Category Archives: Uncategorized

my stroke Uncategorized

how much does my stroke cost me?

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I need money. as some time ago I wrote about on the topic how our National Health Fund cuts money for stroke treatment and I try to save for  new computer, I think about money quite frequently.

I decided the amounts I’m spending on treatment from my pocket. The information you need first is that I get about 750 zł a month(=ca. 170 EUR=ca.180 USD). It’s a minimal amount you can get from our National Insurance Company for  saving there for a lifetime.

I decided to count my  usual money spent on ‚aroundstroke’ things.

Well, here it goes.

  • My physiotherapist gets 70 zł/h=c.16 EUR=c.17 USD) She comes here twice a week. Not too much, but also not too little. Some physiotherapists in my city demand much more. In some cases hourly rate can be lower. As far as I know my neighbors pay much more for the therapist.

Lets count: 70*4,5(weeks in a month i think)*2= 630PLN=146EUR=157USD

  • my water massage for hand and leg. Both for 7 zł (with a discount. Normally it would cost 14 zł). I go there twice a week.

Lets count: 7*2*2*4,5=126 zł=29EUR=31USD

  • meds I can only estimate cause I  buy bigger cuantities at one time. I mean doctors perscribe sometimes for more than one month. That’s fair.

Lets count: it should be around 100 zł a month=23EUR=25USD

  • But lets count further. Some specialists i see for „free” (public health system), but some I see in private offices. There are nice surprises. Allergist and laryngologist were available publicly and in sensible terms. But there are specialists you have to pay. The waiting line or rheumatologist is just 2 years in my city in public clinic. Not everything is linked closely to strokes. But still, in some way for sure. Like last September I was sitting in hospital, but still i managed to pay for endocrinologist.
  • Lets count: average 130 zł/month i suppose=30EUR=32USD

 

  • and checkups. It’s easy to get referral from the doc for TSH and level of cholesterol once a year, and for tomography twice a year. But for some I have to pay myself.

Lets count: the averagely it would be around 30 zł per month=7EUR=7USD

Together is gives us 1136 zł/month=263 EUR=284. And i get only 750PLN=173 EUR=187USD. 

That sucks big time;) But there is nothing much i can do.

I could sell all my books, but i use my parents, struggling to provide for me. That sucks. And I haven’t counted cost of my brand new nutritionist. which will cost me like 400-500 zł per month. All of it is half of my mom’s salary.

Well, i guess you should be wondering why I don’t wait to get everything publicly. But believe me, it’s impossible. Some things would be possible for sure, but it would extend the time of my recovery or even make my condition worse. I want to go back to work and provide for myself. You know what I  mean.

 

 

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Top 5 of houseworks to exercise your hand

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In my opinion of course;)

  1. cooking – nothing is better than doing polish Pierogi (dumplings) or Indian chiapati (roti;p)

kolaż-pierogi

2. Hanging your laundry – with clothespin! Great for precise movements;

3. vacooming, sweeping – sorry for that! For me it’s best to use healthy hand only for helping sick one. It took time to learn that, but finally I’m here. Healthy hand is resting more, spastic one works more

4. Doing your dishes – a bit precise. Hold something, turn it, put something into something elase, decompose… it’s extremely hard with one hand!

5. Ironing. The thong that I hate doing and wasnt doing even while being healthy. Only before interviews. But it just must be good. Hand get’s stronger, but puting your shirt on ironing board is pretty hard and precise action, isn’t it?

Well, it’s my tradition to say: mooom, it doesn’t mean that I will love completing all the chores you want me to!

PS

My special number six. During communist era my parents bought somewhere plenty of pasta and not milled coffe, you know, in seeds. It was like a miracle. But they left it once in tiny room with two dogs.

After coming back they saw  disaster. Our beautiful dogs ripped all packagings and mixed all together. Well. If you know anything about communist Poland, you know, that it couldn’t be wasted. So my parents st there for hours playing in Cinderella game. Separating coffe from noodles.

It’s like an exercise you can get in rehabilitation centres:))

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Merry Christmas!

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My dear Friends!

merry christmas;)

For Christmas (or winterholidays)

I wish you:

healthy time

happy time

no argues over the table

no argues at all

loved ones around

disliked ones far away

much money

independency

no strokes

no epilepsy

no headaches

no food poisoning

no stomach ache

no lupus

no throat ache

no aches at all

peaceful time

party time if you want

good weather

snow

or, if prefered no snow

lot of rest

high cognitive skills

no loudness around

nails taken care of by them selves

time for yourself

support and understanding from others

all luck possible

15682052_10154250544033366_1335218391_o

and everything what’s the best. I really do. With all my heart. Thank you for being with me.

 

spasticity Uncategorized

Everything You Always Wanted to Know About Spasticity, But Were Afraid to Ask;)

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13367595634_3045c59fec_kAs you may know I’m taking part in a spasticity project. It is going on!

We would like to invite you ask about everything you want to know about spasticity. Or such questions you know answers to, but you think it’s important to appear on website:) The website is designed to be place of knowledge about spasticity.

All the questions you can send to our very friendly Nicole: N.Robinson-Edwards(at)stroke.org.uk 🙂 or to me, if you wish.

As far as I know all questions will be answered  by experts and stroke survivors.

I’m going to send my own questions for sure. Especially about pain managing, cause my feet hurts all the time…

And because I wrote this text on Friday: listen to my Friday song. For few years I wanted to sing it withe boys in the radio… 😉

my stroke spasticity Uncategorized

I watch spasticity being born

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physioand it’s so weird.

My leg hurts me just a little bit. For the most of time. It’s like bit sore/stiff and doesn’t let me to forget  about leg existance.

My toes (of left leg) are being pretty independent. They go up, as if they had independent life here, completely independent from my brain. And I know for sure that the brain causes this shit. It makes my lower limb be stiff. Be spastic.

Hey, braain! You are hurting me!. Let’s stop this nonsense, leave my feet alone please.

I’m afraid that it’s going to grow.

I’m looking for exercises , maybe stretches. So far I try to remember to have my foot straight on the floor. That the place of toes is on the ground. And not cramped, if you now what I mean… It’s problematic.

Mrs. Magda says i should pray that it doesn’t get worse. But I’m not much of believer and no prayers here. I look for possible solutionss. And become obsessed with left foot.

in my opinion Uncategorized

If something is clear for a person with aphasia, it’s clear for everyone

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source: flickr.comDuring the discussion about aphasia someone said that if something is clear for a person with aphasia, it’s gonna be clear for everyone.

I understand it. We were talking about website for strokies.  But many strokies have aphasia (some data I’ve read says that 1/3). And to tell the truth that site wouldn’t helpful to a person suffering from aphasia at all. How it could be if it was full of text and irrelevant pictures?

But it’s Internet. Despite the fact that in some countries (Norway for example, as a Norwegian girl told us) it’s obligatory to adjust websites to the needs of disabled, I doubt that someone was thinking about aphasiac people (such expression exists?) talking about these adjustments.

There are different types of aphasia, so let’s assume that our heroine is not able to read anything and speak. She goes to the Office in which she gets a discount card for trains. She knows what she has to do and more or less when she needs to go, but she’s never been there.

The place can be found on a John Paul II street in Szczecin (my home city). Information board (written of course) is put there between millions of other boards (I didn’t count it as I can’t count till million;p) It’s extremely easy to miss for person who reads and for our heroine impossible. Any remedies possible? I’m not sure… Companies use their logos. Polish  public offices have always same signboard – white letters on red background. There is not much difference between „The National Office of Controlling very dangerous things” and „13th high school”.

People dealing with aphasia have to deal with it. But it’s And I have a sad impression that he big markets are more aphasia-friendly than public offices, at least shops use logos and are pretty consistent about it. I don’t know. Maybe a wish of improving the access for another group is impossible fantasy, but till not a long ago ramps for wheelchairs in many places were also a dream. even a simple system of easy recognizable signs would be helpful (also for foreigners!)

wouldn’t it?

yes. I know that this is not aphasia friendly website. And I can’t do anything about it because I’m not a programmer. If I was a great painter I could paint some things… Using symbols is not that bad idea;)

*[click!]

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The importance of saying NO. Assertivness after brain stroke

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assertive I’ve always had problem with saying ‚no’. The bigger request you have the biggest possibility I will do what you want me to do. If you want me only to move ass to give you something I will have problems. I’m the altruist type I guess. That’s why one of my flat mates used to call me the good lamer (if she knew about last years’s adventures, she would call me the good hiperlamer;)

Now. That was not that good introduction to the topic I’m going to write about, because I’m not going to write about disadvantages of being good-hearted, but about the importance of ability to decline things that come.

Imagine that your family goes for one day trip. You plan to take a car, go for 200 kilometers to the sea. You know that road will be very though, there will be much sun and nowhere to hide, kids will be tired and bored, so there will be no rest for you. And you will come back very late.

Or that you get an invitation for a Christmas party from work

Or your brother asks you for  a help in translations.

Or your dadagain and again asks if you could go together for one concert.

Or someone makes you drink vodka (and you don’t want to drink)

Or, or, or….

I’m not saying that you have to say NO to everything. I just say that you can do it and sometimes it’s better to say NO/Not now/Maybe another time. After stroke you have even more right to think about yourself than about others.  
 
Me myself I go to parties like once a year. And I have to be assertive when the time of going out comes. There is no way I could stay long hours, till morning or till the end. The noise (it doesn’t have to be techno party, even few persons in the same room are difficult to handle sometimes), chaos… I cant survive for a long time:)  but often I have to put my foot down and despite (sometimes very cute) requests like ‚stay just bit more pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeee’. I have to go out when before I cross the line after which I regret going to a party/meting.

saying ‚no’ is sometimes easier than calming down the voice in your head filled with remorse. Today for example i said no to my mom when she asked me to go with her and work together and do some shopping. My parents have tiny business they sell dog’s and cat’s food and they drive a lot by a car. I said no, because in a car I feel lousy all the time and I have many things to d. After such trip I would have to sleep for few hours and I wouldn’t finish up them and for sure I wouldn’t be able to exercise. and I wouldn’t enjoy going to theater with mom. But still I feel remorse because mom works and I’m only writing, you know.

Challenges of communication, noise, stress, limited possibilities, slowdown… You have to consider everything before you agree to something. I find it very difficult. Lately I’ve had some bad experiences with things of ‚took’ kind. The walk was too long, the deadline too close, too many things to do over a day… Everything i say i don’t say to convince you that you should become a self-obsessed selfish idiot, but to show that we should consider many things things. It’s always healthier to be able to say ‚no’;) believe me.

 

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.