The Cardiff Routine

You know it. You sit down all excited to start writing that AMAZING COOL BOMBASTIC ORGANIC GLUTEN-FREE blog post. But than, you realize it.

So you sit there, staring at the screen (now you're staring at the cat, aren't you), or typing the words at the rate of 10 characters a minute knowing, deep inside, that you actually don't have a topic. You take a quick scan through the memory lanes: "traffic jam on the way to work", "jam with some friend", "crumpets with butter and jam". In short - lots of jam and some good stuff, but nothing too fancy. Nothing BIG! And most surely - nothing gluten free.

Until you realize, that the beauty lies in the small things and even the daily routine can be made interesting, if sufficiently inflated! Therefore, dear readers, this blog post will be about my daily routine, just like I once did back in the time when I came to Oslo. So let's get into it.

UPDATE: Much of the following was written still during the long cold winter, before the sun came! Now it's actually warm and sunny, like in Croatia.

Cardiff a month after I started writing this blog post

Wales a month before I finished writing this blog post (I think I'm a slow writer)

I wake up. It's 6:15 am. After a night with heating down, the flat is usually quite chilly in the morning so once the alarm rings, there's really only two options:
a) snooze and get the hell back under the covers!
b) wake up, get dressed and get the hell out!

You see that either way I have to get the hell somewhere, so we can say it is a very decisive moment of the day. I must, somewhat proudly, say, that I am fairly consistent with the option b), although it may come across less impressive if I admit I set the alarm that early only a couple of times a week. My eventual goal, however, is to get into the regime of my colleague, who wakes up, goes for a run and still beats me to be in work by the time I arrive, all despite having one more baby than me (I have zero, just to be clear)! Amazing will power! Or perhaps just loud-screaming baby at 5 am? Either way, very accomplished feat.

After waking up, a super quick routine follows. Splash on face, boiled water over prepped box of porridge, some push ups if time (and will) permits (usually not), packing the food for the day and off I am, on my way to the bus stop. Through my street, past the yellow Ferrari, by the fancy Chinese dorms and on to the Newport road, where the bus stop is.

Now, we come to the part which, since my move to the new flat and my switch from a train+bike combo to a direct bus ride became a hot topic. Indeed, it almost came to the point where I included the "bus ride" topic into virtually any conversation. However, I must say I am always very tactful about this inclusion ("morning Fero, how's it going?" . "F***ING BUS!")

Essentially, the basic theorem of the "Introduction to bus ride theory" says that there are two options how you can get to work by using a bus:
a.) SUPER-MEGA EARLY version
b.) HORRIBLY-DEADLY LATE version

The option a.) means taking either the 6:43 bus, or 7:13 one, although the latter often already runs into the traffic at the Dic*head Roundabout (we'll discuss the 3 jolly roundabouts in a sec), thus one often regretting snoozing for the extra 30 minutes of sleep. The option b.) means leaving for work around 9am, once the traffic has calmed down, although at that time, the buses do come with a certain element of randomness, expressed by this simple stochastic equation:

You see, the problem is due to something that Brits embrace more enthusiastically than a bottle of bubbly on a Saturday night. The roundabouts. Brits love roundabouts. It's their hobby and their passion. The roundabouts here are, however, not just any kinds of roundabouts. These are proper, complicated roundabouts with multiple lanes and special rules, they're adrenaline puzzles to be solved in high speed, they're whirlpools of cars, the ever spinning tornadoes of traffic, the points where every journey begins and where every journey ends...

It is therefore not surprising that two out of the three "jolly" (author uses the word "jolly" in a ironic meaning) roundabouts are of those big complex monster sorts. These are called The Deadly roundabout and the other one's nickname I forgot, though I can assure you it was sufficiently pejorative. That leaves us with the earlier mentioned Di.. ehm, roundabout, a funny beast, since he (roundabouts are guys) is not one of those complex or multilane ones, yet it's causing the most amount of frustration.

(UPDATE, I have been writing this blog post now for a while, and I am happy to say that the situation has improved. I am also sad, because this means I have less topics for discussions, leading to long pauses of awkward silence previously filled by complaining about buses and roundabouts)

I usually have my breakfast on the bus. I am just one of those people. But also, it's very hard to read. This is because the bus X5, that I chose to be loyal to has a journey, that takes path not very different from the following picture.

Journey of the X5 bus from Cardiff to Newport

At some point, the bus even makes a 360 turn on a roundabout, which I suspect is included to give the locals on board the daily roundabouts dose (4.76 is the minimum recommended dosage) and to provide panoramatic views of the posh St. Mellons area.

Anyway, I usually somehow make it to work and still in the jolly mood from the travel, I say hi to the ONS rabbits merrily hopping around on the campus, unaware of the heavy decisions on next quarter's GDP being made just few meters away! I then enter the huge 5 floor building, swipe my badge and head up to the first floor of block 1, where our Big data team sits.

Merrily hopping ONS rabbits

ONS is huge, not only in terms of the building size, but also when one considers the number of people working here. Just the site in Newport employs around 2000 people! Sometimes I cannot help but wonder what everyone is doing. Hell, sometimes I cannot but wonder what I am doing!

But throughout the bit-over-a-year that I am working here, I came to really like my job. It's really a nice mix of programming, research, fiddling with data, writing papers, presenting, and bit of managing too. It's simply a carrot soup with chocolate pieces, blackberries, chicken and beans, served with Italian tomatoes. What I want to say is that if all ingredients are good, it just cannot be bad!

Good thing about ONS is a flexible working time, giving you quite a bit of freedom to create your working schedule and vary it, should need be. And I really think no other benefit can match this. Once you try it, you don't want to go back.

Another nice thing are the extra-curricular activities one can choose to participate in. There's frequent bake-off competitions, diversity lunches that group expats or the ONS choir that runs every Tuesday lunchtime. The latter has now really picked up momentum, especially since we slowly started to bring over instruments, slowly and inconspicuously turning the choir into a huge band featuring guitar, bass guitar, ukulele, piano, violin and possibly more in the future, not to mention the many voices that actually know how to sing! Simply fun and something to look forward to every Tuesday. Plus the choir serves as a good ice-breaker whenever someone starts working in ONS:

Hi, your first day?
Yes.
You sing?

For some reason, I have so far only limited success making friends with this technique.

Choir concert

But in general, work is cool and I can see why some people stay in ONS for tens of years. It's simply a nice place to work in, it has flexi time and a rabbits on the campus - what else do you want?

After work, I hop on a bus, much in the same way that the rabbits are hopping around the campus, i.e merrily. I will not bore you anymore with the details of the journey back. Let's just say that if you want to build a picture of how it looks like, read this blog post backwards!

On Fridays, I would often work from home, which not only helps to reduce time spent commuting and rotating at roundabouts, but it also gives me the unique chance to do bit of "sourdoughing" (really not sure how to translate "kvaskovanie"). The thing is that making a home made sourdough bread does not take long time in total, but requires a minute here and there every 45 minutes or so, e.g. to fold the dough or transfer it to the proofing basket. If this sounds like Chinese to you, then you should pause reading now, go outside and stop the oldest person on the street and ask them how they did bread back in the past! For the result, dear readers, is worth it (I mean, the result of making homemade sourdough bread. But also the result of that conversation you'd have will be worth it. Old people bear lots of wisdom and wit!)

The result that's WORTH it!

My (hard) working from home position

Routine is one thing and I am one of those people that like to have one. It takes care of some daily decision making and thus saves one considerable energy that you can instead focus on other stuff. The non routine stuff. The spice of life!

One such spice happens twice a month on Wednesdays. Cardiff Toastmasters has become something of a second home and a family. A vibrant and bustling club, people from all walks of life and a vital dose of education, inspiration and motivation are just few reasons why I make sure this event is clearly marked in my calendar. Where else do you meet (among others) a hypnotherapis, professional rugby player, tax lawyer, bunch of students and a guy that cycled the length of Britain for a good cause, all sharing their stories and making steps to improve themselves and those around?

Cardiff Toastmasters

Another important spice is definitely music. I've realized I have been stagnating in this regard for a while now and so made a mental resolution to, from now on, take every opportunity I see. So I invested in some new gear, made a come back to the streets of Cardiff and resumed playing with other people - for if there's one way to get better in playing, it's by learning from others. Plus it just sounds so awesome when people find that way of talking to each other using music... It takes time, but the result pays off. Music is simply the connection to another world, going away for a journey and leaving all worries behind

Brumhilde - the recent new member of the family

Busking comeback as captured by paparazzi Alex

Jamming with "ONS music ensemble" folks, a spin-off from the choir at work

There's more things to mention - "chilling" with friends, park runs, or, when the nice weather coincides with the will of the right people, some memorable trips in Brecon Beacons. 

After 10k run along river Taff with Kika and Peto

Camping in Brecon Beacons. Weather like we had is to be appreciated!

But hey, this post is about the routine, right? So let me stop here. At least I'll save some inspiration for the next time and won't just blankly stare at the screen!

Hey you, bro, '17!

Hey bro.

Your time has come. There's no turning back. You'll have to go, just take a moment to see if you got all your personal belongings, then mind the gap, if any, and leave.

You've been an interesting one. I would like to say good, but there have been better (for me). I could also say a bad one, but usually everything bad is good for something in the end. So, '17, bro, how've you been mate?

Well, work-wise, I owe you man. The job in ONS feels finally like the right thing for me - messing around with the data, doing some interesting vis and ML, more responsibility too, sprinkled with hackathons, trainings, occasional travel... Just the right soup. Office and its people are cool dudes too (our team, choir, diversity group...). Simply good stuff. '18, yo man, hope you got something up your sleeve to beat your ol' brother! Some new challenges so I ain't bored, you know what I mean bro?

With colleagues from a work on a Eurostat project, Thessaloniki

ONS choir - summer concert

ONS choir - autumn concert

Yeah, work was cool. On the other hand, the housing sucked. We should have moved a long time ago - it's just not worth the trouble house-sharing with so many other people and being crowded in one room. But thanks at least for that last minute deal to finally move out in January! You really pulled that out last minute, didn't ya?

As for guitar, well, not much on that front fella. Where was all the inspiration from previous years? Just a few times busking is not enough so '18, bro - hope you have a proper chat with '15 to get some fresh ideas! Some more jamming, open-mic-ing, recording and stuff. No excuses, right buddy?

Toastmasters took time, you say? Well yeah, true, though that's not the main culprit. Was it worth it though? Oh absolutely. The club grew massively, lots of new interesting people and friends. Yo, '18, see that? Watch and learn! But also, bro, this time you prep some dates for me to do speeches too, was out of the game for some time and that ain't no good!

Cardiff Toastmasters, Christmas meeting

Ok, '17 bro. All those things above - you tried at least. But what the hell was that with the eczema and shit! Health-wise, nope, no good AT ALL, man! This really took the best of me this year. Vacations did not feel like vacations, almost no proper hikes done, sports on hold, no time for nothing, all those damn diets and that stupid itch... You showed me bro, how joy can be taken from life. Say what? The last-minute December patch-up, you say? Ok, I feel much better now, but hah - just a small compensation for those hellish months! And even if all this stuff from doctors works now, I don't think things are cured. I'd simply rather not make conclusions too quickly, bro...

All right, all right. I've been rather harsh there. And I know I should look for positives... Ok, so let me see. Well, I suppose I found a lots of new recipes and tried lots of different foods. What else, hm. Ok, so I realized what it means to be stressed, that my life is not just an algorithm to optimize and that things should be taken much more easy. To actually take them easy is another thing. Perhaps point for you, '18, teach me to let things go in certain situations? So a "learning opportunity" it is. And I guess I learned I should pay attention more to myself, sleep a lot, check my body etc etc.. Oh well, we all grow older... And yeah, you're right, one thing I owe you, I found out how many amazing people are out there, willing to help. That counts for you '17 bro, just please, if you ever come back (I dunno, some time machine or shit), just, well, calm down.

Pen y Fan, Brecon Beacons

Looking at y'all bunch out there, it seems to me some of you are special.. Defining, I might say, you know? Like you, '13 for example, but also you '17, buddy. It may not be some super special events that you've brought, or major changes in life. It's often the minor things that make you re-think stuff and push you to a different stage in life - the real changes then happen in your head. You, '17 got me thinking, thinking freaking lot. I don't think I know the answers to half the questions you posed, bro. But I do hope that you '18, buddy, have some answers out there for me.

Over to you, '18, bro.

This is what it is...

UPDATE - 30. December 2017

Hi everyone.

First of all, many, many thanks for all the comments and wishes! It really meant a lot and helped me stay mentally strong to go through the hell... Immediately as I posted the article, I felt a relieve, sort of breaking some mental barrier. Couple of weeks later, I managed to finally see a dermatologist, still in Cardiff, as part of doing patch-testing. This time, I have to say, it was much more professional (perhaps cause the condition was so serious) but also I gained a feeling the doctors really want to help (which is not always the case, yet it is so vital). Similarly, my new GP was now more helpful too.

Right after the patch-testing week, I also finally went to Slovakia to see doctors there, including immunologist, dermatologist and for some complex tests on oncology. Lots of testing was carried out with minimal results - the only thing that came out was a "decreased cell immunity" and some indicators that I am "allergic". "To what" or "why" was not really answered, though lots of things were tested for and found negative (e.g. Histamine intolerance). I took a "blind" (i.e. without prior tests) anti-parasite and anti-fungal treatment as parasites or fungus can aggravate things + a similar "blind" treatment for Scabies. I increased antihistamine dosage (Fexofenadine twice daily, later Dasselta 4x day), got an immuno-suppresive ointment (Protopic 0.1%) as well as a drug to improve immunity (ironic, isn't it? :-) ), lots of creams and lotions (Excipial Lipo-lotio, Indulona, creams from Bioderma...), supplements (probiotics, vitamin D), cosmetics (Bioderma shower oil, Nizoral shampoo) and few other things. Just to give you an idea, all the stuff I got from pharmacy was round 300 pounds and all in all my health-care expenses were round 1300 pounds in November and December, despite getting last-minute a health-care cover in Slovakia through e106. I would not like to see the bill otherwise. Yep, better keep healthy these days!

 

Stuff from the pharmacy (first batch only).

The treatment had a good kick-in - I think Protopic worked quite fast, though I felt the condition was improving by then already (e.g. lymph nodes were getting smaller). I would spend hours a day applying different creams all over body, then waiting for them to dry up, so that I can apply another one. I would take baths with Oilatum (moisturising additive) and Potassium permanganate (anti-bacterial) almost every day. I ate (and still do) lots of garlic, ginger, turmeric, cider vinegar... And I tried to have loads of rest and as little stress as possible. All in all, with a couple smaller set-backs, the condition was slowly improving, which is why I eventually did not go for a hospitalisation that I was referred to by a Slovak dermatologist.

Right now, I am back home in Slovakia, where I've been for the past 2 and half weeks. I feel quite normal, like a human, which is amazing feeling, although something still itches here and there every day. It is incomparable with what was there before, but you can imagine I am now wary of anything.

I guess I have concerns over the future - what will happen when I come back to UK and its climate (tomorrow) and how this will work long term (e.g. Protopic shouldn't be used long-term). But again, to sum it up for now: I feel better and I'm gonna do my best not to fall back into the hell of the past. And I still haven't tried most of the many advises and recommendations all of you gave me! :-)

Thank you
Fero

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I don't like to complain or put myself in a position of someone who needs attention. But I feel I have to write this post for two very important reasons. First, simply because I really - and I mean it, really -  need help and perhaps one of you reading this will be able to help. I desperately want my life back and enjoy it again, as I used to... And second, because I want the people in my life to know that this is simply how I feel. I've rejected hanging out, hikes, parties and even calls - not because I wouldn't like to hang out, hike, party or chat, but because in my current situation, many things get just way too difficult.

So what's going on? In short, I suffer from extreme itching and I've been fighting this now for over 7 months. It's all over the body, it's almost incessant and it's the most debilitating thing that I've ever experienced in my life. On average day, I would spend literally over an hour doing nothing else then just scratching that abnormally itchy skin. Nails, rough towel, edge of the table... Anything to rub the skin. It's madness. By the time the itching subsides, the skin is often sore or damaged, meaning that even in the rare times of no itch, there's discomfort instead.

October 2017. Rash is literally everywhere

The itch comes often strong in the morning. That moment when I get out of bed has become a dreadful part of the day. The skin is incredibly dry, it's a challenge to move neck and quite often the itch would wake up with me. Another thing I dread is sweat, for this often brings another insatiable itch. So I stopped playing football or running, fear doing more of my beloved hiking, or even fear dressing up too warm in the cold, in case I'd start sweating under the clothes... And sometimes, lately, there is this weird itching seizure. I cannot describe it anything else then "pure madness". When it comes, I itch like crazy but scratching does not help as I feel like it's coming somewhere from within. I don't know if this is an allergic reaction (never had that before) but I can imagine this is how it feels. Once it's gone, I just lay in exhaustion with destroyed skin...

April 2017 - this is when the whole thing spread

Then there is the incessant itch. Not extremely strong, but strong enough, stinging and tingling here and there, every few seconds and breaking my concentration or attempts to sleep. It's frustrating, exhausting and completely debilitating. I can't count how many hours I lost this way, trying to do work but failing due to the itch, or waking up tired for lack of proper sleep. My productivity in work has gone down and even now, writing this post, it is a challenge. The itching is simply completely destroying me, both physically and mentally...

Other than itching I often literally shake from being cold. This is especially weird, considering that most colleagues around me complain it's "too hot" and turn on fans on them. I am not really sure what's going on, whether this is an extremely severe case of Eczema, or something else. The only thing I know if that something is seriously wrong with me.

Close up on the rash on the chest

Of course, I am trying to solve this. I've seen my UK GPs probably 20 times. I've even changed to another GP. I've seen a dermatologist in NHS. I will soon fly to Slovakia, just to see more specialists there. I've tried acupuncture. I've tried dozen of different creams, even made my own. I've tried diets, went 4 days without food drinking just bone broth or 7 days eating just rice (yes, only rice). Gluten free, dairy free, sugar free diets, low-histamine diet, you name it... I've tried antihistamines, doing meditations, I'm taking loads of supplements. There's a few things that somewhat sometimes seem to work to relieve the symptoms. But most of this just takes enormous amount of energy, time, and money and often results in frustration and more stress. With days filled with searching Internet for new options, seeing doctors, looking for special food, cooking special foods, and, worst of all, scratching, I am glad I am simply still able to come to work...

The problem here in UK is that, let's be honest, the health care just does not work. The GPs are often a pure joke (though there are rare exceptions). In my old surgery (Canna surgery), I've seen all the doctors there several times. None of them really helped and none of them really knew how to help. They would literally ask me "so what should I do", like a child who discovers their father for the first time with a high fever lying on a couch. The only thing they were able to do is prescribe tons of moisturizers and steroid creams, and, of course, write referral to a dermatologist. But this is where it gets tricky - I've seen a dermatologist here in UK once - and only once, even though I was referred to them more than year and half ago. The waiting lists are simply ridiculously long, leaving a huge gap of almost a year when "you're on your own" . And then, when you finally get your turn, you better be quick cause your slot is usually just 15-20 minutes long - for me not enough to even explain what's happening, yet alone get a diagnosis or some proper help...

Of course, you can go "see dermatologist privately" . Then you "only" wait few weeks and pay "just" 160 pounds for that "15 minute consultation". Any tests? Hundreds of pounds on top. Hm, so I decided to rather make a trip to Slovakia every now and then and see the doctors there...

You may say I should keep optimistic but I just don't know how. Nothing seems to work. Even strong antihistamines (Fexofenadine) work only occasionally and only few hours, and sometimes not at all. Some doctors will also keep saying "there's no cure" and "you just have to manage it", and I read horror stories of people who are "maintained" in semi-normal state using corticosteroids, antibiotics, in the worse case systemic steroids... I don't want to go down that route...

Dermographism - gentle stroke brings up a white line for about 2 minutes

One annoying thing is that people don't take this seriously. If you have a cold, fever and a chesty cough - that's obvious - you're being sick! But telling people you don't feel well because of itching may come hard to understand without the context. But people don't have time for a context in a everyday conversation, especially in UK, where every conversation starts with an absolutely superficial "you're all right?" . What should I say to that? "No, I'm scratching myself to death, how about you"? I guess I'm better off saying "yeah, surviving" - which is still true and takes care of it - and writing this blog post for the honest answer.

Perhaps one reason why people don't think it's serious is because I used to call it "eczema", a condition which is often associated with that small, "occasional rash and itch on hand". I used to have that kind of eczema. From my current point of view, I LOVED that eczema. Perhaps what I have now is still some sort of eczema, a super-upgraded version with add-ons and power packs. But when people say "eczema", they simply think of the first light version. Like the other day at lunch - I mentioned "problems with eczema" as a reason for my at-the-time weird diet, after which a chap next to me promptly leaned towards me, pointing at his super-minor barely visible eczema patch on a hand, saying something like "is it like this?", raising the eyebrows, the tone of his voice clearly indicating "don't worry bro, we're in this together". I guess next time I won't say "eczema", but rather "slow death by scratching", as Juro suggested when I told him this story.

Needless to say, my whole life has completely changed. I stopped doing sports as the sweat would bring strong itches. I ditched wearing all the clothes that's not cotton as not to irritate the skin. I've rejected holidays I'd otherwise look forward the whole year and even planning the rest of them is centered around having access to creams, special food and avoiding hot weather (and even then, most of the holidays this year were just too much suffering). I stopped doing Toastmasters speeches or recording music as I simply don't have the time and energy. And I certainly don't see or communicate with my friends and family as much as I'd like to.

Random picture from holiday in Wales where I scratch

Another random picture from holiday in Wales where I scratch

I think for many of you, this post will come as quite a surprise. Obviously, I try my best to hold myself together in a company of other people. Also, there are few better days and this is when I'd try to take advantage and be social. But there are also way too many shitty days and moments, which I just need to go through, one way or another. And I keep asking that typical "why me" thinking when will this terror end...

Yes, I am desperate and I'd like to ask for your help. Here's a link to a google document where I wrote up all my symptoms, history, things I've tried, put pictures. There is also a section around "how I can I help", mainly asking few questions (mainly aimed at "what the hell is going on with me"). .You may have a relative who's a doctor or a friend who had similar issues. Please share it with them. It has my contact details, I'd be very happy to hear from them. There's also a short version in Slovak and a short version in English, listing just the main facts.

And if you can't help medically - I understand,. I guess I'd just like to let you know: this is what it is. It may be a while before I play football with you, join you on an adventurous holiday or perhaps even before I meet you. Right now I need to sort this out and get a manageable life again. I used to have one, just a year ago. Now I am hitting the "publish" button with the hope that somewhere, there's someone who will be able to help.

In the midst of this hell I'd like to thank everyone who stands by me, cares and provide support and understanding - you know who you are. It may come difficult to imagine what amount of suffering this is, both physical and mental. It's easy to lose faith and sanity and It's just nice to know there's someone here for me.

Thank you