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. 

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I Don’t Have To Any More

Some things leave us but never stay away – the rain in London (the kind where the clouds are so thick that it’s dark in the daytime and you can’t see the other side of the road because the rain is so heavy), and the impact that my family can have on my mood. Yesterday, both returned. I wasn’t too fussed about the return of the rain, but it wasn’t the only water to have run down my cheeks by the end of the day. It also wasn’t the only water to wash things away.

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Various pictures taken around London in the rain throughout my day. From Whitechapel (bottom right) to Sidcup (bottom right) where the umbrella looked kind of like a weird flower.

I ended up staying with Auntie Godmother and family last night, which was, as usual, amazing. It was calm and relaxed and Uncle [her husband] also chatted away with me (which still weirds me out because I don’t talk to the man I call Dad). I only woke up once during the night, which is UNHEARD OF (I usually wake at least every half hour). I hugged their dog, who kept jumping up onto my lap, and it was just good. Last minute and unexpected for all of us, but good. I walked to the station with Auntie Godmother late morning (she was going that way anyway) and got the train home. Or… Almost home, because the tube network had ground to a halt due to signalling failures shutting the exact section of track that I needed in order to get home. I returned home (eventually, after getting the bus) to find my mum and little brother sat by reception in my accommodation waiting for me. And that was where it all went wrong.

It was great to see them. In the two weeks since I last saw him, my little brother is now taller than me! They had brought with them a shelving unit and built that together while I showered. But everything I did was wrong. My mum shouted and snapped every time I opened my mouth. I  could do no right, and it felt like being back in their house. At first I let it run off my skin like water, until we got in the car and I made a conscious effort in the way I spoke not to upset her… and it wasn’t enough. I really, really tried, I said something simple and reasonable. And she snapped again, going off on one. I instinctively pressed myself against the car door and just looked away from her, and at my retreat she stopped. I had no idea what I’d done wrong or how it was wrong. I tried to respond and found my voice was suddenly breaking because for some pathetic reason there were tears in my eyes. I felt like the scum of the earth. I felt like a disappointment and a complete and utter dick. I felt awful. I pressed the busted bone of my foot into the floor of the car and let the pain shoot through me. I honestly just fell apart inside, and I’d been away from that feeling. I’d escaped it. She usually gets cross when I’m upset, but this time she “apologised” with the kind of apology that starts with I’m sorry and swiftly progresses to but followed by a load of attacks and (not-so-subtle) digs about how awful I am as a person basically. I considered opening the door and walking back home. I felt just like I did when I lived with them. And damn it, I’m crying even writing this. And I. Don’t. Cry.

The dust settled, and, still with attitude, she said they’d take me back to my place if I wanted. My little brother had been really looking forward to seeing him, and I knew that accepting this offer would only make things worse with my mum, so I stayed in the car and we drove for way longer than we needed to in order to get to Stratford (because there was a football game on at West Ham’s home ground – the 2012 Olympic Stadium – so there were a load of road closures). We got out of the car after eventually parking, and my mum acted like nothing had happened. She linked arms with me and tried to kiss me but I couldn’t. I wasn’t trying to be mean, my brain was just baffled and going at a million miles an hour and I just felt empty inside. I wasn’t capable of any form of affection. I just wanted to burrow inside myself and tear myself apart until there was nothing left of me to hurt the world. I pulled away, and my little brother and I walked around tangled in a hug instead.

We ate lunch, and even then I was somehow managing to screw up. (This isn’t a criticism of my mother, it’s a criticism of myself. I don’t even know how I screw up. I don’t mean to. I try so, so hard. And it isn’t enough. I am never enough and I never will be enough). My brother was all what is wrong with her?! and honestly, I think the answer is very simple, because it’s exactly the same thing that is always wrong with my “dad” – me. I was there. I was ruining their nice time out together and I didn’t even mean to. My bother said I wasn’t doing anything, my mum said maybe it was because she was hungry. But it didn’t matter, the seed had already grown roots so deep it couldn’t be pulled out, and it was ruining the structural integrity of my self esteem. The subject of Narcissist Nephew came up. My mum said he’s getting better and he will learn, but is so ignorant of the way my brother and I feel about it all and lives in a bubble of denial as she does with most big issues I try to raise with her. With me there, my brother had the confidence to sort of tell he how he felt. I prompted him to admit that he wasn’t happy. And somehow this led to me looking right at her and saying,

“That house is not my home.”

And I went on a little. I explained why. I said I didn’t feel like I fit and as usual she told me it was ridiculous, but away from her home and in my home area, I was bold enough to continue. I told her I wouldn’t go to that house again, I wouldn’t stay the night, I didn’t want to be there, and I couldn’t handle the way it made me feel. She came back at me saying that when I spoke to her on the phone my dad couldn’t even stay in the room (I’d heard him make his big dramatic show and sigh as he stomped out) and I don’t want to see him face to face. I told her his family didn’t feel like mine – I don’t share their blood and they really make me feel it. I feel like an outsider, and I do not feel like a member of their family so I want my old surname back – the one I was given when I was born, the one before my mother met and married the man whose surname I have now. The only way for me to be happy was to stop trying and stop wanting to be a part of that – to stop longing to have the kind of relationship with my “dad” that he has with his own flesh and blood, and to stop longing for his family to be with me like they are with each other. I let go. I don’t want to see any of them, because it hurts, it makes me feel so inadequate, so much… Less.

I realised that I don’t have to do that any more.

My mum said that not going “home” was immature, but I am an adult, and I am choosing not to put myself into a situation that I know will cause me a lot of distress and be extremely unpleasant. I am choosing not to bother them or burden them with my “pure evil” and protect myself. Because I don’t have to endure it. Not any more. I have a home. I have a separate life and now I have something to contrast my Kent life against I realise that I don’t want to go back to it. Never. It’s kind of sad, for family life to be over. All I want is family, all I want is to feel like I belong (and that’s why I run home to Auntie Godmother’s, and why I went there on Friday night). I let it all out and she argued but eventually I think, it hit home. She told me off for making her choose and said it wasn’t fair. I told her I wasn’t asking her to do that at all, I’d chosen for her, and that it is now very simple and very easy – that isn’t my home and I won’t be staying there, especially when my nephew is there to further make me feel like an outsider – I always felt second best behind my bother, but my dad’s family worships my nephew and I’ve never felt love like that from them. I don’t need to sit face to face at a dinner table with a living reminder of that who also happens to be rude and sarcastic and talk down at me like he’s my superior. I just don’t have to any more.

We went shopping together after a lunch where we ended up not being charged for any of our food because they messed up so badly and had to re-do our order after letting our food go cold and disgusting before it was served. I bought a load of men’s jumpers – thick, warm, oversized and baggy (not thin, fitted, fashionable and so short they reveal half of your stomach like ALL the women’s jumpers I found which fitted at least one of these categories and were clearly not designed to be practical). My taste in clothes changes a lot, but I usually live in skinny jeans (specifically my favourite black pair) and baggy hoodies or thick wool jumpers. With the level of swelling that I keep getting in my abdomen, the lack of jumpers in my wardrobe (I forgot to bring most of them as it was hot when uni started) and the fact that it is now cold enough that I’ve started wearing my coat again… I decided it was time to invest in some comfort. I swing between comfortable style, and comfort over style. I was feeling low. I was also feeling very unwell (for a very long time after I got in I felt like I was going to pass out and had an awful headache). I wanted a big warm jumper, and so I followed my brother and mum down to the men’s floor of a VERY cheap and popular high-street chain, and bought myself jumpers from the men’s section. There was a fight between a guy and some woman who had just floored his girlfriend and pulled her hair… Which was… Typical Stratford… After that we went and bought my (not so) little brother his first razor and then just got out of the chaos of that shopping centre.

My mum drove me home. She pulled over at the side of the road and told me to give her a kiss. I made up some excuse about my lips being dry or whatever (I don’t even know, there just was no feeling inside of me, and my brain was all NOPE). I waited for her to shout but she didn’t, she looked at me all disappointed and sighed and said, you’re really anti-me, aren’t you? and then something about having apologised for upsetting me, as if that took away the feelings she had triggered, as if that took away anything at all. We sort of half hugged, and I turned to say goodbye to my brother. He insisted on getting out of the car and giving me a proper hug (rare for him). I walked away, and honestly am not fussed about when a meeting like that ever happens again. I don’t have to put myself into situations where I feel like that any more, and contrary to being immature, I think that saying no and avoiding things like that is… Not only sensible, but necessary. Because I just cried for about half an hour while trying to write this down, and I usually don’t cry easily at all (hospitals/ doctors and my family are the only things that easily make me cry).

If you’ve read this blog for a while they you’ll know what I did, because you’ll know what I do. You’ll know where I end up, and when I end up there – the Thames at night. There is something about standing there watching the black water rush past that just takes all the bad away. It leaves me feeling lighter, and no matter how many times I walk along its banks and see London’s landmarks at night, they never fail to make me stop and stare. So HK Uni Friend and I got on the tube to Westminster and went for a late night wander (we crossed Westminster Bridge to get to Southbank, walked along to Golden Jubilee Bridge, crossed over and went to Trafalgar Square, where my heart decided to put a stop to our wandering).

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“Another day the city saved us | It gave your heart a place to hide” – Goo Goo Dolls, Lucky One.        Top left: The houses of parliament viewed from Westminster Bridge. Top Right: Me stood on Southbank looking over at the houses of parliament. Bottom Left: View from the Golden Jubilee Bridge (I think that’s what it’s called anyway). Bottom right: Trafalgar square, view of a fountain looking up at Nelson’s column behind it.

Auntie Godmother and co. are having lunch at my parents’ house right now. My cousin messed me pleading with me to go, and then my mum called and said I had time to change my mind. I told both of them, gently, that I wouldn’t be going, which is so sad because my dog is in that house and I miss him so badly and want to see him so much… But he’s in that house. They are between me and him. I want to see him so badly but there are people in that house I just don’t need and cannot face seeing, and I know they will not miss me. I look at the way my dad looks at me and he doesn’t even need to speak. He doesn’t need to say a word any more, doesn’t need to shout (although when he does talk to me that’s all he ever does) an weirdly, him blanking me bothers me more than him shouting. I finally realised I don’t have to face that any more, and nobody can make me. I feel like such a bad dog owner… I feel like such a bad person, right now. Excuse my patheticness. Thanks for reading whatever this even was.

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I just got sent this by my cousin… 

No way but through.

 

Asdfghjkl

(I wrote this yesterday but for some reason after I hit publish it got lost in a void)

There is a lot of stuff I should probably be doing right now.

For example, I should probably be revising for the exam that I have to sit tomorrow morning, rather than being so stupidly excited about going back to London and being back at uni for a couple of hours. I should probably be applying for next year’s student finance, instead of writing this post just so I don’t go a day without posting anything. I should probably be in contact with a doctor or a nurse to inform them that I don’t want to spend all of two consecutive days in a London hospital 2 days after dragging myself to London for an appointment on the 8th, and the day before my next exam on the 12th (I can’t face spending all day in hospital for two consecutive days, and all the travel, and the environment, and the staff that I don’t want to have my life in their hands. It was stressing me out a lot, so my brain was all “why don’t we just cancel?” And then I realised that was a great idea, and instantly relaxed). Plus, I also have two hospital appointments in London again the next week on the 16th and 17th with yet more consultants, and I am not in the right state of mind at all to put myself in hospitals that frequently (I’ve decided that before I go back to Sidcup on the 16th I might stop by the aquatics centre in Stratford and go for a swim in the Olympic pool as a reward to myself).

I should probably be arranging how on earth I’m going to get to my exam tomorrow, rather than deciding that it doesn’t matter because I can’t remember how to chemistry and I hate maths so I’m going to fail anyway. I should probably be stressing  (with the rest of my exams I was getting a maximum of 20 minutes of sleep a night… For the whole time, which ended up outraging my already grumpy body/ heart/ kidneys, and putting me in a coronary care unit – I literally nearly killed myself for those exams) and yet I feel dead inside, I can’t bring myself to care; there is simply a crushing dread about returning to uni staff who I feel I create a lot of hassle for, and the roaring of everything else I am trying to overcome.

I revised a little yesterday. I hate maths. It bores me. And yet I loved it. I loved metal stimulation. It quenched my thirst for learning and I was happy, sat there making notes on something I dislike A LOT. I tried to revise today, but my mind wasn’t there. My mind isn’t there. My mind is everywhere else. It is being torn apart. I am being torn apart, and everybody thinks I’m fine. I try to talk to my mum and it either ends with her venting all her frustration at me, or with me feeling completely pathetic because she cannot understand what I am trying to say.

I went shopping with my nephew today. He wanted some weights for “his” room. We had a pretty nice time, we wandered really slowly round the shops as I limped on my currently wrecked legs. I ended up setting up my first ever direct debit. It wasn’t for me, it was for my nephew’s new phone contract. He is only 16 and doesn’t have a direct debit, and he needed an adult and a debit card to sign the contract, which is now in my name, because I’m an awesome aunt like that (even though I’m only 4 years older than him). I paused to have my eyes tested. The optician knew my uni and when he found out what course I was studying and what area of London I was from we briefly became distracted. My vision is pretty screwed, but I knew that anyway. I bought a few new books to read (I have boxes and bags of books I’ve bought both recently and over the past year. I have a huge weakness for books, always used to spend my pocket money on books when I was a young child. Now though, I think I have a bit of a problem.) and ANOTHER colouring book because it was called The Magical City and it has so many areas and landmarks of London in it that I know and recognise, which my heart couldn’t resist because I miss being in London SO MUCH (so badly wish I had somewhere to move into now instead of in September).

There were incidents. Other family members made me feel like crap. This time I was totally blanked in a video-chat between my nephew and my big sister (his mum), and my little brother was called to join it and spoken to over me. I was just totally blanked, after doing something pretty nice for her son, and I didn’t want a thanks, but a “Hi” might have been nice. I’m frustratingly, stupidly fragile at the moment. I think I’m a little lost, drifting, looking for the shore. And terrified that I’m going to lose my foot to this infection, because that’s how things like to go in people with diabetes or poor immunity or rubbish circulation and it isn’t at all like I have any of those things… Oh wait, I have all three…

I cooked dinner for my 13 year old brother and my nephew (and myself). I cleared up the entire kitchen. I unloaded the dishwasher to prevent world war five. It won’t be enough. I will have screwed up somehow because my parents always seem to find a flaw in my best efforts. With this in mind, I gave up on my entire family and sat down to write this blog post. I probably should have revised. I’m going to go and do that (who am I kidding, I’m clearly going to resume the colouring that I paused to write this post – I’m right handed but my right hand is messed up, so my left hand – which I taught to sketch almost as well as my right, and learned to write with – needs reminding how to hold a pen and write before tomorrow so this is technically actually preparing for my exam).

I will get over myself soon.

Excuse my whining and patheticness. But I want to portray things honestly. Sometimes I’m strong in the face of everything I’m dealing with, until I’m strong for too long, and then I end up this empty, lost, numb yet infuriatingly disheartened and emotional thing. On TV you see brave people. And in books. Serious illnesses are romanticised. People act so admirably. For a long time I felt so ashamed that I occasionally was bothered because I thought that nobody else was, and I guess I wrote this to show that if you think you’re being pathetic and you feel like you’re the only one who ever had a bit of a wobble… You aren’t. You’re being real. It’s allowed and inevitable, even if it isn’t expected.

Putty adapts and moulds and absorbs impact, but putty isn’t strong. Metal is strong, but put too much pressure on a brittle metal and it will break. Strength is not protection against breaking. Strength is the ability to break and remain with what little is left. Strength is the ability carry so much weight on your own shoulders that you shatter, rather than rolling over and admitting defeat. I’m telling myself this, but that’s not what society seems to expect. I feel like society expects me to be completely ok with my health and everything, to do something great in light of it and make a mark on the world. Because that is all society sees of the sick – the outstanding, the amazing, the people that leave me in awe and put the rest of us to shame; not nearly as often do we show the weakness, the emotion that we all feel but hide. Maybe instead of writing this post, I should be trying to show the highs and the lows experienced by people with health hiccups (I mean, I wrote a novel that did that but I will NEVER publish it). The mental impact of physical illness has at times to me felt worse than the illness itself. They do, inevitably, come hand in hand (I will post about this at some point, now is not that some point).

What even is this post?

I can’t even think right now, my brain is spitting out the human equivalent of “Asdfghjkl” – I cannot compute. Excuse me.

Anyway, yes, colouring revision.

No way but through.

(And my computer didn’t post this when I hit “publish” yesterday, so now my streak of blogging every day since THE FIFTH OF MAY is broken. Damn.)

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.

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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.

Melted Mole Hills In My Mind

I am trying to unscramble my thoughts to formulate some sort of thing worth reading, but it is so hot that all my thoughts seem to have melted together and seeped out of my mind like melting ice cream. Today has been a day of sticky, humid heat, a missed hospital appointment (because I’m a COMPLETE idiot), and… Friction. Family life is difficult to deal with after you’ve lived alone for a year, surrounded by other students and in the freedom of London.

Caution: I need to have a moan. I am going to moan. This post will probably be one great big long pathetic moan that you will find ridiculous and I am sorry for that but I just need to let it out and this blog is the only place I have to think out loud. Sorry. Do me a favour and don’t judge me? We’re all human. We all just feel a bit BLURGH sometimes… In comparison to the mountains in my path these are mere grains of sand now elevated to the status of mole hills, and they’ve all melted together into a confused mess, hence the title. By the time I get to the end of the post, it probably won’t even look like such a mess any more, which is exactly why I blog. But anyway, here it is (there’s a very important thank you at the end).

I like my own space, in the past I have always felt like a second rate human in this house, and I’m not treated like an adult here. I want space to malfunction. I want space to let my health hiccups hiccup without being shouted at because of the frustration and stress this causes to my parents (who do not seem to understand the nature of my health hiccups at all or understand the impact they have on me physically and emotionally… Then again, they don’t know everything, and I can’t stand the idea of trying to tell them). I want space to be unwell and be able to focus on keeping myself whole emotionally and physically alive, rather than worrying about hiding how unwell I am to protect people I care about (but who in the heat of the moment say I am ruining their lives and I am evil because they don’t mean it but they can’t handle the health junk, and don’t seem to pause to think that I can’t either).

I don’t want to have to plaster an obvious but false smile on my face in order to avoid questioning and somehow irritating my parents if I don’t look happy ALL THE TIME. I want to just be me. I want to feel the things I am forced to bury here and let them out and process them before they eat me alive. I want my food to be untouched by anyone else after I plan meals with it, and I don’t want to walk downstairs and find my little brother wearing my t-shirt like I did this morning (he was horrified to find he was wearing a women’s t-shirt, but in his defence it was plain and did actually look very fashionable on him, you couldn’t tell), or have him bring one of my hoodies out to the cinema with us (which I wouldn’t mind if he asked, and was an accident, but I’m touchy about people just taking my stuff no matter what the circumstances).

I don’t mind sharing my stuff when people ask, and if I do share anything with you, or let you share stuff with me (especially food!) it means we are TOTALLY cool. But my stuff is my stuff. Since spending a couple of years living in a hospital when I was younger, and lengthy admissions sometimes for months at a time after that, I realised that the only thing I could always control would be my stuff. Not my body. Not my health or my blood or people’s reactions to me & my health, or who stayed in my life and who walked away, or my actions (because when you’re tied to IVs and living on a children’s ward there are limitations). Just my stuff. On one admission I became kind of obsessive about my stuff, not because it was mine, but because it represented my only control over some aspect of my life. It was the only thing left. I felt almost violated if people moved my things or changed my bed or reorganised the stuff on my table because they thought they were tidying up. I would feel totally out of control and stripped bare, like there was nothing at all left and it was all gone, and I would curl up in the chair and try and fail not to cry, frustrated at myself for being so illogically pathetic. It’s weird. I’ve mostly shaken it off, but my stuff has more than a material value and when I’m already stressed out, that little bit of me re-surfaces BIG-TIME.

Which brings me on to my main thought. I cannot stay in this house for very much longer. My family have been very, very nice and good to me over the past few weeks; there have been no fireworks this time, just the occasional argument. No leaving because I need to get away from the toxicity of a certain person’s behaviour. Nowhere to leave to even if I wanted to. But my patience is wearing thin. I’m tired of being misunderstood (mostly in terms of my health and my severely overestimated physical capability and expectation to do chores when I can hardly HUMAN) and treated the same as my 13 year old brother. Correction – he is the younger child, we are not treated the same (especially by my dad, who has a CLEAR favourite – the kid who shares his blood is the one he obviously adores. I do not even get hugs, and yet they will cuddle up on the sofa together. Used to hurt. Made me feel like crap when I was a child. Used to it now. No longer want any visible displays of affection from him, in fact, they weird me out and I FREAK OUT – we shall leave that one there). My brother gets what he wants, he gets away with far more than I ever did, and he treats me like he is my superior. I don’t argue with him. I get annoyed sometimes. I curl up on my bed and close my eyes and long to go back to London and feel like I’m a bit of poop, and then my dog looks at me like the sun shines out of my buttonhole (this computer is too polite) and I feel all wanted and loved and that’s all anyone ever wants so it’s all good. But today I’d had enough of it. I’ve had enough of living in the shadow of the younger sibling. I’ve had enough of being treated like a child again and being spoken down to like one no matter how many times I try to point out that I am 20 now and have lived alone and fended for myself for a year. I am tired of being told off for not unloading the dishwasher, when nobody else has done it either, and I hardly have the energy to breathe or move and am too dizzy to stand, because “We’ve been at work all day and what have you done?! Nothing! You’ve just laid around, look at you!”

I just want my own space back. I got used to living alone, and yes it was lonely but I feel lonely here too. I got used to eating what and when I wanted and doing things when I wanted and being an adult and sorting my own life out and doing my own shopping without having to label everything and police it. I’m tense here. I’m worried things will go back to how they were and I can’t deal with that now. I don’t trust the illusion that things have changed because everything has a funny way of always, always shifting to how it was. People don’t change. I have given up hoping for it. I don’t believe it will ever happen. My mother seems to. I hope, for everybody’s sake, but mostly hers, that she is right.

This morning I was slow to start. It was too hot to sleep last night. My dog was hot so I had the fan mostly on him, which meant that I laid there sweating and sweating and trying to catch the edge of the artificial breeze until the sun came up, by which point I was so exhausted that I don’t remember falling asleep. Regardless, I woke up stupidly early, and cooked myself a bunch of fish and a fishcake for breakfast. I have no idea why. It’s the third morning that I’ve done this. Weird thing to start the day with but it fills me up. Then I felt guilty. I felt guilty that my body felt slightly better than the day before and both parents were out at work while my brother and I laid around. So, after I’d spent almost an hour trying to brush all of the fur out of my chocolate labrador (I got an entire carrier bag out of him and then gave up. This happens every day. He should be bald because I’ve no idea how he still has any fur!) I took the brush and dragged it through the huge, matted, (once) fluffy rug that lives just off of our kitchen. It took me ages. I got more dog hair out of it than I did from the dog and the effort of dragging the brush against the resistance of its matted fluff made me dizzy. I ended up soaked in my own sweat, and then my mum got in from work and laid on the sofa while I hoovered most of downstairs, including the rug.

I felt like I needed to do it, like I owed it to them. When everything started to go black I instantly regretted everything. I downed two pints of water and went upstairs, eventually crawling the last few metres to the shower, which I put on ice cold (no hot water AT ALL) and, after unblocking the drain (which was GROSS) I leant against the wall under the ice cold stream with my heart hammering away so fast I began to become ever so slightly concerned.

Then in walks my mum, while I am showering, to say “(Little brother) and I are going to see Tarzan, do you want to come with us?” I know her word choice meant nothing, but I felt like I was invading a mother-son plan, like I was an afterthought. I went anyway. It was a great film actually, reminded me of when I was three years old and my mum took me and my child minder’s daughter to see the Disney version but had to leave because we got scared and started sobbing right at the start…

Afterwards we walked behind the cinema, a little closer to the river, and went to a restaurant that only serves dessert, because my little brother wanted to go. My mum used to take him very often but it was the first time I had been with them. She posted a picture of him on social media, eating his strawberries and chocolate on a giant freshly cooked waffle.

Back in heaven again (by a river). 30 degrees was a little warmer than last time I walked this route!

I just felt out of place. I checked my phone and I had two emails from one of my doctors arranging an appointment in one London hospital next Tuesday, just after I will have spent a little while discussing some surgery that I need in another (both right near my uni in Mile End; within walking distance, in fact. I can’t wait to see Mile End again). This appointment will involve two members of one of my healthcare teams seeing me together. Two medical professionals working to help against me (because that’s how previous staff have made it feel). I started to freak out at the thought of it.

My mum kept asking why I wasn’t smiling (which made my brother laugh, because he had the most miserable expression ever and she hadn’t noticed). I kept explaining that I was tired, when in actual fact I just felt drained, empty; I knew I’d overdone it both physically and emotionally, but I couldn’t say that to her. Eventually my relaxed facial muscles gave rise to frustration on her part, and we both snapped at each other a little. I didn’t mean to, but apparently I had a tone. Anyway, I felt like a child, and I got a little frustrated but swallowed my frustration.

Then I felt evil. For making my mum frustrated.

I kind of wrapped myself in this empty feeling and went home, where I cooked myself an entire second dinner, complete with a lemonade ice lolly and then celery and humous. And then I realised I had missed my urology appointment. With the new consultant. Great way to make a first impression. I completely forgot. COMPLETELY forgot. I thought it was on the 22nd for some reason, and I had no idea what today’s date was anyway, so there was no chance I was going to make it. Usually all my appointments are in London and so I get text reminders a couple of days before (which helpfully remind me that me missing an appointment costs the NHS £160).

But you know what? Today an incredible little girl who I’ve never spoken to or communicated with directly, made me smile from an entirely different continent across the pond. Her attitude to life even in the face of her health is incredible, and learning that she has recently been able to go in the water for the first time with her ostomy bag and everything made me so happy I couldn’t stop grinning. When I saw an emailed photo of her smiling from a hospital bed, I was at first (and not for the first time) blown away by how incredible she is (and also how alike we look, because I genuinely thought it was me for a couple of seconds). If you saw the smile I was looking at, you would have smiled too. It’s infectious. And you cannot help but smile with her. She’s in hospital again at the moment, and as requested I have sent her some good juju, but I really hope she’s out of there soon, she deserves to enjoy life a LOT. Honestly, I don’t care who you are, you could learn something from this little girl and I’m not just saying that. We all could

So yes, yes there’s no way but through…

But whoever you are, reading this, have some good juju too, just in case you’re in need of some right now and don’t know who or how to ask.

Oh yeah, also, I HIT 100 FOLLOWS ON THIS BLOG TODAY (actually 101, but still…) I know it is a tiny number compared to most blogs, but it means so much to me and you lot are awesome and I’ve no idea why you follow this blog but hey, you made me smile a lot, so thanks!

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Thank you!

Enough

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But it is too little too late.

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

“Oh my dance is getting slower now,

Cause my years they’re getting older now,

And my eyes, they won’t cry.

My tears have all run dry…


Will you please believe

I’m not the person you see,

I left that body long ago.

I left it way back there.

Will you please believe,

Given all that you see,

I left that body long ago

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