To the precious ones

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

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

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

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

This is to the precious ones.

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

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

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

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

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

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

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

By Claire Kearns.

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.

Clouding Over

The Reality of Retinopathy

(Please ignore typos/errors, I have a good excuse!)

I never meant to do this. It wasn’t supposed to go this far. This was not the person I ever imagined myself becoming. But I am here and it’s happening and I am terrified. I hit a concrete wall, smacked my face hard against a reality that despite being in front of me I did not see, literally could not see.

In the beginning I was just flirting. Experimenting with diets and slight adjustments to my insulin plan, a trim of some units, a lie here and a secret stashed away there, but it was nothing serious, I just wanted to lose a bit of weight and then I’d stop, right?

Here we about 17 years later. The start I mark as September 2001: the implementation of my back to school “diet which soon became bulimia, then anorexia, with spurts of Diabulimia and erratic blood sugar control throughout. I don’t know how I even got here. I can’t even understand how or why or where all those years went. I feel cheated. I am not this age, I did not live those years. It’s almost like I’ve been comatose as each day ad month fell into each other beneath a fog.

21 years of type 1 diabetes. Oh, it’s been a strained relationship, one of resentment and bitterness. I’ve pushed and I’ve kicked and I’ve denied its existence. Now it feels like it’s paying me back, reminding me of my neglect, the damage I’ve caused. It’s pointing and laughing and saying, “Ha! Thought you were invincible huh?”

In the past I’ve shrugged off the complications that have been caused by my eating disorder and diabetes. I’ve not been so bothered by them, and scare tactics or warnings relayed to me by health professionals, my friends or my family have had little effect. Part of it is because I don’t care much about myself, and partly because I have the tendency to put my head in the sand ingrained in me. So, I shrug things off and say oh it’s nothing serious or I am not worth the worry anyhow.

But when the issue is right ahead of you, blocking your view and pressing on your brain, it’s impossible to ignore. My eyes are failing me. I’ve had diagnosed retinopathy for a couple of years now and undergone 4 bouts of extensive laser surgery. I’ve had numerous floating islands and wispy strands of black appear at the backs of my eyes that have mostly dispersed gradually or been corrected by laser. sessions My left eye has always been worse and this time it is chief troublemaker. again.

During the evening of Friday 27th July, I noticed blurriness over my left field of vision and it seemed to gradually thicken throughout that evening. I struggled through Saturday hoping that it would break up and dissolve like the similar patches I’d had occur. But it stayed put and on Sunday seemed to be even more serious.

This prompted an A&E visit, a 7-hour long day, out of hours on call eye clinician, and relying on my patient brother to take me and stay with me.  I was utterly exhausted by the end of it all.

The verdict was that I have a huge bleed right on the macular of my left eye and I cannot see anything besides blurriness out of that side. I was told they could do a procedure to break up the bleed but that nothing could be done outside of regular clinic hours and so I’d be given an urgent appointment that coming week.

Three appointments followed, and it was determined that I most likely needed to have a vitrectomy operation as the bleed was just too large to attempt anything less invasive.  For that I was to be urgently referred to a London specialist hospital.

I waited, and I waited.  Finally, the week before last, I chased them with a phone call to the London hospital. They had no recent record of me, they’d not heard a thing. I went back and forth and back and forth between secretaries and appointment staff on both sides and discovered that my local hospital had messed up big time. A letter has been written on the 10th and yet London hadn’t received it, and neither had I a copy of which I’d been expecting, suggesting this wasn’t just a case of lost mail within the system. It wasn’t sent.  I eventually had to ask them to email it directly over and so the date it reached the intended destination was the 4th September. I now have to hold on an additional two weeks for their allowed response period. It’ a bit of a joke.

These are boring details, but hard to explain the current situation without the lead up. I started this blog with a centre to reach but have lost myself a bit. But that’s a fitting place to be. Lost. I feel so very lost at the moment.

I am wandering aimlessly, disoriented, dizzy, drifting and confused. From my left eye the sky is only indistinguishable by colour and direction, from the ground. I can see a waving hand but not the number of fingers held up. I can see a bright light but no letters on the reading chart. I look at a word, or a sentence and the middle part is all mixed up with pieces missing. Then today, actually within the last 3 hours I can now see a black inky puddle floating ahead of my right side of vision. Just…. no.

This is me admitting I am scared. This time I am fretful. It has been raining heavily for a decade but the damp is only just soaking and sinking in.

I am a reader and a writer. Those two things are what I love to do. I feel stunted. All I am doing is watching endless TV shows, as I can see moving shapes as long as there’s no text. I can’t work at the charity shop I usually volunteer at because I am not safe. I am clumsy and have broken too many dishes and dropped so many items over the last month or so. I struggle to read cooking instruction labels and unscramble the digits of telephone numbers. Typing is made easier, with autocorrect and spell check but it is an effort and mentally exhausting. I won’t manage to proof-read this, so please forgive any mistakes for which there may be plenty. I guess I just wanted to put some words to screen because that is possible as far as I can mostly make out which letters are where with my right eye and from memory. Checking back over it is harder.

I want to take it all back. I wish I could time travel and be able to shake my naive 14-year-old self back to sense, right at the moment I stepped over the edge. Like I said, I didn’t mean to do this. I was only trying things out. By this age, I would have a career and a relationship, maybe a family. I’d be successful and able to be a proper adult. That was the plan. But it’s faded to dust in my hands. I want to rewind and stop myself right at that line that was crossed. I want to say,

“It’s not worth it, it’s a trap, come back, talk to someone, get help.”

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.