Wednesday 18th January 2023
Improving
After the big adventure of moving to the proper ward it would have been nice if things settled down a bit but really it was just the start of the rest of it. I was still in a pretty serious condition, on high levels of O2, steroids, lack of sleep and still bunged up with fluids, although not quite as bad as what I had been.
Due to the lack of sleep, high dose of steroids and low oxygen levels they kept having to take bloods from inside my arm to check for the CO2 levels to make sure they weren’t dangerous but each time where “reassuring” and nothing too serious, but because of all this I was starting to hallucinate and hear things, it happened before where I would see shadows in the corner of you eye but this was a completely new level.
On the wall facing me I could see a projection and it was someone playing VR, it wasn’t all action and they would stop every so often and run around for a while and then go into puzzles and you could see them working out what they were doing to get the solutions, even loading screens and accompanying sounds with what they were doing and them talking as well. On the loading screen the name of the game popped up, I can’t remember what it was but I looked it up at the time and it was an Oculus 2 game and from a quick look at what was shown it was exactly what I was seeing and hearing. I’ve never seen or played an Oculus 2 so how I knew what the gameplay would be like of a game on hardware I’ve never seen I have absolutely no idea.
And to be told that it wasn’t real was pretty hard to believe, and I’m still not convinced it was just in my head, like it was right there, it was happening. It was like seeing a flying pig and it coming over and saying I’m a flying pig and everyone around being all “there’s nothing there”.
But later that night I knew I definitely was seeing things, every time the minute hand went round past a number on the clock it stopped, climbed over to the number and then ate it, don’t ask, not a clue but it was fun to watch along with the heavy metal music that was playing through the O2 pump, again, not a clue but if that music wasn’t really there I have some imagination.
The following day the tablets were starting to be reduced and after that I began to sleep a bit better, the O2 levels were starting to be reduced as well, so from the Sunday things gradually started to improve.
On the Tuesday I was informed that they finally got a positive result for something and that was a form of coronavirus, not covid-19 but one of the umbrella ones that would normally not affect people but due to the weak immune system it hit me bad. Thankfully with finding this out they were able to restrict the antibiotics down more so I wouldn’t have to take as many.
On Wednesday evening I felt a real change, I wanted to eat, drink and watch tv rather than just roll up in a ball and things started to improve dramatically after that, reducing the O2 levels and being able to do a bit more exercise. I still needed some O2 after doing anything and was on a much lower dose. Sunday was the last day of my antibiotics and the only thing to really do after that would be to get off the O2 and get the energy levels up. This isn’t exactly the easiest thing to do in hospital though, it’s not like you need to actually get up to do anything so everything is such a chore. Just getting up to do a few exercises or going for a walk, rather than at home you’d be going and making a coffee and moving further than 2m to go to the toilet, making dinner and just generally doing things around the house rather than sitting in bed all day.
The doctor was concerned that if I was to go home too early I wouldn’t be able to do anything and end up back in hospital, but I don’t think this would be the case I feel getting home would encourage me to do more and I’d be able to build up a bit faster than lying around. I left the decision to them though as I don’t want to ruffle feathers and screw things up. There was talk all week about going home but eventually on the Friday it was organised to go home, though many times before this has been said and I’m still there a few days later, I don’t build my hopes up too much until I’m walking out the door.
And finally at about 4 I was in the car going to my parents…Sunday 15th January 2023
More Lives Than a Resurrecting Cat
Hey everyone, hope you’re all doing well. It’s been a long, tough few months escalating into a pretty manic 2023 pretty much from the get go. To summarize the last few months I started new tablets which made my blood pressure plummet and have absolutely zero energy, things where just not right. At the same time though I was content and despite not being able to really do anything apart from sit about, read, watch tv or basically vegetate. The aches in my legs were getting worse. Everything was going to shit but the head kept mostly well in shape and wasn’t overly worried about too much, I was going to counselling being able to talk about things and how I was adapting at the time made things feel a lot easier in the transition period.
Mid November, there was a almighty crack in my chest which I ended up having to go to A&E about which, not for certain but pretty much so, I damaged my sternum, in fairness it wasn’t too bad and wasn’t bad enough to distract my brain from my leg pains as they were still the main focus, I was more limited on things I could and couldn’t do and I felt very vulnerable in regards to breaks and falls with being light headed and with in onset of winter and higher risk of infection. I was quite happy to hide in the house until Spring.
Things continued on and soon after Christmas started to feel an infection coming along, and a few hours into the New Year I went to bed and ended up in a coughing fit for a couple of hours, followed by an intense fever and shivers as bad as I can remember. A few hours later things settled but the episode had drained me and similar happened the following evening. At this stage I knew I had to go to hospital. I had a few things to do and got them sorted on the Monday and Tuesday morning phoned the hospital, they were so busy though that I had to wait till that evening before being brought in.
They started me on general antibiotics and fluids, increasing drugs and started testing for everything they could. That evening things weren’t too bad, no massive fever spikes as I had been getting, still coughing and feeling more bunged up which escalated the following day.
This is when things all start to get a little blurry, I know different things that happened but the timescales I’m not 100% sure on, if I remember right it was the Thursday things were pretty critical, I was drowning with all the fluid in my lungs and antibiotics and couldn’t breathe more than a short gasp, saturation levels were dropping and started on O2, then levels still kept dropping and more O2, and dropping again and more O2, They had to make a device that would hook up the O2 pumps to get the maximum level of O2 pumped into me. The only other place where they can get more O2 pumped in was some machine in ICU. I was on a load of diuretics to try and flush the fluids out of me, while also getting fluids to not get dehydrated.
I was on the phone to my mum and dad earlier that day and just couldn’t talk so I told them to phone the ward to get info as they’d actually be able to talk to them as I could only string a couple of words together, then for some reason there was a mad panic about them phoning, even though I told them to. Then later that day the nurse made me phone my parents to pretty much say our goodbyes.
That night was pretty iffy, the ward I was in is only a day ward and not supposed to be open 24hrs, there were others there but on the Thursday I’m pretty sure I was the only person and they kept calling ICU to try and get me transferred over to them. By this stage I was pretty out of it, with the high dose of steroids, no sleep for about 5 days, barely breathing but ICU didn’t want to move me as it would be… a worse outcome than if I was to stay where I was where I was at least a bit “stable”.
Along with the infection and fluid build up in my lungs and chest I was also having a lot heart problems, they think that with the infection it triggered some heart failure, causing severe pains in my chest but as there was nothing prescribed for pain at the time, paracetamol had to do until the next morning when I was finally prescribed some strong stuff which really helped and made things a lot easier or at least made it feel a lot easier. Lying there for 8 hours with your heart grinding, chest as tight as anything and barely being able to get a mouthful of air isn’t one of my more pleasant experiences.
This mostly continued into and during Friday, although I *think* I improved marginally… Very marginally.
Saturday was a bit fun for everyone… Since the building was quiet, they decided to try and move me to a proper ward. This was very much a team effort by everyone, apart from me, I know I had picked up a bit by this stage as I was pretty aware of what was happening… they got as many O2 canisters as they could and piled them on my bed, had a few runners to go ahead and open doors, call lifts and clear corridors and then 3,2,1…. GO!!!
The was a lot of relief for everyone when we arrived in the room, I on the other hand felt a lot of pressure for all the effort that everyone was putting in for me.