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My third rebirthday. Annual entry for stroke anniversary:)

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Today I have my third rebirthday.

on 21st Dec 3 years ago I had a brain stroke. That means that I’m at the same time 28-year-old, 63-year-old and 3 years old.

rebirth, stroke anniversary, hospitalEach year I feel very weird on this day. I really feel that this date is important to me, even more than my birthday. celebrating the day you were born, its something natural, but I didn’t choose the way of my growth, right? My mom says that I didn’t say ‚no’ to food, but it’s not like I was choosing it. After my brain stroke, I conducted my life consciously to the point that I could. From the diaper to the place I’m in.

Last year was a bit peculiar to me. It cant be related in few words, so I’ll leave it until the new years eve;)

Today I’m gonna be traditional. I’m gonna tell you the ways my life changed in a good way. Areas that are better now.

As you know, the life of a strokie isn’t that great. Frequently it seems to be hopeless and horrible. But there can be found things that changed for better. I truly believe that each and every one of us can find at least one such thing, even if his or her life is miserable.

Well, I have to admit, that few things changed for worse last year. surprisingly I feel weaker than last before. Strange. This year I haven’t had a stroke, the year before I did. how to explain that?:o

so many things are going for worse, I’m not gonna focus on them because there are plenty which changed my life for better. Since last year I’ve noticed a big growth. I’m letting the list expand, even if it grows that big, that it’s too long to read.

so.

what has changed in my life for better after stroke?
    1. I take better care of myself,
    2. I’ve met few new, nice people,
    3. I’ve let go few people, who were bringing me pain. emotionally it’s a great thing for me,
    4. I’m less stressed with small things,
    5. I don’t have a stressful and horrible job anymore,
    6. I’ve learned knitting,
    7. I quit smoking,
    8. sometimes I’m rested,
    9. the card ‚you know, I’ve had a stroke’ still works for me,
    10. I know why I’m oversensitive to sun,
    11. I have a PFO fixed,
    12. I’ve I’ve found a new, great psychologist and i feel that she’s the one,
    13. i’m fixing, one by one, everything that’s broken in me,
    14. i have the first thing in my life that i’m proud of. I mean my blogs.
    15.  My blogs give me satisfaction. It’s a really nice, previously known feeling.
    16. I have the energy to learn new things,
    17. I’m overcoming my boundaries and things I’m scared of,
    18. I’m more peaceful than before. I feel less irritated,
    19. I’ve learned Spanish. I can communicate in this language. And I learned it by myself,
    20. I’ve lost 15 kilos,
    21. I don’t have to give my granny rides to shops. Not being able to drive sucks, but on the other hand, I love this excuse,
    22. I see that I’m helping people,
    23. My hair fall out less,
    24. i’m thinking about myself more,
    25. I started dating,
    26. I have a small collection of figures of goats,
    27. I understand people better,
    28. I’m not that worried about money. I know its very horrible, as my parents are providing for me, but on the other hand, before I was counting each zloty with a fear, and now I’m still counting, but without fear,
    29. I get long depressive states less frequently,
    30. I get rid of stuff rather than I collect them,
    31. I’m learning to have an order around myself,
    32. If its even possible, I’m closer to my brother than anytime before,
    33. again I appreciate being outside,
    34. I have the hammock!
    35. I can do things in WordPress better and better,
    36. I have ‚my own’ business. It goes badly, but it’ll be better. one day.
    37. I have a feeling that I’m more active.

Comparing to the Polish version this list is shorter for two points;)

But still it’s impressive, isn’t it?

I like the points about being proud of myself, as for the first time I really feel pride and satisfaction. It’s a new, great feeling to think about yourself well. For a change;)

Maybe you should try to think about such list yourself? Even in despair, we can find something. For me, the first thing was realising in a hospital that I have nicer skin.

It started with one. Now list is that long!:)

loosing weight loosing weight project my stroke Uncategorized

Lose that weight, Kasia! I’m 15 kilos smaller:)

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I would do (almost) everything to have a better recovery. As we know, there is no ‚magic cure’ for regrowing brain (fingers crossed for stem cells therapy!), we have to just take the best care of what’s remaining and work hard to regain/improve what’s left.

For me, big weight isn’t simply an aesthetic issue, its connected to health and preventing next diseases.

I mean: by obesity may not affect many things, but sooner or later it will.’

So i’m losing weight. 15 kilos so far!:)))))))

you can sing with me. Wow! Wow! Wow!

It’s a hard work, it’s a daily struggle, but the reward is huge. I’m not going to complain then:)

 

Life’s been crazy recently, so I’m bit absent. I think i’m going to be back with you soon.

My Polish blog is doing well, but it’s hard to find time to translate things… Ill try harder. I promise!:)

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I try to relax my left hand

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As you probably know, I have slight spasticity on my left hand. Not big, but it still sucks.

I try to relax it in a totally amateour way, but it doesn’t really work. It was much easier under caring eye of my physiotheraphist. Being lonlier doesn’t benefit, to tell the truth. I admit: my attempts to make my hand loose haven’t been that successful, but attempts to make it more normal visually and funcion better have been working pretty smoothly.

For example: when I’m knitting I’m careful not to clutch my hand too strongly. It makes me knit slower, but, thanks to this, hand DOESN’T HURT. Yaay!

Same thing when I try to knit (I’m struggling to learn, so it’s difficult to relax, yet I try!)

When I type I try not to point forefinger and middle finger into the sky. They are shaking a bit, hurt, but this way they are being accustomed to more „natural” way of behaving. Continue reading

my stroke

It’s first anniversary of my second stroke. I still haven’t made my peace with everything

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Two days ago I had my first rebirthday of my second stroke. Lil’ stroke – it was waaaay smaller than the first one. Lil’ stroke – it hasn’t destroyed every single thing, only slowed down the process of healing, and added some inconveniences.

The stroke that didn’t change my life completely, but showed me, that my life isn’t normal. But who cares: I will work out everything. At least I hope so:)

In some ways, this stroke changed every single thing, in others – nothing. For example, I have like 99% of certitude of the cause of my strokes. I’m not scared and I don’t feel anxiety caused by Uknown.

But I didn’t mean to write about it. I want to express my feeling about living with this shit. I will focus on emotions, which have been a wreck for past few weeks. Or months?

Don’t get me wrong, I’m not unhappy. Ironically, I have a feeling that my depression problems got smaller after my strokes. This year I’ve had few pretty well months! Despite that, my emotions have been shaky. Like a swing, the hugest swing in my life. Minor things drive me crazy, mad, sad, or happy, ecstatic, loving… If you know what I mean. Continue reading

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What were you doing when your stroke happened?

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What were you doing when your brain stroke happened? I, myself, didn’t think about it much, but people keep asking me. And suddenly… I saw one topic on the Internet forum where strokies were sharing this information. I collected more, reminded myself stories from hospitals, and my readers. List surprised even me. It was diversified. And long. Now I am able to present thrilling collection which seems to scream „come on, it can happen anytime. Anywhere. To everyone”

let’s go then.

I had a stroke: Continue reading

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Gallery of the faces: I called. It was marvelous!

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I have a friend who is a fellow strokie. I might have mentioned him before, but I’m no sure. He’s a young French guy who suffered the stroke in Poland.

His stroke caused a big number of problems, such as aphasia, troubles with moving, spasticity… But this guy is determined to get better and gradually improves his health. Moreover, he does good things to the disabled community. He even plans his own blog:)

When we speak on Skype, he seems to be like me. My first impression was like: if I didn’t know, i would have thought that he had stroke problem. Normal boy, maybe looks for English words bit longer than a normal, fluent speaker, but you know stereotypes about French people & English;) my small experience shows that in France it’s easier to find a Polish speaker than English speaker. Anyway;) Continue reading

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.

 

 

in my opinion my stroke

If you’ve ever thought how stroke feels like… Happy new year!:)

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in my humble opinion stoke is like the worst hangover you can imagine. Which lasts and lasts and lasts for too long…

your are mumbling instead talking

you can’t keep your balance

light and noise are like millions of needles which stick into your soul

this headacheeeeeeeeee

you are so tired

and so poor

world seems to be unfair and full of evil

you can’t control your body

you can’t swallow or you can’t even look at food

But this hangover doesn’t leave you after a day in bed. You have to work hard to mineralize its effects.

I’m writing abut it for few reasons. First: I want you to feel it a bit more. Secondly: I want to express that I’m happy not to have hangovers anymore;p Third thing would be wishing you

to not have any hangover-like symptoms,

I wish you happy 2017. I hope it will be kind, veryyyyy healthy and happy. I hope that you will have like millions of dollars and all institutions will have stay away from you. I hope that 2017  will give you love, joy and friendship. I hope that government will not piss you off, bed will be always warm, and headaches will keep away.

Dear 2016, fuck off. You weren’t too kind for me, for the world also, to tell the truth. Few nice surprises will not recompense me all the diseases and hours of doubts. I’ve just kicked  your butt and i want inform you that my delicious champagne (below) is going to bit you up. Ok, let’s face the truth: 2017 doesn’t have a difficult task to do;)
hello kitty champagne
PS

lately I’ve been whining a bit too much. My first new year’s resolution is to stop it. Good one, isn’t it?

 

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.