My Recovery From Diabulimia

Please read this story of hope shared by one of our members. Recovery is possible.

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 My story is much like that of many others with type 1 diabetes.  I had just turned twelve-years-old when I was diagnosed and had no clue what I was doing but I checked my sugar levels and aimlessly injected random amounts of insulin in the hope I was getting it right.  Two years down the line the only thing I#d ever heard at my regular clinic visits was “you need to lose weight”.  This became something I rebelled against in the years that proceeded. This in the form of eating anything and everything, avoiding clinic check-ups and telling lies to the healthcare professionals and worst of all my family.

I got to a stage where I never checked my sugar levels and no longer took my background insulin.  I knew I was making myself Ill but found it hard to get back to a routine because I never really had a routine.  The advice I had been given as a newly diagnosed T1 was completely wrong by today’s information and knowledge into the condition.  I took the courageous step of writing down how I felt and what I was doing and gave it to the diabetic specialist doctor.  She was very kind and told me it was okay but nothing else was said and I was given no guidance.  I felt let down.  I continued with my life and no positive changes were made as I didn’t know how to do it on my own.

I started to cut back on the amount of injections I was taking after a trauma in my life.  My big brother passed away and for the first time in my life I didn’t turn to food for comfort, I felt the complete opposite and found I couldn’t eat without feeling sick.  I started to lose weight and it felt good but felt I needed to lose a lot more weight as I had reached my heaviest.  I became obsessed and found out that the less insulin I was taking the more weight I lost.  I regained my appetite and liked the idea that I could eat what I wanted and kept my weight low. 

By the time I hit the age of 27 I had it down to an art and had lost a large amount of weight.  I loved hearing people gasp and telling me how great I looked.  Someone told me in disgust that they could see my collar bones but this only played to my ego and I took it as a compliment.  For the first time in my life I could wear beautiful clothes, men found me attractive and people were telling me I looked great.  At this point I wasn’t suffering any side effects unless of course you couldn’t tolerate feeling extreme thirst, nausea and exhaustion.  I continued to live this secret life and lied to everyone that it was easy: “oh I just don’t eat as much” - which I didn’t and that it was just down to walking. This was the perfect diet and I’d cracked it.

Slowly though I started to notice my hair falling out,  damage to my vision was detected and I was vomiting a lot.  On numerous occasions I tried to gain some control and sought the help of my GP who in turn referred me to the eating disorders team.  Sadly it never helped me as the only treatment available was what would be the same for an anorexic or bulimic. They didn’t understand the complexities of this eating disorder and so I gave up my visits.

I felt lost and depressed; as if nobody knew how to help me even when they tried.  I wanted to help myself but wasn’t strong enough to break the cycle, my addiction to being thin.  It got to a point where I wasn’t injecting at all and ended up in bed for a week. I was so weak and tired that all I did was constantly vomit into a bucket at the side of my bed.  One day I got in to the bath to wash and warm my frozen body up. I floated there far beyond the time I should have and the bath was so cold again it hurt my skin.  I had no energy to pull myself out of there but I somehow summoned enough to do so and wrap a towel around myself.  I stumbled through to my sofa and lay down.

Stressing the difference between type 1 and type 2: Why do we care?

“That’s what people get when they eat too much sugar.”

A chance remark and nothing of note to the woman that said it. But to me, it stung.

This was overheard while waiting for my prescription in Lloyds Pharmacy. A little boy keen for knowledge asked his mother to explain what a poster concerning undiagnosed diabetes was about.

I have been irked by the campaign this poster is a part of for some time already. They were first displayed during diabetes awareness week back in June but have remained in stores, tacked to the front desks and to outside windows, ever since. They state that “11 million people have undiagnosed diabetes in the UK. It uses the word ‘diabetes’ as one sweeping, blanket label. If you squint you might notice a tiny little asterisk alongside the word, which denotes ‘type 2’ written in nondescript letters in the bottom right hand corner.

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Within the diabetes online community the lumping together of Type 1 and Type 2 diabetes is often a hot topic. But it recently occurred to me that I’ve never addressed it myself in a blog despite having spoken a lot about it in offline conversations and on social media. After the incident in Lloyds Pharmacy it struck me that I needed to write that blog. This one.

Let me stress from the outset -this is not about attacking people with type 2 diabetes or waging a war of type 1 vs. type 2. That unpleasantness is something I hate. Diabetes is a pain in the arse for anyone that has it, and we all have the right to moan and vent if we need to. But there are differences here which must be made clear whenever the conditions are referred to.

So to the facts.

Type 1 diabetes is an autoimmune condition whereby a fault in the immune system triggers an attack to beta cells in the pancreas. When these beta cells are destroyed the body is unable to producing insulin which can lead to blood sugar levels rising to dangerous levels. Type 1 diabetes must be treated by insulin injections or use of an insulin pump. It diabetes cannot be reversed or prevented and is never a result of any kind of lifestyle choices.

Type 2 diabetes comes as a result of insulin resistance in that the body cannot use insulin as it should or from the pancreas being unable to produce enough insulin. It can usually be controlled by medication in the form of tablets alongside diet but in more advanced stages some people need to inject insulin.

A type 2 going onto an insulin regime does not mean they are a type 1. Type 2 diabetes is most commonly diagnosed in later life but is becoming more prevalent in young adults and even children. This is due to poor eating habits and lack of exercise which results in obesity. I must stress however that type 2 diabetes is certainly not always caused by poor lifestyle habits. There are a number of other factors that can be a trigger such ethnicity or genes as you’re two to six times more likely to become type 2 if you have a parent, brother, sister or child that has it.

Why is all this important? Why does it matter that people realise the difference between type 1 and type 2 diabetes?  Essentially because they are separate diseases with very significant differences.  Conflating the two is akin to believing breast cancer is the same as bowel cancer. Yet new research by healthcare provider Abbott into Britain’s views on diabetes recently found 43 per of UK adults can’t tell the two types apart.

This lack of comprehension can be upsetting to people with type 1 diabetes as it often can lead to ignorance and stigma. It is not uncommon for a type 1 diabetic to be faced with unwelcome views from the misinformed public that may believe they did something to contribute to the onset of their condition. Advice given on how to cure type 1 by way of various ridiculous remedies (okra, cinnamon, more sleep) can also be a frequent occurrence. It may be believed that type 1 is more easily controlled than it is which reduces acknowledgement of its severity and threat to life. All of these reactions can cause someone with type 1 diabetes to feel a misplaced sense of guilt or shame and lead to mental health problems.

I can envisage it now. A scenario has played out in my head repeatedly since I heard that exchange in the pharmacy: that little boy approaching a newly diagnosed type 1 in his class at school and asserting that they must have it because they eat too many sweets.  It happened to me. It’s happened to so many of us. It’s not the boy’s fault, he knows no better, but the kid that he talks to will take it in, it will be remembered. For me those kinds of comments festered, and grew into paranoia about what people might think; that I was greedy and had brought my condition on myself, which led to a very damaging belief that I needed to remain a certain size as some kind of effort to challenge that.

Also, you know what? Lloyds focused entirely on type 2 in their coverage of Diabetes Awareness Week, which is just not right. They may have stuck some information on their website but I certainly saw no mention of type 1 diabetes in any of their publicity. One in ten of the diabetics in the UK are type 1, and we should not be marginalised. We deserve to be heard and have people made aware of what we go through everyday

 It just keeps happening, again and again and again despite many people’s efforts to educate the press and repeated polite requests that media coverage become more mindful and stop presenting diabetes as just one illness.  The roll call of Daily Express front pages that shout “Yoghurt is key to beating diabetes”, “Eat fruit to fight diabetes” or “Diabetes risk in red meat” (all genuine headlines)  has become quite a joke, one that is a matter of laugh or you will cry.

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In fact, the media has a lot to answer for when it comes to perpetuating misinformation about both types of diabetes. Not least when it comes to the reasons why someone could develop type 2.  Given the way the relationship between eating habits and type 2 is covered in the media, it’s unsurprising that so many people think that the only cause is obesity.

Newspaper headlines are a case in point. 'Wonder cure for diabetes'” (The Express, again), 'Is there a natural cure for Diabetes'  (Mail Online) and 'Eating potatoes before pregnancy increases risk of diabetes' (The Telegraph), to name just a few more.,  Sensationalist splashes like these only need one tiny word and a single digit number to become more accurate and less damaging. Is it so fucking hard to add 'Type 2' before the word diabetes? Or to stick in the word “some” when reporting on obesity and diabetes? When will they listen?

After the incident in Lloyds I spoke to a representative from their head office about my objections with their campaign. She was apologetic and seemed to be listening. She told me she would take my points forward and that Lloyds would endeavour take more care with such representation in the future. Time will only tell if that will be the case. All I know is that now, during Diabetes Month, those posters are still up and there are no amendments to the information displayed.

Fortunately in social media we have a powerful tool which is the growing strength and camaraderie of the online diabetes community. This blog will I hope serve to contribute to our endeavours to counter the ignorance and myths. I plan to retweet it far and wide. We need to reach out far beyond the parameters of just the #GBdoc bubble.   There are people who need to read this, and that is why I needed to write it

I am trying to imagine that little boy from the chemist in 20 years time. Perhaps he will have his own curious son who will be interested to know what diabetes is all about. As a father the boy will be informed and have the right insight to relay. Without hesitation he’ll explain that diabetes is actually a term that is used for two distinctly separate conditions. This can be the reality if we continue to chip away at ignorance and collectively object to every myth and inaccuracy we come across. We are in this together and we need to keep shouting.

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By Claire Kearns.

The meaning of hypo awareness

This week (2-8 October) is hypo awareness week

This is such an important subject to keep talking about. At best hypos can be a irritating disablement, but at worst they can be traumatising, anxiety provoking and quite often fatal. 

At the forefront of my mind is how yes, hypoglycemic episodes can be difficult for anyone with diabetes to endure, however it’s a whole different playing field when you add an eating disorder into the mix.

A hypo launches you into survival mode. The options are simply to obtain and ingest glucose ASAP or die. There is no other alternative. But for someone with an eating disorder and type 1 diabetes this can be hugely distressing. and prompt challenging thoughts. The choice to submit and take in those calories may trigger a whole load of guilt to sit on top of that which already exists

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During my last admission as an inpatient on an eating disorder unit hypos became an extreme fear for me As I felt my hands start to tremor a sense of dread would set in as I tried to pretend it was not happening and I was no different to anyone else.. I felt guilty, so guilty, of having extra in addition f the prescribed diet. This was in a place where so many others around me were trying to trim their meal plans down as much as they possibly could. Biscuit crumbs and slivers of butter hidden in covert places, a splodge of jam left under the container lid.. Every calorie was counted and any unexpected increase in portions, or even a slice of pie that looked too large or scoop of mash that was overly heaped, often resulted in dinner table meltdowns.  

I can't deny that such obsession was inapplicable to me, but when it came to hypos, I had no right of refusal. It became quite frightening as my insulin was increased and i was experiencing hypos on a daily basis. I had to guzzle down cups or Lucozade, measured to the hundred ml (I always told them it wouldn't be enough, and so another 100ml and often yet another would follow). followed by biscuits, all while shaking and disorientated. But most of all I felt I would be judged for being weak somehow,  for giving in, perhaps not directly by my fellow patients but by their eating disorders. I felt gluttonous and so ashamed of giving my body what it needed. That’s an eating disorder in a nutshell, really.

How dare I allow myself any semblance of good health?

Eating during a hypo is unplanned, it is frenzied and without containment. It can easily lead to binging; desperately inhaling sugary foods as you try to grasp reality, often leading to high blood sugars. More guilt. Surrounded by a pile of chocolate wrappers and an empty cereal box. Emerging from a blurry, half conscious state and berating yourself for a loss of control.

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So this year, following the release of the BBC Documentary which has led to a rise rise in press and advocacy concerning Diabulimia and ED-DMT1, please consider what hypoglycemia might mean for sufferers of these conditions. Being hypo aware is about more than just having glucose to hand and knowing the signs and symptoms. For people with type 1 diabetes and an eating disorder it involves being aware of the difficult emotions that come alongside. It means accepting medicine and acknowledging that treating a hypo is about essential need, not greed. It’s about giving yourself permission to fight against that toxic 'voice' that tells you that you do not deserve to eat, to norish yourself, to live.

By Claire Kearns.

Too Many Losses

After every death by suicide or misadventure comes an onslaught of familiar comments. Mostly well meaning and kind-hearted comments but ones that also make me want to scream.

Lately, a number of these types of losses have been close-to-home. The first, around a month ago was one link away via mutual friends that were left devastated, with circumstances that resonated a little too much. The second, quite close to heart that I am still struggling to comprehend. The third, most recently made the news of my small local home-town. All of them have me poignant somewhat numb, and extremely sad. All of them were individuals that seem precious and have left a space, an ache.

Everyone reacts differently to shock and grief. No way of trying to cope, adjust, regroup, is wrong or anything to be ashamed of under the circumstances. But there are some people that will understand the pull of mental illness, and some that just cannot. There is no fault here, but I want to offer some words of clarity. Words I feel the need to say.

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The fact is that depression does not care if you are young and full of promise and potential. It does not consider that you have so much more to experience in life or that throwing your future away is 'such a tragic waste'. Neither will it grasp that you have money, a good job, a loving family or privilege over others.

Crippling anxiety cannot rationalise that things can pass, get better, that those moments of sheer terror will not overwhelm you. It will not comprehend that there are GOOD sources of help to be found, sources of valuable support and health professionals willing to listen.

Eating disorders are blind to the concept of existing without starving or harming yourself in an attempt to shrink. At their worst they will not allow you to see that you you deserve anything more but that constant misery. Anorexia, bulimia, EDNOS, BED or Diabulimia: they all have the potential to diminish your sense of worth to dust and stamp all over it.

When mental illness is at it’s most unrelenting and ferocious, it simply does not give a shit about anything besides a destruction, whether that be a way to cope or an end goal. It will take any opportunity it can to knock you over, and with every swing and punch you fall further down, further away, until you're left with a bashed up broken brain that cannot think straight.

I can see how it can get to the point where somebody might feel like they've no other option, and no strength left to fight. That is not a sign of being flawed or any kind of weakness. Rather, it is the full-force impact of defeated by something too powerful and suffocating, like a lump of coal clogging your throat.

Most of all, a message to the moronic that at times like these seem to rise from the ground like clusters of worms with their oh-so-important utterances: suicide is not stupid or selfish or ungrateful. Those views are vile and completely ignorant. Also, media, please take note that in this age describing suicide or attempted suicide with the damnation of“commit” is unacceptable, as it is no longer a criminal offence and has not been classed as such since 1961.

To the aforementioned: you are not that person, you have no right to pass judgement on them. You have not stood where they have, seen or thought what they have, or rather been unable to see what they need to.

In essence, what it essentially comes down to is that severe mental illness can blot out facts like thickly splodged Tippex.

It's a fucking parasite of a thing to have to battle with. Some do it every single day, and it can hurt like hell.

If you are one of those people then try to hold on with the tightest grip you can, and try to remember despite that stalking cloud and the trailing whispers or smoke, that you are not doing it alone.

By Claire Kearns.

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