Early Intervention - NEDAW musings

Today is officially the last day of Eating Disorder Awareness Week. Before it passes over I feel the need to talk about the focus for 2017 as set by B-eat which is Early Intervention.


The topic is a difficult one for me, most of all because any focus on early intervention felt very lacking all those years ago when I became ill. It was more of case of waiting for sufferers of eating disorders to reach a point of acute danger before offering any substantial help, sometimes pushing so far that there was no in between from being given no care to then suddenly passing a line whereby you are an emergency  case. Weight was always the quantifier, and so often it felt like you had to lose more in order to get any kind of recognition or treatment. Messed up is having to push yourself to get worse just so you can get better.


This is still happening. But I have also noticed progress, with some being taken seriously at an early stage, where the outcome of recovery is more likely. The sooner the better, as more quality of life can be preserved. Unfortunately despite the change of direction funds are still being squeezed, with the NHS budget out of breath and gasping. Mental health beds are continuing to be cut, and so it’s still a struggle for many treatment facilities to take anyone beyond those at great medical risk. It’s further down that some head-way can be made I feel, using outpatient and day patient resources to stop further admissions down the line if at all possible.


I can’t stress how much those with diabetes and eating disorders need early intervention. The danger that someone omitting insulin can be in despite presenting as a normal weight is immediately life threatening. This HAS to be recognised. So often I hear that anorexia has the highest mortality rate out of any psychiatric condition, yet I’d take a wager that ED-DMT1, particularly involving insulin omission would overtake if it had an official diagnosis and the appropriate studies and statistics were available.


The need for early intervention AND timely recognition of ‘diabulimia’ symptoms alongside understanding of its seriousness must go hand in hand. Recently updated NICE guidelines are definitely a step towards that as type 1 diabetics are now listed as in need of urgent attention under eating disorder care guidelines.  If untreated the long term complications of ED-DMT1 can be so devastating, I won’t list them as we all know, the end of the line being loss of sight of limbs.


I do wonder where I might be now if I’d had help earlier. It’s hard not to dwell on that somewhat, 15 or so years down the line. I am definitely not the only one either. 


They have two patients with type 1 diabetes in the day-patient program I attended 3 years back now. They are getting trained up on the right way to deal with them, the NICE guidelines nipping at ankles with the worry they could get into trouble. This is the same unit that would hear nothing about that kind of specialist input while I was there. They told me they did not need training, and I felt like they were collectively sighing whenever I spoke of diabetes. I came out of that program far worse than when I went in. So yeah, that’s difficult to swallow. 


But I’m trying to let it go. 


Looking at younger people that are so vulnerable these days makes my heart sink. Even more so those I spot dabbling in eating disorder behaviours. I want to shake them or hug them and tell them to stop, but of course that would sound completely patronising and it’s not my place. I worry about the increasing coverage of diabulimia in the news being used as the catalyst for ‘ah maybe I will try that?’ thinking, but that’s the underside of creating awareness. Sensationalist reporting that focuses on weight and pounds lost certainly have a lot to answer for there, EDAW has once again shown that the media will never learn.


The emphasis needs to be on saving those years, months, hours that can be eaten away by an eating disorder. Of the lives that have been lost because help has come too late. 


Early intervention. To those who can act, make it mean something, please.

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.

What Not To Say To Someone With Type 1 Diabetes and/or an Eating Disorder

Knowing how to talk to someone struggling with a serious mental illness such as an eating disorder, or even an individual with just type 1 diabetes alone can be a minefield for family and friends. Both conditions are regarded as invisible illnesses that are often misunderstood. Innocent comments can quite easily be taken the wrong way entirely. My eating disorder will reframe and misconstrue anything it can potentially collude with and use against me. You somehow become psychic and can read minds. It’s often the case that I know I am being duped but I’ll gladly fall head first down that rabbit hole.

So that said, these are gentle suggestions of what not to say to someone with an eating disorder, type 1 diabetes or a comorbidity of the two. Mostly those flippant remarks that that can’t be caught until they are said out loud and then realisation hits. But sometimes it can be ignorance, it can be frustration and anger and shock tactics, none of which work but all of which are born from desperation.

I hope this might be of use to individuals in a supporting position for someone who is ill. Often the way our minds twist things can make absolutely no sense. These pointers are devised through not just my own experience but that of other eating disorder sufferers I know of, voices from some of my close friends, some that I have met in treatment settings, and also members of the diabulimia online Facebook community.

Please feel free to add any others you think are important via our social media pages and share this with your spouse, parents, siblings, your best friend or anyone you think might find them to be of use. My personal commentary is in bold

1.   Try to avoid diet talk. Yes, sadly it’s normal. It’s messed up but it is inescapable. Women in coffee shops opting for skinny milk because they think they need to lose a few pounds or gaggles of young girls asking “do I look fat in this?” as they stand in front of the changing room mirrors. Gutting, but that is the reality of it. Still, making an effort not to talk directly about weight loss and diets to someone with an eating disorder is important. We have enough of that talk going on inside our heads to contend with. Especially don’t ask us for diet tips. Actually, this is never okay, to anyone, as you never know the reasons behind weight loss, or gain for that matter

2.   Further to this, a bit of a difficult one that mostly applies in early recovery when an eating disorder sufferer is struggling to accept their body and the guilt that may come alongside eating and accepting insulin. “You look so much better/healthier/brighter/your face is so much fuller!” Okay so we might know these are intended as compliments, they show compassion and the fact that someone may be so relieved to see you looking better. But again, someone with an eating disorder can manipulate those words automatically. We might hear “You look fat”, “you must not be ill anymore.”  I also know that these kinds of things can be said when actually someone is looking horrendous, as some kind of way to displace that awkwardness and reassure when someone appears to be evidently struggling.  “But you don’t LOOK sick” is another jarring one that can often prompt the automatic thought of Oh well I’ll show you what sick is.”  Outside appearance can also be deceptive; a diabulimic may present as okay on the outside yet be in acute DKA and in need or emergency assistance. Ultimately, any kind of commentary relating to appearance around someone with an eating disorder should be vetoed wherever possible. Positive or negative, we can take it the wrong way.

3.     To a type 1 diabetic with an eating disorder: “Oh wow I could NEVER inject myself.” See the thing is, we sort of die if we don’t and we are trying to avoid that option. “My uncle/great grandfather is diabetic too but he doesn’t have to jab himself.” Yeah, wrong type. Please read a book if you care about me. “Did you become diabetic from eating too much sugar?” “Are you allowed to eat that?!” Just NOPE NOPE NOPE. Especially if you know someone also has an eating disorder. Just NOPE. Educate yourself, please.

4.   “You talk about your illness too much; you need to not be so obsessed.” Funny that, see imagine you have this thing on your back every second of every single day, it’s sort of hard to ignore. Don’t stigmatise something that many people with diabetes and eating disorders have struggled to accept and acknowledge. Let us talk, it helps and is far better than denying it exists. Living with this constantly gives us the right to moan and rant and shout if we damn want to.

5.  “Wow that’s a huge dinner.” “Ooh that looks like a nice treat!” “Glad to see your appetite is back” I have to say, this often seems to be a dad thing. A stereotypical male that is clueless about nutritional content and thinks the four pork pies he just finished were fewer calories than your sparse meal. We might have a huge plate of salad, yeah lots of leaves, some protein. Or okay we could actually be binging, but we are cringing inside already and it’s too painful acknowledge what it looks like through someone else’s eyes. As with the point about body comments, just refrain from commenting on our food unless we specifically ask for your help or guidance, that has to come from us. Don’t be the food police, as it can cause us to want to isolate even more and protect the disorder, as twisted as that sounds.

6.    “Please eat, for me? What did I do wrong? Why are you doing this to me?” This one is a hard one, often from a parent that feels helpless. Personally, the hardest part of being ill has been the hurt it has caused to my loved ones. But it is not about you. Regardless of any relevant cause factors, it comes down to the way WE react. To suggest we would do this to ourselves to spite another person can be painful when most people with eating disorders only want to hurt themselves. It is a mental disorder and rational thought is completely compromised. It can be so powerful that you just don’t realise it’s pulling the strings, and that the control you believed you had was actually your eating disorder playing puppet master.

7.   “You just need a good burger/sandwich/slice of cake in you!" (Worse if followed by ‘love’ ‘dear’ ‘darling’) Clearly unhelpful. Eating disorders are not just stubbornness or forgetting to have breakfast in the morning. Often someone that is struggling a lot will find it a huge challenge to eat in public, and that’s not to mention the effort someone with type 1 diabetes needs to do to determine carbohydrates and insulin doses. Sometimes it doesn’t feel worth it, but we shouldn’t have to put on a show to satisfy someone else if it results in us becoming distressed. Let us be.

 8.   “If you think you are fat you must think I am obese!Again, anorexia, bulimia, BED, and ED-DMT1/Diabulimia, are all specific to the sufferer. Body dysmorphia is very commonly linked and an eating disorder sufferer may see a different image in the mirror to what others around them can see. We are the exception to the rule. Additionally with Diabulimia the fact that eating disorders are NOT about weight is even clearer HBA1C levels being a far more accurate risk indicator. People with Diabulimia will often have huge fluctuations in weight as they manipulate insulin levels and so this cannot be used to determine how well or unwell someone is,

9. “I wish I could lose weight that quickly!” “I wish I was as thin as you” “god what’s your secret?!” Ha, you really want to know? All completely inappropriate if someone doesn’t know the circumstances being someone’s weight or behaviours. Another that links to the first is “god I’d love to be able to eat anything I wanted and lose weight.” Oh well you can gladly have my diabetes and diabulimia if you want! No refund policy though. Take the ketone breath, fluttering heart and constant thrush with you too.

10.  Being told of the damage we are doing to ourselves is simply patronising. We aren’t stupid and nothing will shock us. We know all about the blindness and amputation risk thanks. It’s not lack of intelligence that causes a person with an eating disorder to neglect their health needs. Similarly: “This could kill you, you know?” We sort of do but right now we are more focused on being thin and/or self-destructing.

11.  Last but not least and in my opinion the most grating of them all “You do realise that men like a bit of meat on their bones! Righhht, because I am doing this to myself to snare a man, damn got that on wrong then. Again, ketone breath isn’t much of a turn on. Oh better start eating again if I want to be pretty for boys. I don’t quite understand how this one seems to crop up so often. EATING DISORDERS ARE NOT ABOUT VANITY. If they were then I am definitely going about it the wrong way as I look like crap. Maybe I’ll just tell Mum (see this one seems like a mum thing) that oh well, that’s it then, may as well become a lesbian and join the circus instead.

By Claire Kearns.

Exciting Innovations in the World of Diabetes Technology

Research and scientific discovery is constantly evolving in relation to diabetes, including exciting technological innovations. Through recent years the use of insulin pumps and continuous glucose monitors has become more and more common, with a range of different models now readily available. Future advancements are coming, with hope relying heavily on news of the artificial pancreas, which may really change the landscape of diabetes care beyond recognition. Gone are the days of large bulky blood testing machines and insulin drawn from little glass bottles by one use needles.

An insulin pump is a device that is worn on a type-1-diabetic patient’s body. Suppliers of insulin pumps in the UK are Medtronic, Dexcom, Abbot and Animas. A pump provides a constant trickle of insulin through a cannula which is inserted under the skin and can receive blood glucose results from a linked meter via a Bluetooth sensor. In reaction it then automatically calculates the amount of insulin units needed to correct a high reading if requires, or to cover the amount of carbohydrate in a snack or meal. Pump settings can be adjusted to personal rates of insulin sensitivity and target ranges as well as be used to track progress and patterns in blood sugar control.

An insulin pump can also be linked to a Continuous Glucose Monitor (CGM). This is a small sensor which is placed on the skin and used to track blood glucose at regular intervals. A CGM can work alongside an insulin pump to predict and provide the means for a type 1 diabetic to administer the appropriate insulin doses required. The most innovative product on the market at the moment would appear to be the FreeStyle Libre if hype and demand is anything to go by. Comparing the Libre to a CGM, the charity INPUT explains “Both measure the glucose in interstitial fluid but Libre could be better described as CGR – continuous glucose recording – with the ability to read that record each time the sensor is ‘flashed’. It does not transmit, and cannot notify the user of adverse events as they happen.” At present however, a Freestyle LIbre cannot be funded on the NHS and the initial outlay as well as pay out for sensors can become costly.

Neither a pump nor CGM take away the need for someone with type 1 diabetes to be proactive and in charge of their own medical needs. Both devices can make living with diabetes more manageable but they are certainly no easy cure and can also be very difficult to get to grips with. Some type 1 diabetics have described the process as close to the experience of diagnosis all over again, and having to learn from the beginning.

Currently, NHS funding and availability for these types of technologies is unfortunately regionally dependent. This failure was addressed in the All-Parliamentary-Group’s recent report Levelling Up: Tackling Regional Variations in Diabetes Care which explored ways in which such post-code lotteries can be dissolved. Additionally, recently published NICE guidelines for children and young people as well as their recommendations for adult indicate the crucial need for type 1 diabetics to have access to such technology to adequately treat their condition.

INPUT are a UK based organisation with a 'mission to support people in accessing diabetes technology.' On the work they do, Chief Advisor Melissa Holloway, explains:

“Many people who contact us are interested in a pump or continuous glucose monitoring, or Libre, and want to talk about what might suit their needs best. Some people have been told they aren't suitable for a pump and they want to go back to their team with some further points for discussion. Others have been recommended a pump and want to hear from people with first-hand experience.”

For someone suffering from ED-DMT1 or Diabulimia a pump or CGM may be beneficial, but the process needs to be carefully considered and comes with a high degree of risk. A comprehensive breakdown of the possible advantages and disadvantages that should be acknowledged in evaluating such a situation can be found in our members' section as part of January’s premium content. We also provide examples from two individuals that had differing good and bad experiences of using a pump while also managing an eating disorder.

On the important considerations required to determine pump and CGM suitability for someone with ED-DMT1, Melissa from INPUT said: "There are cases where a pump has helped someone with diabulimia, but there are also cases where someone has disconnected their pump and purposely missed insulin to lose weight.

"If someone isn't checking their glucose level to begin with, could they get into a medical crisis from not calibrating a CGM?" A CGM can't help someone keep better control if they turn off the high alarms; would someone who is prone to under-dosing actually find it more stressful to have constant data? Can Libre lead to better outcomes even when someone isn't regularly bolusing for meals? This is an area where there are lots of individual variables and unanswered research questions.”
 

 

Seeds can grow

Seeds can grow and flourish.

I refuse to be a fucking shrub, alright?! (Subtle nod to the film Girl, Interrupted. Had to.)

SEED stands for ‘severe and enduring eating disorder. I only actually heard them refer to me as such in the past year or so, and was taken aback to have it used so candidly. By ‘them’ I mean my current eating disorder service providers.

A SEED patient is classed as someone with an eating disorder that has lasted beyond 7 years. Why 7 exactly I do not know, but that’s the line they draw. It feels like a line between worthy and not worthy of help. Like you suddenly fall through cracks into shadows, case aside, hopeless.

I understand that it is a way of being realistic about future expectations, of making it okay to only aim for stability. I agree that someone with a long history of disordered eating should be regarded differently to someone with say a year of anorexic or bulimic behaviours, and expecting big changes is too much. But I don’t think anyone should ever be labelled as unable to ever achieve recovery. It’s disheartening. It’s an opinion that colludes quite easily with the thoughts inside your head that tell you that you are worthless and good for nothing.

But boxes are for objects, not people. Language and attitude is key, because it’s not just that word ‘SEED’, but the way I have been made to feel. Disregarded. Left on a dusty shelf with rag dolls and unwanted stuffed animals.

12 weeks of CBT just last year was of help to me. I managed to make behavioural changes and start to tackle my negative thinking patterns. Yet because my weight chart didn’t show a steady line upwards from week to week they concluded it unsuccessful. My GP stressed that more therapy would be beneficial but they just refused to offer anything further. Now I just see a nurse every few weeks and it seems the only objective is to weigh me (a trigger every time as I try to stay away from scales these days) and make sure I am still alive. I actually last had an appointment around 2 months ago as have been waiting for a new appointment in the post, so really that shows how much I am of concern.

Of course I also see that early intervention is being implemented a lot more than it was in the past. This is a really good thing, and indeed best use of the light NHS money pot. It just means that for those of us that are of the old ‘system’, with the approach whereby not much help would be available until you reached an acute stage of crisis, when suddenly it would be all sirens flashing, it’s tough. We drew the short straws, pretty much. It stings.

Today I have seen how the approach can be different, though, it can be better. I attended my first session at Kings College Hospital which now has a specialist team that treats diabetics with psychological struggles, particularly eating disorders. My GP made the referral and I was so relieved that it passed by the commissioners without any trouble. I have come away from this appointment with renewed hope.

Therapy was very much on the agenda. Some med changes. Most of all, understanding. No weighing, just listening.

We need more places like Kings, desperately. An eating disorder alongside diabetes must be tackled differently from more typical eating disorders. Losing trust in clinicians is inevitable when they continuously get the facts about your chronic condition completely wrong. Some of the things doctors have told me about type 1 diabetes are just laughable. Of course, we know this illness inside and out, we are the experts, more so than some psychologist or psychiatrist that did a few modules on diabetes in medical school.

We must keep on pushing for more specialist pathways like that at Kings, more open doors that are widespread. Nobody should have to feel beyond hope and that they do not have the support to try and make changes. Small changes are so important.

An eating disorder is not living it is simply existing. Just like a seed, contained, without water it will remain as it is. But just a little sprinkling of rain can be all it needs to begin emerging and uncurling itself with green stalks and sometimes, eventually, rosebuds. Let’s see.

By Claire Kearns.

Trying to be normal in an abnormal world

Most people experience some kind of anti-climax after the turn of the New Year. After all the wrapping paper has been cleared away along with the party streamers, it’s back to work or study, bills and the shuffle of everyday life. For those grappling with eating disorders, it can bring a sense of huge relief that a very stressful period is over with for another year.

But then comes the onslaught, my personal most-loathed part of January: the sudden excessive emphasis on diet, fitness and “getting rid of those extra Christmas pounds!”

On most days it can be difficult trying to navigate through a twisted tunnel of mixed messages when you suffer from an eating disorder, with or even without the complicated addition of type 1 diabetes. You are told by your doctors and by the part of you that wants to be healthy that you need to eat. You need to take insulin. To get better you need to refuel, replenish and relax.  But the environment around you, especially during January, suggests the opposite.

Media and society can easily push you back into a disordered mindset you are trying to escape from. It’s tough, pushing back and in particular rejecting the ideas that come from voices around you. It can seem like everyone is talking about going on some kind of diet, joking about how much they eat over Christmas. Even friends who don’t mean to trigger are suddenly opting for skinny lattes whereas in December they’d have ordered a hot chocolate with cream. Comments overheard all around “oh I have to get back on the treadmill!” “I need to get back into my old clothes!”

You have to try to keep reminding yourself that to recover you need to regain additional strength. Reserves are low, and whether underweight or not someone that has been restricting food or insulin will have a starved mind and depleted body. Low fat or calorie controlled might be unnecessary for someone of a normal weight without an eating disorder, but for someone with one this can be harmful without that stable level to begin from. Additionally, for someone with type 1 diabetes many of the eating plans that are promoted can be completely impractical.

An important message to note is that it has been proved that New Year’s resolutions rarely stick. Many individuals will give up on new fitness plans a few weeks in and may lose a few pounds but then gain a couple back. It is often a short-lived phase yet for someone with an eating disorder it can be a deep rooted obsession. It can kill us.

I just try to keep my head down; sometimes it is all you can do. Divert my eyes from the screaming front pages of trashy magazines and stupid television adverts. Remind myself that certain sources of media are only interested in making money and don’t care about potentially harmful messages they might be construing.

Repeat if necessary: I don’t need a new television package, sofa, dining room table set or to sponsor a child in Africa. I do not need to try out the 5:2 plan, join the gym or abandon eating completely for shakes or juicing.

I wish all of you that are struggling out there and reading this a happy and safe 2017. Please, try to be kind to yourselves.

 

By Claire Kearns.

DWED 2016 Holiday Card Exchange

This year DWED is again running a holiday card exchange. This is open to anyone from the UK* that is currently struggling with type 1 diabetes and an eating disorder or has done so in the past.

If you'd like to spread a little Christmas cheer and put a smile on someone's face while perhaps offering some words of comfort then please do sign up! In turn, you shall receive a card of your own.  You may wish to include your favourite quote or piece of advice for surviving the holiday season, and cards can be anything you like, from handmade to shop bought, no great expense required. 

The only condition is that if you do agree to take part and then later need to drop out you inform us asap (claire@dwed.org.uk) so we can arrange a different pairing for your intended recipient. We understand completely that issues may arise, especially when precarious health is concerned, but we ask this so that hopefully nobody will lose out.

The deadline for signing up is just 5 days away, 10th December,* and we ask that cards be posted as soon as possible, keeping in mind that the last posting date for 1st class in the UK is the 22nd December. You should receive a confirmation with the details of who you need to send your card out to soon after the 10th.*

10/12/16: Extending sign up deadline by 2 days till 12th December. 

*11/12/16: We are joining forces with US charity the Diabulimia Helpline to widen the scope of our holiday exchange. This means you MAY be given the address of a recipient based internationally. If you'd specifically prefer to only post a card within the UK then this is perfectly fine and can be arranged, just let us know at claire@dwed.org.uk. 

12/12/16: Sign up for the card exchange is now closed. Those that have responded will in due course receive the name and address of the person they should send their card to. Thank you all and happy holidays!

 

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.

Release of new report concerning regional variations in diabetes care

Last Wednesday The All Party Parliamentary Group (APPG) for Diabetes launched its new report ‘Levelling up: Tackling Variation in Diabetes Care’ at an event held at the House of Commons.

The All Party parliamentary group describes itself as ‘A nonpartisan cross-party interest group of UK parliamentarians who have a shared interest of raising the profile of diabetes, its prevention and improving the quality of treatment and care for people living with diabetes.’ Attendees of the evening were welcomed by the chairman of the APPG Rt Hon Keith Vaz MP who urged for a “fundamental and irreversible policy shift” and asserted the need for a revolution of thinking around diabetes care. His introduction was followed by speakers Rt Hon Jeremy Hunt MP, patient voice Lauren Proctor and diabetes specialist nurse Ruth Miller.

Conclusions within the report were reached after a series of meetings held over the last year in which the APPG has heard from people living with diabetes as well as health care professionals and leading Clinical Commissioning Groups. They have provided testimonials relating to inconsistent quality for the treatment of diabetes and associated medical needs. Examples were put forward concerning good and bad practice and areas in need of improvement. The report was researched and funded by charities Diabetes UK and JDRF.

In the lead up to the publication of ‘Levelling up’ the government has announced the provision of approximately £40million per year to be used towards the improvement of nationwide care for type 1 and type 2 diabetes. This will be extremely useful in facilitating implementation of the report’s recommendations and improving nationwide diabetes services. DWED particularly hopes that in light of this financial boost, standards of psychological support will be moved to further to the front of the agenda.

There are three key areas to the report. These are ‘high-quality conversations with the right healthcare professionals’, ‘technology’, and ‘support for living with diabetes’ which focuses on structured education most of all while briefly touching on the lack of consideration for emotional wellbeing. Each section presents specific evidence with regards to gaps in the variation of care services and explores ‘What the NHS is doing’ successfully in some areas of the country. The aim is to use these models as a framework from which to learn from, build upon and implement across the board to reduce the current NHS postcode lottery.

‘Levelling up: Tackling Variations in Diabetes Care’ can be downloaded from the APPG website. Alternatively, for a full breakdown of and review of the report and how it may be of use to someone with diabetes alongside an eating disorder, DWED provides a comprehensive document as part of Novembers premium level membership package. To subscribe for just £3 per month please do so via: http://dwed.org.uk/membership-options.

By Claire Kearns

Butterflies - a poem of memorial

I wrote this poem in 2013 for a DWED member that passed away, but in also representative of all those we had lost. I was recently was reminded of it as it resurfaced as a reminder on facebook. It was rushed and is somewhat cliched, but seemed fitting at the time, and definitely fitting to her. I read out at a memorial service that took place in London that year, among friends, including another we have also since grieved. It scares me so much that this is continuing to happen to those we love, to the precious ones. It's not fair.

Butterflies
------------

A mirrored disco ball turns, flickers, and bursts, 
In vibrant purples, deep pinks and brilliant green,

Illuminating, we saw pieces they did not see, 
Pieces she could not see, 

A broken mirror, shattered by distortion, patched together with sticky-tape, 
Yet under daylight: a beautiful mosaic, 
Shimmering and shining.

Talents trampled down in killer heels, 
A hatred so harsh and toxic it burned,
Desperate Bambi eyes, searching for good, 
That was already so obvious to us, 
The shy caterpillar, hiding cocooned, 
Then uncurling, with a mischievous smile, 
Lit with undeniable sass and glitter.

And she was of colours and butterflies. 
And she dances, shaking up the air. 
Beside us, never forgotten.

By Claire Kearns. 

 

World Diabetes Day 2016 - reflections

So it’s past midnight in the UK, but not yet worldwide so I can publish this in recognition of World Diabetes Day.

I didn’t intend on saying anything, but right now feel the need. Still, it’s easy to feel lost among a sea of voices on any of these types of awareness days. Often it feels like preaching to the choir, with those that need to take notice still standing with turned backs.

I am feeling somewhat sad, in a state of grief I guess. For my past and what had become.

I only recently found out the exact date of my type 1 diabetes diagnosis, 3 days before my 9th birthday. I’ve also been thinking about the new Quality standard guidelines issued by NICE for children and young people with diabetes. It all feels quite bittersweet.

I remember being told by my endocrinologist that I was close to becoming overweight at a clinic appointment, that I needed to ‘be careful’. The next time I saw him he congratulated me on a loss in pounds that had been starved away with ketones. I recall my diabetic nurse flying off the handle and taking it personally that I had been pulling the wool over her eyes with regards to my blood sugar readings. Of course my HBA1C told the truth. There was no understanding of the fact that I was not doing that to spite her, but only to hurt myself. Overall, the failing in any psychological support was all too clear.

I wonder, if I’d have been recognised earlier as vulnerable or if my clinicians had been familiar with those NICE guidelines back then, would it all have turned out so differently?

Perhaps. But ultimately, wondering doesn’t help too much. I am so pleased that the link eating disorders and diabetes is becoming more widely addressed with psychological issues considered as part of the wider clinical package. It’s a relief knowing that things are changing, slowly. 

We must keep talking. Every person that becomes more knowledgeable about ED-DMT1 and Diabulimia is another victory.

Happy World Diabetes day to all that continue to grapple with this illness day in and out, with or without an eating disorder. As another year rolls by we are still surviving, and that is worth celebrating. You are not alone, and DWED is always here listening. Without you our purpose is mute. Hold on.

By Claire Kearns.

Specialist Treatment Pathway for Eating Disorders in Northern Ireland

DWED welcomes news that Northern Ireland’s Health and Social Care Board (HSCB) and Public Health Agency have introduced a specialist treatment pathway from those suffering from eating disorders. Significantly, acknowledgement has also been given to the high risk co-morbidity of diabetes.

The Eating Disorder Care Pathway provides access to a Guide for People Using Eating Disorders Services. This publication has been written by, and for, people who have experience of existing treatment, as well as their family members. The guide outlines what patients can expect from the referral process as well as including information on self-care and useful contact details. The pathway has also been developed with reference to the NICE clinical guidelines

An information leaflet for GPs, to support recognition of the signs of eating disorders and encourage a proactive approach is also now available. This includes a brief assessment tool for GP’s to identify problematic behaviour as soon as possible. In cases of ED-DMT1 or Diabulimia it is particularly crucial that prevention is introduced at the earliest stage to avoid devastating outcomes and complications. If a type-1-diabetic is omitting insulin they can be hours away from fatality even if not appearing obviously unwell and it paramount that there is an understanding of this by clinicians.

The guide identifies those with diabetes and eating disorders to be in a category of individuals in need of urgent appointments. It specifies: If it is agreed that you need to be seen urgently you will be offered an appointment within 5 working days.” DWED regards this as particularly encouraging and hopes that it will be of benefit to our members in Northern Ireland that are in need of help.

Welcoming the introduction of the guide, Ann McCann from the Eating Disorder Association NI said: “The care pathway guide for service users and family members will help them understand that good treatment is available here in Northern Ireland, and signpost them to organisations that can provide information and support for them and their loved one throughout treatment and beyond.”

Minister of Health, Michelle O’Neill, described the new pathway as “very positive.” She said: “I’m delighted that the care pathway recognises that mental health care should have parity with physical health care... In December, I will be receiving a report which will outline how we might wish to develop eating disorder services in the future and I will also consider the potential benefit from an all-Ireland approach in terms of pooling resources and sharing expertise on the island.”

All leaflets concerning The Regional Care Pathway for the Treatment of Eating Disorders can be downloaded via the Health and Social Care Board website at www.hscboard.hscni.net/our-work/social-care-and-children/mental-health.

 

By Claire Kearns.

Don't read below the line

There’s been a lot of coverage relating to diabulimia in the press just recently. Certainly in light of how largely disregarded the condition has been until now, despite its staggering prevalence. It’s great to see such acknowledgment, from the BBC article that brought a tide of traffic to DWED and the Indy’s comprehensive piece, both of which used quotes from our director and founder Jacquelline Allan. That girl knows her stuff and it’s so crucial to be getting accurate information out there, especially after numerous past occurrences of grossly sensationalist reporting . The death of Lisa Day has prompted some of this. It’s disappointing that such a tragedy is the one thing that brings forth attention, when all our continuous shouting merely falls on deaf ears. But despite that I know her family are determined to bring awareness to this fatal condition that caused the loss of their beloved sister and daughter. In turn, the newly opened service at Kings College London which will treat type 1 and 2 diabetics with eating disorders is hugely positive news which has placed diabulimia under a spotlight.

However, traffic can result in road collisions. By this I mean loud voices of the misinformed and uncompassionate. Those people that will skim a story but have already formed a negative judgement from the headline. A judgement that they want to push onto anyone they can, but most of all those that they see with a spot of vulnerability.

The best lesson is to never, ever read below the line. But it’s that self-sabotaging nature in me, and so I need this space to rant a little. Even if I fear I may just be preaching to the choir.

Eating disorders are not a result of stupidity or ignorance. On the contrary ,it is a proven scientific fact concluded through various different studies that the majority of sufferers actually have a high degree of intelligence. I have never met anyone with an eating disorder that is not smart, some to the point of intimidation. Instead, I have met so many talented people through treatment experiences and online support communities. These people can be great scientists, artists, writers.  

It is often the case that people that develop eating disorders actually think too much. Minds full of numbers and weights and ratios are not idle. Instead, they are over-occupied, fixated, obsessed. If you bring type 1 diabetes into the mix, the need to be clued up on nutrition and the mechanisms of your body is pertinent. You do not have the option to avert focus from any of that, and diagnosis can be a hugely overwhelming time. Furthermore, with diabulimia, insulin manipulation is a not a simple equation.

Manipulation is often the fuel of an eating disorder, it feeds and sustains it. You can become someone you do not recognise, and do things you would never dream of as a healthy person with a healthy mind. Deception is never a game for the idiotic, it is clever and sneaky. You learn to lie with conviction and run rings around those around you. You become the master of trickery. All the while you are blind to the fact that a mental illness is pulling at the puppet strings attached to your limp feet, legs and arms.

It’s not a choice. It is not a decision made with any rationality. Someone with an eating disorder and diabetes is not choosing to not take their insulin just because they can’t be bothered or want to throw their toys out the pram (in this case syringes and test strips!) They are not just being ungrateful for that crucial life source which is now so luckily available. The discovery of injectable insulin to treat diabetics is meaningful to everyone that has to rely on it to survive. But with a mental illness, with an eating disorder, survival is not a priority. It’s also not just “another label” that can be lumped in with anorexia and bulimia when it has characteristics that require treatment to be specifically tailored.

The roots of any eating disorder are deep and heavy. It isn’t an illness that just sits in a shallow pool on the surface but it is all consuming river. It is not vanity, or selfishness, or a fad. It is not just about appearance. Everyone that suffers from an eating disorder will have their own stories to tell and different reasons as to why they developed one. Often these psychological origins can be tangled and extremely difficult for the sufferer to try and unravel. 

“All diabetics have to do to stay on top of their health is take insulin” read one comment beneath a recent article on diabulimia. Firstly, this shows a huge disregard for the impact of type 1 diabetes as it is about so very much more than that. Secondly, again, someone with diabulimia isn’t just a diabetic, they also have a mental health disorder, meaning they do not think logically or the way that any mentally well diabetic usually would.

Ultimately, all I ask is that if you don’t know about a condition such as this, if it’s something that seems beyond your scope of understanding, please do not automatically judge. Do not assume. Instead, listen, try to learn, have some empathy. You do not know the influence that harsh, unkind words can have.  We are not all delicate flowers and Dave or John from Manchester and Bognor Regis aren’t necessarily going to bring forth tears. Still, ignorance spreads like wildfire, and if someone we care about adopts a similar view, well yeah, that can hurt.

I’ll end this with a suggestion: Just don’t read below the line, especially if it’s The Daily Fail online.

 

By Claire Kearns.

 

This Months Membership Package

DWED Public Members: This month we talked to 3 patients about their experience on Eating Disorder wards. You can download these interviews as podcasts. We also release a comprehensive guide covering all NICE guidance regarding Type 1 Diabetes that we feel are relevant to us - Make sure that your team are following the recommendations! We also offer the service of approaching your teams with information and training offers.

Sign up Now!

DWED HCP Members: We also supply the podcasts of those who have experienced Inpatient care for their eating disorders. Director Jacq interviews Dr Pamela MacDonald on her recent research at the Institute of Psychiatry, looking at both Health Care Practitioner and Patient attitudes towards Diabulimia. We also highlight changes to the NICE Quality Standards, recently released and our interpretation of their use for our demographic and offer a new Linked in group for you to discuss T1 Eating Disorders with like minded professionals. We also offer a £50 discount on Training for DWED professional members and round up relevant research for you in a handy downloadable

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Updated NICE Quality Standards for Children and Young People with Diabetes

Earlier this month the National Institute for Health and Care Excellence (NICE) released a set of new quality standards containing details that should become a major influence in addressing the current lack of care available to children and young people suffering from diabetes and a related eating disorder.

Their quality standards publication for 14th July provides recommendations regarding the diagnosis and management of type one and two diabetes for those under the age of 18. It also contains some important guidelines in relation to psychological and emotional health which DWED hopes to have fed into. We are so pleased to finally see this being implemented by NICE and duly hope it will bring about change that is long overdue.

Conclusions in the report were reached by local data collection and the 2013–14 National Paediatric Diabetes Audit. Results unsurprisingly concluded that individuals with diabetes were more at risk of mental health problems including depression, anxiety and eating disorders. This can be due to a number of factors such as alienation from peers, ignorance from the public and media, bullying and the fear of being different.

Eating disorder behaviours can often begin at an early age and although diabulimia may develop later, anorexic or bulimic tendencies are shown to start alarmingly early. This may often lead to the process of insulin omission in a type one diabetic. There is undoubtedly a link between body image concerns and the introduction of insulin in adolescents, not to mention the focus on food that becomes necessary to ensure steady glucose control.

The quality standard suggests that best practice would mean children and young people with type 1 or type 2 diabetes would have access to mental health specialists that understand the types of problems people with diabetes may have.  It specifies that a mental health professional should be one of the main members of the diabetes team.

Of course early intervention for all eating disorder cases is hugely significant as the sooner that an individual receives help the more likely they are to recover. Physical complications are also less probable, and with diabetes this can be crucial in preserving long-term quality of life. Devastating consequences of ED-DMT1 and diabulimia can be nerve damage, sight loss, kidney impairment as well as difficulties with nutritional absorption and digestion.

So what exactly does all this mean? In simple terms clinicians will have support in recognising and addressing psychological difficulties in the patients they see. Young people can speak up for themselves with backing of the NICE initiatives, and family and carers will also have the resources available to seek support on their children’s behalf if they notice any worrying signs. This will hopefully lead to the appropriate help being introduced sooner and give ED-DMT1 and/or diiabulimia less chance of digging in its ugly claws. It should mean fewer ambulances called, fewer hospitalisations and fewer deaths.

DWED can facilitate on your behalf if you feel you need help with the advocacy process.  We are providing this by way of a specialised fact-sheet outlining the NICE recommendations which can be used in communication with your own or your child’s diabetes clinic, GP or nurse. This will contain all relevant information concerning what clinicians should be providing in the way of treatment of mental difficulties. It will outline what the NICE quality standards suggests and encourage health care professionals to address psychological concerns that they may be overlooking. It will also include relevant quotes from the Quality Standards publication to support any eating disorder specific recommendations. Additionally the document includes a detailed breakdown of the updated NICE Guidelines and Quality Standards for adults. By signing up for membership you will also be given access to monthly premium content.

Nice Quality Standards regarding long term conditions and another regarding co-morbidities and complex needs are also planned for the near future, details of which can be found in a downloadable spreadsheet which is linked via the NICE website's Quality Standards Topic Library. DWED hopes that all of these reports will include advice pertinent to the awareness, understanding and tailored treatment required for cases of ED-DMT1 and/or diabulimia.

By Claire Kearns.

The Blame Game

I am sick of the blame that is constantly heaped on people with diabetes by media and society.

I am tired of being made to feel guilty for having a condition I did not cause.

Yet again today I spotted an article leading with the cost of diabetes to the NHS. The story mostly relies on statistics in relation to clinic attendance targets. Admittedly, it does in part refer to the impact of post-code lotteries and failures by specific departments to follow up on patients. Yet still, the majority of blame is always turned back onto the patients themselves.

It does not matter which publication this piece came from, as there will be more based on the same report. There doesn’t seem to be a week that goes by without one media source or another pointing their fingers at us. They total up the numbers: the hospital beds we are taking up, the nurses and doctors needed to attend to us and the prescriptions they must dole out to keep us alive.

Unfairly these figures are often based on the larger impact of type 2 diabetes upon NHS resources, and new stories will more often than not fail to distinguish the difference between type 1 and type 2 diabetes until at least the leading paragraph or two. This is ignorant and misleading.

The fact is that type 1 diabetes is NEVER caused by lifestyle factors, and a significant percentage of type 2 cases present without any such evidence either. In turn, even if some type 2 diabetics do contribute to the onset of their diagnoses this is rarely with intentional fault. For example, being overweight or obese can be a cause of BED or overeating. Yes, a certain amount of responsibility has to be acknowledged but it is simply not as simple as having control or complete lack of. Mental illness can make you feel overwhelmingly powerless.

Nobody with full capacity over their actions would willingly choose this. Nobody thinks to themselves "oooh I am going to treat myself to the podiatrist, a poke and prod and the diabetes clinic and some laser eye treatment for retinoapathy this year. A few hospital admissions for ketoacidosis would be a nice break too."

There is always an underlying reason for "non-compliance" (that dreaded term some health practitioners love to throw around quite casually) beyond just laziness or stupidity. Neglecting to pay sufficient attention to a disease that can have such devastating impacts upon your own body; blindness, amputation, death, in my opinion always suggests some kind of psychological disturbance. Diabetic burnout, depression leading to disengagement and lack of self-care, anxiety related to hypo episodes, Diabulimia.

Oh, I am sorry for developing a chronic illness, and a mental illness to top it off. I am sorry I couldn't quite grasp the concept of having to eat the right things, and inject, and test my blood multiple times a day while maintaining full rationality. I am sorry Jeremy Hunt, for draining your pot of money.

Many individuals that suffer from eating disorders, whether that be alongside type  diabetes or not, will already feel intense shame. Shame for their actions and habits, the extent they go to maintain and hide their illnesses as well as the hurt it can cause to loved ones. I am ashamed of myself and in reaction I use behaviours to try and deal with that, to stuff it down and to punish myself for unspecific crimes. Surely this is enough? Please, leave us be and let us try to heal as best we can. Media sources, try listening instead of berating us and colluding with the unforgiving whispers inside our heads.

By Claire Kearns

 

Unpredictability

Diabetes can be so very unpredictable.

We had a sweltering few days last week in England, and as always in reaction to extreme heat my blood sugars were soaring. It felt like it felt like my body was just guzzling insulin as I had to redose again and again via my pump, with little result.

More often type one diabetics can experience hypoglycaemic episodes when temperatures are in the red, this is because sweating increases both metabolism and energy. Diabetics are warned about the use of saunas and taking too-hot baths for this reason. However, others are like me with their bodies reacting in the opposite way by running high. I’ve even heard of some people having to double their basal rates during the summer, but of course there’s always that fear that you will then administer too much insulin and your sugar levels will then plummet through the floor.

I’ve Googled relentlessly to try and find out why I might be particularly susceptible to this reaction, but there’s not much out there. The only possible reason I can find is related to being dehydrated - which I am pretty much constantly. I found a page quoting Lori Roust, endocrinologist at the Mayo Clinic in Arizona, who says “When you’re dehydrated, you have higher concentrations of blood sugar because less blood flows through your kidneys. With less blood, your kidneys don’t work as efficiently to clear out any excess glucose (blood sugar) from your urine .” [everydayhealth.com "How Weather Affects Your Blood Sugar” Beth W. Orenstein. 6/12/13]

Still, it’s mainly a matter of guessing games. Even the diabetologists seem confused. The fact is simply that with type 1 diabetes there is often no rhyme or reason. This is something that non-diabetics (you know, the blessed ones with well-behaved pancreases) can often fail to grasp. This can be extremely frustrating. You might be asked when experiencing a high or low: “Why is this happening?” and when you give the answer “I have no idea”, you are faced with furrowed brows and confusion.

There are so many other random factors beyond our control that can influence diabetes and everyone is different. Hormone levels can be a huge one for women. Insulin sensitivity, the sites you inject into, illness or stress, medication, pain, a rise in heart rate, and the list goes on. 

The lack of comprehension by some people without diabetes about the unpredictability of diabetes can become particularly problematic when there is also an eating disorder at play. A common situation is where a diabulimic insists they have taken their prescribed insulin but are then found to be in a state of hyperglycaemia. Of course a certain degree of scepticism is natural, and completely legitimate, as eating disorders can be sneaky, clever and deceptive. In fact. it would be quite naive and perhaps irresponsible not to question the given information in cases as such. I have used tricks, pulled the wool over the eyes of those concerned. An eating disorder can be all consuming in the same way diabetes can be, it can be hard to stop and consider that you are colluding with an illness that could kill you.  You have your blinkers on and you act in certain ways that as a well person you never would. You can cause hurt to those you love and be shameless to the extreme.

But it’s never completely black and white. Sadly, treatment services that are sufficiently trained in diabetic related eating disorders are vanishingly scarce. This I know firsthand from experiences both as a day-patient and inpatient at units that claimed to know all about my condition but in reality didn’t have a clue as to what they were doing. I’ve been accused of exercise when my meter kept showing morning hypos. I’ve been disregarded when numbers were a few points above the target range yet I’ve (truthfully) insisted that I haven’t manipulated my insulin in any way. Unexpected highs were always considered to be my own fault no matter how much I tried to relay to them that sometimes diabetes just doesn’t play by the rules.

I’ve also been dismissed when explaining to  well-meaning health professionals how my blood sugars will react or why they are reading as they are because they consider themselves the expert. For example, they change my snack at the last minute from a banana to a pear because they ‘ran out of bananas’ and I say, well I need less insulin to cover this, but they’ve insisted on the same dose and surprise surprise I’ve then dropped low. Or I say ‘Okay I am teetering at around 4 right now, if you give me my insulin at 6pm and dinner is late and doesn’t arrive till half past, I will be on the floor by then.” As a result, I then end up gulping down my meal while trembling all over the place and in floods of tears.

But no, because you are ill, everything you say must be irrational. Often doctors will just not back down or admit they are out of their depth. I can understand there are reasons for this but it doesn’t make it any easier to handle. With diabetes, as well as other chronic health conditions, the person with the condition is the expert. WE know best as to how our body reacts, we know all the facts, we have to live with it Every. Single. Day.  I believe we always deserve to be listened to, have the points we raise considered and acknowledged, instead of just passed over with the shake of a head.

It’s really difficult coming to terms with the fact that we can never know what could happen day to day. Being quite certain that you will be at an acceptable level and yet be flummoxed again is frustrating and provokes anxiety. It is rare to ever feel too safe or stable as you can never be sure what may trigger the next high or low, and it can be exhausting trying to control. The simple truth is we cannot entirely do that; all we can do is our best.

By Claire Kearns.