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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!:)

my stroke

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.

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!”)