This morning I got to return to London, to go home for a bit. Unfortunately, I went straight past my new accommodation and my university, and to a hospital from which I could see the buildings I will soon be attending lectures in. I had stayed up until 2:30am to watch the Olympic swimming finals, fallen asleep just as they started, and woken up to see Adam Peaty being awarded his gold medal. I went to bed shortly after, and woke a few hours later exhausted. I was not in the mood to be going to see this particular person in this particular hospital. I wasn’t in the mood to be approaching a hospital at all actually, but I did. Or at least, someone who looked like me did, because the person sat in that chair was not me.
I’m normally terrified of my consultants – passive and quiet and unable to look at them when they walk to me because I’m shaking just at being in a room with them. I speak up, am ignored or put in my place, and back down. I am never rude. I never raise my voice. I never push my point any further. But I have kept myself out of hospital for longer than that health team (who I went to see this morning) ever had, without any input from them, without a plan… Without any thought from them that leaving me to the grim reaper again was anything other than acceptable… And it lit a fire in me bigger than the one we passed on the way home.
I kind of first realised that the filter between thought and speech may have dissolved (and that my vocal chords had therefore gone rogue) when I was asked what I wanted to discuss in the appointment and what I needed to discuss, and my response was, “I don’t really. I’m fine now. I’ve got this.”
But genuinely, it was true. Like I said a few posts back, I completely gave up on the teams of health professionals looking after different health hiccups, most specifically this one, because the pain of holding out in the hope that they may see some point in pushing things forward and actually trying to change a plan that keeps resulting in my frequent near death, was eating me alive. The only way to free myself from it was to stop hoping, and to start acting. I didn’t want to die. I also wanted a life. In order for that to happen, things needed to change, and the only way they were going to change was if I changed them.
I sat there and looked at her. We went down the whole expected route of conversation. My mind chewed through its leash and ran wild and took every opportunity to make its point. So for example, when we discussed that I shouldn’t really be going swimming, but that I had been swimming, my mind decided to add that it was the only way I could cope, and that I’d felt so helpless and defeated and scared that the only way to move forward had been to return to a last resort, because “you guys” (I was referring to her and her colleagues) had not adequately supported me or seemingly taken into account the mental impact of my physical health.
“I was forced into a situation where I was about to break. And I got a choice about in what way I broke – physically, or emotionally. Only one was inevitable, and sacrificing that aspect of my health was necessary in order to save the other. I’m a lot cleverer than you think I am. I hide it well because it’s my little secret weapon. In this case, the potential benefits outweighed the risk.” I made my case well. I meant in terms of the swimming. I meant in terms of walking away from hospitals while my blood has shown I’m in a medical emergency because my relationship with health professionals is so bad at the moment that I can’t do that to myself. I meant in terms of giving myself IVs at home when I don’t have the equipment to do that so have to crudely fashion my own from the needles, syringes and lines that I have.
The conversation got ridiculously frustrating and the responses showed that at various times over the previous appointments I had not been listened to. And then I’m not even sure what she said, but she loaded the gun in my mind. Click click. BOOM
And off I went.
For half an hour. I went through it all. I went through how their care had made me feel, the impact they had had on me, the things I had been driven to. She said clearly something was working and I pointed out that the things I am doing with my medication lately are risky and should not be done outside of a hospital. I also pointed out that I’ve been ill enough to be admitted for a couple of weeks now and had no intention of doing so at any point. I was angry. She said this was good. I pointed out that anger is an acid which is eating me alive and that it wasn’t acceptable that it had ever had to exist within me in the first place when these people were supposed to be trying to save my life, and that I felt they were just sitting back and watching me almost die over and over and over again. I said that I wouldn’t be able to live with myself if I was them, I said that they way they had left me was unacceptable and it made me feel like I wasn’t worth trying to save and therefore wasn’t worth existing.
I said it was disgusting. I said I was disappointed. I said I felt let down. I said that I felt they were leaving me to die because they already had many times and they’re lucky someone else picked up the pieces when I ended up in resus with the grim reaper holding me in his arms. I said I had never wanted my care moved over to them, but they insisted in taking over from my previous consultant. I also pointed out that the consultant they made butt out of my care did more for me in the first month of seeing her than they had done in almost a year, that she accepted and understood and respected my PTSD, that she worked with me, that she had plans and lots of treatments to try but that they needed me to be admitted in case it didn’t work out and that she was trying to get me to see someone to help me through that. I pointed out that they have done nothing. Not changed anything. Told me things we might try and not implemented them, as if the thought was enough to hold the grim reaper back, and that in the few months since then, I had nearly died multiple times and they now refused to make a plan. I mentioned Norfolk, when they washed their hands of me and refused to tell the Norfolk hospital a plan or have me transferred, and that I was left with no other option than to d stupid, risky, unorthodox, dangerous things with medications that can easily and quickly kill if things go slightly wrong.
I said there was no communication and that I felt like I was lost in a giant game of Chinese whispers (she accidentally beautifully proved my point a few minutes later). At times my voice was louder. At times it was quiet and breaking as I pointed out that I had asked for help so many times that I was now beyond waiting for it, that I had emailed her with that word at the end and got nothing of the sort, that it as just me now and I was the only person that had my back. I said I like it that way, that suddenly now I feel in control and I’m more relaxed because I know someone is actively doing something to try and save my life because I am. I said a lot. I said a lot that I don’t want to share, not even here. It wasn’t rude and it certainly wasn’t personal because I’m holding these people at arm’s length, but it was emotive.
She just sat there, and each time I looked up at her, she was looking at me.
And then right at the end. Right at the end. She mentioned a service dog. She asked if I’d thought about it any more and we talked about how much it could help me. We discussed how, along with warning me when I am life threateningly ill before I become symptomatic (which I now don’t until I’m way too far gone to fix things myself), it could be trained to wake me from nightmares and help bring me out of flashbacks and provide support that way. Then I mentioned that because I now can’t move into my own flat because of the ex-future-flatmate situation, there was no way I could persuade a landlord to let a puppy live with me before it was certified, and while it was a service dog in training. She asked if there was no way round this, whether I could discuss it with the manager of my student halls. It’s something we will discuss when we meet next week with my least-trusted consultant. I said I didn’t want to see any consultants, none at all, but that the only one I would consider seeing would be my cardiologist because he’s a really nice guy who genuinely cares and… I want to swim again and he’s my ticket to swimming. She started talking about heart surgery. We discussed the likelihood of my hear ever being happy with swimming. Then she asked me about going to see another new consultant in a different London hospital to help me with the emotional impact of a physical health hiccup. I was like NOPE. It was not the time to bring that up.
In my mind, my parents are no longer standing between me and a service dog. I crave the quality of life and independence that we think that dog would give me back, not to mention the companionship to fight the loneliness, the comfort during hospital admissions, and the boost to my sense of self-worth. It will actually save my life, but it will also give me a purpose and motivate me to get up in the morning, as my old Labrador does now. It would just help me to cope better all round, and stop me living in fear of not waking up, because quite often when I’m life threateningly ill, right before I become unable to walk or really breathe, all I want to do is sleep, and I genuinely have no idea anything is wrong. Now I don’t even get that sometimes, and it is the not knowing that terrifies me. I don’t even know why I’m even bothering to think of this. Nothing is every going to change and you guys probably couldn’t care less about some pathetic 20 year old who needs to get a grip and also accept that life is not going to involve a service dog for quite a while, if ever.
On the way home from my appointment we drove home a different way to pass Mile End Park Leisure Centre, which I am thinking of joining up to instead of the Olympic aquatics centre because it is so much easier to get to. There was a lot of traffic approaching the Blackwall tunnel, and messages inside it on the light-up traffic screen things saying “POLICE AWARE”
“Aware of what?” I asked.
Only THE BIGGEST FIRE I HAVE EVER SEEN. It was in a club right by the side of the road and in front of a huge gas storage thing which in the picture I took is hidden behind the huge billboard. I’ve never seen so many emergency service vehicles, they had come from all over London, more than one borough. There were ambulances and lots of police and so many fire engines and fire vehicles. There was a fireman on one of those extendable arm things directing water into the burned out shell of the club, and the smoke billowed into the sky. There were flames raging next to the club though, behind bushes, in a recycling plant or something. My mum and I had never seen a fire up close before, and this one was HUGE and worryingly close to the road. We passed it at 12:00 midday and it is still burning. The smoke started billowing across the road when the wind changed later and the fire is now very close to a HUGE gas storage thingy, so they have had to shut off a large area because they think it may explode. I feel so sorry for the people whose working lives depend on the building and areas that have been burned out, and I’m still worried that people may have been hurt.
When we got back to Kent, I went to collect the netbook that I am now typing this on. I used up some of the remainder of my student loan as my persona laptop is too big and heavy and expensive to take to lectures and carry around London, and the one I was given by the uni for being a disabled student is equally as wide but even thicker and is so heavy I have to lift it with both hands. This wasn’t practical when I was in Winston the wheelchair, and also means that I have to carry two bags or spend about five mintues trying to shove “The Brick” as it is affectionately named, into my rucksack. So I got a smaller, much tinner, extremely light netbook to take to lectures and, in theory, only to use for uni work. I will use “The Brick” (who is also covered in laptop stickers so looks to awesome not to use) to do my coursework and write essays and backup all of my lecture notes, so that while I’m in my room all my uni work is still done on that computer… But I’d like to have something more practical to carry around and cheap enough that it doesn’t matter if someone stealis it because it only has some (backed up) lecture notes on it. This was an impulsive and strangely practical purchase, coming in at well under £200.
The guy that handed me my laptop thought that I was 12. 12. I haven’t been mistaken for a 12 year old since I was 17! He thought my student ID was fake because apparently I looked so young. I eventually managed to persuade him that I was a university student by naming all the bones in my hand, and explaining that he had just used his occipitofrontalis to raise his eyebrows in surprise. He then decided I was indeed a university student, and gave me my (purple!!!) netbook.
I bought a shirt, and was horrified when a size 6 (US size 2 I think?) was loose enough on me to fit almost another entire me into it. I considered ditching the water tablets and retaining enough fluid to look normal human sized and fill it, but then decided that the puffiness was not worth something as shallow as my appearance.
And then I got home and fell apart. It doesn’t matter why. My mum already got really annoyed and had a moody tone because she doesn’t understand anything she hasn’t personally experienced. I don’t like to cry. I get angry at myself when I cry, I hate so obviously showing my emotion and feeling so weak and vulnerable. So I generally don’t. But I went upstairs and cried so hard I couldn’t stand. I sank to the floor and crying just took all of my energy, and I didn’t make a sound. I curled up against the box my netbook arrived in, and sobbed against it, silently screaming and gasping for breaths that there weren’t time to take. I paused, stood up… And did it all over again. Ten minutes that time, and every time I thought it had stopped there came a fresh wave and I just buried my face in the dressing gown hanging off of the back of my door so that I couldn’t see myself. I didn’t want to see myself crying.
My mum got annoyed at me for crying. She could see that I had been.
I let her rant. I went back upstairs. I cried again.
And then I wanted to swim, as I had planned, as my brain dredged through that morning’s appointment all over again on top of everything else. But I wasn’t well enough. I was exhausted. I was sensible, for once…
Although I am still considering buying a road bike (which I mentioned in my appointment this morning, shortly before admitting that I knew I probably shouldn’t but hey, that team weren’t entitled to pretend they gave a crap about whether I lived or died or became unwell after their appalling attitude to my existence over the past 10 months).
My tooth. Still broken in half. Keep pushing the half that keeps falling out back up into my gum. It is extraordinarily painful at this stage, because hey, exposed nerve and half a tooth… But my dentist won’t see me until the 25th.
Ok now Tom Daley is on TV, which means the London aquatics centre is on TV, and I live right near there, so my brain is freaking out. Right. This post needs to end. And I need to continue watching the Olympics (because DIVING!!!). Oh wow I want to swim. Right now.
What even was this post?
I’ve no idea who was in that appointment, but she was so outspoken and unafraid that it wasn’t me. It was the fire that has been raging inside of me reaching the gas canister of opportunity and exploding out. It was a fire they started. A fire that almost razed me to the ground.
No way but through, anyway.