel like I need more sleep, or will be very tired during the day if I’d just wake up and start my day in the middle of the night, so sometimes I do this, but sometimes I don’t. The neurologist told me that sleeping on your right side helps with sleep paralysis. I laughed at it internally and thought it must be some superstition, the more that I much prefer sleeping on my left side, it’s just comfier and I read about some weird study that has shown that it helps the brain to clear from all that could be potentially toxic while you sleep, and I’m all for keeping my brain healthy. But it makes some sense. Sleeping on my right side, as I’ve noticed so far, won’t prevent sleep paralysis if it’s inevitably going to happen, but it’s less intense and shorter. The worse is when you sleep on your back, and that seems to be the case for most people. I hate sleeping on my back but it used to be the position I laid in when awake most of the time so then it hit me hard, now I try to avoid it if I can.
   1.    What’s the longest amount of time you went without sleep? – Thankfully only a bit more than 2 days. The good thing about my insomnia and Zombie days that I feel really lucky about is that I don’t have it the way some people do, that I would go on for days without sleep. If I have a Zombie day, it’s awful, but at least it means that at night I will fall asleep like a baby, and, usually, sleep like a log until early morning, and my sleep cycle will reset nicely and will be really decent and in line with my time zone for a while. Unless I am trying to play a hero and by night am so exhausted that my nervous system just gets overloaded and I can’t fall asleep despite you can’t really say I’m fully awake and sane by then.

A shitty, Zombie day.

Yeah, today I have another Zombie day, which means, if you’re unfamiliar, that I’m after a night of completely no sleep. I think the reason of my sleep being so poor recently is that I’m significantly anxious over many things. A bit more than a week ago my term exam session started, which is always some stress – almost none in comparison to final exams that I’ll have in May, but still, makes me quite tense. Besides, almost at the same time my brother picked up some tummy bug or something and was sick, with vomiting and all the attractions, which obviously triggered my emetophobia. It lasted for very long for him and then Dad got infected too and it lasted very long too, so I was freaking out literally, because they were sick and because I could get sick and anyone else could. I didn’t get it luckily, but still don’t fully know if it’s actually over for them. Moreover, my Mum had gastroscopy and colonoscopy on Tuesday before Easter. Well it didn’t regard me directly, but still it made me feel anxious for some reason, I almost felt like I myself was going to have gastroscopy, which would be just traumatic for me I guess and I was stressed for Mum. Don’t know why I reacted so strongly for it. And then Mum had also some not serious complications after that which contributed to my anxiety. It’s crazy. and my final exams are in a month now, which is the thing I’m most anxious about currently. It’s not only about the exams themselves and whether I’ll pass them, but also about the circumstances in which I’ll be writing them. I’m not sure whether I finally told you or not, I guess I did, but I won’t take them at my own school that I formally go to. My school is a normal, mainstream school and my Mum was kind of afraid I might not get all the adjustments I could get if I’d write at a special school for the blind, especially as for math, as this is the subject I particularly suck at and is very difficult for me. I agree with it and so my Mum came up with the idea she’ll ask the headmistress of one of the schools for the blind – not the one I was going to as a child, a completely different one – if it would be possible for me to write there. There was a lot of paperwork and other stuff involved, but it was possible and I got the permission finally. But this school, although is much closer than the one I was going to, is still quite far from where I live, in a different region. So we would have to stay in the boarding school. I know, I won’t be there on my own, there will be Mum and maybe Zofijka with me, I will live with them and the circumstances will be completely different, we’ll be out of there most of the time, I desperately try to think rationally about it, but the anxiety is still there. I know it’s so irrational and stupid and all, but it doesn’t seem like I could do much about it now. I’ll probably just have to face it and see if it was worth all that anxiety or not. Also, I’m having lots of nasty dreams recently, with sleep paralysis and without and they scare me so so much. Just last week I had sleep paralysis twice. It’s knackering and makes me feel just helpless. Often such dreams leave me anxious for hours after they pass away. So yeah plenty of issues that may contribute to that lack of sleep.

Luckily I didn’t have to do anything important today, apart from preparing to my History exam which I’ll have on Monday, but it wasn’t hard to do and I actually could do it tomorrow as well if I really needed. I feel absolutely crappy today, with no energy (despite three strong coffees), lots of anxiety and depression, but that’s normal I guess for everyone who didn’t sleep for an entire night, or at least it’s my normal when I don’t sleep properly, the more tat other things get in the way.

Recently I was writing that I plan on buying a new Braille-Sense, and it turned out that it’s time now for applying for funding, so I did some of that endless paperwork with Mum. Well I guess don’t have much more to say now. Just had to rant a bit.

How are you guys doing? 🙂

Question of the day.

Are you a night owl or an early bird?
My answer:
My sleep patterns seem to change very quickly and I can easily fall out of my normal sleep cycle, but overall I am definitely a night owl. It is not a big problem for me to stay up very late and I often do it just because I want. I find night time a particularly good time fr writing anything so I often stay up late if I need or want to write something. Usually I am the last person in our house to go to bed, unless Misha is particularly full of beans or slept a lot during the day, or unless my brother goes out for the party or something. I like to get up early, but usually don’t wake up very early unless I just woke up in the middle of the night and couldn’t fall asleep again. Getting up early is generally harder for me than staying up late and my brain functions definitely better in the evening than early morning. You? 🙂

Song of the day – Alex Kunnari ft. Tim Hilberts – Wake Me Up.

Hi! 🙂

Today’s song really speaks to me. I found it on Spotify last year. Those of you who use Spotify probably know their Daily Mixes with music you like and some new stuff in the same vibe. So back then I was listening one of mine, which had mostly Norwegian electronica in it, as I listened to it a lot at that time. And then this song played and I was rather surprised. It wasn’t really my style musically. Well, honestly, it wasn’t my style at all. And after all Alex Kunnari doesn’t really sound very Norwegian, rather Finnish (well unless he’s from Finnmark), so I was wondering a bit why it landed here. But then I started to listen to the lyrics and it suddenly caught my full attention. Oh gosh, what is this guy singing about? It sounds like… pretty much like me. :O What there was “like me” was the fact that I could relate to this song with my night experiences, which as I know now is sleep paralysis, and false awakenings. But back then, although I’ve been struggling with these and other sleep sensations regularly as long as I can remember and was very frustrated every time it happened, I didn’t have the name for it, didn’t know anyone who had it and what even more frustrating, couldn’t quite describe to anyone the content of these dreams and how it felt to have it in general. And so I felt a bit comforted hearing this, as I felt like if there’s song about it, there must be someone else on Earth, even just one person, experiencing this in one way or another too. That didn’t change anything in the grand scheme of things, but at least lessened my feeling of inadequacy which I think is strong enough in other areas of my life. So I really like this song now. 🙂

Anyone else not sleeping?

Goodnight, good morning or whatever people say at 04:10 AM. 😀

Yeah, another night of no sleep. With the difference that this time I won’t be able to catch up on sleep in the morning if I’d become sleepy as I have things to do in the morning. So unless a miracle will happen and I’ll get an hour or two of sleep until 6, I think I have a zombie day ahead, as I always call days after a completely sleepless night. Ugh, I hate it so much. But maybe if I’ll go zombie for a day, my sleep routine will settle back and my brain will get in which timezone I am. The good thing however is that Misha’s with me fast asleep in his basket, giving me some more sense of safety, and, which I am very gateful about, my anxiety is definitely not as overwhelming as it was last night. I mean it still is there, but it isn’t so exhausting and I am more functional so after like two hours of tossing and turning I got up and started doing some nice things like I wrote a bit of a next chapter of my book. It’s called “Jack Hamilton” and I’ve been writing it for years, finding comfort in it. Jack Hamilton is just a simple guy, but with very complex life and he’s quite funny, he is actually writing his story on its own. I often plan to direct his life and make him do what I want, but I end up writing something completely different like he’d want to write a life scenario for himself. I planned to publish Jack, but firstly now it’s definitely too long, and secondly, he became my close friend over the years, someone extremely close to me, almost ten years now. My God I can’t believe I can manage with him for so long. He isn’t easy to live with. And although many people know I’m writing a book about a guy called Jack Hamilton who is half Irish half Swedish, even know some of his life story, I’ve never shown anyone more than my notes before writing an actual chapter. I feel like my relationship with Jack, although he’s only my creation, is very intimate is some way.

Besides Jack, I’ve been reading my book, snuggling Misha, still have music on and I think soon I’ll go to bed again just in case I might fall asleep, although I highly doubt it could happen.

Who else isn’t sleeping for whatever reason?

I just “loove” weird, scary dreams.

So as I wrote yesterday, today it is my Dad’s name day. We expected quite a lot of people to come in, my Mum’s and Dad’s family and Dad’s friend, but it’s a few minutes after seven now as I’m starting to write this and as for now only my aunt with her family visited us late in the afternoon and now there is Dad’s coworker and I think that will be all, and, to be honest, I am happy about that and my Mum is too, although we are both happy for different reasons. I am happy as I hate crowds and all related things, my Mum is happy because she won’t have to make as much food as she thought she’d have too.

I’m having quite a good day today and it would be really great if not my leg, which is still burning, and very poor sleep I had last night. Straight after I wrote yesterday’s post, I went to bed, just to lie for a while with Misha, as I was really tired of all that pain and all and maybe nap for half an hour or so. But I fell asleep and slept really heavily so that didn’t even hear poor Misha meowing to let him out, but luckily my Dad did. Finally my Mum woke me up at 11 PM asking me if I am going to sleep the whole night through in my dress and day clothes ’cause she doesn’t really think it is a good idea lol. As it wasn’t my intention and I also didn’t think it’s a very good idea, I showered and had a cup of tea, but then was awoken for too long I guess to fall in such heavy sleep again. So after some time I gave up and started to play with Misha, who is in a very friendly mood now again and acts really weird as for him and seems almost overly sociable. 😀 I can’t figure him out, I think. We both finally fell asleep around four, but now I think I could as well stay awake until all the civilised people in my time zone will wake up too, ’cause as soon as I fell asleep, I fell in the swirl of totally weird, scary and exhausting dreams with some extra attractions like sleep paralysis and false awakenings, I don’t know how many of them I had, but really really many and some part of my brain which stayed more or less conscious all the time when I was having these dreams was wondering whether actually I will ever wake up for sure.

It was like dozens of pretty realistic scenarios of my day, but each of them was very dark and scary, even though seemed normal, but everything around felt so incredibly gloomy and ominous and there always was a moment when suddenly lots of creepy things started to happen, most often pretty speciffic things, but I don’t feel very comfortable talking about it in detail, and deep down I always knew that actually I am still sleeping, but once those creepy things started to happen I knew it for sure. There were often moments I wanted to wake up or test whether it’s a dream or reality, but I either couldn’t move or my brain was playing tricks on me or everything was too foggy. I wanted to scream, but I know I didn’t, even though I dreamed I did but just no one heard me. I wanted to do so ’cause I thought then someone will come and wake me up. I was probably much more scared in all these dreams than it was worth it, I always am, in these dreams I was even thinking that now I will always be really afraid to fall asleep and wondered if I will ever truly believe I woke up, I was more frustrated and exhausted when I finally woke up, than scared and I often have much more scary dreams, but still, it was scary and I am glad Misha was with me, even though I didn’t think of it while having these dreams and I don’t think it could help me if I knew it then, but, you know, when you wake up and you realise you wasn’t physically completely alone in all that, it makes a slight, but comforting difference. Even though Misha wasn’t conscious at all what’s going on with me and I suppose no one would be. I hate waking up alone after such shit.

So it was half past seven when they finally let me alone and then Misha wanted to go out so I let him, but I was very exhausted after those dreams so I took a risk and decided to try to get back to sleep and maybe get some healthy sleep.

I didn’t have dreams like that, but I know I dreamed about something which frightened me, but it wasn’t any form of lucid dream luckily now, so I don’t remember it. But I didn’t really feel well-rested when I woke up. I slept until nine, but as I said I feel like I could as well not sleep at all. Hope tonight it will be better.

My Mum wanted to go shopping with Zofijka and I decided to go with them ’cause otherwise I would be home alone just with Misha, my Dad was working outside and Olek was at work. I like to be home alone, I really enjoy it, but I truly hate it when I’m particularly anxious or had some scary dreams. So we went for some groceries and bought a present for Dad, Zofijka wanted to buy some books and I went with my Mum to our mobile network operator to change my phone number. I felt like I needed to do it for some time already, just for safety reasons, as I have a friend from my school who was getting on my nerves recently, calling me or writing to me on every possible communicator and wanting me to do different things for her. I mean, it’s not like I don’t like helping people or it bothers me if people want a lot from me, but it was like she couldn’t accept I have other things in life of more importance to do than make her happy and be always available for her, she always seemed very hurt when I couldn’t or didn’t want to do something for her, and I felt like she takes a lot of people’s helpfullness for granted. Plus I don’t have good memories from the school and she just loved to talk about it and recall old, in her view, good times whenever we were talking. So at some point I realised that for my own well-being I definitely need to cut her off. And so I did. And life seems much more peaceful now, and although I feel a lot of sympathy for her, because she seems to be a very lonely person and I suppose I hurt her, I don’t regret my decision much, I never felt close enough to her to regret it. One thing I regret is that with cutting her off, I had to cut off or limit contacts with some other people from the same environment, with whom I maybe wasn’t best friends, but we liked each other. But I know they wouldn’t understand why I feel so uncomfortable around that girl and why I want to avoid her. Sometimes unfortunately it is so that when you make a choice and you know it is right, some of the consequences might be a bit hard, but as I said, none of those folks were my best friends, they were just nice people I liked and who as I suppose liked me in return. Luckily we don’t close to each other with that girl, we are in two different part of the country, so technically cutting her off was very easy.

When we got home I did a few Welsh lessons and I absorbed quite a lot of vocabulary today which I am proud of.

I also spent quite a lot of time with Zofijka and Misha.

I hope you all are having a nice Saturday.

Oh wow, I would never believe that writing a simple post will take me so much time! :O It’s already after 10 PM. But I always multitask and did a lot in the meantime, so I guess I shouldn’t be so surprised. Sometimes when I was writing some longer posts with some of my more complex musings for my Polish blogs, writing the whole post could take me even a few days, so it’s my normal, I guess.

I think I’ll soon be off to sleep, so wish me good luck. 😉 I hope this night won’t be so scary and Misha will be so good and sleep with me. And I wish nice dreams to all of you who will go to sleep soon as well.