1 December 2014

The Carb Conundrum

...as much as I love iced lotus tea, happy hour also exists.
Let's talk carbohydrates… or rather, a lack thereof. For both the diabetic and wider society, 'carb avoidance' can often be viewed as an inevitable consequence of the condition. I know it has been for me, and for dozens of others I have spoken to through blogging alone. 

The comorbidity of diabetes and eating disorders is finally being spotlighted more (see DWED), but still nowhere near enough. Diabetes is a 'food illness'. Compounded with the emotional toll, the exacerbation of perfectionism that blood sugar unpredictability throws… it makes sense.

In wanted to use this post to spotlight this issue, particularly as it has had such a personal impact on me. I hope that far more awareness will be raised in the future, but this cannot happen if there is no existing discussion. Only then can both the media and healthcare profession recognise and subsequently respond to it.


Widening the discussion


When eating disorders and diabetes are discussed, one of the most common terms to crop up is 'diabulima'; for people who may not be familiar with this, it is where a diabetic deliberately restricts insulin, provoking weight loss as glucose cannot be properly processed.

It is a serious issue, and one that does need recognition. The consequent high blood sugar cause horrific side effects, and the risk of Diabetic Ketoacidosis makes it potentially life-threatening. However,  I do think it has created somewhat of a stereotype; that, for a diabetic to have an eating disorder, they must be restricting insulin.

I have never personally struggled with Diabulimia. I have had (and admittedly still have ) an "insulin fear", but never to the point where I gave significantly less insulin than my body needed. Yet, it was because I never exhibited the hyperglaecemia 'red alert' to insulin restriction, that my eating disorder went by unacknowledged for so long. I am not laying blame with anyone; ultimately, my recovery only truly began when I committed to it. However, it shows a lack of awareness, among the medical profession, of wider eating disorders in type one diabetic patients. 

What warning sign was there? The clear absence of our friend Mr Carbohydrate.


The Conundrum


One lovely mum & waitrose trip later...
We need carbohydrates to live. Simple. It is our body's most preferred source of energy, and is integral to survival. Yet for as long as I can remember, carbohydrates for me have been viewed in terms of "good" and "bad", similar to the traffic light system on food packaging. Interestingly enough, carbohydrates never feature there… but they do in the mind of the diabetic. 

From the age of seven, a plate of food is a number, or a simple apple in hand. I vividly recall going to the school dining hall in Year Two - seven years old - and having exactly 10 chips counted out on my plate. No less, but never one more. For years Easter Eggs were never bought, nor chocolate advents. This year, when my mum gave me a beautiful picture advent calendar, I admittedly (and perhaps selfishly) felt a slight twinge of disappointment; for me, having a chocolate advent symbolises both standing up to diabetes, but also to the eating disorder that first reared its ugly head - with help from the former.

Carbs were by no means 'banned'. As a diabetic, I have eaten cake, pizza, pasta, the works. For many years I was far less rigid in my views then I became. But the scripts from my childhood continued to grow and grow, the plot becoming ever-more complex until various other things capitulated it into something altogether more damaging.

The simple crux of the issue is that carbohydrates have to be counted.

Everything adds up, from baked beans to curry sauces, breaded fish and meat. They have a carb count, so they consequently count… Except they don't; at least, according to a 'normal' perception they don't. There is also the niggling issue of "blood sugar guilt". For me, it is still so hard to separate post-meal blood sugar highs from agonising guilt over what I could have eaten to cause this. Being a perfectionist, I do worry over having 'perfect' blood sugar control. It  is something I still wrestle with daily, although am learning to contend with much better than before.

Nearly headless Nick = post-meal high blood sugar


Words Matter


Well there is the media for starters, and misconceptions it creates. The propagation of "evil carbs" and confusing of type 1/ type 2 management has seen me faced all-too-often with the "oh you can't eat x/y" by friends/acquaintances, not to mention the delightful Mail Online...

So let's get this straight… you really think that you can make this judgement call better than me? If so, I doff my clearly hapless cap off to you. Nonetheless, I am slightly sceptical that your AQA Textbook trumps my 13 years living with this illness - no offence.

Photo credit: tumblr.com

The prevalence of diagnosis in childhood, when you are so impressionable, does increase the need for food discussion to be handled with such sensitivity. I recognise what a challenge this presents to healthcare professionals, but a few personal instances were, in my eyes, things that could so easily have been left unsaid, or phrased differently.

Seven-years-old, I see a dietician who pronounces grapes to be "little pockets of glucose". Bananas were the "forbidden fruit" and a multitude of other things given devil horns.


A remark made when I was 14/15 - although perhaps with innocent intentions - has left an indelible imprint. Going through puberty, your insulin requirements inevitably increase. Nevertheless, a routine appointment saw my consultant at the time remark that I should really "watch how much insulin [I was] giving", because apparently the rate of my height increase was starting to be outstripped by my weight. I was a teenage girl, well within a healthy BMI. What is more, at the age of 11 I had been seriously underweight, very ill after being on levemir insulin for just 6 months. It made me completely lose my appetite, and become a shadow of myself. It makes that remark, a mere 3 years later, all the more irreconcilable.

A much healthier 15 year old
The girl on the left did not give a second thought to daily insulin totals, but very soon she would. She didn't know what a saturated fat was, although at the age of 17 (when she had been in the deep throes of carb restriction/purging for 6 months) a comment on "high cholesterol" levels would begin to change that. Words matter. I realise life doesn't come with a trigger warning, but this is such a sensitive issue and needs to be treated as such.

I am fortunate now that I have an incredible team in the Young Adults Clinic, particularly my DSN (specialist nurse). This summer I finally opened up to her about the 'incident' 6 years ago. She emphatically reassured me that I need never strait-jacket insulin doses to fit a generic formula. Diabetes is not a one size fits all; insulin is their to respond to your body, not vice versa. A bit like clothes... there at your service!

Finally being told this by someone on my diabetes team was very cathartic - it helped to put the fears of a young teenage me to bed. However, they still haven't gone to sleep. They do keep me up at night, and leave me quite exhausted at time. What I do is carry on with my day, each and every day, and as long as I do that I trust they all eventually rest far far away from my conscious mind.


The Tip of the Iceburg


For nearly a decade I maintained a healthy weight and did eat relatively freely. Diabetes is not the entire centre of my struggles - eating disorders are complex conditions. A lot of other things tie into it that, even now, I do not understand all of. Nonetheless, the toll of the relents blood sugar yoyo was the biggest catalyst.

It precipitated the day I woke up and had one weetabix instead of two. It was a case of very high blood sugar that first pushed me down the slippery slope of purging after meals; a compulsion that, to this day, I am amazed I managed to stop. My intention was blood sugar stability. However, it unearthed a monster a thousand times more destructive than any sporadic episode of hyperglaecmia (despite what perfectionism tells me, I have never had bad control).


I think my 16th Birthday (left) was the last time I 'freely' ate cake. I look so happy here, and although 19 and 20 did involve cake, I will admit that it still provoked anxiety over the 'insulin estimation game'. Suffice to say, it was still a big improvement on 18's Apple-gate…! 

I hope that, by my 21st, I will be able to eat cake without fear of consequence.



Some statistics place the likelihood of diabetics developing an eating disorder, as up to 50% higher than non-diabetics. Nonetheless growing up, I can recall being offered guidance on drinking, travel, even teen pregnancy… never eating disorders. I had a review with a dietician maybe 2 or 3 times? Incidentally, around a year ago I found a copy of a weeklong food diary I kept for a dietician. I thought it predated the real 'start' of my eating disorder… the content forced me to reassess that. The dietician's response at the time? No comment. Again words - or here a lack of them - matter.

Perhaps the one silver lining of this past three years is that, in casting back to my relationship with food prior to it, I have discovered that was it was far more restricted than it needed to be. Yes, I had the odd milkshake, ate puddings and didn't know what a saturated fat was (credit to the doctor who warned me of my 'high cholesterol' when I was in the early throes of my eating disorder…), but it wasn't normal. So while I want to get back to 4+ years ago, I also want to move forward.

The last two years have been filled with ups and downs, and still are. Neither diabetes or recovery can be tied in a perfect little bow. Right now? A more tyrannical diabetes of late has seen the bow unravel a bit more than I would like, but I am getting there. Coming to terms with that insulin number going up, just like a scale, is hard. But I am doing it. Since moving back to injections almost two months ago, I have also encountered a quite unnerving increase in insulin requirements. That there is no clear reason for this does scare me, but I am responding and am giving more insulin then I have in a good three years.




















These photos alone serve as a wonderful case in point to the wonders of Mr Carbohydrate. The 18 year old girl on the left was starved, cold, exhausted - effectively a prisoner. The girl on the right (summer 2013) was eating three meals and three snacks a day, more carbs than ever before in her life, and doing that meant she was able to walk the beautiful ball of fluff in her arms. Currently I am closer to the right photo, but my aim is to get fully back to it and this time to keep going.

Having something engrained into your head for 7 years is very hard to remove. Apart from feeling inherently 'wrong', I mostly fear blood sugar fluctuations from larger insulin doses. There is also the small part of my head still niggled by the eating disorder, which associates insulin with weight gain - however, not only is this untrue but, even if it was, the simple fact that I actually need to gain weight right now makes the fear unfounded!


The Answer?


For me it lies in rewriting the scripts - questioning things and realising that they do not have to be as they are. Taking the You don't know until you try road. It is far from a clear solution, and nor is it a prevention - at least not for me. But I future attitudes could be less rigid. Quite simply, let grapes be grapes. If nothing else, please take it on good authority - not the 'rulebook' written by self-righteous monkeys - that a banana won't kill you! 

Yes this is ridiculously cheesy, but for people
who know me it won't seem out of the ordinary…!

No seven year old should have to think she can never eat pizza again. No ten year old should be turning over the back of the desserts in the chilled section of a supermarket, to check if the carb count is "acceptable". No twenty year old should do that, either. Yet I know a twenty year old who still does it subconsciously. Who has come a long way in addressing these issues, but is in the ongoing - and quite foreign - process of penning her own rulebook. One she intends to have refreshingly few rules at that.

My milkshake brings diabetes to the yard,
and he's like "this cannot be yours"
But I swear, in that moment I didn't care… 
The simple truth is, I am tired of fearing carbs. Some of it has been founded, particularly with diabetes having been such a tyrant in recent months, my trust in carbs and counting has collapsed somewhat. Yet I know a lot of it is psychological, too. I need to rebuild that trust, but renovate it too - so many of those 'diabetes rules' I swore by don't need to exist for me to live a healthy life.

I have a subconscious bucket list, which I have made inroads with, but still have a lot to tick off. Among them are Christmas drinks, burger and chips,  simply going to a restaurant/cafe and not worrying about carbohydrates/insulin doses - picking what I genuinely want. Others are as seemingly trivial as a jacket potato and beans! This might seem bizarre, but for decade-old "diabetes rules" it was a no-fly zone.

I think my recovery "take a leap of faith" mantra could definitely help. If I eat a pizza and my blood sugar goes high? It is one reading. If I want a cosmo over a diet coke, why can't I? The banana didn't kill me! Perfect control is futile, but so will life be if you live it imprisoned by a number on a screen - or scale for that matter.

With type one diabetes, the number needs to be counted, but it does not need to count for anything.

Insulin is the medicine. Carbohydrates are not the enemy. 
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2 comments

  1. Would you like to write something about this subject for Insulin Nation? If so, email me at cidlebrook@epscomm.com.

    Thanks,
    Craig

    ReplyDelete
  2. Wonderful post! "Been there, seen that..." too. You see, I am a type1 diabetic too. Gongratulations on your recovery from diabulimia.

    ReplyDelete

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