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!

Diabetes is always there, canoodling with anorexia and my fall back insurance of running high blood sugars without taking quite enough insulin. 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.

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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.

Unpredictability

Diabetes can be so very unpredictable.

We had a sweltering few days last week in England, and as always in reaction to extreme heat my blood sugars were soaring. It felt like it felt like my body was just guzzling insulin as I had to redose again and again via my pump, with little result.

More often type one diabetics can experience hypoglycaemic episodes when temperatures are in the red, this is because sweating increases both metabolism and energy. Diabetics are warned about the use of saunas and taking too-hot baths for this reason. However, others are like me with their bodies reacting in the opposite way by running high. I’ve even heard of some people having to double their basal rates during the summer, but of course there’s always that fear that you will then administer too much insulin and your sugar levels will then plummet through the floor.

I’ve Googled relentlessly to try and find out why I might be particularly susceptible to this reaction, but there’s not much out there. The only possible reason I can find is related to being dehydrated - which I am pretty much constantly. I found a page quoting Lori Roust, endocrinologist at the Mayo Clinic in Arizona, who says “When you’re dehydrated, you have higher concentrations of blood sugar because less blood flows through your kidneys. With less blood, your kidneys don’t work as efficiently to clear out any excess glucose (blood sugar) from your urine .” [everydayhealth.com "How Weather Affects Your Blood Sugar” Beth W. Orenstein. 6/12/13]

Still, it’s mainly a matter of guessing games. Even the diabetologists seem confused. The fact is simply that with type 1 diabetes there is often no rhyme or reason. This is something that non-diabetics (you know, the blessed ones with well-behaved pancreases) can often fail to grasp. This can be extremely frustrating. You might be asked when experiencing a high or low: “Why is this happening?” and when you give the answer “I have no idea”, you are faced with furrowed brows and confusion.

There are so many other random factors beyond our control that can influence diabetes and everyone is different. Hormone levels can be a huge one for women. Insulin sensitivity, the sites you inject into, illness or stress, medication, pain, a rise in heart rate, and the list goes on. 

The lack of comprehension by some people without diabetes about the unpredictability of diabetes can become particularly problematic when there is also an eating disorder at play. A common situation is where a diabulimic insists they have taken their prescribed insulin but are then found to be in a state of hyperglycaemia. Of course a certain degree of scepticism is natural, and completely legitimate, as eating disorders can be sneaky, clever and deceptive. In fact. it would be quite naive and perhaps irresponsible not to question the given information in cases as such. I have used tricks, pulled the wool over the eyes of those concerned. An eating disorder can be all consuming in the same way diabetes can be, it can be hard to stop and consider that you are colluding with an illness that could kill you.  You have your blinkers on and you act in certain ways that as a well person you never would. You can cause hurt to those you love and be shameless to the extreme.

But it’s never completely black and white. Sadly, treatment services that are sufficiently trained in diabetic related eating disorders are vanishingly scarce. This I know firsthand from experiences both as a day-patient and inpatient at units that claimed to know all about my condition but in reality didn’t have a clue as to what they were doing. I’ve been accused of exercise when my meter kept showing morning hypos. I’ve been disregarded when numbers were a few points above the target range yet I’ve (truthfully) insisted that I haven’t manipulated my insulin in any way. Unexpected highs were always considered to be my own fault no matter how much I tried to relay to them that sometimes diabetes just doesn’t play by the rules.

I’ve also been dismissed when explaining to  well-meaning health professionals how my blood sugars will react or why they are reading as they are because they consider themselves the expert. For example, they change my snack at the last minute from a banana to a pear because they ‘ran out of bananas’ and I say, well I need less insulin to cover this, but they’ve insisted on the same dose and surprise surprise I’ve then dropped low. Or I say ‘Okay I am teetering at around 4 right now, if you give me my insulin at 6pm and dinner is late and doesn’t arrive till half past, I will be on the floor by then.” As a result, I then end up gulping down my meal while trembling all over the place and in floods of tears.

But no, because you are ill, everything you say must be irrational. Often doctors will just not back down or admit they are out of their depth. I can understand there are reasons for this but it doesn’t make it any easier to handle. With diabetes, as well as other chronic health conditions, the person with the condition is the expert. WE know best as to how our body reacts, we know all the facts, we have to live with it Every. Single. Day.  I believe we always deserve to be listened to, have the points we raise considered and acknowledged, instead of just passed over with the shake of a head.

It’s really difficult coming to terms with the fact that we can never know what could happen day to day. Being quite certain that you will be at an acceptable level and yet be flummoxed again is frustrating and provokes anxiety. It is rare to ever feel too safe or stable as you can never be sure what may trigger the next high or low, and it can be exhausting trying to control. The simple truth is we cannot entirely do that; all we can do is our best.

By Claire Kearns.