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my stroke spasticity stroke survivors Uncategorized

Stroke survivors panel – two days, million challenges

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in the times that hitchhiking seemed so easy... not so long ago;)

in the times that hitchhiking seemed so easy… not so long ago;)

Tomorrow I’m going for long anticipated trip.

I’m going to Frankfurt (am Main!) for the europe’s stroke survivors panel.

As I was telling everyone on my Polish blog… We re going to inaugurate there one project regarding spasticity. To tell the truth I have no idea how it is going to look exactly, but I really hope that main beneficiaries will be you, not the sponsor;p

I was recomended to the panel by Fundacja Udaru Mózgu (Polish Stroke Foundation). thanks to my first blog (click;p).

I’m not a member of any stroke association, including FUM, but they seem to like me there.

Of course my second stroke (yeah yeah, from 16th of August) became a huge threat to my participation. But i thought about everything very carefully and i decided  to go.

Of course I will be:

  1. very confused all the time
  2. tired like marathon runner on the 41st kilometer
  3. feeling nausea like 24h a day
  4. all the time stressed

but

  1. happy that i’d doing something work-like
  2. independent
  3. travelling:D
  4. in Frankfurt

Well then. Keep fingers crossed for me. And for whole project.

I will be back tommorow, so you will not miss me too much. Thanks for help! and hasta la vista (;

 

 

Uncategorized what have I learned after stroke

What have I learned after stroke (I): websites!

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Above all I learned how to make simple pages in WordPress, and thanks to this ability you can read my blog. First one started just 4 months after brain stroke, I was pretty good student of my friend;)

My StrokeTales is on my own domain, which I bought, I also bought space on server, I did everything by myself here!

Maybe you can say there is no great „WOW”, but hey, for me it’s a wow. It’s indepenent and complex work of art. And I still want to improve it, to make my site better and more beautiful:)

 

my stroke rehabilitation Uncategorized

I don’t have power…

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pacynkaImagine that suddenly you loose power over your body. That you lie in the bed and want to scratch head and you can’t. Even though your hand doesn’t really hurt, you can’t move it more than few cm. As if someone drugged you.

Imagine that you drive your car talking to a friend sitting next to you and suddenly, in one second, your words become mumbling, and when you try to change the gear, it doesn’t feel like your hand, it’s more like log of wood hitting on something. Imagine that after falling down and you can’t get up because you have no power in your leg and hand.

If you think that you can imagine that, you’ve never been more mistaken in your life. My hemi-paresis (of left side) after brain stroke was (and still is) the most awkward I’ve ever experienced, you kind of can move your limbs, but not in a way you want. And they are so weak that you sometimes wish that you didn’t have the them at all.

So many stroke survivors struggle with hemi-paresis. It’s quite different from paralysis, but I guess equally frustrating. It’s a state of „in between”, you kind of can, but really can’t. Your brain can’t guide your hand or leg or only fingers.

When paresis hits you the lack of power over your body is just weird, you notice formerly unnoticeable things. Me myself I feel it as if a bunch of puppeteers sat in my body and pulled strings just to make my moves more difficult.

At some point it’s easy to give up and give all power to the puppeteers. To give up working out, your physiotherapy, but one must cut the strings by working out. I still have problems with my palm and I work out. Time passes and it’s still frustrating, but it’s not worth giving up.

in my opinion my stroke

I got an increase on my monthly income! Yay!

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Our caring government, or National Insurance Company took care of people like me and we got increase on our monthly payment.

Me myself i got

1,92 PLN

which gives me about

0,44 EUR, 0,59 USD, or 0,36 GBP

more of monthly income.

I can spend it in plenty of ways! For instance:

buy 6 bread rolls in a discount market,
buy 3-4 bread rolls in bakery
buy one cigarette (illegally, but still possible)
use 200 l more of tap water
Buy half price ticket for bus in my city for 15 min,
Buy half price ticket for Warsawian bus for 20 min,
buy one lemon in the beginning of the season
buy 3 pencils with a rubber
buy a donut
buy two zucchinis in the season for zucchinis
buy sesame cookies
change it to 192 coins and throw them to every fountain thinking wish of winning big money lottery
send few (even more) complaining texts to friends
Buy two cheap instant soups
Buy one normal instant soup
buy Ikea hot-dog
Buy the cheapest beer in Poland
Buy one kilo of potatoes
Buy one issue of famous Polish tabloid
buy a lighter
buy a roll of toilet paper
But if I’m patient enough I can save this money for a year and buy:

set 32: knucke with fries and pickled cucumber

or

set 34: Penne with salmon and creamy souce or penne Alfredo, with ripening ham , driend tomatos, rucola and creamy souce

or set 35: grilled chicken breast with blue cheese, with rice and veggies

(menu of this restaurant).

If I saved for 3 months more I could have bought more excellent food. And for the change I could but matches on art.

Possibilities are endless! With 192 coins I could coninue my physiothrapy like that:

fasolki

 

almost, because i would have to save for beans:P

I can’t see any reason to complain. In fact, I should be happy. We have deflation, so actually they should lower amount I get…

PS

My brother, the best guy I know, helped me a lot while writing. I asked for ideas my friends also, but their imagination doesnt get the importance of this topic, sorry.

PS2

kitchen my stroke Uncategorized

Drink water, it’s good for your brain(;

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water, drining waterWe hear it always and everywhere. Drink water, drink water, drink water, at least 1,5 l a day, drink water, drink water to stay fit and healthy, drink water, drink water, drink water to get rid of toxins, drink water…. Yeah, for me it’s also boring. I don’t even like water, I feel as if it was for horses and preferably I would drink only juices (all that sugar, blah!), coffee with milk (dehydrating, awful!) and Coke zero (blah, just awful, blah!).

The thing is YOUR BRAIN NEEDS MUCH WATER TO REGENERATE AND REBUILD.

When (finally) my doctors said that they can take me off the drip-bags I had to promise them to rink at least 1,5 l of water plus fluids given for meals. That was much more than 2 liters, I could even drink more! Without it recovery would be more difficult, cause our neurons need it. Really!

Still I try to remember about it, but I’m only human and I tend to forget about important things. When I realize that I haven’t drunken enough I just go to the kitchen and drink big glass of tap water, without bothering myself with lemon, mint and so on…

Of course, hydrating yourself is important for bunch of reasons, but only problems of my brain could convince me that ‚horse drink’ (as we used to call it) is worth putting on my diet. For me there is no question whether the glass if half full or half empty anymore. It should be empty. And empty. And again empty.

 

my stroke Uncategorized

Stroke? That young? :o

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young survivor– you had a stroke? So young?!?

– no, I was older – I would to reply that way for every single comment of this kind.

I find this question stupid. I really don’t know how to respond. I found some ways to handle it.

To say „yes” and add one of my hospital stories, is one of them. It shows others that I really been trough a lot but I’m handling. Usually I also add the most likely cause of my stroke, not to give others reason to whisper behind my back about a fat girl who smoked too much…

Not that I care too much, but a bit I do. You should know that brain stroke is rather an illness of eldery (age is main risk factor, sorry), but it can hit anyone, anytime. In one of the British sites on strokes I read that one in four people suffering is in working age or younger, even small children. Hey, 1 in 4, 25% of us, that’s a huge amount!

And still more and more young people suffer from it. Doctors suspect that we should blame our lifestyle. On the other hand half of a year ago I read an interview with neurologist who said that average age of having a stroke is growing, but media is collecting our attention for young people. I’m not sure which info is true, in the end these don’t have to exclude each other;)

Yes, I’m the unlucky one to be young survivor, I was 25 when it happened. I know that it will make my life difficult for years. But I feel special, in a way;)  Personally I know only two survivors under 30, and over 60 – tens…. In this unlucky thing there is some luck: my brain plasticity is still huge, so my „brainholes” can be replaed veeeeery soon. I just have to work on it as hard as possible. And I do:)

my stroke rehabilitation Uncategorized

the most important tool of your physiotherapy

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krzesło

Why just after brain stroke you don’t work out 10 hours a day non-stop?

Why your physioterapist cares always is sure that you have a chair next to you?

Because rehabilitation is not a gym. It’s not trainihng for marathon. And your healt is the most important. Your physiotherapist know that you have to rest even if you don’t feel tired. Overtraining yourself can be damaging, and consequences might be worse than simple muscle pain.

My Mrs. Magda was always watching me closely when I was doing my workouts. I would always hear „and did you take a break? Too short!”.

I „overworked” myself few times. Once, when I had visitors in hospital and was doing my manual exercises with beans for more than two hours without any breaks. Then, for few days I had problems with using my hand „normally”. It was too tires. Opening it was a great challenge, and before I hadn’t had problems with it! I felt just weird.

Another time was also on manual exercises. I learn’t to knit after stroke and suddenly I told everyone that I would make them a scarf. Great! Was doing them days and nights. And it made my hand stiff, not to say a bit spastic… The damage was done. I’m sure it was not only due to knitting, but for sure also…. Remember,  when you work out, take breaks! Take rest, sit down, put your hand on a table. Don’t overwork, don’t listen to your dad saying „let’s do it 50 times more”.

Physiotherapists have a dreadful task of judging whether moaning patient should really take a break or is just lazy. Don’t be lazy, but don’t overwork yourself. The process of recovery takes time and effort, it’s not worth to spoil it with too much training.

P.S.

Even professional athletes can be overtrained. Really. Resting is important part of most of activities, not only in rehabilitation. Believe me(;

my stroke Uncategorized

this place I still feel weird about

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toiletWhat demands we usually have toward restroom?

Well, it should be clean and locked. It should give us feeling of intimacy and comfort.

I think my stroke took it these from me forever. It happened in a locked bathroom. Of course I tried to stand up, but all I achieved was hitting my head several times. I think I passed out for a moment, I remember some parts of rescue mission, but not much.

I know that suddenly safe place became something what brings back memories of „almostlosing” life. I have no fear in full meaning of the word, but every single time I come into to bathroom I see myself luriching left, falling down and hitting the wall with my head. For a second i watch the wall to realize that I’m now and here, not then and there, and I’m safe now.

I handle it pretty well, I don’t get paralized. But it’s there every single time, like a shadow over every toilet I go.

my stroke rehabilitation Uncategorized

Let’s think about your minimum

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lefthandEnding „institutionalized” rehabilitation in hospital is always the big test. Will I still workout for my better future? Will I continue with good piece advice of physiotherapists? For most of people I know enthusiasm ends within two weeks.

To tell the truth among tens of people I spoke to during my hospital times only one person admitted that she’s been actually exercising almost every day for last 20 years. This incredible lady has SM and she is moving with just one cane. I admire her so much for being so smart and dedicated to her health. For me she is a person to look up to.

Well I’m not that strong. I’m hardworking, BUT lazy (I know how it sounds, but believe me, it’s more than possible). And that’s why I made for myself something I call „my plan of minimum”. This is a rehabilitation plan which I have to do even if i feel like laziest person ever.

It’s like „must do”, even while being superbusy, superlazy, during the travel, I have to do it.

For now it goes like this:

manual exercises 15 minutes (you can do it everywhere)
one logical game
exercises of face
reading (preferably aloud, but silent reading of difficult text will also do)
language game or languge learning (it’s about improving my speaking skills and vocabulary)

Most of these you can do during other activities (if you can do two at the time). Doing such „plan of minimum” doesn’t let you feel as someone who just doesn’t care about himself.

For me this plan change every few months, and to tell the truth there were months during which I did only  this, I felt so bad that my minimum was maximum at the same time.

It’s easy to give up fighting for your health and once you stop for some time it’s very hard to go back to routine. If there is something like this it’s easier for me not to give up…

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.