3am Freakout (but it’s… good!)

3am. Wake up hurting. Wake up shaking and sweating and electric with fear. Another nightmare, no doubt about a hospital. Without really thinking, I play Pompeii and breathe a little easier as the sound of Bastille overrides the roar of my panic. What are all these notifications on my phone? The girls from the Bastille gig are freaking out about something. I’m being told to watch something in a separate conversation with one of them (the wonderful human who has travelled all the way from Manchester to see me). My IV pump alarms. I look to find 4 infusion sets snaking downwards and only three pumps. I stumble to the bathroom because the room itself feels way too big to be freaking out in and I don’t want to be anywhere near a hospital bed.

I go back to bed and glance sleepily at my phone. I see a message telling me to “WATCH THIS.” I’m like I’m terrified about tomorrow, I’m so so low, but she’s happy and that’ll make me happy. I expect it to be a YouTube video. And then I open the chat. And now my nurse is all

“How am I going to get you to sleep now?”

“I have never seen you this happy!”

“You’re wired!”

Because my friend, who came all the way from Manchester to visit me and spent the last two days sat in this hospital, went to a gig last night and met DAN SMITH (lead singer of Bastille, the band who make the music that saved all the parts of me that medicine kind of forgot / broke). And she got him to make another video for me (turns out she’s also been tweeting at him to come and visit me, which is just beyond adorable of her). I feel bad because he was just out trying to be a normal human and enjoy some free music, but also… This was SO well timed and as a result of that video, right now I just don’t care about my health situation. The reality that was eating me alive is buried beneath some words from a human who created the music that saved me. Yes, I may be sliced open within the next 12 hours but WHO CARES?! Yes, this situation is terrifying and overwhelming and I cannot deal with it but I DON’T HAVE TO FACE THOSE THOUGHTS RIGHT NOW. They are buried. They are down below rock bottom and I am up in the clouds. Because of a complete stranger with an incredible musical brain.

This is now the talk of the ward. I have been so sad that my consultant came in on his day off. I have been breaking to the point that everyone else was breaking with me. And when I saw that video (which started with my friend and then suddenly Dan Smith was on my phone screen and my sleepy brain took a while to acknowledge that he’d just said my name) I was so happy that people came running because they thought something was wrong because I spoke so loudly. 

I am beyond grateful. (My nurse is like “you were finally getting a good night’s sleep and now it’s ruined” but she also appreciates how amazing this is to someone who appreciates the music imagined by that man’s brain). 

Also, I’m smiling. Didn’t think I’d ever do that again. I’m smiling and it’s now past 4am and I just… I feel like I can face today now. I feel like I can face anything as long as this feeling stays, and if it doesn’t I’m just so glad it arrived for a little bit. It’s the break I needed. Bastille – back at it again with the saving me from my own mind.

That is all (please someone freak out with me because THE FEELS).

I am SHOOKETH. I really don’t deserve such incredible friends and such nice things. Life’s been rubbing salt in the wound lately and now I have like… some chips (or fries if you’re American) to sprinkle the salt on – wow I’m sorry for that metaphor I’m too tired to effectively think any more.

GUYS.

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Beyond The End

I never in a million years thought I would write the post you’re about to read. I was planning something different. I was planning an end. I was so low that finally there was nothing left of me that had any strength to keep clinging on with nothing to actually grasp. My existential crisis became more of a… decision, and I made the call to buckle under its unrelenting persuasion. I couldn’t find anything tangible. Couldn’t think of anything realistic to hope for. Was so defeated (hate using that word), so full of a (pathetic) despair that I was willing to do anything just to stop feeling so unwell for a moment. I wanted a break from a reality that I could no longer cope with, and could find nothing to help me handle. That’s not a luxury life grants often.

And then one of the girls I met at the Bastille concert asked me for my email address. It was late. I gave her my email. Shortly afterwards an email popped up in my inbox entitled “Bastille Union Chapel” which is where I’d seen them on the 22nd of May and also where my heart had rendered me a useless heap on the floor while they performed. It was from one of their management. I opened it. After a short “we heard you had to leave” message was a link. I clicked it. A video came up. A couple of members of Bastille sat in a room on chairs, and said hi to me. They said they were sorry I had to leave, they wished me well, and said I could go to any show I wanted. This was confirmed in a later email, and it doesn’t even matter that I can’t afford tickets.

I was (and still am) completely baffled. I wasn’t expecting anything like that to happen EVER and also I just really don’t feel like I deserve something like that because well… it’s just me, and my self hatred tells me someone else should get that experience in my place. 

Suddenly though, there was this genuine smile on my face, and this weird feeling so pleasant and foreign it was almost uncomfortable – happiness. I was happy. I still am. It felt like this huge thing built up within me fighting against the doom and gloom, and finally all the things eating me alive burned away and I took off. It felt like flying. It felt like freedom from chains my health had placed around my mind. I had been so empty and full of desperation and despair I was ready for the end, and suddenly there’s this smile that won’t leave. There’s something to hold on for, an end goal, a reason to the pointlessness it felt everything had become. I didn’t think I’d find that. I didn’t know how to be happy. I thought my heart had ruined everything. It feels weird to be happy. It feels wrong. It feels kind of unnerving but I can’t help it. I get to see that music live again. The thoughtfulness kind of hits me more than anything – that this girl I’d only just met messaged their management and made this happen, and it turns out my friends had been emailing and tweeting people too (I thought they were joking). 

Now suddenly I want the heart surgery to work, where before I’d been hoping the guy would slip and just set me free. I have this great thing to look forward to beyond the void I have to go through first. They’ve given me something to hold on for. 

People keep telling me I deserve this but I don’t. Far worse things happened in the world that night and it’s hardly the band’s fault that I had to leave, but this has happened at just the right time. Spooky. Undeserved. But SO AMAZING. I’m beyond grateful. Beyond appreciative. Beyond the end that I’d been planning.

Bastille – 1, Skippy (my heart) – 0

Oh how the tables have turned. Turns out Skippy couldn’t wreck things after all.

The Other Side

I love being in places where I get to escape from normal life – lecture theatres where I’m so interested and focused on what the lecturer is saying or on my friends’ conversation that I forget who I am for an hour or two, long walks through London where I lose myself in the sights of ever changing surroundings and awe overrides everything else, cinema screens and books where I can lose myself in an alternate reality…

I like whatever lets me hide from the reality that I can’t deal with. I am running (not literally – I wish!) but the things that I run from are never far behind me now; I feel the hot breath of the grim reaper on my neck (he just wants to say hi but I’m not ready to make his company again), I feel his hands clutching at my shoulders, closing too soon to get a hold (but only until I am too exhausted to keep any distance between us).

I had a good day, I spent my day running from reality, somehow turning my mind away from     as I met My Fellow Third Wheel after lectures and sat by Camden Loch talking and eating food.

I stood in a toilet cubicle halfway through the film HK Uni Friend and I went to see, and in the quiet, neutral space, I let reality hit. I know I cannot keep running and in that moment I thought it all through – the reality of the situation… And then I sucked it up, took a deep breath, and stepped back out into the world, wrapping myself back up in ignorance and denial… But there are emails in my inbox that I cannot ignore and there are things going on within me that I cannot hold off. How do you live when you know your body is trying to do the opposite? I don’t know how. You play pretend. You make believe. You just do.

There is nowhere other than… here. I have to carry this, and it’s a choice I made. For protection maybe? To protect who, I don’t know.

The end of the film, there was this other quiet moment where the titles rolled and I just sat there, briefly let everything catch up, and took a deep breath… And wanted to just… I don’t know, because that deep breath was all I needed to reset and go again. But there are these holes now, these fractures in the bubble of a denial that I cannot maintain.

I put on a persona and I try to maintain it – for everyone, for myself… I act like everything is ok when I know it isn’t, and most of the time it works, I am free from the weight that I carry.

I don’t want to be treated differently. I don’t want to be treated like a baby or made to feel weak and defective. I don’t like constantly being asked if I’m ok or told not to carry things or to take it slow, concern makes my skin crawl because it sets me apart and makes me feel defective and different. It means people draw attention to my health and it makes me feel a little alien (and when things are bad, I’m not an idiot, I do know, and I do stop, and sometimes it frustrates me that people think I’m oblivious). I don’t want sympathy or pity, and so I have to hide the things that induce all of the above. This is what lies on the other side of that. There is a reality that they don’t know.

“I will show you the view from the other side

This is the view from the other side”  – Hudson Taylor, Weapons

I will carry on (what other option is there – no way but through) but let’s be realistic. I don’t know how – not emotionally, but physically. I don’t know where this is going and I don’t know for how long this body can carry on like this. There is this huge great stretch of oblivion in front of me and I’ve no idea what lies beyond it. There’s fear. I pretend it isn’t there, but there’s a fear.

And on the outside, I deny myself and those around me any knowledge of that fear, of that intimidation. The squirming sensation that runs through me when I think about those emails in my inbox stays exactly there – inside me. People tell me to go to hospital for stuff as if it is this quick fix, and they have no idea what they are talking about. They have no idea what waits there – the doctors who I haven’t replied to for over a month now, the healthcare team whose emails and text messages I have left unanswered and unread (until Monday night, when I was slightly drunk and opened one in which other staff had been copied in, saying that multiple attempts had been made to contact me by multiple people and there were things we needed to discuss so could I be at the hospital tomorrow morning yes or no. I kind of had to reply to that one because it was worded so that I had to, and I  had to get rather drunk in order to even face doing so. I had to get drunk to deal with reality. In the email she asked how I was, as if she cares (I’m not going into why I say this, but these people don’t care about me personally). This is all about their jobs and ticking boxes, none of this is about me. I didn’t answer that part. She replied yesterday, foolishly thinking I was ready to re-engage with everything, in this message that went on about arranging appointments and moving ahead with treatment plans, and then again asked how am I doing?

Good question.

How am I doing? I can’t say the words to her, I can’t say them to my friends. I rarely admit them myself because why stop to pick through mud when I could keep myself clean and move on to other things? I don’t even say it here.

How am I doing?

I am tired all the time – not just sleepy tired (the sort that healthy people instantly think of and say that they feel too), but genuinely unable to keep my eyes open, barely able to hold myself up; it feels as though my muscles are sleeping too, under-fuelled and barely able to move my own bodyweight. I have been going home between lectures, trying to make notes and just falling asleep. On Monday I lost my entire afternoon. I’m not sure if I passed out or fell asleep, but I like the second option far better so I’m going with that. I’ve been doing this every afternoon – sleeping a huge chunk of my day away. I went to Brick lane with HK Uni Friend for more bagels that night, walking slowly, feeling every step, and got accidentally drunk on my return. I was up until 3am, at which point, unable to focus my vision or to see properly and with so many acidic bodies in my blood that I could taste them, I saved my own ass with injections that I still have no idea of the dosage, but that the amount of bloodied cotton wool around me when I woke tells me were given straight into a vein. I have this dizzy headache that goes right through me and most of the time I feel like I’m going to throw up, mostly due to the sickly sweet acidic taste in my mouth, but mostly because of what it means – the medical emergency that it means is almost fully brewed within me – acidosis.

I’ve started dreaming (I don’t class my flashback dreams as dreams, because they’re re-living stuff that actually happened and so much more real than a dream). I have nightmares about university, about what happens when this emergency becomes fully cooked and my body tries to make a break for oblivion… They are dreams where I am simply unsupported by university staff, or they try to kick me out or make me take a year out. It isn’t the near death that scares me, I’ve been there too many times, it’s what my uni will do, it’s being in a hospital, it’s losing another set of friends… It’t the everything else that my health tears apart.

Nobody has any idea how serious this is, how unwell I actually am (other than My Fellow Third Wheel, who, when I met him yesterday, pointed out that he’d been super worried because I have to be almost dead to say I feel unwell, and I’d told him that I felt unwell a few days before). Nobody has any idea what happens when I get home and shut the door. Most could not comprehend how I feel. The only thing I can compare part of it to is a hangover – the symptoms of a hangover are caused by dehydration and I become extremely dehydrated even though I usually drink about 16 litres a day. There are so many other feelings you add to that to get to how crappy I feel, and I don’t know what events to compare them to in a healthy person, but let me try this…

I guess combine that hangover with the flu, and then the energy levels of an ultra marathon runner who has just completed a race (y’know, where their legs can’t even hold them up any more and they are breathing deep and heavy), and then get your friend to stand on one leg on the middle of your chest while you’re sitting in a sauna trying to breathe thick air that won’t satisfy your lungs no matter how much of it you heave into them. Now add the kind of dizziness you feel when you hang upside-down for too long, mixed with the experience of trying to look through the lenses of a pair of glasses that you don’t need. Then add this feeling that your limbs are jelly and there’s the weight of a great big Labrador laid on every one of them when you try to move then, but when you just relax they feel like they’ve floated off. You’re cold, freezing cold, no matter how many jumpers you put on (or how many blankets you sleep under), even when everyone around you is sweating because it is so warm.

Mix this with the start of a migraine and the stage of being drunk where your words are slurring and you feel out of it but good (sometimes I just feel a little high when I’m unwell because my brain just can’t even). On top of this, you either haven’t passed urine for three days because your kidneys forgot how to kidney, and so have swollen up uncomfortably in your ankles and abdomen… or your feet are so swollen you feel like they might split and your abdomen is huge, but you’re peeing out about a litre every half hour (I swing wildly between all or nothing) and none of your clothes will fit over your swollen stomach which makes you feel overweight and horrible even though you know it’s just water. Along with this you’re tired like you stayed up for a solid 72 hours trying to finish your dissertation and can now hardly keep your eyes open (except you slept for at least half of those 72 hours, and you were just trying to human).

This is all eventually going to annoy your heart (which sometimes even causes the crazy water retention itself and is responsible for some of the junk above), but then adrenaline at some point gets involved, so throw in a heart rate of 160bpm with a blood pressure so low that you can’t really feel your peripheral pulse, and add a few palpitations and a pain in a very general left side of chest/left arm/left shoulder area. The fluid will at some point decide to accumulate around/in your lungs, so add a wheeze and uncontrollable coughing for a good five minutes where you cough until you settle into a crackling sound with every breath, which generates an even more intense dizziness. Now imagine that on top of that you’re passing out but you can’t let yourself pass out – your vision keeps fading to black while your eyes are open, and you feel yourself starting to go limp but somehow you hold it all together…

Then imagine that while all this is happening you’re sat in the middle of a lecture theatre (or on the London Underground, or in a cinema, or trying to write up your lecture notes) trying not to look as crap as you feel… And then you’re somewhere close to what my days are like (and you may understand why I have no sympathy for people who like to spend ages telling me how they are “dying” of a cold and couldn’t come to lectures yesterday because they had a sore throat. Please).

I’ve learned to carry on with feeling like this, I never know how I manage to and I never expect to, but somehow I haven’t passed out in any public places yet this uni year (although I do get stopped by concerned off-duty medical professionals or random strangers who note that I look like death). But then on top of that, imagine you start to slip into acidosis, and on a daily basis have to fashion your own rudimentary IV to try (and fail to completely) fix the situation.

When it gets worse than that, I fall onto my bed and just crash out for hours. I don’t wake up feeling rested. But it’s fine. I can deal with that, I just don’t know for how long my body can.

So I don’t know how to answer how are you doing? Especially when it is asked by someone who knows exactly how I will be doing and just left me to that situation previously. I have absolutely no confidence in her or the doctors she works with for that hiccup – they screwed up too many times, they came far too close to killing me with pure negligence (which their profuse apologies could not make better).

What she wants to hear is what everybody wants to hear, what I always say, and what only two people on the planet can see right through

I’m fine. (And I genuinely feel that I have no right to say anything otherwise really. Sure I feel a little rubbish and I look completely awful, but I’m not dead, and I’m not in hospital, and I am at uni and have friends, and I’m sorting my life out having finally ranted at my mother who is now acting like the other night never happened… I am so, so lucky. And this is just normal now).

We all ignore the other side. Everyone is happier that way, including me.

“It’ll cause you pain

It’ll make you cry

From the hopeless day to the sleepless night” – Hudson Taylor, Weapons

“If you don’t believe, it can’t hurt you” – Nothing But Thieves, Graveyard Whistling

But that doesn’t make it go away.

Unaccustomed

I haven’t posted for a few days because lectures are surprisingly exhausting, and I have returned to my first year panicked state of feeling guilty if my attention is given to anything other than uni work (I don’t mind, because finally I have something to fill my time, and I have been reminded of how in love I am with this degree).

I’m not really sure what’s going on with this blog. The format of my posts seems to be changing (by accident) and I have kind of gone back to rambling on about nothing in particular. One more post of awfulness and then I promise to try and shape this all into something I’m half pleased with.

25/09

I spent all day in bed so my body could recover from its brief encounter with (almost) acidosis. It responded by… going back into acidosis at 4pm. I’d been sleeping on and off all day and I felt so unwell that a small panic eventually began to bubble up at the thought of missing any university at all. I concluded that I probably hadn’t entirely got myself out of this situation the night before, dealt with it as best I could all over again, and started reading over physiology lecture slides in preparation for a return to what I can only describe as heaven on earth (known to the rest of my course mates as our university).

Hong Kong Uni Friend invited me to the cinema at 8. I could only stay awake for 5-10 minutes when she messaged me, and even then my eyes were heavy and hardly open. But I’m not being the unwell person this year, so I said yes. She paid for my ticket, and for a large popcorn and drink (it took me two hands to hold the drink alone, the portion sizes were so big!). When I met HK Uni Friend my abdomen was slightly distended. We watched it grow until I looked pregnant.

On the way home we encountered a drunk guy wandering up the steps to the Central Line. He was asking a couple where he should go and they clearly didn’t want anything to do with him. He stank of booze, and when I spoke to him he said he was having a bad day. He’s lost his friends, his phone, his Oyster card, and his jacket, and any memory of how on earth to get home. Eventually we worked out that if he got to Upminster, he could get a taxi home with his casino winnings (he’d just been kicked out for being too drunk). He was middle aged, very apologetic and embarrassed, and extremely wobbly on his feet. I said I’d show him where to go, he was going our way. HK Uni Friend didn’t say much, which seemed to be a wise decision, as I received many kisses on our one stop Central Line ride, and she escaped with none. I didn’t like some random guy kissing me on the cheek multiple times, and preferred when he just stood there saying we were very nice and that this demonstrated the circle of life (he said thank you more times than I do, which I thought was impossible!). As the tube pulled away I was so focussed on the drunk guy that I forgot to get my balance and stumbled over onto my foot. It rolled underneath me, twisting my ankle, and making my most lateral metatarsal scream (the foot bone behind your little toe).

I ignored the foot thing and we walked the guy to the next platform he needed and stood with him until the train arrived. He got onto the train still shouting thank you, and we left satisfied that he would at least get somewhere significantly nearer to his home.

I was introduced to the night guard of our accommodation, who had a long conversation in French with HK Uni Friend (whose family is actually french). HK Uni Friend had already warned him about me, and he said he’d almost come to my room the night before to check on me. We asked him to alter my key-card so that I had access to the gym. He gave me a form to fill out and went to do whatever needed to be done to make that a thing.

I experienced that awkward moment where the only “no” you can circle on a list of 14-15 health conditions/ issues that mean you’re unsafe to use a gym is Are you pregnant? (because my love life is as non-existent as the functioning of my beta cells, and my body is a poop).

It asked stuff along the lines of

  • Are you unaccustomed to strenuous exercise?
  • Do you or have you ever had chest pain or heart palpitations?
  • Do you have a heart condition?
  • Do you have a respiratory condition such as asthma?
  • Do you have a chronic illness such as diabetes, epilepsy… ?

And the list went on. He told me to be honest when I filled out the form and questioned whether I could or should actually use the gym. I told him it was fine and that I’d try to build up to stuff slowly. And then somehow at some point he learned that I’d spent an hour laying helplessly because I was too unwell to move, and decided that knocking on my door every night shift to make sure I was alright wasn’t enough of a precaution, and so made me put my mobile number into the mobile phone that the night porters carry with them, which will always be with a member of staff 24/7. I also took the number for reception. He said he had a duty of care for me and he wanted to make sure I was ok while i was living here. I kind of felt like I’d be safe here then.

HK Uni Friend showed me where to take my rubbish, and on the way we encountered a drunk guy stumbling over to the lift in her wing of the building covered from head to foot in the contents of his own stomach. We were pretty grossed out by this, as were the people hanging around reception, who were really friendly and chatted with us. Once again I was bought food, for which I felt completely awful, but HK Uni Friend said it wasn’t charity, she wanted to do it (which made me feel a tiny bit less awful and pathetic).

26/09

I woke up with a throbbing pain still in my foot. Upon removing my foot from the warmth of the covers, I discovered that most of it was purple, with a huge almost black “epicentre” over the metatarsal which I then realised (as the swelling had settled down a lot) stuck out in a way that it probably shouldn’t. I was pretty amused, so sent a picture to a couple of my course mates (I have discovered that biomedics seem to be intrigued by this sort of picture) who took one look and immediately decided that I had broken my foot. This resulted in them for the rest of the day pleading with me to go to the hospital as I limped around totally not bothered by the sharp pain. No thanks. Just no.

I left home 20 minutes before the lecture (which was literally on the other side of the road) started, with Bastille playing in my ears and a view of central London stretched out before me as I walked down the corridor. HK Uni Friend and Portsmouth Uni friend were both a little late to meet me, but we went into lectures anyway. My really good friend from last year who I always used to meet before lectures sat next to me. We hadn’t messaged for months because she was super stressed out by exams and I felt like nobody would really want to talk to me, but it was as if we’d never been apart. Being in lectures felt so, so good. I can’t even explain it. After two hours of human molecular biology (with a northern lecturer who gave off a Noel Gallagher sort of vibe and became significantly more upbeat when he’d had more coffee and got past all the boring “this person lectures you these weeks” stuff), we had a one hour break and then went into our physiology lecture.

After that, Uni Babe and I bumped into Uni Pal and Women’s Rugby Uni Friend (who we’d just been sitting with) in the shop opposite campus. They invited us to go to Stratford with them to get piercings, so we got on the bus and went with them. I had no money for a piercing and wouldn’t have gotten one even if I did (I am genuinely considering a tattoo though, and have been for the last year. I really, really want one to cover a surgery scar from radial artery surgery which people always mistake for a self harm scar). We were told to go back at four, so we sat and chatted about what lecturers they fancied and our personal tutors and other random junk. My lunch was paid for which made me almost want to cry with shame, although I was so hungry I felt sick so I eventually gave into their persistent offers and said yes-please-thank-you-sorry.

I spent my afternoon sat in a tattoo parlour drinking tea made by the tattoo apprentice, and in complete heaven due to the amount of art and awesome body art I was surrounded by. I watched people getting tattoos and I got talking to the lovely (and very talented) tattoo apprentice. I showed her some of my drawings, and then asked if I could look through her sketch book.  I went through it cover to cover and it was so awesome to talk to an artist and just get lost in a discussion about art. She was so talented and my favourite was a (not anatomically accurate at all but amazing looking) heart with blue major vessels, and the actual muscle itself made up of pink/ purple crystals. I discussed all her drawings with her but kept going back to that one. I took a picture of it (with her permission) as I decided that instead of an ECG trace over the line of my scar or an anatomically accurate heart in black and white, I wanted that one. So I finally figured out what tattoo I wanted while my friends got another cartilage piercing and (another) nipple piercing respectively (Uni Babe immediately bailed when we got to the place, and I’m not meant to have tattoos or whatever so…). They’re such an awesome group of people, they also have tattoos which makes them even more awesome in my eyes (I never used to see the appeal of tattoos, but now I’m not sure whether it is the fact that my health means I shouldn’t really get one, or the feeling of rebellion, or the genuine appreciation of the beauty of some of them, or the act of covering the scars that I’m not comfortable with… But I’m just drawn to the idea of them).

I felt like I was going to pass out multiple times, and couldn’t work out why. There was an undercurrent of awfulness, but I was more focussed on my foot and arguing about why I refused to go to hospital for such a teeny tiny thing as an annoyed metatarsal. As we wandered back through Mile End, it was pointed out the “You look like you’re actually pregnant!” I’m pretty conscious of my swelling when it happens, and I felt super embarrassed. Uni Pal told them that when we’d gone out the other week I’d looked pregnant with triplets. I feel like I should probably get that issue sorted…

I finished my lecture notes from that day of lectures (I made notes before the lectures from the slides, then during the lectures from what the lecturer added, and then combined them all afterwards into detailed notes from which I then made a revision sheet). I do not want to fall behind this year. It took me until midnight but I loved every second and I was driven by this unshakable desire to just… Fill every empty corner of my brain with knowledge, I guess.

And then I realised I was back in the early stages of acidosis. I’d been fighting it all afternoon and still hadn’t shaken it off again (because I needed IVs to do that properly and I’ve no intention of going to seek the help of people who could sort that out under any circumstances right now). I know I can’t hold it off, but there’s this huge mental block between me and hospitals. I can’t even pick up the phone or reply to an email if I know there’s a doctor or nurse at the other end at the moment. I shake. And I’m too afraid of the university’s reaction to miss even one lecture (which some already had just one day in!). I patiently waited, and moderately panicked, until I had the energy to lift my head off of the pillow, made it to the sink, and just drank and drank and drank. I don’t usually panic about my health, and I wasn’t panicking about what was going on inside of me, I was panicking about the effect it would have, the reaction of my university, the things it would take from me… How messed up is that?

I ended up getting into the shower at 1am, after my 12th nosebleed of the day. I put on a Jenna+Julien podcast (the background sound to my day) and ate some food. I fell asleep to a recording of that day’s lectures, listening to my friend’s personal tutor talking about the C-value paradox and tandemly repeated DNA segments. Because that was all that mattered to me. I have uni back, I’m back living my dream, and my life has something in it again. Uni is my life and my life is uni. It’s like a comfort blanket. I love it here .

The panic, the pressure, the throwing away all other interests and putting away the non-fiction book I’ve been reading so I can re-read the paperback I have about epigenetics… It has begun again. The pressure is unreal, and I’m just constantly terrified, almost phobic… about becoming unwell, or ending up in hospital, or missing even a single thing. Yes it is stress and pressure, and being back at uni is unreal in terms of exhaustion. But… I love it (even though I’ve become a little unaccustomed to it). I feel alive. It makes me feel like I have a life.

And that’s all I wanted, for so long. To go to uni. To feel alive.

Never underestimate the power of an education.

For me, there’s no way but uni. Without this place I could never have kept going.

Something About Nothing

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

20/09/16

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

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

21/09/16

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

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

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

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

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

22/09/16

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

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

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

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

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

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

 

Back Home In The City I Love

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

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

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

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

(Change of tense here, because why not?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There’s just a week between me and that.

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

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

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

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

No way but through thankful.

 

Can, Can’t, Shouldn’t… But Will.

It isn’t even a case of mind over matter. My mind is there, living in the synthetic illusion that my body is capable of the things I want it to be capable of. It is ready. In my mind, my goals are perfectly achievable, and I seem to have convinced myself of that.

But I am physically incapable. My body just can’t. I push it, I become convinced it can and will manage the things I ask of it and it just isn’t there – my heart just isn’t ready. I got it into my mind that I just needed to push through the difficulties, that after a few minutes longer (than is comfortable) of attempted gentle exercise, the awfulness would subside; but four hours after swimming a mere ten lengths, I found myself paying the price. For the first time there was disappointment alongside this sensation. Because when I say that I was paying the price, I mean that in my physical state I was bankrupt. Was it worth this? (Yes) Really? (…No. Wait, why do I even have to weigh up these odds?) I laid out on the bed, feeling as though I were breathing the air from a steam room – it was thick and heavy, an effort to inhale, not satisfying to my lungs no matter how deeply or slowly I breathed. I had no energy, my heart was racing and there was an ache in my chest. My body just cannot.

No amount of hoping or denial will change that. My dreams of running or swimming with university societies and settling into the structure of regular, casual training (not to compete… ok to compete at some stage… but for social reasons too) are exactly that – dreams, separate from reality. Let go. Come on, accept. Move on. I thought to myself over and over.

How do you do that? How do you give up on a dream that to most people is an effortless normality? How do you stop reaching out for all that your teenaged/ childhood self wanted? Not success, not major competition (although low level competition would be awesome) I just. Want. To run. One lap of a track. One swimming session where I don’t feel like this afterwards, where my muscles can work at maximum effort for even half a length – proper maximum, not the limits my heart imposes upon them but their true capability.

The answer is simple. You don’t.

You just don’t.

You live for the moments before those that make you question it all.

You accept reality… and then you dismiss it.

I went from, I can’t do this to my body. [My cardiologist] was right. I can’t swim again. I feel broken. So many regrets about getting in that pool. I can’t breathe STILL. No more. No swimming. No running. Who am I kidding? Let’s be real. This body cannot do those things. Time to let go and scale down our ambition.

To…

Screw it, I’m swimming in the morning. Body, screw you, get over yourself. 

But realistically no, I should not be swimming. If I listen to my body, I should just take it easy and find a way to get my entire self used to any level of activity before I get in a pool (and even then my cardiologist was more or less all “do something where you aren’t going to drown if things go wrong”). The trouble is, any level of activity above walking (and sometimes even that) is too strenuous for me at the moment. So my theory is that I might feel completely awful, but in pushing my body it will learn to adapt with the new demand on it. There’s no other way to make it learn other than to force it to. So far this plan is not working. That plan belongs in the land of denial, and in reality it just doesn’t produce results (at least not positive ones).

The thing is, I could do it. Swim properly, I mean. I could do it. I have the technique and I try to move in a way that allows me to put that technique to use; but once my heart says no, I don’t have the energy to pull (which is all I can manage, because flutter kick is death), my muscles scream, and I feel like I’m drowning.

I laid there late into the night and I felt so unwell. I felt… limited. And I let it all sink in, I let reality breach the walls of my denial and seep through the cracks of my hopeful ignorance.

This body can’t. 

But I’ll break it trying… (this isn’t even a realistic thought, it’s a thought I seem to think in order to force optimism upon myself, and I hide behind stuff like that a little) Is it worth breaking it? (Sensible finally hit me).

Dilemma.

Over the next two days I swam again. 10 lengths and 15 lengths on the second day. 20 on the third. For the first time since my health properly hiccuped, I swam two lengths of a pool without stopping to catch my breath. And the next day I repeated the achievement and swam three lengths before the world started to fade to black even though my eyes were wide open. I couldn’t kick in any stroke other than breast stroke, and all my strokes were slow so I could focus on technique (as I don’t have speed or power). Despite the fact that when I swam front crawl I could only pull and was the only one in the pool not doing full stroke, I was faster than anyone else in the pool. And it was easier than it had been on that first night. I got out of the pool and my heart was racing (it continued to do so for hours). Initially, my lips where pale and blue, and my fingertips were drained of all colour. That fixed itself as my heart decided to slow a tiny bit and rectify this issue.

A few weeks ago I’d been able to swim 61 lengths before I felt how I did on that first night. And I think that’s what shocked me, what made it all hit home. A stubborn stupidity is what made me try again. Inevitably each time I feel lousy afterwards, but I’m starting to build some sort of agreement with my body. When it tells me to stop, I sort of do now (after I test it and push on a little more. But a little more is less than telling myself I can’t stop until I’ve done another ten lengths – which ended very badly and resulted in me almost losing consciousness in a swimming pool).

Life is about accepting new limitations. Or is it? Is it not instead about pushing them? Maybe not, maybe that makes you take ten steps back and either way your body starts to feel like a prison. Maybe life is about finding your limitations, acknowledging them, and working with them – about finding a balance between not letting them rule you, and ignoring them until they bring you to your knees to remind you they are there. 

I could spit out this optimism and tell you that I won’t back down, give it all the talk that I am stronger than whatever and will achieve the things I set out to. But that feels false. Because I say those things, but realistically there’s a very real chance that I will fall far short of the places where I aim to go. Those words bubble from denial, but they also stem from a determination that likes to rumble on in the background. My body told me no, and my brain finally backed down and listened to it… briefly. Because I know how hard this is going to be, but part of me is still convinced that it is worth it. And none of me knows how to let go. This is stupidity, stubbornness, an inability to let go, a hopeless dream of being something I will realistically never be.

But life is full of hopeless dreams, and this particular hopeless dream just happens to be my reason for getting out of bed in the morning.

So yeah… This is the other narrative of my mini-break with my mum. I gave up completely, and then I got up the next day and tried again. And it wasn’t so bad the next time, my body wasn’t so outraged (it wasn’t happy, but I could function). To be honest, I expected to be left very unwell again (and I’d felt unwell enough to decide that swimming wasn’t worth it, and if you know how much I love swimming, you’ll understand how awful I felt). But this little part of me was kind of defiant. It was curious. It wanted to try again, with no expectation of itself, and then anything felt like an achievement.

I guess the point is (oh hey I seem to have just thought up a point to this post) don’t give up. Three words that are so easy to write but so difficult to stand by. Perhaps a better way to say it is…

Do give up. Stop. Stand back. Detach. Pause. And think. And let it all go, give up, give in. It’s ok. When you feel like giving it all up and letting it all go, you probably need to. It’s your mind’s way of asking for a break, I guess. And give it that break. Let yourself breathe. The crushing weight of the feelings that drove you to want to quit is unbearable, and giving into it feels so right and so wrong all at the same time. Don’t give up on yourself, or on being on the planet, but briefly let yourself let go of the things that your REALISTIC thought processes tell you that you need to step away from. But wake up the next day, and even if you don’t want to, even if you think it’s pointless, try again. And see what happens. And if it’s crap, then fair enough. But if it is crap, my brain occasionally kind of whispers “one more chance, one more time” and then I (very, very stupidly) try again, a refusal to accept my incapability makes me repeat the process over and over, trying and failing in hope that one day I will try without failing. Is life about the results? Or is it about the journey? I don’t know. But I do know that perseverance is difficult. I also know that it pays.

No way but through. 

 

(On the subject of water, I’m kind of reminded of the weather (yes, how stereotypically British of me to talk about the weather). But the weather here right now is weird. Yesterday my mum and I drove home to 32.5 degrees of heat. Today as we drove to see the new Bridget Jones film, the sky was so thick with cloud that it was dark, it was only 14 degrees. It has rained non-stop all day causing flash floods all over the country – train stations have had platforms submerged under water, motorways are flooded, so many towns have lost streets and streets to feet of water, a landslide derailed a train and pushed it into the path of an oncoming train… I mean… British weather is a temperamental beast. Summer one day, almost winter the next! But I kind of love it. It’s been so humid – and strangely free of rain – that we’ve all been hoping for rain for days!)

It Meant The World

Nobody seems to like the posts that I write when I’m happy, where I talk about all the good stuff. This is probably because stuff that is good to me is boring and normal in the eyes of most, and it means that often, I don’t share the good. I don’t need to let the good things out, I like to hold onto them, but you guys read along through all of the bad, and part of me feels that you should share in the good times too. So… warning: This post, and the continuation of it that I shall post immediately afterwards, is about a really, really nice few days. It’s about my first ever spa experience, which I went to with my mum, and I even managed not to make her want to murder me (although she did tire of my company at times). It’s about my amazing, amazing unofficial family member across the pond, and the brilliance of WordPress’s comment feature (which is actually how we “met”). It’s about gifts I didn’t deserve at all. It’s about good times. And I’m sorry if that’s boring. But I’m not sorry if nobody likes it, I guess. Because I just remembered that I started this blog to help myself, and it has done and continues to do exactly that. This is my pressure-free blog. This one is the one where I feel the pressure to re-read and limit what I write.

13th September. Day 1:

Bags packed this morning in a hurry, my mum and I took my dad’s car, and drove off.

I received a package from someone I met through this blog (I say just “someone” but she’s actually a very dear friend to me, and she feels like family). She lives across the pond in America, so I had to go to the post office to pay the customs charges and collect the parcel she had sent. I opened it in the car to find a card saying that she was thinking of me, and a silver necklace.

Processed with MOLDIV
The dark bits on the necklace are actually dark blue, which is one of my favourite colours. HOW AMAZING IS THE HUMAN THAT SENT ME THESE? (Beyond words, is the answer to that question)

The necklace is a hamsa hand (according to the internet). I felt all the feels upon opening the gift, but I felt them even more when I learnt what it meant. The necklace is meant to represent the hand of god (of any faith, apparently). According to this source, “The Hamsa Hand is an ancient Middle Eastern amulet symbolizing the Hand of God. In all faiths it is a protective sign. It brings it’s owner happiness, luck, health, and good fortune.” And then that necklace meant the world to me. THE WORLD (you hear that friend across the pond, it meant, it means… THE WORLD). I was, and still am, incredibly touched by her kindness. And figuring out when it would have been sent, and when I was first told that she would be sending me something, it meant even more because it was so appropriately timed. I rode that high all day. I may still be riding it. I’m still wearing the necklace. I’d like happiness, luck, health and good fortune. I already have all, actually, because in comparison to some I have it beyond easy.

I then looked at my phone and saw a comment from yet another wonderful human across the pond who seems to enjoy reading along with my blog, and is a veterinarian… I felt all the feels all over again. But genuinely, every single comment I get makes me feel all the feels. This one was just touching and I still struggle to wrap my head around the fact that people who follow this blog actually… Follow my life, I guess.

We drove on, my smile almost as bight as the sun (which was beating down relentlessly). It was hot and humid, and near where we live in Kent, a temperature of 34 degrees Celcius was recorded (hottest September day for 65 years I think). As a brit, I am not used to hot summers. I’m used to summers that feel like winter but with shorter nights and warmer rain. My heart doesn’t like the heat, nor does any of my body, actually. It was so hot and humid out that I stepped out of the lovely air conditioned car and felt like I was standing with someone breathing on me. It was 32.5 degrees where we stopped for lunch in a lovely little old country pub, and the thick air was like hot breath in my face.

I’ve never experienced a spa before, or a fancy hotel. I was awestruck from the moment we walked into the place. We paid a ridiculously small fraction of the price for our room (which we would never have even dreamed of being able to afford at full price), and as they messed up our booking we were upgraded to a “superior” room.

It reminded me of a hospital (without the trauma and the terror and the illness…) in that everyone walks around in dressing gowns and slippers (… but nobody judges you or gives you pitying looks), and the staff constantly ask if people are ok and if there is anything they can do to help. Honestly, my brain found it surreal. The staff treated you like you mattered in a world where few of us really do. I felt awkward and out of place being treated so strangely, but I learned to relax. My mum kept telling me that the things I was so astonished by were normal for health clubs and spas, but I was honestly blown away by everything.

Reviews slated the amazing place we stayed at, saying it was run down and not worth the money, but it was so above anywhere I’ve been before and I thought it was really fancy. Yes most of the walls had scuff marks, some had mysterious dents, and a lot of the paintwork was cracked or chipped and peeling… Yes, there was quite a lot of mould between the tiles of the swimming pool, and a light dusting of it on the plastic grates that covered the overflow bit from the pool… And yes, the carpet in our room had a big hill in it where it had been pulled up and not put back down properly… But the place was so, so fancy and the staff and the service (and the food) were BEYOND amazing and so much nicer than anything I’d ever experienced before.

The first thing I wanted to do was swim. So I did. I could go on about how astonished I was that they provided towels for you, or that the showers had shampoo and conditioner dispensers but… Oh wait, I just did. Anyway, I swam 10 lengths of a 25m pool. After 4, I was tired. After 10, I wasn’t too tired to carry on, but I was tired enough to stop. The wheezing and crackly cough hit me in the shower. I was breathless for an hour afterwards, and very surprised at how little it had taken to make me feel so awful.

The pain from my procedure last week had reduced to a moderate discomfort. We were still querying the possibility of a post-op infection (even though the doctors gave me a course of antibiotics to prevent infection in light of my immune system’s tendency to open to doors and let any old germ in). During dinner, the mild discomfort grew to a roar. I was sat hitting my legs together under the table, unable to sit still from the pain. We headed back to our room instead of wandering round the grounds, because I was in too much pain to human, and also I didn’t want to miss The Last Leg (it’s a tv show with three awesome humans running it, and to my delight during the Paralympics it is now on every night).

Three hours after my swim, Skippy (my heart) was still unhappy, and he was letting everybody know about it. And yet, I was thrilled at the idea of being able to just wake up and swim. Also, I almost gave up on the idea of exercise – my heart just cannot cope right now. I wrote an entire piece in my notebook about it, which I will probably post today or tomorrow, but it made me question a lot of things.

If I were healthier, I’d come here and put my body through hell in the pool and the gym – focus intently on training, and then try a bunch of spa treatments (not that I could actually afford any spa treatments). It seems to be a prime retreat for “gym bunnies” as I’ve heard them called.

Day 2 (sorry guys, it goes on):

My mum woke me up at 8:15. She woke. Me. Up. I haven’t had such a good night’s sleep in ages. I slept enough to dream between the terrifying hospital nightmares that are apparently inevitable. I had a bad dream about my uni parents (nowhere near the scale of the nightmares where I relive my most traumatic experiences). I went back to uni and they acted like I didn’t exist, they told me off for ever talking to them ever, and treated me like crap. I don’t think I could ever talk to them anyway. Maybe Uni Mum. Speaking of mums…

It’s weird being with my mum. It’s nice to be with just her, but it’s awkward. She doesn’t listen when I try to make smalltalk – she visibly zones out or just sits playing on her phone or messaging her friends the entire time. She said that she doesn’t know what to talk to me about. And I realised we have hardly anything in common, and that she knows nothing about my life now (she thinks she does, but simple stuff like “I’ve never seen you where this top before” when I’ve been wearing it at uni almost every other day for the last month… She knows the bit of my life she sees in her house, and that person isn’t me. That house isn’t my home). Our conversation became very… Functional. Each one seems to have to serve a purpose and so starts with questions such as:

“What time do we need to leave on Saturday?” (I move into my new uni accommodation on Saturday, and therefore will be home, back in LONDON. I love that city far too much).

“Did you bring enough clothes?”

“What food are you going to cook for your first dinner?”

“Where are you going to put _____”

“What clothes did you pack?”

I felt like most of the time she ignored all the nice conversation we’d had, the civil conversations, and just got all stressy and started telling me that I was talking to her wrong. Which made me not want to bother. Which made my tone slip up. Which made her angry, and rightly so, I guess.

After a fancy buffet breakfast, where waiters poured our drinks for us and brought us tea in our dressing gowns, and the butter was whipped and came in little shell shaped china dishes… I went for another swim. I managed 15 lengths of the pool and felt relatively ok afterwards – or at least, nothing like last night. My mum (who never, ever swims because she… can’t really swim and hates getting her hair wet and stuff) got in the swimming pool and swam a couple of lengths.

I’m not good at being in a hotel – I made the bed all nicely and tidied the room before the maid came, because I found it weird to think of others doing those things for us and it made me feel bad. My mum and I went for a slow walk around the grounds. We sat by a pristine football pitch – professional athletes, footballers, actors and models had stayed in the place we were staying at, and I just sat and watched the mist on the hills in the distance. I was knackered from my swim, so when my (completely inactive but for some reason suddenly adventurous) mother decided to take us back to reception and hire bikes, I was glad when she settled for a game of table tennis instead and a smoothie.

Lunch was another buffet, but it was the fanciest buffet I’ve ever seen. All of our food was complimentary, and it said we were allowed a three course lunch. They didn’t specify whether it had to be three different courses or not, so naturally I had three mains (I started with a plate of potatoes, rice, noodles, veg, 2 fillets of fish, chicken… Moved on to a huge bowl of noodles which the chef cooked in front of us… And then had a plate of just salmon, some random white fish, and chicken)… Then I realised nobody was paying any attention to what we ate, so I had three desserts too. My mum said that I’d “taken healthy eating and made it… eating.” And that it would have been healthy eating if I hadn’t eaten the equivalent of lunch for a week.

We read books and I got another smoothie, and then we went to the thalassotherapy pool, a treatment which was complimentary with our stay. It’s basically a huge circular salt water pool of bubbles and water jets, and you sort of just get beaten up by salt water for 50 minutes, which is meant to give you a full body massage. They said if you had diabetes or heart problems or low blood pressure or had any minor surgery lately (and many, many other health hiccups that I can’t be bothered to list) then you shouldn’t do it (I had a lot of the stuff). I looked at my mum. She looked at me. Nobody else moved and I was too embarrassed to leave the room or anything, so I shrugged and just got in the pool. It was amazing. The water jets were under such high pressure that they hurt you if you got too close, and pushed you into the middle of the pool if you didn’t hold onto the rail, but in just the right position it was sooooo nice. I’ve never had a massage before, and I left the salt water feeling really heavy and sleepy, but it was so, so nice I wish I could experience it again someday.

I walked straight out of the thalassotherapy pool and got back in the swimming pool, because something kept pulling me back to the water. I swam 10 lengths. For the first time since I swam for a club (so… since I was… 14?) I managed 2 lengths with no pause in between. It was a gentle, slow breast stroke, but it was efficient and I was so happy to have managed two consecutive lengths. I switched to freestyle (I can’t do full stroke, because flutter kick kills my heart). I had the lowest stroke rate in the pool by a fair way, and was the only one swimming freestyle with no kick, but I was the fastest, somehow. I focussed intently on technique, trying to start off with a good technique so that as I train more I will develop good habits. If I had the energy to kick as well, or to pull at a faster rate, I’d be good at this. I’d be fast. I thought to myself. My mum swam with me again. I taught her how to do breaststroke kick, because she was doing dome weird scissor kick and holding her body at a weird angle in the water. She couldn’t move forward very far at all with each effort, and I kind of realised that my body was a little bit superhuman to be able to get through everything I put it through and be able to move pretty well from one end of a pool to the other.

I went in the steam room with my mum afterwards. I wasn’t meant to, because my heart hates heat. I hated it. It made me feel ill. The air was thick and my lungs already thought they were breathing soup (I thought it might clear them, but my theory was wrong). I felt it in my chest, the swim. The tightness and the wheeze settled in, and my heart was aching and wouldn’t calm down. But this time I was sure that the swim had been worth it.

On the first night of our stay I tried scallops, which I’d never had in my life, but we were only charged £2 for because the meal was complimentary… I repeated this on the second night, because I couldn’t decide what they actually tasted of… (And I’m still not sure). Over dinner tonight, I brought up the subject of swimming at university, and how I want to swim more for the social side of things than to seriously compete. My mum knows I was told not to swim, but she also knows that I’m going to anyway, so she didn’t say anything. Until I said that you need to swim 100m in 1:30 to make the competitive squad, and she looked up at me and said, “You could probably do that, actually… But don’t.”

25m of pull takes me 30 seconds or just under (I keep my stroke rate low to focus on technique)… But I couldn’t do four lengths of full stroke. So… Nope.

My uni friend who used to live in Hong Kong messaged me when we got back to the room to tell me she’d bought me two t-shirts because they just made her think of me. She sent me pictures of them. I felt so awful that she’d bought me things that I apologised to her. She ignored it and laughed on with me. The t-shirts are humorous t-shirts which are VERY “me” and I was really shocked that she’d bought me gifts as my birthday isn’t until the start of March! I felt all the feels all over again. People are too nice. Too. Nice. I really don’t deserve these things, any of them.

I’m not sure what this post was, it was happy me, I guess. I’ve had no access to wifi so I’m posting it all in one big boring post. Ok ew this post is long, I’m really sorry.

This break with my mum, the gifts, that comment… All of it meant the world to me. On the day that stuff like this doesn’t, feel free to slap me.

The “So Much” & The “Something”

Sometimes you stumble across moments in life that make your thoughts stop and your mind boggle. They are weird little moments where a realisation hits you, and things slip into place – impassable mountain ranges falling at your feet as the tectonic plates of whatever you were facing move apart. They are moments that you don’t reach alone. They are moments that you never think will come, and they wrap you in the security of knowledge… a new knowledge that not everything will be ok, but something will. This something, the something that relieved the pressure… I thought it was the thought of running again (a journey which I have started blogging about here – please feel free to check out my new blog if you haven’t already, any support at all is much appreciated). Being given the go-ahead to try to build up to some form of exercise again took the tension out of the rugged landscape of my mind, and, although it didn’t flatten any mountains, it gave me the equipment that I’d need to scale them, to face the future no matter how much I didn’t want to. It made the volcanoes that had been spewing suicidal thoughts become dormant, prone to quiet rumblings and occasional steaming instead of violent eruptions that killed my determination.

But I now know that people do that too. A small part of me remembered that they could, because my uni-parents did exactly that last November. They flattened landscapes, and when I fell through the cracks in rock bottom that opened beneath my feet, they walked through the fiery magma alongside me… But it burned them, and like everyone I’ve ever depended on, they backed away and I was left alone. I’ve never thought of myself as somebody worth standing by, as somebody who anybody would want to be there for. I am a drain, and I am fully aware of that. I sap life out of all those around me, and I watch it in their faces. It kills me to watch it, and being unable to trust tears me apart… so I withdraw. I retreat. I end up even more alone, and I feel even more of a burden, and it spirals and spirals as I grow more and more distant.

Along with the amazing extra family I have gained across the pond (the best thing that has come out of this blog – you know exactly who you are), two friends have been there throughout this summer. Neither of them really knew how to be, neither of them really understood or appreciated the depth of what I was going through, but for some reason they stuck by me; and when the downward spiral began, although I still ended up in some very dark places without their knowledge and nearly did some very drastic things, they unknowingly pulled me back a little at times, when there something left for them to save. A lot of the times the things they were trying to talk me through were bigger than they were. A lot of times my fellow third wheel was miles off the mark and I became frustrated… but they were willing to do what nobody else was – be there. Try. Try to find words, give up finding words, join me in the crapness of it all, laugh and distract and push me to talk about things that I never can to them. Even when I didn’t ask (knowing that I never would and didn’t know how to). Even when I pushed them away. That isn’t enough to save a person. It isn’t even enough to make things feel better, until you’re through the worst, and you’re past the moment that I described in the first paragraph of that post. And then you look back and pull all the good from the wreckage that nearly took… you.

And today, with the thought of running again playing on loop over the roar of the sensation of impending doom, I had my moment. Today I was reminded how amazing it feels to not have to face physically go through things alone (I am at the stage where nobody knows the full situation, and I no longer want them to. Nobody is physically there, and I no longer want them to be. I prefer to keep them at an arm’s length from the things that are tearing me apart. Like I said, I withdraw. I don’t talk. I’m not good at it. It’s the whole reason I need this blog). When you let the big things go, you can appreciate the beauty of the little things. When you step out from underneath the shadow of fear or dread or somehow make it through the feeling that the only way to get through is to never meet the future at all… Life gives you this brief moment to inhale. To breathe. To feel anything at all, one more time. And the strength that you had to build to hold up the weight of everything for so long… It makes you a force to be reckoned with. It makes you do stupid things, like decide you’re going to run a marathon next year. And you’re hollow, and you’re hurting, and you’re numb and you don’t even know how to feel again let alone what to feel, until someone picks you up and pushes you on.

Uni Pal pushes me on. A lot. We made a little pact to train for a marathon together (actually, she told me I had no option) and the second slightly tipsy me told her how I’d been feeling lately, she made me promise to tell her any time if I felt like that again. I said yes and meant no. But today we were messaging. And she asked about my (minor) surgery next Wednesday. I’m going through the whole thing alone, and am not allowed to leave the hospital alone afterwards (because hey, general anaesthetic). They told me to take somebody with me. But I have nobody to take with me. My mum already made plans with her friend… Not that I’m even really sure I’d want her there. I never usually have anyone there when I go into surgery, or beforehand. I just message people when it’s over, and if it’s something I’m scared of, I say a little insurance “you need to know how much you mean to me” the morning of the surgery. I’m sort of just used to doing health stuff by myself. I’m used to carrying the weight. I’m used to the emotional injuries inflicted by being crushed and buried under that weight. And then Uni Pal asked if anyone was going with me, and I said no, but that she didn’t need to worry. She asked what time Id be getting there, because she lives so close to the hospital and can drop by before she starts work at 9, and I told her not to worry because hospitals. Eventually, after asking and asking she just put,

“And also 7am is not that early, see you there” (and then the banana emoji, because as I mentioned before, when I’m an idiot she calls me a banana, so we call each other banana pals… it’s weird but hey I like it)

Another message,

“As long as I leave by 9ish to be at work, that’s absolutely fine”

My response was a shocked face and an entire line of crying faces. I think that sums up my brain’s reaction rather well. I didn’t cry, but I had a moment. A moment like the one I started this post by describing.

“I don’t even know what to say to you, you” (and then I put the banana emoji, because I thought she was being stupid to burden herself with me) but I couldn’t even express what was going on in my mind, the complete shock. The… nice… shock. I tried again

“I… What.” Nope, I could not words.

“Don’t be a (banana) of course I’ll be there!!” and the message finished with “but it’s now in my diary so”

And that was it. Genuinely, that was it. There was a huge tectonic shift inside of my brain and all these mountains were flattened. I wanted to dive into my phone and hug her. I smiled, one of those great big uncontrollable ones. I stood up. And I looked back from a different point of view over the summer that almost completely broke me. I don’t know what I would have done without my Uni Pal.

And this isn’t the post I was supposed to write. I meant to say this:

  • After yesterday, I view my little brother as an actual human instead of an extension of his games console, and it was just the two of us home alone with my dog, so I decided to order us both pizza for lunch with some of the last dregs of my student loan.
  • Uni mum replied to the message I sent her 8 days ago, asking if tomorrow would be a good day to FaceTime and also enquiring as to whether or not I have my exam results yet. Hearing from her made me STUPIDLY happy, and Uni Pal was stupidly happy for me because I had to share my stupid levels of happiness with her (she knows uni mum is one of the only two people on the planet that I trust and can talk to about ANYTHING. She’s flaky, and she drops me like a hot brick for no reason and ignores me for months at a time, but when she’s there again none of that matters and my brain gets all… Yeah).
  • Just as I was tucking into my half of the GIANT pepperoni pizza we ordered, one of the hospitals I go to in London called and asked me to go there today or on Monday so that they can check out Skippy (my heart) before I have my general anaesthetic on Wednesday.
  • Someone I met through this blog, who makes me feel like part of her family, asked me to be part of a project she is starting (we also hope to some day write a book or two together) and I was SO touched because I know the story behind it and the amazing little girl that has inspired it all, and I’m honoured to even have been thought of.
  • I started packing for uni last night, and immediately found myself in HEAVEN. I got so ridiculously excited and I was messaging my fellow third wheel and he got excited with me (especially as he will be coming to stay with me at times), and then we both got excited about the mini-breaks we have coming up, and we just had random conversations until the early hours of this morning (we do this most nights, but last night we were both just in super good moods… Until the end). I found a couple of self-help fill in books while I was sorting my stuff, and discovered a heavy repetitiveness of what was getting me down. There were three things (number 2 was most consistent, number 3 was only when I was in my parents’ house).
    1. My health is so much worse than anybody knows, I might die, and nobody knows. I don’t know how to cope alone and I can’t talk no matter how much I try to, and I don’t trust anyone.
    2. “I want to run/ swim/ sail again” “What if I never run again?” “I need to go for a long run, that’s all I want” “I miss sport” “I can’t do any of the things that made me who I was, and now I don’t know who I am” “I wish I could run” (didn’t realise quite how much of a deal this was to me until I say stuff like that on almost every page, which is why running again is going to cause such a transformation in my mental state). On one page it had a huge box that said When was the last time you were happy? and all I wrote was “Last time I went for a run”…
    3. My dad (technically stepdad) makes me hate myself. I’m a huge disappointment to him. He hates the very fact that I exist. He doesn’t talk to me unless it’s to criticise me or to shout. I will never do right by him. He doesn’t even need to pick holes in me any more I already hate myself on behalf of him, over time he’s taught me that I am nothing, without even having to say the words. On one page it said, Name things you’ve never done (but want to). I wrote the expected stuff, like  “get a degree” and “learn to surf” and “go on a camping holiday” but I also wrote “Feel good about being me” and “Make a difference to someone in a +ve way” and “Feel part of a family”

Anyway, I apologise for boring you with such slushy ramblings, but today I was blown away by the amazingness of human kindness. But yeah. Good times. Really good times. I’ve still been unable to start my walking milestone for this month because my body is (somehow miraculously over its acidosis when it really shouldn’t have even got through it without hospital intervention but) still wiped out and rather unwell because my blood is all out of whack (in account of the fact that I usually end up having a bunch of other IVs to put all my other levels back to… safe… and that didn’t happen this time because I couldn’t face hospitals).

One person today offered me pity. They seem to think my situation right now sucks. It doesn’t. Right now, in this moment, there is so much good to be found on the faces of the mountains I am still trying to climb. I am empty, I am fragile, I am downtrodden and struggling to cope at all. I am lost and I am trying so hard to find… anything. But there is today a stunned disbelief, a whisper of reassurance. So much is not ok. But something is. And I plan to focus on the “something” rather than the “so much”. Force positive thoughts until my brain accepts them and starts generating them spontaneously, is my latest logic.

Anyway, no way but through.

So, I’ve Had An Idea…

Running is my motivation for living right now. I’m not exaggerating when I say this; the thought of being able to go for a run is what has me holding on, even though I’ve yet to even attempt such levels of activity. When I was told, after a bit of a pause and with a lot of caution, that I could attempt to get back to some level of activity again, I went from a desperate, suicidal mess, to this driven person with an aim and a focus. It won’t make the hell that I am about to endure bearable, but it will be there waiting for me on the other side.

I still can’t talk about what I’m about to face in regard to my health because my brain implodes at the thought of such unpleasantness, but running even the shortest distance will help me deal with the emotions and thoughts that are swirling around in my head at the moment (I am no longer numb, I’m looking forward to running and feeling almost ok but fragile, and then suddenly that all slips in a seismic shift, and my world crumbles, and I feel like I’ve been winded, and it takes everything I have not to cry because I remember what is coming, what is waiting for me, and I don’t know how to do it. I don’t know how to face it. It makes me stop whatever I’m doing and just cease to… Human. Dread consumes me, and then a brief panic, and then numbness returns until I am once again lost in thoughts of running. I’m very fragile, and on the edge, but I am moving away from where I was and I’m trying so, so hard).

Anyway, running is my motivation for living right now, but I want there to be a motivation for running. Running for myself is selfish, I feel. I have been given this chance and this amazing opportunity to attempt activity, and I don’t feel I deserve it. This is undoubtedly because my self esteem is at an all time low after the return of my family, but also because I just feel that so many more people deserve the opportunity to find a part of themselves again, as running is going to allow me to do. I am rather pathetic, and a bit of a drain on society, and there are fantastic people out there who are never going to get chances so… Why has one been wasted on me? I’d pass it on if I could. And then I realised I could do exactly that, I can pass it on

I want to set myself a running goal each month, and each month ask people to sponsor me to reach that goal in order to raise money for a different charity. Even if I only raise £1 for each different charity throughout each different month, I will have done something.

Running is going to significantly improve my life (although ironically at the same time it is going to make my heart have tantrums and make me feel like rubbish, but I am totally prepared for that and the emotional benefit outweighs it all) and I think it is only fair that I pass that benefit on to others by raising money to fund research or facilities or treatments or awareness or whatever else can help people who are in (or hopefully, some day prevent others from ending up in) the situations I have faced… Or just for causes and charities that are on the list of those I decided I wanted to raise funds for when I was much younger (actually, there is a book full of charities and lists of what I wanted to do to raise funds for each of them. When I was wrote them, these physical challenges were achievable, but now they really, really aren’t).

At the age of 14, I decided that during my lifetime I wanted to raise as much money for as many different charities as possible, anonymously, and in my own free time. That year I completed my own individual triathlon, participated in a 5k sponsored event, and filled an entire notebook with other things I wanted to do as the years passed… But I was never able to do anything from that notebook, I wasn’t well enough. My health began to hiccup spectacularly, significantly endangering my life (almost killing me many times) and forcing me to acknowledge the severity/ reality of what for me had just been a normal part of my life for as long as I could remember. Yesterday I was given back what that took from me – the hope of running again. And I have 6 years to make up.

There is not just one health hiccup that has for all this time stopped me running. Even if my heart is happy, my body will have extremely low levels of energy – it cannot metabolise glucose much at all and so essentially runs on empty, breaking down what little fat I have remaining (and muscle) for fuel. Energy levels that are normal for me are low enough to keep a healthy person in bed for days, but to me they feel amazing. Which is my point.

This is all relative.

My deciding I want to run a 5k is like a healthy person deciding they’re going to run an ultra marathon off of no training. I was told I am not even anywhere near well/ fit enough to start a “couch potato to 5k” running programme. It is going to take me months to work up to the level of couch potato. At the moment, walking half a mile wipes me out for the rest of the day. Many different parts of my body are going to hate me. This is going to be difficult. Beyond difficult. Keep in mind that in May, due to a combination of health hiccups, I was unable to walk and barely had the energy to stand. What may seem like a feeble physical challenge to some is a near impossible feat for me. My dog and I walked about 3/4 of a mile this morning, and I’ve been laid out on my bed ever since… That’s how tough activity is on me. But I plan to be tougher… Eventually. For now, I’m stuck at what to everyone else appears as pathetically feeble, but to me it is a huge, huge, huge level of strength and physical ability.

This is why I’m not actually sure anyone would sponsor me. When… Or even if, I do decide to start this, I will have no choice but to start with walking (which is hugely disappointing for me, and feels ridiculously easy even though it will be stupidly tough). Maybe aim for a 10-15kkm total for a month, and introduce a very small amount of running near the end (we’re talking a light, 200m jog a day, even though I’m not even supposed to attempt jogging yet and that is far too long a distance to start with – yes, my body is that weak and incapable right now, I’ve been told I’m basically at the stage of a baby, and have to walk much further before I even think about thinking about the slowest, teeniest, tiniest jog). People are hardly going to want to sponsor me to do that, but then again, I don’t think people have any idea how tough (or how much of an achievement) that will be.

Running at all is a big deal for me – it is something I thought I would never do again, and my consultants for various health hiccups just accepted that as a given too, not really caring too much about whether or not I could run, and figuring that the most important thing was that I have a pulse. That is important, but like I’ve said, one consultant is about to implement a treatment plan that will at least temporarily leave me with a life that isn’t worth living, as a last resort, with a change that it might not have any effect on that particular health hiccup. A few weeks ago I was told I have a very low quality of life, that I couldn’t do anything that a normal 20 year old did… And back then, I couldn’t. But if I can run, I can do anything. If I can run, this is a great big flashing representation of that quality of life that they told me they wished I could have but didn’t know how to achieve. It will be me proving them all wrong again.

If this plan ever happens, I’m thinking that I’d start a second blog (and maybe a social media page) where I’ll post updates of my walking/ running progress, and screenshots of runs (you know, of maps or whatever from one of those apps that tracks your run or walk), so that anyone who sponsored me could be sure that I was actually achieving what they were sponsoring me to complete. I kind of also considered using it as a platform to inspire others to run, maybe getting them to set themselves a monthly running or walking total or something, and maybe getting a few t-shirts with something motivational printed up (I know I still need to sort out my actual t-shirt business because I took down the website after it included my home address in one of the links from the page, but hey, I can’t even think about dealing with that stuff right now and it will wait).

So erm… yeah.

Thoughts, anyone? (Seriously thoughts are beyond welcome and would be greatly appreciated, so please comment away!)