My brain stroke blog » Blog Archives

Tag Archives: everyday life

Uncategorized

I try to relax my left hand

Published by:

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

Published by:

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

Uncategorized

What were you doing when your stroke happened?

Published by:

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

Uncategorized

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

Published by:

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?

Published by:

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!:)

Published by:

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

Published by:

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!]

Uncategorized

The importance of saying NO. Assertivness after brain stroke

Published by:

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.