I Wasn’t Ready

I am surrounded by assumptions and expectations that are incorrectly pinned upon me. There is this assumption that I’m able to cope, that I’m ok. There is a huge expectation of me to start catching up on university work and be able to do so. People assume that I’m better and that I’m out of the woods. It’s all so… Far from reality.

On Thursday (after a sleepless night), I went to a hospital appointment where nobody seemed to care about the emotional impacts of my physical health hiccups at all – not even the psychologist who saw me in clinic and decided to join the appointment. I was alive (just, and not thanks to them) and that was enough. It didn’t matter that I had so nearly died. It didn’t matter that I was scared. I tried to talk about how I felt and the silence and expressionless faces told me that it didn’t matter there. The psychologist said it was such a huge deal and a big change to see me engaging with treatment. I found this ironic, seeing as the people sat before me were part of a healthcare team that totally bailed on me in February, refused to try anything else, and basically left me for dead, therefore burning any bridges I would ever build past and present. In my brain the whole appointment was a test that they spectacularly failed. After so long of them not caring, and me not being able to face appointments, I was totally overwhelmed when they just assumed that I was fine with everything and ready to engage now and booked not one, but TWO appointments for next week. I don’t know why I let them just sort of spring this on me. I was so overwhelmed I just went with it. But no. I should probably cancel those. Because they are… Nope. Too much too soon.

I left, feeling smothered and kind of like a caged animal, and I walked past campus but refused to take a shortcut and cut through it. I couldn’t face uni… And yet, I grabbed some food, and went back to my flat, and then headed onto campus for my lab. IT was a mistake. It was too soon. I couldn’t people. I was hugged. People who had no idea I was even in London were happy to see me. It overwhelmed me. WR Uni Friend knew the state I was in but didn’t know what else to try other than normal conversation and that… No. First my voice was deadened and monotonous, and then I just couldn’t talk at all. I withdrew. My mind crumbled, although there was nothing really left to fall apart. I switched off. I was exhausted from being up all night. At one point the module lead for that lab walked through (the lecturer I’d emailed a few weeks ago from hospital, who responded amazingly), he leant down to my level to talk to me and told me I had e legitimate excuse for missing assessments and stuff and would not be expected to catch up on the work at all. I said I’d missed so much and didn’t want to get kicked out and would really still like to do the work, and eventually he agreed that he would mark it for feedback but wouldn’t put my grades on the system.

My personal tutor was running the lab session. I was emotionally overwhelmed and physically exhausted and I fell asleep. First I just curled up on the desk, my mind in turmoil, completely overwhelmed, and I wrapped my arms around my head just to block out the world. And my tiredness took advantage of the darkness and the quiet. I was woken by her calling my name. She told me that if I was going to be there the least I could do was make the most of being in the lab. She didn’t talk about why. She wouldn’t go there, that’s beyond the boundaries that were set out to me last year. My friends were kind of shocked at the lack of support they thought they witnessed, but I was so scared to tell my personal tutor I’d been in hospital that I just didn’t. Uni aren’t supportive, so my disability advisor and the one helpful lecturer are the only people who know. Anyway, I removed myself from the room. I went into the toilets and messaged my new hospital friend and she just got it, and we just messaged.

I phoned My Fellow Third Wheel after the lab. He didn’t know what to say so he made things a little worse. I got on the tube to Embankment so that I could go to McDonalds along The Strand. In doing so, I saw the Christmas lights there.

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Christmas Lights at/leading to The Strand

This is significant, because about a week ago I got a flashcard and made a list of all the things I want to do in London at Christmas time before I y’know… cease to exist (I was trying to give myself something to… Something).

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Yes, the bullet points are the London Underground logo – you can take the girl out of London, but you can’t take London out of her heart… (I mean, I currently want nothing to do with London but ssshhhh)

My list included things like:

  • See the Oxford/Regent/Bond/Carnaby Street Christmas lights
  • See the Covent Garden Christmas decorations
  • Go to Leicester Square
  • Go to Winter Wonderland in Hyde Park
  • Wander around the Harrods Christmas section (can’t afford anything but we used to do this when we were younger just for a day out)
  • See The Strand Christmas lights
  • See the Trafalgar Square tree and carols
  • Go to various Christmas markets
  • Go ice skating at The National History Museum or Somerset House

Anyway, from The Strand, I got on a packed commuter train from Charing Cross, and went to Sidcup. I saw Auntie Godmother and her family, but I was hollow and beaten and I just wanted my dog. I had dinner, had a long chat with my eldest cousin where I actually felt like a helpful human being… And I just felt part of a family. They were compassionate and understanding and they weren’t angry at me in the slightest. And then I went back to the house where I feel like a pain in the butt. But I was granted by the wagging tail of my furry rock, and I loved the fact that he couldn’t stand the thought of being apart from me, because he just made everything feel ok. He wakes me up when I’m unwell because he seems to know what’s going on in my blood before any test does. I feel safe sleeping when he is around. I’d been away from him for one night, and in that one night I nearly died and didn’t know until I happened to check by chance. I wanted the safety of his nose. My mum told me this was stupid, that I couldn’t rely on a dog. She seems to forget how many times he has saved my life. So I wanted my dog. I didn’t want to be with my family because they really aren’t good for my mental state right now. Remember this. It becomes relevant later.

I woke up at 1pm the next day, having spend the night with a chocolate labrador curled up in bed with me using my ribcage as a pillow, staring up at my face as I drifted to sleep, his tail thumping against the bedding each time I opened my eyes or moved my hand on his fur. I was at the stage where I was starting to switch back no mentally but couldn’t deal with my health, so was just… Not. I was treating myself and taking my medications and everything, but I wasn’t consulting anyone or checking my blood glucose levels or monitoring the acidity of my blood or going for any blood tests (I have the stickers for a bunch of blood tests I am meant to go and get. No.). I can’t throw that back into my brain without breaking down again. Breaking down. Is that what this is? A mental breakdown? It’s an acute deterioration in my mental health that I’ve never experienced before but is that… I mean… Am I broken? Anyway, I can’t stand to see bad blood results or have them told to me so I’m just not letting those blood results exist. My way of dealing, no matter how wrong it may be. Wonderfully oblivious to how bad the situation is, just like everyone around me who seems to think I’m better. If they get that peace of mind through ignorance, then so do I. Right? Wrong. Stupid. No, that’s not why I did it, it’s just what I use to tell myself this isn’t so bad.

I spoke my philosophies about what is really important to Uni Pal, and she, like my friend who saved my life with a phone call, told me I need to write a book. So all I did yesterday, all day, was write out my thoughts on that. Not even 2,000 words. All day. That’s all I had to show. But it is an entire something more than nothing.

I heard a phone call. Nobody thought to bother me with its contents because nobody thought I should care. Nobody thought I had any right to. My nephew did, because it was his great uncle. My sister was on the phone, it was her uncle. My dad was cut up – it was his ex-brother in law, and they were close. But I wasn’t allowed to be. He was assumed to be nothing to me. But this guy, when I met him when I was younger a couple of times. He included me. He made time for me. He made me feel part of a family that wasn’t mine. He talked to me, and he gave me this big long pep talk about how blood didn’t matter and people who thought it was all that did were people I didn’t need in my life. He’s in a coma. He has a tracheostomy. I learned that in one overheard bit of the phone call. Nobody would tell me anything. I waited until they talked to my nephew.

Turns out the uncle that isn’t mine to call uncle has a huge tumour in his throat and couldn’t breathe. They think his cancer is back. He did so much for me in terms of settling into the new family that formed when my parents cemented the joining of our families by making my little brother… He’s such a nice guy, and he lives all the way over in Canada. I thought that I should feel stupid and guilty for being so concerned for him, I thought my family would be angry and they did get a little snappy at me because they don’t see why he should matter to me. But I remember a talk he probably doesn’t even remember having with me. And it meant a lot. Nobody would tell me anything. They were confused as to why it even mattered. And then I tried to figure out how I felt about the situation, but I couldn’t even get upset or hurt because I COULDN’T FEEL EMOTION again.

So I mean… I bought myself a wireless printer online because it was less than half the full price thanks to black Friday deals. I walked to the shopping centre near my family’s home with my nephew and we nearly got locked in WHSmiths. I bought stir fry and loads of soft drinks and fancy fruit juices (apple, lime and mint anyone??) and then I bought myself some study incentives – flash cards and a very cheap but new fountain pen. Turns out the fountain pen made my writing SO MUCH neater (I write with my left hand after my dominant hand was half paralysed by some surgery, and usually have to write half a page of random letters before my left handed writing is neat). I sat with my nephew and brother and they wrote with their non-dominant hands too, and then got annoyed that my left-handed writing was neater than their dominant hand’s writing… And then we just sat and talked. Until 11pm.

I got out stuff to study because I felt like I should but didn’t care but don’t feel pressure but sort of know I probably should. I wrote the title Time To Attempt To Uni and ten minutes later put away my study stuff, with my brain all ASDFGHJKL, having written three words half way down the page: yeah ok NOPE.

My brain just cannot even is not ready nope.

I am trying so hard to get back to normal and I think I keep running before I can walk. Even tiny steps are too much. Asdfghjkl

 

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Connected To The Disconnect

Even when you have nothing left to give to your health, it still demands everything you have. It demands things of you that you just don’t have any more. Take my type 1 diabetes, for example (without the other tablets and health hiccups and stuff). It fills my day with calculations and ties me to a continuous infusion of medication that I have to adjust and change all the time in order to stay alive, but could also screw up and accidentally kill myself with if I under-/over-medicate. It was never a burden until I had nothing left to give it – I was so young when I was diagnosed that I never remember anything but needles and finger pricks and checking packaging before I eat. But right now I have nothing left to give anything. So everything is sucking the life out of me.

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Yesterday evening – Einstein the insulin pump, changing infusion site, drawing up a new cartridge of insulin, and re-dressing the wounds from the two central lines I had recently (both 1cm apart, and one of which is a little infected)

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This morning – checking my blood sugar levels were low enough for me to fire a new CGM into my arm for the first time in a couple of months, without the thing thinking it had a mechanical error (my blood sugars run so high most monitors just assume they are broken)
I got phobic about putting in a new continuous glucose monitor. It has a spring loaded needle which puts the actual cannula into my arm (attached to a plastic disc about the size of a 50p, which sits on my skin), and I couldn’t push the thing to fire it in. My little brother (who is now taller than me so not really little) was super sweet. He stood there and put his hand over mine and pushed the weird contraption until it fired its needle into my arm. I seem to just be reaching this mental block around my health. I mean, I’ve reached a mental block around everything. But I thought it would clear once I left hospital.

And it isn’t just today and the insertion of a continuous glucose monitor. Yesterday I was sat there, and I looked down and saw this wire snaking out from under my top and sneaking into my pocket, and I realised it looked pretty medical. I realised that when my brain reconnected with some level of emotion, and was unable to cope with my health, being tied to a constant reminder of the huge disconnect between me and my healthy friends was going to… Hurt.

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So I put Einstein in the little hoodie I have that is designed to be used for an iPhone 6. And now he’s kinda a gangster badass insulin pump – a pancreas in my pocket. 

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Oh, meet Albert (top) and Einstein (the insulin pump, bottom) by the way. 10.4 is the lowest blood sugar reading I’ve had for… A very long time. I took a photo so that when I can feel again, I’ll be happy about something.
I have also lost the ability to be able to pick up my phone and message my specialist community nurse, who was amazing while I was in hospital. I agreed to meet her and one of my consultants in a casual, non-serious setting just to talk through how much of a mess I became during this admission and get all my feelings out in the open (I don’t talk about my feelings so it would have been a waste of time anyway) but now the disconnect between me and my health teams is so much greater than before. I put my life in their hands, and they dropped it. Pretty soon I’m going to get angry about that. Pretty soon I’m going to feel let down and worthless and like a piece of dirt who isn’t worth trying for, because of the way they treated me.

Two years ago, I had almost no hair. Due to a medical treatment I’d been given, it all decided to flee my scalp like rats leaving a sinking ship. Wise move, I guess. But I developed a small obsession with wooly hats around the time, because it was winter and I was used to having thick hair to keep my head warm. I bought myself a new wooly hat the other day, and put it on today, just because I found some of my old hat collection and immediately decided I needed to wear a hat. And then I saw myself. And I looked sick. I looked properly sick. Usually there’d have been an emotional response to that sight… But there wasn’t. It was what it was. I stared at the creature in the mirror for a while, and took in the cracked lips so pale that they blended in with skin drained of all colour. I looked at the black shadows around sunken eyes. I just stared. Normally I can never look at that person for long. In a few days, I won’t be able to. But there was no emotion there to stop me this time. So I just stared.

My mum drove my furry rock (dog) and I to some fields and woods at the top of the valley we live on the edge of. 

The drive home – Autumn in the countryside

When I was in hospital all through my teenage years, sometimes I’d escape from my local for the afternoon and we’d walk the dog around there with an IV pump in my backpack. It always induces feelings of such freedom and happiness. It’s refreshing (especially in the cold) not only physically, but mentally.

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This photo occurred, I liked it, so thought I’d share

My mum keeps going on about university, asking me when I’m going to do some work in a tone that says do some work I highly disapprove what do you think you’re doing? I’ve explained to her that I don’t care. I’ve explained to her that my head is a mess, that I can’t even think or feel or anything. She just doesn’t get it. She isn’t happy with me being here. She isn’t happy with me not being at university and she’s pushing and pushing me to go back. She clearly disapproves, and makes her dissaproval clear. She tries to discuss normal stuff with me as if I give a crap. After I’ve told her that I can’t.

And then she let her opinion run riot. She decided to grace me with her thoughts. She has a rally crappy outlook on mental health, in that she seems to think it’s something a person can choose to change. She thinks it is a simple case of thinking more logically or changing your outlook or whatever, which in my opinion rally undermines the severity of it all. So when she turned around and said to me,

You can’t feel anything because you keep telling yourself you can’t. You think that you can’t feel emotion so you can’t. I wasn’t surprised. But I did want to scream. Because there’s no thought in my brain, nothing to think that. I am trying to think and process and trying to force emotion and it just won’t happen. But she went on. She said the issue was my attitude and that I need to change my attitude in order to change my mental health. She thinks that’s how depression works. She thinks I am holding myself back, that I can choose to break out of this emotional void. And my brain was just all how can you even be focussing on that – do you not understand what I’ve been saying to you, can you not see. How can you still push me into thinking uni is a priority when nothing is a priority. I’m so dead, and you’re still stabbing at the corpse of my mind. Why?

And then she asked if she could go there and I didn’t care enough to respond. She started almost attacking me, saying she didn’t understand stuff and that I didn’t seem to take care of myself of manage my health when SHE DOESN’T EVEN LIVE WITH ME. What does she want me to do, set off a flare and notify the press every time I inject or take a tablet or do a calculation? How can she not understand how unable I am to cope, how I have been so unable to cope that I’ve avoided all health environments and professionals for a few months because I just could not cope with it at all. I gave even when I had nothing to give. And now she tells me I didn’t give enough. She questions it. She… Criticises it.

And then she made everything about her. Knowing that I’d just tried to explain that my brain couldn’t cope with anything, she made everything about her. She started saying how difficult the last week had been for her. She told me how, among other emotions, she’s been so angry when I didn’t pick up my phone a week ago (because I was in hospital). She said I had no idea how she felt. And I couldn’t. I just couldn’t. I removed myself from the situation, and managed to get out of the room before the tears came, because she doesn’t deal well with me crying and probably would have got annoyed.

And there it was – not even full emotion, just a tiny snippet of what should have been an emotion (not yet the pain so intense it is almost physical). But I couldn’t handle anything. I couldn’t handle any anything. I walked into my room in the pitch black darkness and fell to my knees, leaning my torso onto my bed kind of like I was about to pray. I sobbed so hard I couldn’t breathe. And this time my brain just shut down to the point that I slept. Immediately. Without remembering drifting into sleep. And for the first time in over a week, I had a dream. I was in a lab at uni, and I woke up and all the lights were off and everyone had left me, and in the darkness that I then woke up in, I actually thought I was trapped in our first floor laboratory. I was still wearing my wooly hat. Three hours had passed. The apathy had settled back in place.

I couldn’t deal with emotion to the point that my brain switched off its entire self. That’s going to be a problem when I start feeling things. I’ll just shut down all over the place.

All day I’ve not replied to uni friends. I can’t. My Fellow Third Wheel is even missing the mark this time (he started off with awesome responses, and said he’ll come and visit me on Tuesday – but I think mum wants me back at uni by then. She seems to care about the work more than me). The only person who gets it is my hospital friend, who escaped from hospital yesterday. We’ve been messaging non-stop. She says the right things. She relates in a way nobody else I know can.

I posted the picture of me walking my dog to social media, with the following caption

“No place I’d rather be”

Empty, lost, still trying to figure out how to feel anything at all, but out of hospital and back with my best bud. Guess it only gets better than here

That’s not me. That’s not who I am. That was written by my emptiness. I guess it was partly a cry for help – my brain desperate for people to know how empty it is so that they’ll back off and leave me alone or help re-fill it. It was me letting people know I’m out of hospital without having to start conversations with them, because I don’t know how to talk. I guess it was me connecting to the disconnect, acknowledging it, putting it out there so that when I don’t reply people know it isn’t personal. Because I know there is a “but”, my brain just can’t reach any point past empty, lost, still trying to figure out how to feel anything at all. And my own mother seems to think I can choose not to be that way any more.

 

Auntie Godmother was quite good. I messaged her to let her know I’m home, and she told me I have to take all the time I need to recover emotionally. I told her about the state of my mind, and said I can’t feel, but I know that when everything hits me, family is going to be very important to me, and could I drop by and see them. She said of course I could, any time, and she said that the way I felt was understandable. I told her I wasn’t even sure if I wanted to go back to uni, but that I couldn’t even think about that because my brain is still all asdfghjkl.

I guess…

Look I don’t even know what this post is, thank you for reading it if you did, my apologies for writing it. I’m trying to figure myself out.

So Much More

Maybe it meant more because I hadn’t seen him for over a year.

Maybe it meant more because he doesn’t show affection or emotion.

Maybe it meant more because he’s my flesh and blood.

Maybe it meant more because his fractured shoulder blade is still healing so it’s painful for him to move his arm.

Maybe it meant more because it was the first thing he did when he saw me.

Maybe it meant more because I nearly didn’t get to fit awkwardly into his arms, because I had to fight so hard all day to make it to that moment and I was barely conscious, and maybe it’s because I’m genuinely scared that I might not get a moment like that with him again.

My uncle arrived at our house just before midnight last night with his heavily pregnant wife. He’s this strong, steely figure who never shows any emotion. If he’s smiling in a photo it’s a big deal and it’s usually only when he’s with his kids (sometimes his wife – he’s mellowing). His family wasn’t ever particularly affectionate, but beneath the steel he has a pretty big heart. I stayed up waiting. I kind of always wanted to be close to him, and there’s a picture of him holding me as a baby where he’s almost smiling. It’s framed on my bedside table and I cried for half an hour when I found it a couple of years ago because I never had a dad when I was growing up, and I thought I was never held in a pair of big strong hairy arms (also, he’s almost smiling, so I kinda think he may love me a bit, which made me feel all the feels). When he saw me, he said hello and, shivering, shuffled towards me, his arms outstretched for a hug that took me by surprise. It wasn’t a brief hug, it lasted a few seconds, and I was sort of too stunned to appreciate it. It meant so much for so many reasons. It was so comforting for so many reasons. For so long all I’ve wanted was to be held. Right there in his arms I felt part of our family. I wanted to cry because I spent all day feeling like death and suddenly it was all worth it.

Now that my uncle is here, I definitely won’t go to hospital. The PTSD is no longer the only thing holding me back (and it was strong enough on its own), but there’s a guilt and a fear. I don’t want my family to be angry with me. Anger seems to be an emotion that gets thrown at me a lot when I’m unwell. I get shouted at, and I understand the frustration, I understand that I’m destroying my family and I don’t want to do that any more. My uncle turned 50 last month, and he’s over for 4 days so we can have a party for him with family and the people he grew up with, not too far away from the place he was born I guess. All our family and family friends are coming together – unofficial aunts and uncles, and I love that. I love being all together. This is his time. His wife is heavily pregnant and it’s her time too. This is about them. I don’t want to ruin that. I don’t want them to worry. I don’t want to upset anyone or throw any spanners into the works. Also… I want to be there. I want to be with them, to enjoy their company. Because he’s this person who I think might love me, who gives hints that he cares more than just because he’s obligated to (since we share DNA). As I’ve got older, we’ve had conversations. Sometimes we’ve messaged, half a world apart, while he was wide awake in pain after surgery and I was laying in an ICU. And he hugged me in a way that acknowledged how awesome it is that I’m alive. It meant more because he so nearly didn’t get to hug me so many times – so many events have almost taken that moment from the pair of us.

I spent a while unconscious on the floor after I last posted. My dog curled up with me and I woke up with him laying against me. I ended up kind of delirious at one stage, slurring and unable to make much sense. After a few awful hours, I think the acidosis plateaued, or at least my body got used to it a little. My mum asked me to do chores and stuff, with no idea how little energy I had. I tried. I fell in a heap on my bed. I slept.

Then, swaying in my chair, my vision drifting in and out of focus, and sometimes losing the ability to hold the pen, I made notes for the test I have on Friday. Seven large flash cards. 13 sides. It took me hours (and not only because my study attempts initially deteriorated to me having a meltdown and ordering a pizza I couldn’t really stomach, and then in the evening I found myself somehow listening to a 10 hour loop of Gandalf nodding along to a jazz rhythm for 22 minutes). My heart kept feeling BIZARRE, palpitations like it’s felt when I’ve had a junctional rhythm or atrial fibrillation. It gradually started happening more and more often, for longer and longer. My lower legs ballooned to the point that my usually baggy skinny jeans were cutting into my ankles, and the seams were suddenly forced tightly against my shins, leaving deep red marks. I was very spaced out, and messaging my friend, we discovered that I was easily confused and couldn’t grasp simple stuff. She kept going on and on at me to go to the hospital. Eventually I couldn’t see the screen to message back. I don’t even know what bit of me is rebelling any more.

But on Monday I have a test and another assessed thing. On Wednesday I have a tutorial. I can’t miss these things. I need to stay out of hospital until at least Wednesday afternoon – I don’t have time to be unwell, not now. And yet I know that lasting until Wednesday is near impossible. I know that lasting to my uncle’s party on Saturday will be a real challenge. I should have gone to hospital today. I nearly did. I fear I’ll end up there tomorrow. If somebody had found me collapsed, I’d have been taken off in an ambulance. The thing is, I’m still unwell enough to call one right now. But I don’t want to miss uni, especially not assessed stuff. I’ll run myself into the ground to try and be there, I don’t want to have the talks that I had this time last year. I don’t want to give in. I will be there if it kills me (and so, so many times it nearly has). And yet… I don’t know how I’m going to make it to tomorrow without collapsing and ending up in A&E. I don’t say the full picture here, not the full reality. But this is bad. This. Is. Bad. I shouldn’t be here. I’ve no idea how I made it through yesterday and honestly I don’t know how I’ll get through today (I know as I write this today is only 32 minutes old but hey). I should be unconscious. My body can’t do this – my organs won’t do this.

But feeling and being so unwell made seeing my uncle mean so much more. It makes everything mean so much more, actually.

Exit Wounds

I stayed in bed until 7:30pm yesterday. I wasn’t any more unwell than usual (although I was unwell), I just didn’t want to face the world, and so I slept most of my day away, interspersing my escapes from reality with waking moments during which I watched YouTube videos until I lost the will to reality again. The events of the previous day had got to me. I felt guilty about the fact that I existed, about the wedge that my health and I had driven into our family and the clear dislike directed towards me by certain members of the household I grew up in. To put it simply – I wallowed. I messaged WR Uni Friend, and she said we all need days like that sometimes, and chatted away with me until we both concluded that I needed to leave the room before I slipped so far onto the downward spiral that I was beyond the point of no return. HK Uni Friend was one step ahead of us both there, and had invited me to wander to Hoxton with her later that night to collect a blender she had ordered.

So I found myself walking around sketchy areas of a dodgy estate in Hoxton late at night with HK Uni Friend. Imagine Dragons played in my ears, and I was too numb to feel any sort of apprehension about where we were. And then my music stopped playing and the familiar sound of my ringtone sounded in its place. The caller ID told me it was my mother, and I answered, too switched off to figure that I could feel any worse.

She said I sounded unhappy. I told her that I was. She asked me why… And I couldn’t even. I let the silence answer for me, and eventually told her that all I did was screw up and I couldn’t do anything right. She told me that wasn’t the case. It feels like the case, and it felt like the case, and she just kept asking why – the why was because of that family… my family, the people who raised me and taught me to hate every fibre of my being all at the same time. At that moment, it was because of her behaviour the day before.

I told her about the day before; in her mind the fact that she’d apologised made everything ok – the fact that I’d acted civil but so clearly not been happy indicated to her that I was fine. She seemed confused that I hadn’t outwardly shown my feelings, I’d just been normal me in her eyes. I wear that face so often that it is normal to her. I spent so long hiding the emotional pain and the shame of being me that to her that is just what normal me looks like. I told her that I did that all the time, wore a mask, acted ok because she got angry when I made an atmosphere or didn’t look happy. I told her I hadn’t been happy at “home” and she insisted that I had, smothering my reality with either simple cluelessness or denial. And that opened a whole can of worms. Because I don’t feel adequate. In that house I feel like less than dirt. I am belittled and criticised and ignored by a certain person and never anything else. And it all came out. I let it all out. And I walked through Shoreditch (with HK friend walking on ahead of me) eventually just crying as I talked, and pausing to listen to the long and painful silence on the other end. I felt bad. With every speechless silence guilt roared within me and I would apologise and say see?! I can’t even say sorry right! I made clear that it wasn’t a dig at any of them, that I was sorry I couldn’t be the person they wanted me to be and that no matter how hard I tried I was never enough. I told her how much I tried. She told me that the previous day she’d been worn down by me. I told her I’d been worn down by years of not being good enough, of being treated differently, being treated like less, being made to feel like an outsider and shouted at for every tiny thing by a certain member of our household. And I cried as I talked about those feelings. I didn’t give examples. I just said the same thing over and over until it sunk in, until she finally let it hit home. While she was listening, I let it all out – that I was done with trying to fit in that family, that I was done with trying for any sort of relationship with the man that I call dad because he even looks at me like I’m filth. And I just cried until I almost couldn’t talk. I walked along forcing out words, telling her things she’s heard before but never listened to. Telling her that she never listened, determined that she would this time.

I didn’t want to make it a criticism of anyone. It was a criticism of myself, I was so broken down that I agreed with them, I felt like the utter dick they make me out to be and I hated myself as much as I feel hated by a man I once idolised. I didn’t give examples. I didn’t mention specific incidents and especially not the ones she knows nothing about. My heart has been broken by a family member that she loves a lot, and I don’t need to change her view of him. It would be selfish to. She told me again that I was asking her to choose. I told her it was very, very simple. I wasn’t asking her to choose, I had made a choice and chosen for her. I was done. I said it wasn’t immature, it was necessary for me to carry on, for me not to have a breakdown and for me to stay whole. I spoke about how the attitudes directed towards me in that hose made me feel like I didn’t deserve to live, how to continue living I’d had to stop caring about what someone thought of me so that his behaviour couldn’t hurt me any more, how I know that now it might make me look offish but that I didn’t regret it and wouldn’t apologise for making no further efforts to have a relationship. When somebody has hurt you so much and injected years of poison and that look into your mind, how do you come anywhere close to holding them dearly in your heart? I told her I couldn’t go back to that house, for the sake of my soul, and when I tried to explain why I just broke down and ended up walking with my hands on my head saying, I can’t… I just can’t go there… I can’t… I can’t ever go back there again as my mind just fell apart and I surprised myself at my inability to say anything but that seven or eight times… In the middle of Shoreditch… Out in the open. I was too distraught to care. I had carried these feelings since I was a child.

“I’m sorry for everything
Oh, everything I’ve done

Am I out of touch?
Am I out of my place?
When I keep saying that I’m looking for an empty space
Oh, I’m wishing you’re here
But I’m wishing you’re gone
I can’t have you and I’m only gonna do you wrong

Oh, I’m going to mess this up
Oh, this is just my luck
Over and over and over again

I’m sorry for everything
Oh, everything I’ve done
From the second that I was born it seems I had a loaded gun
And then I shot, shot, shot a hole through everything I loved
Oh, I shot, shot, shot a hole through every single thing that I loved

Am I out of luck?
Am I waiting to break?
When I keep saying that I’m looking for a way to escape
Oh, I’m wishing I had what I’d taken for granted
I can’t help you when I’m only gonna do you wrong”

Imagine Dragons, Shots

There was so much that needed to be said. She needed to know. At first she started trying to argue back at me, and eventually as I stood outside the 24 hour Beigel shop in Brick Lane with HK Uni Friend, she told me she didn’t know how to make it better, that it wasn’t all on my shoulders (hallelujah!). But it feels like it is. I feel like the knife in their backs, the spanner in the works. I have been made to feel like it is all me for so long and for so many reasons that I could see no other view. I submitted, I held my hands up, and I just apologised. I wanted to make it better. I told her he didn’t even need to say anything any more – my mind generated the self hatred spontaneously now. And I remember crying and saying  I thought I’d got away from that feeling, I thought it was away. I thought I was away from it. and her behaviour towards me reminded me how awful I am. She didn’t want to hear it, a couple of times she told me what I was saying wasn’t fair as her own denial prevented her from admitting reality, but I didn’t want an argument.

I then cried at her because they have my dog, and  I really really want to see him but I genuinely just cannot be near that house or my “family” at the moment. Especially narcissist nephew or “Dad” because… Yeah.

After the phone call I bought a smoked salmon bagel and an apple puff pastry (actually, HK Uni Friend paid) and we walked to Old Street, London stretched out before us and around us. I didn’t talk much, just listened to music at first before my brain could human again. Usually when I get upset my mum brushes it off, she tells me I’m being ridiculous or she doesn’t want to hear it or that it isn’t the right time when I try to tell her what is going on and how I feel. This time there was no need for anything that was going on. All that was left were the emotional scars that she had re-opened and dragged to the surface.

It’s weird that the only people anywhere near close to hating (or even disliking me) are my parents. And it hurts. I look for family everywhere but in my household. I know I will never  find or feel part of one there. That hurts too because all I want is to belong or to feel part of something. I feel so lost. I guess I just let go now, I cut off the dead wood in order to try and grow from this.

My mum sounded pissed off when she hung up, but she messaged me apologising for upsetting me. She apologised for the whole situation, and I pointed out that it was nobody’s fault (I mean, it is, but we won’t mention the aggressive elephant in the room 40 miles away). She told me she is off work today is I want to talk or whatever. I don’t. There’s nothing between me and them, I put a wall up in their presence and I get a defensive guard, I can’t relax, I’m on edge, waiting for whatever I did wrong now. Because I always screw up. Always. I am already dreading Christmas because I have to be with a certain member of our household.

I carried on, because why wouldn’t I? When I got back at midnight I sat up making notes for today’s lectures. I hardly slept, and was up, showered and making more lecture notes before my alarm even went off this morning. I sat through lectures, made notes in between, and calmed my friend who has a slightly botched tattoo and thought she had sepsis or at least a staph infection (as someone who has had sepsis multiple times I assured her that she didn’t have sepsis as there’s no way she’d have been able to lift her head off the pillow let alone go to lectures, plus there was not temperature). Healthy people amuse me with their melodrama around health. On group chats people freak out and tell each other to go to hospital when they have a simple cold. I think they just like drama. To shut up the whole situation I told her to feel my pulse, which at that point was very weak and far from regular. She was a little alarmed, but eventually settled.

I saw a student with a very young golden labrador (not quite fully grown) wearing a service dog vest on my way to my last lecture, which was like rubbing salt in a wound. On the subject of health stuff, I just got a very worried message from HK Uni Friend who saw two ambulances parked outside the front of our uni, automatically assumed they were for me (especially in light of my state today) and F R E A K E D   O U T. It’s kind of nice to have been thought of. Also highly amusing.

I FaceTimed my little brother for a couple of hours last night. He’s the only person in that house that I want to talk to. He was sat with Narcissist Nephew playing video games, but my conversation was for once preferable to a games console, and he just sat and talked with me for ages. It was so nice. He was concerned about me going to Hoxton late at night, which was super cute. He was wearing some of the new clothes he bought when we went shopping and showed me his outfit because he’s so happy with his new clothes (bless him). He asked me to call him again today when he gets in from school… So I’m going to go do that. Sorry for whatever this was. Yeah.

I’m free now. I finally have room to grow into whoever I am. When I can stop hating myself (which I had, until my family struck again).

“Don’t throw stones at me
Don’t tell anybody
Trouble finds me
All the noise of this
Has made me lose my belief”

“I know it’s gotta go like this, I know
Hell will always come before you grow
Trouble found me, trouble found me

I’m going back to my roots
Another day, another door
Another high, another low
Rock bottom, rock bottom, rock bottom”

Imagine Dragons, Roots

No way but through.

I’m free now, I feel. It hurts so much that I have to be alone and away to try to be happy when I all I long for is to surround myself in family, but I think it needs to be done. All the cards are on the table now, ready to be blown away by the wind. And then we can all go our separate ways.

I also feel it isn’t as simple as that…

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.

 

Something About Nothing

I haven’t been up to anything interesting, but I feel like I should post about my first week back home because I have just been feeling all the feels. This may be an entire post of saying something about nothing…

20/09/16

I managed to post my little brother’s birthday card. After what can only be described as a financial shenanigan, I managed to buy just a single stamp, and then I no longer felt like the world’s worst sibling. I hung out with my Italian Uni friend for a while, we sat on Mile End Road while her and her friend ate crêpes, and then I found myself sat on a train in Cannon Street station with a rucksack on my back that I’d thrown a change of clothes into. We rolled out of Cannon street, the shard on one side of the river growing closer as we head towards it. The train curled around what I recognised as the covering over Borough Market, and I could see Canary Wharf and Tower Bridge as we crossed the river. The Gherkin, Walkie Talkie building etc. were clustered together behind us. It’s weird. This view should no longer amaze me but I can’t stop taking pictures of it. It’s all so familiar. The journey from that station itself felt like home.

I arrived in Sidcup and sat on the doorstep for 20 minutes waiting for my cousin to get home from school and let me in. When she found out I was going to be there for dinner she messaged me and asked me to stay the night, unaware that this was already the plan… But damn did it make me feel loved. I laid on the sofa just chatting to her all afternoon. It felt like home. My own food was still in their cupboards, they made the spare bedroom mine and it felt like I belonged in it, and my phone automatically connected to their wifi.

21/09/16

I relaxed… so much that when Auntie Godmother found out it was freshers’ week (and as we walked the dog told me to stay over for as long as I liked) and started telling me their plans for the next few days… I decided that I would go back. She left me a set of keys, but I posted them back through the door because that was what we’d arranged (we later realised how ridiculous this was), and I headed back to Mile End. I got back to my flat (can I call it a flat? It’s basically a room) at 13:56 and somehow 9 minutes later I had showered, re-packed my rucksack, cooked some mange tout, and was standing outside waiting for one of my old sixth form friends.

We walked to Brick Lane from Mile End (took an hour). I took a million and one pictures of the ever changing street art that’s sprayed on every wall. The restaurant we’d planned to go to was shut, so we headed to Shoreditch Box Park and looped back on ourselves. And that was when I became officially broke. We walked past a homeless man and his dog. He was thin and he wasn’t begging, he was just sat there focussed on the Staffordshire bull terrier that cowered against him on his lap, stroking it. And as another human, I couldn’t ignore that. Judge me all you want for what I did (believe me, I’ve been judged), but I went into the nearest shop and bought a tin of dog food and the biggest, nicest looking sandwich I could find (a Finest BLT) which then meant I couldn’t afford any food for myself (my friend insisted on buying me a sandwich though). The man said thank you but I felt kind of ashamed as I handed him this stupid sandwich because I wanted to do more and to me just handing over one sandwich that wouldn’t even last five minutes felt like such a stupid, almost insulting gesture.

I still feel bad about it, even now. Because it just felt so small, so stupid, so… Not enough. I felt even worse when my actions were later questioned, and I was told not to dare mention my lack of funds again because if I didn’t have much to give I shouldn’t have given it away… Humans are the most selfish species on the planet. How can someone even think like that? Without that money, I still had tins of food in my cupboard (yes, I’m down to tinned food), and a roof over my head. I wasn’t going to be any worse off, and that man was. I still stand by that decision, and I’d do it again. I don’t think it was anybody’s place to criticise that – I’ll do what I want. In a well-off area, nobody had given him a penny. People who could have helped, people with so much disposable income… did nothing. How?

We got on the tube and took a slow walk from Westminster to Charing X (we parted ways somewhere along the route). I love being by the Thames. If you’ve followed this blog for long enough you will know of my love of rivers in general, but whenever things used to go wrong or get too much, I’d find myself by the Thames. The smell, the sounds, the view… I will never tire of it. I had less than a minute to get on the train before it left the station, but I made it, and I returned to Auntie Godmother’s for a big bowl of chicken casserole and rice. I laid about on the sofa again and we all just watched TV together. Eventually, Uncle [Auntie Godmother’s Husband] walked in. My dad doesn’t usually say hello to me when he walks in, so when he greeted me with an upbeat “hello” and then said, “it’s nice to see you” I was a bit stunned. Auntie Godmother’s laugh filled the silence that followed as I sort of sat there scrambling through my mind for a response, genuinely not expecting that. Eventually I managed to spit out a you too.

On the subject of unexpected things, that evening I also got a lovely message from my next door neighbour (the one with the puppy who I spent ages talking to over the summer). She said she just thought she’d check to see how I was getting on in my new flat. She asked if I knew what modules I was doing yet and said she hoped I was eating ok and keeping well. She was just taking the puppy to his training classes but she said she’d speak to me soon. I felt all the feels and had to be retrieved from cloud nine so that I could actually put my feet back on the ground and walk out of the room to go to bed. I fell asleep watching vlogs.

22/09/16

I left again, posted the keys back through the door… And then bumped into Uncle [Auntie Godmother’s Husband] as I was walking to the station. He and I had both caught the cold that their younger daughter has had recently, and he was carrying a bag full of every cold and flu medicine under the sun. He told me that I was more than welcome to return that evening, and that if I changed my mind I just had to text and let them know as they had to go out that evening. I went back to Mile End and met another friend from uni (can’t think of a name to give her… She’s from Portsmouth so I guess she’ll have to be Uni Portsmouth Friend). We went to the pub and had a catch up, and then went to the freshers’ fair.

I went straight to the sports hall (I’d never been there in my entire life) and signed up for a load of sports societies, because I CAN DREAM and it was to awkward to say no or explain that playing rugby will not only probably break me but make my heart severely grumpy. So I continued to live in my dream/ denial and put my name down for a lot of stuff (I could have signed up for so much more but I didn’t). I heard a guy’s voice and looked up to see one of the first friends I made from biomed. He wrapped his arms around me and we stood talking. He commented on how different I looked, the shock visible on his face. He couldn’t believe how unwell I looked last time he saw me compared to how I look now. He wasn’t the only person to make this comment. So far everyone I’ve met up with has been like wow… You look like a different person, you have colour and you look SO well! I never understand why people say “I hope you don’t mind me saying” before sentences like that. I feel better. I’m still unwell and battling against some stuff, but last time these guys saw me I was as unwell as I’ve ever let them see me (apart from the occasional hospital visits, during which this particular guy saw a central line in my neck, nearly vomited, looked horrified, and left).

I felt like my health is no longer a barrier because it no longer feels like a problem. This is probably because I have shaken off all thoughts about it and am refusing to acknowledge it. I’ve accumulated approximately a million missed calls from the hospital over the week, a couple of unanswered and unread texts, and an email I refuse to open because those guys aren’t going to ruin my mood and everything right now. I don’t want to go through with their hell on earth treatment plan, and I don’t feel like they are thinking about my wellbeing in (what feels like) forcing me to go along with it. They seem to view me as a personal challenge and I feel dehumanised and meaningless as a result. So I’m done. My brain won’t even go there, I’ve just reached this mental block that is getting bigger and bigger, and it feels so right. I guess my brain is like a little animal just protecting itself from things it knows will hurt it. It’s already wounded and recovering, and its lashing out at things that may jeopardise its chance to feel normal again.

I then went swimming, because I was living in dreamland (from our uni it’s only £1 to get in). I walked through Mile End Park on the way home, feeling surprisingly good (I was feeling the effects, but not as awfully as I have in the past). It was weird to walk through the view that I sit staring at from my window. Emotionally, I felt so much better after my swim. I was refreshed, the slate had been wiped clean, and it was time to face the world again. Of course I signed up for the swim team earlier in the day – last year a guy signed up who couldn’t even swim one 25m length of the pool, and is now competing in an Ironman… There are no limits if you just go for it (this is what I tell myself, as I’m breaking myself to try and feel whole again). The swimming club flyer is now stuck on my wardrobe door. I kinda just like looking at it and reminding myself that one day that may be me.

A friend who I’ve mentioned on here but will not name now, made a very insensitive comment about a very serious issue that they were too self absorbed to understand. Things like that happen a lot with this person, and everything feels like a competition, even health issues (mental vs my physical stuff that this person knows about) are compared and it makes me feel exhausted just enduring that all the time. This person is a very nice person and a very good friend, but I hung up the phone and cried. Because it was about my sister and a huge event she went through (for which there is now a national memorial) when  I was younger that is genuinely horrific and awful and wrong, and took a limb and almost her life. And this person once again said they had it worse (I discussed what they thought was worse than an event this country still remembers every year with a couple of other friend and my favourite reaction was this: “NO! That is not the… NO! That doesn’t even compare! How could anyone think that… NO! I can’t even sentence right now! I’m that… NO!”) and failed to understand that it was what had been done that was so awful…

I wanted to go back to Auntie Godmother’s, but I also didn’t want to move. So I stayed put and just stared out of the window.

 

Back Home In The City I Love

She reaches into her purse and pulls out £15. A trolley of empty boxes beside her, she holds the two creased notes out towards me. I thank her, and am told,

“This is the last penny you’re getting out of me for a year.” thanks to me (well, the place I’m living, so… technically me), my family are now in a financial tight spot. She can’t afford to give me any more, and she can’t afford to give me any money again. She’s given me the money because she wants me to go to the “welcome drinks and food” taking place in the restaurant in my accommodation. She says I might have to pay for the food, and hugs me.

I’m more interested in standing and watching her walk away. In my mind, I am coming home not leaving home… but my mum will always be my mum… and as she left I held back tears. I think she did too. She kept turning around to wave. I’d been meant to be meeting my Italian friend from uni. She usually bails on me. She did again. I think I may be done attempting to meet up with her. So my mum left, and I was alone… Until she called me to say

“You forgot Harvey and your notebook” (Harvey is the bonsai tree I bought at the start of last summer. Whenever I nearly die, he loses all his leaves. Seriously. I’ve nearly thrown him away many times thinking he was dead. And then he just grows new shoots and leaves again). This time she drives away, I lose sight of her faster, and it’s like ripping the plaster off instead of peeling it away slowly. She spent hours helping me move in, and now that she’s gone, I don’t know what to do.

(Change of tense here, because why not?

There was nobody around. It was awkward. At this stage of freshers, I went and sat in my kitchen with my flatmates and the awkwardness dissolved between us and our collective desire to get to know each other. I wandered round and could find nobody in the communal areas. There was nobody. My room is like a little bubble. I

Ex-flat-brother (who lived in my flat last year) also lives in this accommodation too. I met up with him. It was kind of awkward to my brain, but he’s a nice guy most of the time and has been a good friend to me in the past. We wandered around a bit, I showed him where the garden was (there was a BBQ, but nobody had showed up, so…) then we just sat on a sofa and talked for a bit. He showed me his room, and I ordered myself a pizza, onion rings and some chips, and took them back up to my room.

I laid on my bed looking out at Canary Wharf in the night. It was all lit up and so it illuminated the clouds that, as the night progressed, sank into a mist that glowed like a big yellow halo in the light from the buildings it had swallowed.

It was silent, and I was alone, and thoughts started to swim. I had to pay for wifi and have no money at the moment, so I went with the free service, which gives me 20MB per… some time period (whatever, it was too slow to watch youtube videos, so I connected to my phone). I watched Julien Solomita vlogs, then a load of Roman Atwood Vlogs, and then the latest Lance Stewart vlog. And then, as I rolled over onto my stomach to go to sleep, I hung my left arm out of the bed and said “Good night [my dog’s nickname]”. My hand closed no thin air and for some reason I had expected to feel warm fur. And that was when it hit me. In my old flat, I would have wandered into the kitchen and found other humans, but nobody was about. I gave up on sleep and I stared out of the window and listened to sirens, and eventually drifted off at 3am. I woke up two hours later, and I reached for my dog again. I even called him, that time, wondering where he was. I’ve never done that before. He obviously wasn’t going to be there. But I nearly cried. If I hadn’t fallen back to sleep, I probably would have.

This morning I woke up to the same awesome view I fell asleep staring at. I said good morning to my dog, and reached for him again, this time stopping before I grabbed at thin air, realising before reality hit that he was not there, and craving the company of something, somebody. Anybody, really. I started unpacking the rest of my stuff and listened to back-to-back Jenna&Julien podcasts all morning. It filled the silence. They made me laugh out loud. I looked out of the window (something I find myself doing an awful lot, even as I type this) and saw a running club or a park run go past in Mile End Park. It made me smile so much, to watch others running. It also really made me want to run.

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Top left: what the room looked like the first time I walked into it (after I’d dumped my bag). Top right: The walk I’m used to seeing as I walk towards my Whitechapel lectures. The big blue building is the hospital I live in a lot. There’s a teeny tiny red dot on top of it which is the air ambulance. Bottom left: What I could see as I laid in bed. Bottom right: After I’d finished unpacking the chaos and tidied up this morning. 

I discovered that I can see the O2 arena (on the other side of the river). I then sat for ages watching planes take off from London City Airport, before they turned (each one at the same point) and flew straight at me, and then over the uni campus behind me. On campus I used to try and work out where the airport was as the huge low-flying planes roared overhead. Now I know, which is kind of cool.

I ate cold pizza all morning and panicked that I couldn’t find my Oyster card. And I had a small unhelpful train of thought which shall get its own blog post shortly. I messaged My Fellow Third Wheel, and spent hours laying on my bed, staring at Canary Wharf and helping him with a problem he has right now. He told me I was helping when I wasn’t actually sure whether I was or not, and I felt a little better, I guess. Sixth From Friend’s Girlfriend messaged me, having just moved into uni, and seemed to have already decided that she couldn’t have any form of social life at all and had to shut herself away and work all the time. I spent a while fixing that situation – talking to her always reminds me how young 17 really is. I was lonely, so I messaged a few people, including my godfather, asking if they wanted to meet up. I think I might ask Aunty Godmother & her family if I can go and stay with them again.

I got ready (by that, I mean, I threw on clean clothes, the shower can wait) in preparation to meet Uni Pal, to then find that she would be delayed by three hours to our meeting because… wait for it… somebody stole her mum’s numberplate… while her car was parked on their driveway! Who even steals a numberplate?! We’re still trying to figure this out.

I’d noticed that my shirt was very difficult to button up (I had to pull it together really hard and struggled to get the buttons together… Usually this shirt is baggy over my flat stomach) and was almost bursting at the seams, but it wasn’t until I finally knew Uni Pal was almost home in London that I put on my shoes. I wear running shoes that are basically super thick socks with a sole attached (wearing running shoes was my compromise last year at uni when I wanted to run so badly, but couldn’t. I put on running shoes and it made me feel a little better. I now practically live in them). They are stretchy, they can’t be too small (especially not on my feet, which are so narrow and thin that I can’t find strapless shoes that actually stay on them). And yet, I couldn’t get them on my feet. It was at this point that I stopped to look at myself. Moving in yesterday, my abdomen had swelled a little over the course of the afternoon as the strain of lifting boxes irritated my body. Today, it had taken the swelling to the extreme. From literally where my sternum ended, my stomach bulged further forward than my boobs. I couldn’t find a single item of clothing that fit. I realised the wheeze and odd feeling in my airway that I’d been brushing off all morning was probably also related to this, because it had a very specific feel that I suddenly realised I recognised. And then I looked at my feet. Or at least, two puffy things that used to be my feet.

I couldn’t be bothered to have a defective body today, so I wrestled my shoes on, and stepped out into the city that stole my heart when I was about 14. My legs seared with pain as blood pooled and my calves cramped. My feet felt tight. I coughed and wheezed. But it was heaven. It was what I needed, to move, to get outside. I was not going to have a defective body, and even if it insisted on being defective, I wasn’t going to give it the satisfaction of acknowledging it.

I saw huddles of freshers stood at the traffic lights, waiting with no idea that they could cross safely in the absence of the green man as long as the cyclist’s traffic light was still red (means you still have time to cross). I felt at home, with a podcast still in my ear, and familiar sights surrounding me, I felt like I was home. My room is nice, but everything in it, including the room itself, feels foreign to me. It doesn’t feel like mine yet. It feels like I’ve put all my stuff in somebody else’s space. But Mile End… It was like a comfort blanket of sights.

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Top left: My desk area. Top middle: The district line at Mile End station. Top right: waiting for Uni Pal by Charing X station. Bottom left: Walking past trafalgar square and Nelson’s column. Bottom Middle: China town, heading back to Leicester square. Bottom right: Heading home after a nice afternoon. Embankment station with the London eye in view. 

We went from Charing Cross to The Strand, and walked from there past Trafalgar Square and the National Gallery to Leicester Square, where we wandered past all the police and the fountain to stroll along/ through Piccadilly Circus. We walked on to an Irish bar in China Town, but had just missed the end of the gaelic football final Uni Pal wanted to see. I bought us a couple of drinks (I ad non-alcoholic, because I figured my body was already annoyed enough). Uni Pal then took me to a really posh French bakery in Covent Garden. We sat and I ate an apple puff pastry, and a biscuit that was bigger than my face. As we walked back along the Strand to get to the underground, we passed a sight that almost made Uni Pal cry, and almost broke my heart.

A line, about thirty metres long. Some people in suits, most looking completely normal, just like us. Some neat, some holding guitars. Some were wheeling suitcases. Some were scruffy. Some were young, old, attractive. Some looked just like us, like they could have walked right off of a uni campus. They were all queueing for a van serving soup. They were all homeless. And most of them, had I passed them in the street, I wouldn’t have thought were homeless at all. I wanted to give them all my money. I wanted to cross the road into the fast food restaurant and buy all the food I could afford and hand it out. But I had no money left. And until my student loan payment hits, I can’t get more. People judge the homeless, but there was a man stood in a very expensive suit… And it just showed that it could be any of us. At any point.

Less than forty metres from the back of the line was a bank where you can’t open an account unless you have £100,000. Uni Pal said you usually pay it in cash (she knows these things). I hated society right there. I hated the world for walking on by, for the looks of disgust people were giving at their fellow human beings. The only thing I felt when I looked at them was an overwhelming desire to bring them all home with me and give them a warm, safe place to sleep. People even spat. At other humans… I have no words…

If my health stays good enough, I think I will find a local soup kitchen and volunteer. Normally when I see people living on the streets, I buy food (usually hot food, if I can find it, but at least a sandwich) and a drink (also usually hot) and ask if they would like it. I’m aware that they are people, with pride, and I never mean to be condescending. Some refuse, but most take up the offer. A lot of these people cry. I sat down with one guy once, and he told me all about how he’d become homeless. I always carried spare food after that. There are plenty of people living on the streets in London, everywhere, especially in the better areas (e.g. Holborn). I find it easier just to leave an apple or something next to the people that are sleeping, I’m kind of shy and I prefer not to have to face the awkwardness of watching their reaction. But anyway…

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Left: Home. The view from the other end of my corridor (at my end you can see the Olympic park and stuff) this end you can see the Gherkin and that part of the London Skyline. Top right: Piccadilly Circus. Middle Right: The apple pastry and giant biscuit I ate (it didn’t even fit on the plate!) Bottom right: A lonely dinner for one at my desk in front of my favourite photos that I’ve taken over the summer (YouTube eventually became my dinner companion – Roman Atwood this time).

I’m not going to lie, I feel so, so lonely here. I like to be around people. I want to be around anything living. I might go swimming tomorrow, or for a walk. And I’m going to ask if I can go to Aunty Godmother’s house. I have people to meet up with for the rest of the week, but even then that’s only for a couple of hours at a time. I don’t like being alone. Well, I do, sometimes. But I like to have the choice. I don’t like having no option. I am so lucky to have a place to live, especially such an amazingly nice one, but I feel so guilty about the financial impact this is having on my family.

Talking of family, my dad drove up here to drop off my stuff, and he didn’t even want to come in and see my room. My mum told him to say goodbye to me and he just shut the boot and went to get in the car. She called him again and he said he hadn’t heard. He was going to leave without saying goodbye. And that said it all to me. I couldn’t even look at him as he stood a couple of metres away and said the word goodbye. It stung to matter that little. My mum told me off for looking at the floor, but I was looking at where he made me feel I belonged, and I was trying to to crumple into a million pieces and lay in the gutter beside me forever. I won’t miss moments like that.

But being so alone is bad for my mental health. I feel like I’ve moved into the place where I’m going to end it all. Genuinely. I think living here is going to kill me. All I’ve wanted is some space to myself, but not to be in my own bubble shut off from the world. I’ve walked around the communal areas and there’s still nobody. Most of the rooms on this floor are still empty. I’m so lucky to be here. It just isn’t good for me. Sometimes the things we want, and the things that make us happy, are also the worst things for us.

But I am in love with this view. In a city of millions of people, I feel very alone right now. I can’t wait for my course to start. I can’t wait for My Fellow Third Wheel and my little brother and my nephew to come and stay (each at different times). I can’t wait to try out for the swimming society.

There’s just a week between me and that.

And I rally don’t know what to do with it (there may be many more equally long and equally awful posts)

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It was worth it for this picture that I took from the window at the end of my bed last night though, wasn’t it? This is a fraction of the view I look out at. It’s Canary Wharf in the mist. To the left of it there’s a cluster of red lights, that’s the O2 arena, and to the left of that is a tower block – the planes from London City Airport (which is further to the left) fly past this tower block and then turn and fly right towards my building!

Thanks for reading. I mean it. I don’t know why you read this far, but thank you so much. Means a lot. (I also love that you guys refer to uni as home in the comments you leave. My family refer t Kent as my home, and it doesn’t feel like it at all. It makes me smile when other people call London my home because… It is).

Back to YouTube I go! (My data is going to run out soon I swear)

No way but through thankful.

 

It Meant The World (Part 2)

I hadn’t thought of anything. Until last night. As I lay unable to sleep, my thoughts caught up with me. And I just… broke down. I cried. It hit me from nowhere, the feeling. I wrote notes, and I cried as I wrote them, and they weren’t to my family, but they were to people who felt like family, to the only two people I can talk to out loud but can’t talk to again. they were notes that said thank you and sorry, except thank you wasn’t big enough and sorry wasn’t sorry enough to express how I felt. The only words that said what I wanted them to were goodbye and I can’t cope alone.

It was all about/ triggered by my acommodation situation. I didn’t want to live where I’m going to live because it is lovely but as a result it is far, far too expensive for my family to afford, and we don’t have money to spare. Also, they aren’t flats, it’s just a corridor of rooms on each floor, self sufficient bubbles. And I withdraw. I never mean to, I just do. When things get tough, I push everyone away, I try to protect them and I feel like too much of a bother and a burden to reach out and pull them back. I retreat. I fall into this abyss, and I don’t know how to cope eventually, and I consider stupid stuff and I don’t know what to turn to or what to do. A few times, I end up drinking heavily to medicate the emotional pain, to deaden my mind until it cannot think or feel. Because when my dog isn’t there, there’s nobody to talk to. Uni parents are a no-go zone, and so I just destroy myself. My worst time was in late November last year, when the uni tried to push me to leave and I was drunk for a week, downing a bottle of cider until I was dizzy and tipsy enough to get out of the bed and face the day without having to feel the ache of such intense despair. And I never see it coming. There is never a here it comes again” or an “I haven’t left my room in a while I should probably do that or an I should talk to someone and reach out because I need help now I can’t carry the weight of this situation on my own because I’m going to break down. There is just a how did I get here again? and then a what am I doing? and then a but I don’t know what else to do, how else to cope other than to end it all… If I did that, maybe I should do it in the shower so that I’m easier to clean up. And then somehow I pop out of it, usually after a walk by the Thames (many times with the assistance of a uni parent. Those guys genuinely kept me alive).

I got annoyed that somebody had put me in a situation that forced me to live there, was frustrated at myself for letting… Anyway, it just isn’t going to be good for my mental state. I’m scared of the isolation and the loneliness. I didn’t want that for myself, I had avoided that for myself and made plans early so I wouldn’t end up here. Being let down is the one thing I don’t know how to get over. It hurts. I am trying to overlook it, but I still don’t even think the other person knows what a huge impact they had on my life with the way they handled things. I almost couldn’t go back to university because I can’t live with strangers (my doctors said to stick with people who know about my health), I’d turned down everyone else’s offers, and it was too late. So I cried over where I’m going to live. I sobbed so hard I couldn’t breathe and my nose bled. I roared silently into the darkness of the hotel room, until my mum woke up and told me the light from my phone screen was disturbing her. I’d been writing goodbye notes, I don’t know where I was going, I just decided it was time to go. And I carried on crying, but sat in the bathroom, messaging Uni Pal who seemed to think that it was as simple as just being tough and not withdrawing. It isn’t. I’m too pathetic. I shall post about this some other time. It just worried me that even in the best times of my life thoughts to end it all can spring from nowhere. There’s a D word that I can’t mention because of the stigma even my own mother attaches to it. She tells me it’s mind over matter, but it’s by far the biggest threat to my life I feel. It’s the biggest threat to my feeling of living. It is crippling at the best of times.

Today I woke up at 8am (after my alarm had been going off for an hour – I’d ended up catching up on a bunch of Roman Atwood vlogs when I FINALLY managed to get an appallingly slow internet connection on my phone). I put on my dressing gown and complimentary flip-flops, and walked down to the pool. I swam 20 lengths. 20. It hurt in the end, and I pushed through the hurt, because it wasn’t agony, just a little ache in the top of my arms. And everything felt ok. Because that is what exercise does for me. It makes it all ok.

We went to breakfast, packed the room, took many diversions to avoid many accidents on the way home (and each one made me imagine why they’d had to close an entire motorway, or why three accidents had happened within two miles… and I felt worried for people I’ve never met)… We stopped at Ikea and grabbed some bits for uni, and a book case for the spare room my nephew sleeps in. And then we got back to my family’s home. And my dog went nuts. He ran around, he jumped on me, he wouldn’t leave my side at all.

And then my dad and brother got in. That was almost five hours ago. My “dad” hasn’t said a single word to me. Not one. Not even hello. I’m not starting a conversation to have my head bitten up or feel like a piece of crap because he moodily shoots me a sarcastic and blunt response. I’m kind of intrigued to see how long it is before he will even acknowledge the presence of something he hates so much. My brother hugged me. My nephew got in with my big sister. My dad and her had animated, happy conversation. She spoke to everyone and only said a few words to me. My nephew was very rude and offish with his tone. I realised this family will never feel like mine, and that this house will never feel like home. My heart sank and I felt invisible and pushed out. My nephew was rude to my little brother, who came to me about it. And I was kind of like if you’re going to be like that, get out of OUR house. My nephew walked the dog with me a couple of times before we went away and it was so nice to walk along chatting with him. But today he was rude and if he was anyone else I’d have had nothing more to do with him. He walked into the kitchen and talked about nothing other than himself and how great he is doing at everything. I asked how he was as soon as he walked in and he didn’t ask a single thing about me. I’d spent last night crying that I didn’t want to leave. But now I remember what I’ve spent so long wanting to run from. I don’t ever want to live here again. Which is an improvement, because last night, I didn’t want to live at all.

I remembered why I’ve been so desperate to go back to uni, what I’ve missed. In a way I haven’t wanted to go to uni, I’ve just wanted to be away from this environment that poisons my mind against itself and is toxic to my self esteem. There was no shouting or anything, there didn’t have to be. Silence hurt more. Ignorance hurt more.

I felt so detached from everything that I didn’t eat dinner with them. I went to sit down at the table in the space I’ve sat at since the kitchen was built, and my nephew was sat there in my seat. He sits there now. I am being pushed out of this house, and I haven’t ever felt part of my dad’s family. They don’t include me. I’m not included in the sister selfies, I cannot compete with my nephew or my brother, with their blood, for their affection or attention. I am often left out and often feel left out. I didn’t want to face that in the house I grew up in, when I already felt like it wasn’t my home before. I ate my dinner alone in the dining room, watching Lance Steward vlog to keep me company (during my loneliest times at uni and the summer beforehand when I was bed bound and missed months of school, I watched Julien Solomita vlogs and they made me feel so much less alone. Over the year I found Roman Atwood vlogs, which I also watch daily at uni, and among many other personalities, I then discovered Lance Stewart). I got told off for eating my dinner separately. I got told off by my mum when I said that I wasn’t happy here. She doesn’t ever want me to talk to her about family stuff because she seems to be stuck in denial and just shuts it all out, but then she shouts so much if I talk to anyone else and I don’t know where to turn.

Breaking news: after four and a half hours of being in the house with him, my dad finally spoke to me. He said five words: can you see the TV? That’s it. But I’ll take it. It made me pathetically happy, which angered me at myself. I tonight considered changing my name back to the one my mum and I had before she met dad and they had my little brother. I don’t feel part of my dad’s family, he makes me hate myself and I’m convinced he hates me mostly because I don’t share his blood but also because I’m a sub-standard person, and suddenly I just didn’t want to associate myself with that – with a family that never has or will feel like mine. I loved them so much, and I just never felt loved back. Anyway.

My mum and I are spending the day together tomorrow. We’ve been arguing rather a lot and I exasperate her with just how I am… But we’re getting along so much better than we have done, I feel. She’s so relaxed now that she’s quit her job. Her moods are less changeful. She calms down more quickly.

When I was little, having a dad, having a family… It meant the world. It still does. My dad just doesn’t treat me like he treats his daughters and my little brother, there is a great chasm between me and them, one that he won’t even look at, let alone cross. I call him dad. I don’t feel like… Other family members from my mum’s side of the family have made comment on the fact that I am treated differently by him… (Yeah I can’t say it. I can’t say that I feel like I don’t have a… That… doesn’t feel like my…).

OH NO I AM MISSING The Last Leg (such an awesome tv show). I have to go and… I have to go.

No way but through.

Finally!

Over the past few days I’ve been thinking about where I was a year ago. Mostly because the internet is full of teenagers posting about going to university and their excitements and fears in all sorts of blog posts and articles, but also because I’ve been finding things. One of these things was a notebook, and in that notebook I’d kept a diary/ drafted all my blog posts last summer. I found that notebook exactly a year after I wrote about going to have surgery to insert Reginald into my chest. A year ago today, I’d just got over recovering from that surgery, and the wound had finally stopped bleeding at every given opportunity. I had very, very short hair (because due to health reasons and a drug that my hair follicles clearly had an argument with, it had all fallen out earlier in the year). I looked like a toilet brush, or at a push, a boy who had never even heard of a comb. I’d had almost shoulder length, thick curls… and at that stage my hair was about 1cm long. My sister took me out to buy a load of headbands that summer, and some of them stretched out to look like bandanas which disguised my issue nicely. Now, I look in the mirror, and my hair is finally long enough to tie up again. This is only something I’ve been able to do in the last month or so – I can get it into a high ponytail instead of my old familiar low ponytail (if it isn’t a high ponytail then some of my hair manages to escape)… but I’ve come so far since then. And I’ve been through so much. So. Much. Uni certainly wasn’t as supportive as I hoped it would (or anywhere near needed it to) be. But this isn’t a big long ramble about where I’ve been.

Good things are happening now…

I finally got my uni timetable last night. You’d have to understand how much I love and have missed my degree in order to appreciate how stupidly excited I became at just the sight of a timetable full of lectures. I couldn’t stop smiling. I wanted to be back at uni even more than I have done for the past EVER, and appeased this urge by scrawling the lectures into my academic diary in some sort of feeble attempt to convince myself that I will be thoroughly organised throughout this year of study.

My godfather called me out of the blue on his way home from work to see if I was feeling any better after I bailed on plans to meet with him and his two young daughters the other day (who apparently kept asking if they could visit me if I went to hospital, and asked over and over where I was… I felt so guilty!) He treats me like I’m his own kid, and when I was a toddler he was the closest thing I ever had to a dad. He’s known me since I was a baby bump, and even my grandparents acknowledge the fact that he is practiacally a parent to me. It was so awesome to be called “sweetie” and “sweetheart” and “darling” and told “love you lots” at the end of the phonecall. Like… Damn. My heart flew. Those words were like a comfort blanket. When he sees me, he actually hugs me. This is something my dad does with my little brother, and my sisters, but never me. So it’s super nice when my godfather just pulls me into a cuddle and sits chatting away like I’m his first born. Hearing from him was so nice. I felt all super loved and wanted and he wasn’t irritated by the inconvenience that my health had caused. He hasn’t had time to grow sick of it yet.

After this point, I woke up at 10pm. I’d fallen asleep on the sofa and been wiped out for who knows how long. I noticed that a comment had been left on my last blog post, and read the longest (and possibly nicest) comment anyone has ever left on this blog. I’m mentioning it here just so that person knows quite how much it meant to me. It did a lot in getting through to the stubborn old part of me that I can’t override, the bit that puts itself down without anyone else having to prompt it, and goes into complete overdrive, spiralling me into guilt and self hatred and shame at any given opportunity. I felt like less of a rubbish human being, and more like my feelings (back when I was actually capable of them) had perhaps been justified. There wasn’t too much time to linger on this though, because I then woke up enough to note that I felt unmistakably acidotic. My blood pH was dropping again and my body was in full revolt at the idea of this. (I get no symptoms of acidosis any more apart from, apparently, an overwhelming tiredness when I get close to the point of no return without urgent medical attention). I genuinely thought to myself Oh heeeelllllllllllll NO. Severe acidosis (or acidosis of any severity) would mean that I couldn’t have the surgery I’m scheduled to have tomorrow, and also that I wouldn’t be able to swim today (my brain didn’t seem too fussed that it is a life threatening medical emergency that needs only a few hours to ruin a life).

I did a HUGE injection and gave in to the sleep again. I just about settled things down, but when I woke up in the night I could taste the unmistakable taste of the acidic chemicals on my tongue – they were in such high concentrations in my blood that my body had started exhaling them in my breath… This isn’t unusual for me, I can frequently taste this taste, but never this strong unless I have a serious problem. Even toothpaste wouldn’t take the taste away. I drank litres and litres and it wouldn’t take the thirst away. I peed out more than I could put in because my body was just trying to flush everything out of my blood… but I am still retaining a ridiculous amount of water, and eventually got to the stage where I could feel it on my lungs again and began coughing for England instead. I really need to find some diuretics. I’ve now gained over 1 stone in weight over the past few days.

I woke up this morning with the start of a cold. The voice that came out of my mouth didn’t sound like my own. It was actually very refreshing to be “health person ill” for a change. A cold won’t keep me down… it will give me a chest infection and outrage my health hiccups until they hiccup and start a chain reaction that goes on for months… but the cold itself is… maybe not so harmless actually, now that I put it like that.

I slept my morning away on the sofa, fully clothed and ready to go swimming… But everybody (including Uni Pal, who is usually the number one supporter of my ideas) said do NOT swim. I still considered it for a while, but I really want this surgery to go ahead, mostly just so I don’t have to hurt so much any more and can get some sleep, so… I let my body call the shots just one more time.

I was really not hungry (VERY unlike me) so I waked to the shops and bought some more appetising food to tempt myself. I didn’t enjoy it, but it is now all happily sat in my stomach, so at least that’s something. As I went to walk into the supermarket, a woman’s voice stopped me,

“Excuse me!” I turned around to see my first ever swimming coach. I went to say hi. She gave me a stranger’s stare, looking at me blankly, not even a hint of recognition in her eye. “Your backpack is open” I looked. It was not zipped up at all, and I was pretty alarmed that I’d left the house like that. But my heart also sunk a little. It has been so long since I swam for that club and passed her teaching the younger kids, that she doesn’t even recognise my face any more. It stung.

I came back exhausted, but I wanted to work more towards my challenge for the month, so I walked my dog just over 2km, and actually thought I was going to pass out 20 minutes in. I couldn’t breathe, my muscles were screaming. I got home and my lips were blue. So… I went uni shopping (with my 16 year old nephew, just in case) and bought some stationary with my nephew, buying some potatoes for dinner (because all my dad can cook is sausages and potato) and getting a door key cut for my nephew in the same trip.

No idea why I bothered to write that, I’m tired, slightly tipsy (alcohol was not my plan for the night before surgery, but hey, this was not my plan for this week so…)

On the subject of surgery, there is awesome news about how I’m going to get there. For the past week neither of my parents have been able to take me to my (minor) surgery. They both had better things to do, and I don’t blame them for valuing their happiness over a crappy surgery to be honest, especially given the short notice. My mum’s solution was to tell me to go and stay with Aunty Godmother and get the train up from there (which would take almost an hour) because there was no way my dad would give me a lift. When that wasn’t a  workable plan, it was suggested that I ask among my friends for a place to stay the night before, and see if any of them were around. Last night, somehow, I managed to talk myself into a lift. My dad is going to drive me to London (right past where I will be living again in under two weeks, and past uni/ heaven on earth!!! I CANNOT WAIT) and drop me off near the hospital. He isn’t stopping. He isn’t getting out of the car. He’s made it clear that he is literally taking me there and turning straight round. But I CAN GET TO MY SURGERY NOW and that takes away a significant dilemma. I do need someone to stay with me there and be with me when I leave, but he said he will pick me up… I hope that means he will park up and collect me. I don’t mind that nobody is going to be there to sit with me after Uni Pal leaves… She was asked to get into work for 7am and told them no, she’ll leave me at 9. I felt awful and told her to just go to work. She refused. I found another reason to call her awesome, and I think at that point I may have downed one of the ciders that my parents brought back from France.

But yeah. My friends aren’t impressed at how my parents have handled the surgery situation, but it honestly isn’t their fault. They have lives, and their commitments may not seem big or important, but it is important to me that they get a break from me ruining their lives (as they will deny now but shout when they are angry or frustrated at my health… actually not my dad, because we don’t actually talk unless he’s telling me off… but yeah…). I can’t even imagine how tough this is on them, but they don’t look at me like they look at my little brother. I see hurt in my mum’s eyes. She gets defensive and bitter and takes everything to heart when I don’t look happy. One minute she wants nothing more to do with anything and the next she’s turning up at my next appointment and kicking off majorly when I ask to see that doctor in private… But it’s because my health has torn this family, and the lovely people that make it up… into shreds.

Ok no wait no. There is a lot of family stuff, none of which will ever be said anywhere. My dad hates me. He makes it obvious with his behaviour and it makes me hate me too. Anyway. Surgery and all that jazz… Yeah… End of post.

See you on the other side of a general anaesthetic, if not before (I seem to post when I’m bored, and waiting for surgery is boring).

Letting Loose, Coming Home, Shaking Off The Shackles Of My Health Hiccups

The Olympics are a rough deal to watch when you are incapable of a human achievement, let alone a superhuman one. I told myself I wouldn’t post about why, I told myself I wouldn’t do the whole inevitable Olympic blog post, and yet here it is. Because I’ve given up trying to force myself into the box of my limitations and my capabilities, and I sort of stepped back after my last exam, as I walked out of that exam room, and mentally said to my thoughts, and to my sport hungry mind,

Go on then. Let loose. Go home. Chase smiles.

Because since the Olympic coverage has started, suppressing that part of me, and holding that back, has been difficult.

Last time the Olympics were on, I didn’t watch much of the sport. I was in hospital. I had spent four years looking forward to a home Olympics, and when they finally arrived I was in hospital going through a pretty rough time. I stopped caring about everything. The Olympics that year became a background noise to the death of who I was; national success running parallel to personal losses and struggles and losing everything I ever had to my health. I held an Olympic torch, there were newspaper clippings of Olympians I had looked up to for years on the walls of my hospital room… But there was no magic like there had been when the Beijing Olympics were on a TV screen in front of my 12 year old self. The nurses and I piled into an empty side room and we watched the opening ceremony while we ate takeaway and laughed and had a mini party, but I felt dead inside. It was the lowest time of my life. I had never wanted everything to end so badly.

I thought the Olympics were dead to me after that, I thought they would forever remind me of the things I still have flashbacks to, the things that changed who I am irreversibly. And then I turned on the TV to the first events of the Rio Olympics and 12 year old me came bursting onto the scene out of nowhere, hungry for sport, addicted to the Olympic coverage, smiling and shouting at the screen, punching the air when people won… Determined to get up and do something all of a sudden, inspired not only by the athletes, but by the ex-athletes who are commentators on the BBC this year – people I grew up idolising – Dame Rebecca Adlington, and someone who was used as an example to me when I was just a kid and was worried that my health might hold me back – Sir Steve Redgrave.

It’s often difficult for me to accept the severity of some of the situations I end up in. I deliberately switch off this knowledge and forget to turn it back on because it allows me to breathe, and sleep and just… be. There’s stuff that it is obvious to acknowledge as a serious hiccup. But I overlook the one thing that society seems to also think is relatively harmless. Since I was a kid I never thought diabetes was anything to worry too much about. Injections and blood tests were just normal to me, and I knew diabetes could kill, I just never made the link that it could ever kill me. And then it nearly did. Complicated by other extremely complex health factors and easily upset by other health hiccups, it nearly took my life many more times, throwing me into emergencies which needed only hours (and sometimes not even that) to take a life. And other health hiccups roared alongside it. Other stuff was putting me in intensive care units and hospital wards. And every heart hiccup, every infection, every teeny tiny extra physical stress my body was put under, every hormonal change… Would massively upset things in a way that, if my pancreas would actually fully function, I would never have experienced. My diabetes would start to endanger my life alongside these issues, massively complicating them or sometimes putting my life at greater risk than the things that put me in hospital in the first place. Either way, in combination, little things had a whole new way to make me very sick, and major health hiccups became even more major. I never really got to a stage where I was scared of that. But it started to make me appreciate the severity of that particular situation, of something I never remember living without, something I was telling people I had before I was even old enough to understand what it was.

I realised that the ridiculously dramatic people who said that diabetes ruled their life and they were scared they were going to die, and made huge great deals about their messed up pancreases… Maybe had a teeny tiny slight point. I still thought some of that stuff can be a bit over the top and hyperbolised, but I realised that “the ‘betes” could kill, and wreck lives. I started to see an increasing number of articles about children who had been killed or had severe brain damage as a result of DKA (diabetic ketoacidosis). I met people in hospital who had lost feet and legs to the condition. My neurologist, upon noting that I have no reflexes, explained that diabetes commonly affects the nervous system, causing a loss of sensation in the hands, arms, feet and lower legs, and can cause the autonomic nervous system (which controls breathing, heart rate… Everything you don’t consciously think about) to fail. I’d had damage to the back of my retinas due to diabetes and I knew it was the leading cause of blindness in adults. It is also a common cause of kidney failure and arterial disease… “The ‘betes” was not some quirk that made me who I am. It wasn’t normal life with a few injections thrown in. It was something I had massively underestimated. It was something that, in my opinion, had not changed my life in any negative way since diagnosis (even though it had at times put me in hospital for weeks and weeks, and left me in the ICU a few times) but it was something that had an alarming potential to do so.

As a kid I hadn’t understood that. By the time I was old enough to hear those things, they hadn’t happened to me and it was easy to assume they never would. And then I was twelve, and it was the first time they saw background changes to my retina (background retinopathy) and my parents didn’t think I was bothered, but I sat in the car trying not to cry and I wanted to rip out my eyes. But type 1 diabetes was still not something I worried about. And then it got out of control. This year it was one of the front-runners in the race to try and take my life. Sometimes it was top, sometimes it was no bother at all, sometimes it would sneak up on whatever (health hiccup/ emergency/ surgery/ treatment) had put me in hospital and try to steal the gold medal. It made every fight harder. And it went from being my friend to being my enemy. Respect your diabetes and it will respect you, we’d always been told. And I did, I suddenly respected it more than ever, because it was threatening my life. And there were times when that alone, this thing I’d lived with since I was a toddler, this ting I’d hidden from embarrassment but never felt was dangerous, this thing that people think means you can’t eat sweets or were fat… Made me wonder how on earth I would manage. There were times when it made doctors ask the same.

(Obesity is associated with, but not the cause of, type 2 diabetes, which is a completely different condition to type 1 diabetes. Type 1 commonly occurs in younger people and involves the body destroying the cells of the pancreas which produce insulin – it cannot be controlled with diet alone, as without injections of replacement insulin the body cannot get glucose into cells to be converted to energy, and death results. Type 2 involves an insufficient production of insulin to meet demand, or an adequate production of insulin but an insufficient response from cells – it can be controlled by diet alone in some cases, most commonly with a combination of diet and pills which make the cells less resistant to insulin, and sometimes with injections in order to top up insulin levels to those that the body requires. Just to clear that one up).

So now I want to mention Sir Steve Redgrave again. All my life I had been active and sporty, which involves much tighter monitoring of diabetes because physical activity and adrenaline majorly interfere with things. But anyway, all my life I had been sporty, and sport had got me through. And I remember being told frequently that the most successful Olympian in British history (now third most, after Sir Chris Hoy and Sir Bradley Wiggins) had diabetes. Three years before winning his fifth Olympic gold medal, he was diagnosed with type 2 diabetes. Apparently he initially managed it with dietary changes, but obviously sport requires a lot of carbohydrate and sugar for energy, and he moved onto injections (this is what I was told, I don’t know if it is true). Here was this guy, this national hero, doing 8-10 injections a day, and he’d kicked Olympian butt just as well as he had before his diagnosis.

I was painfully shy about my diabetes, I still hide it. And when my friends would cringe and scream and run when I did injections in front of them in the way that people do at the age we were, the knowledge that a sportsperson had to do the same thing took the sting out of my embarrassment. Because I looked up to Sir Steve Redgrave (at that stage an Olympic legend rather than a competing Olympian) and in my child’s eyes he made me believe that diabetes was a super power – and I felt secretly special with the superhero costume of its presence beneath my school shirt. My health hiccups do kind of feel like that sometimes, like superhero costumes that I hide beneath my outward appearance – they’ve forced me to find a strength in myself that I never otherwise would have had reason to use, and nobody has any idea that they are there sometimes, or the complications they throw into my lifer (well now I have an idea for an entire different post).

Recently diabetes was not a superpower, it was something I wanted to run from, something that was ruining me. Something that was becoming too complex to manage. I stopped feeling like I was wearing superhero costumes and began to feel like I was wearing shackles. And then I started swimming. And then I finished my final exam yesterday (an hour before the exam my revision efforts totalled at having read briefly through three out of 22 lectures while worrying about how little motivation I had to study. I then mild-panic revised outside of the exam room) and walked into the place of my dreams – my university campus – and I let my mind race off to thoughts of sport, because there was nothing else to distract my attention from that any more, no commitment to trump it, nothing to lose.

And when I turned on the TV and saw Steve  Redgrave stood there with a microphone, I remembered what he had achieved with a couple of health hiccups of his own, on of which I could relate to, and just like when I was a kid, I felt a little empowered. I was sat in the living room of Aunty Cousin’s house (I am now living with them for the next week or more while my family are on holiday and my health demands that I do not leave the country), and I sat and filled my notebook with random sport junk. Running stuff and swimming stuff and times and old warm up sets and just sport sport sport. I let my mind run. And the Olympics was the background to that, it was the driving force of that fresh ambition, fresh determination not to break a world  record or to even compete gain, but to be able to do what I used to, to be able to do sport without ending up in a heap on the floor.

And my mind ran home. Because home isn’t a place, it is a feeling, a mind-set. I dove into thoughts of doing whatever sport I am capable of, wallowed in the pool of that nostalgia. I am still paying the price for my swim the other day, it left me in bad shape and wheezing for an entire day afterwards. But I feel like I am home in so many more ways than that. Aunty Cousin and Uncle(her husband) treat me like I live here,, more than that – like I belong here. I feel welcome and accepted and not a bother at all. They talk to me like an adult and we end up in hysterics. Uncle(her husband) talks to his kids normally and he talks to me normally and we chat away and end up laughing and I’ve never had that with my dad, the man I call dad shouts and snaps and belittles me – he sulks and slams and stomps and makes me feel like I am the worst human on the planet. I’m not used to a dad figure treating me so nicely, and I found it so weird I commented about it to my fellow third wheel, who is super excited about meeting me at Canon Street station on Monday so I can take him wandering around London. He said that isn’t weird, it is how normal fathers behave. Whatever it is, it’s so bizarre to me that I almost recoil in wary surprise each time he’s so normal with me. Their dog is obsessed with me (he’s a black cocker-poo, which is a cocker spaniel crossed with a poodle) and he is adorable. I get along really well with their two daughters who are (just)14 and (almost) 10. Today the 14 year old and I (who message each other very often anyway, a) stood talking and laughing for ages (and I mean properly laughing to the point that neither of us could stand). She is so mature, and yet only 1 month older than my little brother. We walked to the high street together, a short way, and she commented on how thin I was, and how last year when we went on holiday I was really, really skinny. We strolled along and chatted and laughed and… I just feel like I belong with these guys. They make me feel like it is ok to be me, like I have nothing to be ashamed of, like I am worth being around. They haven’t moaned at me once. The only annoying thing is that nobody here will accept the money I am trying to give them to thank them, so I’m going to have to change tactic and buy them all something. I am so astounded at the way they are treating me that I just keep thanking them. I expected them to be as bothered by me as my family is, but they don’t treat me like I’m still 13 as my mum does (when she doesn’t seem to hate/ resent everything I do/ am/ represent), and they are almost making me feel like I’m no bother at all by completely counter-acting the thoughts in my mind that they don’t want me here. They finished decorating the second attic room just so I could sleep in it, and I treat this house like I live here because I feel that comfortable.

I am so happy to be here. It is such a relief and so… Opposite to being with my family. I look forward to being here for at least the next week (then I am going back to my family’s home and my fellow third wheel is coming to stay for a few days). I didn’t expect them to want me around due to my health. I’m really, really not well at the minute. I need to be in a hospital but I’m holding on and everything is still slipping. It is scary. If that exam hadn’t been taking place I would have and should have gone to a hospital for an emergency admission. For now I intend to hold on, I don’t want to worry these guys; Aunty Cousin has only just got back from taking me to get some local anaesthetic to numb the pain from my broken tooth (the temporary filling decided tonight was a fantastic time to fall out). It’s so awesome here. I’m in a better place than I have been for a while, and I didn’t expect that, but I’m very glad of the break.

I am no longer coming home to myself – I let loose, I let my mind wander to places I thought it would hurt to let it go… I came home. I am home. I feel like me again.