It’s been about a week since I’ve left the hospital. I still can’t fully articulate and comprehend some things, but considering my journals are for my future self / memory logs, I should probably write something to read back on one day.

Around two weeks ago, I was feeling really rubbish. Feeling rubbish is like a low-key baseline for me but this time I felt particularly rubbish. Having all the symptoms of the flu, I thought maybe I caught the winter bug as I’ve always said I have the immune system of a Victorian peasant. I just carried on for a few days but then I thought to myself the smart thing to do would be to contact a professional as I was vomiting non-stop daily, and the fact that I have a couple of life-threatening underlining illnesses.

I had went in to see my renal team as it’s been a while, and I get lost in my work. I went in to get my bloods done and to see all the familiar faces that make the experience much better every time. The next day I get a call to say I should go urgently to A&E as my markers were all over the place and I needed fluid as I was severely dehydrated for days. I absolutely never take the suggested advice of calling an ambulance because I’m just not that type of person. I don’t know, I feel like ambulances are for people bleeding out or those type of emergencies. I just always feel like it’s so unnecessary even though all the people on my medical teams suggest to take this route.

It always triggers a memory from my childhood. I grew up part-time in the Irish countryside and one time these travellers settled in the area. There was a short trend of stories of them calling the ambulance and then jumping out / using it as public transport essentially. And just other times I would hear stories of people using ambulances and I just feel like it’s such a waste of public resources if you can sit in a car / find a way there just as quick? So yeah, ambulance to me is just not really an option unless I am dying on the spot 😅

Anyway, moving on swiftly, my friend dropped me off to the A&E and what I thought would be the usual pain of getting IV fluids and told maybe I have a flu, turned out to be a 32 hour excursion the Accident & Emergency unit. A&E has its perks and cons… I like that it is more accessible as it is 24/7. It’s much more enjoyable when you have a bed and you are allowed company out of the traditional hospital hours. You can walk around in the middle of the night and that’s never about feeling for an introverted insomniac. The cons of which are probably the uncertainty of what’s going on because it’s such a chaotic environment and everyone is so busy and you’re just sitting there waiting for bad news. It’s also impossible to sleep. Regardless of being completely sleep deprived for over a day in the A&E, I just remained grateful that I wasn’t in London in some random corridor or still crowded in the waiting room. I once got sepsis in London so thankfully never had to experience the sleeping-in-the-corridor madness. Also, the Isle of Man has the best hospital staff hands down. I sure love my fellow “come-overs” 🤣

Eventually, I get moved into the acute ward thinking I’ve just been admitted in for a couple of days because I must need extra fluids due to my underlining stuff and the severity of how sick I was. Those days seem like a blur now. I do remember every day being absolutely awful. Feeling guilty about work, wondering why I am here so long and nobody knows anything, still not being able to sleep or eat. I’ve always struggled with resting, but being in hospital makes it more depressing.

Some of the girls came together and really showed up for me which I was not used to. They packed me spare clothes, the essentials, brought me snacks and their comfort. It is still quite overwhelming and a type of love I have never experienced, but cherish. I’ve always navigator these things on my own but in general, I prefer to do things alone. Suddenly having people in situations and environments that you are not used to, is heartwarming but also overwhelming. To think these ladies were one strangers brought together by my business and have formed their own close friend group, reminds me why I do what I do and how I keep going. These women have sat and absorbed the shock with me, wiped my tears, really tried everything to make my situation a bit better. I am forever grateful.

I thought by the weekend I was going home but clearly not. I thought maybe it’s because I still wasn’t eating or sleeping much. Every day was just as ambiguous as the next. They had to take my blood every day to see my progress but taking blood has always been a challenge and traumatic for me. I think it is stemmed from childhood trauma. I remember getting injections and vaccines as a small child and just howling and screaming and crying hysterically with my mom being frustrated, pinning me down and being angry because I wouldn’t sit still and I was just crying hysterically. I still feel the same fear every time but I have a favourite phlebotomist and the staff usually know how anxious I get, so they are extra gentle and kind. It’s just super annoying because while I’m anxious and sweating and spazzing out, in general my veins are tiny so it makes the situation all that crap. Really can they take my blood in the first attempt, and it involves a lot of pain and machines. Safe to say I was looking forward to leaving and just getting back into my normal routine. The weekend came and just when I thought I was being told I was being released at the start of the week, I was being told I was moving to a more permanent ward instead. I knew something wasn’t right just by educated guess.

Ward 1 has always been my favourite. I get to explore the hospital in the middle of the night, and feel like the main protagonist in the movie “Night at the Museum”. The nurses and doctors are always so kind and accommodating. I love the little yard they have in the ward where you can sit in the sun by the rose bushes. I’m such a night person that I find these environments quite peaceful and enjoyable. My friend’s artwork is also for display and sale which is always a favourite every time I’m staying in the hospital or going to appointments. Look how amazing these pieces are??

My phone had ended and I had a new location. I don’t know if it is on my file or someone is looking out for me, but I always get my own ensuite to which I am forever grateful for. I think it’s the panic attacks to be fair and my age haha. One time when I first moved to the island, I had to stay in the hospital in a shared ward space and at 3am, this elderly lady opened my curtains and was talking to me in the middle of the night. She was sleepwalking but it freaked me out and luckily ever since I have always been in my own ensuite. I’ve always thrived better alone. I also enjoy my own privacy. I didn’t really do the sleeping over thing growing up, and on the few times I did, I just wanted to be in my own room and by myself and hated the experience 🤣 At best, I have shared a hotel room but yeah, introverted through and through.

It was actually a gorgeous weekend things to climate change and it being warm and sunny in October. I’m not complaining, I’m enjoying it before we get into the worst winter ever. The hospital grounds are stunning over the weekend. The place is peacefully empty to the public, the hectic car park is completely empty, and you can really appreciate the views around you. I really love in the summer when you can see all the bunnies hopping around the entire area.

My doctor treats my case as a “special case”, and so he visited me on the weekend. I really love my main doctor. He is such a dad in the sense that he holds my hand when I’m crying and getting bloods, he always encourages me and my business, and reassures me in general. I feel so lucky and appreciative to have a main doctor like this. The same with his team of nurses around him who also make up my team as a whole. Anyway, he comes into the room with my favourite head nurses (she who is mother-like also) and I noticed immediately something is off. I’ve always been hyperviligent like that and this time was no different. It started off with the usual stuff, I forgot the idea of going home at this point, and just at the end my doctor tells me that my condition has worsened and I need to undergo a procedure to save my life.

A part of me sort of dissociated, the other part of me it still didn’t sync in yet. I’m thinking to myself “I knew I had to do similar in the new year, probably, so maybe he wants it done in a couple months or so”. Like the idiot, I am, of course my next sentence was to ask him when he wanted me to do this procedure and what he means by “soon”. That’s the part where you probably should have taken a picture of my face as he says “I need your consent by tomorrow, and then I’ll find you a slot for this upcoming week with the surgeon. I’ll come visit you. I know this isn’t easy but you need to do this to save your life. We need you to do this because we want you to live”.

Seriously, you should have seen my face. WHAT DO YOU MEAN I HAVE 24 HOURS TO AGREE TO BE CUT OPEN? WHAT DO YOU MEAN I NEED TO SAVE MY LIFE THIS WEEK??? I thought I had Covid or something, at worst??? In real life, I don’t think any words came out. It still doesn’t feel real. I think I just dissociated and had a panic attack at the same time. In my defence, that is a lot of heavy information to digest 😅 I really don’t know how to put it into words and I’m still processing, but think of all your deepest fears coming to the surface and you have nowhere to run. You are forced to make a decision you don’t necessarily want to make. Nobody should be put in that decision regardless of age. The idea of being cut opened, having things installed in your body, and then having to undergo intense treatment for the foreseeable future is absolutely terrifying to me. It would have been so much better if I was allowed to be put under general anaesthetic, but I was told that is incredibly dangerous to me so that wasn’t an option and I would have to do this awake. At best, sedated. My team are so amazing mind you, but nothing they could have said or done in that moment was going to make anything better. I knew it, they knew it, we all knew it. Just one of those hard things to do, and somehow get over. I’m used to that script. They left my room so I could process and deal with this, and I immediately went out for air. I don’t think I will ever forget the moment sitting on the bench outside the hospital after that conversation. I just sat out there with my head going 500mph. I’m so glad the hospital was quiet and it was sunny outside because hours had went by until it was suddenly dark, and had to go back in.

It doesn’t feel real because I don’t feel like I’m dying. I had gotten so used to feeling exhausted and pain, but a lot of it was down to work and burn out. I think we all normally associate dying people with it being quite visible, and sometimes rather obvious. I was walking, talking, and doing my thing as I normally have been. Matter of fact, I was taking quite good care of myself medically in terms of my eye stuff, my diabetes management, and my exercise and diet relating to my kidneys. I still always feel tired and restless, but you just get used to it. Never did I think I needed an urgent lifesaving procedure asap. They explained to me that the body is an incredibly smart thing and sometimes it overcompensates, so that I will feel better / manageable. In reality, the inside mechanics and bloodwork say the complete opposite.

I don’t know when I’ll ever be able to put into words the feeling you get when you are told you have to make a decision to save your own life in 24 hours.

Shock? Grief? Fear? Disbelief? Everything.

I often wonder is the feeling similar for everyone? Or do people with proper support systems feel differently? Do children raised on love feel less scared in these moments because they have mom and dad or siblings to turn to? Or is this a normal human reaction for everyone being told the same thing especially at my age? Do I feel deeply because of who I am, and how I am wired, or is this level of intensity normal given the circumstances? Who knows…

Regardless, it feels absolutely devastating. It crushed me to the point that I dissociated completely out of my body. Guess my brain wanted to protect myself despite wanting to get in my car and hug a tree immediately.

I mean logically, I’d like to think everyone’s first question to themselves when they are told they have to make this decision to save their life in 24 hours and blah blah blah, that one of the first rational questions or thoughts, would be “what do I have to live for?“, “who am I here for?”, “I have to save my life because of X and X”. And normally, I would imagine the response is “for my family”, “for my kids / parents”, “because I love my life and I want to keep living”. Right? Or am I wrong? 😅 or do people not even have an inner dialogue and they just say “yes, I consent to save my life”?

Nonetheless, these were my thoughts and I had to make a decision by next lunch time, whether I liked it or not. I’ve never been a “ride or die” type of person. I’m the weirdo that has to ask “where are we riding to, and why do we have to die?”. This is no different to me. I’m still processing, but this is by far the most traumatising thing I’ve ever had to go through. Everything that has broken your heart or has brought you joy, comes to the surface. I wonder if elderly people on their deathbed have the same experience sort of like watching your life back in your final moments. It felt like that. It’s like the most extreme grieving and processing in such a short span of time, while you still have to make a decision during all of it. I still don’t know how to put it into words because I’m still going through it, but maybe when I read back on this one day, it will feel different and things will have changed.

I made the decision the next day to undergo the procedure to save my life that everyone so desperately wanted me to do… I think I always knew deep down I was always going to do it. It is the most logical, and right thing to do. I would be stupid not to. You just have to let your gal panic first haha. I don’t think I have ever seen my doctor and my team so happy. They expressed it for a short while before attending to my traumatised self and being the professional parents that they are. I told my doctor I wanted the last slot of the week. I did not want to go in first. I need a few days to mentally prepare. He was cool with it, but also told me that it does come down to the surgeons schedule and availability. I knew they would try their best because everyone knows how scared I am of the hospital and all this medical stuff. They continued to explain the procedure to me because they know I would prefer to know. They know how my brain works and I love that. I almost passed out in the room when they described it to me and the whole process of treatment and my future thereafter.

I remember the next day the doctors doing their usual rounds in the morning, and I thought to myself it’s a fresh week and they’re coming to take more blood. I also thought they would have my procedure date so I could prepare and boy, that they had. This is probably a fantastic time to tell you that you should have seen my face a second time, because that’s when my doctor dropped upon me that I will be undergoing the surgery the next morning. Another panic attack, are we surprised? How is this my real life?

I’m still processing that day and this time period. It’s only been about a week post op.

I remember they drugged me up as much as possible in the morning before my procedure because I wasn’t allowed general anaesthetic, and my panic attacks can be super intense. It’s also very overwhelming because I feel very vulnerable in front of everyone when normally I have my panic and anxiety attacks, in privacy and in peace. I normally feel super embarrassed afterward. I remember they wheeled me down in my bed, to the operating theatre and we were waiting outside while they prepped the room. Something just came over my body and I started hysterically shaking and crying. Just pure panic. How on earth am I about to be cut opened in the hour?? My body won’t be the same for a long time after this. How unfair that a child who was medically neglected, now has to be the young adult who has to do terrifying things to save her life and live with the consequences of other people’s poor behaviour? I also wholeheartedly believe when you get pushed to extreme breaking points, you just stop caring. There is nothing more anyone can do or say, that can change my reality or upbringing, so who cares? There’s only so much you can push someone before they’re off the edge and there’s no more you can push and that’s what people are failing to understand due to ego and wanting to “win” all the time. It’s exhausting, and quite frankly, boring.

Anyways, who gives a fuck because in the end I did what had to be done. They cut opened my neck and chest, put all sorts in there, all became temporary therapists and mental health medics, stitched me back up and wheeled me back upstairs. Soon thereafter they wheeled me back down into another part of the hospital where I received my first tester treatment that saves my life. Are we all shocked that I had another panic attack during that, too? And basically, I should just give you a spoiler alert and tell you that those are just frequent and normal in this period for now. I wish they got easier every time, but they don’t. They’re giving me something for them so hopefully this is the last time you have to hear about them so much.

It’s been about a week since my procedure and the peak of all of this. This is far by the most difficult thing I have ever had to do in my life. To be fair, it’s not every day you have to save your own life in the matter of a day or undergo procedures and treatments. I disassociate a lot because there is a lot to process. I feel guilty about work but then I am reminded that there is no work if I am dead. My work has exhausted me to this point. Time to actually listen and save my life. I have done enough. People will just have to accept it. Most people have been amazing though. I am in pain every day, but I suppose what else can I expect when I have stitches in my neck and my chest? 😅 the lack of showering is irritating me. I can’t wash my hair until another week or so, so dry shampoo is my best friend. I wonder how I am meant to do my hair professionally moving forward? I’m not allowed to take jacuzzis and swim anymore, so that’s sad and another thing to get over for now. I haven’t even gotten to the processing part of the freedoms I have now lost while I go through this chapter. I don’t think my brain would let me if I could, because it will probably send me over the edge loooool. I’m not familiar with what I’m supposed to do when in recovery. From a very very young age, I’ve always been into video games. It’s the nerdy, over achieving part of my Asian DNA that is installed in most of us. I’ve enjoyed playing some video games but it’s not the same when you have quit those hobbies. I’ve been sleeping a lot, and I can’t tell if it’s from all the drugs, the new intense treatment, or just exhaustion from everything in general. What do I know? I’ll take it. A part of not caring is embracing my newfound love for sleep and rest. It’s still a challenge every day, but I remind myself to have self compassion and the fact that there is no rulebook to recover, heal, grieve especially under tremendous and uncommon circumstances. I miss the ladies of the GPC Clubhouse. I’ve had so many thoughtful and loving messages. I am proud and happy of the fact that what I created is still helping people and they are taking advantage and benefiting even while I go through some of the hardest chapters of my life. It sure brightens these dark days up.

I’ve gone to a few treatment sessions and they have been terrible every time, but the team around me are just so incredible. Everyone thinks I’m really funny (thanks, it’s the trauma), even though I am having panic attacks or I’m sad. They are super gentle and compassionate and patient. I hope when I read back on this even in a couple of months, it will be a different experience and I will have found some form of peace in all of this. I think every day is a learning day, but especially in situations like these. Your mind goes everywhere, and thinks of everything and everyone, but I am trying to remind myself of the advice I would give to someone else, and that would be “there is no right way to grieve and heal during such crazy circumstances”,

So that’s where I’m at. Thank you to the people who show such enthusiasm and encouragement for my return to writing. it feels so much better when you are a nobody again, and it is not a career. I’m going to go through some archives when I’m ready and republish some old stuff or just bring back some old photos. I’ve been pretty good at storing all my memories after losing all of them, and I’m so glad I can look back now. I suppose that’s what this is for, and maybe one day I can look back at this absolutely insane time at the start of my early adulthood. Maybe I will read this in a couple of years with a completely normal and healthy body. Maybe I’ll die during my treatment and this is a memoir and my newfound “dialysis diaries”. Who knows? But again, thank you for the nice words and enquiries. It’s hilarious to me that people can read my thoughts/memories. I love a good story though, so maybe it’s similar? I can’t even pretend how utterly crap, painful, and traumatic these last couple of weeks have been, but that’s just the things that some of us have to deal in this life and we move forward the best, and most authentic as we can – even if we die in the process.

I’m looking forward to moving out of this heavy stage, and finding some normality in all of this before we head into the next scary chapter. One chapter at a time, guys. Right now we work on accepting this new reality and implementing this new treatment into my daily life and routines. Remember if you don’t stop, your body will force you to. The body always keeps the score.

On the bright side, the pain is less intense and I can actually move my neck and chew food properly now. Maybe by next post will be my top 10 mushy foods 🤣

I really value the people who have been there and have showed support and love during a very difficult time for me as it unfolds in real time. I’m still really overwhelmed by it all, but super appreciative nonetheless, and will take each day at a time for now.

Hopefully I won’t feel bad for long and I can go back to running my business and showing up for the people I care about. I have to scrap the idea of international vacation for now, but maybe something closer to home, soon 🤞🏽 (definitely won’t be joining this ski season guys haha) Maybe I can write about my treatment when it is a positive experience and I am not wigging out every time. Right now, I’m just constantly poked and prodded and wired and tired. Not much to say other than be glad it’s not you. I got this #builtdiff.

Chau for now,

Chloè