Category Archives: my stroke

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.

  • Lying in bed hurts. Hurts so much. EVERYTHING HURTS. Sometimes I feel like informing people that my ass hurts (if it really hurts), but it really does. If you have to lay down still, it just hurts you.
  • The temperature of your environment is ALWAYS too high or too low. Never just ok. I swear. Your duvet never is just right. constant uncovering or covering yourself is your only way to handle the discomfort.
  • when I was laying down I felt as if my hearing was much better than normally. You hear every whisper, every machine from the hospital, every step of a nurse. At least you think so. It’s tiring, and you just want to have the silence to have proper rest, good night sleep. Unfortunately, I learned to ask for sleeping pills after the second stroke. Before I had spent plenty of sleepless nights, listening to the noises of the hospital. Finally, I learned that it helps me to survive.
  • when you are plugged into all these monitors and machines which check whether you’re alive or not, it’s extremely easy to unplug yourself. By accident, of course. Sometimes it looked very funny. For example, after my heart procedure, I wasn’t on nothing like intensive care, just ordinary room, but I had all these portable monitors on me. at some point, I knew that some of the cables got unplugged. but it took hours to get attention from nurses. I don’t know what went wrong there, but I figured that if I had some complications then, I would be in a really big trouble. Of course, the nurse was screaming at me when she came to plug me again, but I was too confused to care. I was just 3 months after stroke, and I still had problems with reality.
  • if I had power, I would have always changed my position. no matter in which position nurses and family tried to put me.
  • the rule is simple: Strokie should lie down in such way to make affected side active. but you know. rules are one thing, reality second one. As far as I remember I was making so much effort to use my non-affected hand. I could do twists, tumbles, just to use my right hand. I didn’t know anything about the importance of activating left one. To tell the truth, even if I did know, I wouldn’t have had been so much concerned. I didn’t know anything about the impact of stroke on one’s life. so I wouldn’t care.
  • When you lie down for a long time the toilet thing starts to be your obsession. I’m sure that diaper, urinal or catheter isn’t a dream of any adult person, it’s a necessity. It’s not comfortable, at the beginning you feel ashamed… The catheter, in the end, isn’t that bad, let’s say, it’s more inconvenient than annoying. But when you have a diaper changed for the first time you think that you’d rather die than have this experience. I did, anyway. You dream of standing up and going to the toilet by yourself so much, that it’s difficult to imagine. If you hadn’t cursed your illness before, that was the first moment to do it.

You can think that I’m exaggerating, but it’s nothing like that. Lying in bed for a longer period of time isn’t a holiday. Few Times I heard that it’s like a rest. For me, it wasn’t. And it isn’t. And, probably, will never be like a rest. Even hospital pig (my hospital toy to hug) doesn’t help.

Now you know how it feels. At least how I feel about lying in bed… ;))

 

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.

I also think that I haven’t made my peace with all of it. Not really being sick itself – I have an impression that this part I mastered pretty well. I mean that I see clear limitations caused by my stroke. I cry when I speak of things I can’t do. As these are absurdly small, I feel bad about myself.

My favourite example is this about the Nobel Prize. Maybe I mentioned it like 100 times now but I have to mention it in this text too. My dad told me that I will not win the Nobel Prize in literature and suggested an easier category. 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.

But lady helps me. That’s the first time I hear the friendly voice in this building. After our common effort, we find out what I need. It’s not that easy! But I’m happy to be left safe and as silent as it’s possible.

On my way out I can let my doubts out. In the end, it wasn’t that bad. But I spot something extremely weird. None of the people looks disabled. No visual signs of disability in front of the bureau for disabled.

We just want to be sick officially to lead bit easier life. Absurd of need of giving the title to the disease is, at least there and then, huge. In some time I will meet these people who are going to decide whether I’m sick enough to make my life of strokie bit easier. That’s quite ridiculous.

So far I don’t have the paper proving that I’m not fully healthy in my wallet. Like others in this narrow corridor, I look very healthy. Tired, maybe, but healthy. My disability is sill to come.

my stroke stroke survivors Uncategorized

Happy Easter!

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Easter is coming. I want to wish you everything which is good, but that later. If i tell you now, you will not read the important part (( ;

Lately I’ve been spending hours a day talking to one guy;)  Sometimes it even sounds feels like a confession – well, since i don’t go to the church, maybe it’s needed. I talk about problems that I’ve been discussing here for past two years too.

Of course I’m being cautious, why deter someone right away, but still. Strokes, spasticity, hormones, epilepsy, Rheumatology issues, many things in general. Shortages in abilities too.

And after confessing all of it i hear what? ‚It’s ok, you are more than that’.

At first I was left in deep shock. Because 99 percent of reactions are entirely different.

It’s so rare to hear something like that from person who isn’t that involved into your problems for, at least months.

Typical reactions are rather like this:

uno: uncomfortable curiosity. Tell me more, how did you earn that, why don’t you get a job?  

Two: astonishment. So young? Whaaaat? Does it even happen?  

Three: being snooty. Come on, you are healthy already. You are all right. I told you before that you should lead healthier lifestyle.  

There are some more, but come on. These reactions make it difficult to talk about illnesses in general, and make it hard to meet new people.

But sometimes unexpected happens. You are more than this.  

I know i was writing about all these things on my polish blog in the context of working of our wellbeing. But now I see, that there are people who can see us not by separate components, but the sum of them. thats why I’m in the perfect mood, and I’m having great Easter. And my mood affects my family in a really good way.

Now my wishes:

I wish you the happiest Easter time. i wish you that all the cakes would end up on taste buds, not in adipose tissue. I wish you dry Wet Monday (i hate changing clothes several times a day) and good people around, who see the sum, not components. 

my stroke

The cause of my strokes is found! Carotid artery dissection. So happy!

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Another 4 days in hospital and… The cause of my stroke is found. Carotid artery dissection. Hooray!

As you may know, I’ve had millions of checkups of millions of things, I’ve been visiting doctors patiently for the past two years and increased my actions in this field after second stroke. And finally! FINALLY! Some doctors decided to send me to angiography.

And angiography showed a problem. It was conducted by brilliant specialist in the best Polish hospital (I have to thank my friends and my luck here)… But I didn’t expect much. Really I didn’t. I had just slight evidence that this procedure is needed.

My first angio CT scan didn’t small aneurysm or something like that. Something to be controlled, not to be removed.

Now we know that the problem has been bigger.

Actually this dissection is too small to have stent or some kind of balloon angioplasty. The procedure in the neck is very dangerous itself. I got better meds. Bye bye, aspirin!

Angiography is a procedure in which your arteries are the road for a cable with some kind of camera to watch my own arteries!  and they weren’t well enough. It could have been the reason of my two strokes. I’m happy that we found out this. The day I had answer has been the happiest one for the past 2 years. I mean it.

And I didn’t eat anything till supper!;) So imagine how huge it is;)

I think i had slightest stroke after that (my face dropped bit more;p but now it’s ok).

my stroke rehabilitation spasticity Uncategorized

Finally! Website about spasticity is here!

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With slight delay I may present you website with complex knowledge about spasticity:

http://lifewithspasticity.com

Right now only in English, but the website is going to be translated to other languages (including Polish, that’s great news for my Polish readers;) The morethe better i guess. I think the site will be available for more than English speakers:)

THE WEBSITE HAD IT’S LAUNCH, BUT WILL BE UPDATED.

For example next questions are waiting to be answered. You may remember that we (me and you, my readers) submitted some questions too.

To tell the truth I’m certain that the website will do many good things researches show people know about spasticity less than they should. Often they don’t even know what they are suffering from. This website is a first place online (I’m certain for like 99,99999999%) that collected important all basic and lot of non-basic data about spasticity. Actually it helped also me, and even before i wouldn’t call myself ignorant in this matter.

As some of you remember, I was Polish member of a board that had a pleasure to consult this spasticity website. Now it’s not only pleasure, now I’m really proud.

I’m somehow convinced that many (not only strokies!) will benefit from this project. This site arms us with weapon necessary to fight this condition:) And I’m not (sadly;ppp) paid to tell this, I really mean it:)

my stroke rehabilitation Uncategorized

What happens to your brain when you exercise?

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This is truely comforting. It’s so important to get to know out brain and impact of exercises.

For these of you who can’t watch the video, i will just give a short resume.

This lady speaks about three great things:

  1. Exercising makes you happier. During working out grows level of for neurotransmiters  (or neurohormons) which are responsible for your mood. You generaly get happier:)
  2. Your attention and concentration improves! Well, many researches prove that.
  3. exercising stimulates producing new cells in hipocamp. Hipocamp is very, very important, as stimulating it is improving our long term memory.

So. Three things so useful for stroke survivors. I believe all of  these:)  If we want to be happy, feel better and focus better, and have better memory,  invite someone for a long walk. Well, tommorow I’m gonna start the day with my x-trainer;)