Diabetes and Me

Type one diabetes.

So many people think it's no big deal, or that it's purely medical. You just test your blood and can't eat as much cake as you'd like sometimes, right? Oh, they'd hate to be you because they're so scared of needles (“Wow, 5 times a day?! Does it hurt?”) but figure you must just be used to it by now. At least you were allowed to always be front of the dinner queue They wouldn’t mind that perk.

Read More

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.

adult-beads-bracelets-371285.jpg

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.

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

MHACC-017advoc.jpg

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.

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

Complications, scare tactics and survival

I’ll go blind or lose a leg if I don’t take care of my diabetes: that’s the one lesson I feel I took away from information given to me when I was diagnosed in 1997, just prior to my 9th birthday.

bigstock-Diabetes-Complications-guniita-108710849-copy-1024x1024.jpg

It’s all quite a blur but I remember those warnings. I remember feeling small and not understanding what I had done to deserve it, why me? Feelings of insecurity, self-doubt and hatred that would later fuel the beginning of my eating disordered behaviours had already started to simmer away in the background. For a long time I was in a state of denial, a little of which still remains in me. I used to pretend I wasn't any different to anyone else.

Language matters. Certain remarks are always remembered: I can vividly recall attending my diabetic clinic appointment at the age of 14 and just prior to the emergence of anorexia. I was at the upper limit of the healthy BMI range and my endocrinologist told me to be careful not to put on any more weight and that losing a few pounds would probably be beneficial to me. The next time I saw that doctor he congratulated me on the far lower number on the scale. He’ll have had no clue whatsoever as to how those words stuck with me and made me so fearful of becoming fat as I started to starve and shrink.

It seems that care has improved quite significantly for children diagnosed with diabetes these days, and the structure of treatment has changed: We no longer have to take set amounts of insulin and so stick to a regular, proportioned diet. Instead the basal and bolus routine means we can adjust our doses and take the right amounts needed to cover any kind of food we want to eat. Advances in technology such as pumps and CGM’s provide even more flexibility and some freedom from feeling so much like a pin cushion. But the rhetoric of blame and guilt for having diabetes and furthermore, the complications it causes is still put onto us. Most of all by the media and carried by members of the public that consume those headlines and read or hear inaccurate reporting regarding diabetes and so just don't know any better. The diabetes community which is most active within the social media sphere is fully informed and yet the ignorance that falls outside of that is still damaging and hurtful.

I see a lot of coverage of the potential complications of type 1 diabetes, even from charities and such that do it in a sensitive manner, but still I don’t see too much out there on management of them, advice on how to cope with additional chronic conditions in both a physical and mental sense. This is important and there needs to be guidance and resources available.

DWED are in fact in the midst of the production of a series of content packages which highlight on 4 separate common complications – these materials are available to our members. We have covered retinopathy, gastroparesis, and neuropathy so far and next we are moving on to nephropathy. For this I have interviewed a number of people with T1ED as case studies who also have direct experience of these complications. Common themes have emerged which also mirror my own history: shame, embarrassment, frustration at the false assumptions that other people around you may make. But also there’s hope, there’s perseverance and bravery.

Still, it can be too simple to think you are invincible and don’t need to worry about any of the longer term ramifications, not just yet. You aren’t at your goal weight yet. You’ll totally stop this stupidity after you’ve made it there. You’ll recover and graduate and be in your chosen career - you’ll be a proper adult, right? But months tumble into each other and then into years. You look back and think ‘damn, I really didn’t mean to do this.’

With complications you can feel totally safe until the **** hits the fan. Sorry, no way else I could put that! You don’t ever know when or what will come first, everyone with type-1-diabetes is different. Every time a new issue crops up I still feel like I am making a big deal and using up valuable appointment slots that could be used for other people. Again, that’s the sneaky self destruction in me. I know it too, but that doesn’t seem to make it any weaker.

I think that for people who also have an eating disorder the onset of complications often seems to come alongside a sense of fault and failure. Failure for being unable to control and cope with diabetes in the way they “should” do and putting themselves at risk through insulin restriction for weight loss purposes (“Diabulimia”) or/and the more ‘typical’ disordered eating behaviours such as purging by vomiting or cutting down food intake and calories [T1-ED].

T1ED can stamp you down with a double dose of guilt. Despite what other people may think about diabetes and the misinformed judgements they might make,  anyone that lives it knows the real facts, eating disorder or otherwise: That type 1 diabetes is not caused by poor lifestyle choices, and cannot be reversed or prevented. Yet, what about the complications it may lead to? You can never be certain as to when they may have developed and whether your eating disorder means you are experiencing them at an earlier rate. Honestly, I’d guess from hearing other people’s   experiences, for most it will be a definite contributing factor. For that you might feel real, raw guilt, guilt that feels more justifiable in comparison to the irrational-that-you-know-is-irrational Type 1 Diabetes guilt.

But is it, really?

An eating disorder is a mental illness and can feel all consuming. In the beginning you don’t think of the future, of still being ill in ten years time. Of having to deal with neuropathic pain and frequent laser eye sessions, a stomach that doesn’t work properly and can lead to quite unpleasant effects, far from glamorous or just that little thinner and fitter, like you intended to be. You don’t even consider that you might have to someday walk with an aid and not be able to go far on your own. But this is the truth of it, and I am merely glossing the surface. An eating disorder is sneaky, deceptive and can prevent the ability to seeing any kind of wider perspective Your world revolves around food and numbers and secrets, avoided diabetes clinic and nurse appointments, pretending you’ve taken insulin or eaten, or not eaten (after binging), lies that fall out your mouth with added embellishment for authenticities sake. It can make you feel completely powerless.

Confirmed diagnosis of complications may help or hinder someone attempting recovery from an eating disorder/T1ED or Diabulimia. It may feel they have been given a concrete reason that they need to try to take better care of themselves and so reduce further risk. On the flip side it is common to feel defeated and damaged beyond repair. From a fast moving car you look out the passenger seat and lose yourself in your own heads, until your body becomes so tired and the dissociation begins to lift – you notice the trees, grass. The breeze against your face and realise that none of it was ever worth it. You climb into the driver’s seat and try to steer but nothing is familiar. You want to stop and breathe but you realise the brakes are faulty; you’ll survive mostly unscathed after crashing the car against a safety barrier.

Nobody means to end up with a list of complications that for some reason seem to all hit at once like falling dominoes. Take me: coincidentally I’ve had a horrendous week with neuropathy, quite possibly due to medication changes. On Friday my balance was so compromised that I couldn’t walk in a straight line or hold myself up, and the pain felt unbearable – numbness and pain consecutively which seems like a contradiction but you’ll know exactly what I mean if you’ve been there. Next thing was on Tuesday I noticed another black ‘floater’ in my left field of vision so have an emergency eye clinic tomorrow.

I can’t really say how it makes me feel. I’ve had retinopathy for a while and three laser surgery sessions, but I’d ever been through neuropathy to the degree where it left me pretty much incapacitated. I did feel momentarily scared, when it was happening and my balance was totally off kilter, but that floated away and I am left with numbness, a whole lot of nothing, to a degree where I am almost nonchalant about it all.

The main element I wanted to bring into this is the effectiveness (or not) of “shock tactics.” I have recently concluded that I am pretty much immune to them. I think this is for two reasons: the first is because I have trouble giving a damn about myself – all that mental health head crap. The second I feel may be relevant to other with type 1 diabetes that were also told the horror stories growing up of losing legs and eyesight and even becoming bedbound. Some like me may have heard such horror stories numerous times over., thrown at you during another attempt to give you a 'wake up call'. It all gets a bit old. It perpetuates the isolation we already feel from the people around us without type 1 diabetes.

We know all the risks without even reading sensationalist ‘real life’ type stories. We are the experts of our own condition. Personally, nothing anyone could say to me in terms of possible dangers of  mismanaging my insulinr would ever faze me.

This is something I wish my family and some friends could accept. I KNOW it comes from a place of care, but the things they can say to try and jolt me out the eating disorder I’ve had for over half my life, and make me face up to what I am doing to myself. I don’t need that. It doesn’t help, and it can actually hurt. Instead I need to be listened to and be able to rant about type-1- diabetes, about neuropathy keeping me awake at night and blurred vision that means I have difficulty reading some labels. Being told I brought this on myself just makes me want to withdraw and beat myself up inside a little more. The bottom line is that shock tactics have no influence on me beyond causing upset. Too many lectures over the years have worn me down and people should save their breath.

I’d be interested to know if this immunity to ‘scare tactics’ is a trait many other type 1’s feel they have. Do you suddenly ‘wake up’ and tighten your monitoring and dosing accordingly if you develop signs of complications? Furthermore, if people tell you that you might need amputation one day or lose your sight is it effective in causing you to act and try to regulate your sugar levels? Or is it support and an acknowledgement that you are doing your best to get through the days that is more useful in helping you to start making changes? I wonder if this is different for people with T1ED due to the influence of how we feel about ourselves.

The names of diabetes complications are not even of use, really. It’s the impact they have on us and our general quality of life that counts. Burying our heads in the sand is no use, but still, there is no need to catastrophise. Complications may not be completely cured but they can be treated. Health Professionals have the means to try and stop progression with medications, changes to diet for gastroparesis and procedures for retinopathy ranging from laser eye surgery to vitrectomy surgery.

Complications are not a death sentence or burdens weighing us down. Every single person I interviewed on the subject was surviving despite really tough circumstances. Type 1 diabetics are the strongest people I know and stronger more for dealing with such life altering complications. We keep going and even on low days, we don’t give in. We hold each other up if we need to and remind each other that guilt and blame has no place. Dwelling on what might have been is futile.

By Claire Kearns.