How Did I Get Here? – Thoughts on Starting Another Degree

I’m not ok in any sense of the word; physically my heart is struggling, my body has decided to become spectacularly anaemic, and my health continues to hiccup. Mentally, I am in a complete crisis and have been for some time – I don’t know how I’m alive, simply because I’ve no idea how I persuaded myself not to ensure that outcome with my own hands.

But right now I am on a bus. A new version of the old London Routemaster that my granddad used to drive along this route for a living. I am on my way to a new university, to start a masters in cardiovascular science (a very competitive course at a world leading university, that somehow and for some reason picked me). This is a day that for the last three years was something I very hypothetically talked about from time to time. I still can’t believe I survived and acquired my undergraduate degree, let alone that I’m about to start a graduate degree that will hopefully give me the qualifications to make sure that someone else’s future differs from my past and my present.

I’m going to hold my hands up and say it has been a struggle. I denied myself any admission of this reality until I was completely broken. It’s hard. Everything right now is overwhelming and everything is a struggle I no longer have the mental energy to know how to face. But I’m here. I’m somewhere even I never thought I’d be. I’m terrified. I’ve spent days having anxiety (a very unpleasant new addition), nightmares, random crying moments and all sorts about this day, because I didn’t know how to do it. I have been dreading it. Now it’s here and I wonder how on Earth I made it. How am I alive? How did I manage to pass my third year without attending a single lecture, becoming bed-bound, losing most of my friends and replacing their messages with those of paramedics and doctors and other people who understood how it was simply incredible that my body (let alone my brain) could still function. The word inspirational has been thrown at me a lot and I still hate that. I am buckling and crumbling and have no choice but to keep living the life that has caused me to do that. It’s not optional. If it was, I’d be insane not inspirational.

Anyway. I am about to meet a group of new people at a university where nobody has ever seen me unconscious, where nobody has seen me vomit blood, where nobody has seen me in a wheelchair or being stretchered out of university accomodation. I can pass of as an “everybody else” and that’s refreshing. They have no idea how awful I feel both physically and mentally – how much both elements of me are straining to breaking point. They aren’t scared of my body or to be around me. They’ve never seen me in resus, they’ve never had to give me CPR or visit me in an ICU and sit for hours while I lay there totally or if it with no idea anyone is there at all. They’ve not been on the emotional rollercoaster that is my life. They’ve not received messages at 3am when I’m convinced this near death experience is the one where I finally run off with the grim reaper and there’s nobody else there to share the terror. They’ve not seen me have flashbacks in the back of an ambulance, not seen me vomit with fear at the sound of a siren, they’ve not seen me attached to 5 IV pumps whilst riding the drip stand as a scooter. They’ve no idea how much I carry and the effort I go to in order to hide it. They’ve no idea how much my health issues have knocked my confidence, how lonely I feel or how many years I spent in hospital missing all the milestones they hit. They’ve no idea what a miracle it is that I’m still alive, no idea that my former personal tutor gave me a superhero cape after my graduation because he had never believed someone like me could exist let alone get a degree and a decent enough one to get me into a masters programme.

As far as these people are concerned my biggest stress was deciding what to wear, moving into a new flat, the presentation I have to give tomorrow. They have no idea of the wounds haemorrhaging deep inside my soul. They’ve no clue of any scars or how deep they run. I’m just and everybody else today. And that’s why I’m nearly crying on a bus.

Those days you don’t know how to survive? Those days where you can’t go on any more? Today, like most of those before it, is one of those. And I swear to you my former self was very right.

There’s no way but through.

All you need is half a chance. You’re still here. You’ve survived 100% of the days you didn’t know how to, got through 100% of the things you didn’t know how to cope with. If you can do that, given your record, you can do today. You’re doing great and it doesn’t matter if you have no idea how you got where you are right now, what’s damn impressive is that you’re reading this right now. Thank you, I’m grateful but I’m also rooting for you.

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“The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

– R. Frost, “Stopping by Woods on a Snowy Evening

In my mind, this post stopped at the end of that quote. In reality, I also almost stopped recently – wrote a final thank you card pleading for forgiveness, and a list of contacts, stuck both tear stained articles on the wall at the end of my bed, and prepared to curl into the darkness of whatever waited beyond daylight and moonlight. I could not see the wood for the trees. There comes a point when you are so tired – tired of hurting (physically and mentally), of thinking, of sinking, of almost dying, of being, that all you want is a break. And when life won’t give you that break, when it sees your white flag and doesn’t cease its fire… Your mind, the lone and weary soldier, pulls out the revolver that has until that point just been a comforting presence in your metaphorical waistband and decides that it has no option but to pull the trigger whilst the barrel is aimed at its own skull. The unpleasantness cannot take you alive. The pain is not one you can endure.

I am in a great deal of physical pain after my latest heart surgery, taking morphine and tramadol just to try and sleep through nerve pain caused by scar tissue sitting on top of a nerve. But my mind… nothing could numb that.

My revolver was medication. Medication that sat there, sparing me from further unpleasantness when I took it at the prescribed dose, but that any higher dose was also my revolver – deadly. Quick. Freeing. The knowledge of that was enough of a comfort to keep me going. There was a failsafe. I didn’t have to hurt forever. Just one more day. And then the next day, just one more – and while I couldn’t imagine it, I knew there would be a day where survival wasn’t a task, but something I didn’t have to think about. And then came the day I wrote that card, and made that list, and could not stop the tears.

I have been saved all too often lately by words. Words that came from places I didn’t expect them to, from people who understood me in ways I wished those closest to me could. First, my personal tutor at university (who I also almost died on last week, because my heart is an ARSE) – with one simple sentence about PTSD that took away the stigma my mind sharpened and used against itself, and completely transformed the way I saw myself. I used the support available for me. I asked for help I had been turning down for years. Then, the other night, a dear friend, amazing human, and creative soul behind this blog, who accidentally saved my life with words that found me in a place that nobody else (myself included) could.

And then I remembered the poem that begins this post.

The emptiness of oblivion is comforting, tempting, enchanting, but not a destination I am yet supposed to visit. I owe it to the humans whose kindness and understanding have been transformative forces in recent weeks, to move beyond its temptation, to carry on going wherever I’m going. Those people made me realise that feeling like this is not weak, nothing to be ashamed of, but understandable, excusable, human… and survivable, somehow. I made no promises to them anywhere outside of my mind, but I cannot betray them. I made promises to myself – to get this degree, to do something, to raise money to help fund research so that other people’s bodies might not drive them to the hell I have been to/through. And thanks to people (some of whom I have never met) I see myself as someone worth keeping promises for. I have a long long way to go before I get rest or respite of any sort, physical or mental, and I have to accept that, grit my teeth, turn off, and keep walking – sobbing and screaming and writhing in pain if that’s what it takes (also things that before I took as signs of my own weakness, and now acknowledge as a strong person doing anything and everything they have to but give in). It doesn’t have to be easy, and I know it won’t be. My situation is tough, it’s even recently been described to me as “crap” by somebody I expected to brush it aside. I’m allowed to find it tough. I’m allowed to hurt so much I can’t keep going. It’s ok to cry myself to sleep, to want to never ever wake up again. But these thoughts I keep inside are promises I have to keep. I have an unimaginable amount of miles to go before I am allowed sleep.

The way out of this is not six feet under, or wherever the wind may take my ashes. It’s through.

Agonisingly, impossibly, soul destroyingly (yes I know destroyingly isn’t a word)

There is

No way but through.

I sat myself down and had a thought at myself (if that’s even a thing).

When you can’t run, walk. When you can’t walk, stumble. When you can’t stumble, crawl. When you can’t crawl, drag yourself. When you can’t drag yourself, roll. When you can’t roll, just hold on. When you can’t hold on, reach out. When you can’t reach out, scream. When you can’t scream, talk. When you can’t talk, whisper. When you can’t whisper, blog. If you have to fire your revolver, fire it into the sky. And through it all, play Bastille. It’s colder six feet under. It’s lonelier when your ashes have been dispersed by the wind. There will be far more tears if you let go, the difference is, they won’t be your own. There is no way to live this life, or to be a spectator to it, that does not involve hurting. And no form of pain is a choice or a flaw – it’s a limbic system and nocioceptors (hello inner biomed student) – unconscious, understandable, protective, logical measures. Don’t expect to live and not hurt. Don’t expect to hurt and not still find reasons to smile. Pain may right now be all you feel, but even if it is ever present, it is not all that waits.

Finally, I have been taught that it’s ok not to be ok. That’s the most valuable thing any lecturer has taught me, the most precious gift a friend has ever given me (thank you blogging human, you know who you are). Something I hope not to let go of. Something I will someday pass on.

“I Don’t Wanna Hit The Ground”

“I don’t ever wanna stop

You could not have made it up

Who’ll catch me when I drop?

And stop me falling

Is this ever gonna stop?

Can you catch me when I drop?

I know there’ll never be no superman

[…]

But if I fall off this cloud

If I fall off, oh superman

Oh superman

I don’t wanna hit the ground

I don’t wanna hit the ground

I don’t wanna hit the ground

Oh superman

Oh superman

Oh no

I don’t wanna hit the ground” – The Big Pink, Hit The Ground (Superman)

I am trying to do uni work, and I am trying to think, but I can’t breathe – it’s fast and laboured and it’s my body’s futile attempt to regulate the acidity of my blood (it’s called Kussmaul breathing and I know it all too well). I can barely keep my eyes open, and I’m home alone with my dog, who woke me at 6:30am this morning crying and shaking in pain (he NEVER makes a fuss when he’s hurt normally, not even after surgery. Naturally I FREAKED OUT, forgot how unwell I felt, gave him my quilt to lay against so his weight wasn’t on his hip, and just held him and stroked him for two hours because he freaked whenever I let him go).

Today I don’t even know what it is. I’m exhausted, but not just physically. I want to just crumble. And I want to carry on. The point is, I can’t carry on. Physically, this body is not letting me human at the moment, and trying to keep it alive is exhausting and increasingly difficult. I know I need a bunch of IVs. I know my heart is annoyed and my kidneys are annoyed and my blood is leading a mutiny against every cell in my body. I’m… Scared. I know I’m going to fall. And I don’t want to hit the ground. I don’t want to stop living this life, I don’t want to stop being out in the normal world, I don’t want to almost die again, I don’t want 8 attempts to get in a central line before they leave my neck alone. I don’t want to be in the process of dying as I write this. I’m so unwell even my mum was starting to get concerned before she left to go to lunch with her friend. I told her earlier that I have another migraine, because I’m not sure whether she’ll be helpful or just get angry and shout at me again for the ways in which my health has torn her life apart over the years.

It tore her life apart, and she got to shut it out. She got to shout, she got to walk away when she needed to… And I haven’t had that. There’s never been any pressure relief, no break, even for a second. Honestly, I laid in bed last night drained physically and emotionally, unable to move, wondering how on earth I’d made it through the day, with nothing left to give… And I knew that whether I had anything left to give or not, I was going to have to go through exactly the same thing again today. And tomorrow. And the day after that. And it isn’t just feeling unwell – it’s what that feeling means. It’s that which gets to me. It means the grim reaper is keeping tabs on me, clawing at my clothing but not able to take hold yet, waiting for me to slip, to stumble, to sleep through one 30 minute alarm… I have no idea how I’m alive. Honestly, right now, I have no idea how I’m alive. I’ve no idea how I’ve carried on over the past few days so clearly in a serious medical emergency. Hope. Luck. Stupidity. Home-made IVs. But now I’m breathing like I’ve run a marathon, and I can’t stop it. I also don’t have the energy to maintain it (fun when that eventually happens… NOT). I don’t even know what I’m feeling right now emotionally. It’s all rushing through my head to fast for me to be able to grab hold of a feeling and identify it, and at the same time there’s nothing. I just want to cry. I know it’s pathetic, but I just want to cry.

“Yep, that is a… HIGH heart rate” The pharmacist at my GP surgery remarked about an hour ago when I went for a medication review (this is the first appointment I’ve been to with any doctors at all in MONTHS). New medication was added, he told me my kidney function was variable and sometimes… Completely awful. I sat in front of him hoping my body wouldn’t betray me as we discussed Donald Trump and Toblerone. I was glad he wasn’t a doctor, because my body was SCREAMING that I was seriously unwell, and any doctor would have picked up on the signals right away (also paramedics who are buying their lunch and encounter you in the queue to pay, as I’ve learned).

And I can’t go. It’s like I’m having a fight with this big powerful thing that stands in front of me, and I scream at it and hit it but it won’t get out of my mind. It just reminds me what happened in hospitals before. It replays it like I’m there. And I can’t. I can’t get over it. I can’t get round it. And I lose myself in the frustration, in the helplessness, in how illogical it is.

“I owe it to me, now yesterday’s gone

Doing it on my own

I know I’m unique, wear my scars with pride

Doing it all alone” – The Big Pink, Lose Your Mind

Time to order pizza I guess. I’m not sure if reading this you know what it feels like to feel your life (or at least your consciousness) slipping away, but I’m there right now. And honestly, I am so, so exhausted that it’s almost a relief. I am past the terror. I just want to order a pizza and hope I somehow manage to get up off of this chair (my muscles feel like… I can’t even explain). And no matter what happens, this is my immediate future. This state. Right here. It will be my tomorrow if I somehow hold this off. It will be every tomorrow until something gives – it’ll probably upset another health hiccup, and maybe that will be the thing that almost kills me. I can’t even be scared any more. I don’t have the… I can’t even… Even. I don’t want to stop. I just want to… Just be present in my life and get to feel sort of my age. I just… This is sounding so, so ungrateful but today I don’t even know what I can’t even deal with because I’m at that level of not being able to… Even… Words.

I’m going to pass out now, excuse me while I temporarily lose consciousness.

No way but through.

This One Is Hard To Write

There is an elephant in this blog. I skirt around the subject briefly, afraid of its stigma, ashamed of the way it makes others view me. It makes me feel weak and even fraudulent to discuss it as an issue, and the words associated with it make me uncomfortable to type let alone to put out there… so I don’t. Mental health. My mental health (trigger warning maybe, I guess).

In the one space that I have to be open and feel like myself (this blog), I cannot even bring myself to disclose any significant information about my mental state. I replace mental with the word “emotional”, I mention terms only when I am too desperate to care, and the rest of the time I keep myself stuffed into this box. I mention my physical health issues with considerably greater ease, and an equal shame. But the two are inevitably linked, and only one (even by healthcare professionals) is ever properly addressed.

This post is going to be hard to write. But I’m not writing this one for me. I’m writing it in the hope that somebody else who hides from the stigma and the shame might feel a little more comfortable in their skin, that they might take the step that I just took. It is so, so difficult to share, and excuse me if there are mistakes because I’m not reading back through it, but this is for other people in my situation – not even with physical health issues, those who simply don’t know how to face the things they are facing some days, who are crippled by a condition that we associate as an emotion and nothing more (see, I still can’t write the “d” word).

Here goes nothing… (Honestly you have no idea how much I don’t want to do this).

It was someone else who sparked my actions. They’ve been through crap, utter crap. And they learned to love again. They learned to love and value themselves again. They felt like nothing, had no self esteem, but they built themselves up into something recognisable to themselves as a functioning person. They overcame. They sought help. They talked. And then we talked, about it all, and I saw this living proof that people do find the other side. They do rebuild, recover, after unimaginable suffering and cruelty. After learning not to feel anything towards anyone, let alone trust or love, people can reach a state where they open the doors to their wounded, lonely hearts and tentatively try to let someone in again. They had been in the emotional state that I am stuck in, and they are so far from it now. They are in a relationship, a long-term one, and it is terrifying to them, but it is healing. It was like looking at who they were, and who I am… with who they now are, and where I could not (until that moment) ever imagine being.

I can’t talk about why. I can’t talk about the events and issues that sparked everything off. My physical health and hospital admissions are a significant contributing factor. But I can’t talk about the other things. I try to open up, but there is no trust, no relationship before I am shoved into a room with a stranger and expected to talk about how I feel. I see a psychologist due to the nature of one of my physical health hiccups. We don’t gel well, I find her unhelpful and a little patronising, although she’s extremely nice. All she wants to talk about is my health (understandably, duh) but for the first few times we met I just talked about everything that was going on at university last year. And the rest of the time I state fact, not feelings, because I cannot open up to people I don’t know (or all but two of the people I do know) due to past experiences. I’ve sat in her office and begged for help, told her that I can’t cope, and walked out without a word being said about the issue other than I’m sorry you feel that way. But she deals with a lot of people with the same diagnosis I have and I am moved on, thrown out into the world having been asked questions I couldn’t answer and been forced to face the health stuff I am running from, and just because I don’t open up doesn’t mean that it doesn’t start a cascade of outpouring emotion from somewhere deep within me.

For a long time I’ve known that this individual and I are never going to get anywhere. I can’t gel with her and I think it’s too late to hope I will. But I have left my denial more often recently, and for a long, long time I have known that I need help with this area of my health (you really do have no idea how difficult it is to write this, and how badly I currently want to delete every word). I knew I needed to find somebody else, just like I know I need to open up… But I would pop back into my denial because that was the only way to carry on at all, and neither of these things occurred (I doubt the latter ever will).

Recent discussions with my mother (who now refuses to act like there are any issues within our family home at all, which frustrates me a lot but makes things so much easier) dragged up the broken emotional state I am often left in by my family. I have been belittled for so long, not even intentionally, that I belittle myself constantly. I feel like less than nothing. And it hurts more than I know how to convey.

I am becoming extremely physically unwell, and my mental health is stopping me seeking treatment. I am afraid in a way I cannot explain. I am living under the thumb of that fear, it stops me acting in the way I know I should. I’m not even afraid of meeting the grim reaper. I am terrified about university and the impact on that, I am scared that everything that happened before will happen again, I’m scared that they’ll make me leave, that they will take away what on almost every day (in the absence of my dog) is my only reason for living.

I am living alone with no flatmates or family for the first time (not through choice). Until this, my family’s dog was an incredible help to me (which I am aware sounds ridiculous) as he was the only thing that made me feel that I was good for something and had a purpose, and that motivated me to carry on for him, because he needed someone to take care of him. I’m finding it really difficult to cope with things alone, and often want to stay in bed because I don’t know how to face the world. I take great comfort in the company of my bonsai tree, because hey, it is a living thing. But even a fish. I’d really like a fish. Or maybe sea monkeys. Something living. But there’s a no pets policy here.

I have had extremely unpleasant experiences in hospital in the past and relive them on a daily basis which causes me a great amount of distress. It feels as if I am living through the same things again and can be brought on by smells, sounds, and sometimes for apparently no reason. I have nightmares about the same events which are so real that sometimes I am scared to sleep. This means that when I’m unwell I leave it much later than I should to go to hospital because the fear is still so fresh, and become much more unwell than I needed to get. This is also ruining my life in many other ways.
On top of all of this, I am trying to deal with the normal pressure of university (although I’m pretty sure it isn’t normal to panic and feel guilty if you’re doing anything other than uni work. I’m up to date – sort of – but I constantly feel disastrously far behind and so, so inadequate and undeserving of my place at this uni) and the anxiety around how they will react about my health issues (they have been extremely unsupportive and unhelpful in the past).
All I can do in the eyes of my family is screw up. My health tore their lives apart almost as much as it did mine. It broke bonds I don’t know how to rebuild. They resented me. When I get unwell now, there’s this huge outpouring of frustration at me sometimes and I feel like I’ve done something wrong. I’ve been told I’m pure evil, that I’m ruining their lives… And then I’m told not to hang onto those words because they weren’t meant. But I have already hung myself with those words, they kill me every time they are shouted. And when I cry, that seems to annoy them more. I am even shouted at for loading the dishwasher – because I didn’t place things exactly how a certain person would have. I’m shouted at if I don’t unload the dishwasher. I’m disciplined and treated like a child, and not even like the one they like because I have always been the second rate sibling and my dad looks at me like I am filth. I will never be enough for them, and when I’m in that house I don’t know how to live with that.
I’m lonely. I never thought loneliness could bring a person to their knees until I moved here. I dread the weekends. There are no lectures at weekends, which means my life stops for two days. It means there’s no reason to see people, and a lot of my friends work or go back “home” for the weekend. I am dreading the four months of summer where there will be nobody about. I dread coming home, shutting this door and being alone. I fear I’ll collapse or die and nobody will know. I watch vlogs on YouTube and listen to podcasts to try and fill the void, but I hate the lack of company, the lack of sight of anything living. I have not felt loved for years and years, but I have at least never felt alone. And I am so alone. I am so lonely that I fear it will kill me, because it almost hurts.
“I hate it when I can’t hide my loneliness […] what do normal people do when they get this sad?” Mr Robot (I’m actually a little OBSESSED with watching Lucifer but hey this show too)
I considered drinking again. I considered trying drugs for the first time in my life, or placing a cigarette between my lips to suffocate away the pain. I don’t feel lovable. I feel rotten. But I’d rather hurt than be like this. I am craving human company so much I would even prefer to be hit again. Over and over. I hate hurting. I do not want to hurt and I don’t enjoy it at all, but physical hurting feels better than whatever this is. I feel like I deserve it, I feel like I deserve to be punished because I feel like I’m that rotten and awful and abominable (isn’t it amazing the things people can make us believe about ourselves). I don’t care if the company is violent, I just want somebody to want me for something. There is a disconnect between me and humanity, it seems, and now I am shut in this room with more and more room to withdraw and I just want to be with someone. Even if they hurt me. Which sounds as sick and messed up as it is. I’m sorry for writing that.
And there is more, there is so much more. But the thing is, the “d” word isn’t an emotion, it’s a condition which has been linked reduced levels of serotonin in the brain and CNS,  which triggers a crippling mental state. And if it was labeled as “cerebral serotonin insufficiency” or something else, nobody would ask What do you have to be depressed about? nobody would tell you to Just cheer up and stop thinking so negatively. People wouldn’t judge.
And I know people don’t just do this with mental health, because I’m equally as shy and reluctant to admit to people that I have type one diabetes. People think type one and type two diabetes are the same. They aren’t. They both cause patients to produce a lot of sugary urine, and diabetes mellitus  essentially just means to pass a lot of sugary urine. Type one is an autoimmune condition involving the destruction of the beta cells of the pancreas which produce insulin, meaning that there is no insulin produced. It cannot be controlled with diet alone and unless the superfoods people suggest are going to rewind time and prevent the autoimmune elimination of these cells, no amount of berries or whatever else people may suggest is going to “cure” the condition. It is serious. It can kill quickly. You have to do injections or inject insulin via a pump, there is currently no other treatment option for this condition. Type two… The pancreas is fine, it’s happy, it’s whole. The cells just aren’t so responsive to the insulin, for whatever reason. It can most of the time be controlled with diet, or tablets that make the cells a little more responsive to insulin. But people see the word diabetes and think immediately of type 2, because it is associated with obesity and whatever, and the first time I was asked, so when were you fat then? was the last time I openly talked about having diabetes (there’s a post/article on this topic here).
But my point here is there are stigmas everywhere, and it is hard to overlook them and have the confidence to do the things we need to do for ourselves, and allow ourselves to openly be ourselves. These societal stigmas in me induce a great deal of shame. I feel weak discussing my emotional state and seeking help for it always seemed pathetic and weak of myself to me… Yet when others did it, it seemed so justified and normal.
But I don’t want to turn to alcohol again, to go back to getting drunk before I even get out of bed because the only way I can face the day is to be too drunk to feel. I don’t want to end up in a situation where I want to end it all. I briefly consider it, and it frightens me. I have known for a long time that I needed help. And so yesterday night, just before midnight, I sat in front of my laptop screen and read through a website full of private psychologists until I found one that seems perfectly suited. One I think I can gel with, and whose approach I liked the sound of. She has a specific specialty in dealing with people with chronic health issues, but also with PTSD, anxiety, depression, low self-esteem (pretty much me, or at least the person I am becoming – the anxiety is a new thing, is mostly focussed around university reacting to my health, and is highly unpleasant). I don’t want to do this. I don’t want to pay to sit in a room and hurt, and squirm, and hate myself for being unable to open up no matter how much I try. But I need to.
Because of all the things I have, I fear this is the area of my health that is currently at the greatest risk of killing me (ok the frequent early acidosis is also a rather pressing issue but…). I am afraid of the thing within my skull. I am afraid of me. And I was suddenly desperate. Desperation is the only emotion I experience that is more powerful than fear, it is the only thing that will overcome everything else and drive me to do whatever needs to be done – it is what makes me give in and go to hospitals, and it is what made me click send on that email. Because I can’t cope any more, especially not without my dog, who (I know it sounds ridiculous) was a huge emotional support for me and was so helpful to hold when I had flashbacks or nightmares. He made me feel special, needed, wanted. I had to function in order to keep him alive and happy, and that was so helpful to me. But I am desperate now. I can’t cope and I can’t pretend everything is fine – there are too many cracks in the mask for it to hide me any more (I am amazingly convincing at acting happy, which is super unhelpful because people always think I am ok – but I’m too ashamed to let them see I’m not and I. Can’t. Talk).
And I’m sharing this because hopefully in a few years’ time (it won’t be a quick fix) I can repost this, against something written by someone in a much, much better place. And I want to be that living proof that there is a way thorough. I want to spark actions like this in someone else just as my friend has for me.
I might even try to find group therapy sessions or an online person to talk to (there needs to be SO MUCH more emotional support and groups out there for people with physical – or even any – health issues. It would end the isolation and the feeling that nobody gets it, and it might have helped stop me ending up here). But anyway. I’m that desperate. I’m that scared that the feelings to just… Go… Might come back, and they always seem to be stronger than I am.
I’m a mess. And I am so ashamed of what I have just written. But this is the start of the end of that mess (I hope, or at least tell myself, because without hope there is nothing left to hold). The hardest step is meant to be the first step, but you have to use the momentum of it to carry you forward. Accepting that you need help and asking for it are a world apart. Engaging with the help that is offered is even more difficult, but I’m trying. I am finally in a position where I am trying. I haven’t showered for five days (this grosses me out too, I am wearing so much body spray I’m surprised I have any left). I haven’t changed my top for three. I was almost late for lectures yesterday because I got out of bed at the time I would usually be standing outside the lecture theatre (20 minutes before the lecture starts, I get so stressed about being late that I like to make sure). I’m usually ridiculously tidy but I’ve let everything slide, there is stuff everywhere and I don’t care enough to pick it up, but at the same time the mess bothers my neat brain. I am in a rut. I am such a mess. But… I want to change this. And I can but try.
It isn’t fair for me to put the pressure of my issues on friends or uni parents. That isn’t their role and I am selfish and disgusting to put them in the situation where they feel they need to try and support me. I don’t know how to talk and probably won’t, but I’d like to find coping strategies and I hope then I might slowly learn to be able to talk to people that aren’t my uni parents.
There’s a huge pressure in living each day knowing you could die, I guess. I kind of forget that. I overlook the obvious huge issue. I am determined to live again, or die trying.
No way but through.

The Barrier Between “Me” & “Myself”

There are moments where I conclude that my heart (aka Skippy) is a poop, and want to rip it out, slap some sense into it, and then stitch it back into my chest again. I had one of these moments earlier. I think I am still having one of those moments, because clearly trying to co-operate with the stupid ball of muscle is not working (I mean seriously Skippy, you’re such a poop). I drew an anatomical drawing of a heart earlier, and it accidentally turned out (pretty much) the size of an actual heart. It’s on my wall now…Wait, I digress. The cause for my moment is as follows…

They changed the date of the uni & medical school swim club trials to this weekend (specifically, the day before lectures start) instead of the 2nd of October.

My thoughts upon discovering this were:

Thank goodness I checked (to see if they’d put up a time to meet) this week instead of next week (I don’t know why I did, maybe part of me knew).

And then:

Aaaaaaaaaaaaaaahhhhhhh! I have 5 days to magically be able to swim 100 metres in front of 2 coaches (one of whom is an ex international sprint and middle distance champion, the other of whom is a successful masters swimmer) and THEN take part in the hour long taster training session, and then team relays… And remain in some state to go to the first swimming social of the year. (That is absolutely no trouble at all for my 12 year old self. But as of last week I’ve discovered that I currently can’t. Even. Swim. More. Than 20. Lengths. Let alone keep going for an entire hour of warm ups and main sets and NOPE my stupid heart just does not agree). Oh yeah… There is also the whole point that my cardiologist told me not to swim but… I promise not to pass out in a pool and drown, as he fears. And denial keeps this safely (ok so unsafely) out of my mind.

I really, really want to be part of this team. It’s such an awesome opportunity to train with top level coaches and access amazing facilities (the uni team trains in the Olympic pool for goodness sake. The. Olympic. Pool… I mean, that also presents a huge issue to my current self because it’s 50 metres… And my heart does not agree with that). I really really want to take advantage of the social aspect of a swimming club, which is one of the main things attracting me to the idea of swimming again. I joined a swimming club by myself before (in that nobody else new joined at the same time as me) and instantly made friends each time I changed squad. Despite this, I’d really like to join with all the new people, so that I can make friends while everyone is awkward and in the same position, rather than trying to break into a friendship circle that already formed in my absence (as happens when you nearly die in freshers week and come out of hospital to find that everyone made friends and the ones you had ditched you).

There are social events every Wednesday (as with most sports societies), which is amazing, and means I’d get to hang out with this whole new group of people I’m going to meet on, a fairly regular basis. I’d like to be there for the first social event because I feel like that’s a bit of an ice breaker. I just can’t wait to have the kind of friends that you make through sport. My swimming/ football friends are some of the closest friends I ever had, and they’d come round my house before or after training… And I just miss having that team feel, I miss it like I’m missing my dog right now.

It would be so awesome to start fresh in the middle of continuing familiarity, to have my own thing and my own space with nobody I know and this whole other group of friends and everything, away from everyone I know. It will be a great opportunity to just put myself out there and be myself for once (something sport gives me the confidence to do) and I’ll be wildly outside of my comfort zone because I get weird about meeting new people and being by myself, but being the only person I know will force me to… be a sociable human, and make any friendships even more of an achievement. I kind of love that I don’t know anybody else who swims.

Having said that, their training sessions last for two hours… I can’t swim for two hours (well, my body could, but my heart can’t). The types of people on the social media page are mainly serious national level swimmers, although that’s just the top level squad I guess, as the development squad is for people who can swim 100m but stop at each end for a while, and the middle one is for people can swim 100m freestyle. To swim in the competitive squad I have to swim 25m of each stroke, which I can do and used to do so at every training session, but would currently kill me (I’m sorry, I know you guys couldn’t care less about details like this). Knowing that, I know I can make the team, as I can meet the requirements for at least one of these squads. But my heart will not be able to swim 100m and then do an hour’s swim session, let alone relays.

I remember club swimming. It wasn’t easy, it was relentless. And I started sitting out laps because I couldn’t breathe (thanks heart) until eventually I just couldn’t swim any more. I remember choking on the fluid that came from my lungs as I breathed heavily, feeling like I couldn’t breathe, with water catching in my throat as I breathed in and crackling into my mouth as I breathed out heavily (I’d have nightmares about this feeling where my coach screamed at me to swim through it, because at training he’d get super angry when I kept stopping and stuff). I remember the wheeze and inability to breathe that didn’t get better when I used my asthma inhaler. I remember the necessity to breathe so often messing up the rhythm of my stroke and making me even more out of breath. I remember the cramps, never getting muscle fatigue when training because I could never work hard enough to make my muscles ache. I got that after swimming 10 lengths the other day. 10 lengths isn’t even a warm up to a swim session. So my heart is the barrier between me and myself (I will always be me, but it is so much harder to be and feel like myself).

I’m so, so frustrated as I really want to go for this; I don’t want to pass up this opportunity, but it will probably completely break me. Also, I can’t afford to pay to get into the swimming pool, which means that I can’t train… Wait, does that also mean I couldn’t get into the trials even if I wanted to?  

Anyway, I am having multiple moments where I just feel like my health is wrecking things (I’m sat here writing this with feet so swollen that they feel weird – thanks for that one body. Heart/ kidneys… Can you not?). I don’t feel unlucky about my health, in fact I feel so fortunate that I’m not in a far worse situation and I’m incredibly grateful that I’m so healthy compared to some. It’s just that even at the thought of swimming again, this room feels so much less lonely, I have this new energy… I want to go for it… and yet I am completely physically incapable.

No way but denial.

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!)

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.

Onwards

“I can’t believe we managed to get on top of this” my mother said for what felt like the millionth time as she cooked dinner yesterday. I’d managed to get out of bed and made it downstairs, where I became stuck, because my heart was (and still is) extremely upset about my body’s three day slip into severe acidosis. Like my healthcare team for this hiccup, she was still talking about me going to hospital. I felt better, but only because I’d been so near to the point of no return. Unfortunately, as a health professional, my mum had enough medical knowledge to understand how bad things had been and still were.

“You and I both know that you are still acidotic – it takes at least 24 hours on IVs and drips to correct it, I can’t believe you’re even considering leaving.” She said when I continued making plans to meet my godfather and his two young kids in London to go to the Natural History Museum today. I sat dazed, my heart racing, extremely dizzy, my head thumping, and breathing still a ridiculous effort. I still should have been in a hospital, I still needed IVs… but I still couldn’t face it.

If I’d been at uni yesterday I’d be dead. If I’d thrown up after my mum had left for work, I’d probably never have woken up again, because I had no idea that my heart was grumpy because of my pH, and was honestly in no state to do anything other than drift off and hope I’d sleep it off. It would have had me. There’s no doubt in our minds about that.

I checked my blood just before I attempted to eat some dinner, and the level of the chemical that had already been at way above safe levels had increased by 50%. It was still at levels high enough to be in a medical emergency, and did not want to dip below that threshold. I felt better, but things were still not good at all. At this point my mum told me I’d be going to the hospital if things didn’t improve by today. She said I was clinically still very unwell… And I was.

She couldn’t use any of her midwifery stuff to treat me at any point (other than using the blood pressure cuff to see what was going on there in the early stages of my dizziness) because she’s super professional and didn’t want to break any rules, but she’d had all the lectures on how to treat the very early stages of this issue when I was a tiny kid, and acted as a parent instead of a health professional (actually she kind of merged the knowledge she’d gained through each role). Once she got over her frustration, she came home from work and wasn’t angry with me at all (only briefly frustrated every now and again, but out of concern I think). We weren’t hugging or laughing or anything like that, but neither of us was frustrated with the other and that was so nice, to not be tense. She kept asking what would have happened if various things had occurred differently, talking about what could and should have happened, saying how unbelievable it was that I’d managed to stop everything enough to stay on the planet. She knew I needed to be in hospital, but she also knew there was no point in arguing with me – for a year I’ve done this alone, the health stuff, and I’ve learned to carry the weight. When I realised things were bad, I was worried at first that she’d just get angry and swear and say she couldn’t do it any more (as has happened when my health has broken her before) but in the early hours of the morning, despite her frustration, she was there. She wasn’t angry at me immediately, until she realised how serious the situation was, and the stress needed a way to be let out of her.

A lot of people didn’t understand my decision not to go to hospital. One of my best friends from uni knew how serious the situation was and knew I should be in hospital, and just couldn’t understand why I wouldn’t go. She asked me to think of her. She told me I was so brave and I had to be brave just one more time. It wasn’t about bravery, though. It was about breaking down or staying whole. My fellow third wheel understood. He knew I’d make the call that was best for me, and although he’d sat in an intensive care unit and seen the state I was in with bloods like those I had yesterday, he understood my reasons and supported my decision.

I tried to explain as best I could (just like I’m trying and failing to do now), but all even my doctors cared about was keeping a pulse in my arteries. None of them care about the state I would be in physically or emotionally, or the quality of life I might have. Nobody other than my fellow third wheel understood what going to hospital would do to me – I hit a wall, a mental block, a warped sort of panic at the thought of going to a hospital. I was filled with a quiet dread and a sinking feeling, and honestly thought I would have a mental breakdown if I had to go through it all again. I wanted to manage it myself, I wanted to at least try. I knew there’d be an end to the situation one way or another, and I wasn’t prepared to die emotionally to stay alive physically. There wasn’t a lot left to lose.

I thought long and hard about my decision and tried to talk myself around but I was reacting to a primative instinct, a part of me I could not control that overrode everything else. Nobody understood that. They acted like I was killing myself, like I was going to die if I didn’t go to hospital (to be fair this is a reasonable concern). I explained that the situation I was in kills within a few hours and that if I wasn’t doing something right I should have been dead a couple of hours before. I assured them over and over but they could use search engines and my uni friend does Biomed too and they both knew how serious the situation was, how unwell I was. They both, initially, asked (one of them begged and pleaded for quite a while) for me to go to hospital, to call an ambulance.

“What would you say if it was the other way round and it was me? Honestly.” My uni friend messaged me. I wanted to say that if I understood what she was about to have to face, the hell she was about to go through, the emotional state she was in and the level to which she was broken and unable to cope, then I’d support her and risk letting her go because I’d feel it was selfish to ask her to stay alive and suffering for my sake (not that I wanted to die. I mean, I don’t think I was even remotely bothered that such an outcome may be possible, because my emotional state in light of the health hell I’m going to have to face has left me a mess at the moment. But I wasn’t not going to hospital because I didn’t care. I did care, or I wouldn’t have actually tried so damn hard to save my own butt). But then, after playing the uni parent card and tugging at my guilt (before telling me to message one of them so they could talk some sense into me – she really did try every tactic possible), she finally told me to do whatever I needed to for myself, not for anyone else. I loved her for that. And I knew that she got it then. I was doing what I needed to do for myself overall. I was protecting my mind. I haven’t explained it right even here – it wasn’t me being awkward or stubborn, it wasn’t a conscious decision, I genuinely couldn’t go. I can’t explain it.

“I still don’t think we’ve stopped this.” My mum said before I went to bed. The level of nastiness in my blood had dropped to unsafe but no longer medical emergency levels, “Your pH is clearly still low, look at you.” Seeing as I couldn’t remove my eyes this was actually impossible, but I got the point. My body was in crisis still and it refused to stop letting me know.

One of my best friends from uni, who shall from now on be known as Uni Pal (even though we both refer to each other as banana pals – because I am a banana a.k.a idiot, and we both have our moments) carried on messaging me long after she caved and accepted that I was doing what I had to.  She’s the one that wants to train to run a marathon with me, and is convinced her heart will probably explode long before mine because she can’t run at all. We started talking about me going back to London, and she got super excited with me and started talking about all of her suggestions – things we are definitely going to make a reality – pub nights every Friday and runs every Sunday morning plus library visits (we plan to motivate each other, because I did way way way too much work earlier in the year and was too ill to do much at all; while she feels she didn’t do enough, and both of us want to handle our second year a little better). Uni Pal is dependable, persistent, stubbornly loyal… the kind of friend I don’t deserve at all but am beyond lucky and honoured to have. I cannot wait to go back to uni. My mum seems to think I will be going back to hospital instead though… NOPE. I am not ready for any sort of admission at all.

She’s also still convinced this morning that my pH is still low. I feel much better and can now walk around, but my heart is STRESSED OUT. My heart rate has been above 130bpm for over 24 hours now. It never dips below 100, but when I’m in bed, laid down and completely relaxed, it usually drops down to about 110, and stays there even when I’m sleeping… So, complete with weird feelings and low blood pressure, indicates to me that my heart is being a grump.

I went next door to return their door key (and attempt to return the money they dropped round yesterday to thank me for looking after their animals) and was offered two more jobs animal sitting, but she wanted me to have a social life, so she asked me to confirm once I was at uni and knew I didn’t have plans. I bumped into our very close family friends’ oldest son (he’s in his late 30s) who was working on their patio. He’s like a big brother to me, and was going to drive me (and his girlfriend and two little nieces, who came away with us before) to Holland to join both of our families on the holiday I was too unwell to go on. He told me I didn’t look very unwell and was the second person to tell me that they had been reliably informed by the guy I call Dad, that it was my own fault I was so unwell. I made him a cup of tea (in my neighbour’s house, yes, I know… but it is like my second home now) and he got over the “banter” that I hadn’t found funny, suddenly acting a little more… his age. If I had been in an emotional state to care about anything, his insensitive comments would have made me feel so ashamed and full of self hatred that I probably would have shut myself away from everyone for a few hours. Instead I went back inside to my neighbour while she was on the phone to various people, and hugged the puppy a lot. He jumped on my lap and went crazy. I was buried under a mass of overexcited cocker spaniel, which seemed determined to show his love by licking my face no matter how I tried to stop him.  Then my mum got home and found out I wasn’t in, so phoned me. She decided I would still have a pH that wasn’t quite normal, and told me to take it easy, being all,

“With everything your body went through yesterday I can’t believe you’d even think of pushing it.” So I caved. I sat. I stayed. I inserted a new continuous glucose monitor sensor into my arm, and the little contraption that fires the needle into my arm malfunctioned. When the sensor finally broke free and the needle was in my arm, it turned out there was no adhesive (these things usually stick fast and even after 2 weeks are IMPOSSIBLE to remove) so it just fell out in a blood covered mess. This was kind of a relief, because it had hit a nerve so I had pain tracking all the way down my arm, but still, those things cost £60 a go and aren’t covered by the NHS so… Not good.

The big brother that isn’t my big brother appeared on our doorstep a while ago, let himself in, and started making himself a cup of tea. My dog was so overexcited to see him, in a way that he never is for me. This would have made me feel a little rubbish about myself but thankfully I still don’t care about much. He sat with me for the whole of his lunch break (well, he spent a lot of time with the dog, who was the only reason he’s come round in the first place) and then, as he was leaving, he asked why I hadn’t walked the dog yet. I said I’d been really unwell yesterday and he paused, looked at me, and said, “That sounds like a load of bulls**t to me.” He’s only ever seen me unwell, most people have never seen me with good bloods. On a day to day basis I look the same, so to be fair, I couldn’t blame him. But I hate that I have to justify being unwell. I hate that paleness and grey sunken eyes and a look that on anyone else would be alarming and indicate that they were significantly unwell… is just what people are used to seeing on me. If he’d seen me yesterday, he wouldn’t have said that. If he could feel how I feel or live a day in my life, he wouldn’t have said that. But he can’t see. He can’t feel what I feel. My body malfunctions silently, below the surface, and I’m not like those people that sit and go on and on about how awful they feel (ok so maybe I do her but this is my space to just let some stuff out).

ANYWAY. Sorry about this junk heap of a post.

Tomorrow is the launch of my goal setting running sponsored ting. I definitely want to start it, but almost chickened out of starting a second blog and a platform through which to get sponsored because I’m still not sure anybody will be willing to donate 50p or £1 to what will seem such a pathetic effort. She seemed pretty sure that it is still a good idea, and talked me back round to the whole thing. So… I guess tomorrow I will be posting a link to another blog.

No way but through.

Onwards and upwards… just onwards, I guess.

Running Before I Can Walk

If I can run, then I can do anything… My brain suddenly (and unhelpfully) spat this thought out the other evening, and this moment of realisation hit me in spite of the cold hard truth that had until that moment been keeping me grounded.

If I can run, then I can join the university running and athletics society, I can finally join an athletics club, OH MY GOODNESS I can even play football again! I can sail, I can swim, I can take the stairs in one go, I can go for walks alone, there will be no physical limitations stopping me doing all of the things I dreamed of, all the things I used to do…

Off I went, researching park runs and running clubs near my uni (I decided my birthday present to myself will be completing a park run in the month of my birthday), and downloading running apps. In the back of my mind was another thought, a more logical (and realistic) thought that went something like this: I can’t even walk that far yet, and I was told not to expect to be able to run like I used to – no joining clubs or competing or anything, why on earth am I acting like this is ever going to be a possibility? Naturally, I ignored this thought and started looking into how I could represent the university. Before I knew it I’d decided that I’m joining the university athletics and running soc. in January. This isn’t going to happen. It is completely unrealistic, but my brain was off – running before my body can deal with walking. And I let it run away with itself, because it is about to lose everything for a little bit. It is about to go through things that will make it question its decision to hold on, to try running and avoid ending it all, and so for at least a few minutes (ok it was way longer than that) I let it cling to hopeless hoping.

I was told by my cardiologist not to swim, on account of the risk that my heart may have a tantrum while I’m in the pool and lead me to lose consciousness in the water and drown (something that may happen when I run, but shouldn’t involve the possibility of drowning in that instance). And yet… I started looking into joining the university swim team. The trials are in October, and there is a social right after. I miss the social interaction that comes with sport. I loved the thought of meeting people and making new friends – the friends I made through sport were some of the best friends I’ve ever had. I miss that coach-coachee bond, the encouragement, the motivation, the belief… And there’s a casual squad so… Oh who am I kidding I’m not aiming for the lowest group – which is exactly my problem. The BUCS swimming championships take place in November. I was sensible enough to realise that I’d never be ready to compete then. But I kept looking. Three are friendly galas between the London universities from December onwards, and the long course individual championships are in February. These are also not achievable goals, but in my brain I was capable of far more than I probably will ever be, and so these events went down in my notebook.

I went to sleep after all of this feeling a little light headed, but ignored it. I woke up in no fit state to swim, as I had been intending to do while my family were all out and would have no idea that I’d decided to be completely stupid and attempt swimming again. In my mind I was so sure it would be alright, until I woke up feeling lousy. So I held off. And I clung to the thought of running again.

“Running… With your heart problems?” My little brother said skeptically when he learned of my intentions to run again, “Well what if you pass out in the middle of wherever?”Good point. Fairly likely to happen. I promised not to run alone to calm everyone down about this possibility, but I will probably run alone because I’m embarrassed at my complete inability to run at all and that doesn’t need to be witnessed.

And then last night I was up all night with bad kidney pain and a dull crushing pain in the centre of my chest that crept out to my shoulder and into my jaw as the night went on. Neither of these things worried me or phased me at all, but I would have appreciated some sleep. I went out shopping today and bought a load of running gear in an outlet store.

“You’re never going to run are you?” My mum said, more of a statement than a question, stupidly fuelling the fire inside of me – the determination to prove everyone wrong yet again. My knee was attempting to dislocate itself as I walked. My kidney was causing me a great deal of discomfort. And then, around 2pm, I was walking around a shop and this wave of dizziness overwhelmed me. I could hardly stand, but I did. It didn’t worry me, I knew I could handle it. I stumbled a little as I walked, unable to go in a straight line, and as the dizziness intensified my vision would fade out to nothing extremely frequently. My mum got worried that I was going to pass out, she said I looked rough. I made it to the car, and we aborted the shopping trip (after a bratwurst hot dog, because she thought food might help. It didn’t – combined with the dizziness it made me want to throw up). Slowly I figured out that the dizziness got worse when my heart felt funny – not in an abnormal rhythm (ok it was skipping the occasional beat but everybody’s heart does that), it just felt weird, and my rate was highly variable.

And what had caused it? Walking. The effort of walking a tiny bit around some shops, of holding some shopping bags. It took its toll and I paid the price for hours. Even now, almost ten hours later, after sleeping for hours, I am incredibly dizzy and I don’t feel right at all. And I realise now how tough running is going to be. I realise what I’m up against, how impossible my aim is. My body hasn’t changed at all. It is the same body that three weeks ago made running an impossibility and held any possibility of it so far in the future that I never dreamed I’d run again. It is the same body that nearly died too many times this summer alone. It is the same incapable, weak, unhealthy, malfunctioning body that bails on me and endangers my life frequently. I am not different, I simply have a hopeless, “unachievable” “impossible” (in the words of others) ambition that I have pinned my entire life on. It is the same body that can barely deal with walking right now, that three months ago sat in a wheelchair… But that isn’t going to stop me trying.

I carried on through the dizziness, I stumbled into things and I pushed my heart until eventually I passed out in my bedroom (note to self – the stairs were a bit too much). I was not giving in, I was not backing down, and I was not scared or worried at all or bothered in the slightest. The dizziness backed off a little, and I sat and felt my pulse, concluding that the weird feeling in Skippy (my heart) was nothing to worry about, and I… Started a second blog (which currently has no posts but that I am slowly building into a viewer-worthy thing). A blog to follow my attempts to run again, so that anyone who sponsors me can see how I’m getting along. I want to use it as a platform to inspire others to get into running, but more than that… I want to use it as a platform to inspire other chronically ill people to aim for things that would be difficult to achieve in one go – when dealing with health things have to be taken slowly, one step at a time, and failing to reach the end goal in a reasonable or even normal time frame can be extremely disheartening, so I hope to build a little online community or something, where people are inspired to aim for things that time or health or a lack of motivation (etc. etc.) have stopped them from achieving, one small, realistic goal at a time.

I’m worried nobody is going to sponsor me, I’m worried this whole idea is going to crash and burn, but I’m so passionate about passing on the benefit of this process, this hope… That I’m willing to look a fool.

“Just take it easy.” My mum said slowly, in a reluctant and patronising tone, when she failed to talk me out of attempting to run again. Nobody thinks that I can do this, which is exactly why I am going to try more than is sensible in order to prove them wrong.

In my mind, I am convinced that someday my body will match the imagined state my brain currently views it in.

I am grounded by logic, but my head is in the clouds.

And as long as that brings positivity into my life, I don’t want to cut it down.

Ok so now my heart is doing weird things in addition to the funny feeling, and in the last minute the dizziness has become beyond ridiculous, which means I’m probably about to pass out so… Bye for now.

I guess the title for this post should have been: In my mind I’m running before I can walk without this happening afterwards. 

If… But… “Go!”

“My life is about to suck balls… So I want to run.” I don’t think I said it quite like that, but whatever I said, my cardiologist said go… He. Said. Go.

Ok, so I am about to talk about an appointment, but this one was a good one, a great one. This one gave me a future to look forward to and a life worth living just a week and a day after another health hiccup and another health team told me that my life is about to become hell. This appointment stuck me back together again and gave me not only something to cling to, but something to stand on. My cardiologist is a legend.

I walk into the room and he asks how I am. I hesitate, unsure how to answer, and tell him that I’m ok. I can’t talk with my mum present and she was pretty stubborn about being anything but present – weird, because we aren’t really getting along right now. She’s hung up on the fact that I’m not happy, and I’m too empty to act any happier than I am already managing to appear. She has no idea what I’m going through… Except she does, and she’s ignoring it.

I sit down, and we start talking. Firstly about university and my exams and all of that stuff, and then about Skippy (my heart). He tells me that nothing has really changed. Thankfully my MRI is the same as last time, which is awesome. But everything has changed. I can walk. I fee like my heart has got a grip now. I point this out. We’re going down a road that I don’t want to go down and then I mention that I decided to try swimming. He stops. Seriously, our conversation stops dead. He asks how it went and I admit that I can only swim one length at a time and nearly passed out multiple times in a swimming pool, and I can’t quite figure out his reaction from the look on his face. He says we’re in the same sort of situation as we have been for a while, and I argue that I’ve been trying more, and that I’m sick of not doing stuff, and that I am not in the same situation as last time I saw him because I could barely walk then and now I’ve tried SWIMMING. We dance around this for a minute, around my change of heart (pun intended) and my reasons for needing exercise back in my life, and at some point somehow my request to do sport again manages to be thrown into the conversation, I don’t remember how or who by. But suddenly we are talking about it.

He pauses a little. But he knows that whether he supports me or not I am going to try stuff. He knows by looking at me that this is more than a want – it is something that I need to do. And after a pause for thought he gently says,

“Go for it. Sure.” And I’m hit by a sucker punch of emotion but this time the emotions are good. The hopelessness crumbles around me and something strong and solid is left in the middle – me.

“But gently. Very gently. You need to try to condition your body first” (I am in a weird sort of situation where in order to complete a couch potato to 5k running plan, I have to actually build my body up to the fitness of a couch potato). “And if you get at all symptomatic, stop. If you black out or you feel like you’re going to black out, don’t push it any further… And come and see me.” I don’t know how I respond to this, but apparently I do, because he continues trying to pull me back down to earth.

“We’ll keep on with the medication to try and control everything” (the medication isn’t holding things very well at all but the new dose is making things much better than they were) “But if your rates become too high or you can’t tolerate something, stop.” This is very likely to happen. It is also very likely to be ignored by me, but I nod when I need to nod and agree to what I need to agree to in order to get him to back me up. “There are places we can go with this.” Hesitation creeps into his voice, and his words become more awkward and carefully chosen, “But like we’ve discussed before, the procedure I’d do is only successful in 50% of cases and there’s a significant risk that it could make everything worse… I’d like to hold off for as long as we can, it really is a last resort.” Pause. Stop. Last time I saw him, this procedure was going to happen. But things have changed. Things have  changed! WE ARE NO LONGER AT THE LAST RESORT. Which is… I mean… DO YOU KNOW HOW AMAZING THAT IS? Let me remind you that in May I was in a coronary care unit with a blood pressure of 50 over 40, that I had fluid on my lungs and in my abdomen and in my ankles and I couldn’t stand without being overwhelmed with the urge to pass out, coughing like nobody’s business, or becoming incredibly breathless. And there were very, very few options. In fact, nobody knew how to fix it, or what to do, because there were complicating factors. And so I was just left like that, left hoping. And we thought things wouldn’t improve. Even I thought I wouldn’t be able to walk around under my own steam again. But I proved life wrong. I pushed. And I made things a lot worse. I passed out a lot. The chest pain has been ridiculous. I’ve gone blue at times… But somehow against the odds, everything just… Got better. Not better, not normal… But workable. I have something to work with. I just need to be very, very careful because my heart is a fragile little thing and he likes to have tantrums.

“If you find that you can’t tolerate activity or you’re starting to black out, come back and see me sooner, and stop trying activity.” (I will admit here that I kept him in the dark about my recent blackouts and collapses upon trying even the gentlest form of physical exertion. What he don’t know can’t stop him supporting me). He asked me right at the beginning whether I’d had any more admissions, and I couldn’t remember, so I said no… Then we realised that yes, since I last saw him I’d nearly died a couple of times. But hey, this health hiccup is not my biggest issue right now, it isn’t the one that has made doctors so desperate that they are willing to put me through hell on earth. So he lets me dream. He lets me get lost in hope and ambition and aims. He lets me talk out loud about what I want to do.

We talk about where I’m going to go with this – with attempts to try “activity” (or as my brain has decided, full on exercise eventually). I think my mum brought up this subject, come to think of it, which is weird, because I didn’t tell her about my plan to run 5k, but even she seems to know that sport is the only thing that can save me right now.

“You can’t just go into exercise. You need to build up to this. Forget your heart, your body isn’t going to like this at first.”

“But I’ll get there.”

“Well you’re not going to run marathons, but yes…” Challenge accepted! my brain instantly thought, I was only aiming for 5-10k by my 21st birthday, but thanks for the idea! I am determined to prove everybody wrong about me. I have been given the green light to go wild.

We talk about swimming and he asks how well my heart tolerated it. I say that I loved it, and I know I can do it if I take it easy. He asks again. I reluctantly admit to the difficulty and Skippy tantrums that it induced.

“Do you like anything else?”  He says, in a way that makes my mum laugh. I am about to say Sailing until he continues, “Preferably something that doesn’t involve water…. I don’t want you to drown.”

“Can I get back in a boat?” I ask anyway. He doesn’t actually answer, but I think he knows I will anyway.

“If things get worse or your heart isn’t tolerating exercise then we’ll go ahead with the procedure. But do see me before our next appointment if that happens. Please.”

Some other conversation happens, he again tells me I’m not going to be able to run a marathon or anything, and then I float out of the room on a bubble of happiness.

I messaged Uni Mum last night and she replied! I instantly was so happy that I nearly cried, and we’ve been having a general chat all day. My nephew got his GCSE results and got what he needed to take the A levels he wanted, but at the same time got lower grades than me overall, which kind of made me feel less pushed out by him in a really weird way. I was the first person he told other than his parents (who obviously found out with him), which also felt kind of awesome. We drove the long way to the hospital because of traffic, so we drove through Eltham and Lee and New Cross, and got to see all the places my granddad used to drive London buses around. And then that. This guy put the whole world back at my feet. There was something to hold, there was hope. Surgery is no longer an urgent or imminent thing, perhaps just an inevitability. But hey, I can wait. I CAN WAIT. How amazing! I didn’t sleep at all last night, but I slept all the way home. Mum and I managed not to have a war until we got in and I, being the evil person that she thinks I am, managed to make her not talk to me and be completely offish (she is still annoyed that I wasn’t happy yesterday… I’m sorry I have emotions, seriously. I can’t help it).

I instantly wanted to tell uni dad, purely because of the amount of times he has had to talk me out of going for a run (when my heart was in a much worse state and I thought that might be a way to end it all)… Also he is a long distance runner and we’ve had many conversations about how awesome running is. But I couldn’t bring myself to burden him. Instead I messaged my fellow third wheel (who has been BEYOND amazing and put up with so many freak outs) to tell him,

My cardiologist says I can try activity (crying face, celebratory stuff, flexed bicep, boat)

He said I will never run a marathon so I’m taking this as a challenge.

He was as excited as I am, replying with – YAAAAAY!! Just give it time but YAAAAAAAAAAY!!

And then his whole “help what lies in my future which uni course do I pick through clearing or do I even go to uni right now because that isn’t what I want yet” crisis was over, because he has found a temporary job, and I am so happy for him that I cannot contain my smile.

I messaged one of my best friends from uni (the one who I met in London and went for a drink in Covent Garden with the other day), saying pretty much the same thing, and ending with a So I’ve decided this is a challenge and I’m running a marathon in 2018. Again, she didn’t tell me I was ridiculous. She knows that my body kicks ass when it shouldn’t and does stuff people are certain that it couldn’t. She knows that the world is full of idiots and that my body (but not me) is a little bit superhuman. So her response was…

HAHA YES GAL!!

Shall we aim for that together? I mean I can’t run for sh*t but why not eh

I typed back exactly what I thought,

YES PAL OMG SO MUCH LOVE FOR YOU

She has decided that out of the two of us she will be the one that has a heart attack… But how awesome is that of her? To aim for something with me, to be there? We already decided we were going to have Friday night drinks every week, and now we’re going to train for a marathon together. It means so, so much to me that she’s willing to jump into this crazy adventure with me.

And Uni Mum is still messaging me, which makes up for the fact that my actual mother currently hates me and started telling me all about their amazing time in Amsterdam earlier (which hurt). I don’t even care that I don’t fit here, and that I am the unwanted member of this family. It doesn’t matter that I can’t re-enrol at university, don’t have a timetable, and am not enrolled in anything because the university haven’t amended the grade for the exam I “failed” or given me results for the two I just sat. I don’t care that everyone is bugging my nephew up and he’s showboating. It doesn’t matter that my sister is posting all these things about our nephew’s GCSE results that she never bothered to do with me. I don’t need to fit here. I never will. I am scum when I’m with this lot, and that’s ok. My friends are beyond awesome. These two have supported me every step of an awful, awful week. And uni mum is talking to me again after a 5 month hiatus.

But more than that. A hiccup is starting to go right. There may be no hope for the hiccup that is about to put me through hell, and it is still posing a very real, significant, unpredictable and inevitable threat to my life. Non-medical people still don’t appreciate how dangerous it is and how serious it is. And we aren’t sure how to stop this ticking time bomb from going off, we just know that it will, and we will have to limit the damage again. But I am not living in fear of it – that stopped over a week ago, before the dread of hell on earth settled in.

And now that I know there is heaven awaiting me in the form of getting back to sport, and being back at uni, and being out of that STUPID wheelchair, I am ready to walk through hell. There is no longer a deliberate blanket of denial through which I am wrestling the reality of the situation in order to suppress any thought about it… Thoughts about it have simply been batted aside by the fact that I can try running. (Ok well that’s my take of the discussion. My mum was all “NO. He said gently, very very gradually, not running!” But damn it, I’m running! And I’m going to buy all new running stuff because yay).

Instead of being told not to exercise etc. a doctor has now decided to support me, taking things carefully and cautiously.

This was all I needed.

This is what I needed.

My cardiologist just gave me a life.