I actually wrote this blog last week but I’m only getting around to posting it now so you will note that I am commenting on the snow and new restrictions! It has taken me a long time to get to this part of the blog and recently the news footage of a Covid HDU/ICU in a London hospital was actually taken in the exactly same place that I was. It brought back a lot of memories, some that I had blocked out but I thought it would be the perfect time to write this section of the story.
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I hope everyone is keeping well after another week of new measures and restrictions. My highlight was watching the inauguration and the hilarious Bernie Sanders memes that followed. Biden being elected represents hope even if times are still turbulent and difficult. We will get through this ? In the meantime, I am just going to keep reading books and writing blogs as my form of escapism! We have also started watching Baywatch from the start and it is the dose of Vitamin D that I needed today! Oh and also. SNOW!! I came downstairs this morning to the brightest dazzling white light coming through the door and I looked out and it was snow. I feel like this simple Act of God has been just that, a little lightness in the dark days that everyone needed.
I will try and keep this a little entertaining and not too factual but post-op recovery just isn’t jazzy. It’s the shock of being in hospital and its frankly painful. So many people go through it every single day. Surgeons complete these surgeries every single day and it’s so regular for them but to me it was HUGE. It was such a shock to the system – literally. I will try and describe how I felt that day without traumatising or scaring anyone too much…
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When you are under general anaesthetic it’s like Bernards Watch. Time stops when you go under and restarts again when you wake up. I have had it a few times now and it is the most bizarre experience. Your lights are literally put out and you have no memory to account for what went on when you were in the dark. The only evidence than you were in surgery at all is of course your new wound, the beeping hospital equipment and your new surroundings.
People with Narcolepsy are taken to the High Dependency Unit after being under General Anaesthetic. This is because we are more difficult to rouse out of sleep and when you come out of surgery it’s important that you wake up so they know that you haven’t taken a reaction to it. Not surprisingly, something that puts regular people into a sedative state can be hard for us to shake off. I went down a bit of a rabbit hole researching the reason why but it’s quite complicated to explain. Basically, the neurons that we lack – hypocretin/orexin – are associated with the sleep wake cycle but they also regulate how we interact with anaesthetic. We never reach a deep state of sleep during a regular night so the dose required to put us into that state for surgery has to be adjusted. If you have too much Orexin in the first place they would to adjust the dose in this instance as well. After surgery our Orexin levels are different to what would be expected and it’s monitoring what is our normal and ensuring we are recovering as we should. This is what I have understood from reading medical studies and it could be entirely wrong, I don’t envy people studying to be anaesthetists!
It would be easy to dramatise what happened next for storytelling effect but honestly, I don’t really have to because this is just what happened. I remember starting to hear voices surrounding my bed and the beeping of a machine. I felt the familiar struggle to wake up and the horrible half eye open sensation I experience when I’m struggling to wake up. But mostly, the pain was cutting through me, or so it felt. My eyelids were fluttering open and closed. You know in medical dramas where they put the camera from the patient’s point of view and everything is in slow motion as their slow blink shows what’s going on. That was exactly how it was
Blink. A sea of green surrounding my bed. Blink. I think these shapes are people. Blink. They are all talking in hurried voices but I can’t make out what they are saying, it’s like they are speaking a different language. Blink, I’m starting to focus on one voice now, she is telling me it’s ok to wake up, I’m in some pain but they were getting it under control for me. Blink. I made out her face. She was telling me I was in HDU after surgery and it went well.
It’s weird how you sort of forget you are in surgery. It’s like oh that’s right I’m in hospital. I’m sleepy. Oh I’m awake. Hmm hospital smells. Wait what is this on my nose?? (oxygen). Claws it, someone catches my hand to put it back on. Pain. What is going on. Trying to move and then feeling my stitches for the first time and feeling shocked. I just read these sentences back and they don’t make sense, nor are they structured well but that is what your thoughts are like. Utter confusion.
I mentioned before that they had given me an Epidural. So I was also feeling confused, why was I in pain? When I was conscious, the nurse explained that there had been a leak in my epidural during surgery and this meant it hadn’t taken effect. This explained why I was in so much pain and she said that my body went into shock upon waking. TYPICAL. She also put a little remote into my hand and explained that this was my pain relief, when I felt pain I could press it and it would administer a new dose. For obvious reasons, it was restricted to so many ml per hour so you couldn’t press it constantly. It kinda looked like an Amazon fire stick but the only delight was sweet, sweet relief from pain. Well….all was sweet for now. The nurse also explained to me that she wanted me to do these breathing exercises and move my arms slightly and gave me a towel taped up to support my stomach. At the time I thought this was entirely unreasonable but now I realise that she just wanted me to recover as well as I could. In a way, the more I read about holistic health and the importance of breathing in reducing inflammation it makes TOTAL SENSE. She was also giving me shots of potassium and other nutrients as well as anti-sickness meds. I couldn’t have been in better hands and I was so grateful for her attentiveness and quick thinking. She had a lovely motherly nature and I remember her just chatting away to me asking me questions and being shocked that I was as old as I was (not a day over 12 apparently).
Unbeknownst to me, my parents had arrived as I was having my little body-in-shock episode. My nurse explained that the doctors were working with me and put them in a family room. My memory is very blurry of when they came in but I remember them sitting at the end of my bed reading their papers. I had fell asleep and when I woke up I had the craziest thirst. I looked around and the tray over the bed had been pushed to the side. I tried to move to sit up when I felt pain shoot through my stomach. I tried to move my arms but I couldn’t reach. ‘Hey can I have some water please?’ I asked my parents. I looked at them and they were absolutely engrossed in their papers, they hadn’t noticed that I was awake. I repeated myself. Nothing. Tumbleweed. They turned a new page in the newspaper and I then ended up roaring ‘CAN YOU GET ME SOME WATER PLEASE!!’ To which they sped into action and moved to get the water. I must have seemed like a demanding little princess. When they gave me the water though I couldn’t actually move my arms up to drink it without being in pain. So I then had to get them to lift the cup and hand me the straw. I felt very demanding but the thirst was like nothing else I had ever felt. I think it’s the oxygen on your nose that makes you soooo thirsty.
In HDU, similar to ICU, there are fewer patients per nurse and the nurses I had were so skilled at making a very stressful situation calm.The nurses changed shift at around 8pm and my new nurse was equally as warm and friendly. The next morning she asked me how I felt and the only thing I could muster was that I was starving. She appeared a few minutes later with a yoghurt and a cheese sandwich. It only dawned on me post hospital that maybe this was her lunch because it certainly wasn’t hospital food. I ate it happily and told her I felt GREAT. I really did. Until I didn’t…
My memory leading up to the reaction is a bit blurry. The day after surgery I was taking selfies and sending it to my friends saying I felt totally fine – looking back I was clearly just jacked up on pain meds. It was some time in the middle of the night that I felt this itch. I had no idea where it was coming from. It started with feeling like my arms felt a bit itchy. Then my legs. Then my face. Then my whole body felt like it was inflamed. It was an internal itch and when it got really unbearable, somewhere around 5am, I hit the bell.
It was the pain meds. I was having a bad reaction to them. But there was a patient at that time that got seriously ill and the nurse was called away, she promised she would be back but I never saw her after that. Morning came and a new nurse came on shift. Being an empath means that you pick up on people’s mood very easily. Just as I had picked up on how warm and lovely the other nurses had been, I immediately had a visceral reaction to the new nurse on shift. She was cold, grumpy and had a permanent look of being unimpressed on her face. I got this feeling in my stomach, I’m not sure if it was worry or what but I just knew that this day wasn’t going to be the same. I told her that I was having a reaction to the pain meds and she didn’t even answer me. With a bored expression on her face she finished my obs and moved on.
My parents arrived to a very different girl than what they had left. I was agitated, clawing at my arms and tearful. The consultant visited me and due to pure frustration I ended up telling him that I thought I was having a reaction and he, concerned, told the nurse to cease my current pain meds and put me on a different one. Finally, I thought, this will end. In reality…the nurse didn’t take me off it for hours. I was reluctant to press the button to release more of the pain relief because I was having such a bad reaction so the pain started getting really bad. I rang the bell and the nurse came and I said that I really needed to get on the new pain meds. She said that she was going on lunch. WHAT?. I was starting to panic now. I could tell by this woman that she thought I was being over-dramatic. Two hours passed, eventually someone came to change my pain relief, or so I thought. She changed the canula in my hand and as she chatted she said that she had just been on her lunch. I was incredulous. Where was the first nurse and why hadn’t she came back to change the pain meds after her lunch???? Ouch. I explained to the nurse that my hand where the canula was inserted was throbbing. She ignored me and kept administering the canula. Yes I know, what a brat I was but honestly the itchiness of the bad reaction had driven me quite mad. I also realllllllly wanted out of HDU. The nurse turned and looked at my oxygen stats and told me that I wasn’t getting out until I moved to the high 90s.
A few hours later the vomiting started.
A doctor was on the ward at this time and as I start being sick she rushed over with a basin. I was freaking out.
Let is all out, she said gently.
My stitches, I shrieked.
I hate being sick generally but to be sick whilst having a 13cm vertical wound on your stomach hits different…in a very bad way. The pain was crazy.
‘Don’t worry your stitches have really strong glue they wont come apart’ reassured the doctor.
They gave me anti-sickness tablets but they came straight back up so I think they put me on an IV of it. The Fentynl was making me physically sick so I was going to have to now take anti-sickness medication with it. All the while, my hand was really sore. I tried to explain this but they probably didn’t hear me from my shrieks and crying haha.
Some time that afternoon I fell asleep. Everything else is a blur. I was told by the nurse who came on shift that night that my stats were up and I would be moved to a ward as soon as a bed came available. The nurse on the first night was back on shift. She came over and told me that she was so happy to see that I was recovering well and that she was worried about my stats at the end of her last shift.
It was some time in the middle of the night that I got moved to the Gynae Ward. I was relieved but a tired relieved where I felt like I could breathe again. I don’t know why I was so obsessed with getting moved to a ward, I think I felt like I was taking a bed in HDU that someone else needed more than me. But now when I look back I realise that my oxygen levels were quite bad. I was exactly where I needed to be.
