It was a brain stem stroke! 😱🧠

Brain scans revealed I suffered a brain stem stroke and I was immediately placed in an Intensive Care Unit (ICU). I can only remember briefly opening my eyes and seeing a lot of nurses and doctors standing over me. My memory about the first few days in ICU isn’t that great. I think I was on so many medicatons, that I felt indifferent and slept a lot, not realising  the severity of the situation I was in. I was put in an induced coma for a day, to let my brain rest. A common procedure after suffering this type of brain injury. They decided to put me in their only private room,  because of my young age. Most patients in the main room were either people that abused alcohol or drugs, that were just after sustaining some kind of serious injury,  people that were in an accident and just overall people in critical condition. Most older and on life support-dying…thank God I never had to see that room.  I heard that very rarely people get out from here alive!

DH1D24 Intensive care of an elderly patient on a life support machine pulling through after major extensive operation

The room was quite big, painted white, with two windows, a large chest of drawers, where nurses kept their equipment and my bed was in the middle. There was a clock on the wall in between the windows, just to my left. That clock was my only entertainment when I was alone and the radio! (How sad? I know…)📻🕰.  I remember gazing at that clock so many times, counting the minutes (can’t even recall the amount of times but probably thousands, over the month I was there). I wasn’t even able to turn my head to look at it,  but fortunately it was within my eyesight. There was the entrance door and a sink right outside my room,  so every time I heard them opening I jumped from happiness (not literally) knowing I was about to see someone I loved entering the room. After I heard the door opening I was hoping to hear the water in the sink, that meant my dad (who just flew from Ireland) and Mr P arrived to spend the day with me..and that was getting me through the days…💑❤️.

 I regret not having any photos from ICU,  but I guess everyone was too worried about me. Taking photos was the last thing on their minds-seeing me there must have been so painful… I was plugged to a life supporting machines. I had a respirator breathing for me and a number of syringes pumping something into my bloodstream all day long. Until today I don’t know what was in them…🤷🏻‍♀️. I looked exactly the same as the patient in the example image above ☝️.

The brain stem is actually the first thing that develops in the womb, so as you can guess it’s very important-probably the most important part of our brain and the worst area for having a stroke. It’s responsible for the flow of messages between the brain and the rest of the body, acting as the main junction for the flow of key messages (signals), that are making our bodies work.

The severity of the brain stem stroke that I sustained and all that time that passed by gave me very little chance for surviving. This was the first message my dad got from the doctor (head of the ward) upon his arrival in hospital, I must add that he came straight from the airport and didn’t even see me yet. ” I’m very sorry but your daughter’s condition is critical, her organs will probably start shutting down one by one, giving her few days to live” was the kind of message he got from doctors. He was already terrified of seeing me, but after this (as he later told me) he didn’t even know how to enter the room..how to approach me? what to say? …I am his only child and the last time he saw me I was wheeling a suitcase in the corridor of the house, heading to the airport, excited to see my loved ones and for my holiday in Poland, smiling from ear to ear..now he had to see me in a hospital bed, plugged to life support machines, not even being able to hug him nor speak a word! Some change! My mum had to stay in Ireland and work to support us financially, she couldn’t even see her daughter and was just informed about me by my dad, over the phone. The stress was immense for them both and all of my close family! However they were always strong for me and still are until this day. Their belief in me and overall positivity gives me strength to push harder everyday and just simply to keep going! 💪👊👣❤️.

Despite the dire prognosis I survived,  I’m still alive and kicking (again not literally,  well not yet😜!), so this was the first time (of many) that I overcame the odds and proved doctors wrong! If I could kick and punch I would do that to so many people let me tell you 😂🤛-just joking🤪. At the time I was very vurnelable  and believed in everything doctors said, as you would! They have all the knowledge and experience,  therefore patients listen to eveything they say and believe in everything they hear, and that’s understandable, since they are the experts.  What I wasn’t aware of at the time was that doctors are taught to prepare you for that worst case scenario and can’t give you any false hope.  I completely understand that, but they’re just taking the statistics into account and at the end of the day they’re just numbers,  right? 🤔They are just people (like all of us) that cannot predict the future. This isn’t any type of attack towards them and yes there’s situations where we need them and they save lives…but there’s a time when you have to just block all the negativity around you and trust yourself.  I’m not saying that everything doctors ever say is negative,  I’m just saying that’s what I experienced and heard from other survivors (them and their loved ones agree with me on this, from what they have experienced).  I don’t think professionals realise the power they have and how their words can influence people. I know that there can’t be lies told or false hope given, but why take away that only hope some people are holding onto? Hope is such a powerful thing! Everyone nowadays talks about the power of belief, placebo effect,  autosuggestion, positivity…  because we believe so much in doctors and their authority,  perhaps changing the way they communicate with us could have outstanding effects on recovery? That’s something to think about!… Instead of hearing ”You will never walk again” wouldn’t it be so much better to hear something like ”nothing is impossible”, bacause it’s actually impossible until it’s done! And I’ve seen and read about it being done multiple times all over the world-people achieving the ”impossible”! That’s what I use to fuel myself, these type of stories!  What would be the point of thinking negative thoughts? What good would it do? Hope dies last and I have hope! 👊💪👣

🦋 “Ever notice the word ”rough” in ”through”? There is truth to that! Though the way may be rough, we are still able to get through it…” 🦋

Clodagh and me, when she visited back in 2017 and I met her in person for the first time 👭
#beatingglockedin 💪👊
We met again in November 2018-Kildare Village Outlet 🤶🤶🎄

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When I opened my eyes…👀

I opened my eyes, realising I’m in a hospital bed. It was a small room with white walls and me in the middle. Mr P was by my bedside and just as my gaze met his ”Klaudia if you can hear me and understand what I’m saying look towards the door”.  I’m thinking that’s easy, still in shock, not knowing what is happening. I cannot move or talk.  I look towards the door and he smiles😊. Only  now I know how important this moment was..my family knew I was still ME! Speaking to my fellow stroke survivors I know that being able to communicate is crucious. I was so lucky that Mr P could tell everyone I’m still in there! From speaking to other stroke survivors or from reading their books I know that not everyone was as fortunate as me. Kate Allatt for example (the image above is taken from her motivational speeches),  is a very successful stroke survivor who I had the pleasure of meeting (but I’ll come back to that in my later posts).  I remember her book being read to me in ICU, she was thought to be in a vegetative state, in other words ”not there” for nearly 2 weeks before her family realised she actually was fully aware. Can you imagine being able to hear and see everything around you but not being able to let people know? Don’t assume people are not cognitive to understand everything just because they look like they aren’t.

This is something I learnt and won’t ever forget! If you think I didn’t have it easy, I will suprise you and tell you that you’re wrong. A girl called Victoria Arlen was locked-in for 4 years! That’s right, 4 years of just listening to everyone around and being with your own thoughts, not being able to move/communicate at all. At least I could voluntarily move my eyes-Blessed! I’m definitely going to make a whole post on Victoria, because she’s an inspiration. I don’t know her but I follow her story until now and she had a huge impact on my life!

Victoria Arlen locked-in (left) and (right) after a journey to recovery that lasted a whole decade

The same day in the late afternoon my other grandmother comes in and starts talking to me: “Don’t worry Klaudusia (a cuter version of my name, used mainly by my grandparents ☺️👨‍🦳👵),  everything will be fine. I spoke with the doctors and they know what’s wrong…you have a Guillain-Barré syndrome (GBS), and they will be moving you to a bigger hospital for testing. I sigh from relief and smile (in my head),  because given my scientific background I actually know what GBS is.  I wish I could of hugged her back then,  but I couldn’t even show any face expression, I was just looking at her…that’s all I could do…

💡Guillain-Barré syndrome (GBS) 💡 is a rare neurological disorder in which the body’s immune system mistakenly attacks part of its peripheral nervous system—the network of nerves located outside of the brain and spinal cord. GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving the person unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS.

Everything about GBS 👇

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-sheets/Guillain-Barré-Syndrome-Fact-Sheet

I knew that GBS causes paralysis and typically you recover fully in time. Funnily enough my thesis was on Campylobacter jejuni, a bacteria found in chicken that can cause GBS, so I remembered coming across a lot of studies on this topic. What’s most important, I now knew what I had and what’s even more important this was only temporary…well that’s what I thought…

The nurses got me ready and I was on my way to a different hospital for testing and brain scans. Another trip in an ambulance, for this one I was awake and I can actually remember it.  I was holding onto the thought that I woul be completely recovered in a few months time…at most!

🦋 “Not everyone thinks the way you think, knows the things you know, believes the things you believe nor acts the way you would act. Remember this and you will get along with people…” 🦋

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When it all began…

🏐 September 2015 🏐 👉🏼🚑 🏥

One evening in volleyball training we were practicing a drill which we had always done in a sport that I have always loved. Within a few minutes I landed on the ground feeling very different. I had to come off the court, and as I was walking towards the bench I felt weak and lightheaded. I sat down, drinking water, but my head started spinning..something wasn’t right! I decided to go outside to get some fresh air, my coach followed me. Feeling this weak was something I’ve never experienced before, I sat on the ground just outside the gym hall. I got this excruciating pain in the back of my neck/head…I was terrified, however this was nothing in comparison to what was coming. My coach called two of my best friends, who trained there too and they helped me up off the ground, walking up to his car. They helped me sit in the front passenger seat, and as I sat down something very worrying happened. I had a short episode of paralysis (that lasted approx. 10 minutes), on the right side of my body. My right hand went into a spasm, and went into a weird shape, I lost control over my neck muscles, so it just flopped forward, but worst of all I realised I couldn’t swallow my saliva and I started panicking. My friend was talking to me, holding my head and calming me down. Well, she was trying her best but I had so many dark thoughts running through my head! At that moment they rang an ambulance. It arrived pretty fast and I was vomiting with a vertigo all the way to the hospital. When they wheeled me from the ambulance I saw my parents and my boyfriend (they must have contacted them), and I felt a little calmer. I was in A&E for a few hours waiting and I just vividly and distinctly remember being asked if there was brain tumour history in my family. Brain tumour? 😱😨 my face dropped…worst has come I thought! Anyway…to cut a long story short I was kept in hospital for 2 nights and then released home. I flew to Poland for my holidays just a few days later ✈️.

🇵🇱 October 2015 🇵🇱

So me and my boyfriend at the time (I’ll call him Mr P)  arrived in Kraków on October 2nd 2015. Little did I know,  just in 5 days this 2 week holiday would end in me staying in Poland for a year!  We decided to spend a night in this beautiful city, before driving down to my hometown-Żywiec, to continue the holiday. I was really excited, as we had big celebrations planned ahead for the 8th of October-my grandfather’s 70th 👨‍🦳👨‍👧🎂🥳. Me and Mr P were also celebrating Our second anniversary. Here I have to add that Kraków is really worth seeing. It was my first time visiting (even though I’m Polish🙈🙉 I know the irony, right?!), but it definitely wasn’t the last time! It’s so close to the airport, and there’s so much to see-especially the beautiful square ☝️☝️☝️. If you’re ever in Kraków and want to eat good steak 🥩🍷 you have to book the Pimiento restaurant-one of the best steaks I ever had, no kidding! 👌😍

Pimiento-Argentinian steakhouse 👌😋

On the 7th, the nightmare started and my life changed forever! In the early afternoon I was cleaning the fireplace at my parents’ house, where we were staying and I started feeling my hand going numb. It just went from there, the other hand and my legs too. It was all happening very slowly..I tried staying calm, lying on the sofa sipping some water and hoping the symptomps would stop. In the meantime I asked Mr P to dial my grandmother’s mobile number. I was worried that something was going to happen and he would have trouble calling an ambulance and giving them directions to the house, as Mr P is Irish and doesn’t speak any Polish. My grandmother arrived fast, because she lived only 15 minutes away..she sat beside me and we just kept chatting away, while weird things were happening in my body (I was having a stroke without even knowing😱). When my head started spinning and I started vomitting, we decided to call an ambulance. It arrived fast and the first thing they asked when they saw me was: ”did you take any drugs?” 😟🙄… I just remember answering them and explaining what was happening to me, before loosing my consciousness. Next thing I know, I’m waking up in hospital…

Before I keep going I would like to share with you what has happened in between. I was told this, as I was unconscious and unaware that my life was being saved in that ambulance 🚑. I will try to paint a little picture for you here… I’m inside the ambulance, which is parked right outside the house. Mr P and my grandmother are waiting outside, waiting and waiting. I can only imagine what was going on in their heads at that time.. During one of our conversations sometime later, Mr P told me that a thought of a paramedic coming out and saying that unfortunately I didn’t make it crossed his mind at that time . Every thought was present in his brain, it was a huge mixture of emotions. For half an hour the ambulance stayed still, and I was being intubated inside.. you see I lost my swallowing ability too. I couldn’t actually breath on my own and because I vomitted earlier, a food particle got stuck in my lungs, causing aspiration pneumonia just days later (as if I hadn’t enough going on already🙉😱, but when it rains it pours🤷🏻‍♀️. When the procedure was finished and I was finally stable the ambulance transffered me to a hospital, while my grandmother and Mr P followed in the car.

Intubation procedure

🦋 “Life can change in an instant, don’t be so worried about the future that you forget to celebrate what you have right now…” 🦋