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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

Uncategorized

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.

 

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

Uncategorized

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

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!:)

Uncategorized

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