It Shouldn’t Be Impossible… So Why Is It?

I’m not entirely sure how to start this post or how to stop it being a mess of word vomit on your screen, so I will apologise in advance and then… begin.

I fell asleep to the sound of Bastille last night, which means that it’s also what I woke to after a pretty terrifying (and hospital-themed) nightmare. This was a good sound to wake up to, because it instantly pulled me to somewhere safer. I hoped that after some sleep, my mind may be better equipped to fight the fires razing it to the ground; but hope, as I have been taught by experience, is often far above reality. 

The alarming downward spiral my brain hopped on last night was met with an incredible level of kindness and understanding by the staff. Nobody has ever seen me like that – even myself. The fact that it was a thing at all was in itself highly distressing to me. But among all the feels, I found words to describe how overwhelmed I was, and after being told that it was ok and understandable and brave and other such illogical responses, those words eventually filtered through to the next shift of nurses (as did news of my tears). It also reached the doctors. The consultant on the ward this week is also the clinical director. Upon learning of my overwhelmed state and realising (as everyone else already had) that a whole group of doctors walking into my room was going to be way, way too much for me, he wandered in by himself and explained that he thought that would be better. When I was in hospital before, after several doctors did awful and sometimes negligent things which traumatised me and on occasion left me in ICU intubated or almost dead (both physically and eventually emotionally), my paediatrician used to make ward round skip me and walk in alone so I wouldn’t be overwhelmed. My brain isn’t sure how it feels about this parallel. 

He stood at the end of the bed and spoke softly, kindly. Like a human. My brain pedalled desperately in an attempt to seize its opportunity and find its voice, but the chain kept slipping. He confirmed what I was told yesterday – the minor surgery today has to happen. He said I may be here a long while. I tried to process that but still the chain kept slipping. I couldn’t words. I tried not to cry just at his presence and at the same time found a huge amount of comfort in it because it meant a plan and an explanation and… reassurance. 

He asked me if it was ok to go ahead with it, and I said yes. I said yes in a voice that wasn’t mine – it was quiet and montonous and strained and I was dead inside. He asked if today was ok, because it needs to happen as soon as possible. Again, defeated and unable to fight myself, I made what I knew was the right call. I said yes. Because logic is still there. Logic knows that I need this procedure and I need these drugs. It isn’t that I’m not thinking positively or logically. It’s not that any of this is a conscious choice because I’d choose the procedure – I did. 

Consciously I force my thoughts to be positive and logical and do what I know has to happen, but subconsciously this huge tidal wave gathers and swells and sweeps all that away. Consciously thinking things to override feelings all the time is not only ineffective but exhausting. I didn’t have the energy to explain how I felt. The pedals were still slipping and I couldn’t find words and I didn’t have the energy to reawaken my emotions. So I said yes, just like I did with the blood test yesterday (and even though I freaked, logic made me hold my arm steady and let the doctor feel for veins as subconsciously I collapsed – thankfully the latter was obvious and noted via the involuntary expression on my face and change to my body language and voice, and she decided it was too much for me to deal with then). 

He left the room and the chain stopped slipping. My brain pedalled so fast that it swiftly arrived back where it had been the night before, and tears occurred. This was not a good time to need IVs. My nurse walked in, concerned because he had been told about the emotional effects of everything. He told me he couldn’t even imagine what this situation is like, but that tears were very much an understandable part of it and that it made complete sense to him. And then he went to draw up the IV that makes me feel like death. I mean honestly, it makes me feel so unwell I can’t get out of bed, it leaves me unable to look at light and with awful eye and head pain, and my body generally just rebels against it. Physically my current situation isn’t hard, it isn’t unmanageable – I can cope with the pain and all the rest of it. But I cannot cope with the mental impact of all of that, especially not when the awfulness is added to by EVIL IN IV FORM. 

He offered me IV pain medication. Logic told me that was a smart idea because my chest hurts A LOT. But physical pain is something I’m used to, something I can handle, something I can live with (if only the emotions it induces were easier to handle). I wasn’t bothered by the pain. I was dead inside. And I still just couldn’t. That was the first thing I refused. Then two more IVs. Then EVIL IN IV FORM, which I actually need to bully my body into better health. I tried so hard to say yes, I’d sometimes even say it and then something else snaked around my logic and choked the life out of it and I’d just collapse under its weight and sit there torn – silently trying not to let go of the right thing and desperate to be able to go through with it but being pulled back by something raw and animal that I cannot control. 

I honestly don’t think I can do this. I don’t think I can go through with it. 

Writing this has been interrupted by a visit from a diabetes specialist nurse who I can only describe as a LEGEND. He’s awesome and pops in for a catch up when he’s doing the ward rounds because type 1 diabetics are very rare in this hospital (there are currently 1 or 2 of us among a list of patients almost as long as his arm, and the record is 3 type 1s at once). And then the speech and language therapist walked in to discuss the inflammation in my throat and how I’m going to get nutrition when I am unable to swallow any consistency of food or drink due to the after-effects of being intubated (which is why they are reluctant to intubate me for the procedure today). Talk turned to NG tubes and again I know that’s a smart and sensible idea so logic tried to engage, but the pedals in my mind slipped again and it hurt and I was like “I’m so sorry I can’t do this today. I can’t do anything today”. I refused another thing. 

The nurse keeps coming in to give me EVIL IN IV FORM and I literally just cannot even let him prepare it. And I don’t know how to go through with this procedure. It could mean bad news if it goes ahead and I can’t deal with that. I don’t know what’s wrong with me as a human to make me behave this way. I don’t like that I can’t control it and that it speaks over the logic and appreciation that I am consciously and deliberately aware of. Have you ever made the right call and not been able to take it?

They’re pushing me and pushing me to have EVIL IN IV FORM because I need it and it can cause all sorts of problems if I don’t, and they are giving me logical arguments and going on and on like I’m clueless. It’s too much. My brain is making that argument too all by itself, but something else just shouts it down. They don’t appreciate that, they go on an on and I’m so terrified of medical staff because of my PTSD that it feels like bullying even though it’s concern and kindness. They see this situation without any of the emotion, without living through the things I have somehow lived through, and they cannot possibly understand that it isn’t as simple as the black and white scenario they present and push and push. I feel trapped and pressured and even more overwhelmed and so now I’m just sat crying as I write this, wondering what on earth possessed me to post this and feeling the need to apologise for doing so. I feel so helpless. 

I don’t know how to do it. Any of it.

I’m so broken I don’t even want to run away any more. There’s none of me left. They’ve taken it all. I’m gone.

This Time It Was For Me

At the moment, the title of this post and the accompanying image say it all. I’m raw and reeling and still in the critical care unit of a hospital that has now saved my life twice in as many weeks. I have so many thoughts and things to relay that I can’t make a proper post right now. I’m an emotional mess, I’m lost, and I don’t know how to do this any more. I’ve written notes, I’ve thought thoughts, I’ve cried more tears than I’d care to admit. In a few days, if I’m still on the planet, I’ll probably write a few long, and very therapeutic (for me, most definitely not you guys) posts. Until then, know that I’m alive. And that I no longer know how I feel about that fact. Which means I don’t know how to feel about myself. I am angry at my body for the importance of the moments it has taken from me, I am angry at the world, I am angry at myself, and behind that anger is whatever on earth you call what I am actually feeling. They saved my body, and that’s where they stopped. I’ve no idea where I went or where I am. 

Right now I’m so far from alright that all the money in the world couldn’t buy me a taxi fare back to there (yet an ambulance managed to get me here in minutes).

I’ll post soon.

No way but through is what I know I should put. But I can see no way right now.

I can see no way.

Against Medical Advice

“It was by the skin of your teeth this time. Literally.” Male nurse with fellow mutant pancreas says, preparing to take out my central line.

“I know, it was one of the worst episodes I’ve had.” I reply, having been told enough times on this admission just how close I came to death.

“It does’t get worse than that, trust me – I used to work in intensive care so I do know what I’m talking about.”

“How do you even know it was that bad?” I wriggle into the comfort of my denial.

“I can read can’t I? I’ve seen your notes.” Damn. My body’s reputation precedes it.

“Normally managed people have a buffer before things go so wrong. You don’t have that. It won’t be there now. You’re too unstable and this case was so severe that your body will snap back into that state much quicker and much worse, you do appreciate that, don’t you?” I nod, not really letting what he is saying sink in because if it never gets in it can never linger and stagnate and tear me apart.

Before we leave he has a long chat with me as my fellow third wheel packs up the wheelchair. My bloods are already skewed because we checked them an hour after the central line was out just out of pure curiosity. I think he regrets removing the central line. I certainly do. I tell him I’m scared and he asks if I am ok again. He goes on and on about how unstable I am and how serious this will be and how quickly it will get so bad. Over and over like a stuck record he tries to hammer home that this could kill me, how bad this time was, as if I have any control. Finally his dramatic and over-serious conversation (or, as my fellow third wheel puts it – realistic) draws to an end.

“You can’t afford to watch and wait. The second you start to feel unwell or you lose control, you go straight to a hospital. I know you want to avoid them but you need to go. This case was so severe that you are going to deteriorate extremely rapidly in future.” He goes on about how serious things are, about how we have to monitor my condition in the car on the way home and then he looks at my fellow third wheel with a strict plan and addresses him instead until the severity has been drilled into his brain.

“This can kill. It will kill. It very nearly did. You know that. You can’t go through an admission like this again. You know that too.” I thank him, and he lets me leave, his concern evident in the look on his face.

“He’s a bit of a drama queen.” I say.

“With reason. You know he’s not.”┬áMy fellow third wheel says. We are both a little terrified, I think. I’m not sure what I say next, I probably try to play everything down to reassure him, but his response is, “You nearly died last week. It doesn’t actually medically get any more serious than that.”

He wheels me out the front of the hospital and his dad meets us with his car. His dad is lovely. He leaves my third wheel and I in the car and goes into a supermarket to buy us drinks and food for the journey. He tells me off for apologising and is so kind and understanding about the fact that bodies can be poops and tells me there isn’t anything that can be done about it and that we are humans and we all help each other. I thank him every few minutes. In the end he gives up protesting and just tells me I am more than welcome, but he won’t take the money I keep offering him for petrol or for the food.

We haven’t even been in the car for an hour when it all goes wrong. My fellow third wheel’s dad diverts the car into Ipswich after we call the ward I just left and speak to the nurse who gave me the long talk about how serious everything is and he tells us to go to the nearest hospital with the discharge letter we were just given and explain everything. Urgently. Now. Without waiting to get to Kent. He sounds extremely concerned on the phone apparently. Good. I hope he’s bricking it. I hope it feeds back to the consultant who didn’t listen to me when I explained that my bloods were fine on IVs but usually took a few hours and then suddenly deteriorated very rapidly. I hope she is terrified for a second or two. I want her to know. I was right. Unfortunately, I was right. And he knew this would happen. She just wanted me out of her hair because she had no idea what to do.

My fellow third wheel voices his disappointment. If I had money he’s gladly leave and let me get a taxi home. His dad is unfortunately as stubborn as I am and refuses to leave me. We sit and talk while my fellow third wheel wanders off, and he says I shouldn’t apologise, that we are all humans and we help each other and he doesn’t mind at all. He won’t leave. Neither of them will. Like father like son, I guess.

The nurse is horrified when she sees my bloods. I knew she would be. She is not in favour of me getting in a car back to Kent and going to my local hospital (which I have no intention of doing but say because everyone wants to hear). She wants me to be seen by a consultant. I know I will be put in resus. I know once they see my bloods they won’t let me leave. I don’t want to be admitted so far from home now that it is clear neither of my teams will have me moved closer to EVERYTHING I KNOW. My faith in hospitals and doctors is currently non-existent and this hurt and betrayal lingers on my mind. She tries and tries to persuade me to stay. Her consultant wants to take me through. I sign a self-discharge form saying that I am leaving against medical advice, and she tells me to go to my local A&E and gives me a copy of her triage paperwork. She says if on the way I get any more unwell or start to feel as symptomatic as I should be, I should just immediately call an ambulance no matter where I am. I lie and tell everyone that I will. In truth, in that moment, I have decided I’d rather just not do any of it any more. This isn’t logic or truth speaking, it is emotion and fear and hurt. But it is speaking loudest, and it wins.

My fellow third wheel pushes me back out to the car in the wheelchair his dad grabbed upon our arrival, and his dad helps me into the car. We head off for Kent.

I wake up with my fellow third wheel (who is sitting behind the driver’s seat, and I am sat behind the passenger seat) asleep with his head resting on my shoulder. I have fallen asleep in turn with my head resting on his. I’m not sure how we ended up arranged this way, I figure he must have fallen over, but it is very warm and I attempt to move him back. In his sleep he jumps, tenses, and sort of moves away a little bit. I sleep until we are almost at my house.

My dog flies at me, ecstatic. My fellow third wheel helps me walk to the front door. He’s already had to hold me up and walk me to the bathroom today, and wheel me into a disabled toilet. He’s watched me almost die and seen me in many highly undignified situations over the past week. We hug in my hallway. I thank him. I apologise. (Even though I have been doing both of these things ever few waking moments the entire way home).

I am extremely dizzy and the symptoms I know to look out for are slowly beginning to build. I crawl up the stairs, wondering if I will ever see them properly again, a time bomb ticking in my veins.

Against medical advice, at 3am (well, at this stage 4:20), I sit and write a couple of blog posts instead of seeking medical help. Because my local hospital were not willing to help, and I feel too awful to bother them, too scared to approach them as a result.

 

They’ve given up on me again and I do not want to die. I want to fight them. I should not have to fight the people with the power to save my butt just to get them to try. I should not cry at the thought of their faces. I should not be too afraid to seek their help, too ashamed and let down and unable to see the point of doing so.

It’s here again already.

And one time very soon there will be no way through.