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

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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;)

 

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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

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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.

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).