Winging It

I saved my own life again. Waited for a doctor to show up and take a blood gas as my acidic bodies were almost triple the acceptable limit, and this time no doctor ever showed up. But I did. My brain did. Exhausted from a sleepless night the night before, I was forced to repeat my actions. But I missed some doses. When my bloods were checked in the morning, they were outside of normal range, but almost there. That was good for me. My bloods will at best sit slightly out of normal range, unless you pump me full of so many IVs that the tree of my central line has this many branches (if you don’t want to see a picture of a central line… run away immediately).

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Meet Forrest the central line. Yes, he is no longer in me. More on that in a moment. Saving the best parts until the end. The dark blue bit in the middle is where he was stitched to me – anything below that is part of the tree that ran down the length of my entire thigh, all of the light blue bit was… In my venous system.

Dr Survival came to see me. I pleaded a little. I’d been winging it, with restricted access to the medications I needed to properly fix things. Additionally, although I lack any ability to feel stress at the minute, my subconscious clearly has been, because on the occasions I managed to drift to sleep, I woke drenched in sweat to the point that I had to change. I said I could wing it at home, and he made it very clear that it would be a case of “winging it” – hoping. I am even more unstable than usual, and I am usually told that each day I play Russian Roulette with my life (legitimately been told this way too many times) so… I have to be on it. But it seems safer for me to be on it than they do. In the words of the registrar who found out I was studying biomedical science (or, as he called it “Ah, medicine in far more detail than the medics” because he’s studied both that and medicine at the same university as me) – I have an understanding of myself and how to help myself far superior to any doctor that hasn’t been fully immersed in the complexities of my case.

I pointed out that they had done nothing, that without the knowledge stored inside of my brain, last December would have happened again. If I hadn’t learned to keep injections and needles hidden around my person and in the lining of bags, I would have been left with it all locked beside me, powerless to save me, and I probably would be dead, or at least back in critical care. Dr Survival looked at me. He knows me, because we’ve encountered each other enough. He was happy with bloods that in anyone else would make alarm bells ring and probably get them admitted. He told me I’d have to be in regular contact with my specialist community nurse, who had been messaging and calling me every day anyway. And he said I could go. At 10am yesterday, he told me I could go.

But things move slowly. Nobody wanted to remove the femoral line until right before I left, and some people were unaware that I even had it. So naturally, I took it for a walk to McDonalds (or as far as the staff are concerned, “the main entrance” – what they don’t know can’t hurt them… Although the sister totally knew) with my new hospital friend. We wanted edible food, because lunch was supposed to be fish but honestly just looked like white vomit. And I needed out. If the whole duration of being there is hard enough, the last few hours are so much more difficult because anticipation joins the show.

On the way back, I stopped at the Air Ambulance shop. The London Air Ambulance is based on the roof of this hospital, and whenever I’m admitted I sit by my window and watch/listen to it take off multiple times a day.

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The window. Not a bad view
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I just lay here and stare out at the helicopter until it becomes a dot so small I can’t see it any more. 

Walking down the road I see it sat on the roof of the hospital. Whenever I see it, I stop and hope for whoever they are going to. In the resuscitation unit I have seen the people they bring in, met the doctors who work on the helicopter when they’re working shifts in the resuscitation unit instead of in the air and have to deal with me because my body is being such an idiot. And I always wanted to help out. Buying a tiny thing didn’t feel enough, but that moment it was all I could do. I didn’t have much money, but I figured they needed it more.

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The guy opposite me in the critical care unit had been brought in by the air ambulance, and it just becomes a constant to my hospital life, so I wanted to support the amazing work they do, and I got a cuddly helicopter out of it so… (some day I’ll raise a proper amount of money for them)
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A second or two after I took this photo, the actual air ambulance took off and flew over the top of it. 

It was half 5 by the time I was discharged. No bloods were ever repeated, not even blood sugars (keep in mind that I have type 1 diabetes, so my blood sugar has to be tightly controlled – but never is, due to other stuff). The irresponsibility should have been shocking, but I was all dead inside, so I just waited for the nursing ward manager – who had until that point always seemed offish and abrupt – to remove Forrest the central line. She removed it and told me stories of when she worked in A&E, and she said it was in a really, really weird place. I said it was because they couldn’t get one in due to scarring, and her response was simply, clearly. People were really nice to me, even the receptionist who I’ve never spoken to but who, like everyone else there, knows my name and stuff. The ward manager eventually returned with my discharge letter (they told me to wait for an hour after Forrest had been removed, but I got up and walked around five minutes later because I didn’t care if it bled or not because I don’t care right now), and gave it to the receptionist to give to my nurse so she could pass it to me. The doctor that went to my uni took it out of her hand and just passed it straight to me. It was taken back out of my hand by the nursing ward manager and discussed with me. She gave me a couple of dressings and my mum had appeared.

I managed to piss my mum off almost instantly. She started telling me that I was doing the wrong thing to miss uni and she shook her head and looked all disapproving and said I was only making problems for myself. She wanted me to tell her what I was doing with my life for the next few days and talk about uni work and what I’d missed and what I was doing. And I was dead inside. Just dead. And I’d tried to tell her but like every other healthy person I told she just hadn’t understood. She doesn’t understand any of me. And I tried to tell her I didn’t care because I couldn’t care – I was dead. And then she got cross and said that she was just a taxi service in my eyes.

I went back home to my flat. I grabbed stuff, I ditched stuff. I went into a small shop with my mum on the way back and paid for the stuff she wanted to make dinner with. I bought chicken and potatoes and stir fry for the family of 4 that live in the house I never feel like part of (so I bought food for 5). I bought my mum a drink, and myself some food for the next few days because they don’t like me eating all theirs, and I bought a smoked salmon bagel to eat on the way home. I fell asleep in the car. I woke drenched in sweat, not remembering the nightmare, but knowing it had happened.

We got back. My dog ran at me. I felt nothing. He was so, so happy. He wouldn’t leave me alone. Normally I shower him in affection and am so busy feeling all the feels that I don’t gage his response to my presence and think he’s not too fussed. He was persistent. He wouldn’t leave my side. Every time I sat down he was on my lap, crawling onto me as much as he could, tail thumping, head nuzzling into my neck and nudging my chin. And I felt nothing. He is my everything, and I was so dead inside that he meant nothing. And when I start to feel again, that’s going to hurt like hell. He was so, so happy. For hours he was bouncing around me, his hips clicking which usually makes him stop and curl up in a ball of ouch. I sat and tried to hug him back, but I couldn’t feel. He eventually curled up on the sofa with me and fell asleep staring up into my eyes. If I could feel, I would have felt evil.

I showered immediately. Scrubbed over and over again until the smell of hospitals was gone. I sat on a bed with a non-plastic mattress and a thick quilt and it felt better than anything I’d sat on for a week. I ate food. I had dinner, and then chicken gyoza, and then 1/4 of an apple pie that I found in the fridge (with some ice cream), and then a fishcake, and then vegetable spring rolls, then prawn parcel things, then crisps (I bought everything apart from the crisps and the apple pie & ice cream). I was hungry. I hadn’t had proper food for a week. The weight in my stomach is water weight because my kidneys seem to still be rather upset, but I can tell by the prominence of my cheek bones that I’ve shed weight I couldn’t afford to lose. I don’t care right now though, so I watched the first episode of The Grand Tour (which I’m pretty sure wasn’t meant to be available when I watched it, but I’ve been waiting MONTHS for it to start up) until I fell asleep.

I didn’t tell any of my friends that I’d left the hospital. I messaged my new hospital friend because she understood, but nobody else. I couldn’t. There was a wall there I couldn’t overcome. I’d also shot myself in the foot that morning in the group chat. Uni Pal was trying to be all motivational. I was trying to explain how bad my mental health is right now, and she started telling me I’m such a fighter and I’ll get through it because I always do. And my brain was empty, but my subconscious was all asdfghjkl. And I said no seriously stop it and nobody spoke from that point onwards, which again, when I can feel, will make me feel like an utter dick.

Because let me tell you this. I have no fight left to give, but that isn’t going to stop life taking more of it our of me. And all people see is this transition of fighting passing from me to life, they see life taking it from me, and they assume that it was given. They assume I found the strength to hand it over, and do not understand that life is stealing pieces of me that I cannot function without. And I pretend everything is fine. I carry on. I don’t talk. So when I turn around and say that I am in a state, it means I am pretty much in the middle of a breakdown. And I know she was only trying to help, trying to pick me back up, but she wasn’t listening. It undermined what I was saying. It made it seem like I wasn’t ever allowed to fall apart. I can’t explain what it’s like to be so strong in the eyes of someone that you NEED to see your vulnerability in that moment so they can be there for you in a way that you need. And so I shut down more then.

I’m also done with medical teams. In hospital, I leaned on my specialist nurse a lot. I used her in a way I am always meant to have done. Things were a little easier. Then staff errors nearly killed me again, and I got out, and the need for her left. And I don’t want to engage. I did it myself.

I was caught off guard just now when a district nurse showed up on my parents’ doorstep to check up on me, having been contacted by the London hospital I just left. Pretty impressive, seeing as I’m in Kent and the address they have for me is in Mile End. I wouldn’t let her look at my central line site. I briefly said I didn’t even have an emotional reaction to the sight of my dog, and she said he was all over me and clearly determined to shower me with affection no matter what.

But I am currently incapable of loving the only thing in the world that I love.

What have I become?

I’ve cut everyone out. Health teams, friends (except hospital friends) everyone that I should need but just can’t deal with right now. I don’t even know when I did, I just realised writing this that I’ve closed off again. In so, so many ways, I’m winging it.

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Life is so much safer on the other side of this window. I am so much safer on the other side of this window. 
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4 thoughts on “Winging It

  1. I feel such compassion for you. And I want to tell you you are brave, even though that’s not what you want to hear (because how is doing what you need to do to save your own life brave, right?)
    Have you thought maybe you have PTSD from all your frightening experiences? You live so close to the edge and have had so many awful things happen. I don’t know what the mental health system is like in the U.K., but I know if it’s anything like it is here in the US, best of luck to you. But I know what you mean when you say that you’ve closed off. I feel like that too in my battle with depression and anxiety.
    Stay strong. And please know that there are those who do care for you, even if you don’t know them. ❤️

    Liked by 2 people

  2. Let me just say this. You got a raw deal and so did Angel. Neither one of you deserved to get chronic illness and neither one of you should have to spend over half your life in the hospital. Yet, in some ways, if you let them in, the hospital people will be family, too. You are ALLOWED to feel beaten and tired and vulnerable. Cry when you need to and when you feel better, allow yourself to feel better. You give so much. Wish we were there with you, but we are in our hearts. I hope by the time you are reading this that you are able to feel the sheer joy and love your beautiful dogs brings to you and you to him. I hope that good things are beginning to happen. I wish I knew how to make things better for you.

    Liked by 1 person

    • Thank you for this. I’ve had a little hospital family before, it was nice, but I got hurt. I have a teeny tiny one at the minute, but I’m very very wary.

      I’m still full of nothing, but when I feel again I know I’m going to feel pathetic, because I’ll feel like I’m not allowed to feel this way. I’ll feel ungrateful and I’ll hate myself for that. On tv shows and interviews the people never fall apart. So thank you for telling me it’s ok to. I think that will help me.

      I wish I could get out of my own head right now and be there for you guys too. Hope Angel is doing well. Sorry I haven’t emailed. I don’t know how to at the minute. No excuse I know.

      Like

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