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.

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 important to question your personal motives behind being a charity representative and volunteer?

I often find myself fretting over the level of acceptability and appropriateness of contributions I provide to the DWED website and social media pages. This is essentially because I am no good example to follow in terms of healthiness or recovery from T1ED. I have also been called out on the issue bt friends that 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.

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

Action plan

Sometimes I worry that I’ve completely exhausted blogging about type-1-diabetes and eating disorders to death. But then when I can’t sleep at night my mind won’t shut up; it’s over thinking all of the things that I haven’t said, niggling doubts and grievances I feel I need to let out. I just hope nobody reading these blogs is sick of my rambling!

Type 1 diabetes is always there, canoodling with anorexia, providing me with the fall back insurance tool of being able to manipulate my insulin doses to control my weight.I fear hypos most of all and struggling to accept the basal adjustments my specialist nurses urges me to make. It’s still a constant battle to stay attached to my pump, and it’s disheartening to still hear ignorance and judgment on both type 1 diabetes and eating disorders wherever I go. The combination of the two still seems to be a wildly foreign concept to most members of the public that have no personal investment in the issue.

This is still frustratingly the case even after a number of notable print and online articles that have been published over the last couple of years on Diabulimia and the prevalence of disordered eating in individuals with type-1-diabetes. The brilliant documentary “The World’s Most Dangerous Eating Disorder” which was aired by BBC Three last year led to widespread acclaim and we were so pleased. For a while, with a surge in our website traffic and social media interest, it seemed like it could be a major breakthrough.

In retrospect it merely splintered the glass surround which makes it easier for outsiders to see through but the other side which means options of treatment and true acknowledgment is still so unreachable. This despite coverage of far too many unnecessary death and statistics revealing staggering mortality rate that prove that those with T1-ED and/or Diabulimia walk shakily close against the edge of a tall building every single day.

Yet the reaction to that reality is quite predictable a lot of the time, still: “how stupid can they be? How difficult can it be to just inject if it’s a matter of life of death? Don’t they realise how crazy they are to do that?” and oh of course, there friend or relative has type 1 and lives a healthy life, their diabetes does not really affect them at all!” The eye rolling and that frustrating and wholly misjudged that is still used by clinicians: “non compliant.”

There has certainly been positive change lately and that is an achievement, small feats that add up like another stone to the fortress walls and chip away at attitudes that ultimately need re-education. More of us are asserting ourselves, challenging stigma when we hear it.  Some health providers have really stepped up and trained themselves and their teams (whether that be diabetic clinics or eating disorder units) as best as they can in the shadow of NHS funding cuts. On a wider level there have been conferences and numerous new research studies on the disorder.

Widespread discussion on the importance of the right language used within healthcare settings has been a hot topic on social media just recently. Twitterites Renza/Diabetogenic (@RenzaS) and The Grumpy Pumper (@grumpy_pumper) have been fantastic advocates on this matter, as well as Dr. Partha Kar (@parthaskar) and a handful of other HCP’s, all of which should be applauded. I only hope that this evolving dialogue continued to spread further afield beyond the tight knit diabetes community that is mostly found on Twitter or\ Facebook.

We are shouting, hollering.  Louder now after some people have begun to notice, to react, largely as a result of the documentary. Still, it can be entirely frustrating and exasperating.  It can often feel like you are left with nothing but a sore throat and strained voice as the people that should be listening walk away oblivious. It’s hard not to feel bitter, to dwell and let resentment fester.

Hope can fuel a surge in determination one minute, almost excited by the common goals, the shared anger and upset, and that camaraderie found among a group of fellows with type-1-diabetes. It can be a fierce energy that rises up and bounces back and forth with re-tweets and the swapping of blogs that for the most part, are completely spot on and relatable to you, in at least some parts.

That understanding, compassion and sense of community is truly valuable, it means we know we can fall down and be held back up. That we can feel comfortable to rant and moan about unpredictable sugar levels, neuropathic pain or even giggle over the humour of common #diabetesprobs. Plus those diabetes memes which can be hilarious to us, (well me anyway! Perhaps I’m too easily amused,) but absolutely baffling to those with functioning pancreases. I’ll never forget sending a friend some of those “diabetes cat” images and protesting about how funny they were. On the contrary, she was completely baffled and the humour I saw didn’t compute to her one bit. Not her fault at all, but hey a fellow diabetic would probably find them as funny as I do.  Is there anyone with type-1-diabetes that can’t appreciate the thought of Hansel and Gretel style blood test strip trails and those don’t-give-a-fuck-attitude ee cards (see below!)? Laughing is a good remedy.

Friends and family can be amazing when they try to appreciate our daily struggles and be compassionate, but the fact is that only we can know what it feels like to deal with chronic and largely invisible illness every day, every minute and every second without any reprieve from it. For me at least, despite a sense of patience and the fact that I know I am cared about, it is still all too easy to detect a sense that I am a miserable bore when I talk about diabetes woes. I’ve been told that I am obsessed with my own disease and need to find other things to focus on by so called friends.  I’m always complaining, and there’s always some medical pain I am suffering with. It makes me feel like a huge drama Queen and hypochondriac.

There is some truth in it, in that yes distraction can be good and thinking about your problems can make you more miserable. But the reality is that this illness never relents, and it can’t be ignored. The control it has over our bodies and our minds is like a swarm of hovering gnats hovering around us as we stand in a room with the windows bolted shut. You can swat them away but you’ll never catch and kill them. The only way to breathe is to let in some fresh air, and give them a way out. It’s not fair that we should be told to ignore the biting to the back of our necks when it just means we’ll be left covered in a rash of sore red welts. Why should we be ashamed to vent, if that is something that helps relieve the burden and ache of it all a little?

So I may have gone on a bit of a tangent here, down a rabbit hole. But I do have a point ultimately and that is the urgency of some real action. Awareness is always positive but it isn’t enough, especially when it is rarely put out into the public sphere. We need strategy, we need government action, and crucially we need the godamn media to sit down and pay attention for once. They seem to be completely deaf, the newspapers anyway, some more guilty than others of course. But every time there’s a ridiculous headline, they lump type 1 and 2 together or suggest we cure ourselves with okra, cinnamon or a better sleep routine, we make a fuss and call them out, sometimes they apologise and then a few weeks later the exact same kind of thing occurs. It’s blatantly disrespectful and insulting to be placated and then blatantly ignored for the sake of causing a reaction or even a moral uproar to stats on the amount of money diabetes care is draining from the NHS. (And yeah, better care and earlier interventions=less hospitalisation and less expenditure, isn’t it a no brainer?!)

I am saying all this but do I have any idea myself? Well yes, I do. First of all with the papers - as a DWED representative I am challenging myself to call the big wigs at some national papers and confront them on their failings. Starting with the Daily Express, yep. So wish me luck, right now a frustration is motivating me but I may want to hide scared tomorrow. Which is why I am stating this here: I will do this. I will record those calls and I will report back in a later blog.

Second is a project where you all can chip in and put your case forward if you wish. When I spoke to (the truly amazing) Norman Lamb in May for a recording which is uploaded in our members area, he offered to take DWED’s case forward to Jeremy Hunt and have it raised in parliament. This would be in the form of a letter that we will address to Jeremy Hunt that will specify just how crucial it is that people with T1-ED and Diabulimia have access to better care, which can be done with the shuffling of money, with training across the boards, more knowledge given to GP’s, AN OFFICIAL DIAGNOSIS. It may fall on death ears, but it’s worth a good damn shot.

What we need from you are testimonies that we can add to the letter. Real life truths from people with T1ED that want to push the message that further change is needed NOW, those that feel devastated and worn down, and let down by a lack of adequate support services. Submissions from friends, family and carers would also be so helpful, especially as sometimes their loved one is unable to advocate for themselves, or in the worst, most saddening instances, they are no longer with us to do so.

I will be setting up an online form for submissions in due course and will amend this blog with that link. [4/7/18: Please find the submission form here.]

Keep fighting everyone, it’s cliché but all of you out there with type-1-diabetes, with or without an eating disorder, are fighters and probably so much stronger than you believe. Hold on. Let’s act on this. We are all in this together. Keep looking at the stars instead of blackened night’s sky. We might not ever be able to shoot for the moon but we can aim for the stars.

By Claire Kearns.

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.