Category Archives: Uncategorized

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.

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…

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

leaf

 

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.