3am Freakout (but it’s… good!)

3am. Wake up hurting. Wake up shaking and sweating and electric with fear. Another nightmare, no doubt about a hospital. Without really thinking, I play Pompeii and breathe a little easier as the sound of Bastille overrides the roar of my panic. What are all these notifications on my phone? The girls from the Bastille gig are freaking out about something. I’m being told to watch something in a separate conversation with one of them (the wonderful human who has travelled all the way from Manchester to see me). My IV pump alarms. I look to find 4 infusion sets snaking downwards and only three pumps. I stumble to the bathroom because the room itself feels way too big to be freaking out in and I don’t want to be anywhere near a hospital bed.

I go back to bed and glance sleepily at my phone. I see a message telling me to “WATCH THIS.” I’m like I’m terrified about tomorrow, I’m so so low, but she’s happy and that’ll make me happy. I expect it to be a YouTube video. And then I open the chat. And now my nurse is all

“How am I going to get you to sleep now?”

“I have never seen you this happy!”

“You’re wired!”

Because my friend, who came all the way from Manchester to visit me and spent the last two days sat in this hospital, went to a gig last night and met DAN SMITH (lead singer of Bastille, the band who make the music that saved all the parts of me that medicine kind of forgot / broke). And she got him to make another video for me (turns out she’s also been tweeting at him to come and visit me, which is just beyond adorable of her). I feel bad because he was just out trying to be a normal human and enjoy some free music, but also… This was SO well timed and as a result of that video, right now I just don’t care about my health situation. The reality that was eating me alive is buried beneath some words from a human who created the music that saved me. Yes, I may be sliced open within the next 12 hours but WHO CARES?! Yes, this situation is terrifying and overwhelming and I cannot deal with it but I DON’T HAVE TO FACE THOSE THOUGHTS RIGHT NOW. They are buried. They are down below rock bottom and I am up in the clouds. Because of a complete stranger with an incredible musical brain.

This is now the talk of the ward. I have been so sad that my consultant came in on his day off. I have been breaking to the point that everyone else was breaking with me. And when I saw that video (which started with my friend and then suddenly Dan Smith was on my phone screen and my sleepy brain took a while to acknowledge that he’d just said my name) I was so happy that people came running because they thought something was wrong because I spoke so loudly. 

I am beyond grateful. (My nurse is like “you were finally getting a good night’s sleep and now it’s ruined” but she also appreciates how amazing this is to someone who appreciates the music imagined by that man’s brain). 

Also, I’m smiling. Didn’t think I’d ever do that again. I’m smiling and it’s now past 4am and I just… I feel like I can face today now. I feel like I can face anything as long as this feeling stays, and if it doesn’t I’m just so glad it arrived for a little bit. It’s the break I needed. Bastille – back at it again with the saving me from my own mind.

That is all (please someone freak out with me because THE FEELS).

I am SHOOKETH. I really don’t deserve such incredible friends and such nice things. Life’s been rubbing salt in the wound lately and now I have like… some chips (or fries if you’re American) to sprinkle the salt on – wow I’m sorry for that metaphor I’m too tired to effectively think any more.



Comfort of… Bastille?

“As the world falls down around us

Give me something to remember

I am holding on

In the back of my mind

For dear life, dear life

Holding on

In the back of my mind

For dear life, dear life

Oh I, Oh I

I am holding on for dear life

Oh I, Oh I

I am holding on for dear life”

Bastille, Comfort of Strangers

Words fail me a little bit at this current moment. When I heard those song lyrics, I stopped dead. Everything melted away, and my brain curled up in those words like a comfort blanket. I had been fracturing, bursting at the seams, suppressing emotion that I couldn’t allow myself to feel but was most definitely there. I was torn. I was on the edge of letting it all go, of falling apart. And then I got a message from a friend asking if I’d heard Bastille’s new song. Immediately, I almost laughed out loud. Whenever I hit a tough time or get bad news or something, Bastille (the band whose music ended my emotional isolation in the back of an ambulance when I was… 16? if intrigued, see this post) seem to drop a new song or a new album.

I searched it online. Hit play. Listened until the chorus played, and this song just… took me. A total calm rose up and engulfed me and had I been alone, I may actually have shouted YES at the top of my voice. It was the same feeling I got when I heard Pompeii for the first time in the back of an ambulance, when I heard Good Grief for the first time as I walked out of a hospital ward after almost dying and being told that waking up everyday was pretty much like playing Russian Roulette… the same as I felt when they dropped a new album a day or two after I’d had surgery and was laying in bed writhing in pain until that haunting voice played  through my headphones and removed me from the world for the entire length of time it took to listen to all those songs.

I’m pretty sure this latest song is written about being in a relationship with another human (I may be way off there), which I most definitely was not, but the beauty about all forms of art is that people are free to interpret that art in any way they want. I have no doubt that this song said something to me that it was never intended to say when it was written. But it sort of woke me up to myself, it gave my brain an ally, it gave me words I could twist and put to something I couldn’t verbalise or even accept before. It was like a “Eureka” moment… It brought all the guards in my brain down and finally let me admit that I am not ok with how things went, I am not “not feeling” all the things I think I should, I had simply, as my counsellor noticed I do often, dissociated myself from the things that hurt too much to go near.

On the surface yes, I can ignore how I feel, I can tell myself I’m not disappointed yet, I can try to ignore the fact that three (wait, how many days ago was Wednesday?) days ago I had heart surgery (and not only did it not work, but I somehow feel worse, and the second part that needs remodelling if we have to attempt again was too close to my phrenic nerve so… asdfghjkl… and I have no idea what to do or where to go and it changes all of my imagined plans because is this all I am now? A tachycardic, fluid retaining, coughing, breathless, swollen, oedematous mess?) but in the back of my mind I am in the middle of a storm, clinging to this tiny shred of something that remains. Hope? Maybe. And I am being battered by emotions (not only from the past few days, not only from my health. There’s a lot hanging around and churning around back there), torn apart, ripped apart, withering, worn out, exhausted, beaten, probably ready to throw in the towel and walk to the Grim Reaper with open arms. In the back of my mind, in the part I ignore, there is a battle, and I am holding on for dear life. Paralysed by it all, completely lost, completely terrified, and just clinging to anything. That anything, right now, is this teeny, tiny hope that there is something that can still be done. And I didn’t realise that, couldn’t accept that, couldn’t work out why I wasn’t entirely happy and felt tense and bothered (or even admit that I was any of those things)… until I heard those lyrics and my great big deluded, ignorant conscious mind turned around and went, “oh yeah.”

And then… click. I am disappointed. I am falling apart. I’m devastated. I’m terrified. I’m wondering if I will ever be able to have a job, what will happen about the final year of my degree. Will I ever be able to go for a walk again? In the back of my mind I am still feeling all of the things I refuse to let myself acknowledge, and they have been burning slowly, like a fire. Those flames have silently eaten away at all the foundations that held me up. And the thing is, before I can rebuild, I need to crumble. Just demolish the wreck that is left and build something new to take its place, before the rot spreads. That’s kind of how I work. But I’m really great at pretending to everyone, including myself, that I am fine.

And then along comes a song, written by people who I never have or will meet, about a situation I probably can’t relate to at all… And it says all that needs to be said. Enough for me to stop hiding from myself, to let down the barriers, to accept what I am trying to shield myself from and have in doing so let silently destroy me. Weird. Awesome… Bastille.

Medicine saved my body. Music saves my soul. In ways that nobody and nothing else can. (Hey, it moved me enough to post twice in a few hours rather than twice in one month). It kind of brought me… Home.

I was so lost, and I didn’t even know where to turn or what to do or how I felt or what to reach out for, I was just crumbling and trying to pretend I wasn’t. And a song I’d never heard before just shut me down. Totally. Shut all of that. Down. No idea how long for.

This is why I never go anywhere without headphones.


Almost Through With ICU!!

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.


The consultant in charge of the ward walks in to see me with one of his henchmen (another doctor). He says the ward sister will be joining us and pulls the curtain as if this will stop the noise. Dread fills me from my toes (I was so tempted to write distal phalanges but… Oh wait I just have) to my cranium. I brace myself for the impact of miscalculated words as he says my specialist nurse has raised concerns about my emotional wellbeing. I try
and fail to explain myself. I tell him about the repeated cycle and that people keep saying it is going to kill me and that in this moment I can’t stand the thought of going through it again, which is stupid and horrendously ungrateful, but a thing I don’t seem to be able to control. I tell him that the team here told me it was negative to think of a recurrence of this situation as an inevitability, that it is realistic. He understands that. He says this is an unusual circumstance that they probably don’t know how to tackle, and that isn’t my fault, even though I feel like it is, like I am doing something wrong. 

“There is nothing I can do to fix this, but please, if there is anything at all we can do for you please tell me. If you need any help just ask. I’ll do anything I can.” I am immediately caught off guard, disarmed, relieved… All in one moment. 

We start to talk, slowly, about how often I am in hospital. He totally understands why. Understands the inevitability. I very briefly mention the PTSD. I say again that doctors don’t understand and try to save my butt using conventional treatment methods that mean I just keep bouncing back into hospital.

“I… We understand. Obviously I cannot say we understand fully, I’ve only met you on this admission and this is not an ordinary situation, but we understand that this doesn’t happen because you let it happen, it happens because nobody can stop it. You’ve been through and awful lot. If we can make this easier for you in any way please just tell us how.” WHERE HAVE YOU BEEN ALL OF MY LIFE? I sit in a stunned silence. We talk about my reluctance to get help, my shame, but mostly the reactions of A&E staff and paramedics, who occasionally think I’m unconscious because I’ve taken drugs, or seem to think I had some control about how unwell I got and just don’t care about looking after myself.

“You’re right there is a stereotype around young people and unfortunately you’re still young enough to be caught up in it.” The sister says. The doctor sighs,

“Unfortunately there are usual circumstances which doctors become very used to seeing. They will initially jump to conclusions. This is very complex and rare. They do not understand this situation like we do.” We talk about getting my consultant to make a plan (which was ignored when he tried this before) and write a letter to explain the complexities of the issue which I can carry with me,

“Yes, that will be good, and then she may have the confidence to go to hospital sooner if she can just hand them a letter so they too understand what they are dealing with. Any doctor will know what is going on from what they see before them, they need to know why. They need to know how not to try and deal with it.” He talks about me in third person, thinking out loud. His henchman surprises me by speaking up in support of the idea. They agree it was a good one of me to suggest.

We talk everything through calmly, I am too defeated to freak out. I feel nothing. I am hollow. I am incapable of any emotion and yet I feel the tears brewing again. He leads the conversation, bringing up different areas which may be problematic and things he thinks need to happen. I quietly, robotically, monotonously respond. He calmly, gently, compassionately continues to talk after each pause. He doesn’t think I am stupid or pathetic, in fact they all seem to think my shameful defeated state is justified. They seem to think I’ve been through a lot of difficult stuff.

He asks me if I am happy with the care this hospital and these doctors are giving me, and how he can improve it, acknowledging the fact that he won’t take it personally and that there are shortfallings sometimes. He also asks where my main care for this health hiccup is based. I tell him London.

We talk about how this hospital and London don’t talk so both tell me different things and these guys seem annoyed if I do what the other says. He says that needs to stop, and he will get the two teams to talk to each other and start communicating, even though the consultant I saw this morning knows my London consultant and expects to bump into him at a conference tomorrow where he will discuss my case (if not, he will call him on Monday. Monday. Is so. Far. Away).

He says while I am in Kent I can’t just be let out of the hospital and left for London to deal with – he wants a district nurse from this health trust to see me once a week (usually associated with elderly patients he admits, but he feels it may be necessary); he says I need better community care from this hospital, more support. He says a district nurse will notice signs of deterioration when I might not, and I may be able to seek help quicker and it may give me more of a chance at evading the grim reaper. He says I need more regular appointments here while I’m not in London – weekly or two weekly. He says I should have a lot of support in managing this health hiccup, especially as it is so complex and deteriorates so rapidly and uncontrollably, taking other health hiccups on the downward spiral it plunges me into. He says he wants to try and reduce my number of hospital admissions.

He totally gets the PTSD. They all do. They are kind about it. They are sympathetic in a non-patronising way. There is a sadness in the eyes I look at, the same helplessness that lies within my own. He says while I am here (as in, an inpatient) I need help to deal with the consequences of that (PTSD).

I apologise again for being so pathetic. They all seem outraged at the idea that I feel that way. The consultant guy protests, the henchman shakes his head furiously, the ward sister says,

“This isn’t pathetic at all, you’ve been through so much.”

“You’re going through so much more than most would cope with.” Another voice says. At some point somebody says,

“You’ve been through enough.” That last word. Enough. I like that word choice. It means finality. It means it is time for it all to stop. It means someone else wants to put an end to this. It means change. Enough.

And then the sister mentions the IV access issue. The line issue. I tell them I don’t want to argue or fight for one, that I give up. The main doctor guy says he can’t do anything about it, but that he thinks I should discuss it all with my consultant here who can act upon it. I tell him I sort of did, although I’m confused as to who my consultant is. We talk through my access issues. The central lines they abandon putting in and try to put in another side or another area, the hours of stabbing while the drugs they need to infuse sit beside me mocking us all. He says he can see why somebody might not want to put a line in me, but that the positives and the negatives have to be assessed and discussed thoroughly. I say I didn’t feel that was possible, and that I now see no point, because I don’t. He says access is a huge issue. 

I don’t want needles drilled into my bone. I tell him what the other consultant specialising in this health hiccup told me this morning, and that it isn’t as simple as he made out. I say I feel like nobody listens. They all understand. He says it must be incredibly frustrating. I say they won’t get many more lines into my femoral vein and definitely not my neck (they now always fail), he nods. I say I’m scared about what happens then, that I don’t want to die while looking at the medication that could save my life if they could get it into my vein. A fresh wave of hopelessness washes over me. My voice returns to a quiet monotone.

He is patient. He is kind. He kneels on the floor the whole time he is talking and I see him shift his weight and wince with the discomfort. He isn’t patronising or condescending. He doesn’t care because he’s paid to care, he cares because the situation I am in bothers him and he wants to fix it because he has managed to retain his humanity. Over and over again he tells me not to apologise. He understands. He actually understands how traumatic it is for me to be here and that when I leave and the flashbacks reduce in frequency, the freak out will stop and I will think more clearly. 

He is calm. He gently asks questions about issues he thinks need to be addressed (but can personally do nothing about other than to give his colleagues a shove towards resolving them) and he listens to the answers. And then I am fighting back tears of gratitude. It is the most helpful conversation I’ve had since my old consultant for this particular health hiccup at another London hospital. I feel listened to. They care. They don’t make me feel stupid and they are deeply sorry that I’ve been made to feel so, and that I feel like I am a nuisance. I waited so long for this. He listened. They listened. 

But it is too little too late.

I am gone. There is, at that moment, nothing left of me to save (and I hate myself for being so pathetic).

“Oh my dance is getting slower now,

Cause my years they’re getting older now,

And my eyes, they won’t cry.

My tears have all run dry…

Will you please believe

I’m not the person you see,

I left that body long ago.

I left it way back there.

Will you please believe,

Given all that you see,

I left that body long ago

But somehow nobody knows.” – Amy McDonald, Left That Body Long Ago

The Fight Is Over

“Everything will be all right in the end. If it’s not all right, then it’s not the end.” – The Best Exotic Marigold Hotel (film)… A line that was quoted to me by uni dad during particularly crap times, but that I didn’t believe until today.

Yes, yes, yes. So many levels of YES! No more fighting. I’m overwhelmed by a hopeful relief to the point that words are currently failing me. I don’t know where to start. I’m too impatient to go back to the beginning and too stubborn to start at the end (so you’re going to have to read through the rubbish to get to the good part, sorry).

This morning I tried to print emails and type up notes to take to my disability advisor at university to discuss the whole ‘support? Yeah we aren’t going to do any of the things the disability services said’ situation that has been occurring for the last year, and has at times left me suicidal (ok, wow, I’m so over the moon that word doesn’t even bother me right now). Anyway. I became so terrified about the whole thing I ended up a bit of an emotional mess, and spent an hour listening to music before I could re-attemtpt my brief summary. I was terrified about having to fight the university again just to get some support. But I eventually managed to make bullet points anyway.

I went onto campus. Instantly every single part of me was at home. I ditched Winston the wheelchair and outraged my body by walking from the back of the building to the front of it. It occurred to me as I got in the lift that I’d nearly died in that building, which gave me the creeps, especially as it has a morgue in it and is the site of our anatomy practicals. I went to the deputy head of disability services, who I’d met with before, and we discussed everything. He was so supportive. He was also appalled, disappointed, and seemed quite horrified. He called the situation ridiculous so many times that the word started to sound funny. He said it sounded pretty horrendous to have had to go through, which made me feel less embarrassed about the impact it has had on me emotionally at times. He apologised. He shook his head pretty much throughout our entire discussion so much I wondered if it might work itself loose and fall off (yes I know this is anatomically impossible).

He said the staff hadn’t supported me in the way they were meant to at all. We talked about the wheelchair situation. He said they can’t kick me out for not doing assessments due to my health, and that if walking up the stairs in a building with no lift makes me so unwell, it is ridiculous that the practicals weren’t moved. He said allowances can be made for my coursework, so I don’t need to leave the uni if I can’t carry out the practical part of our coursework (which never goes right anyway, so we always look at model results). He suggested I spend another year in halls due to my inability to travel much or walk any sensible distance, and that even though it was past the deadline the disability services could sort it out. He’s going to recommend that all my lectures next year are in wheelchair accessible locations (in case I can’t ditch Winston). And the list went on and on and on (because there’s a lot of crap that I won’t mention on here because it makes me feel so angry and hopeless that I cry when I even attempt to summarise it). He said if ever I need any support at all I should just go to the disability services (he’s my disability advisor) even if it’s once a week just to rant. I found someone to talk to about my health, and it felt good, so I briefly summarised the bleakness I was up against.

I cannot explain how amazing it felt to finally have some support at university, someone willing to fight my corner. He’s determined to make sure next year is very different from the start, and said it was incredibly sad to hear that all I’d cared about was not missing deadlines or getting ill on campus, often to the detriment of my health (because I didn’t go to hospital when I needed to, and often ended up in a heap on the floor). He said he’d rather I just please called an ambulance onto campus. He’s going to change the document the university were given about my health and the accommodations they should make for it, and mention that I’ve been unsupported over the past year (I kept telling him I was scared of the university and didn’t want to upset anyone. He persuaded me to let him just briefly mention it). He asked why on earth I hadn’t been to see him about it all sooner. I said that I was extremely worried that I was making a fuss over nothing. He told me I was doing far from that, and that it was actually his job. I felt better. Actually, I felt happy. Happy. Actual happiness. (This isn’t even the good part yet)

I didn’t really have time to start freaking out about the hospital appointment right afterwards. I got to the hospital at 3:10, and didn’t leave until two hours later. Honestly, in that time… My life changed. (This is the slightly less awful good part)

The man that took away all my hope of a future just gave it all back to me. 

The man who left me to the grim reaper decided that he was now willing to try and save me from him, seeing as how I’m not dead (and he talked about a service dog so that was awesome too). I thought I was going to have to fight with him. I thought he was going to leave me to my fate again and watch me bounce in and out of intensive care until the grim reaper managed to pin me down. I thought the crushing hopelessness his appointments usually induce was going to overwhelm me all over again and I sat there with two of them looking at me, preparing myself for the emotional pain that… Never arrived.

My guard was up and I was terrified, shaking, wanting to throw up, trying to look anywhere but at him… For no reason. This time he talked about heart failure and varied kidney function and stuff that was nothing to do with him (although he really does want to look into the kidney stuff more, but getting blood from me is impossible, which is why I haven’t gone to have the “weekly blood tests” I’m meant to have at all since they told me I had to – I do not want a long line yet. He does however, think I should definitely go and get the bloods done, because he’s all concerned about my kidneys even though I have a separate consultant for that). And then he got around to the bit of me he has to think for, the health issue he is meant to be helping me with

“Well, the situation doesn’t seem to have changed much.” Here we go again,

This is very dangerous. Your body can’t keep doing this (he means the medical emergency that frequently puts me in intensive care and on an almost monthly basis almost takes my life), each time it does you’re at a greater and greater risk of… It’s incredibly dangerous.” Yes, I know, and it’s going to kill me and you don’t know how to stop it because you can’t be bothered to try and…

Have we ever considered (some surgery that had only been done on one person in this country last time it was mentioned to me and is still only offered in two hospitals under very extreme/ desperate circumstances because I don’t even know why)?” Excuse me? What did you just say? Did you just… Did you just say you want to try and beat the grim reaper? DID YOU JUST SAY YOU WANT TO FIGHT FOR MY LIFE WITH ME?  The stunned look on my face must have been misinterpreted as one of horror, because he put his arms up like I was about to shoot him and said,

“Ok, ok… Not necessarily that, but this isn’t a typical case at all… I think with you we’re going to need something… Drastic.” Like what? I think but am still too stunned to say.

“Ok, alright. We’ll talk about it next time I see you.” No, no, I’m relieved I’m not freaking out, let’s talk about it NOW! I just can’t believe you’ve changed your mind about seeing a point in trying to… Try. I suggest another, more common treatment that I’ve tried before, because I’m too stunned to be thinking properly or saying what I want to say, and the one he is suggesting involves an entire new team of doctors at another London specialist hospital where I had horrific experiences when I was younger.

“Like I said, I think we need something more drastic with you if we’re going to get anywhere at all with this.” He says softly, gently nudging me out of my denial. Preferably before it kills me right? Who even are you? Are you real? WHO ARE YOU AND WHAT HAVE YOU DONE WITH THE CONSULTANT WHO WAS PERFECTLY HAPPY TO LEAVE NATURE TO TAKE ITS COURSE??  I looked at my psychologist, who I’d asked to attend the appointment with me because the last one left me so hopeless that afterwards I was so much of an emotional mess I couldn’t even walk and even cried in front of the doctors. She smiled at me. I looked back at my consultant, sat in his chair, and then behind him to the kitchen window of the flat I used to live in (in my university halls, until a week ago).

Yes, everything else going wrong in my body is going wrong, and no, he can’t stop this or fix the issue or deal with anything else – but I’ll be back to the same chance of dying as everybody else who has this condition (well… only in regard to this condition, but this is the thing most likely to kill me and most IMPOSSIBLE to fix, so that’s awesome), and that’s all I want. In the meantime, I’m probably going to nearly die again, and I’m prepared for that. Maybe this time will be the time we don’t win, maybe this time will be the time that the grim reaper manages to get me to elope with him. Maybe this is too little too late. But beyond that almost inevitable event, I think there is hope… Hope where there once was a let down. And with hope, who cares what happens? Because there’s suddenly a point in holding on and a lot more to hold on with.

No more fighting to get support from the people who I rely on for it. No more fighting to stay alive alone. No more fighting to convince someone that my life is one worth fighting for. No more fighting for this consultant to try for me… No more fighting. No more wearing myself into the ground. Who cares if there is fresh concern about my kidneys?

Today was amazing, even if the points about my worsening health were far from it, because suddenly I have hope, suddenly this consultant is willing to try like I needed him to. And when I got back to my parents’ house my dog was there and the two new books I ordered online had arrived (one of which is another Remarque – Spark of Life).

So today my life changed. Genuinely. A single consultant made that much of a difference by doing what I wish he’s done months ago when he pretty much gave up (seriously, thanks to him, I very nearly didn’t make it to 20).

“Change is hard at first, messy in the middle, and glorious in the end.” – Robin Sharma 

I didn’t believe the end of this quote either, but as music flooded my ears on the way home, it was all I kept thinking. I also kept thinking that uni dad was right, and part of me wanted to tell both of my uni parents that there was hope now, that they’d got me through the hopelessness and they were both SO RIGHT. But I can’t talk to either of them so… Anyway. The relief is indescribable. Finally someone at uni, and the consultant who gave up on me, are on my side.

The fighting is over. 

This is all going to be ok.