Neurology ward-continued

November 2015 🇵🇱

The good news (mentioned in my previous post) I got that day was that there was a semi-private room available next door, and I was being moved 🙌. My physiotherapist, that worked mainly in the Neurology ward, but was coming to see me while in ICU brought us the good news. To be honest my dad would be asking her to help and move me every time he would see her. She worked there for years and agreed that Neurology ICU definitely wasn’t a place for me, so she was doing everything to get me out of there as quickly as possible …her name was also Ewa (like that favourite nurse of mine in ICU, must be a popular Polish name 🙉🇵🇱).

It was a side room with a space for two beds. I chose the space further in, beside the windows. At the beginning it was just me there, I think for one night before I got some company. The next day I was joined by (Krysia), she was this lovely woman who was suffering from bone marrow cancer, that spread around her body. She was constantly in pain and was on morphine to manage, but the good news is she’s now doing fine. We’ve made good friends with her! 👭

My typical day in Neurology ward wasn’t really much different to being an ICU patient. My breakfast, lunch and dinner consisted of Nutricia-this liquid fed to me through my PEG tube (in my stomach). I’m not sure if there was different flavours 🤷🏻‍♀️ not that this would matter 🤦🏻‍♀️. As long as it was filling my stomach, so I didn’t feel hungry that’s all that mattered. One evening a nurse came in (she would usually come at the same time every evening) to get my PEG feed started 🔛…dinner time! 🙄 After about an hour I could feel my stomach rumbling 🤔 and also some wetness on the sheet underneath me. I quickly got my dad to get the letter board to let him know 👀. When he uncovered the top sheet, he found me laying in a pool of lovely, thick liquid…😅🙄 The nurse obviously didn’t attach the tubes properly, so instead of being pumped into my stomach it was pumped onto my bed. No wonder I felt hungry 🤦🏻‍♀️🙄. Later we just laughed at it! Like at some other incidents, for example the first morning in that room before I had any visitors, I would be half sitting on the bed, alone, listening to my radio 📻☺️, “enjoying” my “lovely” liquid breakfast and I suddenly sneezed 🤧, the contraction in my core muscles brought me a little bit forward and to the side…so now I was leaning sideways without any ability to get myself fixed 🙉🙈😂🙄 There was no one in the room 😩, I couldn’t press the call bell (wasn’t moving anything yet, except my head a little), couldn’t call for help 😶 (still locked in🔒), so I just waited! Imagine that in your head…me leaning sideways looking like a complete moron-sounds funny I know, not being able to do anything-not so funny anymore! 🙄🤷🏻‍♀️🤦🏻‍♀️. Anyway I was rescued after awhile 😂 by a nurse who came into the room to check on me-Thank God 🙏.

Every morning I had physiotherapy with Ewa, the same as in ICU. Afterwards she would always call one of her physiotherapy students (who were there on a placement) to massage and just entertain me. She had three lovely girls (Edyta, Ania and Beata)-Yeah I know, I have a great memory! 💁🏻‍♀️ sometimes my dad laughs that perhaps it’s even better than before the stroke 🤪🤷🏻‍♀️? Edyta was the girl that would work with me most often 🤲. She would massage all of my limbs, one by one, while we “talked”. I was null by mouth, as you already know, but somehow we always managed to have a conversation. I would just blink my eyes once for YES and twice for NO. Anyway she understood me, most times. The three girls were all around my age, so we would have similar conversational interests 😂-BOYS haha! 🤷🏻‍♀️ Anyway the girls felt very comfortable opening up to me. I always wondered about that, because people would always find it easy to talk to me, open up and seek advice. Perhaps I could make a good psychologist? Even better back then, because all I could do was LISTEN 👂🏾…

🦋 The biggest communication problem is we do not listen to understand. We listen to reply. So LISTEN. People start to heal the moment they feel heard…🦋

In the afternoon my dad and Mr P would arrive to spend the day with me 🤗, always bearing gifts 💝 like a soup🍵, homemade with love by my grandmother 👵. Yummy 😋🤤

April 2020 🇮🇪

So it was my Birthday on Monday (28💁🏻‍♀️) 🎂🥳🥂! To be honest I don’t like my birthday since the injury, I’m never looking forward to it like I always used to. My birthday just reminds me that yet ANOTHER year has passed by, and I’m still not where I would like to be 😩🤦🏻‍♀️. I never thought that this journey would last so long! There’s a long list of things I wish I was doing on a day like this, and many things I would want to be different and of course thinking about those makes me feel upset 😞 but quickly I try to replace and change my thoughts. Instead of thinking about what WAS, I just try to focus on the positives…I am healthier than ever, the irony🤷🏻‍♀️🤦🏻‍♀️! Except the obvious physical barriers that we all know of! ♿️ I won’t use the word “disability”, because I hate it! Despite the fact I cannot really celebrate how I usually would 💃 (well to be completely honest this year wouldn’t be any different even if I was walking, because of this quarantine, so I’m not losing out-here’s sometimes positive 🤷🏻‍♀️😂😜) I am thinking that I’m surrounded by the people I love most, and I could spend this day with them 🎂w🥂! I received so many messages, gifts, flowers, donations to my birthday fundraiser for Acquired Brain Injury (ABI) Ireland, that I feel so loved ☺️🥰! I’m able to talk, I was able to celebrate with a drink, I was remembered and so much more…like one of my best friends said in her wishes to me “our party life was temporarily placed on hold, but the best is yet to come”. I agree and believe that best is yet to come… ❤️🦋 I think that LOVE is the most important thing in life and most people are richer than they think, because they are surrounded by love. I have to admit I’m very rich, rich with love😌🥰🤗…

🦋 There are people so poor that the only thing they have is money…🦋