What’s it like to go from being being unrestrained, unrestricted, wild and ME to being told I have a chronic incurable illness at 28? Kind of how George Foreman felt at the Rumble in the Jungle I imagine.
As per most things with me my diagnosis wasn’t ‘normal’. In the process of leaving one boat and joining another the owners of the new boat asked if I would go for a routine medical. I remember the morning, flicking through the leaflets in the waiting room impatiently waiting to be seen, thinking about lunch with my friends after. In the doctors room:blood pressure fine, eyes fine, urine test…not fine. It was pretty sugary…infact really fucking sugary. Well what does that mean? Too much rose last night? Urine infection? Looking at me awkwardly the doctor said “I’ve never seen levels this high in someone who wasn’t diabetic”. And there it was for the first time. That word. Diabetic.
I had zero experience of diabetes before that moment. They were just the poor sods who had to inject themselves with something all the time right? Something to do with sugar. But of course the one thing everybody knows went off in my head like a klaxon.. this was bad. This was really bad. The next few days were a blur of hospital referrals, not being able to eat and what felt like pints and pints of blood being taken. A brief ray of hope appeared in that very unusually I’d had none of the usual symptoms – extreme thirst, having to pee all the time, foggy vision and weight loss had not reared their ugly heads in my life at all. That hope was irrevocably smashed when two days later the final verdict came in. I was a Type 1 Diabetic. Could I go straight downstairs to start treatment immediately.
My head was spinning, and I had that thing that others often report when experiencing a big shock. It was all very surreal as if it was a dream. I vaguely remember some bint with a big saggy bottom lip telling me that today would be my last cigarette (ha!) and wanting to pull that lip and punch her in the face until there was nothing left. I remember having another blood test and the nurse being like ‘oh your veins are all bruised’ I told her I was diabetic, she looked at me pityingly and told me how sorry she was. I remember my first meeting with my diabetic nurse Kate, whose job it is to keep me alive, who asked me questions with her head cocked to one side scrutinizing me just a bit too carefully as I replied. She gave me boxes and boxes of all the different vials and gadgets that will hopfully stop me being very ill or even dying – I remember thinking there’s no way this is all going to fit in my handbag. She walked me through doing the first injection in my side. I remember thinking, ouch.
When I got home of course the Googling began. I have Type 1 Diabetes, that is very different from Type 2, commonly if sometimes mistakenly associated with those who have had a lifetime of overindulgence. With Type 1, it’s entirely unrelated to lifestyle choices and entirely down to my immune system suddenly deciding that my pancreas is the bad guy. In a nut shell, there is a tiny part of your pancreas that makes dudes called Beta cells which in turn produce the hormone Insulin. There is always glucose (sugar) floating around your blood stream, obviously loads more after you eat and your body breaks your food down. I like to imagine Insulin as guys on horses who are released into the blood stream perfectly as and when needed by HQ Pancreas. They then go up, grab the Glucose and shove it into the places it’s supposed to be, ie your muscles where it is used as energy. For unknown reasons (high doses of stress, and some environmental factors have been suggested) my immune system one day started to release the big guns that normally protect us from the bad stuff- I like to think of them as angry T-Rex’s – against my little Insulin cavalry. It’s a slaughter and they are dying, shortly there will be none left at all.
This genocide has devastating effects on the body. It is the leading cause of blindness in the UK, as the sugar that doesn’t get moved starts to coat the tiny vessels behind the eyes causing retinopathy. Last year there was 135 amputations in the UK due to Diabetes because of extra sugar causing nerve damage and foot ulcers. It stops wounds healing properly. I’m 4 times more likely to have a heart attack, stroke or kidney failure. Statistics say I will die 12 years before I would of done. The list goes on and on. Anything that comes into contact with sugary blood (so that’s everything) gets slowly munched. In the short term untreated sugary blood will send you into something called DKA. This is where the body, in its frantic search for the energy it desperately needs, will release acid into the blood which will break down body fat to turn into energy. This will leave you with your skin and bones but not too much else and will eventually kill you, when you go into DKA the acid makes your breath smell like pear drops. I’m not ashamed to say that that night at 28 years old I slept in the same bed as my mum.
The thing with Diabetes is that it’s a creeper, unlike other illnesses these horrid complications can take years to materialise. Also unlike other illnesses, there is not one big battle to be fought where you either come out alive or not. Its a slow dogged fight, that must be fought every single day. It will never end, I will never get better – I will be chronically and incurably ill until the day I die. That’s a scary pill to swallow.
So, what does my life look like now? Much the same as it was before in many ways, and in many ways completely different. This disease is the ultimate insult to my freedom and really everything I am at my core. And I’ve been down the rabbit hole with it, looking bitterly at people going about their lives and thinking they just want to sit behind a desk all day – why can’t they have it, why me, why why (thoughts I look back on shamefacedly now)… I’ve drunk myself into a stupor night after night and ended up sitting in the dark sobbing onto my best friend. I’ve lashed out at and scared those closest to me. I’ve wanted to give up, I’ve been furious, devastated and defeated.
And then I sniffled and stared at myself looking like a bedraggled soggy lettuce in the mirror, wiped my face, had a good scrutinise of my body, my hands, feet, hair, tummy which all still look the same – and kind of got over it. The way I’ve decided to go forward with this was not a conscious decision I made one morning, it was more like something that I became aware was the way for me to deal with it – I’ll write more on that in another blog. But I can still see, I still have both my feet, I still have a whole world to play in and more to be grateful for than I have any right to. Its never comfortable to have your own mortality pulled into the spotlight, it’s terrifying, but you can either let that fear take a grip of your heart and soul or you can just get on with your life. If and when bad things happen I will deal with it, until then they are the boogyman and he can stay in his closet.
What it has given me is a heightened understanding of who I am, what I’ve done, what I want to do, and the value of things. Like time, friends, the things that make me happy, the things that don’t. In many ways the human body is so tough, and it other ways life can be jeopardised or taken from it in literally a heart beat. It has shown me the fragility of my own existence in a way only some people can understand. There is no point trying to question it because theres no answers. What you have to do is take what it teaches you and continue to rock and roll. I feel like I am different now to what I was before, but thats more in knowledge than in any other way. I look at my life pre-diabetes and know what was good and bad, and I know what I can do to make sure I waste no more time in my future life doing those things again.
For example: What I regret from my pre-diabetic life. I have one big one. Being a diabetic means big restrictions on your ENG1 – the medical certificate you need to be a yachtie. Its still doable but it means you have to be within coastal waters. And that means I unknowingly spent most of my time on the last ever Atlantic crossing I would be allowed to do crying over a personal heartbreak. At the time my vision was so clouded by the darkness it brought I couldn’t see the beauty all around me. And I will never get that chance again.
What I don’t regret. Every single bucket, jagerbomb, pizza, carbonara and crazy adventure I went on. I was a hedonist and nobody can say I didn’t make the most of it lol. I had a blast and I don’t regret one minute of it.. not even the time that cost me half a front tooth.
What I plan to do now. Even though I have only put this up now I’ve been diabetic for nearly a year… and I’ve spent that time getting to know the things I’ve put above and a whole lot more that I’ll put in another one. I plan to place more stock in every minute, in every sight that my eyes still see, on every sensation my feet still feel, keep sight of the incredible milestones the medical community is making towards a cure, to not be too hard on myself if I’m having a bad day, and most importantly simply to carry on being me, just a little bit sweeter 😉
4 thoughts on “Dying For a Sweet Life.”
This is good Nikki,that first diagnoses was just like a smack in the face out of nowhere. But you’ve battled on and hopefully what you have written might help others who find themselves in the same position. Oh yes – as an aside it was heartbreaking for us aswell, but your strength and tenacity was an inspiration to your old mum and dad ! Love You. X
Ahhh…bless you – well written description of diabetes and your feelings – you seem to be taking it well – and carefully managed…it’s not the end of the world…love your blog – take care xx🇮🇲😘
Thanks Debbie, certainly never a dull moment right! thanks for taking the time to read it 🙂 xx
Reblogged this on Niki In Wanderland.