It's okay to not be okay

I’m incredibly tired. It’s been far too many years, and the metaphorical concept of shit sh*t hitting the fan was truly made for describing the sudden and crippling impact of type 1 diabetes complications. It feels like being pelted with bullets that are constantly firing from a smoking gun.

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But it’s okay to feel like we can’t cope, okay to feel like we need some extra help when everything feels too much right ? Even me? The idea is so foreign to me, it feels wrong, it feels like a betrayal to all I’ve ever believed, that I should seek that help.

Diabetes is relentless, all consuming, even when it exists without deep-set mental health issues.

Eating disorders are always exhausting, they strip you of strength, and I’m in tatters. It’s slow at first isn’t it? You can feel like a cat with nine lives that just skims the edge of danger, until suddenly you realise you sink in like sugar dissolving into a bowl of rice krispies, a crackling echo rings in your ears as you feel yourself questioning just how long that damage had been simmering under the surface, and every warning sign you brushed away.

I just want my brain to stop wittering at me, every day, a slow and deep hum that goes on and on. I ache inside.

It’s okay to to not be okay I am trying so hard to rewire my usual faulty belief system. But it’s like being a toddler and trying to walk and talk. I see where I want to go and what I need to be doing out in the world but I can’t will my shaky legs to move. I merely shake and continue to ruminate.

But it’s okay to admit you can’t do it on your ow anymore. Maybe me too?

It’s okay to let someone else care for you, particularly if your life depends on it, isn’t it?

Falling down the rabbit hole and embracing insanity would be a silent release, - slipping away, a relief of no longer having to try.

But there’s no way I don’t find that guilt, the shame in other places. But least of all, the fact I’d given in.. Denial just doesn’t fit me the way it used to.

Drained, wasted an wrung out like soggy dishcloth.

It’s okay to not be okay, right? To say it out out loud? To admit you just can’t do it on your own.

I’m just so, so tired. It hurts.

It’s time to take a chance. I have to.


By Claire Kearns.

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 the information given to me when I was diagnosed in 1997, just prior to my 9th birthday.
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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 clinc 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!

Diabetes is always there, canoodling with anorexia and my fall back insurance of running high blood sugars without taking quite enough insulin. 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.

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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.

I'm All Too Aware of Eating Disorder Awareness Week

This week has come around way too quickly again: National Eating Disorder Awareness Week.

*sigh*

Snippets of NEDAW specific media have been cropping up for the past two weeks and I have become increasingly apprehensive about the days ahead. Of the stories I might see. The photos of tortured faces and skeletal bodies. The swapping of confessional histories, tallies of hospitalisations and physical complications. Then ultimately the lip biting and need to stifle judgement it all may personally lead to because I really don’t want to upset anyone. It’s all so precarious.

I am very much aware of eating disorders. Too aware. Painfully aware. I wish I wasn’t.

I find the whole EDAW thing completely draining and part of me wants to burrow away into a tight ball and hibernate till it’s over.

One of the most difficult things is the barrage of confessional life stories that we will hear - I’ve already seen many cropping up on various social media platforms. I don’t mean to criticise individuals posting this confessional stuff  - I really do recognise that intentions are good, but there’s a distinct gap in understanding and sense of consequence there. A lack of care over the content they are presenting to what may be a particularly vulnerable audience.

We all say it eating disorders aren’t about weight. But the anorexic voice can be almost laughably predictable in obsessing when it comes to our own weight. Personally, I avoid pushing inspirational advice to anyone else, because I know the way I look and evident behaviours can make it sound false and patronising. But others don’t seem to see the problem in doing this. Yes, it’s okay to talk about your struggles, your successes, and nobody should have to hide away from a camera capturing real life moments - being ill is nothing to be ashamed of. But I can’t help but think people should think twice before posting objections to flawed media coverage and damaging advertising when their posts made contradict their arguments. Preaching about fighting stigma and how eating disorders are not about weight on Facebook rings hollow at best when accompanied by emaciated photos. If it’s not about weight then nobody needs to see them.

Certainly, if looking back at those painful reminders helps someone personally to feel motivated and want to continue in getting better, that is great, but surely it can be done without exposing it to a public space with the potential of causing others harm? I do completely empathise with that nagging need for validation, but putting that responsibility onto others is unfair, especially if they have eating disorders themselves.

It feels like standing in an echo chamber when coverage starts to crop up on your social media feed. Voices bounce back and forth against the walls, each one trying to increase the volume of pitch, be louder than the rest. Yet the people that really need to listen and take notice are outside in the open air and completely oblivious.

EDAW is supposedly about raising awareness and educating people. But I just don’t think this kind of approach will ever educate anyone much at all.  The media regularly sensationalises their lifestyle articles with low weight photos for shock tactics. It’s not really that startling anymore, and whether partially aware or not, the fact is that these posts really have the potential to affect followers in adverse ways.

The cherry on the cake this year is that the focus had been set by B-eat as ‘early intervention’. Don’t get me wrong, early intervention is hugely important and a worthwhile topic that needs acknowledgement, but to me, right now, it feels like another huge slap of rejection and dismissal - invalidation even. See, early intervention has ALWAYS been important, but it’s only in recent years become cast into the spotlight for attention, yet what about those of us who didn’t get the early intervention we needed - WE needed it too – we didn’t get it then, and we need support now. [Another blog to come on this later in the week.]

I feel like what those of us that regard ourselves as advocates need to be working towards is challenging misconceptions out there. Because although eating disorders are being talked about more and more, it’s too often couched in ignorance and misinformation.

This is particularly relevant in regards to ED-DMT1 or diabulimia, which is only just becoming more talked about. Despite the success of more widespread coverage over the years there have been a lot of mixed messages about what diabulimia is and how it is distinct from ‘ED-DMT1’. DWED aims to put up definitions and resources relating to this as part of our new ‘about us’ page soon. We feel we have achieved our first goal which was to just get more people to hear the term ‘diabulimia’ and begin to talk about it.

Awareness – about eating disorders in general and diabulimia specifically - can be raised without implicit competitiveness. Without showing photos and offering stats in an attempt and prove our right to a voice. We all have that right. Words are more meaningful, and all of us offering any commentary during NEDAW need to stop and think for a second before we press the send button: it can be too easy for the eating disordered mindset to sneak in despite our best intentions. Let’s be real and let our stories stand alone and challenge each other if needs be. The fight is not over, but often we can be shouting so much that we fail to realise the hardest fight begins closer to home.

 

By Claire Kearns.

A day in the life of someone with type 1 diabetes and an eating disorder

My alarm wakes me from a foggy sleep after a night regularly interrupted by getting up at regular intervals to use the toilet. A result of high blood sugar levels, the smell of ketones on my breath. Finally, at 4am I allowed myself to take enough insulin to bring me back down to steady ground.

My first feeling is the dread of another day. Secondly, my thoughts turn to food. Thirdly, I realise I am shaking.

The dreaded morning hypo. I must have overshot with the insulin, sent myself crashing through the roof and the floor. Ugh, stupid idiot.

Manage to pull myself out of bed. Thankfully avoid the scales, as the result of weighing myself is never helpful. Whether the number is up, down or even the same, it is guaranteed trigger something problematic. The day will be ruined in one red blinking flash. I don’t want to know.

So on to the bottle of Lucozade, stumbling in a drunken stupor. I gulp it down in a panic, grasping the bottle precariously with frantic jumpy hands, trying to not acknowledge the calories I am ingesting. I cannot see properly and cannot think straight. I spend the next twenty minutes laying on the sofa with my eyes closed, everything spinning, my mind gradually coming back to me.

Breakfast. I can do this. Ever since day-patient treatment at a local eating disorder unit (ultimately a shambles, let’s not go there) I’ve been able to keep cereal as a staple safe food. The idea that I’ve already had Lucozade and so don’t need breakfast occurs to me, but I am able to push it away. My stomach is tight with hunger, or what I think may be hunger but I am not completely sure I know what hunger is. It’s hard to decipher when you are constantly starving and cravings are mostly dictated by emotion.

Cereal and coffee, always. And insulin. I am on a pump which takes away the conscious process of having to find a pen, dial up and inject, but still, pressing the ‘ACT’ buttons to administer a bolus is not easy. I pour my Branflakes freely without being sure of the carbohydrate amount and I take a little less insulin than I probably need. But it’s something. Add milk. Four sweeteners in my coffee. Take the morningdose of my anxiety medication.

2 hours later my glucose is up in the 20’s. Too much Lucozade of course, I always overreact. I feel sick. I feel guilty. I feel greedy. But I also feel weak and unable to function so I make myself press that ACT button with a correction dose.

I feel like I am free-falling, again, and even though I settle at a relatively normal number, still high by medical standards but normal for me, I feel low. This is the effect of running too high too often, whereby the body falsifies hypos when you are no way near 4 or beneath. I sit with it and resist the temptation to suspend my pump. I worry when it creeps a little further down and so set a temporary basal at a lower percentage instead. This is a compromise I have agreed with my nurse instead of suspending.

Despite the hypo today is not an awful day because I am up. I am up and out of pyjamas. Truly bad days are the ones I sleep through till 2pm, or worse 4. Half-consciously waking and trying to pull myself out yet falling back under. Into strange dreams, sweating and caught up in twisted sheets, something heavy on my chest. It can be a result of a very late night, too many sleeping tablets to knock out insomnia, or just exhaustion, such exhaustion. My weak body frustrates me. It always lets me down. It’s too much yet not enough.

Like most people my age social media is important. It is too closely linked to my identity and as someone susceptible to self-doubt I can often use it as a weapon against myself. It’s just too easy to compare to peers, acquaintances, even strangers as you hop from one profile to the next, and come up lacking. It works in two ways: you are not successful with a good job and a family, you never get invited to parties and look awkward in every photo, you are so behind the majority of people you went to school with, and you are a failure and will never be good enough. But then, you are also not as sick as them, not as skinny as her, and well they can weigh nothing and still have a life. You are not really ill when faced with the reflection of x and y and z, you don’t have a problem.

Running out of test strips so I place an order online. Three boxes at a time but they don’t last me long, I go through them too quickly, checking those measurements too often whereas others don’t test at all. It’s in response to the constant erratic swings, always moving all over the place in response to unpredictable eating habits.

Today is a work today. Just a volunteering job in a charity shop, but it's a recent step forward. I’m only a few months into the new routine, but in the recent past I was spending my days just at home doing nothing worthwhile. Monday rolled into Tuesday rolled into Wednesday. Time merely dispersed by appointments for this, that and the other dotted around (dentist, ophthalmologist, rheumatologist, diabetic clinic, diabetic nurse, eating disorder nurse, psychiatrist, podiatrist, blood tests that you are told to have every 2 weeks.) That had been my existence for longer than I can recall, stagnant, stuck, so this effort to make a difference is of real meaning. I know this deep down, but I can’t help but berate myself inside and dismiss it as nothing. How pathetic to feel accomplishment for such a minor thing!

I work with some good people, some lovely people. My boss has her own invisible illness and she gets it, another woman close to my age similarly has unstable epilepsy.  Both are so kind and I am so thankful for that. It’s a relief to not have to explain to them about how some days are just too much. Another of the senior volunteers is less compassionate, however. Last week she commented that a diabetic friend of hers had been so offensively bold as to inject insulin at the dinner table when out for a meal. She said it was unsanitary and not acceptable, that such a thing should be done in the toilet. As a result, I now feel scared to test your blood in front of her and hide your meter in your bag as you do so like it’s something to be ashamed of.

Another volunteer tells me she’s diabetic too so she understands. She says she misses sugar. Oh but she doesn’t take insulin! When did you have to start doing that? she asks me. “Oh, they’ve got the biscuits out, shame we aren’t allowed one isn’t it?! My sugar levels were soaring yesterday, up at 11 and I felt awful.” I just nod blankly.

Work is over and I am tired, it’s been a meager four hours but I am so tired. My feet hurt, tingling with neuropathic pain, burning.  My hands are cramping too, probably wonky potassium. Test my blood again, scrambling around in my handbag (a used test strip graveyard) to find my meter. Prick my finger 4 times before I get enough blood, probably dehydrated and I haven’t changed my blunt lancet in forever, my fingers are covered in little black holes. I’m high again after leaving the temporary basal on for longer than I should have but it’s an okay number for me.  I’d rather be high than low when at work and I am always moving one direction or another, I don’t seem to ever be able to stand too long on smoothed over ground. Type 1 diabetes is so very unpredictable on its own without adding an eating disorder and mental health problems into the mix. It’s frightening and some days I try to deny that I have it at all (I was like this from the start, as a child I tried to pretend I was just the same as anyone else). But the painful irony is that complacency leads to complications to the point where it will hit you smack in the face. It is impossible to ignore, an often invisible yet all-consuming and relentless condition. It can kill. You’ve lost friends and you worry every day for others you know that are trying to manage the same condition as best they can and getting through the hours. Sometimes that is all you can try to do.

I consider going straight home. It’s cold and dark and that would be the best thing to do. The rational cricket sits on my left shoulder and tries to guide me safely, but on the right shoulder my eating disorder jumps up and down like a petulant child demanding attention. I am torn in two, seams splitting down the middle. In the end the constant bickering inside my head wears me to shreds. I give in just to stop the noise and end up in familiar territory, the supermarket.

This is the usual routine and what happens most days. It is truly embarrassing and I loathe myself for the expense and the waste. It’s an intense burning shame that’s so overwhelming it mutes itself out. I wander around in a daze putting random items into my trolley, in a dissociative state which is fueled by the fact you are running on empty. I pass by the same members of staff I see all the time, some of which eye you with pity, others you fear regard you with disgust. At the check-out the number goes up and up as I am hit with a nauseous sense of regret. As the total is read out I blank it out, present my debit card, and enter my pin number. There’s no going back now, this is just what I do. I’ll be cleared out at the end of the month but have money till then from payment of disability benefits so it doesn’t matter. I am guiltily reliant on those payments and so embarrassed to be such a human drain on society.

I struggle home with heavy bags that leave red rings on my arms, people that pass regard me with some humour and I hope and plead that I will not see anyone I know. My head is down, watching the pavement and shuffling by as quickly as I can.

 I’ve bought items of food I don’t need or truly even want, lots of reduced items that you grabbed without any sense of control, ‘yellow sticker syndrome’ as I call it. It’s all trash at the end of the day. Food has become objects and devoid of any purpose beyond filling a space. But again, it is just what I do, a mindless automatic response, as normal as brushing teeth or combing my (thin, limp) hair. Without it free space is too much to cope with, too much time to think and dwell, to doubt myself and any recent things I have done or said, pick apart conversations and social interactions piece by piece with a fine tooth comb. Paranoia dictates and overwhelmed me when I am not distracting myself, usually with some kind of self-destructive act.

I sit by the radiator for a while, still in my coat and boots, freezing. My nails and lips have turned blue and my skin a murky shade of grey, the result of defunct circulation. I stay there till I am warmer and then go through the lengthy process of unpacking my groceries, simply going through the usual motions.

I’ve managed to delay engaging in behaviours till evening, which is a success. But for the next few hours I am not separate from my eating disorder. The hours dissolve as time shrinks too quickly. Any regard for my blood sugar levels takes a back seat, and as always I will pay for it.

Later on, and my meter reads off the scale. I feel it, in your bones, aching. I am good for nothing. A rag doll out of stuffing, flailing limbs and a mind clouded over, with concentration shot. I clumsily try to clear up mess, spilling and dropping things. I take a correction bolus again, disconnecting from the process so I won't have time to reconsider.

An hour later and I’m still off the scale which is above 33.3mmol. I have ketones which register as significant on your meter and feel horrendous. I fear a pump malfunction which would leave me drained of any background reserves of insulin. Blips like these keep occurring as the only place I can place cannulas is on my stomach as I supposedly lack subcutaneous fat elsewhere (your eating disorder whispers this is a lie). Hence the overused area has become sore and tender and new needle insertions keep falling. The lumps left behind make me feel so self-conscious and whoever said fat is not a feeling never lived in my skin.

I go through the process of changing the cannula, and the insulin reservoir just in case. I can do this blindly now. At first using the pump was a huge struggle and in the first few weeks all I wanted to do was throw the damn thing out the window. But persevering paid off. Recently I’ve had subtle threats that It could be taken away as my HBA1C is still in the red zone and hasn’t decreased by the amount the NHS number crunchers would like to see. But your nurse has fought for you, she says you shouldn’t be discriminated against because you have an eating disorder and can’t follow a perfect regime. She knows how the pump has generally improved your quality of life and kept you out of danger and sees the worth in that. I feel grateful to have her, as previously I’d been blankly cast aside for pump consideration.

Fortunately, the new cannula seems to work and my sugar levels start to reflect as much. For the next couple of hours I feel like I am in free-fall despite the fact that I am not dropping by huge amounts, but it’s an uncomfortable feeling, a sky-dive without a harness, a fear of where I might end up.

It’s 2am. and I need sleep. I try to wind down from my behaviours, tidy up a little and wash up what feels like a mountain of dishes.  I’ve been in my pyjamas since I got home. Time for the medication I take at night to allow enough time for absorption. My stomach cannot digest tablets so all are in capsule form. Anti-depressant, check, anti-anxiety med, check, Omeprazole for acid reflux, check, sleeping pill, check.  I’m also prescribed calcium with vitamin D for osteoporosis and an iron tablet but struggle to take them as you are advised, it just seems like an act of self-care too much to accept. Additionally, I had been taking Ramipril to try and protect my eyes and kidneys from damage but they were causing too much of a drop in my already low blood pressure. It had been recommended after a retinopathy diagnosis which has been followed by the two sessions of laser surgery.

I crawl into bed and try to read for a bit but my mind keeps shifting elsewhere and I keep having to go back to the start of paragraphs after realising I’ve not a clue what they said. I also permit myself to have a snack with the intention of preventing another night time hypo.

Turn out the light and wait for sleep, the only prolonged periods of reprieve I have from myself. Tomorrow is a new day, though, tomorrow I’ll do better, be better. Tomorrow, tomorrow, tomorrow...See, it was never supposed to be this way, you never intended it to be like this. But wishing you could rewind the clock a decade or two is futile. Today, I survived.