Where is my sugar free happy ending?

Superstitious folks, cover your eyes, as I was diagnosed with Type 1 diabetes on Friday 13^th March 2015, aged sixteen. Prior to this diagnosis, I was unaware that I was suffering with undiagnosed, critical Diabetic Ketoacidosis. Diabetic Ketoacidosis, or DKA, as it is commonly referred to, is the condition that undiagnosed diabetics suffer from. It is caused from a lack of insulin in the body, and your body turns to breaking down your fat stores to keep you going, in replace of the lack of nutrition.

I feel that a NHS style list of symptoms will do little justice to the actual experience of them, as I am sure many diabetics will agree, so allow me a few fancy adjectives. A burning, unquenchable, rabid thirst. Weight plummeting; I lost nearly two and a half stone in two months. Being so, painfully tired, I would weep at the thought of getting up in the morning. Simply walking down the road would send my heart into a flurry of panic, my breath spasmodic and wheezy. Small cuts on the knees took weeks to heal, turning to oozing chasms of pus. Oh, the glamour.  

It is laughable now to think that I blamed these symptoms on the stress of my GCSEs, and mood swings. I feel as women we often find a fault in our hormones to explain illness, and boy did I do just that. Humour me a moment whilst I get my mini violin of sorrow out, but I failed to mention any of these symptoms to my parents or friends for two months. Finally, when I said to my mum, after having drunk three litre bottles of water in the space of twenty minutes, that I “really wasn’t feeling too well”, she replied, in the typical tone of a matriarch; “Well you’re going to school tomorrow Helena”. 

I look on back how insultingly quick my diagnosis was. I was sat, a near emaciated, quivering bag of bones, swathed in pyjamas and embarrassingly not wearing any underwear at all, on a chair in a doctor's surgery. I remember thinking, how long would this take? How long was it until I could have some water? Because this thirst was becoming unbearable. I remember running my hands along my protruding hip bones and ribs, and feeling sated. I remember feeling so very, very exhausted, surprised at the amount of effort it took to even walk into the room. And so, with a quick stab to the finger that's now irritatingly common, it took my doctor less than a minute to tell me I had Type 1 Diabetes. It's funny how the first thing I thought about on being told this was "I'm never going to be able to perform in shows again". So trivial. My hobby, admittedly my passion, was the first thing that came to mind. Then, the tears. The hot, salty streams of tears; and being pressed deep into my Mum's arms.

You may wonder why I described my diagnosis as being "insultingly" quick. I only came to feel insulted by it recently. I do often feel angry about how quickly something that was going to change my life forever came about. How this three-minute cordial conversation on a Friday morning was to, I felt, determine the next chapters of my life.

Immediately, I coped. Coped possibly better than I should of. I rang my boss and told him I couldn't work that night. I rang my Dad and told him the news, told him not to worry, that I would be fine. I rang my friends, described an illness I knew nothing about, told them that I would be fine. I would be fine. That little string of words that acted as my lid on the emotions I would conveniently place on a shelf labelled “Things I will deal with later”.

The next few hours were a blur. I lay in a hospital waiting ward for eight hours whilst various faces whirred past, cold, clammy hands sticking various foreign objects into my veins, as bruises blossomed on my skin like violet bouquets. I felt like this care, this medicine, was going to cure me; that this was temporary. I was calm and laughing as I waited with my Mum, saying "Oh this could only happen to me today", like I'd tripped on the street or dropped a mug.

I’d like to take a moment to thank my best friend and boyfriend, who’s names I need not mention. As they had been one of the first few I rang to break the news, they had come to me without hesitation. I thank you both dearly, for looking after me when I could not look after myself. For wiping my face with a face wipe, and plaiting my hair. For the magazines and for holding my hand, and for helping me conjure up the nickname ‘Nick Clegg’ for my Pancreas, through the idea that “It meant well, but it all just went to shit in the end”. You may think these actions were menial, but I needed them, even though at the time I was unaware of that.  I had been alone for eight hours. My Mum, as supportive as she had been, I’m sure was failing to cope with the idea that her healthy daughter now had a life long health condition, she tried to be strong for me I know, but I could clearly see the fear in her eyes.

Eventually, I returned home. My eyes had ballooned from a combination of lack of sleep and tears, they ended up resembling two thin slits in my face. I was bloated, bruised and sore, but doing what I should have been. I took all of my insulin, and ate my three meals a day. But slowly, my bony frame became soft, plump, with a wobble like the finest of jellies.

I have never had the most positive relationship with my body. Even at the height of DKA, and the lowest of weights, all I could see was fat. Now this new condition was robbing me of my chance to remain thin. This was when the “experiment” started. I decided to experiment with my insulin; taking less and less, until I was taking none at all.

To my perverted joy, the effects were glorious.

I could lose a stone in three days with no insulin, eat what I wanted and remain thin, as measured by the ritual of rubbing my hip bones and ribs, running my hands over my body, alike to a stupor I could only imagine would compare to what heroin addicts find so addictive.

Yet, I suffered the consequences from a lack of insulin in my body. I would wake up most mornings with hideous nausea, and spend the better part of the morning with my head in the toilet, shaking with weakness, the bitter taste of vomit stained on my lips like lip gloss. Any form of energy was void, and my throat was arid continually. As I drank so much, I was up six or seven times a night to use the toilet, so sleep was near impossible. Concentrating at school was extremely difficult. My eyes would blur due to the raised blood sugar levels, making simply reading the set work a challenge. To put this into context, a healthy person’s blood sugar levels should be anywhere between 4 and 9. My levels were 30 +, often so high my meter was unable to read the level itself. I was simply ignoring the fact that long term, this could turn me blind.

I know in my heart that the worst consequence from this slow suicide was the deceit I employed in its concoction.

I lied to my family and friends, telling them I was in complete control, that “Yes of course I’m taking my insulin” and “Yes my sugar levels are healthy”. For that, I am deeply ashamed. All they wanted for me was my health, and I lied and lied and lied all for the selfish need to be thin. If you are reading this, I am truly, very sorry.

Eventually, as these things often do, it all came crashing down around me.

On yet another day of crippling nausea, I finally admitted to my Mum I was taking no insulin. After she had cradled me, yelled at me, and everything inbetween, she wept. All I could hear were her choked sobs. I think the thought of a child in a diabetic coma was enough to scare any parent. We concluded that I needed serious help, and I spent several days in the hospital, plugged into a variety of machines.

It later came to pass, after several sessions with a psychologist, (who was reluctant to label me with a condition for fear of further inspiring it) that I was suffering from Diabulimia. Diabulimia, although not a medically recognised condition as of yet, is defined as an eating disorder in which people with Type 1 diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss. And numbers are on the rise.

I make no shame of the fact that I am a militant perfectionist. If whatever I am doing is not as near to perfect as I can get it, it is simply not worth doing. This is emulated in my life with Diabulimia. I feigned perfection for so long that no one would think me a seriously unwell individual.

Yet, after some time, I began to question the need for such pain, all for a size six dress size.

Slowly, I began reintroducing insulin into my life. By God, it was not easy. I had become so accustomed to soft, velvety skin, that the pin cushion I had become from the injections was hideous. The weight gain was psychologically crippling. I took days and days off school for the simple fact I refused for people to see my bloated frame. My social life effectively came to a halt, with me sobbing on my Mum’s lap like a wailing walrus cub at the thought of going to a party.

Time passed. I still struggle, admittedly. My obsessive nature will never go away. I will always yearn for my protruding ribs. But there comes a point where I can no longer let my illness control my life.

You never imagine yourself to have a label. Whether it be Diabetic, or Diabullimic, it is frightening in the worst of ways. I knew then, and know now that Diabetes was not the worst thing that could have happened to me, but that does not mean that I do not still wish for it to magically disappear.

It will take some time before I am fully in control of this illness. Before I can manage to inject insulin four times a day. I am not, by any means, cured of the paralysis caused by Diabulimia.

It is a bit of a shame that I cannot finish this with a happy sugar-free ending. But every day, I am trying my best.

And right now, that’s good enough for me.