Rika – “Out Of Order”.

Hey people! πŸ™‚

We had quite a dark and eerie song in this series yesterday, so let’s listen to something lighter today, and a lot more universal-sounding, but also from England. Rika is a British singer of extremely diverse heritage who seems to have gotten a lot of attention from music critics in her home country, and in particular some love from BBC Radio 1. Rika lives in London, however her father is Indian, and her mother is Serbian, from Hungary, I believe, and I’ve read about her saying that both Indian and Serbian music are dear to her heart and that she is influenced by them both.

Question of the day.

Why do you close the bathroom door even when you’re the only one at home?

My answer:

Well, I guess you could say I am mildly paranoid with people. Part of it is probably due to my mental health and personality in general, and part of it is blindness. When I’m home alone, or even alone in my room, and doing something that for whatever reason I wouldn’t like anyone to see me doing, I’ll still take all the meticulous precautions even if I theoretically know I’m alone, because how do I know that for 100%? Or people could come back any minute, even if it’s not very likely, because all sorts of unplanned things happen. In my previous room, which I eventually grew to love very much, I had a hard time getting used to living there, because I’d hear all sorts of sounds, especially weird noises from the radiator, and hearing all those things that I couldn’t quite pinpoint where they were coming from made me think that someone is either in my room, or directly outside the window, or by the door, so I felt like I was being invigilated or whatever. Having this sort of feeling for hours and days on end can really make you freak out. Add sensory anxiety into the mix, part of which for me is a totally irrational feeling like somebody (in this case my brain frenemy known to the outside world as “Ian”, is constantly somewhere around), and you get some pretty amazing experience. πŸ˜€

When Sofi was younger, she had a freakishly annoying and kind of creepy habit of lurking in my room and then trying to scare me, thinking that I wouldn’t know she was there. It rarely worked out, because she’s just not a good lurker, plus I’m too hypervigilant for such things to work out very easily. When I’d have the slightest suspicion of her being there, I’d just do something that would make her laugh and she wouldn’t be able to resist. But the less successful she was at it, the more determined she was, and there were a few times that she actually managed to surprise me and even scare me a fair bit. It was quite difficult to get her to stop this behaviour, and over time it really made me quite suspicious of all sorts of things.

Sometimes people don’t even deliberately want to scare me, but as a kid I had situations where my Mum would be sitting quietly in my room, waiting for me without me knowing, or my Dad sleeping in there as he liked to do, and not knowing this and realising after some time could be a bit frightening.

For most of my life, as you guys probably know, I used to live in a boarding school, so I had roommates and some people around pretty much all the time, I also didn’t have my own room in our first house for the first like 10 years of my childhood and our entire family had like one huge bedroom, so some ways of maintaining some level of privacy get naturally ingrained over time in such situation, I guess.

So yeah, I care about my privacy all the time, whether I know about people being around or not. Even if I know that there’s no one else in the house right now except Misha, I have no guarantee that they won’t come back while I’m pooping or laying in the bathtub, and it would be quite a hassle to have to close the door in the meantime before someone manages to see me or get into the bathroom. πŸ˜€ I guess even if I was 100% sure somehow that there are no people and that no people are going to come back while I’m in the bathroom, I’d still close it just automatically ’cause why not? It’s not a bad habit or anything. It just wouldn’t feel right otherwise. I guess even if I had a place of my own, I’d still stick to my habits, including closing the bathroom while I’m in, ’cause… you just never know. πŸ˜€

What’s your reason? Or maybe you actually don’t do it? πŸ™‚

Richard and Linda Thompson – “Did She Jump or Was She Pushed?”

Hiya people! πŸ™‚

A very interesting song I have for you today. I got first fascinated and hooked on British folk rock I guess some time in 2015 and it was around then that I first became familiar with this couple’s music, both what they have recorded together and separately. My favourite British folk rock artist from the 70’s is unquestionably Sandy Denny (who almost managed to become one of my major faza people but even though it didn’t happen due to Vreeswijk still standing strong in the dominant faza position I still love her music very much) and thus all of the bands that she was a member of. One of those bands and probably one with which she’s most strongly associated was Fairport Convention, through which I’ve also become acquainted with Richard Thompson’s music, as he was one of the founders of the band, as well as the lead guitarist and songwriter for it. I think he’s a really good lyricist and there are a fair few songs by him that I like mostly because of interesting or otherwise captivating lyrics.

This is one of the very first songs by them as a duo that I’ve ever heard, thanks to Last.fm where I’d made my first British folk rock discoveries, and aside from appreciating Linda’s vocals and the arrangement in general, I got intrigued immediately by the lyrics and every time I listened to these lyrics afterwards I kept wondering, did she jump, or was she pushed? πŸ˜€ I don’t like crime novels, detective fiction books, I don’t even read a lot of mystery, I think a lot of it is horribly overrated and just not my thing, but I like lyrics which are like stories. Then later on I was wondering whether “she” was someone specific so I did a bit of research, and no, she’s not, I don’t think so, although in one interview Richard Thompson said that, after writing this, he realised that

“it could be about Sandy Denny”,

or some other people he knew. He didn’t say specifically that it IS, and I doubt he had a clear intention of writing a song about her specifically, also I haven’t heard of her death ever being suspected to be a murder, but, thinking about it in general, the similarity is a bit eerie. Sandy Denny had a lot of mental health issues, a lot of it sounds like she could be bipolar, and one way in which she regularly self-harmed, or, as some people say, tried to get attention, was by throwing herself down from stairs, which was supposed to be something like a party trick. She also abused alcohol and drugs so she experienced a lot of accidental falls due to that as well. One time she hit her head on concrete when falling down a staircase during holidays in Cornwall. She had a lot of headaches afterwards and was prescribed a painkiller which can potentially be fatal in combination with alcohol. In April 1978, she stayed at her friend’s house alone, and was eventually found unconscious at the foot of the stairs. She went into a coma due to brain haemorrhage and died in hospital a few days later. So upon discovering this connection, albeit so dark and eerie, between this song and Sandy, I grew to appreciate it even more.

This song comes from the couple’s last collaborative album before their breakup – “Shoot Out The Lights” – and is the only song on the album and I guess also the only or one of very few songs of the duo to which the lyrics weren’t written solely by Richard but co-written with his then-wife.

Question of the day.

What do you have too much of?

My answer:

Gosh, lots of things! Some off the top of my head: too much anxiety, not right now but in general, and too many various anxieties as well, too much depression, too much Maggie talk (Maggie’s my inner critic), too much freakiness to put it simply. Too many migraines. Too much Ruminating. Too many deja vus lately, I don’t think it’s normal, but I don’t really mind it. Too much Sleep paralysis (I mean yeah, even one episode can feel like too much but I guess I have it more regularly than most people and it seems to last longer than what I typically hear about. Cat fur in my room and on all my clothes ’cause Misha always sleeps on me or in my wardrobe haha. Sometimes downright indecently too much sleep, but I guess it gets balanced in the end because on other nights I get too little and on others yet just about enough. Too much emotional shit that I hold in, either because it smells too bad so I really don’t want people to have to deal with it or because my brain forgot how to poo before it learned properly, usually it’s a bit of both. Too much daydreaming, not that I’m not happy with it but lately I’ve started to wonder if it isn’t a little bit maladaptive after all, still I like it way too much to care even if that’s the case. Too much imagination, which can get in the way when it comes to anxiety but I’d rather have too much than too little. Too much boobs, which can also get in the way, for example with horse riding back when I did it regularly, but, unlike with imagination, I wouldn’t mind having a bit less of them. Too many moles. Too many languages to love and probably to manage to learn in a lifetime. Too much “colour”, as my Mum calls it, for some people to handle, which results in them finding me overwhelming. Too many clothes that I rarely or never wear because they’re for peopling and I do minimum peopling these days, which typically doesn’t require particularly elegant clothing. Mugs, cups and bowls in my room that I haven’t taken down to the kitchen and washed yet as they keep piling up, ’cause I have too little time for such prosaic things. Most people would probably say I have waay too many gem stones, crystals and stuff. Photos of Misha on my phone, especially considering the fact that I’m blind.

You? πŸ™‚

Rhys Lewis – “No Right To Love You”.

Hi people! πŸ™‚

Yesterday we had a female pop singer Rhys from Sweden/US, and today we’re having a song from a male pop singer from the UK with the same first name. Actually when I first came across his music somewhere on Spotify I thought he must be Welsh, because Rhys is originally a Welsh name and very common there, and Lewis is also a very common Welsh surname, but it doesn’t seem like he has any connection to Wales, he is from England. I am not familiar with all of his music or don’t listen to him regularly, but I like this plus a few more songs of his, and this one seems to be popular with some Polish radio station so I guess his music must be quite well-known at least here in Europe.

Question of the day.

If you could eat only one type of ethnic cuisine for the rest of your life, what would it be?

My answer:

Hmmmm… I have a few favourite cuisines, so it’s a little tricky. It’s a bit funny because it’s actually the opposite compared with languages – I love mostly Celtic, a lot of Germanic and some Finnougrian languages but am not particularly in love with cuisines from these areas. – I don’t feel any inclination towards Mediterranean languages, but I really like Mediterranean cuisines, especially Greek. Also Italian, but Greek dishes are even yummier, and I love all those things like feta cheese and olives etc. I also really like a lot of Mexican and Indian dishes because I like things to be hot, and I don’t mind real real hot, to the point where sometimes people are surprised how much spicy food I can eat, πŸ˜€ I guess it’s genetic because my Dad is the same. Our Polish cuisine also has many absolutely delicious dishes, but there are also many that I don’t like at all and I’m not sure I could live my entire life solely on the thoroughly Polish dishes that I like, especially that most of them aren’t extremely healthy, my favourite Silesian dumplings for example, although perhaps if I ate that for every meal every day I’d finally put on some weight so my Mum would be happy. πŸ˜€ I think in general, I’d like Greek cuisine the most, but the big downside is that I guess it isn’t very hot in its nature. I mean sure, I could put chili or Cayenne pepper or kalonji on things but I guess that would no longer be true Greek cuisine, so I’m not sure whether that would be cheating or not. And not having any hot dishes at all would quickly get rather boring and underwhelming. So I think ultimately I’d pick Mexican.

How about you? πŸ™‚

Rhys – “Maybe I Will Learn”.

For today, I chose to share with you something from this young, Swedish-American singer. Rhys has an American father and a Swedish mother, she grew up in Portland in Oregon, and later on she moved to Sweden with her family, where she discovered her passion for all things art – theatre, music and dance. Now she is a well-known singer-songwriter in Sweden, collaborating a lot with the Swedish producer JΓΆrgen Elofsson, who apparently has also produced people like Britney Spears, and other famous Swedish musicians like Felix Sandman, whose song “Lovisa” I think I might’ve shared on here in the past. Many of Rhys’ songs (I guess including this one) have become very popular in Sweden. I like most of her songs, and I think she’s pretty good, and it’s a pity she’s not more recogniseable outside of Sweden, or maybe she is but I don’t know, because I think her music definitely has the potential to do very well also abroad and be liked by lots of people.

Question of the day (17th August).

What should every person do at least once?

My answer:

I’d say learn a language, or at least try to and experience what it feels like. I think it’s a very enriching and interesting experience and it makes me feel sad that a lot of people miss out on it entirely, without even knowing whether they’d like it or not, either because they don’t have any real motivation for it or because they think they don’t have a “talent” for it, whatever that elusive talent thing may be. Also the brain benefits long-term are a huge advantage in my opinion. Not to mention that it can open various doors for you, like to an entirely different culture and mentality, help you meet some interesting people. Most of all though, the reason why I think everyone should try it is that every language you know gives you a different perspective on things, a slightly, or perhaps sometimes not so slightly, I guess depending how different from each other your languages are, way of thinking, since language plays a huge role in how we think about or perceive different things. I’d even go as far as to say that with each language you acquire, be it in early childhood or later on, a different layer or aspect is added to your personality in a way, that is absolutely congruent with the rest of your personality and doesn’t create any conflict or anything, because your languages exist peacefully beside each other and complement each other rather than compete in your brain or exist in some separate, distinct realms, but speaking and/or thinking in more than one language simply makes you more multi-dimensional or something like that, and it lets you think more flexibly and in more ways.

Only there’s a problem, because at the same time I firmly believe that you have to actually, truly like your target language to do it and be successful at it and experience all the benefits of language-learning. If you don’t like it, there’s no point whatsoever. You’re neither going to be good at it (unless you seriously have some brain superpowers or are extremely disciplined and strong-willed) nor are you going to experience anything good from such learning. So while in theory I think we would all benefit from it, I think in practice one would first have to find a language that one finds really appealing and has some true motivation for learning it, because otherwise it just won’t work. I feel so much for all the kids who have to learn a foreign language they don’t like at school, like Sofi says she really doesn’t like English, although with her I’m not sure whether she seriously doesn’t get along with English as a language, or started to dislike it due to school and being unsuccessful at it. I – and it’s not just me –
always say that there’s no such thing as a language talent, unless you’re talking stuff like learning a native accent, but I think for most people who are accused of not having a talent or say so about themselves, the real problem is that they don’t really have much love for the language they’re learning, so it’s hardly surprising they’re not making much progress at it, or if they do, it feels painful and/or slow. Since I like learning languages people usually consider me very talented, but when I was learning German at school, which is a language I merely like and not love the way I do all “my” languages, I was very mediocre at it. Or when my Mum once had a dream to learn Italian (which, like all Romance languages, doesn’t really appeal to me very much in terms of sound and also I guess too many people like it for it to be truly loveable for me), and asked me to help her somehow, I tried to learn the basics, thinking just like my Mum that I’m apparently so good at languages so it’ll be no problem for me to learn and teach her the very basic stuff, except the grammar didn’t really make much sense to me and it all felt extremely arduous so I gave up after like two weeks. πŸ˜€ I feel for people who have to learn a language for work-related purposes but don’t have more of a relationship with it so it only feels stressful and forced and no fun at all. I guess it must be like being forced into an arranged marriage as opposed to being with someone you actually love, or making friends with someone solely because you’re colleagues and it’s useful rather than because you have anything in common and you want it. But there are so many languages in the world that I think if we all just looked around, or rather listened intently, most of us could find at least one language that we’d really fall in love with.

What’s such a thing in your opinion? πŸ™‚

Song of the day (17th August) – Plu – “Geiriau Allweddol” (Keywords).

Hiya people! πŸ™‚

I thought I’d share with you this very dynamic song from Plu. It comes from their self-titled debut album and it’s their original, with Elan’s and Marged’s lyrics, and Gwilym’s music.

Question of the day.

What was the last book you read? Did you enjoy it?

My answer:

Village School by Miss Read. I’d been wanting for the longest time to read something from this author, particularly Miss Clare Remembers and No Holly For Miss Quinn, which are two books in her Fairacre series which inspired Enya (one of my faza people) to compose two pieces of music with the same names. Just listening to those songs I always thought that if they have book equivalents, they must be great, and reading their synopses made me think they were right up my alley, but there was no Polish translation, or at least I couldn’t find any, and it’s fairly recently, some two years ago I guess, that I’ve seriously started reading English-language books of all sorts more regularly and casually, that is not solely for learning the language and new vocabulary. GoodReads must have also figured that it would be right up my alley, because recently I’ve found the first book from this series (the aforementioned Village School) in my recommendations on there, and since now I have access to different places where I can get English books and I read them regularly, I figured I really need to give this series a go now. It took me some time to get into it properly, but I really did enjoy this book and I felt really at home in it by the time I finished. It was really sweet and charming and I absolutely loved her way of describing characters, I love authors whose characters I can actually imagine and who seem life-like, her way of describing things in general is amazing, and I liked her sense of humour.

At more or less the same time I happened to learn that a guy I used to follow quite regularly some years ago, who teaches Swedish online and is a Swede himself and generally seems quite crazy about languages, has written a handbook for Swedish learners, called A Lagom Guide To Swedish. I figured I could really use some good Swedish offline resource that I wouldn’t need to scan or anything, so I bought the ebook right away. And while it’s a handbook, so generally not something you’d just read like from cover to cover, that was precisely what I ended up doing, in just a few sittings. πŸ˜€ I was quite curious how much of the things in this book I would have already known, so I started just skimming through it, but then got positively surprised that I actually know SO much of the stuff he covered in it, and even more surprised and happy whenever I came across something I didn’t know or realise, that I just didn’t want to put it aside. It really boosted my self-esteem in terms of Swedish, because ever since my English has leapt so much forward, I’ve been feeling less confident about my Swedish than I was before, even despite I managed with it quite well in Stockholm and I can get along with people just fine, I always have an impression that my Swedish, compared with my English, feels kind of clunky and it’s not as easy for me to express everything in it as it is in English, even though there was a time when my Swedish was waay better than my English. So I’m really glad I came across that book, even for this one reason. And it’ll definitely still be useful in different situations.

How about you? πŸ™‚

Clannad – “Theme From Harry’s Game”.

I’ve shared quite a lot of Clannad’s music lately, but I guess this is one of their more recognisable pieces, probably the only ones that are better known are “Robin, The Hooded Man” and “In The Lifetime” with Bono.

I’ve never watched the Yorkshire Television series to which this theme was written and recorded, nor read the book on which the series was based, and have very little idea as for what is about, but I really like this song, it being one of the very first pieces of Celtic music that I’ve listened to.

Here are the English lyrics, which I’ve got from

this great site:

 

I will go east and go west

From whence came the moon and the sun

The moon and the sun will go

And the young man with his reputation behind him

 

I will go wherever he came from

The young man with his reputation behind him

Question of the day (15th August).

Do you think anything good will come from the pandemic?

My answer:

I strongly believe so, but a lot of it may be on an individual level rather than more generalised, and the good vs bad outcomes may vary a lot for different people. We can already hear people who see a lot of upsides in it regarding their personal life, or their internal life, development etc. and a lot of people who are seriously struggling with all this and barely managing to stay sane, and I think there are loads of factors involved into it, from whether someone and their family has actually had been personally affected by Covid and how severely, to how people deal with being alone, to how people’s financial situation might have changed over this period, to how their overall health is doing and whether they’re at a very high risk or perhaps have a lot of health anxiety… So whatever I’ll be saying here is definitely not meant to regard all people, just some good outcomes that either I have experienced directly, or that I frequently see happening for people around me.

I like how you can do a lot more stuff online ever since the pandemic has started. In a way I’m surprised though that it seriously needed as much as a pandemic for people to figure out that, for example, you can work online, even in a field where there’s no such tradition really, that you can do school from home (of course there are a lot of cons to it as well but I think a large portion of them is also due to how people have had to adjust to this remote learning in so much rush, without more far-sighted thinking really, at least it’s definitely the case here, and some aspects of it are slightly irrational), that you can do concerts online and lots of other things. I guess once the pandemic is truly over, whenever that may be, a lot of it will come to an end, but I hope that still there will be more things that we will be able to do online if we so choose, than it was before the pandemic. Some people do better working from home, and in larger cities it certainly must help with the traffic. My Dad, who is a tanker driver and delivers fuel across the country, has been saying that one aspect of Covid he really likes is more low-key traffic.

I think it has helped a lot of families to connect more with each other. I’ve heard a lot of people saying that they have discovered some new hobby that they like spending their time doing, that they’d never have time for discovering, let alone learning, otherwise. A lot of people around me say they have benefited from having more free time, either because they’ve got to do things they’d never had time for before, or because they could simply spend some time with themselves and tune into themselves better. Interestingly a lot of people seem to have been reading more books. Some people have learned to cope with aloneness a bit better. For example our Sofi. Being alone is still very far from her preferred state, and she’ll always much prefer when a lot is going on around her, with a lot of people, but I think it’s good when you’re able to accept and manage somehow when things aren’t like this.

It’s also cool that we now get to appreciate our own countries more when it comes to travelling and vacationing. Rather than going to some distant country, locking themselves in a hotel with tourists from your own country and sitting by the pool with a drink, people seem to explore their own countries more here in Europe.

I think for many people, due to the hardships that they have experienced during this time, the pandemic might have also contributed to increased resilience.

As for myself, I haven’t really been affected by Covid very much on a personal level. So far, I feel extremely lucky that it hasn’t affected a lot of my family members, and those who have been affected had mostly mild cases. My gran was an exception, as prior to Covid, which she got shortly before last Christmas, she also had pneumonia, and then before the pneumonia she had bronchitis, so she had already been sick for a long time before she caught Covid, and we were all prepared that, given her very recent infections and her age (she’s over 80) she would most likely die. Thanks to all the dedication of my cousin, who is a doctor, and my gran’s own fierce will to live, she made it through and is perfectly healthy now, so people say she’s indestructible. She really wasn’t sickly or anything before that bronchitis, so I guess her immune system must be very strong given her age. We also haven’t been affected financially, and, except Sofi, no one in my immediate family felt particularly deprived of human contact, probably because we’re already five people living here plus Misha & Jocky, and my Dad and Olek were still working so they got to hang out with people there. I, as you know, have been happy being able to reduce the outside peopling to almost non-existent, and I work at home regardless. Not having to deal with people as much means my social anxiety has reduced quite a noticeable bit, which is nice. And, like I already mentioned, it’s so cool having access to more things from home. For example, last year, when most of the world was in lockdown, I was able to take part in a few concerts of my favourite artists online, in which I certainly wouldn’t be able to take part otherwise, because here people don’t even know they exist so I’d have to travel to other countries, which is tricky even without Covid involved, and even if it wasn’t, being a hermit I would still definitely not be able to relish them quite as much as I could from the comfort of my lil hermitage, with Misha laying next to me, not being distracted by anything from immersing myself in music.

What good things do you see, if any? πŸ™‚

Song of the day (15th August) – Rachel Hair ft. Ron Jappy – “Meras (Grainne Brady’s/The Namesake/Mera’s Delight)”.

Rachel Hair is another new harpist that I’d like to introduce to you, guys, except unlike Silke Aichhorn from the previous Song of the Day post, she is also new-ish to me. She is a Scottish Celtic harpist, and it’s quite clear from her involvement in all things clΓ rsach (Celtic harp in Scottish Gaelic) that she has much love for her instrument. This piece comes from her album on which she collaborates with guitarist Ron Jappy. I really like how her music feels different, yet it’s still very firmly rooted in the Scottish and Celtid tradition. I have no idea about the all the tunes in this set, what inspired them or anything like that, but looking at their credits on Spotify, they are her original compositions, along with Fraser Shaw, who was a Scottish pipe player who passed away in May 2015 due to MS.

Song of the day (14th August – Silke Aichhorn – “La Source, Op.23”.

Hey people! πŸ™‚

I guess I’ve never shared anything from this German classical harpist with you before. This piece was composed specifically for harp (which is a rare thing with classical music) by a harpist, namely Albert Heinrich Zabel (, who was a solo harpist for the Imperial Ballet in San Petersburg.

Question of the day.

What are you thinking about?

My answer:

Okay, so this will be a rathr rambly post, as I also want to fill you in a bit and get some stuff out.

Today in general I’ve been thinking a lot about Sofi as I’m kind of worried about her and so is Mum. You see, Sofi is very slim, and very tall, and she keeps growing, even though she’s already like 180 cm. She also has long bones, long limbs and rather weak joints and muscles. She has done several different sport disciplines, but she hasn’t developed much muscle as a result and was always super quick to get injuries and stuff from it. The last time she tried some new sport (athletics) she ended up with a really painful ankle after just a few days of training, which had to rest for two weeks. People (but especially my Mum, who, also being very tall, I think has some unfulfilled ambitions of her own regarding doing sports as a teenager) have always pushed her to do sports because she’s so tall and fit and in this day and age where kids spend ages glued to their phones it’s the best thing for a kid to do. And Sofi seemed into it herself, but since that athletics episode it looks like she’s had enough and my Mum is no longer pushing her either.

Due to all those injuries, and sometimes without any obvious injuries at all, for many years Sofi’s had all sorts of aches and pains, mostly in her knees. I think everyone here has lost track of how many times she’s had her knees checked by doctors/physios, she also had knee braces several times. But with the exception of times when she had some obvious injury that she could recall herself, everyone has been saying, that it’s just “growing pains” and/or that she needs to put on some weight. I don’t know, I way less than her and I don’t really know what it’s like having joint pain, and I’ve never had anything broken, so I’ve no idea what’s weight to do with it. She’s had several bones broken, but also had her fingers in splints or however this thing is called in English several times, and I don’t know any other person, or at least am unaware of it, who’d ever break their finger, let alone as often and as easily as Sofi. But people have always said it’s nothing abnormal because our Dad has also pretty fragile bones, he’s also similarly built, and he’s had dozens of fractures when he was younger, including once breaking his ankle simply by tripping on a doorstep. I’ve honestly always thought that her pain tolerance must be very low or something because whenever she’d play with someone more dynamically, everything would hurt her and sometimes it seemed quite out of proportion, so that sometimes my Dad made fun of her and asked her to name all the places where she’s hurting, and she’d always have a few, but then as my Mum says if nothing hurts you, you can’t be alive, right?…

Sofi has like a double room, one part of this room is just like a normal room, and then there’s a hole in the wall and you can go in there and it’s like a little cave or something, like a mini room inside of that bigger room. Sofi reallyy likes it and has always spent a lot of time there. And earlier this year she decided to move her bed in there, or rather move the bed out of her main room and put a mattress into that mini room. That mini room, however, didn’t have a window, so one had to be put in there if she was to sleep there. Sofi really liked her new, cosy bedroom and always said she likes to sleep there way more. But then summer came and then a heatwave and it turned out that the little window doesn’t really change much, and even with a fan on her bedroom was always flamin’ hot. So she slept in my room for the time being, as I have AC and blinds here that make life in heat more bearable now, but since it was so hot and clammy we definitely didn’t want to sleep together in one bed. And I certainly didn’t have the space here for Sofi’s huge matress. So she had to make herself a makeshift bed. That was a huge ceremony as she couldn’t make it soft enough while not being too hot. She woke up in the morning complaining of a very painful hip, saying that her bed was still too hard, or maybe it’s her hip that’s too hard and now got bruised. She really had a huge bruise on it and I was quite puzzled that you could get yourself something like this when sleeping on such a load of sheets and blankets, plus Misha’s lamb skin, on the floor which does have a flooring. But then we managed to discover the culprit – on the floor, under all those layers of bedding, there lay Misha’s little iron ball – like the ones in car bearings. – Sounds like Sofi’s the real life Princess on the Pea! πŸ˜€

But the next night she slept at me, she woke up with even worse hip pain, so that it hurt her even when something or someone touched it a bit more firmly. And there was no ball to blame this time round.

The bruise took long to disappear, but it finally did, yet the pain hasn’t until this day, even though it’s been a month. So a couple weeks ago Mum finally took Sofi to the doctor to refer her for an xRay or something. Sofi’s previous paediatrician has recently retired so they visited this doctor for the first time ever. And, as Mum said, that was a very good thing, because she looked at Sofi from a fresh perspective, rather than “Ah, it’s this tall girl who’s always hurting”, and in her opinion it might be something else entirely than growing or thinness that causes Sofi’s constant pain problems, along with fractures and unstoppable growth.

She apparently had a long, thorough look at Sofi and said she thinks Sofi might have something called Marfan syndrome. People with this condition are usually very tall, very thin, have looong fingers, little muscle, fragile bones, often some problems with posture, very flexible joints, are near-sighted and have various heart problems and probably a dozen other things. Everything from what I mentioned except heart problems sounds very much Sofi. And even though Sofi herself doesn’t have heart problems, my Dad has hypertrophic cardiomyopathy, and like I said he has the same kind of body shape. My siblings and i have all been tested whether we have cardiomyopathy too but so far no one of us does, including Sofi. However sometimes when Sofi’s tired or stressed she complains that her heart aches, and sometimes it seems like she can be in a fair bit of pain from it. I would think that’s also abnormal, because I’ve never experienced heart pain, but my Mum says it is normal that people can have heart pain when they’re stressed so we’ve no idea if Sofi’s within the norm or not.

The only other time I heard of Marfan syndrome before was shortly before I was supposed to be checked for that cardiomyopathy thing myself, I could have been 17 or thereabouts. I was about to go ride on my horse and my Mum was explaining to my instructor that I won’t be able to come next week at the same time because I’ll have the cardiologist appointment, and my instructor suddenly got all panicky: “Oh! Why?! What’s going on?! Do you have some heart condition that I don’t know about?” so of course we assured her that no and that I’m just getting tested because of Dad’s illness, and she was all relieved and said she was just worried because she had another girl she worked with who had some sight problems and was slim and “tall like you” and she had Marfan syndrome, and apparently generally horse riding is a no-no when you have this. Fyi, I’m not really tall, I’m only 168 cm and I actually have hypopituitarism which essentially means that I had to get growth hormone injections as a teenager to grow beyond 140 cm, and before I started taking it I was short and plump. My endocrinologist, who was short and plump herself, wanted me to grow more and more and more, “So that you’re tall like your Mum”, but thankfully my Mum put a stop to that before it was too late. But as I started taking it, suddenly everyone, especially at my school, was “Omg you’re so tall!!!” and neither me nor my family could understand why so it always made us laugh, because if I was tall, what sort of giant Olek must have been to them, when he’s over 1,90. πŸ˜€ I suppose it must have been people’s autosuggestion because well, my Mum is tall, my Dad is tall, everyone else from my family who had ever been to my school is tall, plus I suddenly got a lot slimmer on that hormone so I guess slim people look taller than they are. Now hardly anyone still says that to me but my riding instructor happens to be very short, so she always goes on and on and on about how she’d like to have long legs like mine for riding etc. I actually do have very long and thin fingers, long fingers can be useful, but mine aren’t quite as long as Sofi’s, and like her I am also a lot more physically similar to my Dad and his family rather than Mum’s, but thankfully I haven’t got his bones. One time when I was at school, one of the boarding school staff was mentioning something about Britney Spears to my roommates and me and how she can throw her legs behind her head. I never did it, and I’ve never been particularly sporty or anything, but I thought to myself that it can’t be that difficult, and I decided it would be a fun idea to try and find out if I can do it myself, so that was what I did right there, and she was quite amazed that I can do it and freaked out and urged me to stop, saying that I’ll stay like that forever lol, even though it wasn’t much of a problem for me to do it at all so I wondered why so much fuss. πŸ˜€ But apparently not everyone can do it, so I sometimes did it just out of the blue, in favourable circumstances, to see how people would react, especially if I wanted to avert their attention from something else. I’d put my legs behind my head and rock in this position for a while like I was deadly bored and this was as good a thing as any that I could do in such situation, and people would often start yelling “Aaah what’s she doing?!” πŸ˜€ But when I tried my little trick on Dad he wasn’t surprised at all and said he did that too when he was younger. But can no longer do it. Interestingly, neither can Sofi and she never could, even though she’s way better at all things fit than me, so she’s envious, even though she can do all the typical things that people with Marfan’s apparently should be able to do like clenching your fingers in a fist and sticking your thumb out the other side. For me and Olek only a little bit of our thumbs go out, but Sofi can stick out half of her thumb. When I was a child people would also often comment on how I do weird things with my fingers that they wouldn’t be able to do, but about which I didn’t even think. Yet like I said, I’ve never had the aches and pains, nor heart problems, and I have nothing wrong with my eyes as such, only optic nerves, so I guess I only have some similar features. That makes me wonder if Sofi also just has similar features, or is it seriously a full-blown illness, even if she’s never had a surgery or anything like that?

So, going back to that doctor, Sofi got a referral for the hip xRay, but also for genetic testing for this weird thing, which is going to take place in February so she still has ages to wait and in the meantime my Mum is getting really worked up about whether Sofi has this or not. Initially we thought it’s probably a false alarm because despite all these aches and pains, plus Sofi being a bit near-sighted, it’s not like she has a lot of health problems, she has nothing wrong with her heart. Mum read that in the past, where there weren’t so many surgeries that now help people with this condition to lead long and as healthy as possible lives, people with this syndrome would die at about age 30. Well, if we assume Sofi has it, then my Dad has it even more definitely, and he only needed one surgery which has dealt with the problem quite well, and he doesn’t have quite so many problems as it seems people with Marfan’s typically have. But then I guess it’s a spectrum and people may have more severe or milder symptoms, but it’s still the same condition. I’m just not sure what to think. I guess I could not think about it at all until we know, but my brain doesn’t like to not think, so I hardly have a real choice.

At the beginning, as much as Mum was quite depressed and anxious about the whole thing, Sofi seemed quite happy. Soon after Mum told me the news and we talked it through, Sofi came to me all happy go-lucky and said: “Bibiel, guess what? The doctor said I have morphine.” She couldn’t remember what that thing was called, but as soon as she said “morphine” she knew it wasn’t that, and she knows what morphine is, so we both were laughing like crazy. πŸ˜€ So I asked her what this morphine is all about, as I didn’t want to show that I already knew about it from Mum, I wanted to know how she understood it and how she felt about it. And she said that it’s something that makes you tall and thin and makes your joints and bones and muscles hurt like hers and makes your fingers real long (whereupon she proudly presented to me how her fingers actually meet the criteria and how it’s so cool), and sometimes it screws your heart up. So I asked her what she thinks about it and she said it’s actually quite cool, because she doesn’t have any heart problems, and she no longer wants to do sports anyway, and this will be a good way to respond to people who make stupid comments about how tall she is. “Yeah, it’s ’cause I have morphine”. πŸ˜€ And it’s a fun random fact to tell people about yourself. Sofi has fairly recently started her YouTube channel and has wanted to do a facts about me video so I could see how such a super weird fact would be valuable.

But her hip kept hurting, and when she had an xRay it didn’t reveal anything at all. The xRay lady was also apparently real nasty to her, pressing her hip really hard, I guess not intentionally, and when Sofi winced she asked: “Does it really hurt you so much?” No, for flip’s sake, why would you think so? I just like getting xRays y’know? I had one half a year ago but it’s so much fun, and I was kind of bored so Mum thought we’d go and have another one. That wasn’t what Sofi told her, of course, just my brain’s allergic reaction to bullshit.

But a few days after the xRay, Sofi’s hip has started to hurt even more, so that she even finds it difficult to fall and stay asleep, and even if she herself touches the hip lightly it hurts like crazy. Even the seatbelt hurts. So when it started to hurt more she once came to me and, with a lot more concern than before asked: “Bibiel, what do you think, do I have this morphine or not?” “How would I know such a thing?” “I know, but what’s your instinct?” I said that my instinct is (or was, at the time) that she doesn’t have it, because she’d have way more problems with her health, and so would Dad. It’s honestly a difficult thing to have any gut feelings about since I barely have a clue about things like that. Last night Sofi’s hip hurt particularly badly because she bumped it accidentally with her elbow, and she couldn’t fall asleep. And I asked her if she wasn’t prescribed any pain killers for it at all. Sofi said no, because there’s nothing on the xRay. Holy shit, what sort of logic is that? I don’t know, obviously I’m not a doctor, but if I were, my dr Bibiel logic would be, if a patient has a lot of pain and she can’t sleep, especially if she’s a kid, and I can’t figure out what’s causing the pain, and the xRay doesn’t show anything, I’d at least try to relieve the pain if I’m absolutely sure that nothing else can be done to actually deal with the cause of the pain. Besides, yes Sofi will have that genetic testing in February, but couldn’t they keep looking for a direct source of the pain regardless? I don’t know, ultrasounds, whatever is used in such cases? I shared my reflections with Mum today morning, and she’s going to get Sofi to have an ultrasound soon, but we both think that this should have come from the doctor. We don’t even know if ultrasound is indeed the next thing that Sofi should have, it was just the first thought that popped into my head so that’s the direction in which Mum’s going first.

But what worries Mum even more than Sofi’s hip pain is her growth. My Mum is very much into hormones, as she’s going through menopause herself and has been trying to figure it all out and help herself with her very obnoxious symptoms. She uses natural progesterone and estrogen creams, tries to eat healthily and uses other things that help with hormonal balance I don’t even know what they are, reads books about hormones in females and generally educates herself in this regard all the time. And, since she already has some experience with me when it comes to hormones and growth/puberty, she started wondering right after Sofi got this potential diagnosis, whether/how Marfan syndrome may affect hormones, since people with this thing are so tall. She found that, while unlike what she thought Marfan syndrome isn’t directly linked to hormones, apparently what endocrinologists do with girls with this syndrome when they keep growing and growing is they give them estrogen to trigger menstruation, and that apparently stops further growth. I didn’t even know there’s such a relationship between menstruation and growth and that as soon as the former starts the latter is over. The way I put it is probably very simplified and maybe even not entirely correct but that’s just the gist of it. Apparently girls with Marfan’s also tend to start their periods later than average, which would be true for Sofi, who is 14 now and still hasn’t got it. Since Sofi is 180 cm now, Mum, who is exactly the same height and not particularly loving it, really doesn’t want her to grow even more, because it’s so impractical, so she gave Sofi the estrogen cream and instructed her how she should use and dose it. I’m not sure whether it’s a good thing the way she does it, just based on her own research. I mean, she’s surely very knowledgeable by now, but her knowledge is mostly limited to how hormones work in middle-aged women and it would suck if she screwed up something with Sofi’s hormones really bad just because she no longer wants her to grow.

Mum’s getting really neurotic about it all, which I can’t really blame her for. And today she went to do her nails, and spilled out some of her worries at the beautician, who was oh so helpful. I mean, I’m sure she meant very well, but she only worked my Mum up even more. My Mum explained to her how she’s worried that Sofi still hasn’t gotten her period, and keeps growing, and that Mum doesn’t want her to become a giraffe, and is worried that she still isn’t menstruating for so long. And the beautician said that she also didn’t menstruate for very long, so her mum took her to the gynaecologist and it turned out she had polycystic ovaries, so she’d advise my Mum to go get Sofi checked out as well. Uhhh… Mum came home and spent an hour flicking through her books, trying to find stuff about polycystic ovaries, and since all her books concern mostly older women, it seems like a lot of what she’s read is quite depressing.

I highly doubt (for what gut feelings are worth) that Sofi has this particular thing. I don’t think I got my period earlier than Sofi. I’m probably not the best example since according to my endocrinologist it was not certain if I’d ever have it, but still, I guess 14 is too early an age to wail over lack of period. But since I usually pick up people’s moods super quick, I’m feeling worried too. So that’s why I’m thinking about it.

How about you? πŸ™‚

Rachael McShane & The Cartographers – “The Molecatcher”.

Hey people! πŸ™‚

Today I have for you also a folk song, but an English one this time around. This cheeky tune is included in the Roud folk song index and has been known to folk song collectors all over Britain for a long time, but I’ve read that it’s been particularly popular in Essex, and Tawney Common where the lyrics sung by Rachael McShane are set is somewhere there. Rachael McShane herself is also well-known on the British folk music scene as a former member of the group Bellow Head.

Question of the day.

How are you feeling?

My answer:

Very decent really. I got some good sleep, which is much appreciated because lately my brain thinks that when I’m going to sleep, it’s the best time for doing some deep, intense thinking, and then of course it’s difficult to fall asleep. The good thing is that I’m not having a particularly stressful time right now so there’s nothing stressful or scary to ruminate about, so I mostly think about neutral or really nice things, but still, when you’re trying to sleep and are actually tired, such very intense, all-consuming thinking sessions can get slightly exhausting. πŸ˜€ But yeah, like I said today I got real good sleep, and am having quite a lot of energy and generally feeling fairly positive about things. I’m gonna do some Welsh learning in a while so that’ll probably further boost my mood. I was slightly headachey in the morning so thought I’m going to end up with a migraine or something, but it went away completely.

How about you? πŸ™‚

Gjallarhorn – “Herr Olof” (Master Olof) & Nordman – “Herr Olof Och Havsfrun” (Master Olof And The Mermaid).

Hiya people! πŸ™‚

So recently I’ve shared the music of quite a few Nordic folk artists with you, and I thought we’d stay in this Nordic folk climate for a while yet. The song I want to share with you is one of the first Swedish folk songs that I’ve heard of. Herr Olof (or master/sir Olof in English, Gjallarhorn translate it as master so we’ll stick to it here) is a young knight, who one day decided to visit the court or homestead of a mermaid. She greets him very happily, stating that she’s awaited him for fifteen years, and then proceeds to ask him all sorts of nosy questions – where he was born, where his family live, where are his fields and meadows etc. etc. but most importantly “Where do you have your fiancee, with whom you want to live and die?” Herr Olof has one answer to all these questions, that he has all these things and people at the king’s court. Then the mermaid finally lets him in and gives him “the clearest wine” to drink, after which herr Olof actually changes his mind and decides that all he has is now at the mermaid’s court, and that she is the one with whom he wants to live and die.

Usually, if I share two or more versions of the same song with you in one post, it’s because I can’t decide which one I like more. It’s not the case here though. I’m very partial to Gjallarhorn’s version, because I love Gjallarhorn in general, but I also do like Nordman’s version because this is the first version of this song that I’ve ever heard and I thought it would be interesting for people to compare perhaps. This is also one of very few songs by Nordman that I actually like, because their way of mixing folk and pop together just doesn’t speak to me. Of course I’ve nothing against mixing folk and pop, I often love it, but I simply don’t like the way they specifically do it with most of their music, it feels a bit cheesy.

When it comes to Gjallarhorn, it is thanks to them that I developed an interest in Finland Swedish, or at least the amazingly cute accent that Finns have when speaking Swedish. The band’s members are all Swedish-speaking Finns, but I didn’t know it when I first came across the music, so I was very amazed hearing the vocalist’s accent, and then I figured out why she sounds the way she does and that she’s Finnish, I decided to have a deeper look at finlandssvenska and totally sank. It’s just such a cute accent! The name Gjallarhorn means hollering horn in Old Norse, and refers to the horn belonging to Heimdal – the watchman of the Norse gods – who, according to the Norse people’s beliefs, was to blow this horn during Ragnarok, so loud that the whole world would hear it.

Gjallarhorn – “Herr Olof”:

Nordman: “Herr Olof Och Havsfrun”:

Question of the day.

What motivates you to get out of bed every day?

My answer:

Usually it’s Misha, at least when he happens to sleep with me. I always close the door for the night so that if I’m up when everyone else is asleep I don’t wake up anyone, and if I’m still asleep when people are waking up, they don’t wake me up. Plus it just seems very privacy-invading sleeping with your door open. So whether Misha is or isn’t here, I always close it, which means that when he wants to go out in the morning, I must let him out. People are often surprised how I find that tolerable to hear a moaning cat first thing in the morning and have to get up even when I’m the sleepiest just to let him out, and that it’s like having a baby. I don’t really care, it’s nice to see Misha first thing in the morning and cuddle him for a while, and because I’m so used to doing it by now, sometimes I guess I do it without even waking up. πŸ˜€ Also if I need it, I can go back to sleep right away. Typically Misha will be back at my door for his morning nap, waiting to be let in, and then he’ll also need a snack.

If Misha’s not in the mood for sleeping with me, I simply rely on things I like that I have to do every day. Like my language learning or blogging or replying to my penfriends etc. It usually works to get me out of bed. Another motivator which works really well is that it’s not really something my brain likes to keep laying in bed for too long without actually sleeping, because then at some point before I even realise it, even if I had the best night’s sleep, I’ll start feeling extremely and quite unusually sleepy again, or more like tired, in a way that is really difficult to overcome, while at the same time the still awake part of me is getting all panicky out of the blue, in a totally primal, irrational way, and then if I won’t manage to get out of this state I end up having sleep paralysis within minutes. And then it’s all the more difficult to get out of bed, when I’m finally out of it, because it makes me really exhausted, floaty and foggy-brained, plus my anxiety’s usually through the roof at the same time. I don’t even have to lay in bed awake for very long, sometimes all it takes is being awake for a bit longer between sleeps, like when you wake up at night and then it takes you a while to go back to sleep. So I guess ideally if I wake up at night and am not asleep again within like 15 minutes I should get up, even if I’m still feeling like I could use more sleep.

I feel really grateful that even though my dysthymia plus circadian rhythm issues regularly make getting out of bed difficult, it doesn’t often happen to me that I’d be so depressed or out of energy that I totally can’t do it for hours or at all. I guess what also motivates me in a way to get going is that people around me, while mostly supportive, don’t really get the nuances of what it feels like when you have depression or stuff like that, and it’s difficult for people to make the connection between being depressed and having no energy, so I feel like I should get out of bed simply because otherwise people will think I’m lazy or something. One of the signs by which I can tell that I’m properly out of brainergy is that I don’t care about such details as whether people will think I’m lazy or not. I think it’s helpful to always have some sort of an idea, maybe not a whole fully-fledged plan but a reasonably clear idea, of what you’re going to be doing the next day, and especially regarding things that you generally like doing. Since I have dysthymia and not major depression, I’m not normally anhedonic (unable to feel pleasure out of doing normally pleasurable things), which makes finding things I like doing easy.

You? πŸ™‚