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.

Hypoglycemia-Christmas-01-1020x560.jpg

  • 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.


 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.

tired.jpg

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.

T1ED advocacy – what’s okay and what’s not?

(Disclaimer, I still only have vision in one eye so please excuse any mistakes! Proofreading is too difficult when typing hard enough!)

Why is it always important to question your motives behind being a charity representative and volunteer?

MHACC-017advoc.jpg

I want to discuss and acknowledge the significance of an issue I often find myself evaluating and for which honesty is essential for. It brings up a dilemma I find myself prone to fretting over which regards the way that I might be perceived by the people that read this blog and are audience to the contributions I provide to the DWED website and social media pages. It’s also something I have been called out on and asked to consider by friends that really only want to see me well and healthy.

I’ve been a volunteer for DWED for over a decade now and presently have a very active role, contributing to the majority of online content and campaigning for awareness through regular posts to Twitter, Facebook and interaction with other associated pages, groups and organisations. These days I feel I have become director, founder and good friend Jacq’s second in command, and have tried to hold the fort steady over the recent period of time during which she has been forced to focus primarily on the demands of completing her PH d something that I am in awe of and also so very proud of her for. Let me stress that none of what I do or have done for DWED in the past has ever been asked for nor expected of me.

But the undeniable fact is that I am not recovered from T1ED and still very much struggle with my own eating disorder and mental health. This offers up a quandary concerning the authenticity and validity of me being a DWED representative or standing as any kind of advocate for the cause we, and I, promote.

Should I be allowed to have such an active role in DWED? Is it okay for me to put myself in the position of being a spokesperson and even offer advice to others with T1ED on how to cope and aim for achieving a better quality of life? Is it acceptable I put out opinions that serve to support or even challenge our members over their own eating disorders when I perhaps need to devote more attention to overcoming my own? Is there a line between black and white here or are there many shades of light to thick foggy grey?

I know I won’t come to a conclusion either way, and I can’t control any perception that the people that read this blog will have, but I’d still like to acknowledge the argument and present my explanations. I hope not to sound as if am providing excuses or attempts to dilute fair judgements but instead some justification and details of context. I also feel obligated to admit that I myself have objected to other charity volunteers that air views that can often raise red flags to highlight a hypocrisy that dilutes the messages they are relaying. But is that most sanctimonious and disrespectful of me? Those character traits are ones I’d truly loathe to have, even if just fleetingly.

My ultimate objective is to always try to be genuine and never serve as an example to DWED’s followers of what recovery is or should be like. I am careful, or hope to be in never serving as an example of how to be or reflect any kind of attitude that remotely encourages other to follow my lead or to not be positive about being able to beat their own difficulties. I try to say ‘this is what we need’ or ‘this is how treatment and the system needs to change’ rather than ‘you can better by just doing x and y’, because really, who am I to say when I have not been able to get there myself? It would be inherently two-faced and undermining.

I’ve also been asked why I am so invested, why I can’t break away like so many volunteers have before me. In many cases this has been for the purpose of attempting recovery or achieving some semblance of purpose outside of the disordered ‘bubble’ - an environment that may be triggering and let’s be honest, quite boring if you’ve found other aspects of life to occupy time and thoughts.

My response to this is again uncertain – on the one hand I do wonder why I have pretty much become the main volunteer standing at DWED, at least in an admin -type capacity and one that places me in a public faced role in writing the members content. blogs and navigating DWED’s social media activity. I do think yes, it’s caught up in the way my disorder is so very ingrained and a part of what I am used to, but it’s certainly not a negative thing for me, in fact I see it as positive and helpful.  I care and I want to help. At the end of the day when I see our analytics and the responses to tweens or Facebook posts, as well as retweets of my writing, it makes me feel accomplished. Like I have made a change and done something useful beyond eating and puking or obsessing about the number on the scales.

blogging-083016.jpg

Of course, if I could have a thriving full-time journalism career instead, perhaps with a focus on literature, as well as still playing some part in supporting DWED as a way to give back, then that would be fantastic. But It’s not realistic, and so I do what I can do feel better about myself as accept my efforts as achievements, however small those may seem at times. Certainly, that acceptance can shrink to dust as I shrug it all away as nothing worthwhile. But I know my pesky sick and self-destructive voice all too well. Doesn’t mean I do not hear it. I push my fingers in my ears, sing la-la-la and try to not let it disrupt entirely

There’s no clear-cut conclusion to any of this. It comes down to how followers and supports of DWED regard my involvement with DWED. That is crucial because I’d never ever want to be a negative influence to members that need support,. Furth more I’d hate to be an annoyance, overexposed or too honest and forth giving, dramatic even, a drama queen. I do worry that our blog page basically reads as ‘Claire’s diary’ now! But simply without these blogs there would be scarce content and little promotion or exposure of the charity on an online and socially interactive level.

I finish though by asking of you all to please come forward to me and tell me if I am being unhelpful or if you’d rather I pipe down a bit! I mean that. My writing is also of value to me and so I want to be safe with knowing that on the whole the work I am producing is okay and does the good that I want it to do. I’d rather know if something is off so I can try to make changes.  You can always PM me on Facebook or DM on Twitter. Alternatively, to hide your identity feel free to use the anonymous contact form on our site (ignore the info about being a case study and just submit your message.)

Thank you for listening xx

By Claire Kearns

DWED - Happy World Diabetes Day

read these thoughts from our members about DWED and peer support

You can join our peer support groups here:

DWEDS

https://www.facebook.com/groups/T1EDUK/

DWED Supporters

https://www.facebook.com/groups/T1EDFFCsupport/

And you can get extra content from signing up!

http://dwed.org.uk/membership-options

Rates are £3 a month for members and £10 a month for HCPs and researchers

Donations always welcome https://www.justgiving.com/diabeteswed

Thoughts from our members

DWED has helped me enormously as a mum of a daughter with this awful disease. Through Facebook and messenger I have been able to ask questions, get support and know sadly that there isn't just me and my daughter going through this. I think the work DWED is doing to raise awareness is amazing. I share so much to let all my friends know about diabulimia. I have also been able to point the staff at my daughter's hospital to the website.

I love this group! I have been suffering from diabulimia for many years! I thought I was crazy. I knew I was slowly killing my self! But had no idea what was wrong with me! I am new to the group and after a couple of hours reading through the posts, I now know that I am definitely not alone!! Can’t believe how many people I can identify with. And the help and advice comes from people who really do understand how it feels.Wish I’d known DWED existed years ago"!

I've found this group to be a lifeline to so many, for me it’s the peer support from people know exactly what your going through, they’ve been or going through it themselves so you know your not alone. From the smallest sigh to a cry for help you know someone’s got your back!

I dont feel alone anymore. Yes I have wonderful family and friends but without this group I would feel so lonely and afraid after being DKA in March. I know people understand me here because they know how hard overcoming this is every day. I read the posts and know Im not alone in what I went through#

This group has been really helpful in combatting the loneliness that comes with dealing with both diabulimia and the complications we suffer. Making some genuine friends who understand and support has done me the world of good.

This group encouraged me to tell the medical teams that treat me about my diabulimia after ten years and ask for help. So far I cannot get help as I am half a kilo over the bmi criteria of having an eating disorder. I've asked crisis team. Mental health OR. go.diabetic team etc etc. But thanks to this group I will keep trying until someone listens.

Thank you to everyone who contributed to this!

The meaning of hypo awareness

This week (23-30 September) is hypo awareness week

img_1568.jpg

I wrote this for last year’s awareness week. Originally posted October 2017

This is such an important subject to keep talking about. At best hypos can be a irritating disablement, but at worst they can be traumatising, anxiety provoking and quite often fatal. 

At the forefront of my mind is how yes, hypoglycemic episodes can be difficult for anyone with diabetes to endure, however it’s a whole different playing field when you add an eating disorder into the mix.

A hypo launches you into survival mode. The options are simply to obtain and ingest glucose ASAP or die. There is no other alternative. But for someone with an eating disorder and type 1 diabetes this can be hugely distressing. and prompt challenging thoughts. The choice to submit and take in those calories may trigger a whole load of guilt to sit on top of that which already exists.

sweers.jpg
past.jpg

During my last admission as an inpatient on an eating disorder unit hypos became an extreme fear for me As I felt my hands start to tremor a sense of dread would set in as I tried to pretend it was not happening and I was no different to anyone else.. I felt guilty, so guilty, of having extra in addition f the prescribed diet. This was in a place where so many others around me were trying to trim their meal plans down as much as they possibly could. Biscuit crumbs and slivers of butter hidden in covert places, a splodge of jam left under the container lid.. Every calorie was counted and any unexpected increase in portions, or even a slice of pie that looked too large or scoop of mash that was overly heaped, often resulted in dinner table meltdowns.  

I can't deny that such obsession was inapplicable to me, but when it came to hypos, I had no right of refusal. It became quite frightening as my insulin was increased and i was experiencing hypos on a daily basis. I had to guzzle down cups or Lucozade, measured to the hundred ml (I always told them it wouldn't be enough, and so another 100ml and often yet another would follow). followed by biscuits, all while shaking and disorientated. But most of all I felt I would be judged for being weak somehow,  for giving in, perhaps not directly by my fellow patients but by their eating disorders. I felt gluttonous and so ashamed of giving my body what it needed. That’s an eating disorder in a nutshell, really.

How dare I allow myself any semblance of good health?

Eating during a hypo is unplanned, it is frenzied and without containment. It can easily lead to binging; desperately inhaling sugary foods as you try to grasp reality, often leading to high blood sugars. More guilt. Surrounded by a pile of chocolate wrappers and an empty cereal box. Emerging from a blurry, half conscious state and berating yourself for a loss of control.

eat.png

So this year, following the release of the BBC Documentary which has led to a rise rise in press and advocacy concerning Diabulimia and ED-DMT1, please consider what hypoglycemia might mean for sufferers of these conditions. Being hypo aware is about more than just having glucose to hand and knowing the signs and symptoms. For people with type 1 diabetes and an eating disorder it involves being aware of the difficult emotions that come alongside. It means accepting medicine and acknowledging that treating a hypo is about essential need, not greed. It’s about giving yourself permission to fight against that toxic 'voice' that tells you that you do not deserve to eat, to norish yourself, to live.

By Claire Kearns.