Category Archives: my stroke

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 rehabilitation

Parasport, my my disability, my doubts.

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And if I am too healthy? (((;

shooting range comptetion shots Sometimes this question bugs me. Unbelievable. But only in the context of shooting.

I’ve been shooting in the sports club for a while now and it became my best hobby.

It is funny, astonishing and worrying at the same time.

I`ll explain to you what it is about.

Parasport (a so-called sport done by the disabled) is a category for the physically disabled. I hadn`t known about it until I started to fix papers for an international competition which was very important for me (I write about it here) – then I realized that parasport is a category for people without a leg, without a hand, with paresis, paralysis, spasms and so on and not for those who have problems w chronic tiredness, problems with reading or cognitive problems, with aphasia or mental impairment. Simply that.

And me?

Well, my physical disability expresses with subtlety – I don`t have a normal feeling in my left hand, I still have impairment of my left hand which is a stiff. My left foot toes still switch form spasms to bending upwards. Sometimes, when I don`t remember to remember I start to limp a little (grrrrrrrrrrrr).

Once, a friend from my club told me that you cannot see anything when you look at me. And it is true. Continue reading

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

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

my stroke Uncategorized

Sharjah – Dubai. NCD Alliance Global Forum 2017. Turistic entry;)

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I was telling people that I had been a participant in the conference of sick people in Dubai, but it wasn’t the conference of sick people in Dubai. It was the NCD Alliance Global Forum 2017 which means it was a forum of professors, NGOs, politicians, people advocating for patients and sick people themselves.

I came back. Now I’m able to tell you how it went;) Of course, I have plenty of thoughts on a subject of the conference – NCD Alliance Global Forum 2017, but I have the feeling that my readers are equally interested in the basics. how did I handle the trip? Was I very tired? Did I skip classes?;) What did I see in Dubai?;)

Warning: it’s gonna e a long entry, so I divided it into few parts so that people having difficulties in reading could read it part by part.

Trips

Plenty of you was asking me about flights and journey itself. Of course, I had to fly to UAE. Two flights each way. I didn’t experience any problems connected to flying. I mean none. Nothing hurt, even my ears weren’t hurting me during landing. After coming to the hotel I got a headache, but I bet the reason was exhaustion, not change of height:)

I know that plenty of people who suffered the brain stroke has huge problems with flying. I feel much better in a car than on a plane. In this case, it was the same. Sorry mom, the drive you gave me to the airport was much worse than the flight itself. Taxis, cars, buses were my nightmare. No exception in UAE. Sorry about that. Continue reading

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!:)

my stroke

Sharjah, NCD Alliance Gobal Forum, day 1 (noon;))

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konferencjaAs I was informing you on a stroketales facebook page, I was attending the NCD Alliance Global Forum 2017.

This is the translation of my polish text with some small amendments. Keep in mind that I wrote this text on a first day of the conference, after a whole day spent in planes, now it’s a week later.

My question is: do you even know what NCD is? Well, until I was invited to this conference, I had no clue what this term means.

NCD is an acronym for non-communicable disease. What is it? It’s an illness which you can’t catch someone or something. So stroke, lupus and depression fit the term, but AIDS, plague and flu don’t.

Actually, even Wikipedia doesn’t say ow wide this term is – it can be used only to chronic diseases, but it doesn’t have to;) But, for the sake of this blog let’sBut basically, that’s it. (by the way in polish we have term ‚choroby niezakaźne’. But it’s rather used only because we use term ‚communicable or infectious diseases’. ‚non-communicable ‚ is just waaaaaaaaaaaaaaaaaaaaaaaaaaaay to wide. But who I am to judge all of it;)

Let me go back to the main translation ( text from Dec 9th)

As you can suspect being a part of NCD Alliance Forum 2017 is, on one side an honour, on the other adventure, both for personal and ‚professional’ (stroke survivor’s;) causes. My blogs are the most precious thing for me, therefore being recognised for them is rewarding. Continue reading

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!:)

my stroke

I’ve earned my first money since stroke!

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With my own both hands (even left one, I’m so proud my darling;), with my eyes, and ears and patience.

I knew the price i would pay for that.Headache, millons of naps, nausea.. But i’ve earned my first money since 2 yers and 9 months. I hope that you understand the significance of this event.

Actually it was very little, but it’s not benefit of any kind, but money earned.

I will spend it for pleasures, maybe cocaine or chocolate, or coke zero. It will be so great!

I’m pretty sure that when it comes to the choice between cocaine and chocolate my mom would advice me on cocaine, as i’m losing weight so brilliantly…

I’m so pleased, the satsfaction is huge:))