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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!:)

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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

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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!:)

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

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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:))

 

 

my stroke

From the fidget’s diary… how is it like to lie in bed day. and another one. and one after. and…

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lyingLately, I’ve read the article for carers advising them how to lay their loved ones/their patients in bed after brain stroke. I bet it’s very important and extremely useful article, but to tell the truth, I haven’t seen this advice implemented in hospitals. I have an impression that convenience of overworked carers is usually more important than putting the elbow in the right angle.

But! What do I know? Actually, my own stroke spared me and even the Times of severe, movement disability gave me some freedom. Don’t mistake it as an ability to walk, dance and run marathons, it wasn’t like that, but come on, conscious and tied to your bed is bad.

I will not tell you how sick person should lie in the hospital bed,  just can tell you how it feels like. 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