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How to survive Easter (Christmas or any big celebration) after brain stroke?

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easter, Well, it’s not easy. Especially „firsts” after stroke are difficult. Now I’m in pretty good shape, but i remember last year’s Easter. Wow, that was tough. Then and during my first Christmas I collected a bunch of advices for survivors (also based on this brilliant article). My friends added theirs and we did a pretty short and – I think – useful guide.

 

  1. Be sure that your host is aware that you can get tired easily and go rest (go home) early. If it’s you and your closest family, they will understand everything. If you are visiting distant relatives it will save you from the awkward moment of stopping you from going away and this sad sentence „please, stay with us for a bit longer”.
  2. Make sure that every place you go has a quiet (or at least more peaceful part) to take rest when you feel tired or overwhelmed. Luckily I spent my celebrations at home with parents and grandparents. When I go to shopping centre with them, I know where I can take rest (for example which coffe place is more quiet
  3. If possible avoid shopping centres! These are everything that survivor hates. Noise, bright lights, crowds, rush… Especially before big celebratiobs these places are too hectic. Maybe shopping can be done earlier, or online:)
  4. Think what you can do yourself and what you definitely can’t. Let’s be honest, cleaning windows is not a perfect thing for most survivors, but maybe making eggs is just right. Don’t do too much. And if you can’t participate in preparations  don’t feel guilty. You didn’t choose being unable to do usual things.
  5. If you have to do shopping yourself, identify threats and prevent damage. Sunglases and ear plugs can be life-saving things when  you are more sensitive for noise and light.
  6. christmas-1197878Don’t go to places by yourself. Family member or a friend can be your support when you need assistance. And survivors need it quite frequently. Remember it.
  7. It’s your right to say „no” or „no, thank you”. You don’t have to go everywhere and make everybody happy. YOu don’t have to attend every meeting that you are invited. During preparations I tell my mom, that I don’t have power anymore.
  8. Make lists. „To do list” and „to buy list”  are useful not only in life of a stroke survivor. But as a strokie I appreciate them more.
  9. Ask for help:) whenever you need it .
  10. Don’t forget about your excersises. I’m sure that on easter day it’s not possible to go with your routine, but „minimum” can be done and try to do it. You will not regret.
  11. Don’t let traditon win with your comfort. Mass at midnight on Christmas is important and a party on New Year’s Eve also. But believe me, at the moment your health is the most important thing in your life.
  12. Enjoy. Celebrations are for people to enjoy the families and time spent together.

For me first Christmas, first Easter, first (and second) birthday, first New Year’s Eve after leaving hospitals were very frustrating. Everything was different, even if familiar, still different. I had to give up my traditions and felt really tired. But I tried not to be beaten by the stroke and I succeeded. The thing is to enjoy. My cuckooflower is very nice this year and it makes me smile.

in my opinion stroke survivors Uncategorized

Thoughts on „My beautiful broken brain” (2016) by Sophie Robinson and Lotje Sodderland

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After seeimg this trailer I was delighted.

But when I saw that it’s available I was scared to watch it. I expected it could be a hard experience for me, stroke survivor myself, who finds it hard to discover beauty in her brand new brain.

Curiosity won. I watched it. With a cafe break in the middle because it was too emotional for me. Not because of the story, I knew what to expect after a stroke. Because of detailed insight of someone else’s stroke and all the emotions behind it. If you know, what I mean.

First time in my life I saw material that gave so close insight to the world of a stroke survivor. And it doesn’t matter that details of my experience were much different from Lotje’s. Principles stayed just the same.

If I’m faced to the question, „who am I?”, I’m someone who has huge amount of friends, very hard-working, travels all over the world, loves to read. What if all that evidence is removed? What does that make me?

says Lotje, 34-years old stroke survivor. It might seem even too philosophical, but actually most of stroke survivors have to deal with this question. And find their way of answering it. Movie is full of such questions and shows a way of finding answers. Even if it’s not always explicit.

For me one of the most important aspects of movie was filmmaking itself. I have a deep feeling that recording everything was not only a way to remember things for Lotje. It was helping her to understand what’s going on and put this brand new experience into an understandable structure. To tell the truth, my blog (first, Polish version) did the same thing for me. I was starting it with different goals, the more conscious way of experiencing myself came as a bonus. Which now is one of the most important things in my life.

All of it – story, the heroin, visuals, montage, edition looks brilliant and makes a great documentary. Really good one, modern and touching. I could easily imagine it nominated to Oscar prize, not only because it is „my” theme.

stroke

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It’s as beautiful as Lotje’s brain. Thanks for that.

P.S.

The movie is available on Netflix!:)))

in my opinion my stroke stroke survivors Uncategorized

Have you ever wondered how your stroke looked like?

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Maybe you looked exactly like this poor man?

The ‚funny video of a drunk policeman’ went of course viral. Now we know he suffered from a stroke. 

I fell on the floor. I was mumbling and my friends couldn’t understand a single word of mine. I kept trying to stand up but it didn’t work. I didn’t know what was happening and I wansn’t cooperating with my friends. 

Now I imagine that if my stroke happened few hours later, my friend might have thought „oh noooo, she got drunk and I have trouble now!” and then help me to get to the couch. Without calling 911 (or 112). And in the morning I could be dead.

How lucky I am that in the moment of stroke I wasn’t in the metro. I really am. Life of this policeman was destroyed twice. It could be any of us.

police, metro, brain stroke

I’m not saying that we should help every drunkenhead on our way, but one of my biggest wishes is to raise awareness of a stroke problem. Please know that obvious doesn’t have to be obvious. And also that paying attention to things around can save someone’s life.

my stroke rehabilitation Uncategorized

Running after stroke is possible! At least for me…

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neighbourhood

my running area:)

When one of my hospital’s physiotherapists asked me what I would like achieve with her, I said straight forward: I would like to run again.

She was very surprised. Weird wish for a survivor, who few months back couldn’t walk. Survivor who had just spent few months in hospitals, had countless checkups and had heart procedure, still with a slight hemiparesis of left side, left hand so tense that sometimes it hurts, suddenly dreams of running.

But she believed that I could run again. When we finished normal rehabilitation activities and place of working out was getting empty we started our practice on treadmill. Now i wish, someone had recorded my beginnings. I can’t describe how ridiculous they were. I had like zero coordination, one leg here, one leg there, but treadmill helped. My Mrs. Magda was gradually increasing the speed of the treadmill. I wasn’t allowed to look at the numbers. Slowly, but surly, after few days I was able to walk very fast.

And just few days before being discharged I „run” my first meters. My body had to „catch” the pattern of the movement. Slowly and not far, but I was running! I was so proud of myself.

Of course it was more like slow jog-trot, but I didn’t care. I didn’t care (and still I don’t) that I run more slowly that most people crawl. In the middle of the May, just 5 months I had my moment of glory, I ran 2,2 km (1,64 mi) in 22 minutes, without stopping even for a single second. I was sooo proud of myself.

And thankful for Mrs. Magda and my daddy and brother, who bought me gadgets to enjoy my first runs more. This made me believe, that impossible is nothing. Even for the stroke survivor.

my stroke Uncategorized

Does (ischemic) stroke hurt?

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brain in the box

brain in the boxFor a long while I had this question stuck in my head: does stroke hurts?

Up to few months after the stroke I thought it doesn’t. To be precise: I remembered that in hospital I was in a big pain. Everything hurt. Badly. But not head! I had a toothache. My head was in pain in the two places I hit it while standing up attempts. My ass hurt. My arms and legs hurt from all the drips.

But then I spoke to my dad and he told me that I felt terrible pain. I kept asking for pain-killers, I was moaning and I was holding my hand on a head. Not necessarily in a place where I  had hurt myself. And that was last time in my life when my boyfriend seemed to care about me. My mom says that he was sitting next to me and holding hand on my head. And with it I seemed to be more peaceful.

That was all about my swollen brain. It was so swollen that it nearly didn’t fit into my skull.

Somewhere I red that stroke itself doesn’t hurt. But the pain can be one of the symptoms. How crazy is that? Maybe depending on the kind, whether it is ischemic or hemorrhagic. Sudden pain can be one of the symptoms!

my stroke Uncategorized

Who is the strongest? My mom!

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psyMy brain stroke happened between 8 and 9 P.M, away from my hometown and my family which had luck of hosting my brother for Christmas. On the first night I remember calling my parents. Yes, not my mom, but parents. As a well-behaved girl I told the doctor that he had been lying to me by telling me that my parent’s were going to be there soon. Due to my knowledge my parent’s were like 500 km away. Good that he could have difficulties understanding my „speech”.

Doc was right though. Ania, my rescuer and best friend at the same time, immediately called my mother. And my mother, woken up, found my and my brother’s medical records, went to the pub where my dad was having just next beer with my brother, and the drove to me this 500 km all night. From time to time speaking to Ania and to doctor. She had to be the one in control of everything. She had to stay strong for me and for whole family. After my family reached hospital, she was in control. And she gave Ania a lift home, where she washed my blood from walls.

I know that in this first period she cried only once. When she opened my computer and saw my cheerful picture from last holidays, taken just a month back.

i have no idea from which place my mom took all the strengh she had then. From that time I know that my mom is a tough lady. Normally she is not like this, she has many doubts, is a bit lazy, like all of us… But you know in the time of crisis she was a superhero. She still is one. I love her for that and everything else (except for telling me all the time „Kasia, brush your hair!”)

my stroke Uncategorized

When you can’t count on your memory – the beginning

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brain strokeI remember, for example, telling my flatmate about rice on fire. I remember that after being admited to hospital I could just stand up and walk away. I remember feeling pain. It was my stupid tooth. I remember being full of energy and strengh. I also remember being fully awared what was going on.

I don’t remember it well. About rice I could only try to mumble few words which noone could understand. I had left-sided hemiparesis. I wasn’t able to move my left arm or leg. Standing up or even moving a bit on a pillow was impossible. My conciousness was restricted to the word that people kept repeating. „Stroke, stroke, stroke, stroke”.

I was 25 and i had a stroke. I really didn’t know what that means. I didn’t know that that ‚stroke thing’ will change my life. for 180 degrees. I was going to find out about it really soon.