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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

Uncategorized

What were you doing when your stroke happened?

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What were you doing when your brain stroke happened? I, myself, didn’t think about it much, but people keep asking me. And suddenly… I saw one topic on the Internet forum where strokies were sharing this information. I collected more, reminded myself stories from hospitals, and my readers. List surprised even me. It was diversified. And long. Now I am able to present thrilling collection which seems to scream „come on, it can happen anytime. Anywhere. To everyone”

let’s go then. I had

I had a stroke:

  • just after waking up
  • in work, during preparing to a hard day in the car rental place
  • while walking my dog
  • at the beginning of my job
  • during my afternoon nap
  • while Muay Thai work up
  • falling asleep
  • while driving
  • playing games n computer
  • during sex
  • gardening
  • during my wedding
  • on a couch while talking to my son
  • while talking to people from the stage
  • while sleeping
  • eating
  • during my holidays
  • during brain surgery
  • at a party in night club
  • while talking  on the phone
  • on my way to work
  • in taxi
  • during my jog
  • under the shower
  • while working
  • on the dentist chair
  • during my appearance in the news
  • while brushing my teeth
  • in the airport
  • on the football training
  • at the birthday party of my nephew
  • while vacuuming
  • working n the computer
  • while smoking
  • watching TV
  • in the hospital bed
  • while crying after the death of my cat
  • while shopping
  • cooking something
  • at hairdresser’s
  • while feeding my 5 months old baby
  • in autobus
  • while walking…

And me?

  • while driving a car
  • in toilet
  • while riding the bike

please remember that brain stroke is a very serious thing. and as it can happen at any unexpected moment, remember most common symptoms of it:

it can be a huge pain, loss of sight, loss of control in legs, loss of balance, for me once the world just felt weird, like it was spinning in a strange way… these videos show only main symptoms, but the usually occur.

Let’s hope that you will never have to answer the question about the place you have had stroke;)

 

Uncategorized

Gallery of the faces: I called. It was marvelous!

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I have a friend who is a fellow strokie. I might have mentioned him before, but I’m no sure. He’s a young French guy who suffered the stroke in Poland.

His stroke caused a big number of problems, such as aphasia, troubles with moving, spasticity… But this guy is determined to get better and gradually improves his health. Moreover, he does good things to the disabled community. He even plans his own blog:)

When we speak on Skype, he seems to be like me. My first impression was like: if I didn’t know, i would have thought that he had stroke problem. Normal boy, maybe looks for English words bit longer than a normal, fluent speaker, but you know stereotypes about French people & English;) my small experience shows that in France it’s easier to find a Polish speaker than English speaker. Anyway;) Continue reading

rehabilitation spasticity

I will be honest: my left hand is in a pretty bad shape

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My left hand has been neglected these days.

I was a guest of a 3 days wedding and the whole trip took me 5 full days. You can imagine that I wasn’t exactly an example of regularity. Yes, I was exercising a bit, but without any tools (for example my beans).

To be honest, I also lost control on my spasticity. My hand is mainly very stiff and my fingers are pathologically straight.

I  am surprised how bad my hand works on a keyboard. Writing suddenly got waaaay more tiring than a few weeks ago.

My plan is simple. I’ve created new ‚minimal’ plan and I gong to stick to it like crazy.

I will admit: the state of my hand is a failure for me. A huge failure. That’s why I’m expecting improvement over next few weeks.

 

 

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

Uncategorized

I thought we ruled it out, but… It’s lupus.

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I’ not sure whether I should laugh or cry. I have, finally confirmed, lupus. On my Polish blog, I had some texts about lupus. Why it could be the cause of stroke, or why I suspected I had one. Also why we ruled it out.

Now I’m left with my English site and I have to be bit straightforward: I have a very mild lupus. Bad news in bad time, but usually no one asks you when you want to receive such news.

WHY SHOULD I BE HAPPY WITH THIS DIAGNOSIS?

  • it’s a skin type. I don’t have to worry about kidneys, and eventually most of the organs, shutting down. Just about skin. Yay!
  • the treatment doesn’t involve steroids, but antimalarial meds. At least at the moment.
  • it’s been in me for years. A real pain in the ass. Now I have a chance to improve some things in my health.
  • I’ve not been that sure whether the kind of lupus causes strokes. But if so, treatment must help to prevent next strokes. Yay!
  • Because I’m having like very very very minor symptoms. Lupus is there, but it doesn’t bring any threat I wouldn’t know about.
  • I don’t have to search for the causes of allergy for the sun, rashes, hair falling out, swollen lips… I have it in one diagnosis!

WHY I SHOULDN’T BE HAPPY ABOUT IT?

  • the collection of chronic illnesses grows.
  • listing my diseases and maladies will take even more time.
  • it’s pain in the ass.
  • I feel like the sickest person on earth
  • I can’t leave rheumatologist after two visits. She stays with me.
  • I have to learn another complicated illness. Come on. I’m into brain, not skin. Actually, it’s been few days and I haven’t started reading on lupus. I have a whole life for that.
  • there is not much hope that one day I will go to the sun not covering my face.

REACTIONS TO THE NEWS WERE VERY DIFFERENT FROM EACH OTHER

  • at least it’s not cancer (come on…)
  • you have to find yourself a new hobby
  • I thought it’s been excluded already? What’s going on?
  • I don’t know the second person who would confront so many obstacles with such strength and class. (…) You don’t have any new disease in your packet really. You just found out about it.
  • I’m here if you want to talk.
  • Oh God, another one…
  • at least you know what’s caused your strokes
  • Dad: silence. Grandma: silence.
  • Me: laughter. but just after the cascade of the thoughts.

and it’s just tough and sad I guess. It’s not like I’m having only that lupus thing on my mind, but it doesn’t help to make myself better.

I just have to fight and I learn about myself as much as I want to.  I had some texts about good stuff coming, but suddenly they don’t feel as important as like a week ago. fun thing is that I have to avoid.

fun thing is that I have to avoid the sun, especially this very sharp, like opposite of British. And I’m going for a week for Cyprus. Good for me and lupus;)

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.