Choice

Backtracking slightly, this is my blog for Diabetes Blog Week Day 2, for which the focus was: The Cost of a Chronic Illness - Tuesday 5/16
"Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?"

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There's been quite a bit of media coverage and discussion on the dire state of medical care of those with chronic health conditions in the USA just lately. I’ve read a number of reports relating to people with diabetes having to resort to skimping on insulin doses due to the expense and even buying knocked-down, knock-off supplies through the black market.  As a citizen of the UK with access to the NHS I cannot imagine the hardship of such a situation and find it difficult to fully comprehend. I won’t try to do that because I feel the only people truly at liberty to comment on it are those in the thick of it. All I can say is that I feel very much for them. It isn’t right and it isn’t fair. I very much hope that the situation will change.

Even further away, people with type-1-diabetes in third world countries don’t even have the resources they need to survive. Some won’t even get a diagnosis and will die painfully without any access to insulin whatsoever. T1International is an amazingly worthwhile charity that endeavours to help those people where they can.  It hurts my heart to consider the struggle of those individuals. I know what untreated diabetic ketoacidosis feels like and I wouldn’t wish it on my worst enemy.

With respect to all of this, I am hugely thankful for the NHS, I must stress that. Most of all, that lifeline we have to be able to access our prescriptions without any cost at all is huge. A vial of blood test strips can cost upwards of £25 and with my erratic blood glucose levels, I can go through them quickly. That’s not to mention the cost of insulin itself, of pump supplies and equipment.  Then there’s the option to be able to walk into hospital and be seen if we need to be, without an itemised bill arriving afterwards which lists every blood sugar reading taken, every nurse check and glucose urine dipping test. Yes we may sometimes have to wait, and yes sometimes we can be pushed aside when we need priority, but elsewhere there is simply no option of being able to walk in and that receive medical attention without a price.

The above is a disclaimer of sorts before I continue, to state that I am so they say ‘checking my privilege’. That said, I feel that what I have to say still deserves serious acknowledgement. I must speak of what I know.

An area where the NHS needs significant improvement concerns allocation of funds for the treatment of people with type-1- diabetes and a mental health condition, most significantly eating disorders. There is a fundamental flaw to be found in this area which means money is being wasted, flushed down the drain, often alongside a desperate cover-up of bleach, the stench of which is strong and lasting.

“In the NHS, when it comes to treatment for mental illness, you do not have any choice.”

This is what I was told by a psychiatrist that was overseeing my care as an outpatient at my local eating disorder service. I was on the verge of being sectioned if I did not submit to an inpatient hospitalisation. In agreement to this, I had found a facility that was trained in eating disorders and type-1-diabetes and would be willing to admit me with the appropriate referral, and had an advocate that helped me to stress the importance of this. However, this was not their go to route and so my view was dismissed. Instead, I was sent to the allocated unit that every patient was unduly sent to, the cheapest option.

The first day I arrived at that unit they did not have any needles on the ward to give me my insulin. They had not been trained and some of the staff were surprised to find out I was diabetic. 6 months down the line I was at the centre of a complaint concerning negligence and had been safeguarded by a whistleblower as a vulnerable adult. I had lost hope of recovery and felt traumatised by the entire experience. Now three years later, I still have nightmares about some of the situations I was put in.

On the flip side, while some of the health workers on that unit were downright ignorant and dismissive of my additional needs, others, mainly a handful of the nurses, were undoubtedly fantastic at their jobs. While overstretched and under-resourced, they did all they could, but they were just not clued up on type-1-diabetes and they should never have been put in a position whereby they had to try and cope without full expertise.

I am not the only one with a story like this to tell, far from. Those with diabulimia are routinely being ‘treated’ as those with more typical eating disorders.  This is never going to work.  There are studies that back up the notion that we need to be considered as having separate needs and that recovery must encapsulate care for both our physical and mental conditions.

I have heard accounts from those with diabulimia that are of a normal or even above ‘healthy’ weight that have been put on an anorexic diet. Many have suffered from oedema and have experienced rapid weight gain alongside flair up of complications such as retinopathy and neuropathy. All of this can be hugely distressing not to mention dangerous. 

Other considerations readily overlooked may be the need for extra water, and the entire fact that to become better a type 1 diabetic needs to be MORE hands on with regards to acknowledging food intake, whereas usually someone with an eating disorder is encouraged to step back and become more relaxed, less fixated about what they are eating.

Changes have been made, but the bottom line is that funding is being tossed away when it could be carefully put into specialist care, the right care.  Ignoring this makes a mockery of the fact that we have a national health service, and is an injustice to those people in other parts of the world that do not.

Returning to the words of my psychiatrist, I believe that everyone should have options and be listened to in a discussion regarding their own treatment.  Mental health difficulties can happen to everyone. Having an eating disorder does not mean all our thoughts are automatically scrambled and become irrational, especially where medical knowledge of a condition we have lived with for many years is involved. Often we are the expert more so than the practitioner we are speaking to.  Discussion and sometimes disagreement can be understood (yes, particularly when mental capacity may be compromised), but blatant disregard will automatically casts battle lines.

We are not just patients. We are not just statistics on a chart, a summary of our weight or BMI or HBA1C and we do not need a price tag around our necks.

We are people. We should all be given choice.

By Claire Kearns.

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Keep talking, but don't forget to listen

There’s a belief I want to challenge. One that prompts similarly phrased sayings that are tossed around frequently and readily, in an attempt to disrupt and ultimately lessen the stigma of mental illness.


“You wouldn’t feel ashamed of having cancer, the flu or diabetes!” “Taking antidepressants should be regarded the same guiltless way as a diabetic taking insulin!” “Physical illnesses hold no disgrace!”


Ring a bell? The medication one I hear most often. Taking insulin might be listed alongside treatments such as a cast on a broken leg, painkillers to nurse headaches, a plaster for an accidental wound. Offered as an aid that is seen as easy and without any questioning as to its need. 


I understand the perspective and the intention, but it’s so very inaccurate. 


Am I picking holes? What’s the harm, right? Wrong. It IS damaging. It adds to the mistaken regard of physical illness as entirely separate from psychological. While attempting to normalise conversations about mental illness, a regard for the emotional influence of some ‘physical’ conditions is being thrown under the bus. This is especially important in relation to ED-DMT1 and diabulimia. For those that struggle with an eating disorder and type-1-diabetes taking insulin is not an action that is thoughtlessly undertaken without fear or worry. In fact, it is far from, that fear can feel crippling.


The notion that there is no ignominy attached to physical conditions is a lie. This most related to the misconceptions attached to the presence of what are labelled ‘invisible illnesses’. Many people assume that if an ailment is not in plain sight it must not have any significant impact. This makes it harder to let some aspects of it be seen when they need to be. And honestly, the sheer principle that having a bodily malfunction that can never be fixed (unless there’s a cure) is not going to be mentally burdening is quite ridiculous.


There’s also the commonly held assumption that diabetes being like doing X and taking Y which will equal Z. This can often be based on interactions people have had with those that have type-2-diabetes which is treated by tablets and so rarely the cause of disabling erratic blood sugar levels. I mean, your friend tells you her grandfather is diabetic but it doesn’t let it affect him at all so why should it get you down!


Of course, it’s brilliant that the barriers around mental health stigma are being pushed through. Talking and overcoming our embarrassment over distress and anxiety and depression is a hugely positive thing, but that shouldn’t come at the expense of widening understanding of the link between chronic health conditions and emotional strain.


Moreover, if you don’t have direct experience of something you should always consider your words relating to it with care. Yes, we need to keep talking, but we also need to be listening more intently, with an acknowledgement that teaching is one success, but learning from others is another that is just as important.


By Claire Kearns.

Depression, diabetes and eating disorders

Depression: another big D word and largely silent, invisible illness. Standing alone it can be emotionally devastating and incredibly difficult to cope with. With diabetes involved, depression is often given further means to fester and grow quite dramatically, with stable blood sugar control often overlooked or given less attention than it needs to have. Most recent studies show that depression is twice more commonly found in individuals that have diabetes than those without. It has also been reported that around one in three people with long term chronic conditions experience poor psychological well-being, compared to one in four within the general healthy population.

But why? And how do we address it? Uncontrolled diabetes can be problematic enough to treat, especially with many health practitioners not addressing the emotional roots of the diagnosis at all. A dominating precense of depression can cause the pro-active approach a diabetic needs to take can fall easily by the wayside, with self-care becoming a burden. Of course, such despondency can often be a part of someone experiencing diabetes with an eating disorder as well. Depression, diabetes and an eating disorder make up a dangerous mix whereby each condition can be fuelled by the others, maintaining a cycle that is difficult to break out of.

Despite the high numbers of diabetics that also experience depression, any information available upon diagnosis is sorely lacking. You are typically given all the education that you need in relation to what insulin to take, what to do in cases of hypo or hyperglycaemia and which snacks are better than others, but what about the emotional issues? It seems quite rare that any insight or support is provided to acknowledge what coping with diabetes can do to your head.

Undoubtedly the realisation that type-one-diabetes is an incurable, unrelenting illness which will be with you for life can be difficult to accept at diagnosis. Then there's the possible perceived alienation from peers, the confusing and unanswerable question of 'why me?', the loneliness and isolation of it all. Furthermore, there is the urge to be free and able to do everything your friends can do without having to stop and test your blood/inject/eat every few hours. Such yearning can trigger a sense of denial and rejection of acceptance: what blind-sighted health professionals can term “non-compliance”. It can also be hugely challenging to deal with the influence of mixed media messages that can spread ignorance to the public and the barrage of unhelpful, intrusive comments that may come from the people around you. Nobody seems to tell you about any of this in the beginning.

Of course, this isn't always the case, some people do have good accounts of the process, where the right resources are offered and they feel supported. However, for every success story, there seems to be several other cases whereby a newly diagnosed diabetic is given a few leaflets, a clinic appointment in four months, and is then sent on their way.

Diabetes UK explains the following on their website: “Everyone reacts differently when they hear the news that they have diabetes. You may be initially overwhelmed, shocked, afraid, angry and anxious. Some people go through a stage very similar to mourning – as though they are grieving for lost health. “

Diabetes can also become a tool for self-harm, with suicidal behaviours complicating the issue even further. As well as the highly dangerous practice of omitting or reducing insulin which can be largely associated with an eating disorder, a sufferer of depression may misuse their medication in other harmful ways. This could be by overdose or purposely prolonging a precarious state of hypoglycaemia. Depression can jump on diabetes as a way of pushing the boundaries of life to a desperate and potentially lethal knife edge.

Patience Blystone spoke of how at the height of her illness depression provided her with yet another tool to hurt herself with: “Along with my eating disorder being shown through poor diabetes control, my depression has done the same.... Whether it's me screaming out for help or to be noticed, punishing myself because I feel I deserve that, or just neglect because I can't muster the energy to take care of my body.”

Talking about how she is now able to manage her depression more appropriately through an on-going process of recovery, Patience said: “I've coped with it by finding out what makes me depressed. I am a huge perfectionist, have terrible anxiety and in general am very pessimistic towards my own life. By realizing that setbacks won't ruin my life or make people dislike me, I've managed to always feel the need to be perfect. I can tell myself 'Well if this goes wrong I have THESE alternatives' and move on. My anxiety is a daily battle of tiny bouts of courage, tears, yoga, and just pushing past my comfort zone. And the being negative is just a day by day thing. I find if I enjoy the small things and try not to focus on the hard problems for too long it lessens.

Lucy O'Meara also believes that diabetes has played a role in the development of her depression. She talks of how the condition “majorly decreases (her) motivation which makes relapsing more likely and diabetes control go out the window.” Kayleigh Lovell, who was diagnosed with both type-one-diabetes at the age of six believes her own severe depression started gathering roots at the same age. “I find basic tasks like brushing my teeth or getting dressed almost impossible so taking care of my health is difficult. My eating disorder, OCD and depression have always prevented me from making my health a priority.” she says, “I often feel like I am committing a slow suicide.”

This is not to say that advances in treatment settings are not happening. Recent years have seen the link between psychology and diabetes being considered a lot more has been previously seen. Reports on the association of disordered eating have been a small part of this. Most significantly the National Institute of Clinical Excellence (NICE) released new guidelines which outline the importance of psychological support for children and young people with diabetes. They also updated their existing recommendations concerning this area in relation to adults.

But we need to continue making a noise.  Progress is being made in ripples but we need a crashing wave. If you are reading this and suffering from depression please speak out and don't be afraid.  There is nothing whatsoever to be ashamed of.  Vocalise your distress, shout about it if you must. Go to your GP, diabetic nurse, consultant or even a friend who can advocate on your behalf because you shouldn't have to suffer alone. Nobody should have to suffer alone or in silence. You deserve to be heard.

By Claire Kearns.

How Anxiety Can Feel

If depression is the black dog in the corner then anxiety is the gnawing monster on your back. It will cling to you, drain you of energy and leave you shaking like a steam train on rusty railway tracks.

If you'd told me a few years ago that anxiety would be such a significant problem for me I might not have believed you. Mental health issues have been familiar since my early teens, mostly that looming shadow of catatonic depression, but I'd never really experienced anxiety beyond what is considered the norm. It was only in my mid to late twenties that it started to creep up on me, and now at the age of 28 it is a constant, stalking presence.

There are two types of anxiety. Generalised anxiety disorder can develop as a nauseating terror that sits in your stomach. In can rush over you in waves, suddenly rising, falling and churning around like the inside of a washing machine. It stops you going out and tells you something bad will happen if you do, something awful. In response you squirrel yourself away indoors and avoid interaction with people which ultimately only feeds the original fear.

Acute episodes are those moments where you are pushed right to the edge and suddenly the world around you is distorted. Everything speeds up and you can't reach out or steady yourself. There are usually identifiable catalysts, the small errors that your mind can run with and blow up to extreme proportions.  Perhaps a smashed plate, a late bus, a spilt drink, the anticipation of a particular event or occasion that you are facing. Your head will play tricks; add two and two together to make five, and obsess to an extent where you feel tied in knots.

I am currently in London, dog sitting for a friend while she is on holiday. My aim has been to use the opportunity to meet up with friends who live nearby and be as social as possible while I am here. This is proving to be quite challenging and I am having to draw on various coping mechanisms to get by. Busy train stations and fast moving crowds are very much a trigger for anxiety, as well as the pressure of interaction with others. It is a wearing but worthwhile struggle to stay present instead of avoiding and retreating into a safe but ultimately smothering shell. But I refuse to give up and let anxiety win.

There can be some real strength to be gleaned from the familiar lesson "fake it till you make it". Although putting on a pretence long term is not a solution as recognising your own self worth is important, courage taken in small bursts of role playing can be beneficial. Take on the character of the woman stood next to you waiting on the underground platform. She is smart and has her head held high, she is on the way to work or an important interview or appointment. Transform yourself into her shoes and detach yourself from the mental processes that are holding you back.

 It is also crucial to try to understand that a situation may be less than ideal and bad experiences do happen, but it does not mean the end of the world. Ask yourself ‘what’s the worst that can happen?'  Then keep questioning and pushing, "and so what if it does....what would that mean?' 'So what if I do make a fool out of myself, so what if someone doesn't like me, so what if I get into a disagreement.... so what? Why does it matter?' We all mess up and make mistakes, it is part of being human. You may come up against judgement, discrimination or prejudice, but that has more to do with the instigator than it does about you. Not caring about the insignificant things is far more difficult than it should be, but it is a goal that can be achieved with practice. In turn, be patient with yourself and recognise baby steps that will eventually add up to a mile. It is easy to throw in the towel and label yourself a failure if you do not manage to do something you intend to, but on the days that you just make it as far as the end of the road when the day before you only made it to the front door, that is still a success!

 My own anxiety manifests very much in a deluge of thoughts that run through my head at marathon speed. I am usually able to distinguish irrational from rational but when my anxiety is particularly raging it can be harder to do so. Paranoia sets in and I find myself interrogating myself and harshly assessing my every move, how I look, how I act, the words that come out of my mouth.  Even after walking away from social situations I will pick apart my actions with a fine tooth comb and find imaginary evidence to support flaws and wrongdoing. Regret. Guilt. Self-hatred. I have to step away for a second. I have to try and remind myself that I cannot rely on those thoughts, I cannot trust myself. It is common for me to want to seek a lot of reassurance from other people but I also have to resist this doing too much, as it can create annoyance and unease where there was not even an issue to originally address.

Being able to identify and separate the physical elements of anxiety from the mental is also really important. The racing heart and quickened breathing that may come on either in a fight or flight nervous episode, or as a result of mental distress, is simply the body's reaction to panic. It does not mean that you are in any actual danger.

 Distraction is a key element in addressing anxiety. If available to you, talking therapy can be of great benefit. But individual mindfulness exercises or meditation can also make a real difference and there is an array of Mental Health literature and information available in relation to practicing both. Adult colouring books or games that sharpen your brain into a focus beyond the anxious feelings can also be of great use, as well as knitting, drawing or writing. It is okay and entirely healthy to need time out and space to yourself. Make a list of activities you can read through and try out during those moments when everything starts to feel too much and your mind becomes too distorted to think straight. In doing so your anxiety should gradually begin to lessen until it is at a more stable level.

Most of all remember you are not alone. Mental illness can feel personal and isolating but it is far from uncommon. According to anxietyuk.org More than 1 in 10 people are likely to have a ‘disabling anxiety disorder’ at some stage in their life and an estimated 13% of the adult population will develop a specific form of anxiety known as a phobia at some point. That woman next to you on the tube platform could have just repainted her face after an emotional breakdown among the crowds. Reach out if you feel yourself slipping and let others support you. Good friends will be there to hold you up when you are lagging.

Anxiety might often feel completely overwhelming but it can be controlled and contained. Although it is unlikely to ever be a complete after-thought, it can be put into a box that sits in the background of your thoughts, which slowly through experience and the testing out of different situations will become smaller. Try to enjoy spending time with other people and letting them spend time with you. Those moments can be treasured and put into a new box of positive memories.

By Claire Kearns

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This article was originally written by a DWED contributor in 2016 and then published by www.healthisyourwealthmagazine.co.uk. It is reproduced here by the author for Mental Health Awareness Week.

BREAKING NEWS: NOT ALL THOSE WITH MENTAL ILLNESS ARE CRAZED MURDERERS

This is an old piece I wrote for DWED's past website which centres on the dire state of some newspaper reports on mental health. Sadly this is still a very relevant topic which is why I am re-publishing for Mental Health Awareness Week 2017:

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Monday’s disgusting front page article from The Sun Newspaper has been quite rightfully blasted from all corners. It’s scathing headline “1,200 KILLED BY MENTAL PATIENTS” is glaringly unsettling and sensationalist on first impact. The article that follows reads as damaging and woefully inaccurate. Social network users were responding to the tabloid in force last night, with many calling for a full apology from the paper.

A response penned collectively by charities Time to Change, Rethink Mental Illness and Mind condemns The Sun piece as ‘disappointing’ and ‘damageable’. They state that it “will only fuel the stigma and prevent more people from seeking help and support when they need it.”

Information that The Sun article is based upon is twisted to suit a scaremongering, screaming agenda. Their headline, while based on the message that many people have been let down by mental health provision, is distorted into an attack and focuses on minority details. First of all there is no such thing as ‘mental patients’ but instead individuals that struggle with poor mental health – sorry to break your monstrous and unstable, axe-wielding image there Mr Murdoch. True figures reveal that the number of homicides carried out by those with mental health issues, including those experiencing psychosis has decreased.

The Sun also conveniently failed to mention that suffers are in fact ten times more likely to be victim’s, rather than perpetrators of crime and violence than anyone else. They are also a much larger risk to themselves through self-harm, neglect or suicidal intentions than they are to others. Mental illness can quite often be secretive and contained with many sufferers going about their lives without ever harming anybody else. With the right treatment many can go on to fully recover.

In spite of the reality, sadly the stigma against those suffering from mental illness is still rife. Research by YouGov revealed that people with mental health problems are regarded as the most discriminated-against group in Britain.

A petition has been started by Twitter user and psychology teacher Rhiannon Lockley at Change.org. Miss Lockley requests that The Sun “Recognise that they have acted unethically in misrepresenting information about the mentally ill in this harmful way, and to print a full correction to this effect.” while also asking them to “Make a donation to mental health charities to cover any profit made from this story and to apologise to those misrepresented.”

By Claire Kearns.

 

10 Things I Took Away From TADtalk 2017

Birbeck College London was the setting for Talking About Diabetes (TAD) 2017 last Saturday the 22nd April. The event - now on its second run, was organised by a group of diabetes consultants, notably Dr Partha Kar, associate national clinical director for diabetes and consultant at Portsmouth hospital; Dr Catherine Peters from Great Ormond Street Hospital; and Professor Peter Hindmarsh, of University College Hospital. Hosting was Sky News Journalist Stephen Dixon, who has lived with type-1-diabetes for twenty-five years and introduced a line up of brilliant and inspirational speakers with different stories to tell. The day also provided the chance to interact with fellow individuals with type-1-diabetes and health professionals united with the condition as a significant area of interest. Here I share just ten topics that stood out to me after attending TADtalks.

 
  • Diagnosis is a difficult experience for everyone. “The world tells you, you are wrong in all ways - you have to learn to like yourself,” said Jen Grieves, the first speaker, who is a blogger, as well as BBC Radio 1 journalist. Gavin Griffiths, who followed Jen onto stage, spoke about bullying he experienced as a child because of his diabetes and how he managed to overcome it. Speaking of poor clinical treatment Jane Cummings, chief nursing officer for NHS England said she felt “dismissed and undermined by health professionals.” which now motivates her in attempting to improve patient care. Teacher Adrian Long, who was diagnosed with type-1 at the unusually late age of 40,  also provided the fascinating fact that a type-1 child will have 27 extra thought processes every morning prior to starting school than their peers.

 

  • Being kind to yourself is crucial. Jen spoke at length about this with poignancy, stating that "managing diabetes, just like self-acceptance...is a marathon not a sprint...When you have a chronic condition like we do it’s even more important that you show yourself some love.” Many parts of Jen’s talk seemed fitting to individuals struggling with mental health difficulties and eating disorders. She stressed how we all need to give ourselves credit for handling this illness every day, remarking "did you keep yourself alive today? Yes? You're freaking awesome."

 

  • Having type-1-diabetes doesn’t mean you can’t participate in or even excel at sporting activity. Thirty miles in thirty days? No problem for diathlete, Gareth! We also heard from former international cyclist Roddy Riddle who completed the 6633 Ultra. Known as the most extreme marathon on the planet, the terrain stretches 352 miles across the Arctic Circle. Pretty damn impressive! Sprinter and trainee dietician Mel Stephenson  explained that “A lot of the qualities needed for success in diabetes are the same in sport.” Furthermore, Novo Nordisk cycle team member Thomas Raeymaekers explained: “When I was diagnosed, my doctor told me to stop racing but that day I saw what was to become Team Novo Nordisk on TV and saw that they had diabetes but were professional cyclists.“

 

  • Ultimately, diabetes does not have to stop you from doing anything you want to do. Gareth told us “If you have to remember one thing from today, don’t let diabetes stop you.” and Mel spoke of her belief that “You can still achieve your goals despite having diabetes.” Alluding to how coping with type-1-diabetes can sustain our sense of courage to succeed, Jen shared the following quote by unknown: “I am thankful for my struggle, without it I wouldn’t have found my strength.”

 

  • Social media can be hugely useful in connecting with other people that have diabetes. Adrian who is a regular user of Twitter told us of how he only spoke to one person with type-1-diabetes during the first sixteen years of his diagnosis but then “a little blue bird came along.” Jen also described the diabetes online community as "a handheld cheerleading squad."

 

  • Diabetes technology has come a long way. There were a number of comments to random beeping and synchronised blousing at lunch time! Many attendees and speakers were using pumps after originally starting their diabetic 'journey's' on multiple daily injections. Such repeated references to the influence of modern devices highlighted just how truly exciting the future may be when it comes to further technological advances.

 

  • Volunteering and as a result meeting others with type-1 can be motivating. Mel said such opportunities had “given [her] so much, but always allowed [her] to give so much back.” Roddy spoke of the support and comradely of having his marathon team alongside him during challenges and difficult times: “It makes you take stock and be able to carry on.”

 

  • ·It helps to make light of diabetes when you can. Stephen was certainly not short of quips and kept us all laughing with his comedic commentary. One particular anecdote was a confession relating to airport security. He admitted always choosing the “fittest” security attendant’s queue as it meant that due to having a pump he’d be treated to a full body pat down! Adrian also brought on the laughs with his run through of ’10 good things about diabetes.’ The list included being allowed to eat sweets on account of medical emergencies and the ability to get out of boring work meetings by claiming blood sugars are too high or low! These mutual appreciations showed that focusing on the lighter moments of dealing with diabetes when we can is important.

 

  • ·We are not diabetics but people with diabetes. "I don't want to be a diabore who just talks diabollocks." stated Adrian, while Jen said: "I don't want to be defined by my suffering." Jane revealed how many people that know of her and what she does do not know she suffers from type-1-diabetes "I've never let [diabetes] define me... I'm Jane.” she said.

 

TADtalk2017 showed how spending time with others that have this condition and so truly understand can be extremely beneficial and spirit-lifting. Type-1-diabetes can make you feel lonely at times, especially among those ‘muggles’ or the ‘non-pancreatically-challenged (that’s a mouthful!) people, that while may try to empathise, can never truly know how it feels. It felt really comforting to be among a group of people that were all on the same page with particular concerns and views, and experiences to share. It was a thoroughly worthwhile and enjoyable day, so bring on TAD 2018!

By Claire Kearns.

 

Source: TAD2017

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.