Inside The Ice

My normal isn’t normal, and my fine isn’t fine. My acceptable is not acceptable in any other body, and the state I walk around in would have most people in a heap on the floor.

But they don’t know that.

Today I feel like there is a giant rift between me and the rest of the world. My friends think that because I went to hospital, I’m better now. They think that because I was let out, I am fixed. Far from both. I woke up today in a state that, had I left it and not injected into a vein every 30-60 minutes for 5 hours, would have killed me within 3-4 hours. Maybe less.

I woke this morning knowing what was going on in my body, but with no idea how to stop it. I messaged My Fellow Third Wheel and tried to get out of bed, eventually succeeding after a couple of hours, but after a shower I gave up on the idea of leaving my room, and relented. I got back into bed and hoped I’d feel less awful sometime soon. I didn’t (my improvement had plateaued), so eventually I just had to get up and get on with it. Dizzy and spaced out to the point that my vision and hearing kept going, I got dressed. My heart was racing, my head ached, I felt like I was going to throw up and pass out all at the same time… I was home alone and had been locked in the house, so I climbed out of the dining room window and walked to the shopping centre behind where my family live.

“You look SO tired.” Were the first words My Fellow Third Wheel said when I met him in the shopping centre, and he gave me a huge hug. He told me that for someone who a few hours before had been struggling to leave the bed, I was an idiot to have climbed out of a window and dragged myself out to meet him, when he was going to my house anyway. We talked. I bought some stuff I needed to grab (food and drink and flash-cards for revision… and dog toys for my everything – a chocolate labrador), and he insisted on carrying my rucksack because he didn’t want me to carry heavy stuff. He’d offered to grab anything I wanted/needed on the way over to my house, but I don’t like to feel weak, so I wandered around on the verge of unconsciousness and decided to meet him there. He knows what I’m like. He’s kind of my limiting factor in a really good way, in that he stops me being an idiot.

I didn’t want to face the world today. I didn’t want to see people because I just felt so disconnected. Healthy people can’t possibly understand and it is unfair of me to expect them to. People who don’t have physical health problems can only try to imagine, and in their minds I guess they compare stuff to the flu or whatever else they’ve had experience of (which is natural, we always try to relate things to an experience we’ve had). In their minds being let out of hospital doesn’t mean that there’s not a lot more you can do and you’re going to have to play Russian roulette every day, it just  means that you’re all fixed. People were acting like I’m fine now, they were playing everything down and I was finally being realistic and no longer in denial, but they kinda shrugged off my reality as melodrama and told me I’m going to be fine and I’ll be better soon… and it made me feel ridiculous. It made me feel dramatic and pathetic and it made me feel… Alone. So, so, alone. So I withdrew. I stopped replying to everyone to save my emotional state. Everyone except My Fellow Third Wheel, who seems to possess some sort of magical power to make everything feel ok.

His was the only company I could tolerate, except I didn’t have to tolerate his presence, I enjoyed it. He knows me in a way few else do. I can just totally chill out around him, I don’t even have to change out of my pyjamas (obviously I did today because I went out in public) and we can just sit in silence together for ages sometimes and it’s good because we’re alone but not and together but not. I didn’t have to pretend to be something I wasn’t and yet… I still couldn’t let him in. I couldn’t let him see the mess that I am, I couldn’t open up, I couldn’t say that I wasn’t ok, that I needed him and damn it could he please be there. I didn’t know how to say any of those things, so I listened to him tell me about a girl he’s super close with who has been having a hard time at uni (so he’s going to stay with her this weekend, and over the Christmas break he’s going to do something with her every day to get her out and doing stuff). I opened up a little bit, nowhere near to the level I used to with my ex-uni parents, but more than anyone else. He’s so chilled out and logical and sensible, and he’s also ridiculously blunt. That helps. He helped. He listened, and he was all When was this? and Why am I only just hearing about this? and Why didn’t you call me?

And then he was all I spoke to you for half an hour the other day before you even told me you were in hospital. Why did I only find out you were there on the day you were leaving? I only found out you were even in hospital because a nurse spoke to you and when I asked what was going on you said where you were. 

I had no idea you were in such a state, you sounded so happy on the phone.

I do. At the moment I do. At the moment I don’t know how to talk to anyone, don’t know how to let them in. So I act happy. Or (more commonly) I just don’t say that I’m not. But he saw through that. He sees through that. I needed somebody to see through that and then not only to stop there but… To pull me out. He’s the only person right now who figured out how to pull me out. He’s the only person whose life is free enough of issues for him to have the capacity to truly take on mine. But… That’s why I didn’t tell him.

Because all I could think back at him was You’ve done enough. You’ve done so much. You’ve put up with so, so much of my crap. You sat by a hospital bed with me for days, you slept in waiting rooms in ICU, you bought me food and you lost sleep, you hugged me when I was scared and while I cried and when I lost my mind. You were at the other end of the phone right up until I went to uni and… then the thoughts came out loud

“I didn’t think you’d be there like that any more. I… I didn’t think I could go to you with stuff like that. I didn’t think you’d want to hear it. It isn’t fair.”

We sat on the sofa for hours and he showed me stuff on his phone. We laughed a lot, and I forgot. I forgot everything. We walked my floof (dog) through the woods. I was meant to walk him myself, but My Fellow Third Wheel didn’t want me wandering around alone, so he took the dog and walked with us in the freezing cold. In the middle of a field the three of us took a selfie together, and in that moment I was so calm and happy that I’m glad I captured it. We encountered a German Shepherd dog and instantly turned around. It wasn’t on the lead or muzzled and ran at everyone and everything barking and growling. It bit a dog in front of us and I freaked. My Fellow Third Wheel gave me the dog’s lead and told me “Don’t be scared, it’s alright. I’m here. I’ll stand between you and it.” That. Right there. Is a true pal. I felt safer. He did put himself between us and the dog as it charged at us over and over again growling. My dog walked away when I called him, but when the German Shepherd came near me, my dog started to growl and I got super scared there was going to be a dog fight. My Fellow Third Wheel took the dog lead back from me and walked on, kind of comforting me at the same time.

I only walked a short way home, as we parted ways so he could go and catch the bus home. We messaged for a while, and I told him to call me if ever he freaked out again (as he sometimes does, leading him to wander around the world at 2am). He made me promise to do the same. I asked him if he was sure too many times to count. I told him it wasn’t fair, I told him I didn’t want him to end up hating me. I told him that everybody I’d ever let be there had dropped me and walked away and that I didn’t want him to do that.

That’s the wrong attitude you sh*t

[…]

Just agree

Stop

Agree

[…]

U lil sh*t

He sent me messages like that, until eventually, after him going on and on and on, I put two letters

OK

And he celebrated and made me swear to stay true to that deal. The thing is, I said no because I was thinking of him, but all I wanted was to say YES, PLEASE BE THERE I CAN’T DO THIS AND I NEED SOMEONE AND PLEASE PLEASE JUST BE THERE. He knew that. He, like so many other friends, told me to stop thinking so much of him and consider myself for a second too. He said if he can’t deal with something, he’ll tell me. But I know what a burden all of this is. I know what a burden it is because I live it and it exhausts me. I don’t want to spread that or share that.

But I am so, so glad to know he’s there. It feels so great to know I’m not alone. He has chronic fatigue syndrome, so understands the health aspect of my life more than most. He gets things in a way most people can’t. My brain seems to like that. (My other friends have been amazing too, and they want to be there, but I don’t know how to tell them how to be or even how to ask, and they have no idea how to be there in a way that’s helpful. They think things are better now and that I’ve no reason to worry any more, no reason to stress about my health, and that makes me shut myself away from them. Because I feel misunderstood and I don’t want to keep having to say it out loud – reality).

My nurse phoned me up while I was still walking my dog (after a few months of not responding to any calls/emails/texts from any of my nurses/doctors/consultants I finally for some reason picked up the phone) and during our conversation she told me a treatment option that may help me a bit costs £580 and then £200 in regular instalments… She wanted me to deal with stuff. She wanted me to make phonically and text her numbers and go to my GP to get vials of medication and stuff… And then, had we been in an episode of Thomas The Tank Engine, this would have been how the script was written:

Nurse: How have you been doing, by the way?

Me (internally): HahahahahahahaNOPE

Me (out loud): Good

Narrator: Things were not good. 

 

Nobody has any idea just quite how badly, or how seriously unwell I am right now. They couldn’t comprehend it, and they don’t, even when I try to explain. I look normal to my friends now, but my “normal” is actually quite seriously unwell, and I feel awful in ways they couldn’t imagine. My “normal” would be their dying. It kind of saddens me that nobody notices that I look unwell now. It saddens me that that has become normal, and that people think that’s me looking well. I showed them a picture of me well the other day and they couldn’t believe it. I looked like a different person. There was flesh on my bones and so much more colour in my skin, and I didn’t look “anorexic when you’re not even anorexic” as My Fellow Third Wheel says. They think I’m fine. And I am so, so far from fine. They’re happy and relaxed and how do I ruin that? They think I’m out of the woods, but I’ve only just wandered in. They think I’m in less danger than I was before I went into hospital, they think all of that is gone. They say they know I’m unwell “but not as bad as before right?” And how could they ever, ever understand? They never will, and I hope they never have reason to because I never want them to be able to relate to and therefore properly understand this. My friends are being amazing. They are there and they are trying but I feel so, so alone emotionally.

But with My Fellow Third Wheel… I don’t have that. I feel like this mountaineer with an ice pick has just hacked through the ice to reach whatever of me is left inside of whatever of me wanders around. And he has no idea how grateful I am for that (I tried to tell him, I’m bad with words right now).

I should probably do some uni work. I should probably do something. But I’m too unwell to do anything. I just can’t. I’m too unwell to even try. I’m unwell enough to use the word unwell and that’s a word that makes me cringe. Usually I say I’m Tony (one of my friends said I’m like “Tony Stark” in that I shouldn’t actually be alive, so she always asks how Tony I am today) or how stable I am (another friend figured out that ok is something I’ll never really be and unwell is something I’d never call myself).

I know I need to go back to hospital.

And I can’t go back to hospital. My own mind will not let me go back. I’m still waking drenched in sweat and tears from the nightmares induced by this admission. I can’t. This morning I laid there knowing how close I was to kicking it (far closer than anyone should be when they wake up in the morning), and I just thought I can’t do this any more. I don’t know how to do this any more. And people will call me brave for carrying on. But they’re wrong. What other option is there? There is no option but to carry on. There is no option but to hurt and fear and struggle and just… Try. There is no other way. Either I’ll get through stuff, or I’ll die trying, but either way…

No way but through.

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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.

 

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).

The Message I Never Normally Send

“I have been so far from OK that all the money in the world could not have paid for my taxi fare back to OK.” – Me (well, my brain).

It took me a long time to figure out how to put my emotional state of the last few weeks into words. Which is great, because the person who received the message that contained that little analogy hasn’t messaged me for over a month, which left me plenty of time to find those words… and more of them followed.

But I’m guessing things were so good for you that you forgot about the friend who sat up until midnight with you and your amazing girlfriend to help you get through a rough patch, and spent hours on the phone?… Ouch [sixth form friend]. Ouch.”

I usually sit on feelings like this. I keep them inside until their flames give way to ashes, and the ashes fertilise the soil in which better thoughts can then grow. I am used to people letting me down and drifting away when the going gets tough. The things that break me scare them away. But this person doesn’t know the things that broke me. How could he? Since I stayed up until 4am dealing with the emotional aftermath of his controlling and manipulative behaviour towards his girlfriend, spent two days messaging and speaking on the phone to and sitting in front of him and his girlfriend to help them through a rough patch and get him to listen to her and realise how alarming his behaviour was (and also gave him details of a job because he’s just been fired, which he didn’t know about, but later applied to and got…) he hasn’t messaged me once. Many have called him self centred over the years, and usually I’m willing to overlook that, because I know what it is like not to have a friend when you need one… I know what it is like not to have a friend when you need one, because people like him taught me. It is always people who call themselves my “best friend”. It is always the people who know how difficult it is for me to trust. It is always the people who said they would always be there, that they weren’t like everyone else, the people that promised (even uni parents). And when I realised that, instead of just accepting it like usual, I suddenly just decided I wasn’t going to stand for that any more. I’m changing, at the moment. Things are up in the air. And this was something that needed to change.

Right now, my brain doesn’t care about much. I’m not feeling things, the filter between thought and speech has dissolved… so when I got a message from Sixth Form Friend and sent a screenshot of the notification to My Fellow Third Wheel (who told me not to even bother replying, and exclaimed that it had only taken A MONTH…) it didn’t take much encouragement for me to tell him what he has needed to hear for a long time. The above message tumbled out of my thumbs. And a load of excuses poured back at me. Something about him knowing I was talking to his girlfriend and he would just find out if I was ok through her. Except I haven’t talked to his girlfriend. She’s only 17 and very emotional, and I do not need emotion around me right now. I need calm. I need people who don’t react. She occasionally messaged me, maybe three or four times over the last month, to say hi. And I explained that I couldn’t construct conversations, because I genuinely haven’t known how to, and she understood that I was going through something and let it go. (Also, he knows me very well, and I have never ever talked about stuff, because I don’t. Even uni mum said this to me today – I talk so easily to her, but she’s seen my inability to talk to others).

I pointed out that he hadn’t even said “hi” since everything I’d done for them. And I hadn’t done all of that for them because I expected anything in return (they seemed to be under the illusion that I’d only given up two hours of my time… Even my Fellow Third Wheel remarked that it had been a lot more than that, because naturally I kept him up to speed), I wanted no thanks, I did it because I cared. Sixth Form Friend pointed out that I hadn’t said hi either. And My Fellow Third Wheel joined me in my stunned annoyance at this. (The stunned annoyance that swiftly gave way to me seeing that he had a good point, concluding that I am a lousy friend and don’t really deserve friends, and spiralling into a little pit of self loathing and guilt. But before that, the following thoughts fuelled my brief annoyance.)

Firstly: I didn’t say hi because I fell apart. I broke. I couldn’t talk at all. To anyone (My Fellow Third Wheel broke through the wall, as did Uni Pal – but I didn’t talk to them about anything, they were just there and refused not to be, and they refused to stop trying, and even talked on the phone and met up with me, and they didn’t react emotionally in front of me. But even their reactions and occasional optimism at times mildly irritated me, because it made me feel like they thought my reaction an overreaction and that I was entirely alone and misunderstood). I even stopped blogging for a few days. I cried. I was scarily/ extremely suicidal (until the idea of running again saved my butt). I pretty much had a breakdown. And he (as his girlfriend has for a while) would have known something was up if he’d bothered to say hi, because when I cannot compute, things are generally bad.

Secondly: I very often message first, and why should I? This one time when I was 17 and stuck in a paediatric ward, I used to message a few of my friends every day and say good morning and ask how their days were going. Their responses became streamlined to one word replies, and eventually they often didn’t bother to respond at all. But I kept messaging, because I was trying to let them know they still meant something to me, even if they didn’t visit when they said they would (or at all actually) or talk to me at all any more. I didn’t need to matter to them, that wasn’t what being a friend was about, I just wanted them to know that they still had a friend in me. And then I got septicaemia (not for the first time that year). I nearly died. I was very, very unwell. A couple of weeks later I picked up my phone and there was not a single missed message. Nobody had cared to investigate the fact that my daily texts had just stopped. Nobody cared at all. So I don’t message first any more (I make an exception for uni mum, who I spoke to on FaceTime for over an hour today… and it was just like old times, and she said we need to meet up and go for drinks when we’re both back in London and it made me SO HAPPY to have someone that I can just talk about anything and everything – but not the hell I’m about to go through, even though she understood some of the unpleasentness immediately  – to).

The people who matter, and the people who think I matter, don’t wait for me to ask for help because they know I never will (he knows this well). They send messages, and yeah when I’m breaking down or can’t human, I don’t reply. If I don’t know how to talk, I don’t. If I don’t think I can try to explain in a way that isn’t going to make the waters of what is going on even more muddy, then I don’t try to explain until I can answer their questions. Most of the time, I just can’t face human interactions when I’m in the middle of crap. But that’s how people tell with me. Given a little space, I figure out how to string together some words, and eventually I do.

Sometimes I just shut myself off. When my world is collapsing around me I put all my efforts into holding myself together (or in recent times, trying to resist the thought that the only logical way to cope was to end it all – once again, thanks to the hope of running again, for shutting that thought up). I want to be there, and I want to reply, but I can’t interact with humans at all. However, I see these messages, and I know that those people are true friends. I know they want to be there and don’t know how to. I know that I am so shut off and withdrawn that they can’t get anywhere close. And they know that I will get through it, and that those messages mean more to me than they will ever understand. I don’t care what they say, that little message notification means that I may be out of sight but I am not yet out of mind. And I hate myself for not being able to instantly reply, or to offer more than an “I’ll be fine” or an “I can’t talk right now, I’m really sorry.”

Conversations where my message was the last… conversations where between the last message and the present moment, I have had a breakdown and been on an emotional rollercoaster and/ or my body has almost killed itself yet again and there isn’t a single unread message… Those conversations tell me that I shouldn’t bother trying to rekindle the fires of those friendships. And then I hate myself more, because I know it works two ways. Some would say that my health and my emotional state as a result of it at times, both excuse the fact that sometimes I just cannot human. My closest friends understand this. And they are the ones who push me to into thoughts like those above, they reinforce that view point and sometimes even plant the seed that grows into the paragraphs above.

I know this is ridiculous and so, so pathetic. Friendship has for me always been a sacrifice, it has always been about bleeding myself of all energy and emotion for self-centred people or for those who don’t realise how amazing they are. I gave my all to my friends. I am there whenever I am able to, and unfortunately lately that hasn’t been anywhere near often (probably not at all, actually, other than for My Fellow Third Wheel, who I helped through a seriously crappy time). But Uni Pal and other wonderful friends I have made, have recently opened up the other lane of the twi-way street of friendship. They have shown me that it doesn’t have to be a sacrifice, and if it is then it is an alternating sacrifice which swaps between both parties in order to lift the other. And I wasn’t willing to shut that lane. I wasn’t willing to be the only one making the sacrifices again. And that’s selfish, that’s so so selfish, because I want to shield my friends from me and my life, I want to protect them and keep them safe and happy and blissfully unaware of what I am facing. I don’t want it to destroy two lives… but it doesn’t. I am also learning that it doesn’t. And I don’t want my friends to make sacrifices for me like that. I’m talking about really, really little teeny tiny things, just to let me know that although there is a traffic jam on my side of the road, and the traffic is trying to move but just can’t… there’s still someone there on the other side.

And in the case of Sixth Form Friend, when the traffic jam blocked one side of the road, his side was not open to allow the emergency service vehicles to get through. This was just the one time where my other friends woke me up.

Yes, uni mum did this. But her actions from the moment she first met “seriously ill me” in the anatomy practical she was helping out in (and sat with me in hospital late into the night) spoke so loudly that I didn’t need her words.

I’m a mess right now.

I don’t even know why I posted this. I’m actually a little unwilling to hit post because I’m worried that you guys will want to slap me when you read this. I will take a chance and post it, keeping in mind the fact that I can delete it at any time.

Sorry for this one.

What did I even do.

Only Me

(Trigger warning, I guess. Seriously guys this post is like a grenade about to go off)

For days I fought the urge to end it all. I cried as I concluded that the end was the only way to cope, because damn it I didn’t want to go. I didn’t want to go and yet I could not find a conceivable way to stay. I tried to think of ways to make the future ok, and I couldn’t. There is no way to avoid the unpleasantness. Everything else on this blog is nothing, NOTHING, compared to what they are asking and expecting me to go through. My mind crumpled at the though of any other way. At the thought of what it knew it had to meet, the tears came, and my world imploded, my thoughts crushing each other under their own gravitational pull until denial smothered something over the vacuum that was left.

There were three options:

The easy way, the way that no part of me could find a negative towards. The “anything”. The option I spent the longest thinking about, that made my heart sink as my mind concluded it was the only thing to do – end it all.

The hard way, the blind and hopeless hoping that will lead me through hell on earth, that will break me in every possible way. The future I don’t want to meet. The kind of life I don’t want to live. The unpleasantness I do not know how to face – let them try. Let a more specialised team of doctors try a more advanced and specific version of something that was so unpleasant before that it killed who I was and left me scarred in ways I cannot explain. Another form of death, but one that makes everyone else feel better, a death that involves keeping my pulse (hopefully) but that will leave nothing left to save. Hope with nothing to hold. No guarantees that it will even work. No idea what it will drive me to – anything, anything to escape the suffering that I know it will induce. Left with no life. Left in a worse state than before. Alive but for what purpose? Alive with no life, nothing left, traumatised again… Not a price I want to pay.

Somewhere in between. The stuff I need to do but have been told I can’t. The option that will make people judge me and walk away and… Make things bearable – change.

I have nothing left to lose. I am heading for a route that is going to break me, a route I am not prepared to take but have no option but to… But that knowledge in turn drove me to a long and logical thought process that concluded the only way to escape, to cope, to manage, was to end it all. Only I didn’t want to die. I don’t want to die. I have been through too much to go now. I don’t want to do that. But I don’t want to stay for the hurt and the fresh memories and the future that will haunt me. And the easiest thing to do, the easiest thing… Cannot happen. I cannot let it happen. I want to end everything, and I was so serious about the thought of this that I cried each time it went through my mind. And so anything – anything… I will do anything to stay alive, to stay whole.

I am just one small, insignificant human. Nobody and nothing depends on me. There is no loss to society if I self destruct. I am small enough that my absence would not leave a ripple in the tiniest pond. And so this is it. The start of what may not be the end, but what many would call stupid. It isn’t stupid though. It has been well thought through and is preferable to a deliberate act to remove myself from the planet. I am desperately trying to cling to… My life. To me. I do not want to seek the end. I do not want to be driven tot that and I am trying to find another way, another thing to give the hell that my life is about to become some sort of meaning. This, now, is my sensible. I need control over something. This is the way where the fewest parts of me die. And if it takes me, then I go with a smile on my face and a fire in my veins.

I’m going to run a 5k. “Big deal” so many of you will say, but my fellow third wheel knows how disastrous this is. I walk 20m and my body protests at the moment. Any exercise wrecks me. I cannot run. I should not run. It is dangerous. It will destroy me. But so were a lot of things supposed to. And it isn’t a case of if I can run. I will run. I am done with limitations. I am done with being unwell, with being the ill person. I am done with hospitals. I have chewed through the leashes that my situation has imposed and I am so, so done. I don’t care about the consequences. They will be no worse than what is waiting for me. And I will be happy right before they occur.

I need something to live for. I need something to hold onto, to focus on. I need to punish myself and reward myself and discipline myself and damn it if I feel like I’m dying then at least I know that I’m still alive. I tried to run fifteen metres a few days ago for a train and became dangerously unwell as a result, passing out multiple times on a train, losing the ability to breathe properly for several hours, chest pain… And it didn’t bother me. Because my legs weren’t bothered by running, which made me realise that I can do it. I felt like I was going to pass out again and I… Stood up. I stood up and I knew I was going to pass out but I felt in control. I was pushing my body until it broke. It was not going to break me. It is not going to break me. Somehow I walked – floating, drifting, disconnected from my body and fighting for consciousness. Nobody stopped me, I got a few worried looks, was asked if I needed an ambulance. But I was not going to a hospital. I am not going to a hospital. I will not be an inpatient again. I am not being that person anymore. I cannot live that life, I cannot meet the things that I will have to meet – because I can decline admissions but once I am admitted they have me, they can try whatever treatment they like because I am too scared of them to say no. I am staying on the outside. I don’t mind suffering. I do not care.

I am taking a huge chance on my own body and I am going to start training. I’m going to buy a road bike and a turbo trainer as soon as I move into my new accommodation, and I will hide it from everyone else I know. I am working on my own training regime, building from “couch potato to 5k” except I am building myself up to couch potato before I can even start there. And I don’t care if it hurts, I don’t care if every workout makes me pass out. I don’t care if fluid foams from my lungs or if my stomach becomes so distended I can’t fit into my clothes… I don’t care if my heart freaks out.

Because there are another two options: Fade (or maybe not fade at all) happily or hold on until I’m empty.

In order to keep living I have to let go. I cannot do this. I cannot carry on the way things are. I have to let go of the thoughts that hold me back, of the things that hold me back. This body will learn. It will. It will get over itself and it will do what I ask of it or so help me it will die trying.

And if this works, if somehow I manage to start swimming more than 25m at a time, and can last more than a few minutes on a turbo trainer, and build up to running that 5k… That medal at the end of the race… Will be one great big middle finger to the world. And then I will tell people that I ran. It will fill me with so much… Something. (And then I will go back to sailing and aim for nationals and finally get to sail my laser – I need this, I need something to hope for, something to aim for, something to live for).

Initially my plan was to train until it hurt. To train until I physically couldn’t anymore, until I collapsed off of the turbo trainer in my room and couldn’t move. Until my body could not physically power me any more. Until one day it learned not to fall. I felt like I needed punishing, in a weird, weird way. That first night after the appointment I slept on the floor because I was so disgusted at what I was considering that I felt I didn’t deserve a bed. I felt like I needed control, like my life was gone and the future was nothing and my way of taking that control back was to push myself. And I would motivate myself by withholding food until I had trained for that day. But that is no longer the plan. The plan became safer, more realistic – it starts with walking and it includes four rest days a week.

I told the friend from uni who I met with the other day. I told my fellow third wheel. I am hollow, I am broken, I cannot feel, I cannot think, I cannot face anything or anyone other than those two people, Aunty Godmother (and family) and my Godfather (and his family, who I met with before I saw my friend). I am fighting, so hard, to stay alive. And not against a physical illness this time. Against myself, against my own logic. My own fear… My own dread… And to my surprise my two friends supported that plan. They knew that for me to say hell, it would be bad. Watching me in the ICU so close to the end and me later saying it was just what happened gave the some idea about how crap things are about to get for me. They were more than supported, my fellow third wheel is helping me – he’s keeping me grounded within my body’s capabilities and is working on a training plan with me. My friend from uni was beyond supportive of the whole thing. Nobody else will be. But these guys know how much I’ve cried, and they know I never cry. I cannot talk to them, I cannot talk to anyone. I am not ok. I am broken. I am writing this because… Because you guys need to know that things are going to change.

I have a diabetic penal arranged by a charity called Beyond Type 1. And she (also my age, and living in Scotland) is the only person to whom I think I can face discussing a health hiccup again, even admitting they exist. I don’t know what this blog is about to become. I don’t know what I am about to become, but things are about to change. I don’t want to be that person with all the health hiccups anymore. I don’t want to be incapable. I don’t want to face the hell that a team of consultants are about to ask me to go through in hope it might help one health hiccup a bit, with nothing to try and stem the arterial spray of myself that I am about to haemorrhage. I am going to lose everything. At the thought of what is going to happen I broke down… And so I cannot think about it. I need a distraction. I need to be who I was. I need to find something. I need to find a fire to outburn the one that is razing me to the ground and calling me to end it all.

And I am willing to risk going up in flames.

Time to enjoy today’s purchases – two running magazines and more alcohol than it is healthy for me to consume (and some non-alcoholic stuff which… Won’t be consumed tonight).

I cannot cope at all. I cannot cope. I can only drink, right now. And continue to hug my dog and watch films with my fellow third wheel as we cook the Thai food we bought earlier…

I don’t know how often I’m going to blog. I don’t know what I’m going to talk about. But I kind of want to ask you to stay, to keep reading if this is a blog that you follow, because… This means a lot to me. And I think that the doctors were wrong. They were wrong when they said I would die all those times. They were wrong when they said that exercise would kill me (swimming messes me up but hey). They were wrong when they told me that there was no way things would improve, because somehow my superhuman body managed to get itself to the point where I can now walk. They were wrong. I defied their odds. And now it’s time to make my own. Stick around. Stick around to see picture of a finishers medal from a 5k race. Please.

And when I’m less broken, I will come back to this blog, and I’ll be here too.

I’m trying. I don’t know what else to do. I am torn in half and being beaten up in a blender of my own emotions, and it is taking all I have to resist running to the grim reaper, running from everything I cannot face.

You have to understand that there will be nothing left to lose no matter what happens. If I go through their hell with the feeble amount of support I currently have (or even with any form of support) I will probably kill myself to end the suffering and make it stop, or at very best end up dead and numb and devoid of all thought and feeling, and therefore be plunged into a living hell. If I end it all, then I will end up in actual hell. Or I can try to live, to carry on, and I don’t even know what’s going to happen in terms of going through hell, but there is no life to lose. If I go, I will be no more dead than I already feel right now. And hey, right before, I may even feel alive.

I am fighting so, so hard, to keep existing. But I am not giving up. And it is so difficult, it is an almost physical feeling. It is eating me alive, it is awful. It is destroying me.

I’m a mess. I’m messed up. This is messed up. I never thought I’d have to go here. I never thought I’d hear a doctor suggest that idea again, let alone go through with it. To save what? To leave me with a life I don’t want to live? Damn I wish I could talk to one of my uni parents right now, either one. I need some logic. I need someone to listen without reacting. I need help. And I don’t want it.

I am doing this alone.

I am hiding my exercise regime, hence why I’m not signing up to a gym or putting anyone in the possibility of having to watch me die in the gym at my accommodation. I will shut myself away. I will conceal the worry and the panic. I will push through it. And when the pain and the incapability and the weakness and the exhaustion have gone and passed… Only I will remain.

Only me. 

I am trying to get a life. But this time I’m running my way out of a rut. I will not give in to this feeling. I hope.

Take It All

I lay in the dentist’s chair sweating with nerves, all of me tense. But this level of fear doesn’t bother me. It is nothing in comparison to the pure terror induced by my flashbacks and nightmares, and so oddly, it is almost relieving to feel a normal, acceptable level of trepidation. There is no panic, only anxiety. And yet… It is still strong enough that it is controlling me rather than me it. I cannot take my hand away from my mouth, even though I am trying to, and when I eventually manage to, my arm swiftly springs back to push away the dentist’s hand, only moving away when she promises that there will be “no pokey thing” and agrees to give me a mirror so I can watch.

She lets me pull a fragment of my own tooth. Actually, I sort of say,

“Wait!” … “Can I do it? Can I try?” and sort of start poking around at the broken piece of tooth that I pushed (more or less) back into place (it is displaced and now jammed into my gum). She looks a little surprised, but agrees, and hands me the fancy dental tweezers so that I can get a better grip, instructing me on how to use them and holding up the mirror for me so I can see what on earth is going on. I relax a little, because I feel in control, and I can see what is going on. (It reminds me of the time that I was 18 and the doctor on the paediatric ward I’d lived on for a while gave me sterile tweezers and let me pull out the packing of my own surgical wound. His colleague had ripped out packing in the same wound a couple of days before with improper technique that had made me, the person who walks around with broken bones and swallows the pain, roar in agony. I wasn’t letting anyone near the wound again, and so they came to a compromise and showed me how to do it). Occasionally I hand the tweezers to the dentist and let her move the fragment into a position where it is easier to for me to grab it, and we slowly build up this little relationship where I know she’s not like the rest, and she relaxes me a lot in taking time to acknowledge that this needs to happen before I will let anything else advance. She understands my ridiculous phobia (I watched my mum kicking and crying out in a dentist’s chair when I was a young child and it FREAKED ME OUT about the dentist) and is very patient, but the fragment has been wedged so firmly into place by my immediate and panicked repair job the other day (except not properly back into place because that bit of my tooth is displaced) that it won’t let leave.

So the dentist steps in with something not too dissimilar to this (only sterile, silver and super shiny)

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A pair of rusty old pliers that I found laying around at home

She mocks and teases my mum a lot and says that she really isn’t helping the situation with the things she is saying, at one point even announcing that she’s stopped listening. This makes me laugh. While she’s putting a temporary filling on what is left of my tooth.

Throughout the whole thing she keeps telling me that I am delaying her next appointment and don’t even have one booked. She goes on and on until I feel so guilty and awful that I can’t stop apologising (hey, it is me, you know I had already apologised multiple times because I feel bad for most things I do, sometimes even existing). I apologise profusely over and over and she ignores it. I thank her, because that’s what I do. Over and over the word slips involuntarily and instinctively from my tongue, I am pre-programmed to show gratitude to people who help me. But I still feel pretty awful.

When she turns away to the computer I sit up. I am soaked in sweat to the point that they give me a towel to dry off with. Skippy (my heart) is angry at the adrenaline rush. Bob Jr. is required to five an extra bolus of insulin because adrenaline and stress majorly mess with diabetes. On the way out, the dentist makes us stop in the waiting room to apologise to her next patient whose appointment I took up, and to explain. She then announces “see, it wasn’t my fault, blame them.” And my guilt goes off like a firework, tearing me apart – I already felt awful, she had already more than made her point. Anyway, I leave minus 1/3 of a tooth, and as soon as I get back to the house, I write a thank you card (because I had no appointment, was told to turn up and wait for an indefinite amount of time, was treated quickly and took almost an hour to have the simplest procedure. The dentist was blunt bordering on rude but I like that in people, it makes them feel safer and easy to trust if I were ever stupid enough to do that again).

I also, of course, pack my swimming bag. I have been tense, and I want to let it all out.

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But I never made it to the pool. I had no way of getting there. My mum took my brother and nephew to the new trampoline park that has opened near to us. I always loved trampolining. I’d have loved to go with them, but there’s no way Skippy would permit such an activity. She expected me to want to watch them. I explained that this would be torture and she couldn’t understand how. The boys were highly unimpressed when we picked them up. They were bored. They’d been in a room with walls and floors made of trampolines and they were apathetic about the whole thing. WHAT IS WRONG WITH KIDS TODAY?! My mum was unimpressed, and I wanted to try and make them appreciate how awesome what they had just been able to do was. But I kept quite and thought of a pool.

I watched the Olympics as time moved on. I ended up pacing around the house at one point like a caged animal. I had a random swirl of emotions and a teeny tiny bit of energy and I wanted to get out and go. I so, so nearly took my bike off of the garage wall and went cycling. So. Nearly.

My mood sunk like a lead weight. For three hours I felt empty, numb. I laid on the sofa and went to sleep.

And then at some point my nephew posted a self pitying status on social media saying he was sorry to everyone he knew for his behaviour when he was younger and understood if they unfriended him and he hoped they didn’t have to encounter anyone who behaved like him ever again. I was like… Please, a pity party? Dude. I do not miss being 16. Turns out someone he used to go to school with six years ago told him that they were never friends, she had been forced to be his friend, and everyone at that school hated him. After hearing the explanation he refused to give to anyone else, I understood his feelings and thought his reaction was more than justified, but I was also a little annoyed at the outpouring of attention he got from my family – not because he didn’t deserve it, but because it reminded me how differently they treat me to everyone else, how I will always be in the shadow of people who share blood, that I am invisible. It reminded me that I am invisible.

I email them privately and get nothing. I try to talk and get nothing. I cry out to feel part of this family that I clearly will never belong in and they just leave me because they are concerned of stepping on my parents toes or whatever. They don’t want to deal with me. I’ve made posts worse than that, posts where I asked for help because I genuinely needed it, because I was going through things that they or my nephew could never imagine, and they all ignored it. I sat there and watched my older sister (not his mum, the other one) message him. She wanted him to talk to her instead of me, she seemed to think she was better. And I was angry at the world for my nephew. He’s 16 and taller than me and he just sort of hunched over onto my shoulder and I held him for a long time as his voice grew quieter. I sat in his room with him and just wrapped my arms around him and we sat, him leaning into me, me comforting him like a child and raising how young this 5’11”, deep voiced, strong man boy actually is. I talked for a long time. I comforted him. I knew I couldn’t fix it, I knew nothing I could say would take away the sting of her words, but he’s like a brother to me and so I was the big sister he’ll never have. But damn it hurt to see him getting those messages. It hurt because all I could think was where were you when I needed you? Why am I always there for everybody, and yet nobody is there for me? How am I even selfish enough to think like this for a second I AM A DISGRACE. 

I revised for 15 minutes this morning. I have an exam on Friday right before I move in with Aunty Cousin for a week, which my cousin, who turned 14 yesterday, is as pleased about as I am. My family will be going to France. I want to go with them, but this family isn’t good for me to be around at the minute and I should be in hospital right now (yeah I’ve been keeping that fact a little buried, but I know I’m very ill and if I didn’t have an exam on Friday I may even have checked myself into a hospital so they could give me some IVs before I end up unconscious and in the ICU). There’s just too much going on in my mind at the minute for me to focus. I just can’t. I’m hurting emotionally a lot. And that is pushing everything else out of my mind. So I need to swim. It is the only safe way to let that out, the only way where nobody else has to listen to the things on my mind and use them against me or dismiss them or tell me that what I told them just ruined their life. I can’t take that. I can’t take feeling like filth even more than I already do. I’m going to the cinema with my fellow third wheel tomorrow night (we arranged last week that we would go today but then life happened), so I plan to swim in the morning in order to clear my head enough to revise all day.

I want to reach inside my brain with a pair of pliers and pull out all the memories and all the emotions that bubble up without warning. Most of the time now I just feel an emotional numbness, it is easier just to switch off and carry on without feeling or thinking. I want to take those pliers and tear out the PTSD. I want to wrench out the episodes of depression that roar over any other thought when things get tough in terms of home or health or the outlook of my future. I want to take pliers and pull out each malfunctioning organ, every stupid cell that has gone wrong one by one. And I want to burn it all.

“Don’t stop at the tooth” I wanted to scream at her, “Take it all! Take all of it. There is so much I need you to take. So much.”

I’m struggling. And a lot of people will call me pathetic, they will tell me to get a grip, they will ask, as my own mother does, what on earth I have to be “down” about. But they have no idea what I’m going through. No idea (and in my mother’s case, even when I tried to tell her she wouldn’t accept some stuff). They have no idea what I have been through because the stuff I write on this blog is the tip of the iceberg and it is more than anyone who knows me will ever know. The last people I would ever open up to are my parents. I don’t talk to one of them because he behaves like an aggressive child, and my mother just shouts now and tells me I’m pure evil or ruining her life, which she doesn’t mean after the heat of the moment has passed, but eats away at my already minuscule self esteem. I have nobody to talk to. Nobody to turn to. My uni parents solved this for a few weeks but that bridge is burned and sunk and washed away by flood water. I feel alone. I am not alone, I know I am not, but I feel alone. There is nobody I can fully open up to. There is stuff I can never let out because it will destroy lives. There is health stuff I can’t talk about because I don’t want to spread the feeling of futility that occasionally overwhelms me when I take a step closer to accepting it. I am drowning. And the only way to stop that is to swim. Literally. Sport always got me through before.

And there is still no way but through.

Ricochet

I always get a little on-edge when things suddenly start to improve. I enjoy them warily, cautiously, before giving in to my desperation and throwing caution to the wind. Some call me a pessimist, but after years of living with this body, and wandering through the course of my life, I am simply a realist. The higher you climb, the further you fall. If you’re on the floor you can’t fall. If you are only a short way above, with your expectations limited, you don’t do any serious damage. But I have been in  the stratosphere. And pathetically (and for no real reason) I hit the ground with more than a bump.

“That’s the point. This healthy-feeling time now just feels like a tease. Like I’m in this holding pattern, flying in smooth circles within sight of the airport, in super comfortable first class. But I can’t enjoy the in-flight movie or free chocolate chip cookies because I know that before the airport is able to make room for us, the plane is going to run out of fuel, and we’re going to crash-land into a fiery, agonizing death.” – Jessica Verdi, My Life After Now

Physically, things haven’t been going great. Compared to how I was a few weeks ago they are excellent, but really not great. Health hiccups are starting to hiccup in combination, a combination that usually attracts the grim reaper for a little chat. But that wasn’t going to stop me.

After my swimming stunt on Friday, I slept a lot yesterday and cuddled my dog for hours as I lay beached on the sofa. I watched the Olympics, and I was in heaven at having non-stop sport to watch. I felt inadequate and inspired at the same time. It woke in me the same ambition that was planted in the mind of my 12 year old self when I walked out of the pool (after an afternoon of swimming laps while my dad and brother messed around) and saw footage of Rebecca Adlington winning a gold medal while I sat in the café waiting for my dad to finish drinking his coffee. There was that same idea of I will never get there, but I can dream of getting somewhere half close. Only this time, “there” was nowhere near as ambitious. I started to wonder if I would ever compete in any sport at any level again. But it wasn’t a sad thought. It was a positive thought, it was a driving force. It was a burning desire to get back in a pool or in a boat or be attached to a pair of legs that could run for miles… And I lost myself in the heaven of imagining what that life might be like, what the life I used to have might be like if ever it returned. And it didn’t drag me down. It pushed me higher. After my surprising ability to swim, I felt a little invincible (which is always dangerous with me because it encourages my stupidity).

I nearly bought a road bike (and a laptop, but hey). A road bike. Me. The person who it took two and a half hours to swim 1,100 metres, and whose body and heart screamed the entire time (and the heart for about twelve hours afterwards). I knew swimming had been too much, that there was no way my heart alone would deal with cycling, and yet for a brief (but not as brief as it should have been) moment, my brain was all Yeah heart you can do that… (It can’t. It TOTALLY can’t). But there I was, looking at a cheap but decent road bike in a massive sale on a cycling website, imagining myself holding the handlebars and cycling my way around London to get to the Olympic park and go for a swim… Me.

I wanted to go for a run. 12 year old me could never ever sit still, she was always doing some form of sport (or reading/ writing a book… or drawing… But mostly sport) and she seemed to be back in charge of my brain. I had found myself in a swimming pool and although I loved the sudden fire for life that raged within me, I was aware that my sudden urge to go for a long, long run through the woods was probably rather stupid. Because my legs wanted to move. I didn’t want to sit still. Exercise is different now. It never used to hurt and now it is near agony (even to walk half a mile). I never used to notice the extra requirement of my heart and now even walking reminds me that the demand for blood is higher as my heart races and aches.  But still, I wanted to go for a run. I wear running shoes most of the time because that temporarily appeased my urge to run when things got tough at uni, and continues to quiet my urge to just get out and go. But I couldn’t run, because I knew I’d probably end up in an ambulance. So I walked my dog for half a mile without a care in the world. And the only thing that stopped me running was the clothing I was wearing (not even the partially torn tendon and my screwed up knee, both of which were taped with physio tape).

My hugely distended abdomen didn’t bother me. The twinge in the back of my knee and my patellar tendon with every step didn’t bother me (for once I walked without my knee cap wandering round to the outside of my knee – where, for the record, it really shouldn’t be).I was impressed that for once my immune system seemed to have contained (but not kicked out) and infection after a worryingly fast initial spread. The thundering ball of muscle in my chest that ached a little was drowned out by my relief at just being outside. And I’d managed to swim the day before. That had saved me. After those 1,100m of pain and cardiac outrage, life felt bearable again. Mentally, I felt refreshed and freed. For the first time in years I had the opportunity to clear my head, to think of nothing, to let time pass without the dread that it is dragging me towards the next hurdle into which I will stumble. As my muscles screamed all the pent up frustration and worry and… Emotion had just seeped out of me, lost to the blue of the water. That is what sport always did for me. And I was still riding that high as I walked my dog, craving it again like a drug.

Instead of freaking out about my hospital appointment in London tomorrow morning, my brain focussed on how I planned to come back and swim afterwards, in the pool where my old club is based (went swimming in a different pool the other day because my brother and nephew wanted to go somewhere with slides and rapids as well as a fitness pool). I was so excited and happy at the thought of swimming again that there was no space to freak out. Swimming helped me conquer fear that is usually crippling by this stage. It also helped me sleep the whole night through for once (and most of the next day but hey).

I stupidly fell head first into the brilliance of it all, the feeling that everything was falling back together, that I was being reunited with myself. But this is me.

I now feel I should set the scene. The 5th/6th teeth back on both sides of my top jaw both have HUGE holes in them. Until recently I’ve had perfect dental health. But I need surgery on my lower jaw after an infection so we decided to hold out and kill many birds with one general anaesthetic. For a couple of days, eating had become increasingly difficult as suddenly the only side of my mouth that I could chew on started to hurt as well, meaning that I could only chew with my front teeth. I found myself picking stuff out of the hole in each tooth with a toothpick after I ate anything. Anyway, yesterday my left holey tooth started to feel… Weird. (Scene set!)

A short section of my maxilla is about to become toothless, and not in an ironic sense like the adorable dragon in the How To Train Your Dragon series by Cressida Cowell (who I think one of my uni parents is actually friends with, awesomely enough) but in an OH NO I’M GOING TO LOSE A TOOTH EXCUSE ME BODY COULD YOU JUST NOT kind of way.

At about 11pm, I touched the hollowed out tooth on the lefthand side of my mouth. And I got the sensation of a wobbly tooth as HALF OF IT BROKE OFF under the gentle touch of my finger.  Cringing (I do not do teeth. NOPE) I pushed the broken half back up into my gum, where it stayed somehow, and messaged my fellow third wheel (We message a lot anyway, and he’s a good person to talk to in a freak out because he doesn’t react emotionally at all so it’s great). I looked at my tooth and there was a crack from the bottom of it right up into my gum, with a slight displacement of each half. Well ok then. I thought. Except it wasn’t ok with me at all. The hardest substance. In my body. Broke. By itself.

It wasn’t a big thing, but I got so annoyed over it.

“[Me] please, [crying face] stop f***ing stuff up” My fellow third wheel joked.

But that’s the point. I felt like I’d screwed up another thing. Even my teeth couldn’t go right. The physical pain of a throbbing tooth didn’t phase me. I’m used to physical pain and can tolerate a stupidly unhealthy amount of it (which leads to weird situations like me walking around with a broken ulna for three weeks whilst in hospital, and insisting it couldn’t be broken because I could deal with the pain… This was the second time I’d wandered around for over a week with a broken bone. If I ask for pain relief or am actually bothered by pain, it tends to be BAD). The pain that I couldn’t handle was the emotional sort dragged up by the pain of a raw nerve meeting air and saliva for the first time. Pulses of pain throbbed through my tooth, and all I could think was, Why can’t I do anything right? I can’t even have a tooth right! A teeny tiny tooth! What next? I can’t even not screw up myself. How… How did it even break? And then I just got really angry at myself and concluded that I was indeed a complete screw up and could do right by nobody and nothing (this was a frame of mind induced by my family over a few days/ a very long time actually, but which swimming had helped me to shake off for the first time since I don’t even know when). I didn’t get all mopey about it, just super, super frustrated at my idiocy, even though I’m pretty sure that my tooth breaking genuinely wasn’t my fault. It was my tooth. I felt responsible for it. I feel responsible for all of my health hiccups sometimes, even the autoimmune part… As if I had any control over that (I’m an illogical thing most of the time).

I didn’t want to go to bed, so I slept on the sofa. My dog clambered up onto my legs and curled himself up so that his face was resting on my shin. He stayed laying there all night, only changing position when I got up and he freaked out with excitement upon my return no more than a couple of minutes later each time. I have too much love for that dog. I just cuddled him, and he let me hold him. Because he seems to be the one thing I can do right by, the one thing I haven’t screwed up. He loves unconditionally even though I don’t deserve it.

My mum of course got annoyed when I told her about my tooth. She swore at me and was very moody, which made me feel even more like it was my fault and I’d done something wrong. I was astounded at her reaction, actually. She was even annoyed that I’d texted her about it last night (knowing her phone was on silent and downstairs) in case I was asleep in the morning and needed to be woken up to call the emergency dentist before all the appointments went. Dad had just told me to go to sleep and wait until Monday. I was so tired I slept almost instantly and struggled to stay awake even on the phone to the dental person. Usually when I start to sleep this much it means the grim reaper is looming. My mum even said yesterday that I look like I am at the start of a very significant health crisis that usually ends in ICU for me. But denial smothered all of that. I was wary about telling my mum the outcome of the appointment. I’m scared of the dentist and the dentist said my tooth need to be pulled and the other filled, but that she wouldn’t do it there and then, and just gave me some antibiotics.

I nearly cried. The thought of extreme pain, the thought of having to deal with something else so tiny on top of other health issues that are so huge. It was just a little crushing for a few moments. I didn’t know how to cope all over again. I wanted to rip my tooth out and throw it across the room as it throbbed away in my jaw, taunting me.

And now my grandparents are here for lunch, which will be interesting after the other day when they were selfish and made me wish I was dead. I can’t even comment any more. It will start a war. And there’s already a battle that they’ve started over me. Pathetic. Selfish. Shameful. That’s how I feel their behaviour was. I don’t even know how to look at them right now. There are things I need to say that are better off unsaid. They also happen to be things that they need to hear. I cannot deal with selfish humans right now. They don’t care about anybody else’s feelings and we all pander to them too afraid to upset them. I’m done being torn apart by members of this family. Shots have been fired. And they will ricochet back at the people who fired them. I don’t want to argue, I don’t want to fight. But I need to let a lot of stuff out – carefully, politely.

No way but through.

The Overflow

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No way but through. 

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

 

This Time There Was A Little Regret

I wake up this morning with every muscle searing. It hurts to move, it hurts to attempt to sit. My body is in shock – the aftermath of a half mile walk with my dog yesterday that realistically was half a mile’s worth of steps too far. I hadn’t realised my body was quite such a poop. But it was worth it. It was freedom, it was happiness. My dog needs to be walked every day (and isn’t unless I’m able to) and, in a weird way, I do too (I mean hey I’d rather run but… That’s probably never going to happen again unless you listen to my blind optimism at the minute). I get restless being stuck inside the entire time. But do I listen to my body’s protest at half seven in the morning? Yes. I roll over and fall back asleep.

Do I listen to the same protest at midday when I wake again? Of course I don’t. Replying to some messages from my fellow third wheel, I go downstairs half dressed and find clothes, and then I see my dog and I see the sun and my parents are ranting at each other about the continuing family feud that has continued to take place in my absence and is partially a reaction to me (and I can’t even deal with the situation because NOPE)… And I grab the dog’s lead and harness and put his collar on, and before I know it, we’re gone.

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He was amazingly good and walked to heel the entire time (even though I’ve never trained him to do this). This picture was taken as we walked down an alley to take a shortcut. The clear wire at the top of my left leg is the line that connects me to Bob Jr. who is that little shape visible in my left pocket.

This was not the plan! I think to myself as we walk away from the house, but the sun is shining and I instantly just feel so happy to be walking under trees and breathing in fresh air with the Goo Goo Dolls’ most recent album playing in the earphones that I managed to relocate this morning (I am discovering a lot of music lately that I really like!)

And we walk further than yesterday, because I am riding a high. I am loving being back outdoors with my dog and every step hurts but I don’t want it to end. I push on when breathing becomes difficult. I push on when my legs start to scream. I push on when my heart turns into a runaway train, and I push on when I don’t know how to take another step. Luckily we have a lot of friends who live in this village, so I adapt our route to take us past their houses, so that if I collapse there is somebody who knows me. There is literally no way but through this feeling, we have to get back to the house and we have to do so under our own steam. The sun beats down, I touch my dog’s fur and it’s so hot. He’s panting but still ok. I’m panting and near collapse. And a quarter of a mile from the house, my heart starts to scream. I slow right down, and it isn’t a conscious decision but a physical limitation. I am not what I thought I was. Walking is still not my thing.

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Starting to regret things seriously right about now… And at the same time not, at the same time loving the fact that I am walking my dog again, and at the same time letting the joy of this overwhelm and justify everything else. 

I can’t breathe. I mean I can, but I am heaving air, and slowly an audible crackle emerges, with fluid catching on each exhalation and making me cough. This is what used to happen at swim training in the end, right before I stopped. I ignore it and let my lungs do what they want, until I can’t ignore it any more, and I am breathing laboriously and quickly as though I am running. And then I start coughing. And then I am dragged out of my denial and I have ALL THE REGRETS because we are still about 300m from the front door, which doesn’t sound like a lot, but is A LOT. I take slow, clumsy steps, and I savour every moment because all I can think as I look down at my dog, who keeps looking up at me and pausing for cuddles, is He’s 10 years old. Our last dog was 10 when he died. He’s having surgery tomorrow. The anaesthetic is risky given his age and stuff. What if this is his last walk? and then I have to shut that thought process off right there because it makes me want to cry.

We get home. I’m melting because for the first time in a few weeks I’m not wearing shorts. I fall onto the sofa, manage to wrestle my jacket off, and endure the awfulness. My head aches and I feel ridiculously dizzy. I feel like I’m going to throw up. My leg muscles scream at the amount of lactic acid they are currently bathed in. My dog won’t leave my side, he rests his head in my lap, but he is hot and exhausted and eventually lays on my feet.

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This image perfectly represents how we both felt after our short little wander. 

Gradually I regain the ability to breathe at a normal rate. The headache fades and the nausea vanishes and the dizziness eventually subsides, but I don’t have the energy to move. A walk. A little walk. 3/4 of a mile in just over an hour. Painfully slow. And beyond my capability. Just a normal activity. And I thought I could manage it.

I finally respond to the multiple messages my fellow third wheel sent me while I was walking. And I am full of regrets but as everything improves all I can think is It was worth it. That was amazing. I WALKED THE DOG AGAIN. WE WENT FOR A WALK just me and my pooch and IT WAS HEAVEN. I’ve been kind of puffy for a week or two, retaining water and unable to increase my water tablets because of my kidneys (and because I’ve almost run out). My face has puffed right up and I’ve looked like I’m heavily pregnant for a while, but after this walk it is my lower legs that swell up. My nephew walks in and I realise that actually I LOVE having him here, and would probably swap him for my little brother, who is being a pain in the butt. My mum comments on how puffy my face looks. I need to sleep. Even though I woke at midday and it has only been an hour and a half. My body is annoyed.

A gentle swim would have been preferable to a walk. It is much lower intensity and less stress on my body.

“I sense a little regret?” My fellow third wheel messages me. And he’s right, there is… Right under the smile that I cannot shake off. I won’t do it again. I don’t want to break. But I am glad I got to walk this morning.

And now to finally set up my t-shirt selling website thing that I’ve been working on (I have a website but have yet to upload any designs because I am an idiot and have been going through some stuff because I’m all pathetic). OH AND I NEED TO REVISE BECAUSE I HAVE AN EXAM ON THURSDAY (and I am completely not in the right frame of mind to sit it, and exam stress is completely suppressed by my family making me feel like a screw up and wish I was dead with their stupid selfishness so I can’t find motivation to o anything uni right now, which is why I needed a walk). And call me an idiot, but this afternoon, my swimming friend (who I went for lunch with the other day) and I plan to go swimming. My aching muscles will thank me, the one that powers them all may not.

No way but through. And to a pool.

“Icarus is flying too close to the sun” – Bastille, Icarus

Aimless Nighttime Wandering With My Dog – Because I Couldn’t Take It Any More

Things I was going to consider posting about right now:

  • How last night I discovered the brilliance of reviewing products and got well over £200 worth of headphones for free, only paying for shipping from America.
  • How my fellow third wheel (who messages me every day), when he heard about my plan to push my body as far as physically sensible in a pool made me almost die laughing by replying, “NOT AS FAR AS YOU CAN” “MAD GIRL MAD” “SLOWLY” “SLOOOOOOOOWWWW” “GO MILD!!” because he knows me and my health pretty well.
  • How I completely ignored that and attempted to work out this morning using nothing but my staircase, managed a few press-ups (they are easier on an incline) and some other feeble attempt at using a muscle or two before my heart turned into a freight train and I… Sat down and decided it could be “leg day” instead.
  • How after that, my body involuntarily dragged me to what I hope was sleep and I have no idea how much of the day I lost, but my nephew woke me up after moving in and everything, and I had no idea what day or month it was.
  • The fact that when I woke up I did not look at all well. I mean, I’ve been worse – I’m not in the grim reaper’s hands yet.
  • That having my nephew living here is actually really nice, the problem is that my little brother tries to show off and turns into a sarcastic, cocky little… (deep breath, aaand calm)… when he is in the presence of another teenaged boy.
  • The fiasco of trying to inflate the beach lounger thing I bought online ages ago that arrived today, which was super comfortable so I sort of half passed out on it and stayed there for ages half asleep.
  • That watching the boys play basketball out in out cul-de-sac made me miss being able to do things so much that I took my dog for a very, very short walk, and when we returned we just hung out with the boys while they played basketball and sat there having infinite cuddles while they filmed each other attempting trick shots.
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My dog looking all moody and mysterious while sat in front of my neighbour’s car and leaning against me.
  • The crisis of Bob Jr. deciding that instead of keeping me alive he was going to give me half an hour’s warning before he ran out of battery and stopped infusing insulin into me… AND THERE WAS NOT A SINGLE AA BATTERY IN THE HOUSE.
  • The discovery that, after my dog and I went and hung out with them the second time, the boys (this isn’t fair on my nephew, it was just my little brother) produced such a level of annoyance that I couldn’t stand to be near them anymore.
  • MY SWIMMING STUFF ARRIVED
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I AM READY TO GO. All new everything because it turns out when you haven’t used your swimming stuff for five years and open your old swimming holdall… Everything in it has sort of disintegrated… And you find school socks from year eight or whatever (which was gross!). New start, new gear. A present to myself from student finance!
  • Went to a barbecue with all my mum’s work colleagues, at which everyone knew me and I only knew a couple, but they are lovely ladies and I got hugs and they talk to me like I’m one of their friends and they make me laugh until I cry…

Ok, well I kind of did just post about all of that. But it’s all been out of the water. Instead I want to explain why this photo happened tonight at 9pm:

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I know this photo is blurry but I thought it made it look awesome because it already has the slight fuzzing after image of my dog moving and this is a lesser degree of what happens to my vision EVERY TIME I MOVE MY EYES OR SOMETHING IN MY FIELD OF VISION MOVES. 
I want to explain why my dog ended up getting his second walk of the day (I am not in London, so I couldn’t go for a late night wander by the Thames and around central London like I would if I had been at uni), why I pushed a body that was already screaming at me, and had already made several people comment about how unwell I looked, just to get out of my house. Why, behind the screen of the phone that took this photo, I could no longer hold in my tears, and in empty streets I had the privacy to just let them fall (our village isn’t too busy). Why I left the food I had just cooked and just left the house to clear my head, because that is always what I did before, and I am on a scary path of ferocious determination to do what my body won’t let me all of a sudden, and it feels awesome but stupid and terrifying all at once. Why I didn’t return until after 10pm, after walking about half a mile in total with my very well behaved and completely amazing dog by my side.

My own flesh and blood. That’s why.

Because I was sick and tired of being made to feel like a second rate human being, like the family screw-up, by everyone. That’s why.

Because I didn’t dare talk to any other relatives about everything and certain members of our family are selfish and pathetic and petty. That’s why.

I can’t tell you more than that. I’m not allowed. I wouldn’t dare. It would cause world war  7 if anyone ever found out I’d told the entire internet. I don’t know how to talk about it right now. I am deeply, deeply hurt. It cut me to the bone. I overheard a phone call where one of our close relatives (smart people will figure this out from previous blog posts) who gets extremely outraged if they are not informed before everyone else about EVERYTHING that goes on with anyone living in this house, was phoned by mum mum so she could keep the peace and ask how their holiday went to appease them… And they started having a go at her because they had heard my exam result disaster from Aunty Cousin via a familial version of a chain of whispers. Knowing how unwell I am and have been (not in detail, but they know it was enough to put me in ICU a lot), and all the other stuff going on in my life and our lives, they… Nah do you know what I can’t even say. I can’t. It was pathetic. It was pure selfishness, and let’s just say I now want nothing to do with one set of grandparents. I’m that hurt by the selfishness of the attitude and the insensitivity and pure self centred nature that I have ignored for far too long and given far too many second chances to. Damn it, I said too much. I’m not deleting it. I don’t care. I’m angry. I emailed sincerely apologising, and said that I don’t want anything to do with the pair of them for a while because I am so hurt and they already knew the situation I was in and were selfish e-… No,  not doing this.

I walked my dog and I called my fellow third wheel and we just talked and talked for over an hour, until I was home and far beyond me walking through the front door, until our conversation diverted from him being as appalled as I was and me trying to hide the sound of my crying to us both talking about old school video games and guitar playing and sailing. I didn’t want to go back to the house. I just wanted to go for a run. For a split second I weighed up my options, whether collapsing was worth a short, short run my legs have craved for so long (running is no longer effortless and pleasant, as I discovered in hospital a while ago, it now hurts a lot everywhere, is a lot of effort, and makes my heart refuse to behave itself, ending in me on the floor and urgent medical care). But it was that bad. And I was wearing running shoes. And I was so close.

So I’m holding out for swimming tomorrow. Sport was always my release. It got me through forms of abuse and bullying and awful self esteem and no friends. It gave me life, it gave me a sense of meaning and purpose and the feeling that I was good at something and could achieve something with my life. I was top of the class for pretty much everything, but sport was something I actually wanted to be good at, something people admired and that I didn’t need to try and bury and hide like my grades. Sport was a release and a pick-me-up when things were bad and a reinforcement of pure joy when things were better. I wasn’t the ill kid when I was doing sport, I was like everyone else, and I was encouraged by a paediatric consultant (who ruined my life, started off my PTSD and almost killed me but hey) to participate in sport from a young age. I was going places. I could have gone places. And then my body. Said. No. But I need that release more than ever right now.

I feel so awful for existing, for burdening my family with the huge weight of my health issues and my incapability of doing right by anyone at the moment. Things were going to well, but there are no highs without the lows, and now I will appreciate swimming even more.

No way but through.

I’m sorry for whatever this post was.