Ten Things Of Thankful.

I haven’t participated in

Ten Things Of Thankful

in ages, I saw the post by Astrid of A Multitude Of Musings last weekend and only realised I haven’t linked up in a long time or so it feels. So I’m very happy that I’ve managed to do that this week, although I doubted I will be able to do it in time. I’ve been feeling rather crappy emotionally and moodwise the last few days so a bit of gratitude will be a good thing.

  • Because it is Independence Day in Poland, the first thing on my list is just that – our independence! That we have been an independent country for 101 years now, that we have had such difficult history yet are thriving, and in the recent years it’s visible more than ever. I’m grateful to and for all those people who sacrificed their lives for it to happen, who went through all sorts of horrific experiences or personal losses during WWI. As I said in the song of the day post I think we so often tend to take it all for granted. I’m also so extremely grateful that I’m Polish. I love many countries, and even more languages to pieces, but I often feel like I wouldn’t like to be born any other nationality than Polish, and it would be such a flippin shame if I wouldn’t speak Polish. I probably would never learn it because it would be too difficult, so my brain would be so much poorer, and would I want to learn languages as I do know, my start with it could have not been as easy with a less complex mother tongue. πŸ˜€ Living in Poland has its downsides just as anywhere else, but there are so many things that are just non-existent in all other countries and that are absolutely great.
  • That I won’t have to pay for the repair of my new computer. As you may remember, it got damaged during the delivery, so the company through which I bought it appealed to the delivery company so that they would cover the cost of the repair, because it was actually not working at all. In the end they said they’ll cover the cost of a new one. I’m also grateful for that somehow my laptop is still functioning. I really don’t know what’s going on with the drive, it’s not working properly and I really don’t like this limbo phase lingering on forever, especially that getting used to a new one will be even more stressful, but at least I do have a (more or less) working computer. Otherwise my brain would stop working. πŸ˜€ Okay, maybe not straight away, but not long afterwards. So I hope I can keep it (the computer) alive as long as it’s necessary. And I’m doing something on it most of the time so I bet it’s exhausted.
  • That my airways are doing better. This time of the year is allergy time, and then it’s very easy for me to get my seasonal bronchitis. It felt like I was going to get it very soon but to my relief I’m feeling much better, and hope that doesn’t mean the bronchitis thing is just going to be delayed, but that it won’t come this year.
  • (mentioning self harm and other stuff, nothing graphic. Please skip if you feel it could be triggering) My bed. I spent all morning in bed and got out of there long after noon. I’ve been in a shithole and just didn’t have the mental energy to drag myself out of bed whatsoever, and the perspective of having to interact with people was overwhelming. So, when you can’t get out of bed, it’s good when you have a comfy, double bed like I do. I’m still rather shitty though more functional, generally that doesn’t happen often to me that I seriously can’t get myself to do things, I often struggle with it but can do it in the end, so today was pretty hard. I’m just feeling emotionally overloaded lately and my inner critic Maggie is having a hyperactive phase or something, she’s hyperactive most of the time but sometimes more than ever and then I feel like annihilating us both. Oh and another thing I’m thankful for that is related, I’m thankful for not cutting at all lately! I’ve managed to go no cutting since July which is not my life record but at some point this weekend I was sure I’m gonna do this but I didn’t. I guess apart from my will-power what held me back was that now I have that weird sore thing on my leg I’ll have more than enough scars on my legs, and I usually cut my legs because it’s not very likely to be noticed. I guess the cutting crisis is over for now so that’s good. I’m not sure why I’m having this overload thing right now, I guess just because I haven’t had for quite long so my brain decided it’ll be the right time, and I suppose a lot of small things triggered it.
  • painkillers. I’ve had a bit of a headache today, not a strong one but annoying enough for me to decide to take something for it as I had a hard time focusing on my writing. Luckily it helped as now it’s lessened and hopefully will go away completely soon.
  • My Inner MishMash Readership Award. I’m so excited about making it. It’s a long weekend now but hopefully tomorrow I can get the last things I need for it and then will be sending it out and revealing the winners.
  • Misha. Misha is such a tremendous support for me. For the last few days he’s been very moody, but he has his cuddly moments now as well when he wants me to cuddle him for like 15 minutes and is so cute then. It is rare for him so the more I appreciate it.
  • my Dad. I’ve been having a bit hellish times with him but that makes me feel like the more I should include him. I’m very grateful that he employs me, and helps me in a lot of practical ways, though being around him is a real test for my patience more and more, gradually and when I’m having those emotional overloads and all that self-loathing stuff I’m particularly easy to get angry with people as well.
  • my mum. Just like my Dad, she is very practically supportive of me so I wouldn’t manage without her, especially that she is my proxy when dealing with people, which I appreciate hugely and can’t imagine what my life would be like without a “peopling” proxy hahaha.
  • All my blogosphere friends and penfriends. They make it a bit lighter in the shithole. As I said, my family is brilliant but I can’t really talk to them about most of the stuff that is going on in my brain, except for with Mum about some of it that she can relate to in any way, and it’s also extremely hard to reach out to people when I’m feeling like I do right now. So it’s good that I have people online these days. Even when I can’t or don’t know how to talk about my mental health struggles it feels good to just be able to chat with someone who thinks similarly, and it makes a difference when you know you’re not alone.

If this list feels a bit forced to you it’s because it was, haha. But I just felt I needed to write something and I guess we should be grateful for even the smallest things, shouldn’t we? πŸ™‚

Working On Us – rejection.

I haven’t participated in Working On Us by Beckie of

Beckie’s Mental Mess

for a while, so I thought I would this week. THe topic of this week’s mental health prompt is rejection.

1. Have you ever been rejected by family/friends because of your mental illness/disorder?

No. I think it’s mostly simply because I usually do not tell people about my mental illness or such things, or if I do it’s very briefly if necessary. I have experienced some negative or invalidating reactions, in particular from my Dad, which often felt very hurtful to me, but I wouldn’t call that rejection. Rather a lack of understanding and flexibility in thinking. My Mum is very supportive in all sorts of practical ways and I wouldn’t do without her, she is also more open-minded than my Dad, she tries to understand it but it’s often not easy for her as she’s never experienced things that I have, and often says hurtful things more or less unintentionally. I used to struggle much more with that but I’ve never thought that it could be their way of rejecting me. Other people are far more likely to reject me because of my blindness than mental illness.

2. Has anyone mistreated you to the point you felt like you were nothing?

Don’t know if it made me exactly feel “as if I were nothing” but I had experienced some emotional abuse at school, particularly from one of the boarding school staff, who was humiliating me in a veiled way and diminishing me and all I did, which caused me a lot of confusion and feelings of inadequacy, and made my self-esteem drop quite a bit, and it never was particularly high. It took me a lot of time, only as an adult, to figure all that out and make some sense of that situation, because for a long time I felt like it kind of wasn’t real and that I perhaps misunderstood her words or actions or something like that. There were also many other situations there where I felt like people were making me feel very shitty about myself but it wasn’t as bad and I think wouldn’t even affect me as much as it did if not my overall life situation – that I was miles away from my family and could never fully adapt there. – When I got older I frequently experienced quite spectacular reactions of people to my disability, like, I assume some people must be terribly afraid of catching optic nerve hypoplasia from me or something, I’ve had people treating me like I was a mass of air. That felt very unpleasant for sure and as if I was nothing to them, but I can’t say I cared very much or felt significantly hurt, it was frustrating and annoying, but more funny than seriously hurtful, it’s funny when people are so silly that they’re so scared of you that they can’t talk coherently when they see you. πŸ˜€ It’s paradoxical when people are scared of you and you’re a sociophobic.
3. Have you ever confronted the person/persons that have made you feel this way?

No. When it comes to that staff person, I was a child then, I didn’t really feel safe talking to her at all, let alone confronting her, also, I’m sure you guys know how it is with toxic people, emotional abuse and all that. I actually had no clear idea what was going on. I wouldn’t think it was abuse or that she was treating me wrong in any way. First because I was a child, even if fairly intelligent and enjoying observing and analysing people’s behaviours, and second because it’s all always so veiled and subtle, I wouldn’t know how to talk about it to her and not sound irrational or something. I think I would still have trouble in such a situation if it happened to me now, it’s just tricky. I tried talking to another staff member who was a really competent person and whom I quite liked, but she didn’t really get it, I honestly don’t think she believed it because that other woman was always so positive and everyone saw it, so how could she do such things? I only talked to her because my Mum told me to do so.

4. If the answer to #3 is β€œYes”, was anything resolved?

When talking to that staff member didn’t help my Mum talked to her – that other staff member, not the one who was nasty to me – and things have changed a little for good, but not significantly.

5. Has rejection changed you in any way? ie… Self-Esteem, Depression, and/or changed your opinion the way you feel towards the human race as a whole?
Wellyes it did. I have avoidant personality disorder in which fear of being rejected is one of the features, and it often develops in people who have experienced it early in life. I had never thought about it this way, but some time ago my Mum wanted to talk about it and her theory is that when I went to that school (I was 5) I might have felt rejected by my family and confused about what was happening. I just never saw it this way, I always thought it was normal I must be there and that the problem is rather that I can’t adjust there and accept the situation. But perhaps when I was 5 I didn’t understand what it was all about, why I had to be away from home, and why people were coming and going, or taking me home for a few days and then leaving me there again. This theory makes sense to me now. But obviously I don’t blame my parents now or anything like that because I know they didn’t feel like they had a choice and their motive wasn’t that they wanted to get rid of me. But I think such an experience could successfully make me more sensitive to rejection. I wouldn’t say this is the strongest AVPD symptom in me, like that the primary reason why I avoid people, why I struggle with social situations, why I don’t do socialising is because I’m afraid of rejection. I don’t think that’s most important here, though at the same time it’s hard to say what is that core thing, I just think it’s a mixture of loads of things. I’ve heard about many people with this disorder struggling with this particular thing the most of all. For me, I’m not desperate for acceptance from everyone, I won’t typically tell you that I like something just so we would agree and be friends and would like me or I won’t tell you my opinion on something because yours may be different. I don’t go around in search of people who will accept me and if some relationship doesn’t go well or if I see that someone doesn’t really feel the connection I won’t desperately try to keep them. I do value my individuality even if at the same time I hate it because it makes me feel like such a flippin’ alien. I guess when I interact with people, they may see I’m anxious or depressed or such things, but I think I’m pretty good with hiding my AVPD related difficulties in daily life or in casual interactions with people, but perhaps that’s just what I think. I have no problem with, for example, people I know online for a little while when they suddenly stop writing back to me or something, unless there are some other things involved, but when it’s people I feel attached to that reject me or I feel that they reject me it’s crushing. For me, the fear of rejection manifests more in the way that I hate being clingy, for example, I just hate clinginess, both in myself and in other people. I don’t want to feel like a burden for people or someone needy, either emotionally or in any other way, yet I often strongly feel like I am. I often don’t let myself close enough to people I would like to be close with, and keep at least a bit of a distance, ’cause then they can’t reject me. Or if I have a possibility, first I do an in-depth observation and analysis of a person before I start talking to them. With people with whom I am more close with I always sort of have a radar on, which is in a way very yucky and a bit paranoid, I think I have this particular tendency from my Dad, but then again, I’ll do everything for them not to realise that. Often I’m just simply scared of closeness with people. I’ve realised some time ago that I often test people that I meet and that I feel we could be friends, or when I just feel very insecure, I do it often almost unconsciously, kind of automatically. I virtually only realised I’m doing it when I got diagnosed and was reading about it a lot, I had no clearer idea before that. It feels quite yucky too but you do have to protect your brain don’t you? You’ve got only one and when it’s already screwed up to begin with you have to be careful. I suppose they’re not aware of that testing thing, or maybe it’s just my wishful thinking. It feels rather gross when you think about yourself that you’re “testing people”, but that’s true, even if not always fully voluntary. If the test is negative, I have the possibility to retreat before they reject me, it makes me feel more in control of my own life and feelings. I’m often afraid though that I would become attached to someone so much that I won’t be able to notice it in case they would no longer accept me for whatever reason or never truly did, and then they would suddenly reject me without me even being able to prepare for it emotionally in advance and accept it.

6. Or, has rejection done the opposite and made your stronger and more resilient?
I don’t think so, but I do think my tolerance for it has increased over time.

A mid-week coffee and everything else share.

I wanted to do a Weekend Coffee Share post this past weekend (finally), but didn’t end up doing it, of course. I planned to do it on Sunday but had a terrible headache for pretty much all day and didn’t feel like writing anything overly complicated. And, actually, I’m not even sure what I’m going to write about because there’s not that very much going on, or I can’t write about everything that is publicly. So we’ll see where this coffee and tea and everything else share will take us. I hope you’ll join in.

Get yourself a mug or a glass of something delicious to drink, maybe a snack or a meal and let’s get started. I’m just going to drink water because that’s what I feel like drinking right now, and I’ve actually just had supper. But if water doesn’t feel sophisticated enough we can pretend it’s champagne because my water bottle is glass and, according to my Dad, looks very much like a champagne. πŸ˜€ You can have some of my Mum’s chicken and pasta casserole or bring something to the party yourself. πŸ™‚

If we were having coffee, I’d ask all of you how you’re doing…?

If we were having coffee, I would tell you that I am getting more and more excited and thrilled about my project of My Inner Mishmash Readership Award. The official announcement of the winners is going to take place on November 26 (I would like it so anyway) the day when the awards will be sent out to people. I tell everyone that it’s the first year in a long time that I’m excited about Christmas time and can’t wait for it, hahaha. I’d like to make this award my yearly, Christmas tradition, unless the winners will be exactly the same every year. But it’s also quite stressful. I’m not preparing it on my own, my Mum helps me a whole lot obviously and I depend on other people too to prepare some things, so I’m quite stressed out and desperately praying that it’ll be all ready on time, and rushing my Mum all the time because we haven’t even got the half of it done yet. My Mum takes it very slowly with such things, and is often late, so I’m glad I’ve started it out in late September, and if it gets very hectic I might get to it even earlier next year, just in case. But anyway it’s gonna be lots of fun I think, and I hope my winners will feel appreciated and I’ll make them happy.
If we were having coffee, I’d tell you that our dog, Jocky, who is 1-and-something-year-old, has been fixed last week. He looks so poorly. It was necessary because there is an awful, old bitch in the neighbourhood who seems to appeal to all the dogs in the area and attracts them with an unbelievable strength. We didn’t want him to go there, and not letting him go was so awful because he would howl all nights and seemed so unhappy. Now he just seems miserable, and the whole experience of getting Jocky fixed was very unpleasant and unsettling for Zofijka, but I believe it’s all temporary.
If we were having coffee I’d tell you that I had a Zombie day on Wednesday. My horse riding instructor offered me that I could go riding that day but I said no, because it just didn’t seem right to ride on a Zombie day. I feel dizzy and floaty on a Zombie day and so my balance on horseback would be even worse, and that would only make me more anxious. Also, well, it requires a good deal of focus for me to ride and do all those exercises that I do, and to do them well, so I would just feel disappointed with myself, and obviously you never have enough energy after a sleepless night. I went riding only once during a Zombie day, and got a massive panic attack and couldn’t recover for ages, and I don’t normally get panic attack as my anxiety is more of a chronic and generalised kind. Anyway, I didn’t go and had a very lazy, hazy and crazy, lousy and drowsy day at home, but it was one of such things that no matter what I would do, I would regret it, so all day I was like “Oh no, why didn’t I go riding? What a pity I couldn’t go riding. Maybe I should go riding? Why did I miss my riding this week?”. Especially that, as you may remember from my post about Zombie days, I struggle a lot with decision making on such days. By the evening I was absolutely exhausted but, already in bed, I tuned in to BBC Radio Cymru and realised with a thrill that this was the day on which the BBC Radio 2 Folk Awards ceremony was about to happen, and my current music crush –
Gwilym Bowen Rhys – was one of the nominees for the Folk Singer of the Year Award. So I switched to BBC 2 and, instead of going to sleep as a proper Zombie should at 9 PM, if not much earlier, I listened to the ceremony, and enjoyed it a lot because there were other people too that were either nominated or won some awards, whom I knew and liked. A bit sadly, Gwilym didn’t win, but oh well, I think he has a chance to do so in the future if he’s been already nominated this year. The next day, my instructor said she could fit me in as well, but I decided not to go again, I just didn’t feel quite well mentally, just not in the mood whatsoever.
If we were having coffee I’d tell you that, thankfully, last week my instructor was flexible and could also fit me in on Friday, which I did accept and went riding, as I felt much less shitty. Still not very well but I thought I could manage it and I don’t like having too long breaks because then it’s just harder and I feel more anxious and unsettled beforehand, and it’s just a pity when I have to miss a whole week, and, because my instructor is very busy, it does happen a lot of the time. I was very anxious beforehand despite I still take my medication before riding to feel a bit more at ease. It took me a long time to relax, the more that we decided to go to the forest and ride there. I hadn’t been riding in the forest for about two years! And I had to sort of get used to it again. To the different ground and landforms and it just took me a while to feel more confident. I generally love to ride in the woods far more than just in the hall where you go round and round all the time but this time it was a bit more stressful than enjoyable. I just hope next time, whenever it’ll be, will be better. It was Rudy’s 20th birthday (60 or 60-something in human years) so he’s got lots of carrots afterwards. But before we finished, we came back to the hall for a while, and I did quite a few circles of both sitting trot and rising to the trot and some balance exercises, and riding sidesaddle – like ladies used to in the olden days. – We have no sidesaddle as such in the stud but I was just riding as if I was in a sidesaddle, in such a position. It is also a very good (and very scary) balance exercise. Previously I was able to do only one circle of it and was all dizzy afterwards, but this time I dared to do a few circles, though still with my instructor’s assistance. I am hoping I’ll soon get better at it and it’ll be less scary haha, and then maybe will also be able to try riding backwards again. I used to once but could only manage a few steps and it scared the shit out of my brain. πŸ˜€ But yeah, overall I enjoyed it a lot. Rudy’s hair is very thick now though, for the winter, so he was completely worn out and sweaty when we finished. I just have to remember to take my allergy meds before the riding, and not after, haha, so I can be more efficient and have my airways clear. My horse allergy is not strong but it really is a pain in the neck, especially if you forget your meds. πŸ˜€ I won’t be able to ride this week because my instructor is very busy.
If we were having coffee, I’d tell you that I had an awful day on Sunday. I had lots of nightmares and woke up with my head throbbing like hell, and couldn’t get out of bed, so I didn’t until afternoon. A very lousy Bibiel I was! Zofijka fell down and got a mild concussion which scared her, but then she said that after all she doesn’t use her brain anyway, so she doesn’t care if some of it has spilled out. How honest! πŸ˜€ My headache went away in the evening but I was still anxious and just blah. My parents had their acquaintances come over in the evening and had a little but very loud dancing party, which really annoyed Zofijka, who was tired and her head was hurting after the fall, and all the noise didn’t let her fall asleep. Thankfully, her brain seems to feel better now.
What would you tell me if we were having coffee?

Brain, what do you want from me?

I’m seriously starting to wonder what’s up with those flippin’ Sundays! I’m recently getting Zombie days exclusively on Sundays, and this month I’ve hit a record. Three Zombie days in a month, all Sundays, including this one. If you don’t know what a Zombie day is, it’s the day after a sleepless night. I call it this way at least. Mondays used to be most often my Zombie days back when I was at school, and I guess that was even worse. To not be able to sleep for the whole night and then having to start a week in the Zombie mode, grrrrr yuck!

Another thing that I’ve been wondering a lot today is what does my brain want. I never know that during a Zombie day. I never know what I want. A Zombie day probably means something slightly different for everyone. For me, it’s a weird, floaty, dream-like, hazy, unreal feeling in my brain and my whole body. I often catch myself wondering “Is all this even real?”. I often get deja vus when I’m a Zombie, and my sense of time is changed. It’s like there is almost no time passing if I don’t look at the clock. I’m often a bit hyper in the morning, and then go into apathetic and zoning out, but I won’t go take a nap because my sleep cycle needs to reset. Sometimes I even mix languages like today. I feel like I’m losing control, and I’m often very anxious, jittery and even very panicky, but I can’t take my med ’cause in such a state of mind it’ll make me fall asleep while walking, as was the case with my horse ŁoΕ›, instead of muffling the anxiety. I am cold and weak and obviously lack the energy, am dizzy, and towards the end of the day if I’m really worn out I sometimes get little creepy hallucinations that make me want to scream with fear but I’m too scared to do that. Is that even normal when you have just one Zombie day? I’m more creative and coming up with bizarre, completely out of the box, apparently illogical but very logical ideas and solutions and theories, and the cool part about them is that I still love them the next day and often listen to my Zombie brain and take what it came up with into account. Perhaps it works like for people who apparently get the solutions for their problems from dreams? I can be a bit impulsive so I try not to do important things or such that need a cooled down perspective on a Zombie day, and I can easily go from something even quite close to euphoria to the darkest depression and an emotional overload, and when something is not going right, I can easily slip into hopelessness, it just feels like things are always going to be this way.

But most of all, I don’t know what I want! It’s so frustrating. I mean, I often don’t know that anyway, but in my Zombie mode, that affects even the most basic things. I’m faint and starving, and badly nauseous at the same time and I don’t know what to do with that. I think for like 15 minutes, “Am I hungry?…”. I decide I am, and then I can barely eat anything. Do I want to write a post, or take a shower? Does it matter? Perhaps not, but I have to do one thing first. But first I’ll rather just sit for the next 15 minutes with my Brain in the Zombie zone.Do I critically need a nap, or can I stay awake until the evening? Yes, I give up, I need a nap! I lay on the bed, and although my mind is swirling between the real world and Dreamland, it can’t quite decide on any of those. Do I want to drink green tea or cocoa? Do I actually want to drink anything? Is it better to be around people and be scared of people or alone and scared of my own brain? How can I know all those overwhelming things if even my brain doesn’t care to decide? Zombie days are weird.

But at some point, there comes a moment when all the controls in your brain go bright red, and suddenly you realise: “YAY! It’s time for sleep! That’s what I want! Sleep, sleep, sleep and sleep!”.

And now I’ve come to that place. I know that what I want is to

wrap

uptightly in all the possible blankets in my room, wrap Misha up cosily and snugly in his bed, and float away into Dreamland. Switch off my brain finally, in desperate hope that when I’ll wake up, it will reset, change the layouts and show me different worlds, both the outer and inner one. Perhaps the Zombie day was what my brain needed. It has been cluttered with unimaginable for me amounts of worries and ruminations over the last week, and a Zombie way is quite a smart way to do a reset. Only, will it really work this time? I am desperately hopeful and deeply sceptical at the same time.

But I guess the time is flying by, my precious seconds of potential sleep are flying away, so, for now I’ll leave you to it, and hope that, whatever is the time where you are, the next time you’ll be sleeping, it will be a really healing, powerfully regenerative sleep.

Do you often get Zombie days? How do they feel like for you?

 

Question of the day.

Do you like to go to family reunions and gettogethers, if they’re a thing in your family?

My answer:

As I wrote in my answer to the last question, not really, as it’s very hard for me because of the anxiety and other mental health stuff, and not feeling the connection with most of my extended family. I will go to some of them mostly out of duty so that no one feels hurt and my conscience is not biting me, but if I have to be honest, no, I don’t like it, and if I can, I’ll avoid it. Smaller gatherings are a bit easier, as are those on my Mum’s family’s side as opposed to my Dad’s family with whom I feel totally like a changeling or a fifth wheel. My Mum’s family, even if they are a bit overwhelming at times, are interesting people so at least I can listen to their conversations which can often be absorbing, and they see me more for me than just my blindness, though also not fully.

How about you? πŸ™‚

Question of the day (10th September).

Hi guys! πŸ™‚

Here’s another family related question I have for you.

Do you stay in touch with your extended family? If so, how?

My answer:

Not all of them, but my grandparents, most aunts and uncles and some cousins. Our family on both my parents’ sides likes to get together so we see each other at different occasions, like birthdays, name days or such. My social anxiety and other things often make it difficult for me to be around a lot of people for a long time, it’s overwhelming, and, I have to say it, it’s frequently also boring because I don’t really have the close connection between me and my close family, so there’s not much common ground between me and most of them, and sitting at the table for hours and listening to/trying to engage in conversations I don’t really feel a part of or don’t have any real interest in certainly is boring. Eating around many people makes me feel anxious too, and anxiety makes me not hungry at all so it’s stressful if you don’t want to offend someone and eat at least something. And talking to more than like 3 people at once is hard for me, let alone when there are groups of people scattered around the room and each of them talking about their own thing, so I usually feel way more alienated and lonely in such situations than I do when being on my own, and I hate hate hate feeling lonely while being around others, and usually I end up just listening to people and forcing myself to smile all the time. And that’s largely why I often avoid those family gatherings if it’s not necessary for me to be there and if I can avoid them. Also most of us live quite close to each other so we sometimes bump into each other on the street or on similar occasions.

How about you? πŸ™‚

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. πŸ˜€ 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. πŸ˜€ 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! πŸ˜€ 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 πŸ˜€ – 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. Β Β  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.