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
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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.