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™‚

Question of the day.

Have you ever shared a toothbrush or a stick of deodourant with anyone?

My answer:

We do share a toothbrush with Sofi, and a deodourant with my whole family all the time… Ewww! Well, actually it’s not quite so gross. πŸ˜€ It’s not gross because our toothbrush is electric, so each of us simply has her own head for it. I guess that’s a lot more economical than having two toothbrushes for two people. And as for the deodourant, well, it’s not a stick, so it doesn’t really match this question’s criteria, but still, it’s a deodourant that my Mum makes for all of us. My Mum is a health, lifestyle and wellness geek as y’all know, and part of what it means is that ever since she’s embraced this new identity of hers, she’s started doing some cosmetics of her own. Not a lot and nothing fancy, because she’s not the kind of person who’d need a lot of cosmetics these days, but she just doesn’t believe in most of the mainstream ones that they’re working at all and she says that if they do it’s a placebo. She makes her own deodourant, toothpaste, sometimes soap, but rather occasionally because she does have a soap that she likes and considers good and that we all are also happy to use, and she also makes some other things for facial care that are easy enough to make. So we have a huge container of Mum’s deodourant in the bathroom. It’s made of baking soda and coconut oil, and a drop of some essential oil for fragrance. This doesn’t block your sweat glands like typical deodourants do, but simply totally neutralises the smell.

How about you? πŸ™‚

Question of the day.

What was the last health or beauty product you purchased?

My answer:

There might have been something more recent that I just can’t recall, but the most recent thing that I can think of was for Misha’s health actually, that is deworming tablets. His deworming was already overdue, and although getting Misha to swallow a pill is a nightmare for both him and the person involved, it’s still better and more short-term stress than getting him to the vet for an injection.

You? πŸ™‚

Question of the day.

What are you thinking about?

My answer:

That after writing this post, I’m gonna go sleepy sleep. I’ve been feeling quite dreadful today because finally, after like half a year, Jack the Ripper, aka Jack the Butcher has come to visit me yesterday, and he’s been catching up on all the lost time. Although from what my gynaecologist has told me in the past it’s not overly concerning yet, especially if you have some hormonal problems to begin with like I do with pituitary not to have your period for about half a year, I was beginning to get a bit concerned very recently and Jack must have read my thoughts and came yesterday showing his full potential. I’ve had a terrible headache all night and most of the day today and am feeling achy and lousy overall, and I’ve actually slept already today, which is not like me because I normally don’t nap during the day and avoid it for all costs, but I still feel like bed is the best place to be in right now. But hey, at least I didn’t seem to get any bad PMS symptoms, and am feeling okay emotionally and mentally today, that’s a big plus! Perhaps tomorrow will be the other way around. But I better not say it if Jack can seriously read my thoughts. Well I was a bit mood-swingy lately but not so that it would be a problem or that I’d even noticed it could be PMS. So yeah… 😴

Oh but speaking about all things hormones, have I told you guys about my thyroid ultrasound? I mean the results? Well I don’t remember now so if I did, I’ll just tell you again. As I wrote before it I was a little worried that something may be wrong, but the ultrasound doctor said it was totally normal, so I’m happy. Even the socialising wasn’t too bad, somehow I managed to get along with him without much difficulty, perhaps because his daughter apparently is also called Emilia, lol, and it went more smoothly than it always did in the past back when I was going to Medical Academy for all sorts of pituitary and thyroid testing when I was a minor, the ultrasound there always took ages and something about it was super stressful so I was very surprised. As always, defensive pessimism paid off.

Okay, your turn now, my thinking brain is shutting down so I have nothing more to say on the topic. πŸ˜€

Question of the day.

Hi people! πŸ™‚

What is something that is makiing you feel bad?

My answer:

One thing that makes me feel perhaps not like super bad, but a little anxious and uncomfortable, is that I have a doctor appointment tomorrow to have a thyroid ultrasound done. I’m not particularly enthusiastic about having to interact with people there so while it’s not a super challenging or unusual situation that would paralyse me, I also have my Mum to help out as my spokesperson, it’s just a bit uncomfortable and it’s been in the back of my brain all the time for a while. As you may know, I’d been treated for hypothyroidism since I was a very little child, I was taking thyroid hormone and growth hormone. At some point I went off the thyroid hormone though, which most people have to take throughout their entire life, as I seemed not to have neither any specific symptoms anymore when off it, nor any special improvement in anything while taking it. Probably the only symptom of hypothyroidism I can strongly relate to these days is low mood, for which I have a separate diagnosis these days though and no doctor has ever said that I have the mood difficulties that I do because of hypothyroidism, and low energy which is a common thing in womenn on my Mum’s side of the family because of low blood pressure, and my Mum has the same thing. Anyway, recently I had some blood tests and it turned out I still do have my TSH (thyroid stimulating hormone) levels elevated, so my GP thought she’d refer me for the ultrasound, just in case there’s something else going on. I’ve never had anything particularly wrong going on on ultrasounds as far as I know, except for my thyroid being a little bit too small, but it’s always better to check it out once in a while I guess, especially that I didn’t have it in like over 5 years. So I am also a little bit stressed in case something may have changed, even though rationally I know it’s not super likely.

Also the Dad thing is still affecting me a bit.

My Mood has been very much up and down lately, but I don’t think there are any more clear, external reasons right now for the downs, or can’t think of any, so it’s probably just mostly my brain.

How about you? πŸ™‚

My little gratitude list.

I’ve just thought I’ll do one so here goes:

A very warm weather in the morning. I woke up quite early, ate breakfast and then sat in the living room with Mum enjoying our drinks, with the balcony door open, and the sun was shining and it felt almost hot there, but not too hot. It felt very nice. In the afternoon it started to rain heavily and was stormy though.

Having a nice, low key day. Which I really appreciate today, as I’ve been having a headache all day long, so don’t feel particularly energised and am happy I don’t have to go out anywhere or do anything very important or stressful or whatever. It is not the kind of headache that would put me to bed and that I’d be completely non functional, but still it’s quite disturbing and painkiller doesn’t seem to work, but it doesn’t feel strong enough for me to take the stronger one for more migraine-ish stuff. I’ve had this kind of headaches prety often in the last couples of week. Oh but I’m digressing.

All my friends – penfriends, in the blogosphere, etc. all of them. I’m really grateful for having so many great people around me online!

A long, hot shower I had a while ago. Sometimes a long, warm bath or shower helps me with a headache or a migraine, which today didn’t happen, but it was cool anyway. It’s getting warmer, so my skin is not as dry, so I feel more daring with soaking in the water, no having to regret it later because of feeling dry and itchy.

Yummy food I’ve had today, and a lot of veggies. For breakfast I had sandwiches with my Mum’s baked pork chop, I guess that’s how you’d call it, and lettuce, parsley, spinach, cress, tomatoes, radishes and chive. We have loads of vegetables right now, thanks to my Dad’s gardening hobby, which my Mum looks down upon and laughs at, but I think it’s really good for him that he has some constructive hobby, and also that it’s so useful, as it’s nice to have your own vegetables. For lunch we had chicken soup with noodles, and also a lot of parsley – we can’t imagine a chicken soup without parsley, not a good one at least. And for supper my Dad made his artsy sandwiches especially for me. πŸ˜€ My Dad’s sandwiches are very special ones, because he always puts so much effort into them, making sandwiches for himself or anyone else is a bit like a ritual for him I guess, or looks so. A characteristic of them is that they are full of everything, especially when it comes to spices, his view is that the more you put on your sandwich, or to any dish actually, the better it is. I don’t always agree with this view but I really liked his sandwiches today, and it was cool that he made them especially for me cus he needed company while eating supper and everyone else were either sleeping or immersed in the TV/smartphone/observing the fish tank. πŸ˜€

Misha. I’m grateful for Misha every day. Recently I tried to think back what it was like back when I didn’t have Misha, or didn’t even know him, which wasn’t so long ago after all, but it was kind of difficult to even imagine, Misha feels like an essential part of my life, and I call him my personal bundle of happiness. He wasn’t particularly convinced when I asked him to go sleep with me last night, but instead he spent a good part of the day sleeping in my room during the day, first in the morning, and then in the afternoon, when I was doing my Welsh, and then watching the rain falling outside at my window. Nowadays, when I learn Welsh, it’s mostly listening, and today I had my 2,5 hours weekly marathon, so then I don’t do anything else but listen and read. So, as I felt exhausted because of the headache, I just laid beside him and we held each other’s upper limbs for moral support – I suppose the moral support was mostly for me as I was really frustrated with myself ’cause I still can’t make sense of what I’m hearing, and kept distracting. Perhaps doing the Welsh marathon with a headache wasn’t the best idea in the first place, but I doubt it’d be much different otherwise, and I had enough free time on my hands so I knew I would regret it if I wouldn’t use it when I had it ’cause 2,5 hours without external distractions doesn’t happen often to most of us.

My Plextalk, and that it is so small so I can actually lie on the bed with it and plug the headphones in and listen. And generally, I’m grateful for it because it saves me from boredom, silence anxiety as I call it, and so many other things. I’m also grateful for my laptop as otherwise I wouldn’t be able to do most of the things I do, and for my Braille-Sense, ’cause even though it is falling apart I’m still using it a lot and life would be harder without it.

That I slept quite well last night. Not very well, because I have blocked nose since a few days because of allergy to something I have yet to find out what it is, but reasonably well. And I am also grateful that it’s already evening so I can soon go to bed and hopefully will wake up tomorrow and will feel better physically.

That I feel pretty much on the baseline emotionally and moodwise. That’s of course my baseline, not like for most people haha, but I am glad it is like this anyway.

Blogging, writing, journaling. As I’ve said multiple times, it always helps me with expressing myself so is always very therapeutical, and just pleasant.

Reading a lot of interesting things lately.

That I am able to learn my languages, and, even if there is such a bit of a low like with my Welsh lately, i am mostly really good at it, and am lucky not to have to put as much effort into it as many other people. I’m also very grateful that I could do my Welsh learning today, and hopeful that I’ll soon see some progress.

What are things you are grateful for? πŸ™‚

Question of the day.

Where do you need to restore balance?

My answer:

In the amount of snacks I give Misha. Usually I give them to him to bribe him, like to stay with me or something, sometimes if there is a more chaotic day it happens that he gets a snack instead of a regular meal, or a couple of snacks actually. Also it is all very chaotic generally because he is normally fed in the kitchen – like gets his usual meals, some human treats and snacks – but then there is Zofijka and me and we also have our own snacks for him, so it looks like that whenever someone comes into the kitchen and prepares/eats something, and Misha is around, they feed him, not consulting it with anyone and not caring whether maybe he just ate something five minutes ago. He’ll come to either me or Zofijka and will usually get a snack too, ’cause oh well you know he’s so cute.

Our luck is that Misha isn’t your average voracious cat who will eat and eat and eat until it literally bursts, he’s actually often very fussy and has better things to do than eating, and he knows that there is food all the time, also his metabolism is very fast and he’s incredibly slim, almost skin and bones. Well not like emaciated or something but yeah, very slim, you can easily feel all his bones and he’s actually small. So physically it doesn’t seem to affect him, at least so far, but I think that – although of course he does like his food – it still isn’t healthy for him both physically and emotionally, because he also seems to like when things are consistent, or that’s how it looks like to me anyway. And boy I wouldn’t like him to become a stereotypical, obese, lazy cat, that isn’t interested in anything else other than his food.

If you want to change the world, you need to start from yourself, so a couple days ago I decided to cut off the amounts of snacks and other food I give Misha and be more careful of that, and also talked to Zofijka about this. My Mum agrees with me, but, you know how it is, until everyone gets used to something, some time must pass, so yeah, for now at least I try to not be too generous for Misha hahaha.

He is a cute child, he amazes me every day how just good-natured and clever he is, plus he seems to become more and more beautiful every hour, and he deserves all the best in the world, but I am not sure if he deserves being overfed, I want him to be the longest living cat in the world. πŸ˜€

How about you?

Question of the day.

What do you hope for in the next few months?

My answer:

The first thing that comes to my mind is for Misha to settle down, I mean I’d like him to feel comfortable now that Sasha is with us. He is getting better and better, but I can still feel he’s very insecure at times.

I also hope that I’ll be able to catch up quickly on all that time I was not able to ride. By the way, haven’t updated you guys on that, I’m going to the stud tomorrow and ride for half an hour. Usually it’s a full hour, but this time, because I’m still having this yucky skin infection, it’s gonna be half an hour, I don’t want to irritate it more, but I also don’t want to wait God knows how much longer until it heals. Oh yes and I hope my leg heals quickly, not for months as always.

I hope for doing some more visible progress in therapy. I can see that at this point there is something going on but so far it’s very small progress and I hope that with time I’ll go a bit further. And I hope I’ll get funding for all the tech stuff I need, or at least for a new Braille-Sense, my old one, as you may remember, is Zofijka’s age, so quite a senior as for a tech device, and is driving me crazy more and more with each day. So I also hope that in case I won’t get the funding, I’ll have the patience to get me through it all.

What are your hopes? πŸ™‚

I am just so darn lucky! πŸ˜ 

Guess what? I’ve got the skin infectionn on my leg, again. I was writing about it early this year, that I get very weird skin infections, or whatever it is, on my calves and I can’t, no one can’t, figure out the reason. I’ve been to three dermatologists and two surgeons with it and everyone is kinda clueless. I thought it’s maybe allergy, but I can’tfigure out what could I be allergic to that I don’t know of, and I don’t apply any chemicals on my skin nowadays consciously, most of the cosmetics I use are homemade by our lifestyle guru – my Mum, the rest are either al natural or hypoallergic, if I need to use anything else which is extremely rarely. Hell my Mum even got me tested for diabetes because we were worried it’s healing for so long, but I don’t have it. I’ve been told I once had staphylococcus in it, but not much more, and I’ve got a lot of meds for it, which worked sometimes more, sometimes less, but always very slowly.
It doesn’t look too bad because it’s always small and I’ve never had any complications, but as I said it heals for ages, like a few months, and I have scars after that shit, I have it twice a year, so if it doesn’t stop, I wonder how my legs will look in ten years time. It’s also pretty painful most of the time and makes long walking or standing a bit hard.
I’ve felt my leg hurting since last night but I didn’t figure out it can be that until I saw it bleeding when I was going to shower a few hours ago. I was mad.
I wouldn’t be whining at all, after all I kinda got used to it and many people, including me have to deal with worse and more important things, but this time it drives me crazy for a reason.
It means that, AGAIN, I won’t be able to ride for God knows how long. Some part of me is starting to wonder whether I actually should still insist on riding if there have been so many things speaking against it over the years. Maybe it would be wiser to give it up, or maybe there’s something else that God has planned for me, but I can’t accept it, and won’t. Not yet at least. I guess I just have to wait some more. Maybe then I’ll get some luck with riding finally. But OMG I’m so angry with this!

Hoping hearts.

Tomorrow my Mum has an appointment with a coeliad disease specialist in the afternoon, and in the morning, she will have some blood tests done, mainly to see if she has enough of iron, feritin, or however it is called, and how her thyroid hormones’ levels are, because she’s constantly very tired and having menopause so it was actually what I suggested her to do because so many women in her age seem to start to have all those Hashimotos, hypothyroidisms and stuff.

But what I’m mostly concerned about is that coeliac disease thing. She has had isssues with gluten and with food in general for a long time now, feeling unwell after pretty much anything she eats. It’s really concerning for me, and I know for her too, even though she pretends to take it easy. She had gastroscopy and colonoscopy done and thankfully there’s no cancer or other alike shit involved, I was freaking out it could be that. But still, the perspective of my Mum having coeliac disease quite scares me. I just hope it could be just something milder, something easier to treat, I’ve heard so many awful stuff about coeliac disease. Maybe it’s just some allergy or something. But even if she doesn’t eat any gluten she still feels tired and very often feels bloated.

and I know she’s stressed too, and can’t wait to know what’s up.

So we both, with more or less desperately hoping hearts, are awaiting for the results, and I, despite identifying myself strongly as a defensive pessimist, still am praying for the best possible outcome for her.

 

If We Were Having Coffee… #WeekendCoffeeShare

Weekend Coffee Share at Eclectic Alli’s

So it’s another weekend and let’s have some coffee guys, although I’d rather suggest ice coffee, it’s incredibly hot here, 30 degrees C. or something like this. πŸ™‚

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

If we were having coffee, I’d tell you I am really looking forward to some cooler temps. I’m not the best at tolerating the heat so not feeling the best physically this week. I’ve suspended the Tibetan exercises until it will cool down and did them only on Monday. My room is the hottest in the whole house, it always warms up in the afternoon, luckily I have an air conditioner now and it’s on from like 3 PM until the morning. I am glad the weather is nice but a bit exhausted with the temps above 30 C in the end of May and the beginning of June. What pisses me off is that always when it’s so hot my blood pressure seems to go even more down than it’s normally and so my energy is almost non existent. Misha’s sleeping most of the time and my Mum who also has constantly low blood pressure and low tolerance to the heat feels crappy too. We’d be really glad to have a little storm and some rain.

If we were having coffee I would tell you I had an awful migraine on Wednesday. I think it was because of the heat. I spent almost the whole day in Mum’s room which seems to be the coldest one and either sleeping or just existing. I actually didn’t think it would be a full migraine, I just felt some little headache in the morning, but it got much stronger very quickly. What I hate about migraines other than just having it and being in pain and stuff is that usually when I get it I also have some scary dreams. And this time wasn’t an exception, although luckily I didn’t slip into the sleep paralysis and those very very dark dreams, they were just exhausting and weird and definitely not good. I felt better in the afternoon though and was completely free of pain in the evening. I decided to do some creative stuff, despite my brain melting successively and worked on one of Vreeswijk’s poems, which I started translating to Polish months ago. It is so frustrating, so far I have only a few of them done, I started a couple of them already but can’t finish any. I haven’t finished ANYTHING this year, guess I was too low most of the time even when I had some more time for it hypothetically. It drives me crazy that it seems that when I translate his poems, I can get through some part smoothly and then I always get stuck somewhere. But with this one – “Balladen Om Bonden Och DjΓ€vulen” (The Ballad About The Peasant And The Devil) I’m very near the end now. Despite I find it rather hard – masculine rhymes, which are so common in Swedish, but not as much in Polish, but since this poem is also his song I thought I should leave the original structure of verses, and his very unique style which was kinda hard for me to transfer into Polish in case of this poem, but at least no word games this time. This is a funny, folkloristic ballad about the peasant who is visited by the devil and he complains to the devil that he has gotten old and unappealing, while his wife is young and beautiful and he’s jealous of young men’s youth and he asks the devil to help him keep his wife by his side, so that she’d love and desire only him and the devil helps him, supposedly. I really miss those times when I translated more of him, and was very productive with doing it. So I really really hope that I’ll be able to finish this one soon and the final effect won’t be too rubbish. Then I’d like start to work with his “Veronica”, although this one is a real masterpiece so I’m not sure how it’ll go and I think it would take me a lot of time. I’m a little anxious about it, because what if I foozle it completely… but at the same time I really want to try because I know no one else would do it in Polish, and I’m curious whether I can manage it. Or if not “Veronica” I might go with a short but powerful poem called “HemstΓ€llan” which is about death and really speaks to me, but looks lke there is a word in it that is hardly translatable into Polish. I think I could go much further with translating his works if I wouldn’t be so intimidated that I may fuck it up or that translating his poems to Polish is pointless and that my dream just can’t come true. But I still am, maybe because I can’t judge my translations objectively. I tried to show them to my Swedish teacher back when he was teachingΒ  me but I feel like he can’t be objective too, well I was his best student and he wasn’t really used to having students translating Swedish poetry, so any time I showed something to him he was shocked and wondered how I do it which I can’t explain because it’s usually very spontaneously. And I feel like he never saw any flaws to my translations, other than some very glaring ones, which was always a bit confusing for me. There was my friend Jacek – the one with whom we made up the novel about Ragnarok and the viking gods – and he spoke Swedish, but sadly I can no longer ask him for any advices… Although back then he was very constructive whenever I showed him something I’ve translated. But I actually don’t know whether it’s really the problem that no one can be objective or just my AVPD goes in the way and makes me think that there’s no way at all I can do it right, which, I suppose, might also be possible. So anyway guys, please wish me luck with that ballad, it’s really short, but I’ve been dilly-dallying with it for so long that now when I finally got a bit forward I’d love to get through it and do it well.

On Thursday morning I had a blood test planned to check how my thyroid hormones are doing and had to get up at 6:30 to have it done, but because I slept so much during the day because of the migraine, I had a sleepless night, then I finally fell asleep at 5 AM so Mum decided I shouldn’t go anywhere and be a Zombie and she rescheduled it. after the blood test we planned to go to the church because it was Corpus Christi holiday and we wanted to do it possibly early because of the heat, but finally they went without me and I just listened to the Mass in the radio later on. Then they went out again to take part in the procession, but me and Mum stayed home because it was really hot and we didn’t want to risk fainting in public, that would be scary. πŸ˜€ In the evening some of Dad’s family came and we were barbecuing, although I wasn’t with them for a long time because it was just so boring so I helped Mum out in the kitchen a bit.

Yesterday I had an awful morning. I woke up around 9, but didn’t feel like getting up, didn’t have anything necessary to do and not much energy and there was no one else at home except my Mum and Misha who were also napping, so I stayed in bed and I did one challenge of my Welsh course, well I didn’t finish it because suddenly I felt somehow very tired and exhausted, definitely not as if I just woke up. Soon I fell asleep again, or rather in a sort of lethargy, with some very weird and enigmatic dreams. But I know that even in those dreams I felt incredibly weak and tired and wondered why. Then I woke up around noon and was really concerned. I just felt so… faint, wiped out, weak, dunno… like I just ran a marathon, haven’t eaten for weeks and was very sick, all together. Even turning in bed was a bit of a challenge. I was dizzy, shaky, sweating and unable to do anything. my pulse was racing And my mind felt lethargic and a bit foggy. After some time, don’t know how much really, Mum came in to my room and told me it’s noon and that we slept really long and that maybe I”d get up already. Hmmmmmm, good sugestion, but… easier said than done. I just couldn’t imagine how I could make such a heroic effort as getting up. But maybe if I got up, ate something, drank a coffee, things would get better? I motivated myself, prepared for the effort for like 15 minutes, then finally managed to sit on the bed. I thought maybe it would be wise if I drank something first, well it’s hot, and we had a lot of salty and spicy stuff in the evening at the barbecue, and I hadn’t drank much then, maybe I’m a bit dehydrated, well I doubted that I can be so very dehydrated to feel this way, apart from the evening I was drinking something almost all the time, but who knows… That thought made my fucking emetophobia kick in. But I wasn’t even strong enough to feel very anxious. I made another considerable effort to reach the glass of water I had on my bedside table. My hands were shaky as if I was a drunkard in intense delirium or something, the part of my mind that was working more efficiently was very concerned that I may soon pour everything over my bed and my precious PlexTalk. It all was taking me ridiculous amounts of time and deep down I felt kinda scared. I even thought about calling my Mum to help me out somehow, but thought that when I’ll call her, she’ll freak out and I’ll freak out too, ’cause it will feel like it’s too bad to manage it on my own so something really concerning is going on, plus I thought I have too little energy to waste it on screaming. As I was drinking the water very slowly, stopping every now and then, I just remembered my Finnish pen pal named Sohvi. Sohvi’s biggest passion is painting, she’s sent me some of her paintings’ photos and my Mum saw them and described them to me and said they seem really good. She could be a professional painter, but can’t, because she has M.E and POTS and I remembered how she wrote me that on her significantly bad days she’s actually unable to do anything and just lies in bed because even sitting can make her dizzy and is too exhausting. So the only times when she can paint or do anything else around the house are when she has her better days. It always seemed so sad for me that she can’t fulfill herself being such a wise and sensitive person as she is. I am quite an empathetic person and my imagination is very fertile so I could imagine how she has to feel on her bad days, but now it felt like a horrifically similar experience, for me personally, not like I know exactly how it is to struggle with these conditions. My imagination started to work. So what? Am I going to end up as Sohvi so suddenly? And what then? I will never translate Vreeswijk’s poems for Polish people, I will never write that novel about the viking gods, my blog will be just hanging in the blogosphere, waiting for the day when I’ll be able to write anything, and my languages… Well that seemed rather saddening. Actually I had similar things happening to me before a few times that I woke up so faint and exhausted but never as intense. It was usually due to too low blood pressure or when I was sick or at some point at the boarding school when my brain was completely screwed up from all the anxiety, stress etc. and I ate very little because of my emetophobia and because I cared very little about and for myself in general. When I drank the water I still had enough ambition to get up, but my body was stronger than me and I just fell on the bed again. Finally I found the strength to get up, didn’t evenΒ  get dressed, although was incredibly dizzy, but managed to get downstairs by some miracle, and then find Mum in the cellar. I told Mum I think something’s wrong with me like I have low blood pressure or sugar or maybe something is going on with me because of the heat, and that I am completely wiped out and actually feel like I’m gonna faint anytime. Mum helped me, or rather dragged me to the kitchen and made me breakfast and then I felt more manageable. I showered, had a black coffee, then two big glasses of Mum’s orange juice and felt almost OK and definitely functional. Although when Mum measured my blood pressure it was still very low and for the whole day I felt dizzy and faint while standing and if I stood for longer it felt really unpleasant. My Mum also wasn’t feeling the best though. I think it’s all because of this heat. Anyway, I’m glad I’m OK now, but it was a bit scary, to just wake up and not be able to do anything, some part of me was really so anxious that almost sure that from now on I’m gonna share Sohvi’s fate although it was ridiculous to think so cos I guess such things don’t happen during one night.

If we were having coffee I’d tell you today Zofijka went to the Jump City with her cousin. It’s because it was Children’s Day yesterday. Zofijka is a kind of kid who always seeks for more adrenaline and likes when a lot of stuff happens around her, and she seemed happy. What I am kind of disappointed about is that those skunk slippers I bought her for her birthday still haven’t come. I hoped maybe I’ll be able to give them to her on Friday, but seems like their road is very long. Tomorrow I’m gonna be home alone for most of the day, Dad is going to work somewhere further and Mum is going with him – he’s a tank driver for those of you who don’t remember and sometimes he takes someone of us with him – and Zofijka is going on the beach with our cousins, and Olek is working. Don’t really know what I will be doing though.

OK, so that would be all from me.

What would you tell me if we were having coffee? πŸ™‚

 

Cara Dillon – “Here’s A Health”.

So as I told you guys today I also have for you a song by Cara Dillon. This one is also a traditional Irish song, apparently was particularly popular in Ulster, in modern times it was popularised by the band called The Chieftains. I really like Cara’s version.

Question of the day.

Recommend to us a lifestyle change.

My answer:

It’s a little hard, I think, because everyone of us can have a completely different lifestyle, has different needs etc. Something pretty universal would be I guess drinking more of healthy drinks. I have an impressionn that we, people in general, drink too little and if we do, these are often fluids that are paradoxically dehydrating like coffee or other caffeinated drinks or fizzy drinks, different very sugary juices, or alcohol, or other stuff like this. I know not all people like drinking just water, although I love it and think it’s just the best thing to drink, but if we’d at least drink some healthy teas, like green tea, or some natural juices, or other fresh and natural drinks that could really help us stay hydrated, that’d still be cool. My Mum, who as I told you multiple times is a lifestyle and health geek, found out a few months ago that actually the best thing to do is to drink water with a little little bit amount of… salt. You can either melt it in the water and then it’s yucky but you can be satisfied when you drink it that you are a total hero, or you can just put the salt in your mouth and then drink the water so it would be less yucky and will melt sooner. But it needs to be healthy salt, like Himalaian or something like this, it is pointless to drink it with your normal salt that you can get in every shop, you’d rather destroy your kidneys this way, or something else. Anyway, apparently if you get in the water with the right kind of salt you get more natrium this way as well as some other things that help your overall well-being, and, what may be a bit paradoxical for some, you can even drop down your blood pressure if it’s too high. Actually it’s quite logical thing if we’ll think that salt keeps the water in our body, although it doesn’t change the fact that this combination is pretty yucky so I myself rarely managed to drink it. My Mum has heard it works for many types of migraines, because they often happen when your natrium is low, and probably something else, and I have migraines very often and tried it, and it actually helped me. But this migraine can’t be full-blown, ’cause then I don’t think anyone would be able to drink water with salt, you’re already nauseous without it, so you need to do it before it fully develops if you want to see the effects. So that would be my vague recommendation for you guys. I can share more details with you as for that my Mum’s discovery if you’d like to find out more and din’t know about it before.

What would you recommend to me and other of my readers? πŸ™‚

Question of the day.

Name one thing you must do more of and one thing you must do less of.

My answer:

Lately I noticed I need more physical activity. It’s been a little bit hard recently. For most of my life, my main physical activity has been horse riding. But this year things have changed slightly. I am taking my final exams this year and preparations consume quite a lot of time, and also money, as I have the tutor who helps me with maths, which is obligatory to pass the exam from and I simply wouldn’t be able to achieve this without her help, I’d say it’s even doubtful with it, but anyway… I needed to stop horse riding for some time as it also consumes a lot of both things. Besides my horse riding instructor and hipotherapist is a very busy person, she is also a professional rider, a doctor – working as anasthesiologist, neurologist and now also on A&E, ER or however you call it – and a mum, and has a lot of both children and adults she works with as either hipotherapist or riding instructor, so sometimes she just doesn’t manage to crowd everyone in her schedule and as I am one of people with less complex needs of those she works with and don’t necessarily need constant therapy/stimulation, it’s more of my hobby, it often happens that I may have breaks between my riding. Also my horse has been not in the best condition lately. I think I”ve told you about my horse ŁoΕ› who is quite an old guy with lots of stormy and not the nicest life experiences and because of that, he’s having more and more health troubles, recently something’s going on with his bronchi. I have my “emergency” horse – Rudy – but he has a lot of people who ride him, mostly children, on a regular basis, so it isn’t always possible for me to ride him. ANd also I’ve been through that awful skin infection which I had on my leg this year which was too painful to ride with. So actually the last time I rode was sometime in December. That’s such a pity. I feel like I’ll forget how to ride! That would be scary, but I hope I won’t and that I’ll be able to come back to riding soon.

Anyway, I’m out of riding for now and it’s a little hard to find some replacement activity. My spacial orientation and related stuff are rubbish, I’m barely able to navigate through our backyard and I don’t feel very confident about it, not to mention anything outside, I need someone to guide me. So I can’t organise much for myself. We do have some walk from time to time with Mum as we have some time on our hands at the same moment, but we both feel like it’s too rarely. At least I do some muscle exercises for my legs to not go out of practice when I’m back to riding, but I’m not that very systematic about that to be honest, especially now in all that mishmash. Hope I’ll be able to take it more seriously after the term session, maybe then I’ll have some more spare time, if the stress before the final exams won’t eat me completely.

The thing I think I should do less is overthinking. This is something I’m really an expert about, I could be a PHD in overthinking really lol. I feel like it’s a bit pathological and often very overwhelming so that I can feel absolutely insane just because of my thoughts overwhelming me. It’s damn hard to have any control over this, but I need to try and try and maybe someday I’ll succeed?

Now it’s your turn. πŸ™‚

Question of the day.

Now we’ll start a bit of a lifestyle questions series, hope you’ll like them. πŸ™‚

Name three things you consume because you believe them to be beneficial to your health.

My answer:

Olives, black and green – I love to eat them (I NEVER eat anything strictly for health purposes if I don’t like it, unless I’m somehow very ill and it’s like the only option to help myself) and I’ve heard they are helpful for our brains, which is very important for me, as I am a freak in this matter, both because I’m simply interested with the brain and am afraid of neurodegenerative illnesses like Alzheimer, Parkinson and others, any dementias and anything capable of destroying human mind. I eat quite a lot of almonds, nuts etc. for the same purpose.

Kefir – as much as I believe milk isn’t the right choice for other people than babies and I don’t like milk and often feel a bit weird after drinking it even though I don’t have any allergy to it, I do like many other milk products and believe they are good for people. Kefir is my favourite. I just love it. It has a lot of calcium apparently, as well as probiotic bacteries. I always use it as a probiotic when I take any antibiotics and it really does work for me. Plus it’s just yummy and refreshing so you can just drink it when you’re thirsty on a hot, summer day and not have any water with you and it quenches thirst really well, just like water.

Lots of spicy things, like chilli, Cayenne pepper, piri piri peppers, garlic, onion, ginger, etc. I’ve heard it all, or some of these products have in them something called… capsaicine? I hope I spell it right, actually I only know for sure how it’s spelled in Polish so just guessing, but it can’t be much different. Anyway, this capsaicine or capsaicin or capsaicinum or whatever it is, is very popular recently, I guess especially amongst people struggling with overweight, because it apparently speeds up the metabolism. I’ve never struggled with any extra weight, actually, I’ve been pretty much underweight for most of my life, but I have hypothyroidism and hypopituitarism which are generally said to slow metabolism down pretty much. Other than that, I love garlic for its antibiotic properties. I hate antibiotics for one reason – actually there are a few, but they all come from one major thing – I’m emetophobic. And if you are emetophobic and on an antibiotic, you might have quite a few reasons for being anxious, the biggest one is simply that vomiting/nausea etc. are one of the most common side effects of such therapy. So any time I feel like I might be sick with something more than a cold, the first thing I do is eating deterent amounts of garlic. Deterent both for the bacteries – at least in some way – and for people around me as well. πŸ˜€ Well it may not cure me totally if I’m particularly sick, but it does help usually. Another reason why I love to eat healthy spicy things is that they help our bodies get rid of extra mucus. As you may know our so called modern lifestyle and modern diet affects us in many negative ways, among others we eat a lot of mucogenic foods and too much mucus isn’t good for our bodies. I have an issue with it after my Mum that I have a tendency to have a lot of mucus in the respiratory tracts whichi is a bit shitty in combination with allergies and asthma and which I definitely don’t want, so I need to somehow clean of it and spicy foods, along with some others, are fantastic for it. I eat especially much of them when it’s winter, ’cause it’s my life long ritual to get some nasty bronchitis in early winter, it can linger for weeks or even months at times and a few years ago I saw that when I eat a lot of spicy things it helps my bronchi to clean more effectively. But even if spicy foods wouldn’t have all those fantastic properties, I’d still love them, I couldn’t live without them, at least since I got out from the boarding school and can eat whatever I want, people even often look at me like I’m crazy or frenzied when they see how much of them I can eat at once, but somehow I can tolerate it and my limit seems to be higher than most of people around me. πŸ˜€

What are your three things? πŸ™‚

A quick update.

I didn’t write anything about my life for quite a while, recently I feel like I’m behind everything, so decided to do it quickly today as I have a bit of free time on my hands.

So I’m back in the routine since last week, my winter break has finished and all goes relatively well. Besides being busy with school, my languages, family life and other stuff, last week I also went to the OM doctor. I think I didn’t mention yet that I am working since about two years in my Dad’s company as an office worker. My Dad is a tank driver and delivers fuel. I don’t do much and it’s surely nothing like the job of my dreams, but I can earn some money which I can save for the future or spend for some things just for myself which I really appreciate and I think I’m lucky I’m in such situation. I suppose lots of disabled people would love to have such a start in life, no matter what they’d do next. So obviously I need to go to the OM doc every year, I had my bloods taken and other things like that and then I talked to him. At some point he wanted to measure my blood pressure, he took my arm and was very astonished why my skin is so dry. Actually, I was astonished too, because I never really thought it was dry. I do have hypothyroidism, but I always thought that, especially as for a person with hypothyroidism, my skin is definitely OK. So I told him I have thyroid issues and maybe it’s about that, but he said he doesn’t think so. My Mum, who was in there with me, was astonished too. He asked her if it feels like her skin is dry. She said that no, absolutely not. We both were actually convinced our skin is very smooth. But he asked her to show him her arm and he said that it is dry. So that amazed us even more, like I didn’t know whether to actually believe him. And he said he’s a dermatologist, besides being an OM doc and we could make an appt with him as a dermatologist if we wanted to. So then I told him that although I’ve never thought about myself as having any bigger skin issues, recently I have often pretty disturbed sleep because of being very itchy at night and Mum said the same is with her, which I already knew about. So he told us there is apparently a genetic condition and when you have it, your skin tends to be dry and the problem increases in winter when you have the heating on or if you stay in air conditioned rooms for long periods of time. I surely am not in air conditioned rooms often, but obviously we do have heating on now when it’s winter and that itchiness occured in me very recently. He also said you can have skin infections frequently, can feel more itchy while having shower or when you’re stressed and that’s exactly what me and Mum experience from some time. So we decided we’ll book an appointment with him. I’ll have it tomorrow. I’m interested what he’ll tell me and what’s this condition, I’ve never heard of it. Sometime ago I wrote about the infection I’m having on my leg and maybe that’s why it’s occurring. So I will show it to him and maybe he’ll have any idea what to do with it, as I definitely don’t want to have it again and want to heal it as quickly as possible, I want to be able to horse ride again, but it’s too painful right now so I wouldn’t have any pleasure of it. So that’s it about my appointment.

As for other things, I finally got accepted to write my final exams in the school for the blind and not the school I’m attending to. My school is a mainstream school and it would be hard for them to technically adapt the exams for me and I would feel challenged and both me and my Mum think like I’d have quite a lot of additional stress while I’ll be already stressed out just with exams, so I’m glad I don’t have to worry about technical stuff now.

The only thing I am worrying about in this case (besides passing the exams of course) is that there is a boarding school as well. While having exams, me and my Mum will most likely have to stay there. It’s not the boarding school I was in, it’s a completely different school and I will stay there with Mum and Zofijka, but I feel kind of stressed about that. I feel like it can be a bit triggering. And I feel weird admitting that actually. I know it’s another school, other circumstances, but seems like my brain doesn’t know that. And that makes me wonder whether if simply staying in the surroundings resembling my school, where I didn’t feel well emotionally, makes me so anxious, even if the circumstances will be completely different, whether it means I have some more trauma around that or what… It makes me feel really weird, it was a really hard time for me, being there, lots of hard stuff, but I wasn’t abused there, well there was a time when I experienced emotional abuse from the staff, but my Mum realised what’s going on and it stopped reoccuring. But other than that, nothing really dramatic happened, no one did any harm to me at least not consciously. So I would really like to know what it’s all about. And, actually, that isn’t the first time and situation in which I’m wondering about it. Am I more traumatised than I think, or just so horrribly emotionally weak? I don’t know if it makes sense for you, I’m not even sure if it makes sense for me so… well it’s just so strange. πŸ˜€ But there’s still some time until May, so hopefully I’ll be able to pick myself together a bit until then. I didn’t talk abaout it with my Mum, but I talked briefly with my Dad. Not about my emotions around that, but just asked him if he would be able and if he would like to go there with us. Because if he could, it would be easier to move around and I know that my Mum would prefer it too, then we could stay somewhere else outside the school. But his work hours are very unpredictable so he didn’t tell me anything in particular and I know he would be bored to death there even if he wouldn’t have to work, so my question was actually rather theoretic.

And the last thing I would like to mention about is that last week I got a wonderful gift from my Maths tutor. She is a typhlopedagogist and surdopedagogist and because I am learning on my own outside of school, just at home, but having trouble with Maths, I have lessons with her two days a week and she explains stuff for me. She is also helping Zofijka with her Maths, although Zofijka goes to school regularly and doesn’t have any special needs, but has issues with Maths and it’s just easier to pay for one tutor than for two. And Zofijka is absolutely fascinated by her. Anyway, what I wanted to tell you is, last week on Tuesday, when she came to us she had three large boxes of gem stones for me! I was so excited and I really appreciated the fact she remembered that I collect gem stones. After all she’s only my tutor, but she’s really involved and helpful. Some time ago we chatted after the lesson and she saw my huge collection and I told her a bit about it and showed her many of my stones and she mentioned her brother was collecting gem stones and other minerals when he was younger and now no one cares about them so she brought them to me. And there are a few pretty rare minerals, some which I looked for and couldn’t find anywhere, so, yeah, I was extatic. πŸ˜€

Today I’m having a really peaceful day finally which I really appreciate. I spent a lot of time with my Mum. Zofijka has sinus infection so she’s still at home and we played a lot. And although I had lots of weird and sometimes scary dreams recently, I feel really well today.

How is it going for you guys? πŸ™‚

I just “loove” weird, scary dreams.

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

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

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

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

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

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

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

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

I hope you all are having a nice Saturday.

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

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

Ugh, again? Some general update and a little health ramble.

Today it would be a really nice day for me, if not the fact I’m feeling really crappy physically.
Remember when last week I was writing about my emotional crisis I had on my birthday? I wrote it can be partially due to PMS and now I am sure it was true. Only why I have to feel PMS symptoms for more than a week before the actual time of surfing the crimson wave? Luckily emotionally I am much more stable than then and I hope it’ll continue, ’cause that was scary.
But OK, I can fully understand that aunt Ruby or Flo or whatever is her name, has her own rights, but why my leg is not cooperative either? Seriously, I am starting to worry, or at least wonder.
I got a weird and pretty painful wound on my calf and what is the more weird about it that a year ago I had an almost exactly looking wound on my other calf. Same was two years ago on the same leg as now, but not exactly in the same place as now. And moreover as far as I remember it was also in February, ’cause it was close to my Dad’s name day and it was annoyingly hard to heal. I had no idea where I could get it, it was like totally out of no where, so that my Mum even thought it may be some ulcer, which scared me, but when I went to my GP with it, she said it’s just a form of infection. I remember that last year it finally healed in April. So now I think it must be something chronic and I think I’ll need to visit someone who could tell me more than my GP. I was even wondering ’cause people with diabetes have issues with skin regeneration and I am apparently at a higher risk ’cause I was taking growth hormone in childhood and people on the both sides of my family have diabetes, but because I was taking that hormone I have tests about once a year and they were as good as always recently. I really want to know, even just of curiosity, what it is. Plus it pisses me off. My leg is hurting so much since a few days that even walking for a longer distance is a bit challenging. I discovered that it’s back with me when I went shopping with my Mum on Tuesday and then we went for a longer walk almost around our whole town and when we came back my calf started to burn horribly.
And it is also shitty because yesterday I was meant to go horse riding. I didn’t ride for a really really long time now, since Christmas, I believe, so I fell out of the routine completely. But my instructor is a very busy person, she is not only a horse riding instructor and hypotherapist, but also a doctor – anasthesiologist and neurologist and recently also works on ER a lot. Plus she has her own, big family and it always surprises me how she can manage it all and before now I could ride pretty regularly once a week unless she had to go to ER. I like the fact that she is a neurologist ’cause we can talk a lot about the brain and related stuff which i always appreciate, I’ve learnt a lot from her and it is thanks to her that I realised that if I could see, I would most probably end up as a brain surgeon. Anyway, back to my horse riding, she texted me on Wednesday evening she finally was able to schedule an hour on Thursday for me and asked me whether I’d like to go. It hurt me but I felt so excited that I impulsively wrote that yes sure I will come, but yesterday morning the pain was big enough that I realised it won’t be anything neither pleaasant nor beneficial if I went riding, I could easily make it hurt even more and I wouldn’t do a good job ’cause even my muscles around the wound were hurting.
I find life much more boring without riding. As for now I use Rivanol and tea tree oil to treat it but surely will end up on antibiotic as last year, I just didn’t go to any doctor yet.
Tomorrow is my Dad name day. You know what name day is? I know there are only a few countries now which celebrate it so if you don’t know, it’s basically the day when your patron saint has his/her feast. It’s a purely Christian tradition but now it’s celebrated just like your second birthday or something. Just another opportunity to eat as much as possible and have your family gathered together. There are all name days listed in Polish calendars, although they differ slightly and you probably won’t find exactly the same names under the same dates in two different calendars, but there are some conventional dates. Tomorrow is the name day of Elwira, Jacek, Jacenty and Scholastyka and therefore my Dad who is Jacek (or Hyacinth in English) is having his name day. It’s a bit weird to me though because saint Hyacinth who has his feast day tomorrow is almost unknown while we have another saint Hyacinth who was Polish and whose feast day is celebrated in August and he is much more known, so if I was my Dad, I would pick my name day to be in August on that other saint Hyacinth’s day, but I think it doesn’t matter that much for most people.
So tomorrow we will have even bigger family gathering than it was on my birthday and there will also be my Dad’s friends and I hope I won’t have to endure another emotional crisis. My poor Mum is in the kitchen almost all day long. She isn’t preparing that much food, but my Dad will have a big toffi cake. Ridiculous, because he can’t stand anything sweet. πŸ˜€ But we love toffi cake. Me, Zofijka, Olek and my Mum kind of likes it as well. And I am sure all the guests will be happy with it too. Toffi is such a delicious thing to eat. Will share with you tomorrow lol.
Now I am listening to Welsh music all the time, as it is Welsh Language Music Day today, so I definitely need to celebrate it. I’ve also learnt some Welsh today. But now I think I will go and nap for a while, ’cause my leg is hurting, my abdomen is hurting, my head is hurting and I feel quite miserable physically.
How are you guys doing? Any nice plans for the weekend? Maybe you’re celebrating something as well? Anyway, whatever you’re doing, I wish you a great weekend.