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 🙌✌️🦋❤️!

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