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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

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:))

 

 

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

my stroke

I signed up for volunteer work. If I didn’t, solitude would kill me

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Sadder part of the text

Life goes as it goes. No point in asking „why me”, because there is no good answer for that. I don’t ask, but I try to ask. Actually, I still hope that it’s visible even in the times of trouble ;)) and when I complain.

The truth is I feel lonely. Not even for some kind of metaphorical-not defined feeling of distinctiveness or incomprehension. I feel lonely because I am lonely.

Life makes bad jokes. It’s just turned out, that most of my closest colleagues and friends, who are still present in my city, is going to fade away. In the next few weeks majority of people leaves Szczecin for different cities and countries. Even m beloved physiotherapist leaves me. Mrs. Madzia is going abroad.  Continue reading

my stroke

My first visit in the office for disabled

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lefthandLuckily, there are two or three benches outside.  Some of us are sitting, rest is treading water.

I’m  just in front of the office for disabled people. Sitting and watching people. Having a place to rest, I’m one of more fortunate. Everyone who came later isn’t that lucky. There is the small crowd, louder and more nervous every minute. People standing seem to be even more upset.

Suddenly, doors are opening and the fresh face rush towards them. „Excuse ma’am, we are all waiting!”, people are protesting. „Well, we all just want the forms!”

But yelling doesn’t seem to be finishing. The woman who succeeded in unleashing anger still wants to keep her sense of dignity. She yells a bit, insulting others. Insulting us on her way out. I’m sure that if she could, she would slam the door. To elevator.

I’m still sitting and I’m scared. Disabled in front of my face change, they come into and out the small cabinet. Some them by „taking the forms” really meant „taking the forms”. It’s my turn. I’m scared to death and become numb. Being unable to speak, I can only look and try to spell out words and feel like a hunted small animal. I regret not taking my mum. I really do. Continue reading