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).

Uncategorized

Stairs. So normal. So scary.

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Stairs.

When you are disable nothing can cause bigger frustration. I’m somehow certain.

If you don’t walk well, stairs are effective tool of keeping you from the world. They are barier bigger than kerbstones and, I’m somehow convinced,  they are boat problem of people worth disabiliTy in the movement area.  Living on the first floor without elevator can be disaster which doesn’t let you do anything outside. You can’t go to doctors,  for shopping or anywhere workout external help.  So simple and so tragic.

I remember learning to walk the stairs after first stroke.  There were few conditions under physiotheraposts were willing to take me to stairs.  One: I must have been  stable enough.  Second: I must have been asegúrate at all times.  Going alone was out of discussion.  And it’s good to ask for help.  Believe me, for own comfort and security,  it’s better to be assecurated.

probably that’s why my bones are still OK:)

I’m after 2,5 brain strokes and just found that I’m in a weird place.  Walking up is non problematic at all,  but going down the stairs suddenly became problematic.  I feel less balanced.  As if my leg was working bit worse.  As if I delayed the movement of my left limb. It makes me crazy.  Every step is like a threat. Two steps – one stair?  Its like disaster. My physiotherapist would scream on me – But working on  bad patterns is doing harm.

So I try to keep my balance and beat my fears, work on my feet and walk.  That’s why I don’t use elevator in hospital i’m at the moment.

To tell the truth I think it’s about my fears and psychological burden. Once in my life I was in the situation that stress and depressive thoughts were affecting my body.  Feeling that it’s similar problem is big.  So I just keep going. And it will improve:)

 

in my opinion stroke survivors

Just to remind you woman who took selfie during her stroke

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This video has been online for few years, but I’ve seen it just recently. Maybe someone else haven’t watched it:

You don’t need to listen to what she says to see her face dropping, understand that she is struggling with the hand. She talks about other things too. For example about feeling numb. Or about the fact, that she had been released from hospital just recently.

She recorded the video to show her doctors what was her problem before symptoms were gone. Quick reaction and taking the phone can seem bit funny, but it helped doctors to diagnose her with three TIAs. Without video they thought that she was feeling badly from being tired or something like that.

Stacey Yepes was driving home (i had TIA behind the wheel too). Now she says that she keeps receiving messages from friends and strangers, that this vid helped someone to recognize a stroke. Continue reading

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:)