“Do you know what’s worth fighting for
When it’s not worth dying for?” – Green Day, 21 Guns
Today I made a choice. I made several choices in fact that were
probably definitely stupid, all in the space of lunch out with one of my closest friends from sixth form, who I always saw the most of out of school. We both used to go swim training with the same team (different sessions, squads and coaches though), except I got slower and slower and worse and worse – my muscles never got to the point of aching and hurting, because I was so out of breath and choking on water that I hadn’t inhaled but was somehow very much in my lungs, that I couldn’t push myself hard enough to ever make my muscles work enough to ache, and I kept having to sit out. She had shoulder surgery and that ruined her chances at swimming too. And we both talked about how we really, really miss swimming. I miss sport in general. I used to sleep through the night when I did sport; I had focus and purpose and an outlet for all of my emotion, and I felt free. The gaping hole it left in my life when it was torn out of my daily routine all those years back has never been refilled.
There is a private leisure centre fairly near to us that is doing a special membership deal of £44 for a month-long membership. My friend asked if I’d join up with her because she didn’t really want to join alone and I leapt at the chance. Walking hurts at the moment. My muscles are so under-fuelled that lactic acid becomes their best friend almost immediately and it hurts until I stop walking and let the dizziness pass. You’re probably rolling your eyes at me for being an idiot, but just at the thought of being able to swim again my face lit up and I feel happy from the inside out. And here’s the thing… Swimming is a low impact activity, it is easy on the joints and if I can somehow programme myself not to push myself like I instinctively want to when in a pool, it shouldn’t go too wrong. I want to do some gentle exercise, nothing to stress my heart out too much. The pool is about 15-20m. I wanted to swim in the olympic pool near where I live in London, but that pool is 50m long and there’s no way I can even do 20m at the moment. But it is a start. I will figure out how to swim slowly, I will learn self control, and dammit my heart will deal with it. It will just have to. I am sick of listening to it. For so long that stupid ball of muscle has stopped me doing everything I love and I just want to try. I can’t run, which is what I really, really long to do, because that will definitely make me pass out and collapse in a heap of arrhythmia. I can’t sail for the same reasons. But swimming is gentle enough that my heat should be closer to liking it (somehow, if you don’t swim properly and fast, which I’ve no idea how to stop doing because that’s how my brain was programmed to try and swim at all times).
My heart is doing great at the moment and I want to exploit that. I need to do this. I need that back in my life. Gentle, slow swimming will help with everything: the residual back-ache from my running days, my “click” painful joints, my emotional wellbeing and hopefully my physical wellbeing overall. The heart is a muscle, so my brain says that in theory if you don’t use it much, it doesn’t know what to do when you try to use it. And maybe that is why I can’t walk more than 20 metres without feeling like I’ve run a marathon (which is a significant improvement, because it means I can get away with no Winston the wheelchair). I want to try and strengthen my heart (and the rest of me) again with some gentle exercise. I know I will never be the lean, fit twelve year old who ran at least 3km a day and did swim training on top (plus 15 mile bike rides just because I could and… A load of other stuff). When my ascites (which is VERY bad at the moment) clears, I have beyond a flat stomach, it is gross. I am a twig right now, and I want some muscle on that twiggy frame to make me look less unhealthily freakish… Even if I can just persuade my blood to move a little more or my heart to beat a little harder… My entire body will surely thank me? Probably not, I know, but I just need to do this. I need to try. I can’t do this any more unless things change.
I’m sick and tired right now (not in an ungrateful way, in a determined not to sit back and lose who I was sort of way) of standing back and listening about how 15 year olds that people know have just been to the olympic trials in sports I used to participate in. I have gone too long without sport, and that was when depression first hit me. My health took away my ability to participate in physical activity and in doing so my coping mechanism went with it. I want that back. We will have access to the gym and all the fitness classes included. I might try yoga, we think we might enjoy it. I want to run. I want to get on a treadmill and run where nobody will see me if I collapse… But I know that’s about fifty thousand steps too far for Skippy right now.
And then I got a phone call from the hospital, right after I felt like I was getting my life back on track in a very stupid, highly likely to backfire, but totally worth it sort of way. I was the consultant that I saw a few times when I was in hospital. He’s been told by my other consultant in that hospital what was going on yesterday and how rubbish my bloods were, and he was all,
“Hi, it’s Dr (himself) here, how are you doing? Are you ok to talk?”
“Yeah I’m ok to talk, I’m doing ok thanks.”
“Have you had your MRI?”
“Yes thanks, all done.”
“And how have your bloods done since yesterday?” Oh poop. I have no idea, because I ignored the entire issue because I FEEL FINE and hope it would just go away. I thought. But I was terrified that he’s be annoyed at me for not following up with my bloods, and I had a guard up against them for leaving me to deal with everything myself the other day and the last time I was let home after an admission there. I didn’t want to argue about going back to hospital so I… Made up some blood results. Genuinely. I made up numbers that were less than half of yesterday’s readings but still way higher than safe (I had to give him a believable number). As I said it I was like MOUTH WHAT ARE YOU DOING? VOCAL CHORDS ABORT ABORT! but the words fell out of my mouth guiltily. I was that desperate to stay out of hospital. He was instantly satisfied and ended the phone call after I insisted such readings were normal for me and that I wasn’t worried. As he said he was just checking and I knew what I had to do if I got at all symptomatic, a part of me screamed for help, a part of me knew, a part of me wanted to admit that I hadn’t let my blood go through a machine and I had no idea what was going on inside of me and nor did anyone else. But I was panicking. I was scared. I was clinging to the dream of swimming again, because since Norfolk (and long before that actually, but Norfolk was my first time in a pool for months and months, maybe years) I have had this urge to dive into a pool.
WHAT HAVE YOU DONE? WHY DID YOU SAY THAT? FIX THIS, TELL HIM, GET THE HELP YOU IDIOT YOU KNOW YOU SHOULD BE IN A BED TIED TO IVS AND I KNOW YOU WANT TO LIVE AND I KNOW RIGHT NOW YOUR COPING MECHANISM IS A WHOLE NEW LEVEL OF DENIAL AND BLIND HOPE BUT PLEASE STOP. SNAP OUT OF IT. CORRECT HIM, PLEASE. Logic screamed inside of my brain,
“Bye.” fear made me say.
“Goodbye, you know where we are.”
YOU ARE AN IDIOT SELF! YOU ARE ICARUS! WHY ARE YOU FLYING SO CLOSE TO THE SUN, WHAT ARE YOU DOING?!?! Logic screamed again, and something else answered, something else I haven’t met before, and it said…
I need this. Please. It’s worth it. I don’t mind the consequences as long as I get an hour or even ten minutes of the pure happiness that I haven’t felt since the last time I did sport. I can’t go on anymore. It’s getting too much. I am tired of standing back in the prison of myself. Where are the chains? There are no chains? Only flesh and bones and blood and muscle and none of that should be able to hold me back. Let me rule it for one time. Let me try. I need this. I will break without this. I… I want to be me for a bit. Look how happy I am just at the thought.
“I wanna live not just survive” – The Cab, Angel With A Shotgun
And this isn’t even happiness, it is floating. I floated back int my friend’s car and we’d been laughing the whole time and just walking wore me out but I was so elated that I was floating on a cloud of happiness. I started thinking about where my old swimming gear is and my old kit bag from training sessions and all the things we’d try and when we’d start and I WAS SO HAPPY.
And I needed to be happy, because right before my friend picked me up (after I’d just got back from the heart hospital in London where I finally had my MRI this morning) my brain was all yeah we can’t go on holiday body, you know that. You’ve known that for a long time. It left the land of denial for long enough to just accept that was happening. I messaged Aunty Cousin, who I will be staying with, to make arrangements. I really wanted to go on that holiday, but my family really would rather I didn’t and the consultant yesterday freaked out at the suggestion. I already knew. I’d already decided but there was this desperate hope I was clinging to that a miracle may occur. So I bit the bullet. I messaged everyone I needed to message, I informed my mum, and I said I didn’t want to talk about it beyond that. My brain had decided and it didn’t need time to think itself out of that decision. I hurried back into my denial after dealing with it, because the urge to cry never follows me there.
So I made one good call.
How ironic that the good call made me sad and the other two made me feel happy? I need to feel in control. Sport is so important to me that I am at a point of missing it now to the point that I don’t care how stupid or not sensible I have to be, I just need to live again. I need that freedom and control back. I need that focus. I need that release. I need heaven to be back at my feet. So I have no regrets. None. Only pure joy and an uncontrollable excitement. Plus I miss the social aspect of sport, my friend and I both do, and we’re looking forward to seeing each other every morning for early morning swims before we both go back to our separate universities.
I’m mad at myself. And I’m sorry. And I can’t explain my decision right so I’ll have a shot at it again some other time, but no matter what, there will always be…
No way but through.
Until one day, there will be no way but up, right back to where I fell from.
Here’s to the start of the climb. It starts in that pool. And I accept all responsibility. It was time for me to call the shots over what this body will and won’t do instead of these stupid cells and organs for a change!
“When the day has come
But I’ve lost my way around
And the seasons stop and hide beneath the ground
When the sky turns gray
And everything is screaming
I will reach inside
Just to find my heart is beating
You tell me to hold on
Oh you tell me to hold on
But innocence is gone
And what was right is wrong
‘Cause I’m bleeding out
Said if the last thing that I do
Is to bring you down
I’ll bleed out for you
So I bear my skin
And I count my sins
And I close my eyes
And I take it in
And I’m bleeding out
I’m bleeding out for you (for you)” – Imagine Dragons, Bleeding Out (lyrics sourced from Google Play because I could no longer be bothered to type)