Letting Loose, Coming Home, Shaking Off The Shackles Of My Health Hiccups

The Olympics are a rough deal to watch when you are incapable of a human achievement, let alone a superhuman one. I told myself I wouldn’t post about why, I told myself I wouldn’t do the whole inevitable Olympic blog post, and yet here it is. Because I’ve given up trying to force myself into the box of my limitations and my capabilities, and I sort of stepped back after my last exam, as I walked out of that exam room, and mentally said to my thoughts, and to my sport hungry mind,

Go on then. Let loose. Go home. Chase smiles.

Because since the Olympic coverage has started, suppressing that part of me, and holding that back, has been difficult.

Last time the Olympics were on, I didn’t watch much of the sport. I was in hospital. I had spent four years looking forward to a home Olympics, and when they finally arrived I was in hospital going through a pretty rough time. I stopped caring about everything. The Olympics that year became a background noise to the death of who I was; national success running parallel to personal losses and struggles and losing everything I ever had to my health. I held an Olympic torch, there were newspaper clippings of Olympians I had looked up to for years on the walls of my hospital room… But there was no magic like there had been when the Beijing Olympics were on a TV screen in front of my 12 year old self. The nurses and I piled into an empty side room and we watched the opening ceremony while we ate takeaway and laughed and had a mini party, but I felt dead inside. It was the lowest time of my life. I had never wanted everything to end so badly.

I thought the Olympics were dead to me after that, I thought they would forever remind me of the things I still have flashbacks to, the things that changed who I am irreversibly. And then I turned on the TV to the first events of the Rio Olympics and 12 year old me came bursting onto the scene out of nowhere, hungry for sport, addicted to the Olympic coverage, smiling and shouting at the screen, punching the air when people won… Determined to get up and do something all of a sudden, inspired not only by the athletes, but by the ex-athletes who are commentators on the BBC this year – people I grew up idolising – Dame Rebecca Adlington, and someone who was used as an example to me when I was just a kid and was worried that my health might hold me back – Sir Steve Redgrave.

It’s often difficult for me to accept the severity of some of the situations I end up in. I deliberately switch off this knowledge and forget to turn it back on because it allows me to breathe, and sleep and just… be. There’s stuff that it is obvious to acknowledge as a serious hiccup. But I overlook the one thing that society seems to also think is relatively harmless. Since I was a kid I never thought diabetes was anything to worry too much about. Injections and blood tests were just normal to me, and I knew diabetes could kill, I just never made the link that it could ever kill me. And then it nearly did. Complicated by other extremely complex health factors and easily upset by other health hiccups, it nearly took my life many more times, throwing me into emergencies which needed only hours (and sometimes not even that) to take a life. And other health hiccups roared alongside it. Other stuff was putting me in intensive care units and hospital wards. And every heart hiccup, every infection, every teeny tiny extra physical stress my body was put under, every hormonal change… Would massively upset things in a way that, if my pancreas would actually fully function, I would never have experienced. My diabetes would start to endanger my life alongside these issues, massively complicating them or sometimes putting my life at greater risk than the things that put me in hospital in the first place. Either way, in combination, little things had a whole new way to make me very sick, and major health hiccups became even more major. I never really got to a stage where I was scared of that. But it started to make me appreciate the severity of that particular situation, of something I never remember living without, something I was telling people I had before I was even old enough to understand what it was.

I realised that the ridiculously dramatic people who said that diabetes ruled their life and they were scared they were going to die, and made huge great deals about their messed up pancreases… Maybe had a teeny tiny slight point. I still thought some of that stuff can be a bit over the top and hyperbolised, but I realised that “the ‘betes” could kill, and wreck lives. I started to see an increasing number of articles about children who had been killed or had severe brain damage as a result of DKA (diabetic ketoacidosis). I met people in hospital who had lost feet and legs to the condition. My neurologist, upon noting that I have no reflexes, explained that diabetes commonly affects the nervous system, causing a loss of sensation in the hands, arms, feet and lower legs, and can cause the autonomic nervous system (which controls breathing, heart rate… Everything you don’t consciously think about) to fail. I’d had damage to the back of my retinas due to diabetes and I knew it was the leading cause of blindness in adults. It is also a common cause of kidney failure and arterial disease… “The ‘betes” was not some quirk that made me who I am. It wasn’t normal life with a few injections thrown in. It was something I had massively underestimated. It was something that, in my opinion, had not changed my life in any negative way since diagnosis (even though it had at times put me in hospital for weeks and weeks, and left me in the ICU a few times) but it was something that had an alarming potential to do so.

As a kid I hadn’t understood that. By the time I was old enough to hear those things, they hadn’t happened to me and it was easy to assume they never would. And then I was twelve, and it was the first time they saw background changes to my retina (background retinopathy) and my parents didn’t think I was bothered, but I sat in the car trying not to cry and I wanted to rip out my eyes. But type 1 diabetes was still not something I worried about. And then it got out of control. This year it was one of the front-runners in the race to try and take my life. Sometimes it was top, sometimes it was no bother at all, sometimes it would sneak up on whatever (health hiccup/ emergency/ surgery/ treatment) had put me in hospital and try to steal the gold medal. It made every fight harder. And it went from being my friend to being my enemy. Respect your diabetes and it will respect you, we’d always been told. And I did, I suddenly respected it more than ever, because it was threatening my life. And there were times when that alone, this thing I’d lived with since I was a toddler, this ting I’d hidden from embarrassment but never felt was dangerous, this thing that people think means you can’t eat sweets or were fat… Made me wonder how on earth I would manage. There were times when it made doctors ask the same.

(Obesity is associated with, but not the cause of, type 2 diabetes, which is a completely different condition to type 1 diabetes. Type 1 commonly occurs in younger people and involves the body destroying the cells of the pancreas which produce insulin – it cannot be controlled with diet alone, as without injections of replacement insulin the body cannot get glucose into cells to be converted to energy, and death results. Type 2 involves an insufficient production of insulin to meet demand, or an adequate production of insulin but an insufficient response from cells – it can be controlled by diet alone in some cases, most commonly with a combination of diet and pills which make the cells less resistant to insulin, and sometimes with injections in order to top up insulin levels to those that the body requires. Just to clear that one up).

So now I want to mention Sir Steve Redgrave again. All my life I had been active and sporty, which involves much tighter monitoring of diabetes because physical activity and adrenaline majorly interfere with things. But anyway, all my life I had been sporty, and sport had got me through. And I remember being told frequently that the most successful Olympian in British history (now third most, after Sir Chris Hoy and Sir Bradley Wiggins) had diabetes. Three years before winning his fifth Olympic gold medal, he was diagnosed with type 2 diabetes. Apparently he initially managed it with dietary changes, but obviously sport requires a lot of carbohydrate and sugar for energy, and he moved onto injections (this is what I was told, I don’t know if it is true). Here was this guy, this national hero, doing 8-10 injections a day, and he’d kicked Olympian butt just as well as he had before his diagnosis.

I was painfully shy about my diabetes, I still hide it. And when my friends would cringe and scream and run when I did injections in front of them in the way that people do at the age we were, the knowledge that a sportsperson had to do the same thing took the sting out of my embarrassment. Because I looked up to Sir Steve Redgrave (at that stage an Olympic legend rather than a competing Olympian) and in my child’s eyes he made me believe that diabetes was a super power – and I felt secretly special with the superhero costume of its presence beneath my school shirt. My health hiccups do kind of feel like that sometimes, like superhero costumes that I hide beneath my outward appearance – they’ve forced me to find a strength in myself that I never otherwise would have had reason to use, and nobody has any idea that they are there sometimes, or the complications they throw into my lifer (well now I have an idea for an entire different post).

Recently diabetes was not a superpower, it was something I wanted to run from, something that was ruining me. Something that was becoming too complex to manage. I stopped feeling like I was wearing superhero costumes and began to feel like I was wearing shackles. And then I started swimming. And then I finished my final exam yesterday (an hour before the exam my revision efforts totalled at having read briefly through three out of 22 lectures while worrying about how little motivation I had to study. I then mild-panic revised outside of the exam room) and walked into the place of my dreams – my university campus – and I let my mind race off to thoughts of sport, because there was nothing else to distract my attention from that any more, no commitment to trump it, nothing to lose.

And when I turned on the TV and saw Steve  Redgrave stood there with a microphone, I remembered what he had achieved with a couple of health hiccups of his own, on of which I could relate to, and just like when I was a kid, I felt a little empowered. I was sat in the living room of Aunty Cousin’s house (I am now living with them for the next week or more while my family are on holiday and my health demands that I do not leave the country), and I sat and filled my notebook with random sport junk. Running stuff and swimming stuff and times and old warm up sets and just sport sport sport. I let my mind run. And the Olympics was the background to that, it was the driving force of that fresh ambition, fresh determination not to break a world  record or to even compete gain, but to be able to do what I used to, to be able to do sport without ending up in a heap on the floor.

And my mind ran home. Because home isn’t a place, it is a feeling, a mind-set. I dove into thoughts of doing whatever sport I am capable of, wallowed in the pool of that nostalgia. I am still paying the price for my swim the other day, it left me in bad shape and wheezing for an entire day afterwards. But I feel like I am home in so many more ways than that. Aunty Cousin and Uncle(her husband) treat me like I live here,, more than that – like I belong here. I feel welcome and accepted and not a bother at all. They talk to me like an adult and we end up in hysterics. Uncle(her husband) talks to his kids normally and he talks to me normally and we chat away and end up laughing and I’ve never had that with my dad, the man I call dad shouts and snaps and belittles me – he sulks and slams and stomps and makes me feel like I am the worst human on the planet. I’m not used to a dad figure treating me so nicely, and I found it so weird I commented about it to my fellow third wheel, who is super excited about meeting me at Canon Street station on Monday so I can take him wandering around London. He said that isn’t weird, it is how normal fathers behave. Whatever it is, it’s so bizarre to me that I almost recoil in wary surprise each time he’s so normal with me. Their dog is obsessed with me (he’s a black cocker-poo, which is a cocker spaniel crossed with a poodle) and he is adorable. I get along really well with their two daughters who are (just)14 and (almost) 10. Today the 14 year old and I (who message each other very often anyway, a) stood talking and laughing for ages (and I mean properly laughing to the point that neither of us could stand). She is so mature, and yet only 1 month older than my little brother. We walked to the high street together, a short way, and she commented on how thin I was, and how last year when we went on holiday I was really, really skinny. We strolled along and chatted and laughed and… I just feel like I belong with these guys. They make me feel like it is ok to be me, like I have nothing to be ashamed of, like I am worth being around. They haven’t moaned at me once. The only annoying thing is that nobody here will accept the money I am trying to give them to thank them, so I’m going to have to change tactic and buy them all something. I am so astounded at the way they are treating me that I just keep thanking them. I expected them to be as bothered by me as my family is, but they don’t treat me like I’m still 13 as my mum does (when she doesn’t seem to hate/ resent everything I do/ am/ represent), and they are almost making me feel like I’m no bother at all by completely counter-acting the thoughts in my mind that they don’t want me here. They finished decorating the second attic room just so I could sleep in it, and I treat this house like I live here because I feel that comfortable.

I am so happy to be here. It is such a relief and so… Opposite to being with my family. I look forward to being here for at least the next week (then I am going back to my family’s home and my fellow third wheel is coming to stay for a few days). I didn’t expect them to want me around due to my health. I’m really, really not well at the minute. I need to be in a hospital but I’m holding on and everything is still slipping. It is scary. If that exam hadn’t been taking place I would have and should have gone to a hospital for an emergency admission. For now I intend to hold on, I don’t want to worry these guys; Aunty Cousin has only just got back from taking me to get some local anaesthetic to numb the pain from my broken tooth (the temporary filling decided tonight was a fantastic time to fall out). It’s so awesome here. I’m in a better place than I have been for a while, and I didn’t expect that, but I’m very glad of the break.

I am no longer coming home to myself – I let loose, I let my mind wander to places I thought it would hurt to let it go… I came home. I am home. I feel like me again.

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