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epilepsy my stroke Uncategorized

I had a fantasy of driving with a driving instructor

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And I dropped this splendid idea.

lefthandLately, I’ve sat behind the wheel of our car. My brother encouraged me and, I guess, he’s been regretting this move till today.

I was supposed to drive about 20 meters and park. Nothing complicated?

You couldn’t be more wrong. I just forgot how to use a car. I forgot about the existence of accelerator. Actually, I think that I KNEW that something was missing, but I didn’t know what.

Anyways. After a while, with the great tutor next to me, I started to drive. And I parked.

Then I had an idea: what about the supplementary training of driving? Not to come back on the roads (epilepsy…), but for fun. It would mean driving with someone, who could stop the car if necessary.

My fear is strong. would brakes save me from such thing?

And remember, that my TIA (ministroke) happened in the car.

I’m scared. So no driving. No driving until I’m sure about being safe from seizures. Let’s wait and see.

my stroke stroke survivors

Insomnia after a stroke – our common trouble.

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Well, unfortunately. Stroke survivors, in this sphere, are in the doghouse too. Insomnia after a stroke is more common than among healthy people.

Who would have expected? ; )

You know what? I am writing this text at 5 a.m., so there is a grain of truth in it. : )

It`s our tough luck. At last, you have a little time to sleep off toils of life after a stroke and over half of us suffer from insomnia. Studies have shown that stroke survivors generally:

  • fall asleep with more difficulty (mememe!)
  • wake up more often (also me!)
  • suffer from a lower quality of sleep (probably me…
  • fall asleep for a nap harder (is it me?).

Ok, I admit. I had problems with sleep before the stroke too. But periodical. Now, if I sleep through the night, I jump (mentally of course ;p) with joy.

bed, łóżkoThe studies mentioned in this article, unfortunately, indicate that stroke survivors suffer from this problem for a long time.

Obviously, insomnia lowers cognitive skills of learning, remembering, orientating in space… Of everybody. But forgive me – stroke survivors have more serious troubles with it. Just let me haggle.

Insomnia is a nightmare also for the „healthy” (well, insomnia is an illness too…). Everyone who has happened to sleep badly a few nights in a row knows what torment it is. For a person after a stroke, it is even doubly harder.

Why? Because our brains and bodies use enormous amounts of energy to learn various things and function normally. And everything rebuilds and rests during a sleep.  But lack of a (good) sleep, unfortunately, allows neither to regenerate at night nor to rest properly.

Perhaps it is another brick for just being sleepy during a great part of a day. The studies also indicate that, damn, insomnia after a stroke causes more difficulties in taking naps. Continue reading

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Well… I got a job. I lost a job. That’s life

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lefthandNot easy come, but easy go. I`ve lost my job.

Exactly 3 years and 5 months after the stroke I took my first job after the stroke. Almost exactly 3 years and 7 motnhsafter the strome I lost it. My 3-month contract for a trial period is not going to be renewed. So my first job after a stroke did not turn out to be such a success as I had counted for.

What went wrong?

Was it a false start or had I waited too long?

What was a obstacle – a hand or concentration?

Too many naps or maybe too few?

Was it me who failed?

I would like to have answers for even a few of these questions.

How do I feel?

Well, you may expect that not really good. I just feel that I disappointed myself. And that I did not manage. It may be true and false. I see a lot of fault in my failure on the firm`s side. But let`s be honest: if I had been a worker of the year, I would probably not have lost this job. If I hadn`t made mistakes, they would not ave written I made them. Simple things. I am analyzing everything and my head is unfortunately full of questions as well as reasons, arguments, words both comforting and blaming me, the firm and the whole world.

I have a sense of failure. I would have it after being fired from any job. It`s not something I could ignore by shrugging arms. It just isn`t.

I was obserinv my progress at work. And I am really glad with it.

It`s turned out that in my case job after the stroke is not impossible.

But it`s terribly difficult.

However, I had not been able to do more.

I hope I will not look for next job for another three and half years.

 

my stroke stroke survivors Uncategorized

life after stroke – conference meeting

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Again crazy week with the even crazier weekend.

I think that I should be prepared for unexpected by now and in a way I am but from time to time I have small pinches of the feeling which I like: yaaay, my life isn’t as boring as I usually think!

anyways. on Tuesday my fellow strokie, Louis Gustin, invited me to a conference(meeting, whatever you should call it) to Warsaw. As a proper yes-woman, I agreed immediately, not even thinking about it. I thought that it would be pretty cool to meet Louis and even cooler to find out more about

life after stroke.

Continue reading

in my opinion my stroke Uncategorized

Workplace wellness: how your job could be better (thoughts after the conference)

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Again, after 2 months (sorry, these were really busy and difficult) I’m back to  Sharjah Forum and it’s theme.

I participated in the workshop about workplace wellness.

What is it? Wikipedia says

Workplace wellness is any workplace health promotion activity or organizational policy designed to support healthy behavior in the workplace and to improve health outcomes. Known as ‚corporate wellbeing’ outside the US, workplace wellness often comprises activities such as health education, medical screenings, weight management programs, on-site fitness programs or facilities.

and these words depict pretty well what we were discussing for quite a few hours but not quite what I was expecting. My thoughts on data I got bit chaotic but frustrating. Frustrating, because for me term workplace wellness and its representation aren’t really present in Polish reality. As a society we manage diseases easier, but get unhealthier, so we need something attractive to have a will to keep our bodies in a good shape. Implementing wellness programmes is a great idea. Which limits us, but on the other hand, saves us. Welcome to the modern world.

Leaving aside all philosophical divagations, my thoughts are simple.

For start: I can’t really recall many companies which would implement workplace wellness. In my Polish reality, it’s just not present. Sorry.

I admit that I’m not familiar with big corporation’s policies as I haven’t worked in one.

But still I have friends and I listen to stories. And how many examples I found? Right now, I can think of like 2-3 that could have been counted. A few days ago, for example, I had a chance to speak to a woman from Amazon and she mentioned such practices. To which extent do they care? I have no clue. It was a birthday dinner, not a work, so we left the topic quickly. But I know that they have, for instance, competition in losing kilograms between teams. Group one, which, in my opinion, makes it healthier*.

On the forum, there were people from organisations and companies who try to promote that or start such programmes. That’s a nice approach. There was a woman from HR department in a big company and she shared briefly their story. They started with nothing and people wouldn’t even care to know the new opportunities and possibilities. Only when they started with fun stuff. First, company parties with healthier food and attractive things to pull out people from behind the tables. Darts for instance. Then they started such things in office hours, implementing workplace wellness programs with very good results. Continue reading

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I hate my birthday. But it’s a good time to wrap up the year

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rebirth, stroke anniversary, hospitalEvery year on 3rd of January I wake up in an extremely bad mood which doesn’t leave me until midnight. Typical birthday blues. I try to have a full agenda, but this year… I had a migraine again. Vomited in the medical laboratory, the world was more painful than usual.

However, my birthday is the perfect time to share with you successes and failures of 2017. I’m gonna use numbers.

My first hero is 2:

  • 2 amazing months: July and November, when I felt well. They were full of joy, warmth and peace. Sources of their awesomeness were very different from each other but in the end, I spent two months almost without pain and depression, cherishing normal life
  • For the past two months, I haven’t been rehabilitating myself and exercising. I can’t explain it. It’s about being extremely busy and extremely lazy.
  • I started doing two cool things. I opened my business an started volunteering for poor people and against food waste. Shop gave my unemployed life bit of meaning, work for less fortunate made my need of helping others less meaningless.
  • Two things I’m actually proud of: my Lewaczka.pl blog (this one too;p) and first money earned since the stroke.
  • Two job offers. Nothing worked out of it, I have no clue why, but still: someone believed in me enough to offer me a place in his team.
  • Two brilliant blog entries from a guest star:) In Polish only, sorry!;)

12:

  • Pills I’m taking daily,
  • months since last birthday blues,
  • months till my 30th birthday

3:

  • three new diagnoses. Lupus: most likely I’ve been living with it for the past 10-15 years, not knowing about it, carotid artery dissection – could be the cause of strokes. Lupus, dissection, hole in my heart, I have many things to choose from;)
  • three hospitals I was admitted. All three admissions were planned.
  • For the third time, I was guaranteed social security money. Yay. I’m kind of covered till September.
  • 3 amazing trips. Denmark with a friend, Cyprus with family, Emirates for NCD Alliance conference... All of them were really great. Denmark was like completing lifelong dream, Cyprus nice time with my beloved people, Emirates: oh wow, it was my blog-wise achievement. Big one. I can’t stress enough how I enjoyed the time there.

1:

  • neurolupus, new kind of lupus thrown into my face. It’s about to be confirmed, now I imagine it as a little worm eating my brain and leaving me with depression, dementia and meaningless life,
  • one participation in an event of a big importance;)  well, at least for sick people,
  • new, brilliant psychotherapist,
  • one physiotherapist who has left me for the man. But I can’t be upset about it. I wish her best of luck with him, they deserve perfect life:)
  • One pronouncement saying that I’m disabled. It’s official. It’s good. It gives me a discount for a train. Twice a year;)
  • One magazine cover my face was on. I’m a cover girl;p
  • One sport I started to practice. I’m lousy. But Olympic games are once every 4 years, no worries here;)
  • Foreigner, I’m helping in settling here. He’s a friend and we are very happy to see his life easier from time to time.
  • Epilepsy attack. unexpected. Adding two years to my auto-ban;) (do not mistake with autobahn;p I mean I’m banned from driving for 2 additional years).
  • Website about spasticity I’ve consulted,
  • Day of the retired people I was celebrating,
  • the brother whom I love. But my love starts to be conditional. I don’t love him that much when he puts glass full of water on my back.

15:

  • kilos I’ve lost,

million:

  • of series that I completed,
  • hours in bed,
  • smiles and pleasant things that happened to me,
  • litres of water I drunk,
  • hours of not moving while I should move,
  • interviews I gave. It feels like a million anyway.
  • Minutes of escaping the reality.
  • of good, kind people I have around and I’ve met.

115:

  • texts for my polish blog (!!!). Only…

26

  • texts for an English version of my strokie blog. Poor result.

Zero:

  • of new strokes! None!
  • plans for that years. Many dreams though;)

It was a weird year. Horrible in many ways, but still kept finding reasons to smile. But dear my 29. and dear 2018:

by the way… one of the first songs I learned to play on a guitar. very bad. But for now it’d be perfect. Gotta try!:)

my stroke Uncategorized

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!:)

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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.

 

 

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 (;