Question of the day (3rd March).

What was the last thing someone said that made you angry?

My answer:

My Mum said something that made me quite angry, well okay not angry but rather frustrated anyway. I was recently telling you about my dilemmas with the occupational medicine doctor, and how he doesn’t understand how different types of benefits work in our country, and doesn’t understand that despite being on benefits, I am still able to do the work that I do, and is scared that when he’ll confirm that, someone’s going to kill him or whatever, so instead of educating himself on the topic, through his colleagues or online or I don’t know how else, he sends me and my medical documentation back and forth between different places and wants to have an official explanation just for himself of something that’s stated on my disability benefits claim that’s clear to everyone else in the field and everyone involved, and just keeps making quite a bit of fuss and problem. So, to fill you in on the recent developments, he sent my documentation to the Occupational Medicine Centre, and asked them to explain whether I am able to work or not, interpret that statement on the claim, have a consultation with me or something, despite it’s not their competence at all. A couple days ago, they sent a letter to me, and to him, saying exactly that, that it’s not their competence to make such clarifications and that they don’t really understand what he wants from them, like what’s unclear. 😀 My Mum said that this will probably be very embarrassing to receive something like this and have his own incompetence pointed out in such a way, and today she went to see him about that, without me this time as she was going out anyway and he was not going to make any more check-ups or tests for me so it would be rather pointless if I went. Mum was sure that now that things are clear, that the OM Centre can’t do what he wants from them, and that the situation is clear to everyone except him, his eyes will finally open, and he will write that, from his – that is only OM – point of view, I am able to continue to work, and won’t be so scared of that as if he was doing some kind of crime or whatever. But, sadly, dr Jacek is too much of a chicken. He wants to continue the saga and write an appeal letter to them. When Mum told me that, I just couldn’t believe it for a while! I just wish he educated himself on different kinds of benefits and stuff, actually it feels puzzling how someone like this could get into occupational medicine. I guess he only knows how to deal with the most typical cases, but when things like disability are involved his brain can’t cope. I was thinking that if he’ll make further trouble, I’ll just change OM doctors, but it actually seems like a lot of ordeal in itself, with transfering my medical documentation from there to some other place. I guess I’ll just have to deal with it and hope it will end soon and things will be back to normal.

How about you?

If We Were Having Coffee… #WeekendCoffeeShare

Hey all you lovely people!

The

Weekend Coffee Share

link-up at Eclectic Alli’s is still lasting, so I’m happy to join in this week!

Let’s have some coffee, or anything else you’d like to drink, and maybe a snack to go with it.

It’s my Mum’s birthday, as well as Olek’s, and I’d love to share some cake with you, because it was super yummy, but, sadly, just a little while ago, the rest of it that hadn’t still got eaten, died a tragical death – Mum broke the plate with it, so the remaining cake was full of small pieces of glass. I was lucky because I got to eat the last edible piece only minutes before the accident! 😀 But I have tea, orange juice, Pepsi, and there still is a cake from bakery, but, although I haven’t had it, I’m sure it isn’t as good at my Mum’s was. And of course you can bring a drink or food of your own and have it, and share with other people if you want, as always.

If we were having coffee, I’d ask all of you how you’ve been doing… 🙂

If we were having coffee, I’d tell you that last week was quite eventful. Last Monday my family – that is my parents and Sofi – had a car accident. That was of course very shocking for everyone. Mum picked up Zofijka from her tennis class, as well as two of her friends, and they were going to head home when Dad called Mum to pick him up from work. She was reluctant to do that because that time around he was quite far away and she didn’t feel okay driving that far with all those kids and would prefer to drop at least Sofi’s friends to their homes, but there was no time. When they were on their way back home, there was a crossing in our town that Mum is always kind of apprehensive of, and while she was driving through it, they got hit by some young guy who was driving just crazily fast. I don’t know how it exactly looked like but anyway apparently it was only some immense, miraculous luck, that neither my Dad, nor one of Sofi’s friends, didn’t get killed or badly hurt. At the time, I was in my room, downloading some books, and having a yucky headache and was planning that as soon as I get done with it I’ll go to bed. As I thought that, my phone rang and I heard sobbing Sofi, who was standing outside and wanted me to let her in, because she didn’t have the key. Obviously that alarmed me immediately because I knew Mum has left to pick her up, and I asked her if there was something wrong, and she said yes, so I went downstairs quickly to let her in, and then I couldn’t believe what she was saying for quite some time. Mum had to stay there and wait for the police, but a couple who witnessed the whole thing helped her and her friends get back home. Apparently that young boy was just 18 and only had his driver’s licence for about half a year, and was jittery and really scared when that happened, and Sofi heard him saying that he’ll kill himself. I really hope he didn’t, or won’t. Mum’s car is a total wreck and we don’t know yet if it can be fixed at all. But thankfully nothing happened to anyone, other than shock, but we all managed to pick ourselves up after that pretty quickly. The first thing that I thought of when it finally sank in for me what Sofi was saying was that Mum must be devastated. She’s seen many accidents and whenever she sees anything like that, even less serious, she always cries, so I was sure she must be in quite a state emotionally. Turns out she was really brave this time and very cool-headed and didn’t cry at all, and was very surprised at that herself.

If we were having coffee, I’d tell you that I’m just going through some sort of an occupational medicine saga. I had my OM check-up two weeks ago like every 2 years, and during it, it came up that on the decision of the institution which granted me disability benefits, it’s stated that I am “completely unfit for work”. That alarmed my OM doctor who said that, although he knows that I’ve been working for 4-5 years already and am able to do it despite my disability, it needs to be clarified, because someone might have a problem with that later on, for example if I change OM doctors or something, and I may not be allowed to work. So he referred me to the Occupational Medicine Centre to clear it and asked them to interpret that particular statement. From then on, I’ve been going back and forth between my OM doctor and the OM centre and it’s getting really unpleasant. In the meantime, me and my Mum asked the institution from which I get my disability benefits, which is called Social Insurances Association or something like this in Poland, and they told us that this statement “completely unfit for work” is something that a competent OM doctor should be familiar with and not make so much fuss around it, because they always write it when someone is on social benefits because of disability, and it means that you can only work in a position that’s adjusted to your needs. Of course it’s official jargon, and this statement is weird – an average person with not much knowledge in those matters wouldn’t think that “completely unfit for work” would mean anything else than “completely unfit for work”, but since this jargon is specific for the field, and he is an OM doctor, it seems very incompetent and  no professional indeed that he doesn’t know such things and takes it literally. – My OM doctor is also a dermatologist, and it seems like he doesn’t really manage juggling those two specialisations at the same time, especially that one year when I visited him, he told me that he’s “probably the best dermatologist in the county”, so I suppose he focuses so much on being such a great dermatologist that he doesn’t have enough time on being a decent OM doctor and have the minimum knowledge. I came back to him after that, explaining to him what I’ve learnt, but he still insists on interpreting it just for him by someone from the OM Centre. It seems like, because he doesn’t know the rules and procedures and the basic terms used in his field of work, he is afraid to renew his decision that I can still work, because what if someone will say that I can’t and then he’ll have to bear the consequences. Instead of researching the topic himself or asking someone more knowledgeable, he wants me to do the job for him and interpret stuff that’s obvious for anyone who has some basic idea about how benefits work here. I’ll do that because as it seems right now I don’t have a better option, but then I think I’ll say goodbye to the best dermatologist in the county and find myself some other OM doctor. Sadly, this guy’s name is Jacek. I think he could be nice as a person, even if a bit too cocky, but even when your name is Jacek, it doesn’t immediately make you great at everything as it seems. 😀 Not that I didn’t know previously that Jaceks do have their weaknesses too, like all other people.

If we were having coffee, I’d tell you that I’m fighting for and stressing over some of my speech synths that I’ve lost. I don’t know if I’ve told you that or not, but in that whole wave of tech issues and computer transition I’d had, I’ve lost ALL of my licences for those voices and the accompanying app. I won’t get into the details of how it happened, but to put it shortly, you get those speech synthesisers in the app on a USB stick, and that stick comes with 3 licences that enable you to install it locally. You can have one licence on one computer and of course you can remove it from it and transfer it back on to it as you wish. Except for when you have some unpredictable system crash that requires some major repairs and digging inside of it, drive replacement, etc. Then, even if you still have the same computer, the same system and haven’t removed the licence and uninstalled the app, your licence is still there but you are unable to use it, and neither can you remove it. And because usually we are not able to predict when our computers will crash, and also because I wasn’t aware of that, I gradually lost all of my licences because of some major changes on my computers and am stuck in a dead poind with them. So I had to contact the producer, they weren’t responding for a good few weeks so finally I decided to call them, which my Mum was persuading me to do for a long time and saying that I should do that in the first place. That cost me a lot as you can imagine if you know me at least a bit, but I was just like there’s no way I’m going to lose them permanently, I have to get them to do something. So I explained in Swenglish to the girl who answered my call (I called their Swedish quarters) what happened and what I want from them, but our communication was very poor because we couldn’t hear each other very well for some reason and besides she seemed quite clueless and the only thing she could do was to collect the info on the problem for me and she said she’d pass it on to other people and when they’ll know something, they’ll call me back. No one did for over a week, so I was thinking I’ll have to start flooding them with emails, but luckily before I started out with that, I got a response to my email. I now have 3 new licences from them that I can use, but to keep things interesting, I cannot, because for some reason a licence won’t transfer on to my computer. So the guy from that company will have to do something with it remotely. That makes me quite anxious and I’m not sure why. I mean the thing has been very stressful for me since the beginning but since that has become a real possibility I’m stressing about it much more. Am I such a privacy freak, or am I anxious of what the problem might be because it looks serious and that something will go wrong and because I have little experience with getting remote assistance, or am I scared of the interacting, probably a fair bit of it, that I’ll have to do with him, or what, no idea!

If we were having coffee, I’d tell you that, while my anxiety has been pretty high for a long time now and hasn’t come down to what I perceive my baseline level in months, and now has actually gotten higher recently because as you can see things have been chaotic, the good news is that my depressive symptoms, including anhedonia, have alleviated a bit, and I have more energy for things, yay! I still don’t have a faza which stinks like a skunk, and it’s still far from my “normal”, but it’s better, so let’s hope this will continue! It certainly makes life that bit easier, and makes you feel a bit less like you have to fake everything you’re supposed to feel all the time, or less shitty about yourself when you are not able to fake. Concerning fazas and continuing what I wrote about in

this post

, if I ever thought that Jack Vallier was going to be my next crush, now I know he definitely won’t! Sofi took him over from me! Despite she doesn’t like “guys with earrings”. 😀 Yesterday we were sitting in the kitchen – us and Mum – and she was listening to the music, and then she played one of Jack’s songs and said: “Mum, guess who it is, this guy who’s singing?”. Of course Mum didn’t know. “It’s Jack V… I don’t know, but he’s Jack, he was going to be Emi’s crush but he’s too normal for her. So I’m taking him over. He looks awful but I love his music so much”. 🤣 Then I heard her talking to Dad, asking him if it’s possible that she/we could go to London this summer, because she’s read somewhere that her crush is going to have a concert there. Of course Dad didn’t agree. I don’t mind Sofi taking Jack over because as I said I didn’t think I would be able to get a faza on someone so normal anyway, and he’s more Sofi’s style, I mean his music is, and I know that for her, crush is something different than for me and we both understand it differently. It probably won’t even last very long for her. However if I did have a faza on Jack that would be really unfortunate, because I can’t imagine sharing my faza objects with Sofi hahaha.

If we were having coffee I’d tell you that me and Olek collectively bought Mum a new phone for her birthday, a Samsung Galaxy, though obviously I don’t remember which one exactly. It was Olek’s idea. I thought it was cool but also was a bit apprehensive of it, my Mum had always had LG phones and liked them, so I wasn’t sure if she’d like it. Of course she now has to get used to it, which always takes some time, but so far I guess she feels positive about it which I’m glad about.

What would YOU tell me if we were having coffee? 🙂

 

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. 😀 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. 😀

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? 🙂