in my opinion Uncategorized

I, Daniel Blake – human vs. bureaucracy

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When I saw first minutes of the movie I smiled saying ‚oh wow, film about ZUS*’, but I didn’t really believe that the ZUS part will be that big.

*ZUS – Zakład Ubezpieczeń Społecznych, eng. Social Insurance Institution

I, Daniel BlakeSoon I found out that I was right and wrong at the same time. This movie is something more than a story of a guy  who doesn’t want to be broken by institution. It’s also about the guy who is just good person with warm, honest heart. And about a woman, who has bad luck and many troubles and tries to handle the best way she can. And about the fact that good people are going to spread the good no matter what.

Of course it’s gonna sound like a biggest cliché but I have to say that, the film consists of many Kafkaesque elements. Institutions are often Kafkaesque. Think about that.

Daniel  ismore or less 5o year old guy after severe heart attack. His doctor strongly forbids him to work, but the fact that he can walk 50 meters and take something out from the pocket disqualify him in the eyes of insurance company. He lacks sufficient points from silly questions which disqualifies him in the eyes of The Institution. As there are strict procedures, he can’t appeal as long as he doesn’t receive a phone call confirming the letter he got. Going to The Institution himself  makes him even more frustrated.

Daniel tries to make his way in the reality of absurd in which he is forced to seek for a job he can’t really do, just to have any kind of allowance. He is forced to use computer which he can’t use, he is struggling with office workers who have to follow strict rules that don’t match reality. Our protagonist has to be fighter, but he doesn’t want to be one. He just wants to be treated fair and with respect as he is honest for others.

It’s just one of the aspects of the movie, I’m not even sure that it’s the most important, but in his story I see my story (these months without any income!)  and people I know from internet. It’s hard to express. The movie triggered the discussion in the UK, many people say that they know this theme from their experience, others can see the cruelty of bureaucracy for the first time. In my opinion the picture in the movie is milder than in reality. It doesn’t depicts well the constant fear which accompanies people who struggle for living while being sick.

Fear is our companion. Fear of second (third in my case) stroke, another heart attack, financial security, fear of evil commission… I couldn’t sleep at nights when I was waiting for my commission. I knew that I’m not able to work. What should say my friend with multiple sclerosis and after stroke which found out that commission thinks that she is able to work in an office? 😮 I believe her that she can’t. and i really think that her commission was heartless. She is like Daniel Blake (and me) – doesn’t want benefits for life. She wants to go back to job, but it’s impossible now. And there is a fear.

what should say my another friend who after another stroke is more and more disoriented and can do simply less things? She can’t sleep at nights either. Every commission in Institutions which should be here to help is so stressful for her, because she was mistreated, misdiagnosed many times, she was also badly treated by members of commissions. She can fight but I see her loosing faith. Sadly you can’t buy faith. In every second message from her I see these words. „I’m afraid”.

This reality is so difficult for most of people in need, but especially for these with cognitive problems. I guess I should feel lucky as I was in hospital after second stroke at a date of my complementary commission. First one couldn’t decide. Able to work or not able? Well, my second stroke helped them judge.

In theory we shouldn’t feel as suppliants in front of the offices. It’s our money which is given back to us. Still one of the phrases that i find on my polish blog, people can find me in Google by this sentence…

boję się lekarza ZUS = I’m afraid of the doctor from ZUS

how horrible is that?

Daniel Blake is true not only for Great Britain. Details may vary, but will be true for all countries in which a person is a number in the system.

It’s also s true emotionally.

It took away something like 3 liters of my tears.

I recommend it to all of people who

a) like good cinema

b) want to find out the ugly truth

c) want to understand less fortunate ones

‚d) don’t want to feel alone with their problems.

PS

there is also moving, not less important!, Katie’s story. It’s also important. the friendship is important, everything about this movie is important.

my stroke stroke survivors Uncategorized

My huge success. Happy World Stroke Day!

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I was thinking about it a lot. I knew that for World Stroke Day (29.10). Maybe even video… But I’m so tired that I haven’t though about anything sensible.

Among others, creativity is not my strong side lately. So I decided do something else. To say proudly that I’m a journalist again and to tell you about some things around it event.

If you want to see my article, click here. 

I’m writing about it because of few things.

14924850775_a05bfebd73_oOf course I’m very proud but it’s not only about it. I wanted to say that wasn’t easy. Even process of writing itself was very tough and I even stopped rehabilitation (seriously!), I have constant headache and I’m stressed out of millions of reasons. Maybe my work is not unassisted enough, as my friend (the best editor ever) edited my text (she says that not much, but still..). Maybe the text is not good enough. Maybe I will not send next text on time. Maybe they will thank me for my help and I will lose internship. Maybe, maybe, maybe…

It’s just internship, they are not too demanding. But still I’m full of fear and doubts. But let’s go further.

I sent CV to the Foundation just before second stroke. When they contacted me lately I had millions of doubts.  But I wrote the text, noone read it, I was accepted without any help. it wasn’t easy for me, but I did it! But you know I’ve been working for it since 9th of May 2015, when I published my first note on m Polish stroke blog, www.lewaczka.pl.

I write daily. I write here, on my Polish site, I write private things just to exercise. I’ve never been so hard-working in my job I have to admit:) But it’s like 1,5 year or daily rehabilitation. It didn’t come over a day. And I wouldn’t be so determined if I didn’t know about my readers. When I get messages like this I’m over the moon.

meaning: thanks for another motivation for me. I've had my elliptical trainer for 2 years, but now I'm feeling bored with it. But from now on I'm starting training again:)

meaning: thanks for another motivation for me. I’ve had my elliptical trainer for 2 years, but now I’m feeling bored with it. But from now on I’m starting training again:)

Because I see it’s sensible. And after messages like his

i wish you fast

meaning: I wish you quick return to your home

it’s so moving for me that my eyes sometimes get wet. I can’t help it.

And when you share your stories or ask for help, i feel more than honored. And you know what – without your support, without support of my family and friends, this article wouldn’t have happened.

But ok – let’s add something bitter to this sweetness;) I’m fully aware that many people after strokes will not regain full functionality.  I’m somehow convinced that even me myself will not recover fully. I might look well, but this ‚might’ thing is nothing in comparison the ‚healthy’ i remember.

Some of us may struggle or regaining something really basic, I don’t know, like speaking or well balance while getting up. And I’m feeling guilty sometimes for talking so much about working out and faith while I stood up and moved my arms so quickly. But I see that good expectations management can bring plenty of good things to our lives. I always joke about my future literary Nobel prize, but I don’t expect it. It’s nice to dream though. It’s important to manage your goals and expectations well and always dream about bit better. The way is long and hard, and made of thousands of small steps. We go further with these baby steps, and feel this is slow. But when you look back on all the steps you’ve taken you see that road was super long. And the end is not even in sight. And when I think what I’ve achieved, it’s like a huge thing. Not only the article. Also being able to sit without any help. Walking by myself.

After second stroke (shame on it!) I feel rather depressed and full of doubts, but it’s temporary thing, not to be expressed loudly, cause I know that I’m not in a position to complain. In general there is some hope for me. And for all of us:)

Yeah. Now I’m sending all of you (all of us?) plenty of warm thoughts for a World Stroke Day. I wish all good, strokeless life, And if stroke is already here, I wish you no repetition:) And with these words I finish this exalted text and I’m going to Spanish conversation.

Un buen dia! have a nice (world stroke) day!

loosing weight project my stroke rehabilitation Uncategorized

It’s mine! Why this one?

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I was skeptical towards putting large, unnecessary exercise machine  at home. Elliptical trainer seemed to be unnecessary whim which  a) clutters half of the house, b) is easy to substitute with running, walking and such things. Even motivation from getting back part of the cost from National Disabled Persons Rehabilitation Fund (PFRON) wasn’t enough for me.

And then I was forced to use it on one of my rehabilitations and actually fell in love. It took 10 minutes of coordinating my hands and legs, or left side and right side (it wasn’t;t easy, I must say)> Silent, not too big, machine, I was waking on it with the speed higher than my running average speed, during just 10 minutes I was sweating more than during the 1 hour march. And for the first time from ages I actually felt muscle sores (which I really enjoy having).

In the end me and my parents found the machine that suited both our needs and funds. it was shipped to us and my mom put it together during one afternoon, I stood on it and…

elliptical-trainer, cross-trainer
I felt differently, the cross-trainer felt differently:( Coor dinating part went just well, only about 5 minutes;) After that the hard part came,  though. After just one minute I felt that I’ve had enough. After 5 minutes I  took a water break. I thought, oh come on, I’s shame to quit before 10 minutes. So I walked slowly, and finally made it till 20 mins and I took shower. It was just tough. The next day I had two workouts, in the morning and in the afternoon. Snail pace, I would say, but I managed to extend workout time. And again I fell in love in my brand new machine. For past week I made only two days cross-training free, one to regenerate muscles, second was yesterday (cause Mondays are Zumba days) and I’m happy. I’m not saying it’s easy – actually it’s very hard for me – but somehow I believe it’s effective.

Anyway, I’m talking about my beloved machine, but I failed to explain what is it. Let me fix this mistake.

An elliptical trainer or cross-trainer (also called an X-trainer) is a stationary exercise machine used to simulate stair climbing,walking, or running without causing excessive pressure to the joints, hence decreasing the risk of impact injuries. For this reason, people with some injuries can use an elliptical to stay fit, as the low impact affects them little. Elliptical trainers offer a non-impact cardiovascular workout that can vary from light to high intensity based on the speed of the exercise and the resistance preference set by the user. (www.wikipedia.en)

Now that you know it, I will tell you what benefits I’m expecting for myself.

Rehabilitation of my left hand, because during training you use also hands. You are forced to bend your arm and also straighten it to some extend.
Improving my coordination. Do you know how normal walking looks like?


don’t mind polish talking. I just meant to show you this coordination issue here. You know, one of the features of proper walking is alternating your walking (I really don’t know proper English expression), which is simple thing, that you move forward your left arm and right leg at the same time, same thing with your right arm and left leg. Their are in pairs, I would say. For me it wasn’t so obvious after stroke. I couldn’t master the proper pattern. Sometimes I was even immobilizing upper parts of my body. But elliptical trainer enforces proper coordination. And that is pretty great.

3. Increasing my capacity and stamina. As I lack both of them, now it’s quite important. Believe me, I’m not talking about marathon running, I feel  problems while going to the nearest bus stop too. I feel problems on stairs and everywhere. That’s why I need to work on it in comfortable environment. My Machine is going to help me, at least I hope so.

4. Loosing weight. Or, in my case, stopping gaining weight:D

So far I still moan daaaaaaaaaaaaaaaaaaaaadd, either I’m more sick than before, or I have worse condiiiiiiiiitionnn. And my dad says it’s both. As you are more unhealthy you have worse condition. Ehhh, smartie pants!

I know that this kind of training is not for everybody, but I know also that there is simply no exercise suitable for everybody. I’m just really convinced that my machine is a good  choice for me.

loosing weight project my stroke Uncategorized

The hormone odyssey continues

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diet

In my first cortisol blood test everything  seems to be fine. Other basic hormones seem to be fine as well. I have clean thyroid, beautiful ovaries.

If I forgot about these stupid strokes, the landscape of my health would be pretty beautiful.

But. Someone told me that daily fluctuation of cortisol can be huge and it’s worth to take further tests. We will dig further, Ihave hospital scheduled for February (it’s not so long, but very long at the moment. I’m so eager to find out what’s wrong with me). So fa, Ihad only overnight dexamethasone suppression test. It works like that: you take a pill at certain time during night and the next day in the morning you are just going for blood test on an empty stomach. At certain time too;)

My endocrinologist said that it’s quite ‚unstable’ test so it’s better to do it in a good lab. She recommended me two labs in my city:)

Now we will be checking all feminine hormones. And everything else.

You know, the brain stroke is a one thing, but my weight makes me veery sad. It’s possible that I developed insulin resistance, of course. It leads to diabetes, true. And diabetes leads to stroke. And three strokes are too much for me.

Well, as I’m neither hormone expert, nor can I focus at the moment, I should shut up for now. I have strong impression that my readers have bigger knowledge on hormones than me. Of course I will keep you updated on this:)

 

 

loosing weight project

meet my Fat Lady – how to motivate myself to losing weight…

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gruba baba

This  money is my Fat Lady. She is a handmade money box. From salt&flour dough (does English have the name for such thing? Polish has…;) She will be painted of course, but she already eats money. She has her meal after every day in which I don’t eat sweets and I don’t touch Coke.

I’m not sure whether I’ve already told you, but I’m addicted to Coke Light. Or Coke Zero. For sweets only my mom wouldn’t give me a single penny, but for sweets and Coke…;)

Anyways. I’ve been off the coke (Light, Zero) for the first time from immemorial . It’s been 5 full days already!  Hurray (?) I miss it so much…
My mom, the Fat Lady feeder must be glad.

I miss it.

She pays.

I cry.

I had to mobilize myself to leave the leavings of unhealthy lifestyle because  I still put on weight. I’m more and more convinced it’s all about hormones. Because my fight is a fight not for loosing fat, but for not crossing a magic line of 100 kilos. And I know that it’s not about being more sinful than my friends, because being active and saint doesn’t let me lose even one gram of my body weight. Something has to be wrong. Hormones. Or I have the slowest metabolism ever and my daily demand of calories is like 700 kcal. Let’s hope it’s not that.

I haven’t accomplished any of my goals yet.

PS

I’m lying. It’s not like I’m not able to loose weight at all.

Exactly a year ago I lost 3 kilos. But I was running every day or once in two days. And I was walking like 10-17 km daily. And I was cycling. I ate well, not too many sins. Well, I’m not able to do it again. 2 km walk is a lot for me now.

loosing weight project my stroke rehabilitation Uncategorized

If you want laugh your head off, go for zumba class after stroke

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One psychologist told me once „go to zumba class or play instrument. It’s so useful for synchronising your cerebral  hemispheres”.

Finally I went for this Zumba thing. And once a week I’m synchronising myself.

What is this synchronising thing about? 

As we all know our cerebral hemispheres are responsible for different things (we call it leteralization) Right one is more creative and intuitive, left is more logical and analytic side, it is said. And it is said that our brains function best, we are the smartest, most creative and we fan focus best when our hemispheres are cooperating flawlessly.

even if it’s not an miracle medicine for my issues I think that trying to synchronising my brain can’t do any harm. That’s why I play piano every other day and…. I signed for zumba class 

That is the moment where you can fell from your chair from laughter. Because I feel like that:
mis

when I should feel like that:

balet

Zumba is kind of fitness dance. Energetic and fun. But. While my group goes three steps right, I manage only one and I don’t have time to move arms;p It’s so hilarious. Frequently I must stop and laugh at myself.:D But I hope that it will get better. Remember, practice makes a champion. Step by step. Poco a poco. Maybe finally I will use my hips one day, because so far I’m just one walking (dancing?) stiffness which can’t move two body parts at the same time:)

But I hope it will get better, both my grace and my brain and one day I will be able to work normally, full time. And I will be able to focus on something and dance like this man:

Of course classes are tough for me and for whole day I’m preparing to them by taking rest and obligatory nap just right before class. And after Zumba I don’t do anything, this coordination trening is in a way more demanding for my brain than for body. I rest, watch something and go to sleep. It’s all so tiring. Add the noise (some call it music;p), people and training and you will get the nightmare of every stroke survivor. But this pain brings me joy:)

And you know what? Me, mom and the friend are laughing and have un. We aren’t skinny type (rather opposite) and I’m proud. Of each and every of us. For me it’s because literally month ago I was learning to walk like a human being not a little penguin penguin and had to focus on balance very much. And now I try to dance! And I almost understand Spanish lyrics:))

PS

Of course that i would love zumba help me to loose weight, but i have very little faith that anything except doctor can help me…

stroke survivors Uncategorized

at least not impossible

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raftingWe are having a coffe break and my new friend shows me a pic.

Few people in life vests and helmets are rafting in canoes, you know, such an impressive, extreme and impressive.

Nava (points to the pic): this is me, and this man behind is paralysed. And this is paralysed too.

Me (being in a state of mild shock): Extreme. So it’s possible.

Nava: Well, it’s not impossible.

Courtain. And that is a thing I’m going to remember.

 

in my opinion my stroke spasticity Uncategorized

Frankfurt – short, but long report

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As you might suspect, traveling after stroke is not easy. Actually  it’s pretty tough.

Day one

Airports are overwhelming like supermarket before Christmas. Even healthy people can get confused, for stroke survivor it’s just too much.

So many little things happened. For example i bought newest Harry Potter in German, not English. You know, ich spreche Deutch ein wenig, I speak German a bit, but by the way I would gladly sell it. Anyone? Gelegenheit! Great deal! Okazja! Promoción!.

hotelOr I was standing for few minutes in front of the sign saying „ausgang/exit” and I still had no idea how to get out from airport… Luckily my driver (yes!) was a patient person and took me to the hotel. Where i had room reserved, for a bad surname;p but it’s ok, I’m a hero and I sorted everything out and I could take show, see welcoming me Haribo gummy bears, get dressed,  buy coke zero, drink a coffee and go to dinner to meet everyone:)

I was regretting I had been after long trip and not in the best shape because of that. Really. And I hope that i didn’t behave like a complete churl or bighead, I’m afraid  that i might have.

The funniest point of the meeting was this general welcoming. Chit-chatand

[curtain]

Jelka: Hi, I’m Jelka from Slovenia.

Me: I know, we’ve already met.

Jelka: …:)

Me: In Warsaw, like a year ago.

Jelka: aaaah, I remember you now, and your presentation:)

Manuela: Haha, me too! And your presentation!

Alvaro: Well, you are  this bloger.

Me (pretty scared): eee, how do you know?

Alvaro:  I just know:)

Me (very scared I’m taking two steps back): I see that I’m pretty fameous now.

Alvaro: I think it’s ok:)

The dinner was very nice. I met few members-ambassadors a bit better and I have to admit that we all seemed tired.

We spoke about life, strokes, our experiences, prostitution in Germany. It was e

Extremely nice, but I must admit that I felt relieved when we could excuse ourselves and jump into the bed, without even cleaning  face.

I promise to give you insight into stroke-realted things we discussed, but I simply don’t want them to dissapear in the other things. Each issue-one article. Deal? 😉 But now I just have to announce my new goals. a) visit water bar in Munich (they have different kinds of water;p It might be alternative for my „un cervesa, por favor”)  b) visit Weihnmachtsmart on a frozen lake in Hamburg. It will be perfect place to drink my Gluhwein (hot wine). If I break all the bones and die, at least I die laughing;P

During the night I found out my king-size bed is actually two smaller-size beds. I found it quite suddenly, while being partly on the ground. But! on the bright side I didn’t kicked bedsheet of my bed, mom would be proud.

Next morning after breakfast our classes;p  (all right, Board Meeting) began.

And now I know what it’s all about.

Company Merz, which is one of the fundaments of the project, is the producer of botulinum toxim of the new generation. That’s a first thing. It’s also intrested in CSR I guess, and it came intxo cooperation with  SAFE (Stroke Alliance for Europe). They decided, as we say in Polish, to join pleasurable and useful 😀 and take care of spasticity in a more complex way.

I mean. Merz representatives looked quite confident while talking about their research (very interesting) and their belief that this project actually can help in a problem of spasticity. They convinced me that it’s not (only) about selling their product (which would be sold anyway;p) but doing a good thing from which more than 9 members of panel can benefit.

For me the most interesting thing were results of their research on spasticity. These were shocking and easy to believe at the same time to tell the truth. It was like confirmation of my intuitive believes on spasticity. In a great shortcut I’m presenting the most interesting for me information. I will write more on these in separate notes as each and every of them deserves to get my full attention. Well then:

  • many of people suffering from spasticity don’t even know the term „spasticity”. How they can search for relieve then?;)
  • Botulinum therapy can be satisfying for some reasons and disappointing for others.
  • Many patients never heard about spasticity from their doctors.
  • Main barriers in the access to botilinum therapy are bureaucracy and not enough amount of injection devices.

And you know, despite having a feeling that I’m from the third world of stroke treatment, I see that we all have same problems all over Europe. Every country is lacking the individual approach in therapy and towards a patient. Like everywhere people after strokes could be pampered more;)

I’ve felt a bit weird when one of the company representatives  asked me why I haven’t tried therapy with botulinum. I answered, but if it had sense, I still have no clue:D… I don’t really know. The truth is that I don’t know too much about botilinum therapy.

If you are afraid that the project will be like advert of the pharmaceutical company, don’t be anymore. Actually I felt the same way until I realized that both campaign/website and botulinum therapy are well indefied as the means to a happy end. In the end we will get a nice and well adjusted source of knowledge about spasticity, useful for many people (including strokies  of course) and helpful. And it will be translated to few languages, including my lovely Polish;) And if Merz doesn’t do that i will make them remember, that i have only one fist and leg spastic, other can fight for our right;P

It seems that knowledge about spasticity has to be distributed in many ways as even doctors are not well informed about it. Even they could use some more knowledge. I’m very happy to be a part of the project and not only because I had amazing food there:P

I’m extremely tired. 2 days of an intensive trip&working on project, then 2,5 od writing, translating, but… I’m the best faker (I fake my physical well-being extremely well;p), so hopefully noone knew that I want to sleep in every place I’m in:)

Enough of it. You deserved a short photo relation.

This is what I saw in Frankfurt:

frankfurt-lozko frankfurt-ekran

surname with some typos, but still nice:D

frankfurt-konfa

 

And these things I dint…

frankfurt-am-main-1447004

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

frankfurt-am-main-2-1452688

You know what I mean;) And I hope these photos are from Frankfurt am Main:) Ehhh… It’s been long time of writing. Now bit of the rest. I really really really really really really need this:)

[click for polish version;)]

my stroke spasticity stroke survivors Uncategorized

Stroke survivors panel – two days, million challenges

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in the times that hitchhiking seemed so easy... not so long ago;)

in the times that hitchhiking seemed so easy… not so long ago;)

Tomorrow I’m going for long anticipated trip.

I’m going to Frankfurt (am Main!) for the europe’s stroke survivors panel.

As I was telling everyone on my Polish blog… We re going to inaugurate there one project regarding spasticity. To tell the truth I have no idea how it is going to look exactly, but I really hope that main beneficiaries will be you, not the sponsor;p

I was recomended to the panel by Fundacja Udaru Mózgu (Polish Stroke Foundation). thanks to my first blog (click;p).

I’m not a member of any stroke association, including FUM, but they seem to like me there.

Of course my second stroke (yeah yeah, from 16th of August) became a huge threat to my participation. But i thought about everything very carefully and i decided  to go.

Of course I will be:

  1. very confused all the time
  2. tired like marathon runner on the 41st kilometer
  3. feeling nausea like 24h a day
  4. all the time stressed

but

  1. happy that i’d doing something work-like
  2. independent
  3. travelling:D
  4. in Frankfurt

Well then. Keep fingers crossed for me. And for whole project.

I will be back tommorow, so you will not miss me too much. Thanks for help! and hasta la vista (;

 

 

Uncategorized what have I learned after stroke

What have I learned after stroke (I): websites!

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Above all I learned how to make simple pages in WordPress, and thanks to this ability you can read my blog. First one started just 4 months after brain stroke, I was pretty good student of my friend;)

My StrokeTales is on my own domain, which I bought, I also bought space on server, I did everything by myself here!

Maybe you can say there is no great „WOW”, but hey, for me it’s a wow. It’s indepenent and complex work of art. And I still want to improve it, to make my site better and more beautiful:)