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.

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