Imagine

Here’s just a few things for anyone with a still-functioning pancreas to consider during 2019’s world diabetes month, and hopefully beyond.

Imagine feeling like a human pin cushion from pricking yourself to test blood sugars. I can go through ten glucose strips in a day sometimes, yep I am hardcore! My fingers are so punctured with little black dots that after some time can start to scab over and peel away.

Imagine having to inject yourself or take a bolus via insulin pump whenever you want to eat. Imagine the dedication that requires. It’s easier than you might think to forget it one morning before a rushed breakfast or fret over whether you might have done it twice in a temporary (perhaps fried-brain induced) lapse in memory.

Imagine the comments. The stigma. The ignorance. I can’t count how many times I’ve been asked if my diabetes was caused by me, or brought on because I eat too many sweets as a child or eat the wrong foods.

Imagine the paraphernalia you need to remember to take out with you whenever you go out. Needles and insulin pens, or spare pump cannulas. Blood meter, hypo treatment, ketone machine or ketostix, any additional medication. Small, glitzy evening bags are not practical for someone with diabetes (but I’ve managed to cram as much as I can into one anyway, and usually ended up forgetting or even losing something essential. Perhaps I am just an idiot but I have actually forgotten insulin and testing equipment on too many occasions.

Imagine the loneliness among peers, the feeling different and out of place or disconnected. The burden of worry you cause others. The feeling of being incontinent during drunken nights out or parties when you need to keep checking your sugar levels to stay safe.

Imagine not being able to eat anything new without scanning the nutritional information and noting the carbohydrate content in order to calculate how much insulin you need. Oh yes, it’s hard not to notice the calories and fat amounts.

Imagine feeling emotionally and physically drained some days, The hypos that seem to keep repeating after you’ve had one. The high sugars that just won’t seem to budge and leave you feeling useless as a dead thing laying on the sofa.

Imagine never feeling completely free. Never being able to pause, or ignore type 1 diabetes without consequence. The more you try to deny and forget it, the more damaging and ultimately fatal – if left untreated in the long term – it will be. Imagine the complications of type 1 diabetes that can be devastating and debilitating. Retinopathy, gastroparesis, nephropathy, neuropathy.

4000 people In the UK go through at least some of every single day (accord to JDRF.org.uk). Just consider that., Think of us, think of anyone you know of with type one diabetes. Pause for just a moment with that thought.

Happy world diabetes month to everyone sitting in the same boat as me. You are here and doing this. You are alive and fighting. Keep going and know you are stronger than you think, and braver than you might admit.

APPG 16th of October

I am Doctor Jacqueline Anne Allan and I am a type 1 Diabetic. 10 years ago I set up a charity to deal with the issue of Type 1 Diabetes Related Eating Disorders (T1ED) and/ or Diabulimia called DWED or Diabetics with Eating Disorders and since then I have been a patient advocate, completed a PhD in the subject and commenced clinical psychology training

Firstly I would like to thank the following people without whom I would not be here to explain why despite recent innovations, T1ED is still woefully under researched, under treated, under recognised and misunderstood

DWED as a charity would have been unable to function without the generosity of Stuart Wright our accountant, John Allan my father and Claire Kearns my right hand woman. Also the endorsement of our trustees has opened many doors so I would also like  to thank them and the countless number of volunteers that have given up their time and energy to promote our agenda. Furthermore I would like congratulate Sir George Howarth, on his recent Knighthood, and to thank him for always giving a small charity a big voice.

As I said there have been recent advancements in the Field of Type 1 Related Eating Disorders; updated NICE guidelines, new research projects and Media events have all helped consolidate DWEDs vision. And it’s a simple one, whereby a patient suffering with Diabulimia/ T1ED can be diagnosed with an illness they actually have, treated in a timely fashion, with specialised treatment and perhaps most importantly with the respect and dignity that they deserve.

When the charity started this seemed like an impossibly optimistic dream, it was 2008 and one of my friends had just died on an inpatient eating disorder ward, surrounded by doctors who didn’t know what they were looking at. I was angry and I couldn’t bear to witness one more senseless death without knowing that I was at least trying to do something about it.  At first it was a real fight, trying to explain that this wasn’t AN or BN or Binge Eating but actually a mental illness within its own right, with Type 1 Diabetes specific etiological factors, accompanied by very specific and more frustratingly obvious behaviours which in any other circumstance would have proved a differential diagnoses.

We were dying and I had to convince HCPs that this was not something that was ‘made up on the internet’, we were dying and I had to convince HCPs to focus on fear of insulin instead of food, we were dying and I had to convince HCPs that the extolled measurement of bmi was pretty much irrelevant to us. We were dying and I had to convince the NHS and many other bodies that should have known better, that this was a crisis, no a scandal.

And so we clawed our way to where we are now, but many had to die for this issue to be taken seriously. They were causalities in a war against ignorance, and it is my deepest regret that among them were DWED volunteers who unfortunately will not be able to benefit from the very changes that they fought for.

So of course I welcome, the recognition of NHS England in the form of funded pilot projects. Although I’m not entirely familiar with the team at Bournemouth, I couldn’t think of another service which will squeeze every penny out of the funding better than Kings. That is mostly due to the dedication of the staff who have gone above and beyond to provide a service that is illness specific. Thank you, as with any service, nothing is perfect, but the fact you even exist is validating and hopeful for so many sufferers.

But squeeze every penny they will need to.

I had a client who within one year was admitted to A & E 90 times, was sectioned and detained on an inpatient mental health ward and the sent to a ‘specialist’ private treatment center that claimed, I would argue, falsely, that they had expertise dealing with this issue at a charge (to the NHS) of nearly £1000 per day. They did not. She was turfed out and left to fend for herself after less than a week. This is not an uncommon occurrence. We estimated this specific patients costs to the NHS over 12 months as being around £250K.

One Patient, One year and that was without retinopathy or nephropathy or any of the myriad of expensive complications that usually blight us.

And yet the pilot got less than 300K in running costs

Or 2 patients being paid for by the NHS for less than 6 months in private beds being treated for an illness that they don’t have leading to inevitable relapse and a waste of everyone’s time and the NHS’s money.It’s not nearly enough and it is absolutely not reflective of the catastrophic cost of this illness. Yes to me it’s personal, it’s my dead friends and the reason I have got out of bed every morning for the last decade, but also it just doesn’t make any kind of financial sense. We all know how much trouble the NHS is in so why are we allowing this to continue. As a trainee clinical psychologist this is boggling me, trust me when you’re paying nearly a grand a day for 1 patient to be treated, we are CHEAP, 10 of us are cheap. 100 of us are cheap. In this situation, even specialist psychiatrists are cheap.

And there are some easy wins here, please let me outline what I think the main 3 are  

1) Define a new taxonomy for Eating Disorders in Type 1 Diabetes that reflect diabetes specific aetiology and diabetes specific behaviours such as insulin omission and separate them from standard eating disorders. We don’t know what the death rate is, we don’t even know what the true prevalence is because the instruments that are used were not created with us in mind. And as much as there is debate currently surrounding the stigma attached to diagnoses, try moving through the world without one, you can’t treat what you can’t diagnose,. At this stage I don’t care what we call it but it is not AN, BN or Binge Eating Disorder,

2) Specialist services must be supported and by supported I mean funded, we are literally dying on waiting lists.

3) Research which heavily includes service users must be prioritised. The reasons that there are so many misconceptions about us is that we were excluded from research about us.

To the precious ones

I was just discharged from an eating disorder inpatient unit after spending four and a half months there. It feels like it took me so much longer to get here, and my recollections are patchy and blurred. It’s only recently the fog is starting to thin, and my brain hosts a bed from which seedlings of hope and self-belief are tentatively beginning to sprout.

I feel scared. This was only the start of what will undoubtedly be a long and exhausting journey as I try to get better. I am a weak swimmer that having cast aside my armbands still needs a surround of floats to clutch onto., and I’m still in the shallow end.

I also feel sad. Suddenly alone and missing a foot. Uneasy with how quiet it is.

I wouldn’t have made it this far without the solidarity and invaluable support provided to me by my fellow EDU patients.

This is to the precious ones.

The ones that held me up, that listened to me cry, that listened to me talk.

You made me laugh, and laughed alongside me. You made it feel okay to laugh.

You offered a smile, a hug, a “it will be okay”, a knowing look.

You encouraged me, applauded me, reassured me. Understood me.

Every one of them has made a difference to me in some way. I am truly grateful to them all, and thankful.

The best of people are the ones that struggle to see it - which breaks my heart. They are the most unique, the most memorable, the most talented. good natured and worthwhile.

I will miss then, I will think of them often, and sometimes “goodbye” is jrather a “see you on the other side., where we can start creating better memories.”

By Claire Kearns.

DWED's Holiday survival guide 2018

This time of year can be a stressful and somewhat overwhelming time for everybody. Yet when dealing with both diabetes and an eating disorder, there can be a myriad of issues to deal with. DWED have compiled the following survival tips from knowledge of challenges we know our members have faced in the past and we hope they may be of use to more of you over the Christmas and New Year period. Remember, you are allowed to enjoy yourself and relax without having your disorder completely dictate. You deserve that even if your negative inner voice tells you otherwise.

• It’s easy to fret over present buying in the run up to Christmas day. You might be worried over what to get for whom and how much you can afford to spend. But as the saying goes it is always the thought that counts so try not to become too obsessive as your presence on the day should be valued most of all. The process of going out and braving crowds can also be hugely daunting. If you suffer from anxiety then it is best to rely upon online stores that offer everything and anything at the tap of a mouse with quick delivery. Try not to put yourself in vulnerable situations if you can avoid them.

• You may feel daunted by the expectations put on you to attend social occasions which put you into contact with new and unfamiliar people. They also usually involve food and alcohol. This can be understandably tough for someone with diabetes and an eating disorder as you don’t want to look awkward or strange. Try to be brave and push yourself out of your comfort zone if you can. New experiences and potential friendships can be a revelation when you might be used to existing in a bubble protected by your eating disorder. Do not feel forced to eat anything you are not happy to and take your own snacks if this will make you feel more at ease. If anyone pesters you or asks questions just say you have diabetes and they will usually leave you alone.

• Be cautious when it comes to alcohol if possible (obviously, often this can go out of the window, but still try to be as safe as you can). It is recommended that you reduce short acting insulin doses taken while drinking as alcohol, especially wine, can often cause sugar level crashes later on. It is always wise to eat something with carbohydrate both prior and after you have been drinking.

• Crucial one from the type 1 diabetes rule book: Make sure you have enough supplies. There’s nothing worse than realising you don’t have test strips or enough needles when all GP surgeries and pharmacies are closed. If you wear a pump then make sure to order plenty of equipment s to last you through, as well as spares in case any malfunctions occur.

• Speak up and let people know how they can help you prepare, especially with regards to dietary specifications. Being aware of what to expect will hopefully help you to feel more at ease. Finding a balance between restricting and binging when food is in abundance might be particularly difficult so try not to give your eating disorder room to run riot. Discussing what you will eat and what portions you can manage in advance with people that are around can be hugely worthwhile if it enables them to be more mindful. Being served a plateful of food that feels completely unsafe by someone that is completely unaware as to how this may affect you can be disastrous. You may be tempted to isolate and keep concerns to yourself when you fear lack of control over the situation but this will only create tension and leave you feeling miserable. Instead, make sure you create an open and honest dialogue.

• Do try to allow yourself some treats but not to the point where you may feel tempted to manipulate insulin or compensate in some other way. It’s not worth pushing yourself to a limit where you are at risk of falling over the edge. Don’t put too much demand on yourself to be perfect and think of the Christmas meal as any other meal.  Furthermore, avoid the scales before, during and after Christmas if you can manage to. It may be extremely difficult to comprehend but ultimately the measure of your weight does not matter and isn’t wort any consideration.

• Family relations can be problematic and being around your relatives and loved ones constantly can feel like too much. It is normal to bicker and disagree but full scale arguments can be distressing, especially if they are centred on your struggles with food. To avoid feeling caged in or uncomfortable make sure to take moments out and distract yourself; go for a walk, watch rubbish Christmas TV, or write down your feelings. Talk to friends on the phone or online. Don’t give yourself the opportunity to fixate on food.

• Your professional health care providers should also be at hand to provide guidance if you are particularly struggling.  If you are receiving treatment from ha health care professional you feel you can talk to then try to request an appointment with them just prior to the festive season. This could be your diabetic nurse, GP, eating disorder nurse, therapist or psychiatrist if you see one.  Additionally some eating disorder units offer group therapy sessions to outpatients that are focused on Christmas so this may be a resource that is available to you. Local peer support groups are also run by charities such as Beat (https://www.b-eat.co.uk/) and Mind (http://www.mind.org.uk/ ).

• For peer support for other people struggling with type 1 diabetes and eating disorders please feel welcome to join and post in our facebook support forum. Visit https://www.facebook.com/groups/T1EDUK/ for comraderie and understating. Alternatively if you are a freidn, family or carer to someone with T1ED looking to talk to others that may be in similar situations then consider joining  https://www.facebook.com/groups/T1EDFFCsupport/.

Keep reminding yourself that it’s supposed the season of goodwill to all (including you), so cut yourself some slack. Be less self critical and also give yourself credit for the things you achieve. When it’s all over, the wrapping paper is cleared away and the tree is taken down, recognise the fact that you got through it. New Year can provide the motivation and opportunity to make changes and start afresh.

Believe in yourself.

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 You do not have to suffer alone. If you need a listening ear there is always somewhere to turn. Beat’s helplines are open 4pm until 10pm seven days a week, and from 4pm until 8pm on Christmas Day, Boxing Day, and New Year’s Day. Contact their under-18s helpline on 0345 634 7650 or the adult helpline on 0345 634 1414.

Diabetes UK’s helpline is open 9am-5pm at 0345 123 2399 or 0141 212 8710 if you are in Scotland.

The Samaritans are also open 24 hours a day, 7 days a week over the Christmas period. You can call them on 08457 90 90 90. In the case of a medical emergency or if feeling at risk of serious self harm then please reach out and call NHS 111 or visit your nearest accident and emergency department.

By Claire Kearns.

Republished and refreshed from 2016 version.

It's okay to not be okay

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

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

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

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

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

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

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

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

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

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

Drained, wasted an wrung out like soggy dishcloth.

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

I’m just so, so tired. It hurts.

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

By Claire Kearns.