Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 


Bite Me.

The last couple of days have been something comparable with the lovechild of a hurricane and a rollercoaster… on steroids. Life’s favourite time to kick is when you’re already down. And yet… the kicks don’t even hurt any more. Not at the minute. There is no capacity to hurt, and when there is, there is no capacity to hurt any more. I’m starting to vaguely feel – not fully and not properly, but at least a bit more consistently.

This is where I’m going to make a weird request, because (unusually) I remembered that a handful of people are going to read what I write here. Specifically, that concern is about the 2-3 people reading this who met me before they ever read any of these posts. If you met me before this blog existed… Please don’t read the rest of this post. Not yet, anyway. I kind of… It isn’t something I want people who know me like that to really find out in a post, I think? I’ve chosen not to really talk about it to people I know yet, because hey it’s probably nothing, and I know I can’t stop anyone reading on, and that asking you not to builds a whole lot of intrigue. But please hang in there for a while. 

I mean… Now I continue, I guess.

I had a hospital appointment yesterday for a totally new thing. It isn’t new to me, but it’s the first time I’ve actually had it looked at. Long story short, earlier this year I started getting minor nosebleeds from one nostril. Then I noticed a small lump. The lump grew, the nosebleeds got far more frequent and much worse, and now there’s a constant trickle of blood down my throat and every hour or two, a red river all over my face. The lump now obstructs my entire nostril, is hard and has a bunch of blood vessels over it, and has recently changed in appearance. The back of my mouth has started to feel weird, and on the same side it looks a little different (like red and weird). I decided it was nothing, and certainly that something as pathetic as my nose wasn’t worth bothering anyone about. But I mean… It’s A LOT of blood now. So I went to see an ENT consultant, who was the first person I told about it to decide it may be a good idea to look at it.

He had an appalling bedside manner and was blunt and clinical and methodical, which I liked. He sat me in front of him and  looked at it, without saying a word got some equipment and briefly explained what he was going to do before he stuck a camera down my other nostril and into my throat, and then looked into my mouth… And then we sat across from each other at his desk and he looked up at me and without any build up said

Unfortunately there’s no treatment option other than surgery. We need to remove the mass and the underlying cartilage. Do you have any questions?

Yes! So many questions! But all I could say was… Is that going to hurt?

It’s a something-I-can’t-remember-because-I’m-half-asleep-oma, he thinks. Now I mean… Part of me had been expecting this little lump to need to be removed, but a much larger part of me thought I was going to be laughed out of his office, or maybe he’d make it bleed and just cauterise whatever bled and send me home all fixed. I did not expect him to say that there was a whatever-it-is-oma with exposed cartilage that is on/adhered to the nasal septum. Like… Surely exposed cartilage should… Hurt? Anyway he wanted bloods there and then, and a CT scan ASAP. He said he’d phone with the results. But when we went to book it all, we said I couldn’t do the scan until I’m back from uni. The first day I’ll be back for is the 19th. The scan is the first slot they have on the morning of the 20th of December. That’s… A lot quicker than I was expecting them to arrange it.

My mum and I then went for lunch, because she said that this time I had been “ok-ish” to have around. I didn’t want to go back – the whole way there I was dreading it, and she didn’t really want me to leave either I think. It was nice. We stopped at a random pub chain and ate some super nice chicken. And then we drove back to Mile End. And I was in this car that I knew was about to drive right back to exactly where I wanted to be, but that I wasn’t going to be in it when it got there. My mum pulled up outside my accommodation, got my stuff out of the car, we said a brief goodbye, and then she was gone. I hate that there’s nowhere to stop where I live. Goodbyes aren’t proper.

I went back to my room, let the door swing shut behind me and… Sobbed. I just sobbed. Uncontrollably. The room was so isolated. So… Not a family home.

And then my mum called to tell me I’d forgotten something, and I couldn’t stand speaking to her because I just wanted to go back to my dog and stuff. Same Cardiologist Uni Friend called me up and talked to me for a few hours. My plan was not to talk about my stupid nose until I know about it for sure and stuff. Oddly, I’m not phased by the thought of surgery or anything. I thought I would be or should be, but y’know… I don’t know whether it’s because I feel so ridiculous about it being my nose or whatever, but this one just doesn’t feel like something to sweat over. If the lump is harmless or has the potential to stop being harmless or if it isn’t harmless at all, the treatment is the same – get it out. I’m up for that – just get the thing out. It’s annoying, more than anything.

But anyway I was crying and I was like I don’t think I can do this. I didn’t know how to deal with anything, even for a day. I ended up almost falling asleep on the phone to my friend, and saying stuff that made no sense because I was falling asleep, so I let her go and cook her dinner and curled up fully clothed to go to sleep. My sleep was broken, it always is, but if you discount the 17-18 times I woke up or got up to treat my health hiccups, I slept from 7pm round to 9am. I was so tired.

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I did find time to tidy up and try to make my room look a little Christmassy. It isn’t much but it’s the best I could do.

And then I went to my hospital appointment. And as I sat there by the Christmas tree waiting to go in, I checked my uni emails, for some reason. And they are STILL trying to find ways to kick me out. Except this one may work, but is also ridiculous. They are getting the national crediting body (external to the university) involved, because I missed lab sessions so they are saying I might not have demonstrated the lab skills needed to become credited as a biomedical scientist. So many thoughts. Firstly, we do the same procedures in every lab – spectrophotometry, micropipettes, serial dilutions… It’s basically the same. The labs I’ve missed… Some were on the computer, one the theory was done at home… I’ve done all the skills before. To death and back. In fact, I’ve probably carried them out while literally dying. Secondly, there are people on our course who have never been to a single lab because they can’t be bothered. A couple of weeks ago, someone asked us where we are meant to submit lab reports to and how we went about it, because, half way through the first semester of his SECOND year, he had NEVER been to a lab session. Thirdly, why did nobody tell me that at the end of first year?

As if that appointment wasn’t bad enough.

I walked in, and we started talking. And she told me this story about this boy who didn’t look after his diabetes and didn’t think it would kill him but was warned and warned, and then died. Except she didn’t tell it like that. It was more emotive. And I was like… I have so many things to be scared of. And I told her about my heart being more of a pain in the butt, and my kidneys being a pain in the butt, and how I hadn’t told anyone about either of those things. But somewhere before that, or maybe during it, I just broke down. I don’t cry. If I do, it isn’t in front of people. It certainly isn’t in front of health professionals. And I just couldn’t stop. I will elaborate on why and what I said at a later stage. But out 45 minute appointment ended up going on for over 3 hours. She pulled her chair out from behind the desk and moved it so our knees were almost touching, and she leaned forward and we just talked. About it all. About all the things I couldn’t face. About how screwed my body was. About what triggered my PTSD. About where I wanted to go (in terms of a treatment plan or whatever) and all I could say was I don’t want this any more. I don’t know how to deal with it all, I just can’t cope. And she’d stop, and we’d go back, and we’d go through a whole other thing like my weight loss or fluid retention or mental health or whatever else until we ended up right back at that point. She was patient.

Anyway. I got to uni campus at 2 and sat with Same Cardiologist Uni Friend and Italian Uni Friend (two people then knew I was back, which hadn’t been my plan). I had an assignment due in at 5 that I hadn’t started. I got quite a way in, and then my computer restarted and I lost even the stuff I had saved. Life isn’t giving me lemons, it is squeezing them in my cuts. It felt pointless anyway, in light of everything else on my plate, especially as all this work may literally be for nothing now.

I concluded that the only state in which to submit my assignment would be on fire… Because that way it could never be marked, and I’d save everyone else by destroying theirs too. I was just over half way through when the fire alarm went off. I sat there with less than an hour to go and 1/4 of the thing still to do like well at least if I burn to death they might go a little easier on me. 

I was trying to care, and it just didn’t matter. Until eventually I started to focus on it instead of the everything else in my life, and putting the tiny amount of importance I could spare onto my coursework distracted me as we watched a guy try to turn his canal boat and have a crash in Regents Canal (right by the window).

I finished the thing on time. Same Cardiologist Uni Friend had to print it on her account because I forgot my student card. Italian Uni Friend had to  staple it because I couldn’t get into the library. I submitted the thing, and then I stood in the middle of the emptying science building, held my arms up in victory, looked up through the opening in the ceiling of the lobby that showed the first floor lab, and just shouted (completely out of the blue, taking myself by surprise)


Then three of us went to Stratford Westfields, where I bought a large meal in McDonalds, accompanied by a free Crunchie McFlurry (because student perks)  after I realised I hadn’t eaten all day and it was 6pm and I felt I needed something good after my day (not going to lie that’s the only reason I went). It was so cold out and I had only left the house wearing a jumper, so by the time we got there I couldn’t feel most of myself, my hands seemed to have so little blood in them they looked rather alarmingly alien, I was shivering violently, and got electric shock pains in my legs if I moved them beyond a certain point… So I bought a super cheap ski jacket… And 2 jumpers… And a Christmas jumper (all for under the price of a jumper in any other shop).

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Christmas at Stratford Westfields shopping centre. Maybe I should make it my aim to see a different part of London at Christmas time every day…?

I went Christmas shopping and got three things for my little brother to make up for not getting him a birthday present. I bought myself a book entitled Death by Stupidity – 1001 of the most astonishingly bizarre ways to bite the dust because I wanted to feel better about the fact that I’d nearly died a lot and… It hadn’t been in ridiculous ways. It’s a pretty funny book (also, people die in really, rally stupid ways).

And then, because I felt like it, I bought myself a second dinner – an AMAZING pizza.

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Only two slices of this beautiful thing made it all the way back to my flat.

And now this post, that I mostly wrote on the other side of midnight, but that will now be posted today and probably make no sense (just imagine that every “today” is actually “yesterday” i.e. the 1st of December).

Tomorrow lectures, then straight to another hospital appointment, then straight to an assessed lab session, which means I’ll have another bit of coursework due in another week. One of my friends is already fully into a revision plan already. Everyone else I talk to only has a maximum of 7 weeks of notes (and that person was only that far in for two modules out of four). Everyone is as behind as me (I have notes in lectures until about week 5, handwritten final notes for… Week 1). And they’ve been out in the real world living life, so that makes me feel a bit better.

Whoa this is way too long. I’ll stop. Bye. I mean, it wasn’t even that bad. It’s just been full on, especially with starting to feel a little bit.

Time for another dinner. At 00:20am. Like I said, bite me.

The Overflow

“Even the little things were now a challenge, one I didn’t understand” – Sarah Todd Hammer

There comes a point in the great tunnels of denial that we burrow ourselves into, when the roof caves in and bright, harsh daylight streams in to illuminate all the things we wouldn’t let ourselves see. I am not an idiot. I know my body is nowhere near what it used to be. But it is better than it was a month ago, I can now walk. I feel so much better, so strong, and yet… I am not what I thought I was. As I walked my dog for the second time of the day with my fellow third wheel last night and he encouraged me to stop and slow and say if I needed a break, I realised it was ok to admit my incapabilities to the pair of us… And I realised just how much I was wrecking my body in forcing it to walk so far (not far at all, just round the block, but way too far for me) again. As I pushed through dizziness and an inability to breathe because we had encountered a slight incline, I wondered when things had actually become like this. And I wondered why. Not why me or anything like that, I am perfectly accepting of the fact that this is the way things are and incredibly grateful to have been spared much worse, but I wondered why my body struggled so much. Why is it such a poop? Not a sort of why that you answer with a cause, a why that you answer with an explanation of what exactly has gone on in my body to leave me in such a feeble state (I already know but hey, denial and tiredness!) My inner scientist broke out and my inner frustration broke out and I wondered why it couldn’t do such a simple thing. It just didn’t make sense to me. At all. Suddenly I was confused by… Myself.

My fellow third wheel and I walked and talked and made plans for him to come and move in for a week when my family are on holiday and I’m home alone with my furry rock. We went back to my house and planned to watch TV in the kitchen, but my little brother and nephew kicked us out, so we sat on a step in my back garden with the dog, and we talked for well over an hour until it was dark out. We talked about service dogs. We talked about how I deteriorate so quickly now with no warning and no symptoms until way too late, and that it would be incredibly helpful to have an early warning system, which would mean far less hospital admissions and ICU stays (which is great because of the whole PTSD and hospitals thing). And then because we could, we looked at puppies and completely freaked at the cuteness of them and laughed a lot and shouted about the fluffiness so many times I was surprised none of my neighbours came round to complain. And I fell in love with a labrador-husky cross, and my fellow third wheel encouraged me to just ignore my parents and listen to the doctor that suggested the whole idea and just get a puppy and start training it.

He wanted to stay as late as was possible, but ended up getting picked up around half eleven after we watched a film. I say we watched a film, but in actual fact we just had Skyfall as background noise to our continued conversation about service dogs – the issues and the hiccups and the problems and stuff that were stopping me getting a puppy and training it either through the charity or privately, and potential solutions to those issues. My fellow third wheel invited me to stay over at his at some point so we could talk it all out some more, and has said I’m welcome to just appear at his house any time (obviously when he’s home and not busy). We spent four hours together and I was glad of his company because he stopped me overthinking the whole excuse me body but what even is this shocking incapability and now that I think of it when did I actually stop being that person that used to run along these pavements every day? thing that was suddenly a huge bother to me.

I just couldn’t work out when. I couldn’t work out how. That’s it. That’s the word, not why but how. How did this happen? How did I end up here? And when? When did this become normal? Did I just feebly roll over and accept it? Why did I accept it? Should I accept it? I don’t even know.

My fellow third wheel left after a long hug goodbye, and I sat down to type out my service dog benefits and draw-backs in a letter to try and shut my parents up basically (I don’t even live with them, but they made it clear that if I get a thing that will save my life then I’m not welcome in this house and I have to find a way to afford all of my London rent by myself – even though my uni fund currently pays it, they seem to have control of my uni fund and therefore may as well have a gun to my head). That started to happen. And then from absolutely nowhere I decided I wasn’t accepting it anymore. But “it” wasn’t their objection to a service dog, “it” was everything: being treated like a child, being made to feel like a substandard human being, being made to feel guilty by selfish attitudes, being judged and shouted at by my own parents for having PTSD, being put down and moaned at constantly, being scared, not feeling like I am respected, feeling like I’ve lost my independence and am more 20 months old than 20 years, shielding my mother from all the things that get to me to spare her feelings when she doesn’t even consider mine when she decides to rant about my health and make me cry…

5,000 words poured out of me. 5,000 words. I cried a couple of tears with almost every paragraph. The things I was writing about hurt. They were things I’m not allowed to talk about, opinions I did not feel allowed to voice, truths about this family that nobody will face and the impact that toxic familial relationships had on me. I put it all out there, how I felt, the impact of everything on me, because she never pauses to consider how I may feel, only rams her point of view into my mind and forces my own to fall out like overflow. I got angry at how selfish that is. I felt sorry that she was so broken because of me. I let it all out. Stuff I’d kept in for years (and the family feud that is apparently about me, which is petty and abominably selfish and insensitive and made me want to cuddle up with the grim reaper instantly but thankfully briefly until anger took place of that feeling). And I don’t know if I’m going to let her read it. I want to, but she hates to read the truth.

She hates to read what the people she picked for me to call dad (two of them – the one who made me abandoned me when I was born) did to me, the emotional scars they left. She refuses to accept a lot of the way I feel and refuses to listen to me because she lives in her own bubble of denial. She does a lot of the things she dislikes when her own mother does them. She doesn’t understand me and she just shouts whenever I try to talk to her. But I can’t do this any more. I can’t be in this house. I can’t do it. I feel so small and downtrodden and like an unwanted burden at the moment. I can’t do anything right – someone is moaning at me all day every day. Tiny things, they moan if I don’t load the dishwasher (which my little brother, who actually lives here still and is 13, never does) and then I get shouted at because I put the plates in wrong. Things like that, things that make me feel like if I can’t even do that right I must be a substandard human being because I screw up everywhere.

I am tired of my dad not understanding science at all and being convinced I am responsible for my own health issues (HELLO. NOT THE CASE). I am tired of being told off for sleeping when I’m unwell and can’t help it, and being shouted at for not doing chores because I’ve been home all day while my family “are all tired too but we’ve been at work and school all day and you’ve done what?! Nothing!” I know my body sucks. But on the days when no glucose at all is getting into my cells and my body has nothing to burn for energy, my body just shuts down. When my heart can’t heart any more, my body crawls off to sleep. When my blood is becoming acidic, I do nothing but sleep… (See the pattern here, it isn’t even a normal sleep, I don’t wake feeling rested. And tiredness isn’t the word, it is pure exhaustion, I can’t even keep my eyes open or lift my head or stand, let alone walk).

I realised they don’t ever hold back before just letting everything out at me, before taking their frustrations with work or each other (or mostly my health) out on me, and that maybe I shouldn’t shield them from my feelings for a change. I just want them to see. I don’t trust. I don’t feel close to my family and haven’t for a long time for reasons I will not discuss, but I want to feel close, and it makes me hate myself that I can’t let that happen. I let it all out anyway. And I’m terrified to let her read it (my mum) but I think she needs to. I don’t want to hurt her, but she needs to know why I am hurting, she needs to know the effect her actions have on me when she snaps and says stuff she doesn’t mean like “You’re ruining my life” or “You are pure evil!” She needs to understand that even if she doesn’t mean them (and denies ever saying them, which is why I occasionally record her rants so I can listen back and check I’m not insane) the things she says hurt me. Just because a few hours later she doesn’t feel the same way, doesn’t mean that I’m not allowed to have an emotional reaction to the words she threw at me, doesn’t make everything ok, and doesn’t undo the damage that by that point those words have already done. I know she doesn’t mean them and I’m still stupid enough to let them get under my skin. It’s just what she does. I care about her and I am worried about hurting her feelings, and a little afraid of her reaction.

I am so distant. I have been distant from a lot of people for a long time. It is lonely and isolating and I hate it but at the same time it feels so much safer and I can’t help it, it is a defence mechanism. It’s what happens when you’ve been through the stuff I’ve been through. I don’t expect love and I don’t look for it anymore. I don’t feel loved and I haven’t for a long time, by anything other than my dog. I don’t trust. At all (unless something has four legs, huge canine teeth and a tail). I hate living this way. It is isolating and horrible and it only leaves more room for depression to spread its wings but I can’t help it. My mind is an animal and it learned. It learned things it cannot unlearn. It learned that humans will hurt you. All of them. The will beat you, they will make you bleed, they will belittle you, they will shout, they will make you feel like less than dirt, they will put you down, they will let you down, they will bruise you, they will scar you, they will bully you, they will manipulate you… And they will always get away with it. And long, long after they stop inflicting the pain, you will pour the poison that fuelled it into your own thoughts without any input from them.

I guess I’m trying to bridge the gap between me and my mother. I feel she should understand me in ways she currently seems incapable of because she can’t see past her own frustration and judgement and… She needs to understand the way I am and why. My family need to know what they do to me, but for the sake of us all I couldn’t mention the specific things that have been done. The past is the past and onwards we move. Examples wouldn’t be believed anyway, like I said, she lives in denial, and who am I to take her from it’s peaceful, sandy shores?

I didn’t know how to show her, how to make her see. And I didn’t know how to keep her heart whole but I know I break it every day. I explained that in the letter. I explained that my family sometimes make me feel like they’d be better off if I was dead, but that I know they’d hate me for running off with the grim reaper and death, and that if I stay of if I run from existing, either way all I can ever do is hurt them. It’s how I feel. This is all just how I feel. My family are nice people. I’m just a bit of a dick, as you know.

Anyway, tonight it became apparent to me that I could never walk 1,000 miles (I would literally fall down, but not at somebody’s door like in the song by The Proclaimers, instead after about 2km), but I could write 5,000 words. And I did that. Because it was an equally big step and an equally long and difficult journey for me.

I said I let it all out; however, the scary thing is, I was just emptying the overflow. There is so much more I can never let out. Bigger stuff. Stuff that matters. Stuff that broke me. Stuff only the people involved know. It would do too much damage, cause too many problems, break too many hearts. So I will let it tear me apart and I will bury it and hope the past fades to nothing. There are also so many feelings around the severity of my health recently that my healthy family would never understand. The crushing weight of everybody’s expectation, my worries that university is going to be as unsupportive as they were last year (although for once everything is so bad all at once that university doesn’t matter right now). I miss being at uni. I miss London and independence and adult conversation and intellectual stimulation and I want to go home. But I know I will isolate myself in this frame of mind and that makes everything worse, and I’m in a room alone not sharing a flat and nobody will even notice if I collapse there and I could just die and nobody would know for days (this one is a stupid teeny tiny illogical worry but hey let’s throw it in while I’m emptying the overflow tank of thoughts).

I am filled with dread and I don’t know what about. There isn’t one aspect of the future responsible. It’s all of it. All of it.

“Physically, mentally, emotionally – it seems like every part of me is broken in one way or another” – Patrick Carmann, Skeleton Creek

No way but through. 

Forgive how pathetic this post was, this is just my only place to vent. Oh wow it’s now August. And also suddenly 4am. No point sleeping now, I guess. Can’t bring myself to re-read this. Sorry it is so long and sorry for the mistakes it is probably filled with. 


The Day I Needed And The Things I Didn’t

Today was heaven. It was also stressful. It was also brilliant. It was also full of guilt and shame and salty river water that very nearly wasn’t the only salt water on my skin (tears people, I’m talking about tears!)

I’ve always been sort of intrigued but also highly alarmed at the effect that people can have on each other. For example today, people made my day and others took the wind out of my sails a little bit. In the little collection of posts I’m writing (called “A Long Time Coming”) I also kind of realised the effect people can have on each other long-term. It’s weird. And it frustrates me that I let so many people make me feel so many things with so much ease. I’m often told that I’m too nice. I really am not. I’m in fact rather pathetic and lost and confused and I put everyone before myself because that feels right and I wish more people would put others first. But anyway. After treating myself for head-lice (which involved combing through my hair with an unused toothbrush and a thoroughly cleaned de-shedding tool for dogs because I couldn’t find the nit comb that came with the treatment and I was paranoid enough about being around two people who had head-lice to stoop to new lows)  even though I had checked multiple times and not found a single bug, here is how my weird day went (warning, this is the kind of post where I ramble on to try and figure out my thoughts and forget people will read it, so I apologise if it is confusing or dull or any other form of unpleasant):

“I know you’re going to shoot me, but you wouldn’t accept any money for the petrol or the food, so I bought you these to say thank you for driving us back.”

I handed my fellow third wheel’s dad the beers I bought him to thank him for driving me home from hospital in Norfolk the other week. He treated me like I was his own, he reassured me constantly saying it was no trouble and couldn’t be helped and wasn’t my fault. He was calm the entire time, even when he was pushing me in a wheelchair into another hospital and sat next to me in A&E while my fellow third wheel went off to get stuff. It was weird being sat in the back of the car on a mini road trip, with someone kind enough to make you feel almost part of their family.

“I am going to shoot you.”

He took the beers from me and jokingly said he was going to react in the extreme way I had made us both laugh by suggesting, a smile on his face. And then he hugged me (which apparently is rare for him, so I was told by my fellow third wheel that I should feel honoured), with the beers in between us, and he said,

“Thank you.”

I hugged my fellow third wheel hello. My dad and I don’t hug, he’s not that kind of guy with me – only with my little brother, who he used to always cuddle up on the sofa with (he has a clear, clear favourite. My little brother is everything he ever wanted, and I guess I just came along with my mum as part of the package. I gave up trying to please him a long time ago, which annoys everyone, but keeps me happy because it is a goal I eventually learned that I would never achieve no matter how hard I tried).

The four of us went and ate full english breakfasts while we watched the river and waited for the wind to fill in. While my dad was at the bar, I was left sat with our guests,

“It’s so nice to see you walking and so much more well!” My fellow third wheel’s dad said out of the blue. I remembered the state I had been in the last time he saw me – emotionally and physically. A lot of people have been telling me I look so, so much better lately, but he saw me when I looked (a lot better than I admitted but still) pretty awful. The difference in me must have been a lot more dramatic to him. It was nice to meet him properly, under less crappy circumstances, when I wasn’t half asleep and wearing my pyjamas.

After the most delicious breakfast, we walked down the pontoon – a slither of artificial land poking out onto the river (already far enough onto the water to feel like heaven) – and then we got on the club-run boat (almost like a taxi service) that ferries people to and from the moorings to which their boats are tied up. 38 feet of pure heaven was waiting for us. I climbed aboard the boat that I refer to as The BeastOld FaithfulOld Beast. The parents were getting along really well, and my fellow third wheel had instructed his dad not to bring up my health or stuff, which all three of us were in agreement of, because my dad doesn’t understand it and he always makes me feel highly responsible and ashamed about the way things are…

Awkwardly I was told to take the helm, I guess my dad wanted somebody who was used to the boat and knew how to handle the thing. The wind filled in a little and off we went, into THE BUSIEST RIVER I HAVE EVER SEEN. There were so. Many. Boats. It was a Saturday and the weather was nice and the world and his wife had turned out in their boats and jet skis and dinghies. There were races going on (multiple – they overtook us and suddenly we were sailing in the middle of their races and some young cocky sailor started shouting at my dad, but his older, more experienced crew remained silent because they knew he was in the wrong). There were areas of shallow water, and times when I had to turn on the engine to allow us to let the wind out of the sails so we could avoid racing boats. My dad wouldn’t let anyone else take the helm. I was left to do it. He told me what to do even though I knew what to do and most of the time was in the process of doing what he instructed. He criticised me constantly which made me stop what I was doing and screw up, which made him really frustrated and snappy. I felt like crap. To be honest, I wanted to cry. But eventually he admitted that I had done really well. Too late. By this stage I needed to pee and I was so embarrassed that I wanted to be away from the helm. So after a couple of hours we finally got to a point where there was open, deep water. We took down a sail and turned on the engine so we were motoring, and my fellow third wheel took the helm.

Processed with MOLDIV
A photo of when I was on the river last week. The old beast isn’t sailing in this picture (we’re running on the engine) but I was too preoccupied in the stress of avoiding multiple boats at a time all from different directions over and over and over again to get any pictures today while we were actually sailing.

I went to the front of the boat, right to the front, like I used to when I was a kid. The waves are felt twice as much there and the motion is amplified significantly in comparison to that in the cockpit. I hung my legs over the edge and let them hang like I used to when I was about 10, and the boat slammed down into the waves generated by a passing speedboat. Spray flew up and soaked my legs and invaded my shoes and I didn’t care. I loved it. Everything felt ok because right there was my escape. I took my shoes off and clambered around the deck barefoot (carefully because there isn’t really that much of a place to walk). I stood where I had been sitting, leaning forward against the furled sail, the wind rushing past me, almost through me, taking whatever emotion had built up away with it. I closed my eyes and not a single thought filled my mind. I was just there. I was just being. I was so content it was unreal. I stayed there for quite a while, because I didn’t want to go back to the others. My fellow third wheel and I exchanged a series of looks at each other.

Eventually I went back because we got the genoa (the sail I had been leaning against) back out. We went back onto dry land and sat in the sun for about an hour I guess just talking and drinking ice cold drinks (there was a labrador-german shepherd cross puppy and it made my heart melt a thousand times over… And my fellow third wheel also felt all the feels at how CUTE it was) . My fellow third wheel plans to come round mine quite a lot to see my dog and has invited my dig and I to stay with him when he has his family home to himself for a week. Sounds awesome to be fair, I’m pretty tired of this house.

I got home and watched my little brother eat food that I had bought for myself, because my parents don’t like me eating all of theirs. I told him to stop, but he’d already ploughed through quite a lot over the course of the day and that was it then, I just wanted my own space back and to be able to leave my own things somewhere without someone using them or eating them or taking them. It’s starting to make me super tense all the time and really stressed, I feel like there isn’t room to be me or anything that is actually safe or mine. I know it is ridiculous but emotions often are.

I messaged my fellow third wheel a lot. We chatted away about random stuff and it totally chilled me out. I decided I need a new focus, so I’m going to try and throw myself into revision for my August exams (which I probably should already have started but hey, my life’s been a bit hectic recently in ways I didn’t even mention here and I’m pathetic enough to have let that distract me). I set up the store for my t-shirt business that I’m hoping to start. I designed the logo (poorly, because I CANNOT use photoshop) and created a banner for the top of the web page. I set everything up… And then ended up in ICU and my vision got all screwed and I still need to set up the graphics tablet to draw the designs and just… It all feels so daunting now, but I’d like to do it because I’d like to be able to fund a service dog and my accommodation for the next year is so expensive that there’s no way I can afford it unless I find another pot of money to contribute towards it – I have no other option than to pretty much financially break my family because I wasn’t left with time to find a cheaper alternative, and that completely sucks, because I don’t have the kind of money to be paying such huge amounts of money for private halls over the road from my uni, which is EXACTLY WHY I STARTED TRYING TO FIND A PLACE TO LIVE MONTHS BEFORE I HAD TO. Wow, I am super annoyed about this apparently. Only just figured that one out. How… How did I start talking about this?

Oh yeah, I was saying what I plan to do to occupy my brain in place of the downward spiral of self hatred I am teetering at the top of (I’ve learned to recognise the impeding… there aren’t even words for the empty destructive emotion that overwhelms me… And I plan to do everything I can to try and stop it, and to distract myself from the terror of all of next week’s hospital appointments, which I am dreading with every inch of my being). I also plan to finish the novels I’ve started or have ideas for – not all of them, but at least one, just so I can say that I did. And I’d also like to complete the random little collection of writing I’ve been working on (of which a lot was lost because technology can be a poop).

This evening I also gave up on the lovebird situation. They are both happy and now capable of telling each other how they feel, so have apparently had many deep and meaningful conversations today. Something had been bothering one of them a lot (among many other things) which I helped the pair of them find a compromise too. But guilt is making that individual go against that compromise even though the other lovebird now understands and supports that decision. That I don’t mind, it is their own decision to make. But I got the whole “don’t kill me” thing and I was like… On the surface I am the most chill person ever, what a ridiculous thing to say, as if I’d be angry over you living your own life and doing what you need to do? The thing is, if the decision is regretted, I will have to deal with it, and I won’t say no because I’d do anything to keep my friends as happy as they can be, no matter how badly I get hurt in the process. It’s so much stress and my fellow third wheel keeps telling me to leave it but I can’t. They ask for help and I can’t say no to that. I know what it’s like when you need somebody to be there and nobody is, and no friend of mine is ever going through that while I’m alive and kicking.

Basically I’ve just had a pathetic day of being pathetic. I don’t know why. We got back at 6pm and I just fell asleep. I couldn’t wake up. I felt drugged. I overdid it. But I needed that boat and it was worth it. There’s something about having an entire boat in your hands and the power of the wind at your fingertips concentrated through a sail. There were tonnes of boat below my feet and I controlled how far it tipped over and how fast it went and my dad could shout and say whatever he wanted but at the end of the day I was the one in control. Me. I don’t get to control a lot of stuff, especially not many elements of my life. Everywhere else at the minute I feel so powerless, so helpless and useless and pathetic. With the wheel of that boat in my hands I feel… None of those things. I feel content and ok and like I can do something and I live for those moments. I live for what boats give me, and I’d forgotten quite how amazing they are.

My fellow third wheel wants to get back into sailing so much more, and has said that he will keep me company if I want to go out on the boat but not just alone with my dad. Everything works out in the end. I have the best friends.

Please excuse my patheticness. It’s never the huge great big issues that get to me, it’s the little stuff that is juuuuust enough to push me over the edge.

No way but through though, I guess.

When There Are No People, There Is No Pain

“Four legs good, two legs bad” – George Orwell, Animal Farm

I took my pillow and looked at the bed I haven’t slept in since returning to this house – the bed that will be going soon to make way for a spare one. My bed. I refused to sleep anywhere but there and nobody saw the point in arguing with me when they saw how worked up I was. There was stuff piled all over it, but I managed to clear the top third of the bed, clambered over piles and piles of my childhood to shut one of the curtains, and curled up under a blanket that has been washed so many times it is barely soft any more. Finally able to share a room with my dog again, and careful not to shut the door (because if I do, it can’t be opened and I get trapped in the room for ages) I put my headphones over my ears, turned the volume up so loudly that I couldn’t even hear my own thoughts, and relaxed into a little bit of punk rock (my music taste is extremely varied and changes like the wind depending on my mood, but last night my brain decided only punk rock would do) as the drum beat drowned out that of my heart.

I’d turned around every mirror. I didn’t want to look at myself, I couldn’t stand the sight of myself, especially as I kept crying (which always makes me want to slap myself because crying makes me pretty furious at myself). With the presence of my dog in the room, I cancelled my half-hourly alarms, confident in the knowledge that he would wake me up if the grim reaper came knocking (and at that point not caring too much if he didn’t). Emotionally and physically I was exhausted. I hadn’t been sleeping properly for a long time. Not only did I manage to sleep for more than a couple of hours.. I slept right round until midday (I woke up a couple of times but managed to drift right back off). Because I stayed in bed, my dog did too (he usually likes to get up at half seven, but didn’t wake me up today, and decided to babysit me instead). He tried to get as close to me as he possibly could, which meant he was half under my bed when I woke up, and I’ve missed that. It made me smile. I’d woken briefly a couple of hours before to hear him running back upstairs, and watched as he gently crept into the room, curled up beside me, and just watched me breathe. When he noticed I was awake a few hours later, he flew at me, tail wagging so hard his entire body swayed with it.

I was glad that there was nobody else in the house. I am still unwilling to face the company of humans. Dogs and death are pretty much the only companions I am willing to consider entertaining, and the only ones who have yet to let me down. When I was in my mid-teens, I decided I would never trust, believe, or put myself in a position where I had to depend on humans ever again (after being severely let down by people who left me to get beaten every day, and simply stood back and watched, leaving me to the mercy of a situation they had the power to prevent). I broke my rule for a doctor, who was ok at first, until he very nearly killed me, acted unprofessionally, caused huge rumbles in the jungle of our family by attempting to intervene in the dynamics of our familial relationships, and whose face I frequently see in my nightmares (I still get an adrenaline rush at the sound of the guy’s name, and the things he did contributed the the development of my PTSD). He thought he was helping, people usually do. Instead, he killed the person I was. As my physical health deteriorated under his watch, and his actions occasionally made things worse because he didn’t know how to handle such a rare and complex case (and refused to ask for help initially, until the damage was done, insisting that he was helping me and could manage despite the frequency with which the grim reaper almost took me), I realised that help is far more dangerous than circumstance could ever be. After that I couldn’t trust anybody. I couldn’t even love (after all, isn’t that the sincerest form of trust? Relationships with my family members were strained beyond breaking by my physical health. They resented me for everything they were going through, and at times I was persuaded by nurses to resent them back). No exceptions. It hurt, and it was a lonely way to live, and I felt so lost and alone… But it was safe. A thousand times bitten, two thousand times shy.

“Where there are no expectations, there is no disappointment.” – Charles Krauthammer

As a result, I now instinctively read between lines and fill in the empty space with my worst fears. I still question everyone and everything because I’ve been let down so badly so many times before. Trust has torn me apart – it is, in my eyes, the most dangerous weapon. And I was doing very well at withholding that trust from anyone. For years, in fact. Until my uni parents came along and worked persistently and ridiculously hard until they tamed the wild animal of my expectation/ fear, and proved to my terrified brain that they could be trusted. Words weren’t enough to assure me, but their unwavering presence was. Over and over again they said that I could count on their support, and I always, always doubted them. Until I fell for it. And before I was even aware I was willing to trust them, they had taken it all. I was terrified of that, but it felt good to finally be able to trust, and I still have no idea how to take it back from them. I tried to extend it beyond them, because I thought maybe I was ready, but nobody else was as patient as they had been and I quickly withdrew the olive branches I pushed out towards people. The persistence of my uni parents didn’t last. I shouldn’t have let them care, but after a couple of months they quite rightly saw some level of sense moved on with their lives… Just as my future became particularly bleak and I needed people to be there more than ever.

I learned, slowly, to support myself; although, the stability I offered was nothing near to that which companionship can provide. I began to look forward to things I couldn’t be certain of. I doubted and doubted but soon I had to allow myself to get lost in my denial hope in order to avoid falling apart. And that was where I was stupid, where I went wrong. Because everybody is the same. Everybody lets you down; some unintentionally, some out of pure selfishness, some because they genuinely have no idea how much their actions mean to you or how much you have come to depend on them. Some… Out of the same fear that you are living through but cannot escape because you are stuck being a part of your body.

But either way, when I was reminded of this last night, I was incredibly angry. Just for a moment (ok so quite a few consecutive moments), I was sick of everything. I considered buying a train ticket and waiting for my next brush with the grim reaper in a less stressful environment. Instead, I went into the soon-to-be-spare room (which is currently still mine), had a small cry, and phoned my grandparents. My mum was out, or I wouldn’t have called my grandparents, because she doesn’t like to drag them into the mess of me I think… However, knowing she would disapprove of me contacting them but wasn’t actually there to stop me, and desperate to feel less alone… I just called them, spoke to each of them to ask how they were, and let conversation with people who misunderstand my health stuff a lot but who still manage to overlook it and have normal conversation with me… Take me away instead. We talked about them, about uni, briefly about the flatmate situation, laughed about my mum’s shoes and her day out (her workmates all got a mini bus to Royal Ascot)… About how difficult my grandma found it to have my mum falling apart and also know of the impact it was having on me, but not be allowed to get involved (an issue I had clearly bypassed)… About how scared people are of my health and how worried she’s been to have me to stay (I pointed out that I’m 20 and had saved my own life more times than she could count, and she relaxed quite a lot when that sunk in)…  Half an hour later, I hung up the phone (having been asked to leave downstairs so that my little brother could play on his games console, which led to me feeling totally out of place in this house, and was what made me want to phone my grandparents, because they always like to hear from me and it make me feel less out of place in the world) stared at my room, and suddenly wanted to run. From the planet. From my family. From this house.

“If I stay there will be trouble, if I go there will be double.” – The Clash, Should I Stay or Should I Go?

Instead, I let gravity pull me from where I was perched on the edge of the bed, and fell onto the floor beside my dog. We hugged until we both fell asleep.

Later on, I spoke to the two friends I refer to as My Fellow Banana and My Fellow Fish (TRULY AWESOME, thank you both so much), but I don’t think anyone really understands how much it hurt to be let down again. I don’t care who did it or why it happened or that I now probably won’t have a flatmate and therefore have no idea where I’m going to live and as a result my second year of university may be impossible (ok, so I moderately care about this, and will freak out about the true gravity of the situation after I get over the whole reminder that humanity is a whole sewage plant of poop). I have been let down yet again and I don’t know how to get up this time. It’s a teeny tiny thing, but it seems to be the grain of sand that tipped the scales.

I have spent the entire day (which isn’t a bad day because HELLO HOW LUCKY AM I in so many ways? It is just slightly less great than other recent ones) curled up with my dog, who seems to be aware of my mood, and wants to be hugged constantly, has insisted on bringing me all his favourite toys, and refuses to be separated from me even for a second (which right now feels awesome). Pink Floyd and The Clash have kept us company all day (if you don’t know those two bands where have you even been? Their music is awesome and you’ve probably heard it but not realised it and seriously though where have you been?). When my family get home, I will retreat to my room again. We’re all less broken under that circumstance.

Great. Too slow. Dad and brother are home. Straight in the front door, and immediately I’m in trouble. Stomping around. Slamming doors. My heart just hit the floor. And then in comes the little brother a few seconds later, wishing I wasn’t home so that he could just walk in and play his video game. Wishing I wasn’t here… Wouldn’t that be nice?

“I’ve got a strong urge to fly. But I got nowhere to fly to” – Pink Floyd, Nobody Home