Admission to Neurology ward

November 2015
The next (new) chapter on my journey to recovery…

I was being moved from ICU o the Neurology ward and suddenly my excitement was gone. I was crying 😢, when the nurses kissed and hugged me goodbye, not because I was upset, but because I was terrified of the unknown😰. The only thing that was keeping me hopeful was that this was a part of the process, getting me closer to being admitted to the rehabilitation centre. What I didn’t know was that I would spend another month or so being a patient here and that my biggest nightmare was about to begin. I know what you’re thinking!…how could things get any worse after the previous posts you read?! Well I’ll have you know that YES they could…😔😥 and they most certainly did! 😱

They wheeled me upstairs on the bed, my dad and Mr P followed, carrying bags with my stuff, but most importantly the radio 📻-that was the only essential, my treasure one could say 🙈😂🤷🏻‍♀️, the only item I cared about at the time…

I’m feeling terrified, but foolish to think it’ll be a change, a GOOD change perhaps – something exciting and new. It was an evening time, so my dad and Mr P wouldn’t be staying there with me for long (that was the biggest concern in my head ad the time). My bed is wheeled to this side room with a space for only two beds, with a doorway just in front of my bed. The doorway was leading into the main ward (around 6-7 beds). My eyesight was only reaching one bed in the main room, the one right in front of me 🛌 . There was just space for my bed and bedside locker, comparing to the huge private ICU room I was in previously, this was like a prison cubicle (even smaller🤦🏻‍♀️). A proper downgrade👎🙈🙉-it was like swapping a new class Mercedes for an old, small Fiat 126p (🇵🇱). Small, old room, with cracked walls, paint falling off the ceiling and walls. Weird noises coming from the patient behind the curtain, right beside me. He was just like 2 metres and only a curtain separated us. It was just me and him in that side room. I asked dad (via letter board 👀) to get a quick look when no one was around, he was a young enough guy with eyes closed, constantly moving his arms, legs and head, making noises, with a respirator pumping oxygen (this sound was reminding me continually of the time I was plugged to it in ICU)…I wanted to cry😩. I didn’t want to be there and I knew they were leaving soon, because it was getting late. The nurse on duty came to us and just explained how everything worked (she wasn’t very nice 👎). She also informed us that the patient beside me had a very serious, advanced brain tumour and this was an Intensive Care Neurology ward. Great! 🤦🏻‍♀️ From ICU to Neurology ICU – what an “upgrade” 🙄. Soon I’ll be left here alone…but I don’t know any nurses (I miss ICU-never thought I would say this 🙉🙄, but I knew all of the nurses and staff there, kind of formed a bond, and they were so good to me!) This is a nightmare, I can hear that guy beside me, and the place is so scary. I can see the terrified faces of both my dad and Mr P, but they’re helpless. My dad later told me that leaving me there that night was the toughest thing he had to do yet, constantly thinking about me on the way home and throughout the night. “We’ll be back here with you early tomorrow, hang in there”… while they both kissed me goodnight. I shed many tears that night 😢 AGAIN 🤷🏻‍♀️🤦🏻‍♀️ and I was so terrified, especially hearing my neighbour 🥺😒😨.

I open my eyes 👀 and it’s bright-it’s morning! – Thank God 🌤 the night is over! It’s a new day 🙂 and best of all I’ll see my dad and Mr P soon 🤗!!! Unfortunately that wasn’t the first thing I encountered that morning (to be continued…) Watch out for my next post coming soon!) ❤️🦋.

🦋 No matter what yesterday was like, birds always start the new day with a song…🦋

🦋 Every day is a NEW day. SMILE, STAY POSITIVE and GIVE YOUR BEST. Never Give Up, Miracles happen every day 🦋

🍧🇮🇪Jelly dessert/🇵🇱Kisiel🍧

🍓🍧😋
October 2015

The main doctor from neurology ward at the same hospital was sent to assess me👨🏼‍⚕️. A very nice older doctor, a positively charged man 👍👌. First doctor I actually liked 🤷🏻‍♀️. Still couldn’t talk, so I just listened…again! 👀😶😩

He was sent to assess me, because my body started showing some signs of awakening🤗, even though it wasn’t expected by any of the doctors.

The neurologist came into my room, assessing me from head to toes! I showed him what I could do-which wasn’t much… however few days ago I started noticing that I was regaining some control over my neck muscles 💪 . At first I had to move my chin to the side and the head would slowly follow. To best describe it I had to move my chin to the side, kind of opening my mouth in the process, to turn my head left and right. This required a lot of concentration and effort before I could do this more freely. He was astonished to see me do it, saying in a scientific language which part of my spine was working-I think he said “C 3 was working”, something like that… now I know that C1, C2 and C3 (first three cervical nerves) help to control head and neck movement 👇🤓👩‍🏫

This was important because they were thinking about moving me to a rehabilitation centre, the bad news was that in order to admit me I had to be a patient in a neurology ward first, and that unfortunately required waiting…🙄

Thinking about moving from ICU to Neurology ward was kind of exciting for me (I know! Something weird to get excited about, but hey! In the circumstances I was in that was an excitement🤷🏻‍♀️🤦🏻‍♀️). I would move environment and wouldn’t have to see these 4 walls of the ICU room anymore-I was stupid enough to think that Neurology ward would bring a change, when it was just another chapter-as you will read in my next post a bad one…probably my worst one! 😰

To come back to the title of my today’s post 🍧, this neurology doctor referred me for an MRI scan, because he wanted to review it, seeing any changes that took place since day one, especially that there were signs of movement in my neck/head. Next morning I was on my way to get the scan in another hospital 🏥 🚑. Getting me ready and transferred was so much easier now that I had tubes in me, not around me with machines needed. When I was going into the MRI scanning machine, I just remember having an oxygen bottle attached for breathing. Anyone who ever had an MRI scan knows well that it’s very unpleasant and uncomfortable. Feels like you’re in this small tube, very claustrophobic with very loud noises around during the scan. Anyway when I got back to the ICU in the late afternoon I was soo hungry…🙉🤤. I was always fed through the PEG tube in my stomach but for some reason the nurse on duty prepared a jelly for me🍧. I think they were doing that from time to time for a trial, to see if I’ll be able to swallow. And to my surprise 😱 she fed me the jelly and in only few seconds the whole bowl of it disappeared 🤷🏻‍♀️😋?! For the first time in weeks I was able to taste food in my mouth and eat it! My swallowing ability was there!!! 🤗 only liquids for now but wow. This was a breakthrough moment in my journey to recovery! Since this day my dad would bring me homemade soups every day 🍵 (puréed, but still 👌 🙌). My grandmother was so happy to cook them for me ❤️👵. They were so tasty…can’t describe it… 😋🥰

When I look back now, this was a really great day! Very important too! I appreciated it at the time but then I forgot about it..such a human thing to do🙄🤦🏻‍♀️. How many of you can honestly say, with hand on your heart, that when you sit down to eat anything you take the time to be grateful that you have food and that you’re able to eat it and enjoy it? I know that most never do, and I’m sure about that because it’s a natural thing to do. We have it therefore we take it for granted…🤷🏻‍♀️ I lost my ability to eat, so I know exactly what it’s like, yet I still lost myself somewhere, forgetting that and kind of taking it for granted again. But on Sunday I was having family dinner with my parents (like every Sunday) and I stopped, looked at them and said: “This is so delicious, I’m so glad I can eat”, my mum always says how lucky we’re to always have this amazing food on the table, to enjoy it with an amazing company of course 👨‍👩‍👧 and hey, don’t forget the glass of wine to go with it 😉👌🍷. I think we can all agree that food is one of the greatest pleasures in life #foodie 🥰😋. I’m happy I see things in a different light now, not only because of this traumatic experience but also because of being able to See clearer, See with a capital “S”, some of you will understand-were you ever in a situation where you’ve been talking to someone, they were listening to you but NOT HEARING YOU? Well it’s like that… Most of us live in blindness, becoming more spiritual (and spirituality isn’t necessarily about God-lesson one ✅) means Our eyes are opening 👁. I’m not trying to teach anyone, I am just speaking from my own personal experience and the people I observe around me. That’s another thing about becoming more spiritual that I’ve seen in myself-you become more of an observer, having less or no interest in judging others around you and also caring less about opinions of others! Listening to intelligent, spiritually awakened people changes your outlook and approach to life-a start to being a different, more spiritual human being…☺️

🦋 Sometimes we should express gratitude for the small and simple things, like the scent of the rain, the taste of your favourite food or the sound of a loved one’s voice 🦋

P.S. I think this pandemic isn’t the worst thing that happened… I treat it as opportunity to educate myself🤓, meditate more🧘🏻‍♀️ (as someone smart recently posted on their social media: if you can’t go outside, go inside), work on my blog✍️, improve my language (I’m learning Spanish 🇪🇸💃😜) and much more, while keeping up the physiotherapy with the help of my dad 💪 and taking care of myself, eating well 🥰👍. A lot (I mean A LOT) of garlic 🤭🙉🙈. Self-development is the road I’m currently on, as well as the road to recovery. Yesterday I downloaded/started this book by Dr Wayne Dyer with a title: “Change your thoughts, Change your life” and I already recommend it. It’s funny, but I don’t have time to get bored😂💁🏻‍♀️. #COVID-19

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💚ShiatsuwithTricia💚

You might think I’m crazy and laugh at me🙈🤷🏻‍♀️, but I’ve always believed in angels. I met many of them on my journey to recovery, but Tricia plays one of the biggest parts😇! I know that she’s one of my angels, sent onto my path for a reason…

September/October 2017

My grandmother in Poland 👵🇵🇱 was on the phone to my mum sometime in September 2017. She was talking about a programme she recently saw on television about Hyperbaric Oxygen Therapy and how it can benefit stroke victims. My mum quickly researched it after ending the phone call and found one in Dublin City Centre. We spoke about it and decided to book me in for a session. Next week I was already going there. My dad would collect me every morning from rehab at 12 o’clock and we drive me for the 1 o’clock session usually. The session lasted for an hour and then he would drive me back for like a month straight. The owner of the Hyperbaric Oxygen Chamber in the city centre is a lovely man. A motorcycle lover, that would always joke and make us all laugh before we went in-making our day better! Great guy with a huge heart of gold👴👌. I’ll never forget him! So one day, when I was waiting for my session to start , this woman comes in and I just can’t stop admiring her bag. Being the person I’m 🤷🏻‍♀️🤭 I had to say something, so I turn around and say: “I love your bag”, she smiles😊 and replies “oh thank you, my daughter bought it for me”. After the oxygen session she approached me in the chamber and asked for permission to touch my arm, while explaining what she does-Shiatsu therapist. Funny story, she actually asked my dad first, thinking he was my boyfriend 🙉🙈👌😜. I’ve never heard of shiatsu before this, but I tried acupuncture (shiatsu works a bit like that, but using hands instead of needles👌). As soon as she touched my arm, I felt so much happening! Flickers, pins and needles, butterflies you name it. After breathing pure oxygen straight for an hour your body is so awake and responsive. She felt it too! Saying my right (weaker) arm is so awake and active-great flow of energy🌟. My dad wheeled me outside to the car park, and she ran after us, and asked how old I was saying: “you’re way too young to be in this wheelchair”, while giving me her contact details. I was so glad🥰, because after what I felt in there, I was curious. I had this good feeling-when you know you’re chatting to someone Special. Next weekend I was already seeing Tricia my first treatment. That was back in 2018.

March 2020

Today (nearly 2 years later) I keep going for weekly sessions of shiatsu. Even when she moved further away (Wexford🙈🙉) I cannot really imagine my life without shiatsu now, most importantly without her constant treatments, help and advice. I fell in love with it, to the point I would like to learn the technique myself someday🥰. Also I created a great friendship with Tricia 👩‍❤️‍👩. A special bond and a friendship I hope to nurture for life. She’s more than just a therapist to me, and one of my biggest cheerleaders-along with her partner J. They’re both like my second pair of parents 😊🤗. I’m so lucky, not only I have great parents but another pair who are always there for me to help and support. Tricia always believed in me. From day one, not knowing much about me she said: “You WILL walk again”. We have a deal to go for a long walk 👣 and have a mutual party to dance and celebrate together🥂🥳💃. This WILL BE some party 🎉 I can’t wait! We have a lot in common but most of all being both fighters and survivors👊💪.

Tricia has told me on multiple occasions that she’s learning so much from me and that I’m one of the strongest people she knows. But to be completely honest that’s exactly what I think of her 🤷🏻‍♀️. So perhaps we were meant to meet? We don’t meet people by accident, they’re meant to cross our path for a reason. Our battles made us who we are today. Imagine being told by doctors that you have cancer and if you don’t do things their way (chemotherapy, radiation, etc.) you will die, yet you go completely against them and choose a holistic path to heal yourself. She had the courage and determination that’s worth the admiration, I think. Changing her lifestyle 360 degrees. I’m glad and happy to tell you that Tricia is cancer free today 🙌👏. Her battle ended in success. One thing I always admired about her is that she would never act like she lived with a cancer diagnosis… She’s an inspiration to me and transformed my life. My journey to recovery is so much better with her in it. She’s the one that introduced me to shiatsu, meditation, breath work-recently completing a breathing course in India 🇮🇳 , mind work and much more! I believe that her own battle made her the great therapist she’s today-that’s why I would recommend her to anyone without any hesitation.

She has a great knowledge about how the body and mind work and how it’s important to marry the two together. Anytime I have any problem regarding pain, anything and everything really, she’s ready and happy to help using her magic hands 🤲 and/or life experience. Shiatsu is an amazing treatment, but that’s not the only thing that helps me. It’s any advice or suggestions I get. They’re always very valuable to me.

Please check out pages (links attached below 👇) and share. Very interesting content, something for everyone. And give shiatsu a try! #ShiatsuIsForEveryone. I know that shiatsu will be a part of my life, for the rest of my life. I love that it’s all about giving and no one has ever become poor by giving. Someone smart once said “We make a living by what we make. We make a life by what we give” ❤️🦋

🦋 Success as a therapist is not found in doing something for the client, but rather being someone for the client 🦋

🦋 The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed 🦋

https://shiatsuwithtricia.com

https://www.facebook.com/shiatsuwithtricia/

https://www.instagram.com/shiatsuwithtricia/

Whenever Tricia is unavailable or I cannot travel up to see her for some reason I go for my treatment with Cindy @Ekko Therapies. Tricia introduced me to Cindy, who is another great shiatsu practitioner, who also has a story to tell… Ekko Therapies is located in Malahide, Co.Dublin and has a wide range of treatments available. If this location suits you better I really recommend it! I recently booked my mum to have a treatment-a birthday gift. She had shiatsu (for the first time) along with hot towel reflexology and she loved it! It’s a real treat for the body and mind, and Our body is a temple that deserves respect and taking great care of 💆‍♀️💆‍♂️🧘‍♀️🧘‍♂️. I’m attaching links to her pages below 👇

https://ekkotherapies.ie

https://www.facebook.com/ekkotherapies/

I think it’s very ironic, but the tougher the life situation, the more positive people are?! 🤔 Perhaps that positivity gives them the motivation and strength needed to keep going, keep fighting to overcome the odds… The best therapists (no offence to anyone) are those who fought some kind of battle themselves-I’m just speaking from my own experience over the past 4 years. These people really understand others and have a special type of empathy and approach towards life and others around them. As Rocky Balboa said in the movie: “It’s not about how hard you hit, but how hard you can get hit and still keep moving forward”… Life can kick us very hard, it always does at some point, but it’s about getting back up again and fighting. This is exactly what I’ve seen in the people I met on my path (who did just that) these are the people (angels) that I admire and take example from! 😇👊

Now on a lighter note, because we need to laugh and laughter is so important (a very powerful healer). I always laugh, in fact I rarely stop, especially when I’m around my dad… 👇😂

🦋 My therapist told me the way to achieve true inner peace is to finish what I start. So far I’ve finished two bags of M&Ms and a chocolate cake😋. I feel better already😂 🦋

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Tracheotomy and PEG

October 2015

After a few days in Intensive Care Unit (ICU) and me vomiting nearly every time I was being moved with that long tube irritating my throat, the doctors decided to carry out a tracheotomy procedure. It can be either temporary or permanent, where an opening in the neck is created in order to place a plastic tube into a person’s windpipe. This tube is inserted through a cut in the neck just below the vocal cords, which allows the air to enter the lungs. This decision was made to stop the irritation from the intubation tube (which is quick, life saving and temporary medical procedure that was done straight away in the ambulance to avoid choking). Also to look neater, reducing the amount of tubes that were attached to me at the time, but mainly to minimise the use of respirator, getting me used to breathing by myself again…well trying and praying 🙏

Anaesthesiologist put me to sleep for the tracheotomy procedure, but obviously something went wrong because I actually woke up during it. You might not believe me, I haven’t told this story to many people… I have a feeling they wouldn’t believe me anyway 🤦🏻‍♀️💁🏻‍♀️, thinking I’m crazy or making it up. I know…seems impossible or hard to believe but it really happened-I swear! I woke up and couldn’t feel any pain but I could feel the doctor inserting the plastic tube in my windpipe-very weird feeling. I couldn’t move or say anything, but I remember that I opened my eyes 👀. My face was covered with a cloth, so they couldn’t see that. You would think I was maybe hallucinating again, but how would you explain the fact I remember everything in detail, specifically them talking? (there was 2 doctors present) …“poor girl, so young and something so tragic happened to her…” I can recall that moment, as I remember it very well! I don’t know what happened afterwards…

When I opened my eyes again 👀 I saw one of my favourite nurses 😇 (Ewa) sitting by my bedside. She’s one of the people I’ll probably never forget. As I close my eyes, I can see her clearly. She was special and very passionate about her job-that’s something I really admire in people. She touched my heart, praying and being there with me, as she knew what was coming next. Sometime after the procedure it was time for a breathing test. A test that was crucial, and what I wasn’t really aware of at the time, the next few minutes there and then would determine my quality of life! The main doctor (who by the way told my dad just days before that I’ll always need a respirator🙄) came into my room to unplug me from the respirator. This was just a tryout, that I was expected to fail. The nurse (Ewa) prayed out loud by my bedside🙏, while watching me take each breath. In my head I was thinking, okay I needed the respirator to help me breathe, but now I’ll just start breathing on my own, as normal-didn’t think much of it. Shows how uneducated I was and how unaware of the severity of the situation. I was still breathing after few minutes 👀 and Ewa was smiling at me…😊this meant I wouldn’t need the respirator in my life and looking back today, this was so significant in my journey to recovery. I could easily be transported from A to B, in later days I could do physiotherapy sessions away from my bed, I could get baths, and so much more. Today I’m breathing on my own, of course still working on my breath, trying to constantly improve my lung capacity and core muscles. I say I lost my independence to stroke, but can you imagine how different my life would be if that day things went the other way?! 🙈🙉 Without even realising, in those early days in ICU, I took the first step to gaining back my independence. Breathing…something so simple, that we all take for granted each and everyday…but there’s people who depend on a respirator to be able to breathe. Are you still going to complain because you cannot go out to get your hair or nails done? 💇🏻‍♀️💅🏻

In the coming days in ICU, I had to do multiple inhalations to clear my lungs (as I mentioned before I had aspiration pneumonia) with special treatment to improve my breathing. My father would use his hand on my back 👋 to physically help me cough up, this was necessary as I was laying on my back throughout majority of the day. He and Mr P had to suction me every few minutes also, as saliva would gather in my mouth and/or trachea 🙄🤤.

Percutaneous endoscopic gastrostomy (PEG feed) was a much less eventful medical procedure. This was carried out just a few days after tracheotomy. I was put to sleep by anaesthesia and when I opened my eyes everything was as normal except one small, or BIG change. I didn’t have my nasogastric tube but a PEG feed in my stomach. This was a tube that was passed to my stomach through the abdominal wall, which was used for both feeding me food any fluids straight to my stomach, since oral intake wasn’t possible. I was now free from tubes plugged into machines 🤗 I could be transferred to a special “bath”, I’m using that word in inverted commas because it was like another bed, just narrower and deeper, into which I was transferred from bed using a special long board and sliding sheets and then transported into the ICU shower room. I could lay down in water and have my hair washed under running water-a luxury compared to bed baths 🙄🤦🏻‍♀️😂🚿🛀. Again something so simple that wasn’t possible the first few days in ICU…

For any medical procedures that required anaesthesia and also at night time they would still plug me into the respirator, just for safety. My dad didn’t know this, so the morning after I had tracheotomy done, the respirator was still on from the night. When my dad entered the building and heard that sound of the respirator pumping oxygen, coming from my room he got a serious fright. He thought “Oh God”, thinking I deteriorated during the night and the respirator was required again to keep me alive. Thank God that’s not the case! 🙏🦋

🦋 Focus on your breathing. 🦋

🦋 When you are stressed or upset your breathing becomes quick and shallow, which in turn causes other reactions in your body. 🦋

🦋 Some of these reactions are referred to as “fight or flight” syndrome 🦋

🦋 Breathing deeply and slowly instantly calms you down mentally as well as physically 🦋

P.S. Now something on the main subject worldwide today-the virus 🦠 🌍. This lockdown/quarantine is nothing compared to being locked inside your own body 🔒 (trust me, I know…😣🤦🏻‍♀️), so in simple words just get on with it, it won’t last forever and it’s only temporary. You can still eat, talk, use the toilet by yourself etc. Things we take for granted everyday, there’s so many things you can still do that I for example can’t🤷🏻‍♀️🥺…just think about that next time you complain about having to stay home and distance yourself… YOU CAN DO IT! #stayathome #COVID-19 #don’tpanic #staycalm 🤗✌️💋.

Really worth watching…food for thought! 🗣💨 Wasn’t he right back then about year 2020? #breathwork

Hallucinating

October 2015

I think it was my first night in the Intensive Care Unit (ICU), when I was hallucinating. I now know that I had morphine pumped into my bloodstream, so most likely this drug made me hallucinate…

It’s a funny story, but in the end it was really scary, when I actually thought I was dying…

I was in a private room attached to life supporting machines, as I mentioned before. The respirator was attached to a hole in my neck 🙄🙉🙈. That hole in the neck is called Tracheal intubation (simply intubation)-which is a placement of a flexible plastic tube into the trachea (windpipe) to maintain an open airway. That opening is usually used to give oxygen, and that was the main purpose of having it done for me personally. The respirator was attached in this way, helping me breathe. Anytime it became disconnected it would make this loud beeping sound to alert the nurses, so they could come and attach it again. Every time the respirator was detached it would make breathing harder, but not impossible. You will understand why this is important when I start describing my hallucination…

I was actually just laying on that ICU bed, but in my head there was a lot going on, A LOT! So I was recording a video clip and I was one of the backup dancers 👯 🤷🏻‍♀️💃. There was a very nice sports car 🚗 💨which I really admired, since I absolutely love cars😍! You won’t believe who was singing at the front, while I danced in the back…Nicky Minaj 💁🏽‍♀️💁🏼‍♀️🙈🙉…I know! Her of all people 😂 why not Drake or Maluma for example? 🥰💃. That’s the fun part of my hallucination, now off to the not so fun, scary part… Suddenly I wasn’t dancing in that videoclip anymore, but I was in the situation I was actually in. On that bed in ICU. I could hear that beeping noise of the respirator in the background, waiting for someone to come and fix it. No one was coming, and I started to feel that it was getting harder to breathe…I started panicking, because I was suffocating 😵 couldn’t catch any air!

🙉😂🤪

I was hallucinating that I was dying, I could literally feel myself not being able to breathe, suffocating on that ICU bed. There was no one coming to reattach my respirator…I could constantly hear it beeping in the background! Why was nobody there? Did they not care that I’m not able to breathe? That I’m on the verge of dying?,…😵😱 in my hallucination I opened my eyes 👀…I think I actually opened them, because I could see a male nurse standing in front of my bed, but he was just staring at me and the machine beeping away to alert him 🚨 that the respirator wasn’t plugged in properly. I couldn’t understand why he wasn’t doing anything, just watched me suffocating. I couldn’t even shout or move, even though I tried… I don’t know if I actually saw a nurse in my room or if it was all just my imagination…🤷🏻‍♀️ I just know that I’ve never seen him again, no male nurse worked in that ICU ward anyway, so this will just stay one BIG mystery. Anyway I’m not dead and obviously someone came in that time to reattach the respirator…? Or maybe this never happened…?

I know that I hallucinated a couple of times after this episode, but they were much shorter visions and I don’t remember them that well. They’re just very unclear memories in my head where I’ve opened my eyes to see nurses that actually worked there, perhaps just checking in on me at night, but I could just hear them talking or I’ve been seeing things around me that were never there?! Like more beds with patients in them, when I was alone in a private room🙉🤷🏻‍♀️… I don’t know, but I know that morphine is a very strong drug, that definitely makes you hallucinate…

I’m very aware that these type of drugs made me hallucinate and had many other negative side effects, but they kept me in this bubble where I felt a little bit indifferent, unaware of the severity of my situation…perhaps that was a good thing? 🤷🏻‍♀️🤔

🦋 You don’t always need a plan. Sometimes you just need to breathe, trust, let go and see what happens…🦋

Happy Mother’s Day to ALL mums! But especially to my Mum 💐❤️ That’s her at my age ☝️👈 and me today ☝️👉
❤️❤️💁🏻‍♀️💁🏻‍♀️

🦋 Don’t downgrade your dream to fit your reality. Upgrade your conviction to match your destiny 🦋

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My Dad, My Best Friend, My Hero…👨‍👧❤️

Family ❤️❤️❤️👨‍👩‍👧

Today is my Dad’s 50th, so I would like to dedicate this post to him. Happy Birthday Dad 🎂🥳🥂🎈! He is a Polish man born on Paddy’s Day-the irony 😂, even in the Guinness storehouse there’s a quote that says you’re only 100% Irish if you were born on March 17th 🤷🏻‍♀️☘️🇮🇪? By the way Happy St. Patrick’s Day 🍻 Sláinte!

I was always very close to my dad, since being a child-everyone would always say that I’m daddy’s girl 👧🏻💁🏻‍♀️. I was crying so much the day he left to go to Ireland, for me it was such a huge trauma as a 12 year old. That year without him around the house was awful, but me and my mum decided to join him and we moved to Ireland in summer 2005, when I was 13 years old. We had an amazing decade, enjoying time together, traveling around Ireland and going away for holidays. I’ll never forget the holidays with my parents…Portugal 🇵🇹, Crete 🇬🇷, Turkey 🇹🇷, France 🇫🇷, Italy 🇮🇹…they were the best holidays I ever had 👨‍👩‍👧😎! We were being tourists, we were sunbathing, making good food, eating out, drinking, laughing-everything you would do with your friends…I don’t actually see much of a difference. Few times we even went out together 💃🕺. I always loved spending time with my parents, we always have so much fun and we talk about everything and anything! If they were going to any party with their friends I would most likely be invited too, and loved going! 🤷🏻‍♀️💁🏻‍♀️. I never felt the age difference really, and if I was organising a party, like my 21st for example I would always invite my friends along with my parents’ friends. My parents’ friends are my friends and vice versa, that never changed. This life changing event then turned our life upside down when I was just 23…💣

I always had a special bond with my dad, never thought that we could get even closer…he was with me since the day I had the stroke, from the morning in ICU until I was going to sleep. He devoted himself to my recovery, putting his life on hold and took on the responsibility of caring for me. He’s probably the person that annoys me most at times 😝 and has his flaws, but don’t we all? When I’m around him I always laugh until my belly actually hurts and sometimes I cannot even catch my breath 🙉😂. It was always that way really, as he’s a joker, making people laugh.. I have many friends, but the relationship I have with my dad is the definition of friendship! He’s the person I feel most comfortable around, and even though caring for me should finish years ago, when I stopped being a kid, the circumstances forced us differently, onto this tough path…but we both believe that we’ll win this fight and then make up for the lost time👊💪. I always knew that he would do anything for me, but he’s now proving this every single day…he is my driver, my chef, my beautician, handyman, carer, my dad, my rock-everything in one! I don’t know how I’ll ever be able to pay you back for everything you did and do for me, but I’m trying my best, the way I can for now! He can actually do everything and fix anything…I’m serious! He made me standing frame from wood in the old days, a wall ladder, so I could practice standing at home-man of all trades! You were, are, and always will be the most important man in my life! I love You ❤️🦋 and I can honestly say that you’re The Best Dad any daughter could have/wish for…

I have to share this little anecdote with you all! One weekend when I was home my dad told me and my mum that he’s making a little food surprise for us for the evening. We just love experimenting with food 🥰😋🍽. He made homemade chips from celeriac in the air fryer, and we loved them so much that I asked him to make them again with Sunday dinner, the next day. He looked very disappointed because he didn’t have any more celeriac and was upset to tell me that unfortunately we don’t have any more, maybe next weekend. Then during the week when I was in rehab I receive this WhatsApp message from him saying: “I hope now we have enough!” 👇🙉😂👇

The image I got along with the message, he cracks me up ❤️😂 Next weekend at home we enjoyed a lot of celeriac chips 🍟

Or he sends me a picture like this saying: “With love for my two women”👇

Vegetarian pie❤️❤️ Isn’t he so caring and talented? He will kill me for showing all this 🤷🏻‍♀️🤫🤭

🦋Behind every great daughter is a truly amazing dad🦋

Both my parents sacrificed a lot for me and dedicated themselves to my recovery. Mum and Dad, your strength, support, positivity and belief means so much to me! I would be lost without you. You are the best parents in the world 👨‍👩‍👧❤️. Thank you for always being there and cheering me on! You give me the strength and motivation to keep going! 💪👊🙏👣. You are my backbone!

🦋Appreciate your parents, you never know what sacrifices they went through for you…parental love is the only love that is truly selfless, unconditional and forgiving…🦋

Had to share! We all do it…Very powerful, will make you think…#TimeIsPriceless

I’m going to start celebrations now! 🎂🥳🥂❤️🦋 Have an amazing day everyone! #StayAtHome 😉👍

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Where I was back then and where I am today…

Few months ago I made a list about all the changes that took place since the injury happened (I had to do that as my homework). I mean just on the physical level for now. Changes took place on every level of my life, but I’m just going to focus on one in this post (so how much time do we have?).. This excercise made me realise how much progress I have made since day one and how different my life could be. I could still be in that hospital bed, not being able to move or even worse! I have to learn how to celebrate every improvement I make, no matter how small it is. Well I’m getting better at that but it definitely requires so much work, given that I’m a perfectionist by nature 🤷🏻‍♀️ (I have to add that everyone I meet for the first time notices this about me-so I guess there’s no hiding it🤭🙉. Like everything it has positives and negatives. In the situation I’m in it’s probably working to my disadvantage 🤦🏻‍♀️. I have to strive for progress not perfection. Any progress is better than none, right? My progress is very slow unfortunately, yet steady. Deep inside I know and believe that this isn’t how my life will look, it’ll just take much longer than I expected… it just won’t happen today or tomorrow. Anyway coming back to that list, it took me over 2 hours 🙉 and I’m going to share it with you all now 👇

  • I was in Intensive Care Unit (ICU) right after my stroke on life support with a lot of different machines pumping medication into my blood stream to keep me alive-including morphine, which made me hallucinate (I’ll definitely come back to this, because it’s a funny story…). Today I am in an active rehabilitation Monday to Friday, in a nursing’s home brain injury unit. I go home every weekend and for holidays, like Christmas etc.
  • I had tracheotomy done to avoid choking and to plug in the respirator to help me breathe. I had to be suctioned every few minutes as I couldn’t swallow saliva. Now I can breathe on my own.
  • Percutaneous Endoscopic Gastrostomy (PEG)- feeding tube was put in my stomach as my swallowing ability was affected. I wasn’t able to eat nor drink. My swallowing is a 100% back now. I am able to eat and drink everything now. Feeding tube was therefore removed.
  • There is no danger of choking anymore and I’m breathing on my own, therefore trachea was removed.
  • This one is embarrassing 😣 but has to be posted, as I promised to be a 100% honest. I had a catheter and had to wear pads, whereas now I am fully continent. My bladder control has improved a lot. I would say it’s back to normal. I’m still working on my pelvic floor muscle strength but it’s continuing to get stronger. I was using a commode for toileting, now I use a toilet in my bathroom with a supporting frame around it.
  • I had no neck or head control whatsoever. I now hold my neck and head without a head rest, normally, just like You!
  • As I was bed bound I had to have blood thinners constantly injected into my stomach (ouch! 😫). That was stopped, as I’m moving more and have physiotherapy everyday.
  • At the beginning I had great trouble sleeping, I was praying for the night to end, sometimes begging for sleeping tablets. I couldn’t move anything so I was very uncomfortable and scared. I now sleep very well. I’m able to straighten my legs and move a little (from my side onto my back, to make myself comfortable and fall asleep again). I can press the call bell when I need assistance being turned in bed at night (at the start it was many times, then maybe twice per night, nowadays I don’t really get turned at all). I don’t need to take any sleeping pills, or any medication 🙌👌.
  • I had Locked-in Syndrome, I couldn’t move anything except blink my eyes. I couldn’t talk, so I used a special spelling board to communicate by blinking. I can now move every part of my body (some more than others) and I am able to talk. In fact I rarely stop talking 🙊 you wouldn’t want to get into an argument with me..my parents were always telling me that I should become a lawyer👩🏻‍💼🏛😂.
  • After 2 months lying in bed just having passive physiotherapy, I was put on a tilt table to get my body, especially heart used to being in a vertical/standing position. My blood flow was very poor so after few minutes my body, especially legs and feet would turn purple. That doesn’t happen anymore as my body is used to being up and standing.
  • When I started speaking (after 5-6 months of being null by mouth) my breathing was so shallow, and my core muscles so weak that I couldn’t say a word when sitting never mind when standing strapped in a frame. Now I can talk no matter what. My breathing still isn’t a 100% but it’s getting deeper as I go and as my core is getting stronger with exercises, both physical and breathing.
  • First time I stood strapped in a standing frame I felt weak and nearly collapsed, now I have no problem practicing standing (with support) for now!
  • I was transferred using a full body hoist. I progressed to using a standing turner with assistance of 2 people. My standing and balance improved, so I’m able to transfer with the assistance of one. I don’t need any help standing up anymore (used to need help being pulled up), I keep noticing that I’m able to pull myself up from lower positions (like 90 degrees, or lower). I don’t hyperextend my knees as much as I used to. Always getting that little bit stronger 🙌💪!
  • My left hand wasn’t moving at all. It’s now 75% back to normal, I use it to eat, drink, type, brush my teeth and much more. I can feed myself and hold things. I can lift heavier with it and it’s continually getting stronger. I would always need a lot of support on the elbow when lifting things or I would fall sideways. That doesn’t happen anymore.
  • My right (dominant) hand isn’t functional yet, however I can now move it, constantly working on it. I have more control over the fingers too. Since doing mirror therapy (I’ll post separately on that) it feels more a part of me and I have more control over it.
  • I started practicing writing with my left hand. My writing is improving and I can write legibly enough. My typing is much faster too.
  • My left leg and foot was always bit better than my right. I could make my toes move on my left foot but not really on the right one. Few weeks ago I managed to wiggle my right big toe. When doing standing, while supporting myself with an atlas frame I could lift my left foot to take a step forward/backward 👣. I’m now practicing walking in an atlas frame, lifting both feet actively.
  • The tone and spascisity in my body was always high. It’s decreased since.
  • I had a huge nystagmus (eye shaking), which really impacts on my vision, reading, focus etc., but it’s slowly settling down. It’s much better and less shaky now.
  • I couldn’t sit unsupported and was told I never would. Without a back rest I would fall back/sideways, whereas nowadays I sit unsupported at the edge of a plinth, just being supervised. My sitting balance and core control have improved massively, and continue to.
  • In the first few months after stroke I was left just lying in bed all day with people close to me spending time with me. I couldn’t leave the room or hospital. I couldn’t even sit out on a wheelchair. I’m now able to sit on the wheelchair, I’m home at the weekends and I can chat to my family and friends. I can change surroundings, socialise, chat, go out places etc. Now that I’m using my left hand I can use the iPad to entertain myself and stay updated. I can shop online and be in contact with people, also somehow in control.
  • I progressed from having bed baths to a bath lying down, to now having showers sitting up on a shower chair.
  • i have a powered chair now, that I drive/control with my left hand, increasing my independence.

Wow 😅 that was long🙉…and that’s just in a nutshell 🥜🙈, to let you know where I was then and where I am today! Now you must believe me this took so much time to write. Definitely made me realise how much progress I’ve made since, and how I just took that for granted. I never look back on what my life was back then in that hospital bed, and perhaps that’s a mistake? I’m not saying focus on the past, just acknowledge how far I’ve come…and I didn’t come this far, to only come this far…😉!

🦋 “When you face difficult times, know that challenges are not sent to destroy you. They’re sent to promote, increase and strengthen you. Every struggle in your life has shaped you to be the person you are today. Be thankful for the hard times, they can only make you stronger!” 🦋

When I was a patient in National Rehabilitation Centre (NRH) in Dún Laoghaire, there were these meetings with all the multi-disciplinary team: nurses, doctors, psychologist, occupational therapist, physiotherapist, speech and language therapist, me and my family. They all sat around this big round table and I would then be wheeled in. Everyone staring at me with pity in their eyes🙄… I hated those meetings. I only attended two, and after the second one I refused to have any more! All these experts in their field sit there and discuss your progress and future life…like seriously? I’m sitting there beside my parents and Mr P, listening to what I will or won’t be able to do?! 🙄 I wasn’t a fan after that first meeting, but after what I heard in the second one I decided I cannot put myself or my family through this again, NO WAY! We were sitting there listening to what my future will look like…I’ve cried before, during and after😢 I had a huge headache that day from crying. Nothing or no one has ever made me feel so low about myself. I was still kind of vulnerable at the time, but when I think about it now, it actually makes me feel so angry! 😤I heard a lot of negativity, but this particular thing I’ll never forget. I hope these people in particular will be reading this and reflect (you know who you are)… We’re in the meeting and my main doctor turns around to my parents and says: “Klaudia will probably never be able to sit unsupported, am I right in saying this?”, then she turns around to face my main physiotherapist, who replies (also to me and my parents): “Unfortunately, Klaudia won’t ever be able to sit unsupported, without the back rest”…now, at the time of course my eyes fill up with tears, losing hope, because they’re experts, who work with me nearly every day 😢. Through the tears, I mumble: “but I can improve” and now you’re not going to believe what we hear from my main doctor 👩‍⚕️. The exact words she used: “well, a rugby player can only improve until some point…” I’m speechless 😶. I couldn’t believe she said that and I still can’t believe it today. We were all so annoyed hearing that but we just stayed quiet. After the meeting, before speaking a word to me, I just saw Mr P, pulling my main doctor aside saying: “I’m sorry but I totally disagree…a rugby player, any athlete, in fact ANYONE can improve and will keep improving with time and effort. There’s no limits to improvement!”. I’m so glad he said that to her, because later that day she came and apologised to me. I’m hoping no one will have to hear that again, 🤔think before you speak😒?! Apology accepted, however I was firm on my decision that I’ll never have another meeting. My parents totally supported my decision. Why would I go through that again? Today, looking back I’m just angry with myself that I gave someone that power to upset me and their words affect me 🤷🏻‍♀️😩🙄. I regret shedding so many tears, being too vulnerable and believing everything I heard, letting people get to me somehow…but don’t dwell on those who brought you down, cherish those who hood you up 🥰☺️. I have the ability to sit unsupported and I’m still improving every day 👊💪. So yet again any predictions 🔮 professionals made, didn’t come true. I’m that bit stronger and smarter today. Never again will I give anyone even the opportunity to tell me what I will or won’t be able to do ❌🛑! Only positivity accepted in my life, any negativity isn’t welcome, and I decide that because it’s my life…Love yourself, embrace your flaws, and never let the opinions of others affect your self confidence. YOU ARE ENOUGH 🙌✌️🦋❤️!

When your legs don’t work like they used to before…

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Happy Friday the 13th! Stay safe, don’t cough! #Corona

🗝Imagination creates reality🗝

March 2020Welcome to my first post, that doesn’t go back in time👋😊

Catching up on 4 years of journey is too much to post about, before posting here and now. Initially I thought I would go back in time first, but I would like to connect with you in the present moment too, of course while telling you the story from day one.

So my mum sent me this video from Neville Goddard’s book, about the power of imagination and how it can create reality (👇link attached below), if you’re interested in watching-it’s worth it. I would definitely recommend it, and taking the time to listen and really understand the message! I have done all the hard work for you and I’ll share some statements taken straight from the video, that I think were eye-opening. I studied this video in great detail and listened to it multiple times. I love watching videos that teach you something and leave you thinking… I could really resonate with his words, I’m sure that you will too. These words only reassured me, making me believe more that we have this extraordinary power to create, first in our imagination. We don’t realise this because it sounds bazaar or you could say “absurd”, but it worked for so many people, so why not try it? Me or You have nothing to lose…?!

“Your own wonderful human imagination (creative power) is your saviour. If you’re thirsty water would be your saviour. If you need a job, employment would be your saviour. Your imagination is the power to save you from whatever circumstances you now find yourself in...”

Nothing is impossible to your imagination. It’s unlimited in what it can accomplish. If you can imagine something, you can achieve it…”

To use your imagination creatively:

1. Sit comfortably and relax, close your eyes

2. First determine what it is you wish to experience

3. Bring to mind what it is you desire

4. After you open your eyes, go about your normal natural affairs, confident that what you’ve just done must come about in your world.

More detailed description in the video

“You have just planted a seed, and you’ll soon see the harvest…” 🌱🌹

“You must make then-now and make there-here…”

“What you do in imagination isn’t a daydream. That what you experience in imagination is an actual creative act. It’s a fact in 4D space and WILL make its appearance in this 3D world, just as surely as planting a seed will resolve in a growth of a particular plant…”

“Each seed that you plant in your mind has its own appointed time, feel confident that what you’ve planted will happen in your world-never doubt it…”

“Your only responsibility is to remain faithful to your imaginational act, until you experience it in your outer world. Repeat the act each night, before falling asleep…”

“You must be persistent…”

Give thanks that your desire is already an accomplished act…”

“Nothing is impossible…”

Very good explanation in the video

You can obtain anything you desire, because nothing is impossible to the creative power that resides within you, there’s no limit to what you can accomplish for yourself and/or others …”

“It doesn’t matter what your current circumstances are…”

“God imagined the world into being and became that which he conceived-main creative principle…”

“If you’re experiencing any unwanted condition/s in your life you have either subconsciously or unconsciously brought these into your experience. Thought, belief and imagination has created our individual worlds-majority of people do not believe that…”

Very well explained in the video

“We imagine situations that match our beliefs…”

There’s nothing and no one to change, but the ideas from which you think…”

“You CAN change your beliefs and so change the circumstances of your life…”

“If you want to change your world, you MUST change your beliefs…”

“The conscious mind forms beliefs and opinions from the evidence of the senses or the perceived outer world…”

“You cannot allow negative emotions to fill your mind, without suffering the consequences of the state with which those emotions are joined. Fear of loss brings loss into your world…”

“Whenever I say I AM, I AM is creating something…”

IFs are always followed by something negative, and that is simply doubt creeping in to steal the good seed we have planted…Remove the word IF from your vocabulary”

“For example getting well is not being well, I MUST BELIEVE that I AM already what I want to be…”

Watch every word you say and make it conform to what you wish to bring into your life, eventually you’ll have faith that what you’re stating, though there’s no outer evidence to support it, is a fact in consciousness that will project itself, so that you may experience it in the outer…”

You’re free to choose the state you’ll occupy, therefore it’s important to determine the ideas from which you think. Any concept that is accepted as true WILL externalise itself in your outer world. Choices on which you’ll focus your attention upon is the only free will that you can exercise…”

“Don’t accept your current situation as final…”

“People around you may be quick to point out that you’re being unrealistic when you mention a desire that appears difficult or impossible to reach, we SHOULD all be unrealistic in the face of the army of doubt, to experience our wish fulfilled…”

Habit is the only thing that keeps our thoughts moving along the old, familiar, negative path. No one can change your patterns and life but YOU…”

“The outer world is the reflection of the inner…”

“As Shakespeare said “all the world is a stage, and all the men and women merely players” they have their exits and their entrances, and each man in his time plays its part…”

“Everyone who appears in your world is God playing that part for you-the author. Each of us is writing his/her own script, if you’re dissatisfied with the play it’s up to you to re-write the script...”

“If there’s someone in your world who is of annoyance or irritation to you, that person has no choice but to play the part called for in your script. There’s nothing you can do on the outside to bring about changes in the other…”

Probably my favourite statement from the video

“You can change the script on a daily basis, by revising the scenes that didn’t please you…”

I can’t hide that my imagination and belief (faith in achieving the goal) are probably two most important qualities I lack on my journey to recovery, but I’m working on it! I believe that everything has its time in life and no matter how many people tell you or try to persuade you, nothing will happen until you’re ready for it. You have to grow and mature to take up a certain path. I know this from my own experience, I heard about meditation so many times before I actually started practicing it. I’ve decided that this year will be about me working on my mind. I’m going to practice this imagery every night before going to sleep and start believing in my goal a 100%. I do stay positive and even though I say that I will walk, I can say (with hand on my heart) that I don’t believe in it entirely and I doubt myself sometimes (which is only human)…but that’s just another thing that needs a change. Sometimes I feel silly telling people what I want to achieve but if you think about it you should never let others tell you what you cannot do, it’s only their limitations not yours! I am not afraid to say that I’m going to take steps and walk this year! It doesn’t matter if it’s December, that’s still 2020, right? I’m still the same Klaudia, but the journey I’m on definitely changed my outlook on life, in so many ways. It’s crazy! I’m so lucky to have the cognitive abilities that were not affected, this means I still have that wonderful power of imagination that I can use in the process of recovery. I don’t always realise how important that is…I need to learn how to use and appreciate what I still have. That mental independence and the ability to think is perhaps a huge help and key to succeeding…I have and also you have the ability to plant the desire in our minds, watching it sprout and grow. Don’t forget to water this plant everyday by working the imagination!

On Thursday, January 30th, for the first time I walked the length of the gym, with 3 physiotherapists and a support of an atlas frame, but that’s a start 👣👊💪👍! I decided to have an unshakable belief in achieving my goals this year, and I’m already taking steps 🙉🙈🙊this must really work!? When my physiotherapist said we’re going to try taking steps next time in physio session it felt like a dream come true! Power of attraction? Perhaps… I promised myself I’ll celebrate every improvement, no matter how small, so cheers! 🥳🍷 I’m having wine this weekend! 😜 There’s no video as we were all too focused and I was very nervous, but I promise to record it very soon.

🦋 “Don’t let others tell you what you can’t do. Don’t let the limitations of others limit your vision. If you can remove your self-doubt and believe in yourself, you can achieve what you never thought possible…” 🦋

For more videos subscribe to this group on YouTube-School of Imagination

I would like to take this opportunity to wish all the women out there a Happy International Women’s Day!!! 💁🏻‍♀️💁🏼‍♀️💁🏽‍♀️💁🏾‍♀️💁🏿‍♀️💐💐💐💐💐. Let’s all be that woman who always fixes another woman’s crown 👑, without ever telling the world it was crooked…!

🇵🇱

My typical day in Intensive Care Unit

October 2015

Typical ICU room with Llife-supporting machines

4 years ago this was my routine as locked-in ICU patient:

  • Morning: Every morning very early around 5-6am, a nurse would come to collect my blood samples. I had a central line in my neck and hand (until today I have souvenirs where they were-I call them my War scars😝🙉👊💪 and I actually have more of those but I’ll come back to that). Few samples would be collected EVERY morning, and the laboratory would then collect them. When I heard the sound of high heels approaching I felt a huge relief because that was my psychologist coming to see me, which meant that it was morning (7am), and the night was over! The nights were the worst, because I couldn’t sleep and was so uncomfortable. Scared, praying it was morning already 🙏. Every night… At least during the day more was happening, at night the place was dark and very quiet. I couldn’t let anyone know I needed to change position, or move, so I just kept waiting with my eyes wide opened 👀. I was locked inside my body, so the psychologist would talk, while I just listened. She was a little bit mad, always dressed colourfully with heavy makeup on. I mean pink lips, green eyeshadow, the whole shebang 😹 (the Irishness in me is coming out now, using this “sheabang” expression 🙈🙉🙊). I don’t remember all of our sessions but she did a lot of relaxation, where I would close my eyes and she would read out a piece, painting a picture for me to imagine in my head-like imagine you are on a beach hearing the waves…I tried! But unfortunately I was far away from being on a beach 🛏 she also talked a lot about angels. I loved that part🥰! Overall she was a very positive person that made me feel better, but most of all she would keep me occupied for about an hour. I looked forward to that the most. When she left it was quiet again, which I hated. I was always a person that loved socialising and company…my friends would describe me as “life of the party” 💃🥂, so this situation was very different. I probably needed company most while laying in that ICU bed…Around 9am the nurses would come in to do my morning care and get me ready for the eventful day ahead, by eventful I mean that many things would happen, not like to a healthy 23 year old (going to work, driving, meeting friends, eating dinner, even things as simple as going to the toilet by yourself or walk places), but to a 23 year old ICU patient…Everytime the nurses would turn me during my morning care I would vomit, because the tube I had inside my throat (that I had since being intubated-used to plug in the respirator) would irritate me, causing gag reflex! That would always be a great start to my day 🤦🏻‍♀️🤷🏻‍♀️. Sometimes the nurses would change the bed sheets, but then they would have to move me around, so I would vomit again and the bed sheets would have to get changed yet again 🤦🏻‍♀️🤷🏻‍♀️. At the very beginning I would just get bed baths, because of all the tubes I had attached to me-I mean everywhere🙉🤦🏻‍♀️…My hair would get washed using this special cap that the nurses would put over my head and as you started moving the fingers the cap would start releasing shampoo. It would be then rinsed over a basin, with me laying flat on the bed. When I was all washed and changed my feed was plugged by my main nurse, who would take care of me for the day. That’s what was great about ICU, the care was very personal and patient oriented. I always had my own nurse for the day, and I knew them all very well. They were so lovely and caring, but that fairytale quickly ended, once I was moved to a different ward. The good news about that was that I was in a stable condition but the bad news is that then a real nightmare began (but I’ll come back to this in later posts). I had nasal feeding tube, since I wasn’t able to swallow anything. I was receiving all liquids through that. I had multiple syringes on a special stand beside my bed, they were constantly pumping into my bloodstream. As I mentioned before to this day I’m not sure of everything that was in them. I just know there was some blood thinners and probably some mood enhancers too…every time one of these syringes would become empty, the machine would make a beeping noise and a nurse would come into my room to refill it straight away. After my morning care and everything plugged in and refilled I was by myself again…waiting…My physiotherapist would be the next person I would see. She would usually come around 10-11am and do passive exercises with me. I used to really like her because she was very positive and passionate about her job. She would always turn up the volume on the radio💃 and try her best to communicate with me. She was always telling me how much she loved her job and she would spend a long time with me, moving my every limb one by one in great detail, never rushing. Before leaving she would always spray some perfume on me saying “us women need to smell nice” smiling! 👌😍☺️. I loved the fact she didn’t treat me any different, and believe it or not even though I was nill by mouth, we always had conversations…she would talk, and I would blink!
  • Afternoon: From midday I would just lay there alone staring at the wall and that clock⏰every few seconds, looking forward to my dad and Mr P coming to spend the day with me. Thank God the radio was on, because the silence would just kill me. I always loved music, and somehow hearing the music or the radio host made me feel like I wasn’t alone📻! When I could hear the front door open and then the sink running, I was so happy. They were here! 🤗 Mr P would always come in first with a huge smile on his face as soon as he seen me. My dad was the next person to enter 🥰 always giving me a kiss on the forehead/cheek. I felt so loved by them and so happy to have them there. We developed a special way of communicating, so sometimes we wouldn’t even have to use the letter board. For example I would just blink really fast if I felt too warm, so Mr P or my dad would wet a cloth with cold water and put it on my forehead, changing it every few minutes. I guess it really is possible to “understand someone without words”🤐-it’s not just a saying… They were keeping me entertained and learnt how to do basic care, like suctioning (which had to be done pretty often), asking the nurses to empty my catheter or repositioning me from laying on my back to being on my side and so on. Getting me a little more comfortable! In the afternoon around 4pm, I had a private physiotherapist coming to do a one hour session with me. In that time Mr P and my dad would go out to the nearest shopping centre, sometimes restaurant to get something to eat. I absolutely hated seeing them leave and would always ask them via the letter board to be as fast as they can, making them promise me that they wouldn’t be long. Usually they would be back just as my session was finishing, but sometimes I would wait for them, counting down the seconds again⏰. I just couldn’t bare being alone…Usually they would come back with fancy freshly squeezed juices🥤,one for me too. They would feed me bit by bit with a small syringe onto my tongue, but I was hardly swallowing anything. I was so jealous looking at them being able to drink, even if it was just plain water. I was always observing them, wondering if I’ll ever be able to do that again… I really missed feeling the different tastes…🥺
  • Evening: In the evening Mr P and my dad would just sit there with me, anytime I needed something I would look at them and blink, so they would grab the letter board, pen and the notepad. They would also do some passive exercises with me, because I needed my legs to be moved. When my mum was in Poland she would also be there with them all day. She would work on my feet-doing some reflexology or read to me. The first book that she was reading to me was “The Secret”-I would try to take it all in, and I loved hearing the successful recovery stories. I think that without even realising, subconsciously that book was keeping me hopeful and positive. The rest of my family would come to visit me some days for awhile, always trying to make me smile. Mr P set up WhatsApp group chat with my girlfriends back in Ireland and kept them updated every day. When it was getting late and it was time for going to bed, usually around 11pm, my dad and Mr P would position me to sleep and literally do everything before leaving and turning my light off. “Goodnight, sleep well! We love you and we will see you tomorrow❤️”. Probably every time they left the room I would shed a few tears😢🥺. Don’t get me wrong I felt very safe in ICU, the staff there were great and very caring but I felt lonely and terrified, having strangers care for me. Sleeping there instead of my own bed, staying in that room alone for the night, knowing that my family are together in my grandmother’s house, having food and drinks before going to their comfortable beds, was the image I had constantly on my mind…really wanted to be there with them!
  • Night: I couldn’t sleep for the first few days in ICU, until I was prescribed sleeping pills-that I would beg for. I would just keep my eyes wide open 👀 and stare at the wall. The room wasn’t pitch black, I had a little wall lamp on, for nurses and doctors that would come in during the night to fix something or check on me. All the machines and monitors around my bed had little lights on at all times anyway. Sometimes I would be lucky enough to fall asleep but I couldn’t tell for how long. I can’t really tell if I was sleeping or just imagining with my eyes closed🤷🏻‍♀️. Funny story that I’ll never forget – every time I was dreaming I dreamt about going to the big Tesco near to my house in Ireland, with a big trolley to the drinks isle, and put every type of bottled soda in my shopping trolley🛒. Lucozade pink, Coca-cola, 7up, orange juice, you name it…and I would go back home and pour myself a huge pint glass of each drink with ice, downing one by one, one after the other😂🙉🙈. I would always wake up very thirsty 🤤 the nurse would make me raspberry tea and feed it to my mouth when it was cooler through a small syringe💉 . Most of it would just flow out of my mouth, since I didn’t know how to swallow, made me cough a good bit too, but it was worth it. Even just feeling it on my tongue. Other times when I would open my eyes I could see the night doctor smiling at me, with a stethoscope around his neck, looking at the monitor, at all my OBS(observatory machines)-like blood pressure, body temperature, heart rate, oxygen concentration in the blood, etc. I also remember having this sensor clipped onto my ear, I don’t know what that was for but anytime it fell it would start making a noise. Usually someone would hear it and quickly come to put it back. One night it fell from my ear and started making this loud beeping noise, but no one was coming. I also remember there was a camera facing me, so that I could be observed from the nurses station. That night I would keep blinking at it very fast, hoping to get someone’s attention…unfortunately I didn’t. So I would just lay there, that noise getting to my head 🤕 after a long time a nurse was passing by my room, heard it and came in to fix it. Ugh what a relief! That time I could really appreciate the silence…
It must have been all that shopping and drinking in my dreams, because I regained my swallowing ability first…

🦋 There’s nothing stronger than a broken girl rebuilding herself…🦋

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👁 Letter board 👁

I allowed myself to use the cartoon above with Kate Allatt’s permission. She was using that image in her slides, so people could understand the situation better. I had a very similar story to hers, using the letter board and I needed a good image to represent that☝️👌.

My father made letter board at home just after a few days. It was very simple with just letters A to Z in four separate rows. There was 4 rows:

  • Row 1: A B C D E F
  • Row 2: G H I J K L
  • Row 3: M N O P Q R
  • Row 4: S T U V W X Y Z

They would point at a row first, when it had the letter I wanted-I would blink once for YES, then for a specific letter I would blink again to let them know that was the letter I wanted, and then they would write it down on a notepad. This way I could spell out anything I wanted to communicate and they could read what I was trying to say. Anytime a sentence was said by by family, like “are you cold?” I would blink once for YES and twice for NO. The ability to roll my eyes was very useful too 🙄, in this way I could easily let Mr P know that he was being a moron haha😂🙉, or anytime I heard something I thought was ridiculous! I didn’t really use the letter board with anybody else, so nurses, doctors and any other people would talk and I was just listening…sometimes they would just talk like I wasn’t even there 🤦🏻‍♀️ that was very frustrating…

A 5-letter word that could make all the difference! 🤦🏻‍♀️😂

First time I used the board with Mr P, I was trying to spell out TOO WARM, not thinking that there could be a problem. Mr P starts pointing at the rows and I blink when his finger reaches the last row, because that’s where letter T is. It wasn’t the involuntary blink that we naturally make every few seconds but an exaggerated one. I blink again when he points to letter T and so on…until I spell T-O-O, here I pause because I realise that there’s no way of communicating that this word ends and I want to spell another one 🙉. Mr P looks at me all confused, so I decide to keep going. He ends up with T-O-O-W on the notepad…looks at me smiling “Klaudia you must be going crazy, there’s no such word”…at that moment I’m fuming inside 😤. I’m thinking what do I do now?! This took about an hour of me repeating blinking and rolling my eyes. Mr P finally figured it out. Oh my God! After this the word “space” was added at the bottom of the letter board-I made sure of that! I thought I was going to kill him, when I saw him making the same mistake over and over again🙄, that wasn’t making any sense…I was screaming inside😡! If only I could tell him then and there that I was too warm🥵, so they could open the window a little for some fresh air. Something that should take like 3 seconds took nearly an hour 🤦🏻‍♀️. Few months later this situation was the main subject for us all making jokes 😂, but I can tell you now it wasn’t so funny to me at the time…Kate Allatt had a very similar experience (hence the cartoon above), when trying to spell out LEG CRAMP to her husband and he kept getting L-E-G-C, which wasn’t making any sense, making Kate look like she was insane. When we met we laughed about it, we could so relate to one another. So as you can tell the word SPACE or END WORD are essential and need to be included on a letter board, when commutating with a locked-in person…that one simple word can make life so much easier! I’ve come across some brilliant communication boards that would already have phrases that are commonly used like “That’s not what I meant”, “need”, “and” etc., which could save so much time. My board was homemade and very simple with just letters and then SPACE of course 😂 so it was taking me ages to spell out a sentence…I’m so glad I can talk because I’m a huge talker (I rarely stop 🙊), and that time being locked-in was unimaginable…to be honest I don’t want to remember that!

If you’re looking after someone with a locked in syndrome, please take these things into account for improved communication. Communication is so important! I’m now speaking for people that don’t have a voice, and that letter board is their only option…👁🤐Treat them how you would like to be treated, because with this type of injury specifically we know that the brain cognition isn’t even a tiny bit affected and I know when you’re a locked in patient you need someone to be your voice, support, advocate..Nothing annoyed me more than people around me treating me like I was different, or like an egg that you don’t want to drop because you’re afraid it’ll fall and crack-tiptoeing around…I wished at the time that I could scream “I AM STILL ME”, just needed that extra support and for someone to be my voice, while I don’t have it. If you’re reading this and you’re still very locked in, believe that you will get your voice back! Don’t lose hope, I was told I would never talk again, like many other survivors, yet today they’re motivational speakers and never shut up🤭😂! I also know of survivors who never got their voice back but are still very successful, writing books, blogs with eye-gaze technology, using their eyes to communicate with the world. They found a way of using their voice even if they don’t physically have it, and that’s brave and inspirational! Some people have a voice and don’t put it to use-staying quiet🤐, while some wish they did have a voice, and even though they are non-verbal they still manage to make a change in many lives…

🦋 “The way I see it, if you want the rainbow, you gotta put up with the rain…” 🦋

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