Complications, scare tactics and survival

I’ll go blind or lose a leg if I don’t take care of my diabetes: that’s the one lesson I feel I took away from information given to me when I was diagnosed in 1997, just prior to my 9th birthday.

It’s all quite a blur but I remember those warnings. I remember feeling small and not understanding what I had done to deserve it, why me? Feelings of insecurity, self-doubt and hatred that would later fuel the beginning of my eating disordered behaviours had already started to simmer away in the background. For a long time I was in a state of denial, a little of which still remains in me. I used to pretend I wasn't any different to anyone else.

Language matters. Certain remarks are always remembered: I can vividly recall attending my diabetic clinic appointment at the age of 14 and just prior to the emergence of anorexia. I was at the upper limit of the healthy BMI range and my endocrinologist told me to be careful not to put on any more weight and that losing a few pounds would probably be beneficial to me. The next time I saw that doctor he congratulated me on the far lower number on the scale. He’ll have had no clue whatsoever as to how those words stuck with me and made me so fearful of becoming fat as I started to starve and shrink.

It seems that care has improved quite significantly for children diagnosed with diabetes these days, and the structure of treatment has changed: We no longer have to take set amounts of insulin and so stick to a regular, proportioned diet. Instead the basal and bolus routine means we can adjust our doses and take the right amounts needed to cover any kind of food we want to eat. Advances in technology such as pumps and CGM’s provide even more flexibility and some freedom from feeling so much like a pin cushion. But the rhetoric of blame and guilt for having diabetes and furthermore, the complications it causes is still put onto us. Most of all by the media and carried by members of the public that consume those headlines and read or hear inaccurate reporting regarding diabetes and so just don't know any better. The diabetes community which is most active within the social media sphere is fully informed and yet the ignorance that falls outside of that is still damaging and hurtful.

I see a lot of coverage of the potential complications of type 1 diabetes, even from charities and such that do it in a sensitive manner, but still I don’t see too much out there on management of them, advice on how to cope with additional chronic conditions in both a physical and mental sense. This is important and there needs to be guidance and resources available.

DWED are in fact in the midst of the production of a series of content packages which highlight on 4 separate common complications – these materials are available to our members. We have covered retinopathy, gastroparesis, and neuropathy so far and next we are moving on to nephropathy. For this I have interviewed a number of people with T1ED as case studies who also have direct experience of these complications. Common themes have emerged which also mirror my own history: shame, embarrassment, frustration at the false assumptions that other people around you may make. But also there’s hope, there’s perseverance and bravery.

Still, it can be too simple to think you are invincible and don’t need to worry about any of the longer term ramifications, not just yet. You aren’t at your goal weight yet. You’ll totally stop this stupidity after you’ve made it there. You’ll recover and graduate and be in your chosen career - you’ll be a proper adult, right? But months tumble into each other and then into years. You look back and think ‘damn, I really didn’t mean to do this.’

With complications you can feel totally safe until the **** hits the fan. Sorry, no way else I could put that! You don’t ever know when or what will come first, everyone with type-1-diabetes is different. Every time a new issue crops up I still feel like I am making a big deal and using up valuable appointment slots that could be used for other people. Again, that’s the sneaky self destruction in me. I know it too, but that doesn’t seem to make it any weaker.

I think that for people who also have an eating disorder the onset of complications often seems to come alongside a sense of fault and failure. Failure for being unable to control and cope with diabetes in the way they “should” do and putting themselves at risk through insulin restriction for weight loss purposes (“Diabulimia”) or/and the more ‘typical’ disordered eating behaviours such as purging by vomiting or cutting down food intake and calories [T1-ED].

T1ED can stamp you down with a double dose of guilt. Despite what other people may think about diabetes and the misinformed judgements they might make,  anyone that lives it knows the real facts, eating disorder or otherwise: That type 1 diabetes is not caused by poor lifestyle choices, and cannot be reversed or prevented. Yet, what about the complications it may lead to? You can never be certain as to when they may have developed and whether your eating disorder means you are experiencing them at an earlier rate. Honestly, I’d guess from hearing other people’s   experiences, for most it will be a definite contributing factor. For that you might feel real, raw guilt, guilt that feels more justifiable in comparison to the irrational-that-you-know-is-irrational Type 1 Diabetes guilt.

But is it, really?

An eating disorder is a mental illness and can feel all consuming. In the beginning you don’t think of the future, of still being ill in ten years time. Of having to deal with neuropathic pain and frequent laser eye sessions, a stomach that doesn’t work properly and can lead to quite unpleasant effects, far from glamorous or just that little thinner and fitter, like you intended to be. You don’t even consider that you might have to someday walk with an aid and not be able to go far on your own. But this is the truth of it, and I am merely glossing the surface. An eating disorder is sneaky, deceptive and can prevent the ability to seeing any kind of wider perspective Your world revolves around food and numbers and secrets, avoided diabetes clinic and nurse appointments, pretending you’ve taken insulin or eaten, or not eaten (after binging), lies that fall out your mouth with added embellishment for authenticities sake. It can make you feel completely powerless.

Confirmed diagnosis of complications may help or hinder someone attempting recovery from an eating disorder/T1ED or Diabulimia. It may feel they have been given a concrete reason that they need to try to take better care of themselves and so reduce further risk. On the flip side it is common to feel defeated and damaged beyond repair. From a fast moving car you look out the passenger seat and lose yourself in your own heads, until your body becomes so tired and the dissociation begins to lift – you notice the trees, grass. The breeze against your face and realise that none of it was ever worth it. You climb into the driver’s seat and try to steer but nothing is familiar. You want to stop and breathe but you realise the brakes are faulty; you’ll survive mostly unscathed after crashing the car against a safety barrier.

Nobody means to end up with a list of complications that for some reason seem to all hit at once like falling dominoes. Take me: coincidentally I’ve had a horrendous week with neuropathy, quite possibly due to medication changes. On Friday my balance was so compromised that I couldn’t walk in a straight line or hold myself up, and the pain felt unbearable – numbness and pain consecutively which seems like a contradiction but you’ll know exactly what I mean if you’ve been there. Next thing was on Tuesday I noticed another black ‘floater’ in my left field of vision so have an emergency eye clinic tomorrow.

I can’t really say how it makes me feel. I’ve had retinopathy for a while and three laser surgery sessions, but I’d ever been through neuropathy to the degree where it left me pretty much incapacitated. I did feel momentarily scared, when it was happening and my balance was totally off kilter, but that floated away and I am left with numbness, a whole lot of nothing, to a degree where I am almost nonchalant about it all.

The main element I wanted to bring into this is the effectiveness (or not) of “shock tactics.” I have recently concluded that I am pretty much immune to them. I think this is for two reasons: the first is because I have trouble giving a damn about myself – all that mental health head crap. The second I feel may be relevant to other with type 1 diabetes that were also told the horror stories growing up of losing legs and eyesight and even becoming bedbound. Some like me may have heard such horror stories numerous times over., thrown at you during another attempt to give you a 'wake up call'. It all gets a bit old. It perpetuates the isolation we already feel from the people around us without type 1 diabetes.

We know all the risks without even reading sensationalist ‘real life’ type stories. We are the experts of our own condition. Personally, nothing anyone could say to me in terms of possible dangers of  mismanaging my insulinr would ever faze me.

This is something I wish my family and some friends could accept. I KNOW it comes from a place of care, but the things they can say to try and jolt me out the eating disorder I’ve had for over half my life, and make me face up to what I am doing to myself. I don’t need that. It doesn’t help, and it can actually hurt. Instead I need to be listened to and be able to rant about type-1- diabetes, about neuropathy keeping me awake at night and blurred vision that means I have difficulty reading some labels. Being told I brought this on myself just makes me want to withdraw and beat myself up inside a little more. The bottom line is that shock tactics have no influence on me beyond causing upset. Too many lectures over the years have worn me down and people should save their breath.

I’d be interested to know if this immunity to ‘scare tactics’ is a trait many other type 1’s feel they have. Do you suddenly ‘wake up’ and tighten your monitoring and dosing accordingly if you develop signs of complications? Furthermore, if people tell you that you might need amputation one day or lose your sight is it effective in causing you to act and try to regulate your sugar levels? Or is it support and an acknowledgement that you are doing your best to get through the days that is more useful in helping you to start making changes? I wonder if this is different for people with T1ED due to the influence of how we feel about ourselves.

The names of diabetes complications are not even of use, really. It’s the impact they have on us and our general quality of life that counts. Burying our heads in the sand is no use, but still, there is no need to catastrophise. Complications may not be completely cured but they can be treated. Health Professionals have the means to try and stop progression with medications, changes to diet for gastroparesis and procedures for retinopathy ranging from laser eye surgery to vitrectomy surgery.

Complications are not a death sentence or burdens weighing us down. Every single person I interviewed on the subject was surviving despite really tough circumstances. Type 1 diabetics are the strongest people I know and stronger more for dealing with such life altering complications. We keep going and even on low days, we don’t give in. We hold each other up if we need to and remind each other that guilt and blame has no place. Dwelling on what might have been is futile.

By Claire Kearns.

Action plan

Sometimes I worry that I’ve completely exhausted blogging about type-1-diabetes and eating disorders to death. But then when I can’t sleep at night my mind won’t shut up; it’s over thinking all of the things that I haven’t said, niggling doubts and grievances I feel I need to let out. I just hope nobody reading these blogs is sick of my rambling!

Type 1 diabetes is always there, canoodling with anorexia, providing me with the fall back insurance tool of being able to manipulate my insulin doses to control my weight.I fear hypos most of all and struggling to accept the basal adjustments my specialist nurses urges me to make. It’s still a constant battle to stay attached to my pump, and it’s disheartening to still hear ignorance and judgment on both type 1 diabetes and eating disorders wherever I go. The combination of the two still seems to be a wildly foreign concept to most members of the public that have no personal investment in the issue.

This is still frustratingly the case even after a number of notable print and online articles that have been published over the last couple of years on Diabulimia and the prevalence of disordered eating in individuals with type-1-diabetes. The brilliant documentary “The World’s Most Dangerous Eating Disorder” which was aired by BBC Three last year led to widespread acclaim and we were so pleased. For a while, with a surge in our website traffic and social media interest, it seemed like it could be a major breakthrough.

In retrospect it merely splintered the glass surround which makes it easier for outsiders to see through but the other side which means options of treatment and true acknowledgment is still so unreachable. This despite coverage of far too many unnecessary death and statistics revealing staggering mortality rate that prove that those with T1-ED and/or Diabulimia walk shakily close against the edge of a tall building every single day.

Yet the reaction to that reality is quite predictable a lot of the time, still: “how stupid can they be? How difficult can it be to just inject if it’s a matter of life of death? Don’t they realise how crazy they are to do that?” and oh of course, there friend or relative has type 1 and lives a healthy life, their diabetes does not really affect them at all!” The eye rolling and that frustrating and wholly misjudged that is still used by clinicians: “non compliant.”

There has certainly been positive change lately and that is an achievement, small feats that add up like another stone to the fortress walls and chip away at attitudes that ultimately need re-education. More of us are asserting ourselves, challenging stigma when we hear it.  Some health providers have really stepped up and trained themselves and their teams (whether that be diabetic clinics or eating disorder units) as best as they can in the shadow of NHS funding cuts. On a wider level there have been conferences and numerous new research studies on the disorder.

Widespread discussion on the importance of the right language used within healthcare settings has been a hot topic on social media just recently. Twitterites Renza/Diabetogenic (@RenzaS) and The Grumpy Pumper (@grumpy_pumper) have been fantastic advocates on this matter, as well as Dr. Partha Kar (@parthaskar) and a handful of other HCP’s, all of which should be applauded. I only hope that this evolving dialogue continued to spread further afield beyond the tight knit diabetes community that is mostly found on Twitter or\ Facebook.

We are shouting, hollering.  Louder now after some people have begun to notice, to react, largely as a result of the documentary. Still, it can be entirely frustrating and exasperating.  It can often feel like you are left with nothing but a sore throat and strained voice as the people that should be listening walk away oblivious. It’s hard not to feel bitter, to dwell and let resentment fester.

Hope can fuel a surge in determination one minute, almost excited by the common goals, the shared anger and upset, and that camaraderie found among a group of fellows with type-1-diabetes. It can be a fierce energy that rises up and bounces back and forth with re-tweets and the swapping of blogs that for the most part, are completely spot on and relatable to you, in at least some parts.

That understanding, compassion and sense of community is truly valuable, it means we know we can fall down and be held back up. That we can feel comfortable to rant and moan about unpredictable sugar levels, neuropathic pain or even giggle over the humour of common #diabetesprobs. Plus those diabetes memes which can be hilarious to us, (well me anyway! Perhaps I’m too easily amused,) but absolutely baffling to those with functioning pancreases. I’ll never forget sending a friend some of those “diabetes cat” images and protesting about how funny they were. On the contrary, she was completely baffled and the humour I saw didn’t compute to her one bit. Not her fault at all, but hey a fellow diabetic would probably find them as funny as I do.  Is there anyone with type-1-diabetes that can’t appreciate the thought of Hansel and Gretel style blood test strip trails and those don’t-give-a-fuck-attitude ee cards (see below!)? Laughing is a good remedy.

Friends and family can be amazing when they try to appreciate our daily struggles and be compassionate, but the fact is that only we can know what it feels like to deal with chronic and largely invisible illness every day, every minute and every second without any reprieve from it. For me at least, despite a sense of patience and the fact that I know I am cared about, it is still all too easy to detect a sense that I am a miserable bore when I talk about diabetes woes. I’ve been told that I am obsessed with my own disease and need to find other things to focus on by so called friends.  I’m always complaining, and there’s always some medical pain I am suffering with. It makes me feel like a huge drama Queen and hypochondriac.

There is some truth in it, in that yes distraction can be good and thinking about your problems can make you more miserable. But the reality is that this illness never relents, and it can’t be ignored. The control it has over our bodies and our minds is like a swarm of hovering gnats hovering around us as we stand in a room with the windows bolted shut. You can swat them away but you’ll never catch and kill them. The only way to breathe is to let in some fresh air, and give them a way out. It’s not fair that we should be told to ignore the biting to the back of our necks when it just means we’ll be left covered in a rash of sore red welts. Why should we be ashamed to vent, if that is something that helps relieve the burden and ache of it all a little?

So I may have gone on a bit of a tangent here, down a rabbit hole. But I do have a point ultimately and that is the urgency of some real action. Awareness is always positive but it isn’t enough, especially when it is rarely put out into the public sphere. We need strategy, we need government action, and crucially we need the godamn media to sit down and pay attention for once. They seem to be completely deaf, the newspapers anyway, some more guilty than others of course. But every time there’s a ridiculous headline, they lump type 1 and 2 together or suggest we cure ourselves with okra, cinnamon or a better sleep routine, we make a fuss and call them out, sometimes they apologise and then a few weeks later the exact same kind of thing occurs. It’s blatantly disrespectful and insulting to be placated and then blatantly ignored for the sake of causing a reaction or even a moral uproar to stats on the amount of money diabetes care is draining from the NHS. (And yeah, better care and earlier interventions=less hospitalisation and less expenditure, isn’t it a no brainer?!)

I am saying all this but do I have any idea myself? Well yes, I do. First of all with the papers - as a DWED representative I am challenging myself to call the big wigs at some national papers and confront them on their failings. Starting with the Daily Express, yep. So wish me luck, right now a frustration is motivating me but I may want to hide scared tomorrow. Which is why I am stating this here: I will do this. I will record those calls and I will report back in a later blog.

Second is a project where you all can chip in and put your case forward if you wish. When I spoke to (the truly amazing) Norman Lamb in May for a recording which is uploaded in our members area, he offered to take DWED’s case forward to Jeremy Hunt and have it raised in parliament. This would be in the form of a letter that we will address to Jeremy Hunt that will specify just how crucial it is that people with T1-ED and Diabulimia have access to better care, which can be done with the shuffling of money, with training across the boards, more knowledge given to GP’s, AN OFFICIAL DIAGNOSIS. It may fall on death ears, but it’s worth a good damn shot.

What we need from you are testimonies that we can add to the letter. Real life truths from people with T1ED that want to push the message that further change is needed NOW, those that feel devastated and worn down, and let down by a lack of adequate support services. Submissions from friends, family and carers would also be so helpful, especially as sometimes their loved one is unable to advocate for themselves, or in the worst, most saddening instances, they are no longer with us to do so.

I will be setting up an online form for submissions in due course and will amend this blog with that link. [4/7/18: Please find the submission form here.]

Keep fighting everyone, it’s cliché but all of you out there with type-1-diabetes, with or without an eating disorder, are fighters and probably so much stronger than you believe. Hold on. Let’s act on this. We are all in this together. Keep looking at the stars instead of blackened night’s sky. We might not ever be able to shoot for the moon but we can aim for the stars.

By Claire Kearns.

What's In a Name?

“Some of the most wonderful people are the ones that don’t fit into boxes.”

That’s one of my favourite quotes by Tori Amos that celebrates those of us that feel alien or abnormal as wonderful freaks. It rejects the idea of fitting into moulds or being confined and rectangular. I don’t like the idea of type-casting people and stamping their heads with statistical criteria. This very much extends to the notion of diagnosis, particularly when it comes to mental health.

Why? Because it feeds into the concept of being defined by a disorder and having it steal identity. Nobody is the sum of their eating disorder, their depression or personality disorder. It may feel like you have lost yourself when you are entrenched by your illness and diagnostic labelling can exasperate that. The case may be especially true when it comes to eating disorders that are distinguished by weight guidelines that seem to categorically define you al too easily.. It has always seemed bizarre to me that you can be a bulimic one week but a few pounds less the next and you are suddenly ‘anorexic type 2, (with binging and purging). Of course as much as we might deny that weight matters in determination of how sick you are, that anorexia classification is a prize in place of bulimia, when weight loss is always the sick goal.

But someone with type 1 diabetes shouldn’t be given a diagnosis or either anorexia or bulimia, even if those disorders are recognisable by behavioural features. A person with type 1 diabetes and an eating disorder always needs to be treated in a different way to someone without diabetes. This is why we actually DO need some official terminology.

Diabulimia is not the best term for a number of reasons that I won’t go into now, but it’s something that has become familiar, largely by way of the media. ED-DMT1 is a foreign language to most people, fairly so as it’s a clunky mouthful of a word and so T1-ED is a better fit and literally states what is in the tin, Type-1-eating-disordered.  Regardless of what it is, we need to have SOMETHING formally recognised and defined by clinical features as a matter of urgency. The lack of such is costing lives. People with diabetes and eating disorders that are in serious need of sufficient care are being routinely overlooked dismissed and invalidated by doctors that can’t distinguish an issue worth dealing with, ir's one that they cannot put in a pin into or find in their medical books. This kind of reaction from health professions can be hugely damagiing and make someone feel even more reluctant to seek out help. It can lead to the false conclusion that their problem is not a serious one as a disordered mindest creeps in too easily: a toxic, irrational voice  whispering that you are not sick enough or worthy of support.

A concrete diagnosis would make the medical profession sit up and listen as well as providing those with T1-ED with the means of validation. It would open the gateway to appropriate treatment facilities and become simpler to explain when raising awareness and informing those that are unfamiliar with it as an illness.

 But furthermore, setting parameters around the means of identification are important. By this I mean distinguishing exactly what T1-ED consists of. It should ideally contain subtypes for anorexia and bulimia that run alongside but not separate to type 1 diabetes. Insulin omission or ‘diabulimia’ certainly needs to be pinned down by a particular number of omission episodes, because of course missing an insulin dose one time does not mean someone has diabulimia, just like one episode of self induced vomiting does not equal bulimia. Other documented factors may involve a fear of insulin and rejection of diabetes care services.

I still don’t like labels.  I feel that classing someone as a person and not a diagnosis is important. Essentially, I feel that patients should always be considered individually rather than being lumped into a pile with others that share a diagnosis. No one person with an eating disorder is the same as someone else and so treatment should be tailored accordingly.  This means listening, and allowing doctors the time to do so. Evidently an injection of NHS funding could not come soon enough.

So, what’s in a name? Nothing, yet absolutely everything.

By Claire Kearns.

 

My Recovery From Diabulimia

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

****

 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.

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

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.

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.

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.

More people need to understand of how severe mental illness can blot out factual thoughts like thickly splodged Tippex over typos.

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.