My fellow third wheel is so ever present and loved by the ICU staff (whom he will talk to gladly. He even offered to buy coffee for a tired looking paramedic yesterday) that he is completely exempt from the restrictions of visiting hours. He is now staying in the caravan park by himself (the lovebirds have gone back to Kent), which he sort of likes.
He left a little earlier last night, got one stop on the bus and realised he had forgotten his bag, walked all the way back to get it from the visitors’ toilet, and then walked all the way back to his final destination. A prank was played on him by the lovebirds that wasn’t funny, especially as he has a chronic health condition that is effected by stress and he was BEYOND stressed out by it and they dragged it out for almost an hour. We talked on the phone until late. I called the lovebirds. Slowly but surely it was mostly fixed and then my fellow third wheel and I just talked and he made me tell someone about my weird flashy laggy vision that I’ve had since the ridiculous headache I apparently had when they first moved me to the ICU.
He said he would show up much earlier now that he doesn’t have to bother about not waking the lovebirds (who pointlessly insist on driving all the way back here tonight to see me for half an hour, even though everyone is talking about moving me to London tomorrow, which I’m hoping ends up being entirely unecessary because I’d like to just get out of here). He is understandably exhausted but wants to be here. We’ve been messaging for a little while and he just asked if I kind if he tries to sleep a little more before he visits. He feels genuinely bad. I pointed out that he should just do whatever he needed/ wanted/ felt like doing and that as long as he was happy then whatever helped him achieve that would be fine by me (I also added that this attitude stands until pretty much the end of time).
As of the last few minutes I am finally catheter free! Weird thing to say but it’s a big deal trust me. I can just about stand extremely briefly if someone holds me up, and the services of that awful (yet helpful when my kidneys decided to start throwing out 600ml/hr) tube are no longer required. My urethra is now free to do its thing AND I JUST HEARD A SEAGULL OH WOW.
Hearing the outside world is as close as I will get to it. I can’t see outside because the widows behind the nurses station are behind blinds. I heard the rain yesterday, thanks to the huge air vent over my bed I also smelled the rain as it drew in that wonderful outdoors smell. The other day it also drew in the smell of smoke, so I had a few security guards stood in here sniffing at the air like mad as all the staff on the ward had also smelled it and reported it. I quite like the smell of woodsmoke (this is a lie, I LOVE it) so I didn’t really mind, but they ended up having to go on the roof to see there was no fire, and it turns out some people were having an illegal fire somewhere and the special ventilation system for the ICU was drawing in the smokey air.
The problem with being under a huge vent is that I am completely freezing all the time anyway, and as my circulation is rubbished my limbs are pretty much just fleshy, mottled icicles at the moment. I have three blankets double folded over themselves and I am still freezing to the touch.
Talking of cold, unfeeling things…
There is one nurse here who keeps telling everyone I am going to be moved to a ward. This gets me extremely hopeful, but she seems to make this conclusion without speaking to any doctors and she has been saying this for a couple of days and then it turns out that nobody has any intentions of moving me anywhere, least of all the ICU consultant. She is extremely judgemental of me and seems not to understand the atypical nature of the situation as to why the doctors felt it was no longer worth trying to stabilise me off of IV yesterday. She made her opinion on it known and it made me feel ashamed and responsible and guilty.
She keeps asking why I’m still here and why I’m on the treatment I’m on still with no idea why it is necessary (she could just ask a doctor or someone or anyone rather than making constant comments). It’s making me feel awful. I already feel so bad for being here and some staff just don’t realise the damage their attitudes and words can do. She seems genuinely put out by my presence and it is upsetting me. She pointed out that I had been managed incorrectly at one point but said that was clearly the only reason I had deteriorated and it was ridiculous not to try again, without reading or listening to what her staff and even the doctors had reported (that we tried three times, three times I ended up in a medical emergency, only one time was the situation managed incorrectly but I was given an extra shot of medication that should have fixed it and didn’t. The doctors know why it keeps happening but not how to stop it as it is “extremely complex”. She just needs to ask). She’s never seen anything like this before and understandably hasn’t even considered it could be an issue. The thing is, she doesn’t even understand a typical case. She has no idea about what medication to give when or how anything works and so I wish she would just stop commenting and leave me alone.
She also doesn’t see the point in me going to London, she turned her nose up at the idea of it and took it as an insult to this hospital saying to inferred that they didn’t know how to manage me or stabilise me (To be fair they clearly don’t, which again she would know if she would JUST READ). The ICU consultants got a specialist consultant involved (the one who was in call the night I came in) and she is the one that said my case is too complex to manage here, not me. She was fantastic, she really understood everything and said it was very complex and a team that knew me should deal with it. That isn’t my fault and I was made to feel ridiculous for a decision that was not my own. Do anything to me (within reason), but do not ever let me down, and do not ever ever judge me – the impact of either of these things stays with me for a long time and gets to me more than anything else. The damage from either is usually irreparable.
Until this the staff had all been completely amazing, and on the whole they still are, but her behaviour triggered an emotional cascade and I had a series of flashbacks that were very unpleasant.
These guys have stopped the medication for my heart (Not. A good. Idea) because my blood pressure decided to be half of what it should be very briefly. My heart sped up in response to this, but this morning it is almost a normal rate and I feel incredibly dizzy as a result because going from a usual resting (laying down/ sleeping) hr of 100-120 down to 70 is the equivalent of a normal person’s heart slowing from 70 to 20-40. It feels lousy. And I am incredibly drowsy and dizzy, which is how I knew it must have slowed.
Apologies guys, moan now over. I’m really hoping I get at least moved to a ward today (I feel like leaving entirely may be too much to ask). If not, awesome nurse is back in shift tonight and I would really like to give her the card I wrote for her. The faces of many members of hospital staff are lodged in my brain alongside hers, but not for good reasons. It is so rare to have a face imprinted in my memory that doesn’t terrify me, that chills me out and makes me smile. I saw a nurse who had her hair tied up like one from the children’s ward I lived in for a couple of years when I was younger. I had a huge adrenaline rush and started shaking, but then she turned around and my brain eventually separated reality from its fear. Every time that nurse walked past I had flashbacks to that childrens nurse’s unprofessionalism and bullying while I laid in a bed septic with a temperature above 42.5 (and therefore unreadable) unable to look at light and hallucinating with a hr of almost 200 and low blood pressure (she was furious that she was going to miss her break. She belittled me and bullied me and treated me like I was disgusting on the bottom of her shoe).
Ward round just came round. I have persuaded them to try again to stabilise me and to take the cannula out of my external jugular (vein in my neck) seeing as I have a central line hanging out of the right side of my neck and do not need to be symmetrical. After however many days I’ve been here I may also finally be unhooked from the continuous 5 lead ECG and oxygen saturation monitoring and just have it done once an hour or something. I cannot wait to be free from this blood pressure cuff either! As this is all happening, the doctor said I can walk about if I want… I can’t walk about, but as long as they don’t know that they will let me try and that makes me happy. Ward round scares me and makes me far too intimidated to speak up. It takes all my effort not to just shake and cry in the presence of so many medical people – doctors that know me skip me on ward round and just sit and chat with me at the end 1:1… As this ICU consultant just returned to do.
I told him about my laggy smudgy vision since the disaster of the night I was admitted and he examined my eyes, got very frustrated that it is a Sunday, and decided he wants an ophthalmologist to get involved because apparently things should not smudge when they are moved.
He’s in his 30s (?) and German (?) And clearly works out and he’s pretty hilarious. He’s scary because he’s a doctor, but if he didn’t have my life in his hands I think I would find him pretty awesome. I’ve had my blood sugar checked so many times that my fingers bleed without being pricked any more, but he saw my continuous glucose monitor and told everyone to use that instead,
“Any more helpful devices to tel us about?” He laughed before he left.
Also I just jumped from 4 IVs down to 1. We are trying to stabilise me. I hope with all of my everything that I’m out of this place soon. The ICU is so sad when you’re awake – the things you hear and the conversations people have are just heart breaking. The stories of the people in here, the sound of the woman next door choking on her tracheostomy and gargling each time they try to reduce her sedation… It’s so awful and haunting to hear.
But anyway all of these advancements are such huge steps! And all in the right direction! Unfortunately I have to stay parked in the ICU but I am human again! I can’t wait to go for a walk! CANNOT WAIT. I have no idea what this hospital looks like at all. I am also planning to graduate to pyjamas instead of a hospital gown.
This post seems to be sort of happening as I write it and I’m aware it is awful so I shall stop now.
Anyway, as always.
No way but through.
And I am almost through this. I (have decided) can feel it.