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.

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“An Act Of Kindness”

I’m kind of embarrassed to say that things lately have been becoming increasingly… tough (I hate the ‘t’ word, because I’m not sure I’m justified in using it to describe my circumstances EVER). It feels as though I’ve been watching every element of my life slip away around me, with not enough hands or enough strength to catch the parts worth saving. I’m always very aware that I’m lucky (incredibly so) that my life isn’t awful. There is a huge capacity for it to have been much, much worse. I always use that attitude to drag myself up out of the places my mind gets stuck, tell myself I’m an ungrateful idiot, and move on. But things pile up. Normal 21 year old things, the impending doom of exams that I’m far too unwell to prepare for (and may not even be able to sit, as they are only next week), a crime committed against me in my own home, the huge emotional mess that existed before and after that, family disasters, and all the health stuff etc. etc. Not the end of the world, and maybe manageable one at a time if I wasn’t so mentally exhausted. But I kept going at the thought of heart surgery, at the thought that it might fix everything and I’d wake up an entirely new person.

For most of yesterday my heart rate refused to dip below 150. With all the marathon headlines floating about, Skippy (my heart) seemed to think we were running a marathon. I slept most of the day, not by choice, but because I couldn’t fight it. I couldn’t catch my breath. Eating was a strenuous exercise. So strenuous in fact that I almost passed out in my dinner. I was a dizzy heap of pathetic incapability that infuriated me. Skippy just said no. He hurt in extraordinary ways. My left arm went dead. I could barely function. Surgery was not meant to do that to Skippy. It was meant to appease him and every aching moment of his freak-out was an anchor pulling me back to the reality that things hadn’t worked. In fact, things were significantly worse. And that… That was a bitter pill to swallow. It made all of me sink.

Then I got a message. From Portsmouth Uni Friend. She told me she had a surprise, and sent me a link. To this. A small charity gig, featuring none other than Bastille. In Islington (an area that just reminds me of the hospital Skippy and I used to go to near there). On the 22nd of May. She knew how much the music of Bastille has meant to me through some pretty tough times, what it stood for, what it got me through. And she said, “shall we go?” And then another friend messaged, saying she knew how much that music meant, and she’d even buy my ticket. With the track record of things that seemed too good to be true turning out to be… hopeless hoping, I didn’t think anything would come of it.

So I went to bed. I was up all night, and I was scared. I stayed up until 3am, with Skippy racing the entire time, feeling almost as tired as I was in the end. For some reason, if I sat up and turned the light on, I was sure it would stop him from stopping. It was irrational for me to think I might never wake up, but after surgery Skippy is a beast I no longer know. He’s different now. Alarmingly so. I drifted off. Palpitations woke me from sleep. Chest pain stopped me drifting back off. Over and over again. I’d sit bolt upright and just hold my chest and oddly enough… Talk to the freaking out ball of muscle beneath my sternum. Skippy didn’t listen. It didn’t stop me telling it ssshhhhhh, it’s alright, over and over again. I was too wired to sleep. So I put in my headphones, and listened to Bastille’s Pompeii on repeat, because from the first time I ever heard that song, it has never failed to calm me down. I haven’t had a night like that in a very, very long time. It was draining. I was scared by it, stunned. I hadn’t expected it. I woke up almost afraid to stand.

With my heart in such a state, I naturally began thinking about the consequences. My exams start next week, and I would be in no state to sit them in my current situation. Then what happens to my third year of uni. Come to think of it, with a heart like that, how would I ever get a job? I wouldn’t be able to go for a walk, and I’d certainly never run again like I dream of being able to do. And my thoughts frantically raced around my brain trying to find something that might be unaffected, and there was nothing. Skippy has a hold of everything, and when he rebels, I lose it all. So I was searching for something to wake up for, to carry on for, to motivate myself with… And I just watched everything slipping away. Stupidly,  I couldn’t find anything left. I was so tired. With all my health issues. But mostly with the idiot inside of my chest. Skippy in his current condition isn’t going to kill me, he’s just “limiting your life” in the words of my cardiologist (which tells me that there isn’t really any reason to be significantly bothered because hey, the thing could be about to kill me and it isn’t). But still. I ground to a halt.

And then this morning, at 10am, with Skippy still shaky and determined to misbehave and me trying and failing to focus on revision through his aches and grumbles, I got a message. Two tickets to see Bastille at a pretty small gig. Me and Portsmouth Uni Friend. HK Uni Friend adamant that I would not pay a penny for my ticket. I was, and still am, astounded by their kindness. Completely. Astounded. In fact, it all seems a little surreal. They simply said I needed a reason to be happy. They said I deserved it. They said my life was unfair. I don’t deserve such awesomeness, and there’s nothing unfair about my life at all; in fact, I’d rather me go through all of this if it means that somebody I know or care about doesn’t have to go through it in my place, and I am frequently thankful for that fact because I think that’s… Fair.

And now there’s something to look forward to, something Skippy can’t take away, because even if I have to crawl, I’m going. My friend pretty amazingly said that even if we go and I end up unconscious (as I did on my birthday when we went out), it will be entirely worth it. And that’s pretty much my view. Skippy is wrecking a lot of things at the moment, and right in the middle of the void that has created, there’s now something to aim for and look forward to and… Be on the planet to witness. A calm, right in the middle of the storm.

And that’s all I needed. Something to look forward to. Because nothing seems bad anymore. I have perspective again. I’m sat here with Skippy still being an idiot, waiting for an arrhythmia nurse to call and… I’m lost in this awesome little bubble of happiness where fear cannot find me. I have something that makes me feel 21 again instead of 80, and I kind of live for moments like this. Where normal 21 year old things happen. I just suddenly have this overwhelming feeling that things will be ok.

It all works out in the end, I guess.

You don’t appreciate solid ground until you’ve been lost at sea.

(Also, yes the title of this post is also that of a Bastille song. Very fitting today. My friends are… well, I don’t deserve them at all, but they mean the world to me).

I Did (Another) Thing!

I have gone and done a thing again. I wrote another post for The Mighty about why I find it difficult to open up about my chronic health issues. I’d been meaning to put my writing out into the world again for quite a while, and half past one this morning seemed like the perfect time to stir my thoughts up until words flowed from my fingertips. I was a bit of an idiot and (regretfully) forgot to link my blog to the piece of writing I did, so I won’t see any increased blog traffic from this; but I guess I do this more for the experience (plus the minuscule boost in my self esteem when people react positively to something I produced) and to allow my thoughts to reach a wider audience. I’m not really sure what substance there is to what I wrote, but my mind decided it was worth writing about and the editing team decided it was worth publishing so hopefully it isn’t the utter trash that I now fear it may have been (most things seem like a great idea when considered at 1am).

It was sparked by the difficulties I have encountered recently in trying to open up to people about my health issues and inform them, and the past experiences and though processes which limit my confidence in talking about these issues. I thought it might be something others could relate to, so I took another leap of faith with my writing and just went for it.

My health is increasingly becoming something that there is a need for me to talk about, and I really don’t want to at the minute. People’s reactions aren’t too helpful lately, and my confidence about many areas of myself are at a rather impressive low. I’m terrified about bringing them up with any members of university staff, but am starting to develop a high level of anxiety about how the uni will react if I become unwell. I tried to deal with that by arranging to meet with my disability advisor next week, so I hope that calms my nerves a little.

I’ve spent most of the last two days asleep. I didn’t get out of bed until past 16:30 yesterday, and I spent most of that time asleep. This is usually my body’s lousy attempt at a warning sign before it plunges me into the sort of situations that I don’t like to end up in, but I am carrying on as normal because… I love the normality that I currently have. I don’t want to miss any university and I don’t want to spend any time away from people, especially not being shut in a hospital tethered to IVs.

Today I had no lectures, but I did have a three hour lab in which we were divided into groups of five and had to connect one of our group to a twelve lead ECG (which actually has ten leads but hey). It was weird for me to see so many people hooked up to machines and the novelty they all felt towards the experience. To me, it took a little but of getting used to. It reminded me of being in the back of ambulances or laying in resus or… Just hospital appointments. After my brain stopped replaying these memories on loop, I settled in to conversation with HK Uni Friend and WR Rugby friend, sat down, and held my head in an attempt to stop the spinning that seemed to originate there. I didn’t feel well. I tried to vaguely say this, and the other people in my group (who don’t understand that when I say unwell, I mean I’m about to hit the floor) were outraged at the idea that I was going to be a pathetic wimp and leave when I didn’t even look that unwell. I couldn’t be bothered to argue, to tell them that I was very clearly in the early stages of acidosis and my heart rate was almost too fast to count, so I stayed instead of going home to grab the injection that my body was crying out for. WR Uni Friend came back to mine afterwards and didn’t freak out when I injected in front of her (which is rare because people usually F R E A K!). She left her coursework at mine so it wouldn’t get spoiled and we headed to the pub for some dinner. We sat and talked for about two hours, and she told me to go and see uni dad, at least just to let him know I’m alive and ok. She suggested that I go to the hospital, and said if I ever change my mind she’ll go with me. I don’t think she realises how awesome the last part was.

I felt considerably better about everything as the injection kicked in and we talked away, and even had an idea for a much bigger writing project which may or may not come into existence, because I always have the best intentions and the boldest plans and it is very rare that anything ever grows from them. It was so nice to just chill with another human though – living alone is super lonely and I often crave human company.

I messaged my next door neighbour about the puppy sitting I agreed to do for them next Saturday, and we ended up messaging away for a while. She said that she was looking forward to seeing me and I felt ALL the feels. I also felt all the feels in the early hours of this morning, when I found a picture I’d taken of the photo of me and my uncle which sits on my bedside table back in Kent, and posted it on social media telling my steely but surprisingly soppy uncle that I loved him more than I’d probably ever admitted and was both proud and lucky to call him my uncle (today is his 50th birthday and he lives in Hong Kong so I haven’t seen him for a year, which meant that being soppy was entirely necessary. I am feeling the importance of family at the moment, and trying to find one in which I feel I belong).

So today has been pretty awesome. Almost as awesome as my recent discovery that there is a place right by the tube station that serves an entire pizza for £1.50 (I went there two nights running, it’s such good pizza!). We’ll ignore the fact that I ended up in the start of a medical emergency, and we’ll also ignore all the things I refuse to acknowledge about my health right now. Instead, I’ll look forward to tomorrow’s lectures, and continue to dread the weekend (because there are no lectures at the weekend, and I love uni a little bit too much to know it is shut for two days).

Anyway, if you’re interested in checking out the (potentially awful but hopefully possibly not) article/ post that I wrote for The Mighty, you can do so here. Writing somewhere so public is a huge deal for me even though it really shouldn’t be because I can hide behind a screen. My writing has been really off lately, so don’t hold out much hope if you do read it, but thanks for reading (at least this blog post) this far if you did.

Sometimes good stuff comes from/during difficult times, and today reminded me of that. I still know I’m going to end up in hospital in the near future. I still don’t know how to face that reality… And so I’m still not.

I also still know that there’s no way but through.

Happy Thursday!

Carrying On

A really weird thing has happened to me in the last couple of days – I’ve started thinking forward, planning. Not just the next day (I kind of live in the moment and go with whatever) but the proper future, like what may be beyond this degree. This is a huge deal for me because for a long time I was so uncertain that such a future would be there, or that I’d make it to the other side of this degree, that I saw no point in planning, and that even thinking that far forward would become disheartening and remind me that living with my health is like playing Russian roulette – each time things go wrong could be the last.

Firstly, I stopped living in fear. I let go. And then I came to uni, and it injected some ambition back into my life.

Yesterday I woke up, took my bins out, and arrived at my comparative physiology lecture 20 minutes early. In the lecture, I felt like I was going to pass out. I had a thumping headache and my vision was going. 9am was too early. The rest of our lectures are 10am, and I’ve found them so much easier to wake up for (today and on Monday). I wasn’t as exhausted as I always was last year (when all my lectures started at 9) and I’ve decided that extra hour in bed makes all the difference!

I sat there listening to the lecturer talk about his research and all the places it had taken him, and it made me think a lot. The lecturers that stand before us and take a couple of hours of their time to share the knowledge that they’ve gained are published scientists. They’ve worked in many places, contributed to incredible research and discovered awesome things. The places they’ve been and the things they have done with their lives are incredible and so interesting. I found myself drawn to the idea of research for the first time since I started this degree. I’ve always liked the idea of lecturing, but suddenly getting a PhD and working in  research lab was such an appealing idea to me. I wanted to do medicine. That was the dream – to help people, and then once qualified highly enough, volunteer for a charity and provide medical care and surgery in places where people couldn’t afford it. I sat there and thought it all through and realised that with my health, especially in its current state, that isn’t a realistic aim. I needed to scale down the dream and plant my feet firmly back in reality. So it hit me in the middle of that lecture, that I could think of nothing better than working all day on something that genuinely interested me, and then talking about it to a room full of university students and sparking some interest in them too as my lecturers have done in my own mind. I feel like that is also a way of passing on some good and spreading something positive in the world.

I went home, cooked myself a tiny amount of gluten free pasta (which was also free from egg, milk, and something else, so I wondered how on earth it was still pasta). I listened to a recording of yesterday’s lecture once again s that I wasn’t wasting time not learning. I did this in first year – I started the year doing far too much work. I was studying for 11 hours a day, but not out of pressure, because something in a lecture would grab my interest and I’d type it into a search engine and end up in a rabbit hole of curiosity that would lead me into hours of reading research papers and online textbooks until all my questions had been answered. As a result, my notes went into FAR too much detail and were useless for revision purposes as there was more extra work than actual lecture content, and after a few weeks I became unwell and eventually ended up just attending two hours of lectures a day and sleeping the rest of the day away because I could do no more.

I went to my physiology lecture. This year our physiology module focusses on cardiac and respiratory physiology. I already knew the lecture content in more detail than we covered it, because I have a huge interest in cardiology and the workings of the heart, and after discussions with cardiologists that cared for me sparked interest, I would ask to borrow their text books while I was in the CCU or end up on the internet reading around the subject again (oh wow I’m such a nerd). A lot of the stuff I knew because my own heart had led to me hearing terms and stuff before. My friends found it funny. They just kept looking at me and whispering “OK so I’m revising this with you because you can just teach me it all.”

I went home and read through a general biomedical science textbook, reading about the content of all the lectures we’d had so far but from a different source. I then made revision notes, before realising how unwell I felt again. I curled up around my laptop and guiltily put on a YouTube video, before falling asleep. I napped on and off for two hours, and woke up feeling like I hadn’t slept for a million years.

I also woke up to the AWESOME news that Student Finance England are FINALLY going to pay my student loan and that the money would be in my account within three working days. This is because I was finally able to enrol on the university system, due to receiving my corrected exam results the other day.

I found a map of where our lecture in the dental hospital was due to be the next morning, and sent it to everyone I knew as I knew people were as clueless as I had been about where to go. I have never received so many messages from people saying they love me. It was pretty funny.

HK friend invited me to the pub later that night to meet her other friend from Hong Kong who also happens to go to our university. I was bummed out because I’d missed a phone call from my godfather and I love our long old chats, and I was once again in the start of acidosis and losing the ability to remain conscious, but I dealt with it yet again and and three hours later I left to meet her. I’m so glad I went.

There were nine people, and the only one of them I knew was HK Uni Friend. Her other HK friend was so lovely! They were all so easy to talk to and such an attractive bunch of people! I was worried they wouldn’t accept me, and I’m usually really shy, but I put myself out there and chatted and really gelled with one girl in particular (who I will now call Fresher Friend). I had such a great time, and was introduced to them by HK Uni Friend as some sort of miracle, who was extremely tough (and then NO. She’s TOUGH) which I guess is a compliment? (even if it couldn’t be further from the truth!). I had such a great, great time. It was all so relaxed, and they gave me a voucher to get a really cheap gourmet burger which came on a huge plate with chips and onion rings. My old flatmate was working behind the bar but I got talking to this guy who was middle aged. He asked me where my parents were from as I’m mixed race and he noticed my afro-carribean half. I spoke about my dad, and he asked me about him and if I’d ever been out to meet my extended family. I said I didn’t know my dad, and he was estranged from two daughters who were close to my age. He kept telling me to get in contact with my dad and decide what he was like for myself, but he wasn’t stroppy about it, just said it from the dad point of view. He was friendly and we talked for quite a while… Until I went to join the others again. There was this really pretty fresher there (Fresher Friend) and she was so lovely. She started telling me her entire life story and then apologised but said I was just so easy to talk to (I get that a lot, and I never understand why people are sorry for letting out what they need to let out). Everyone was smoking fancy french cigarettes (apparently that particular brand are referred to as bitch sticks) and passing around drinks and wine. They were such a cool group of people, well dressed and so above the sort of people I ever thought I could mix with.

They invited us out with them on Saturday night. Fresher Friend asked me to go, and she also asked if we could meet up between lectures for coffee and stuff sometime. She lives in the hall block that I lived in last year, although right at the other end, but she looks out the same way onto train tracks and has the same view I did. We got along so well and I was really surprised. It was the kind of stuff I missed out on last year – meeting new non-biomed people, mixing, going out at weekends… I can’t believe it happened to me, it feels so surreal. It’s me. It was such a great night and it was so chill and I was there… And people like me… Me! What… Even.

I came home passing out. I probably should go to hospital at some point but I can’t. I considered getting help and thought through it all, in my mind walking to the hospital and letting them start treatment to save me. But even in my imagination I freaked out to the point that the imagined scenario fell apart around me, tumbling down as panic overrode it all. I literally can’t. I see doctors in my mind, I see my health teams finding out I’m here and deciding that instead of calling me and being ignored they will appear in person… And I can’t go there. I don’t want to face them because I don’t want to face up to my health. I am comfortably in denial and somehow I am dancing along in this state and it feels bad and I can’t cope or carry on like this but I’m at uni and I will not let that go. I’m terrified of missing out on uni because I am loving it, and I’m even more scared about how the staff will react. I can’t live like this.

I don’t want this blog to mention my health unless it becomes a huge issue/ nearly kills me. I don’t like that I mention it so much, but it is a huge part of my life and this is the only place I have to let it out. I don’t want pity or sympathy (in fact I actively don’t want those things), I just want to let it out and perhaps help people word their own feelings or find people who understand mine in the process. I guess I also want healthy people to see what goes on behind the scenes of chronic and serious illness.

Normal life may be a bit boring, but I feel that my life is becoming increasingly normal and I’d like to just focus on normality a little bit, instead of shaping my health problems into my identity in shape of my personality, which I don’t want to do. I don’t need this blog as a coping mechanism right now as I have done, because things feel pretty amazing. I’m feeling much better about my 2:1, after I told my result to the uni parent who I hadn’t spoken to for months (who was certain I would get a first even when I was in hospital at the start of the year, and seemed to think I was definitely going to achieve one). I expected disappointment. I expected a shrug of the shoulders. I got a congratulations. In fact, I got “Great news! Well done! Delighted for you.” And then it was easier for me to sit with my grade, because I stopped feeling like I’d let everybody down. Somebody who had expected so much from me was happy that I got a 2:1, they didn’t voice their disappointment, and in doing so they almost silenced mine. I’m in a better place emotionally thanks to university than I have been in a long time (ok university also destroyed my emotional state at times last year but hey). And I actually made new friends, who were so nice and easy to talk to that I didn’t feel like my usual awkward self around them.

I don’t even know what I’m trying to say. I’m dealing with physical stuff and emotional stuff, and I don’t want to deal with any of it at all. Not any more. Not in a sense of letting it do its own thing and take my life down with it, but because I don’t want it to be a thing. I don’t know what healthy / not chronically ill feels like, but I’d really like to experience it for a day. I think it would feel weird. I think it would feel like freedom. I think it would feel amazing. I don’t want the responsibility of controlling my body with injections and tablets to keep myself alive and then to fail and almost die anyway. I feel responsible and like a failure when my health deteriorates because it is my body and I try to manage it and it is the one thing I’m meant to be able to control. Always. Even if everything else falls apart, your body is yours. Except I feel like someone else owns mine – all the doctors that rule it, the health that destroys it, and the demons that move into the cracks that appear under the pressure of these unwelcome visitors. The week I’ve had so far is what I missed in first year. I’ve met so many people, fitted in with three different groups of friends and spoken to people I haven’t spoken to before. I’ve felt less lonely, I’ve been socialising and laughing and smiling. I don’t want to lose that again. I don’t want to lose this situation. I don’t want my health to rob me of a single element of this and I know it will but I don’t want it to. I am beyond determined to just ignore it because in my mind that is the only way to fix the problem and make it all go away. I know I’m so lucky, and I am incredibly grateful for my situation; I don’t mean to sound spoiled or pathetic, I’m just incredibly and helplessly frustrated and so, so desperate not to let my health do its thing any more.

But I am kind of living by this attitude right now. So I guess to share that philosophy I’ll go back to the way I used to end my posts when I started this blog.

Step (I’ve lost count) to getting out of a rut in life:

There are two things you do when life goes wrong: You get up, and you carry on. (My brain occasionally has productive thoughts – and this one even accidentally RHYMES!)

No way but through.

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 Alive

I have a whole new level of respect for 13 year old me. Yes she had hiccuping health, and was blissfully unaware that she was going to end up hospitalised for months and months at a time, but I’m pretty amazed at what she was capable of in terms of physical activity. I’m impressed because today 20 year old me got into a 25m pool for the first time in years, to attempt to swim. And she struggled, and she hurt in ways swimming had never hurt before, and she was pathetic, but hey, I SWAM. FINALLY, I SWAM AGAIN.

Processed with MOLDIV

Processed with MOLDIV
SUCH A BORING PICTURE BUT IT MEANS SO MUCH TO ME! Swimming bag, goggles, and Bob Jr. who was not supposed to be in the photo, but from whom I had just disconnected myself in order to be able to swim, and so here he is.

 

I am on top of the world. 

Feeling like a hero, but I can’t fly
No, you never crash if you don’t try
Took it to the edge, now I know why
Never gonna live if you’re too scared to die” –
Goo Goo Dolls, So Alive

Swimming was always something that was so effortless to me. But I gave it up. I had to. Eventually I couldn’t breathe while I was swimming and would feel like I was drowning without having inhaled any water… And so as I grew older, I never got the opportunity to push myself until I couldn’t lift my arm, until my whole body was searing and screaming at an effort it wasn’t used to… And prior to that, when I was 12-13, my body was used to the effort. I ran, I swam, I sailed, I mountain biked for miles, I played on our trampoline… I was that person who could get into a pool and swim laps for hours without stopping and still be faster than the adults. It didn’t hurt, I was out of breath but not uncomfortably. And I never realised how impressive it was that a body could do that. I never realised how much effort it took to swim. Until today.

I didn’t think I’d manage a length, given the fact that walking 1/4 of a mile makes my heart freak out so much I almost pass out and then have to sleep for hours (but hey I CAN  WALK 1/4 OF A MILE AGAIN NOW WHICH MEANS GOODBY WINSTON WHEELCHAIR CAN WE ALL JUST PAUSE TO ACKNOWLEDGE HOW GREAT IT IS THAT I CAN WALK MY DOG AGAIN?! Who cares if it’s short lived, I’m living now, today, not in the future… And right now, I can walk a little way even if I pay a huge price). I told myself I would do gentle swimming. My brother and nephew were messing around in the rapids and on the slides, and were nowhere near the fitness pool. I was alone, just me and the lane ropes and one other person in the fastest lane (yeah, you knew I wasn’t going to do gentle swimming, come on, it’s me. That intention did not go to plan).

I had underestimated how great it feels to swim. I kicked off of the wall and the water rushed past me and I was instantly home, suddenly back before my health dragged me under (pun intended). I started with freestyle at a pace that I thought was gentle and slow. I had to stop after one length. Skippy (my heart) was in shock at the sudden expectation of him. I’d taken it easy in comparison to what I’d been able to do when I was 12, but I was so out of breath you’ve thought I’d just sprinted 200m at race pace. I switched to breast stroke, did another length, and had to stop for another two minutes before I was in a fit state to swim again. But I was lost in the moment. It was difficult for me to accept that my best was so far below my 12 year old self’s average. My brain still expected the same level of performance and struggled to accept that I was no longer capable of that. But I wanted to get as close as I could. I has surpassed my own expectations and managed to swim a length, and I was kind of curious as to how far my body would go. And so I pushed it. My “easy” breaststroke was faster than the other person’s front crawl (when I say easy, I mean it would have been for 12 year old me, but killed the 20 year old version).

I ended up pushing myself until I was doing one length in 20 seconds. This is an appalling pace, and it was almost cringeworthy for me. I was back in the mode of a training session, where we used to swim back to back lengths and do 1,500 metres just in the warm up. It took me 2.5 hours to do 52 lengths. I spent so long sat at the end of the pool. About 20 lengths in I should have stopped. My muscles were searing. As I got to the deep end, I felt a pop in one of my hamstring tendons, and a ridiculously loud cracking sound travelled through the water. It hurt a stupid amount. Years of swimming and I never hurt my knees or my legs. To top it all off, it was my right leg, which already has a pulled/ ever so slightly torn hamstring much higher up, and a very grumpy patellar tendon. I stopped kicking and swam to the end of the pool, where I stopped to assess the damage. “Ah, was that cracking noise your hamstring?” The man who I’d been swimming behind paused on his next lap and nodded towards the leg I was holding. “I’d know that sound anywhere trust me, something’s torn.” He said in response to my confused look. It didn’t hurt so much when I stopped swimming, so I kicked off to swim again, came to do breast stroke kick and… The most ridiculous pain, and the weird popping sensation again (only much milder this time).

My arms and shoulders, even my wrists were sore and aching to the point where I could barely lift my arm out of the water when I switched to freestyle to try to finish that lap of the pool. But pain wasn’t going to stop me. I had no intention of stopping swimming until I was physically unable to do so and in my mind the only muscle that would bring that about was my heart. And I wasn’t even listening to Skippy. My heart rate after one length was well over 200. It was so fast that I counted 112 beats in 25 seconds and then lost count. There was an aching in my chest, but the pain of my newly messed up tendon thankfully shut up the crushing ache spreading out to my shoulder, and so I pushed on.

I stopped for a long time between laps. This gave me time to watch the swimming lessons taking place in the end lane. And that was what nearly broke my heart because I saw the sweetest thing. There was one swimming teacher in his late twenties (happened to be very attractive) who was just amazing. There was a little boy in a wheelchair. He can have been now more than six or seven years old, and he didn’t have enough muscle tone to support himself. The swimming teacher took his top off, walked over to the little boy in his wheelchair, and picked him up as if her were his own child. They both broke into giant grins, and this little boy just hung limp and like a rag doll, so light the swimming teacher could carry him with one arm. The swimming teacher climbed into the pool and let the little boy float on his back and started dragging him around in the water and helping him do flips and just playing around in the water while his mum watched. The little boy laughed and cried out, and the swim teacher kept having to take him over to the side of the pool and lay him on his stomach and rub his back while he choked, but he even did that so affectionately I was blown away. He put the little boy on his hands and knees, and the boy’s legs shook uncontrollably and couldn’t hold his weight, but he threw himself into the water towards the swimming teacher, who took hold of him and lifted him above his head smiling. It was so lovely to watch the two of them together, to see what this swimming teacher had done for a boy who on land was stuck in a chair. And it also made me think well if he can swim, I’m going to swim. 

I told myself I’d stop at 30 laps. Then 40 (by which point I could hardly move, and had gone a little blue because Skippy was freaking out, but he was only skipping the occasional few beats so I decided he would just deal with it). Then 50. Then 100. I gritted my teeth through the pain (and believe me, by this stage there was a lot of it). My tendon kept having the occasional twinge, so I mostly swam with my right leg training behind me. On my 52nd lap, I started to swim breast stroke, kicking with just one leg. Halfway through the length, I decided to kick with my right leg too, because it hurt to keep instinctively trying to do breast stroke kick with a straight leg. This was a mistake. Another crack shot through the water like a gunshot and that time I knew it wasn’t good. I stopped at the end of the pool, my fingertips blue and feet blue, my lips tingling, my heart beating too fast to count… And it was all so worth it. I stayed there for ten minutes before my heart could deal with me standing up on dry land. I hobbled to find my brother and nephew, my semitendinosus tendon screaming at me whenever I moved my leg in a certain way. My body hated me. For two and a half hours at me it had been screaming at me NOPE, and I had spent just as long screaming back SHUT UP YOU’VE HELD ME BACK FOR TOO LONG. JUST LET ME HAVE THIS ONE SWIM. 

“My body tells me no, but I won’t quit, cause I want more” – Young The Giant, My Body (this song was my anthem all the way through sixth form when I took risk after risk and achieved things nobody ever thought I would, like making it to my exams, and getting into uni…)

I don’t know how I used to swim so far so effortlessly. I don’t know how I used to swim 5km without stopping, or just get in a pool and swim 300 lengths while my family messed about diving to pick things up off the bottom of the pool. I hurt. I ached all over afterwards – my abs, my thighs, my wrists, my shins… There wasn’t a single bit of me that didn’t ache. The breathlessness never left, although to be honest that was there when I woke up this morning. And to be even more honest, by the time I went to bed last night my mother (who is a midwife) had told me I looked 7 months pregnant (the joys of ascites) and my ankles and shins were really puffy. Either my kidneys were being stupid and retaining water, or my heart was being stupid and not moving my blood (which may have annoyed my kidneys in turn actually). It still didn’t stop me today.

I forgot what swimming is like. I literally think of nothing while I swim. Nothing. It completely cleared my mind, and that was heaven, to have no worries, no stresses, no judgement, nobody talking to me or looking at me (other than the lifeguard, who was extremely concerned at the way I looked). It’s my own little bubble. I’d forgotten how amazing it felt, I just knew it would be amazing. I can see why I used to love it so much (I used to dread training sessions in the end because my heart couldn’t deal with them, but until that stage it was HEAVEN). I can see why my mind has been fixated on the idea of getting back in a pool and swimming again. And it’s all out of my system now. So much frustration and the emotional pressure building inside of me has been released. Because that’s what swimming does. It sets me free. It makes things bearable. It wrecks my body in the process, but that was a sacrifice I had to make today, and I’m glad I did. I don’t think I will be going to swim in the olympic pool every day before lectures, maybe only once a week, I don’t know.

My tendon is currently throbbing (mostly on the inside of my knee and where it inserts into my tibia (shin bone))and my leg is swollen over the top of it; the breathlessness hasn’t left me, I have a wheeze, water keeps catching in my throat as I exhale and crackling as I inhale, and I feel like I’m breathing soup; the ache in my chest will not leave and my heart is still beating at an alarming rate even for it, (my resting hr when sleeping is 100, laying is 110-130, standing is… Higher) and after several hours of 180bpm while slumped on a sofa, I feel completely rubbish and my hands and feet are pale and tingly, and my stomach, which had returned to its normal flat self, is now so distended I look like I’m pregnant with triplets (Seriously, kudos to my former self for being able to run 5km, then do about 5 times the distance I swam in less time than I was in the pool!). I’m a little bit wrecked, basically.

But I’d do it again right now. Because my heart did so much better than I thought it would, and mentally I feel so much better for that swim. Swings and roundabouts, right? I’ve never been so happy to be feel a little pants. I’ve felt so, so much worse and to me this is nothing, this is worth it, this is liveable and I can deal with it. This wasn’t worth it, it was more than worth it.

I was lost, I was in such a bad place, and now, on the day the Olympic Games start, I got back to sport, and sport saved my soul all over again.

And yes, I feel on top of the world, because I overcame something I never thought I would overcome to achieve a dream I thought would never be achieved. I overcame myself. I overcame my health. I took a huge, huge risk and I was an idiot, but it more than paid off.

I feel a little invincible, and also totally not and completely humbled by my incapability all at the same time. But I am happy in a way I had forgotten how to be. I am not a waste of space. All is not lost. I am someone. I am good for something. All those gallons of water were powerless against the fire of determination inside of me. And it has completely changed my outlook on myself and of life.

“Time to raise a flag for the cease fire
Staring down the hole inside me
Looking in the mirror, making peace with the enemy” – 
Goo Goo Dolls, So Alive

Never underestimate the power of a pool.

No way but blue.

Processed with MOLDIV
It’s been so long since I’ve seen a sight like this! Hopefully not too long again!

“Feeling like a hero, but I can’t fly
No, you never crash if you don’t try
Took it to the edge, now I know why
Never gonna live if you’re too scared to die

Gonna disconnect from the hard wire
Time to raise a flag for the cease fire
Staring down the hole inside me
Looking in the mirror, making peace with the enemy

I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to

Open up my heart like a shotgun
Blinded by the light of a new sun
Get up, get up, get out and get done
For the first time I feel like someone

Breaking down the walls in my own mind
Keeping my faith for the bad times
Get up, get up, stand like a champion
Take it to the world, gonna sing it like an anthem

I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to

I am no man of steel
I have no heart of stone
Don’t tell me how it feels
I’ll find it on my own

Never gonna live if you’re too scared to die

I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to
I’m so alive, I’m so alive, I’m so alive
You can make it on a wish if you want to
You can make it on a wish if you want to

I’m so alive, I’m so alive, I’m so alive” – Goo Goo Dolls, So Alive (This is my song for today. I first heard it about a week or two ago and I LOVE IT).

I am sorry this post was so long and dull and awful. But I’m not sorry about all of the stuff it contains.

Like I said, no way but blue (unless you’re swimming in a lake or a river or the sea… In which case the colour is debatable).

 

Flatline Clothing Is Go!

Flatline banner

I was bored. I needed a project. I am too unwell to get a job yet need to be able to afford to continue living in London and would like to be able to fund a service dog in order to reduce my chances of running off with the grim reaper (and change my life by giving me back my independence and taking away the fear I have). I don’t like asking for handouts and had thought about selling t-shirts for a long time. I bit the bullet all of a sudden for some reason and Flatline Clothing was born (yes that name is sort of to do with health hiccups and heart issues. Took me so long to come up with a name that wasn’t taken!).

I’ve been sitting on this news for just over a month, slowly working on it as and when I get the time until today I have finally created a few products (hardly any of which are clothing, ironically). My vision sucks – I have double vision and a time delay and see after images. My left visual field is more of a left visual lawn. In combination with this and the fact that I can’t use graphics software, the logo is a little COMPLETELY POORLY CREATED. I fail epically at designing t-shirts and all the products are currently black and white because I like the aesthetic of that. But I have finally set up a website. You can get a teddy bear. A TEDDY BEAR. I mean come on guys, who doesn’t want a teddy bear? It’s wearing a t-shirt that says “NO WAY BUT THROUGH” on it because hey, that is a philosophy I live by. So not only is he a teddy bear, but he’s a motivational and supportive teddy bear who totally has your back when you feel like there’s no way through at all. There’s also flip-flops and a phone case in the same design and a mug and… Not a lot else at the minute. But hey, they make great gifts for people that need a little motivation every now and again. I didn’t set the prices, so don’t shoot me, but it’s just something I thought I’d have a shot at.

I plan to branch out into a bunch of health puns and motivational stuff, because there are a whole community of chronically ill people out there that I feel could really relate and personally I love it when a pun or phrase on a t-shirt completely connects with me in a way healthy people can’t. Anyway, Flatline Clothing is go (when I make the page active)!

Flatline banner

More Than I Ever Dreamed It Could Be

I sat on a huge rock right by the water’s edge, sand on my feet, the sun setting over a very calm sea, a disposable barbecue alight on the sand beside my rock. The two lovebirds sat on a towel together and cuddled up while my fellow third wheel and I sat on rocks talking about boats and I don’t even know what else. We skipped stones and we tried to climb on the rocks even when they went way past the edge of the shore (while the lovebirds were all cute with each other) and we had a can or two of alcohol each (well, the two boys and I did). There were rolled up skinny jeans and warm baggy hoodies and and laughter in the air. We took goofy photos of each other and pulled stupid faces and our laughter rang out over an otherwise empty beach. The sun sank lower and lower and across the eerily flat horizon ships lights started to blink and we laughed and screamed and shouted as we tried to count them and struggled to see what was where. We toasted marshmallows as big as the palm of my hand. When it got dark we turned the disposable barbecue into a bonfire and I was a little too tipsy (and unwell) not to sway as I stood and we laughed and laughed. And it felt like all we did was laugh, until my stomach hurt and even then I didn’t want to stop – I didn’t care. We howled with laughter. We played music. We sang along. We remembered, we made each other laugh (which I am surprisingly good at making people do whenever opportunity allows) My fellow third wheel and I copied the lovebirds’ little Titanic pose on the rocks.  

I have no words. None.
 

Sixth form friend’s girlfriend and I made our way back along the beach and it was about twenty metres to the sand covered steps back up to the caravan park. The tide had come right in and we roared with laughter as rogue waves completely flooded our route and we shouted that the sea had tried to eat us. We were laughing too hard to explain why we were laughing when the boys caught up with us (laughing too much to talk at all actually) and we didn’t even know what was so amusing but we had laughed so much all evening we didn’t want it to stop, we were free. Walking up the steps gave me chest pain, and shoulder pain, and a very sore jaw, and a weirdly hot/ numb feeling arm. Continuing up the slope (although extremely slowly) made me dizzy and breathless and everything started to drift out of focus entirely but I didn’t care. There was a suggestion that I should be carried, that we should stop if not, that one of the boys should attempt to find a wheelchair. Of course neither of these things happened, because Inam a stubborn little Icarus who flies too close to the (surprisingly very present here in England today) sun. 

We walked back to our static caravan barefoot and we showered off our feet and opened bags of popcorn and watched Family Guy. The lovebirds went to bed and my fellow third wheel and I stayed up until past 1am just talking about being broken and people’s reactions and how health affects life, but then Biomed and how amazing the human body is. We found a weird bug thing and it made such a noise when it fell into a cushion that we decided it had to be removed.

No worries. Not about a single thing. I was free. This is more than I ever dreamed my first holiday with friends would be. I have finally hit a normal young person milestone. It’s amazing. I am so, so lucky to have these guys in my life. I’ve only known sixth form friend’s girlfriend for two weeks (or just over) and we feel like we’ve been good friends for years! I’m so happy. Honestly, I am so, so happy. 

After the disaster of earlier, we took a very slow walk to go and play family bingo (which my fellow third wheel and I think we are going to skip tomorrow, because it was full of tiny kids and the prizes were… For tiny kids). There were arcades on the way and the lovebirds love the ticket machines, so my fellow third wheel and I wandered off and found an air hockey table. Playing that game of air hockey was so exhausting. I could barely walk beforehand and my eyes were trying to shut and breathing was already difficult before we started – by the end I was wheezing and (my breaths were) crackling and I was coughing up watery stuff and breathing in what felt like soup, but it didn’t matter. It was so fun. I had so much fun. Then the beach. Heaven. And I forgot how unwell I had been a couple of hours earlier, how close things had come. I didn’t care about how unwell I felt right there. Absolutely nothing mattered other than what I’ve described above.

This all feels like something from a film. And it is a post I never thought I would write. I didn’t think I’d ever get the chance or find the friends.

My lower legs are swollen and there’s a cut on my foot and my clothes smell of smoke and there’s sand under my nails. And it’s fantastic. Because it means I lived. I am so, so happy. Happy doesn’t do this feeling justice. I feel like a normal 20 year old.

And why did I share this? Because read through the other posts. Read the posts where I am defeated and hopeless and scared and hurting and I don’t want to carry on with my existence any more. Read the posts where I want the grim reaper to call my card but don’t have the guts to seek his presence myself. Read the posts where I am lower than low – the ones written after I nearly died or when I know I’m going to again, or when I realise how uncertain and potentially awful and bleak the future is. Read the post even a week and a bit ago where I was crushed by the words of a nurse and completely broke down for days. And then re-read this. Because I’ve no idea how I ended up here, no idea how I found this smile (the future is just as uncertain and potentially bleak, in fact I’m probably about I get very seriously unwell), but I don’t need to know how I just need to know that I did. There never was any way but through. There never will be. But I now know this, because I have been given a taste of it:

There will be another side. There will be moments where the world that ground you to fractured pieces of what once made up a human, will put you back together and lift you into the sky. You will find your feet. And realistically speaking, it will probably all fall away again at some point, only for the cycle to begin all over again. But just for those brief moments of amazingness, nothing will matter. They make all the pain and the hurt and the hopelessness worth it before we fall apart again. It’s ok to enjoy them.

I never in my life imagined I could have anything as amazing as today has been. Especially given my current proximity to the grim reaper (I can feel his breath on my neck)… But I now believe there will be another side, that there is, indeed…

 

Excuse my appalling sand writing. The sea kept washing it away. It is supposed to say NO WAY BUT THROUGH
 
My body is seriously outraged and malfunctioning (so I have to go and try to save it a little bit again) and it is half past two in the morning, so I will stop this now. I can hear the wind rolling in from the water and roaring around outside. I cannot believe this is my life right now. It is more than I ever hoped it would be.

I am no longer hoping this lasts, because hope isn’t a powerful enough word to describe how desperate I am to enjoy this entire holiday. I might be able to fend this off for a week? If I can’t, I’m not sure how I will cope.

But I do know, as always, that there will be no way but through.

The Eye Of The Storm

In an interesting new development, I seem to have discovered another malfunctioning body part (or at least, an out of control little bundle of cells which are totally harmless, but incredibly annoying). Actually, this isn’t a particularly new development, it just seems to have found a way to burst through the curtain of my denial, and as a result I have now decided that I should probably deal with it. Having said this, I’m pretty certain it isn’t anything that could endanger my life, it is merely a little bit unpleasant, and so I can’t quite bring myself to care about it beyond a brief acknowledgement of it every now and again.

I’ve found that being happy has allowed me to find my feet, and I am in a frame of mind where I can (slowly) start to let issues slip through the filter of my refusal to deal with anything, without being crushed by them or torn apart by the momentum they have gathered swirling round and round in my mind for so long. Things just feel a lot more manageable at the moment. Yesterday seems to have been a huge turning point. “The Mighty” made me feel ok with being who I am by sharing my story/ article on their social media page (it’s weird to see something you’ve written pop up on your own news feed multiple times, and I was touched and shocked by the positive responses people had to it, and the comments they made on my writing.) Other things just all fell into place right after that, because happiness unlocks doors, it would seem. It’s the second day of July, and already this blog has received more views that it got in the entirety of June. I think I will be riding the wave of that ten minutes of writing for a while yet (also I’m stupidly excited to have a place to live and I am so looking forward to having my own place again and being back in London. Uni is life and life is uni. I miss London more than I ever thought I could miss a place).

Last night I booked a luxury city centre apartment in Edinburgh for my old school friend and I to stay in the weekend after next. Yes, one of the awesome things I’ve been talking about and dreaming about for a long time is finally happening (hopefully this time I won’t be too unwell to make it to the train). This is a weird decision because y’know, Edinburgh is basically an entire city of hills, and I struggle to walk very far on flat ground before Skippy (my poop of a heart –  seriously, Skippy is an idiot) turns into a runaway train and my legs shake under my weight and eventually I feel like I’m breathing soup and my ankles swell… (You get the picture right? My body is too exhausted and fighting its health hiccups too hard to spare energy to human). Also, I’ve no idea how I’m going to actually walk through Kings Cross and St Pancras International (hopefully without some policemen having to save my life a little bit this time) or carry my bag or whatever. I should probably take a wheelchair and I already know that I won’t. This is still a defensive reaction to my health wrecking a lot of things and plans lately. I am determined to show it who is boss. Unfortunately, it is me… So… That’s ridiculously illogical, but it feels so necessary.

When I get completely sick of being limited by my health put my mind to it, I can push my body way beyond its limits, and refuse to acknowledge its protests  (I once walked 18km in the midst a medical emergency. Admittedly I did end up in an ambulance and intensive care at the end in a hospital over an hour from home, spent about 8 months in hospital because my health would not stop hiccuping, and literally had to be dragged the last half a kilometre, but I did the same thing as everyone else and sometimes that is all that matters to me). I have decided that for three days, this will be ok. Many people are convinced that I’m not well enough to do this, but those people don’t seem to appreciate the level of my desire to do normal human things again. I want this one weekend. Just one weekend, to be free, to forget that I am… In a bit of a situation. I just finished booking train tickets, and my friend and I (who somehow managed to arrange the entire thing over text, which makes it even more impressive that two university students successfully planned anything in advance at all) are SO EXCITED!

I’m in a really, really good place right now and I’ve honestly no idea how it happened. A few days ago I didn’t think a feeling like this was possible, it is so alien to me and yet so welcome, so… Good. And yet, I know I am simply in the eye of the storm. I’ve gone through a lot of rubbish to get to this point, my health, much like a hurricane, destroyed everything in its path (unfortunately all that was in its path were multiple aspects of my life, and the feelings of the people who care about me) and when this state of stunned happiness passes, things are going to get very rough again, because I am still not well, and at some point it will be time to face that fact all over again. At some point, the grim reaper is going to pop back for a chat and I will have to persuade him to leave me alone again.

Currently though, I am lost in this state of… Contentedness. The calm before the rest of the storm (because this one hasn’t ended yet). Things are falling into place. My little brother even wanted to have something to do to me last night. We ordered pizza. We laughed. He left his stupid games console and we actually talked. When the dog eventually woke up and got off of my lap (which he seems to prefer to his bed), my brother and I cuddled up on the sofa and watched a film into the early hours of the morning. My health is still going so wrong, but I don’t care right now, because everything just feels so right.

And when this eerie amazingness ends, the brief break from everything this storm has to throw at me will have allowed me to gather enough of the parts I had lost… To go through it all over again.

No way but through. (I would say bring it on, but reality seems to take this statement a little too literally).

The Welcome Alien Of My Happiness

Over the past few months there have been many occasions where I fleetingly felt what I thought was happiness – a break in the emotional pain in which the smile I wore on my face wasn’t quite as forced as usual. That was the feeling I aimed to replicate, that absence of the sinking feeling that has been dragging me down, a chance to breathe in the same sort of feelings as everyone else. I now realise that the feeling I had been aiming to someday maintain for longer than an hour or so, was not happiness, not even contentedness, but simply an absence of the opposite – a reprieve from the turmoil I often felt I was drowning in. How did this realisation come about? I was happy. Properly happy. I still am, I can’t stop it and not a single part of me wants to.

My health is still very much a major issue, a sinister monster that will try to tear me down again sometime soon. It is slightly better than it was, but the immediate future does not look good, and this is likely to have severe effects long-term, which should bother me but suddenly… Doesn’t. My health is still chained to my ankles in an attempt to stop me taking flight, and yet I have taken off, and simply dragged it with me. Even it, today, cannot hold me down.

I found a place to live. It isn’t ideal, it’s way, way above our budget, but I’m going to have to find a way to pay because I have been left with no other choice. I hadn’t realised how stressed and low the whole uncertainty about/ lack of accommodation for my second year of university was making me, until a couple of hours ago I secured a place to live. I was already smiling uncontrollably at the sudden increase of views on this blog, and the article I wrote for “The Mighty,” but the weight that had been crushing me and bothering me a lot was lifted with a simple phone call… And just like that, I took flight. My health hadn’t screwed everything up. I was ruling it, for a change. I didn’t need anyone else, I was paving my own way, and it felt good.

Instantly I wanted to move in, I wanted to be back in London, back in Mile End… I wanted to be in a place I could call home. I’ve been missing that city a ridiculous amount lately, and although it is less than an hour away by car, I feel so far away from the independent life that I had built there. The life that now, I can continue to build alone. There is of course still a huge question mark as to whether or not I will be well enough to continue my degree this September, but I am too determined to back down and delay proceedings now (unless I fail, in which case I will have no option other than to start my first year all over again).

A week and a half ago I couldn’t leave the house without a wheelchair, I was breathless just from standing, my body was shutting down and hanging around on the edge of a medical emergency that I was giving myself regular IV shots to stop it falling into. My blood was acidic, I couldn’t stay awake, I was seriously unwell and nobody had any idea how to stop it. They still don’t. I am still in a pretty rubbish situation, but compared to how I was before I ended up in hospital that week, I feel much, much better (and yet, I am so far below the threshold of normal health that I should not be able to call myself better at all). And I know this is a case of simply waiting for the grim reaper to come looking for me again, I know it won’t be long and I know that each time that particular health hiccup decides to slam me into my own mortality, it could be the last time I attempt to fight that fight… But I feel like I’ve come so far. I was broken by the reactions of a staff member who could help me but refused to listen (which inspired that article I wrote yesterday). Staff went on and on about how serious and how hopeless the situation looked, how there was nothing they could do to stop it happening again, something that should never have to happen if only my body could be abnormal in a normal way… But today I won’t be limited by that knowledge or by this body. And now that normal life and human selfishness has shifted out of the way a little bit, there is room for me to focus on my health.

I managed to walk around a shopping centre, slowly, but for the first time in a while. It felt like the achievement of the century, and not just because I emerged with some new clothes (there was a sale on), some awesome socks, a weekly food shop, and some notebooks.

For the entire day I have worn something new. A smile – and not just a little smile, a great big grin that I was powerless to stop. And the rest of me seemed to smile with it. I felt I feel on top of the world. I am overcome by this overwhelming joy that makes me want to run around and shout from the rooftops… This is happiness, I now realise – this carefree feeling that I am flying. It is weird. It is alien. I’m not used to it. But I like it (and I wasn’t sure where else to share it so here it is).

Things got even better when I saw that Bastille have announced tour dates for the world tour of their upcoming album. If you don’t know the story behind why the music of this band means so much to me, you can find it here. The friend who is going on a road trip with me at some point this summer might be coming to see them perform in London with me, and at the knowledge of this my smile grew even wider.

Some may look at the things I am dealing with at the minute, and the state of my health, and think that I have nothing to be happy about. They are wrong. It is because of those things that I have so much more to be happy about. They make the little things absolutely huge. They turn tiny achievements into huge successes. Kind of like old fashioned camera film, I guess sometimes we need to be immersed in complete darkness in order to develop enough to be able to see the brilliance in what we were holding all along. To some, this situation is complete rubbish, I can almost hear them thinking: So what you wrote a thing and got a flat, right now you probably won’t ever be able to live there, you’re at least going to almost die again first, the next few months are going to be awful. How can you possibly smile?

How, today, can I do anything other than smile? Stress over the things that you can control, over the things you can change, and let everything else be or it will ruin the things that you were given the opportunity to shape for yourself. There is good in even the worst of times, it just whispers and is never acknowledged above the noise of the disasters that surround it. Somehow I’ve found a way to give the good a megaphone. It is tiny, but right now it is drowning out everything else. Who cares if it doesn’t last? It is here right now and I can ask for no more than that. Today, I have felt nothing but happiness. I guess my mind is reloading the empty barrel in the shotgun of its motivation and optimism before it hits the next rut. I am going to get much more unwell again at some point. But today that is a weight I can finally handle.

No way but through.