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.

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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.

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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.

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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.

What Not To Say To Someone With Type 1 Diabetes and/or an Eating Disorder

Knowing how to talk to someone struggling with a serious mental illness such as an eating disorder, or even an individual with just type 1 diabetes alone can be a minefield for family and friends. Both conditions are regarded as invisible illnesses that are often misunderstood. Innocent comments can quite easily be taken the wrong way entirely. My eating disorder will reframe and misconstrue anything it can potentially collude with and use against me. You somehow become psychic and can read minds. It’s often the case that I know I am being duped but I’ll gladly fall head first down that rabbit hole.

So that said, these are gentle suggestions of what not to say to someone with an eating disorder, type 1 diabetes or a comorbidity of the two. Mostly those flippant remarks that that can’t be caught until they are said out loud and then realisation hits. But sometimes it can be ignorance, it can be frustration and anger and shock tactics, none of which work but all of which are born from desperation.

I hope this might be of use to individuals in a supporting position for someone who is ill. Often the way our minds twist things can make absolutely no sense. These pointers are devised through not just my own experience but that of other eating disorder sufferers I know of, voices from some of my close friends, some that I have met in treatment settings, and also members of the diabulimia online Facebook community.

Please feel free to add any others you think are important via our social media pages and share this with your spouse, parents, siblings, your best friend or anyone you think might find them to be of use. My personal commentary is in bold

1.   Try to avoid diet talk. Yes, sadly it’s normal. It’s messed up but it is inescapable. Women in coffee shops opting for skinny milk because they think they need to lose a few pounds or gaggles of young girls asking “do I look fat in this?” as they stand in front of the changing room mirrors. Gutting, but that is the reality of it. Still, making an effort not to talk directly about weight loss and diets to someone with an eating disorder is important. We have enough of that talk going on inside our heads to contend with. Especially don’t ask us for diet tips. Actually, this is never okay, to anyone, as you never know the reasons behind weight loss, or gain for that matter

2.   Further to this, a bit of a difficult one that mostly applies in early recovery when an eating disorder sufferer is struggling to accept their body and the guilt that may come alongside eating and accepting insulin. “You look so much better/healthier/brighter/your face is so much fuller!” Okay so we might know these are intended as compliments, they show compassion and the fact that someone may be so relieved to see you looking better. But again, someone with an eating disorder can manipulate those words automatically. We might hear “You look fat”, “you must not be ill anymore.”  I also know that these kinds of things can be said when actually someone is looking horrendous, as some kind of way to displace that awkwardness and reassure when someone appears to be evidently struggling.  “But you don’t LOOK sick” is another jarring one that can often prompt the automatic thought of Oh well I’ll show you what sick is.”  Outside appearance can also be deceptive; a diabulimic may present as okay on the outside yet be in acute DKA and in need or emergency assistance. Ultimately, any kind of commentary relating to appearance around someone with an eating disorder should be vetoed wherever possible. Positive or negative, we can take it the wrong way.

3.     To a type 1 diabetic with an eating disorder: “Oh wow I could NEVER inject myself.” See the thing is, we sort of die if we don’t and we are trying to avoid that option. “My uncle/great grandfather is diabetic too but he doesn’t have to jab himself.” Yeah, wrong type. Please read a book if you care about me. “Did you become diabetic from eating too much sugar?” “Are you allowed to eat that?!” Just NOPE NOPE NOPE. Especially if you know someone also has an eating disorder. Just NOPE. Educate yourself, please.

4.   “You talk about your illness too much; you need to not be so obsessed.” Funny that, see imagine you have this thing on your back every second of every single day, it’s sort of hard to ignore. Don’t stigmatise something that many people with diabetes and eating disorders have struggled to accept and acknowledge. Let us talk, it helps and is far better than denying it exists. Living with this constantly gives us the right to moan and rant and shout if we damn want to.

5.  “Wow that’s a huge dinner.” “Ooh that looks like a nice treat!” “Glad to see your appetite is back” I have to say, this often seems to be a dad thing. A stereotypical male that is clueless about nutritional content and thinks the four pork pies he just finished were fewer calories than your sparse meal. We might have a huge plate of salad, yeah lots of leaves, some protein. Or okay we could actually be binging, but we are cringing inside already and it’s too painful acknowledge what it looks like through someone else’s eyes. As with the point about body comments, just refrain from commenting on our food unless we specifically ask for your help or guidance, that has to come from us. Don’t be the food police, as it can cause us to want to isolate even more and protect the disorder, as twisted as that sounds.

6.    “Please eat, for me? What did I do wrong? Why are you doing this to me?” This one is a hard one, often from a parent that feels helpless. Personally, the hardest part of being ill has been the hurt it has caused to my loved ones. But it is not about you. Regardless of any relevant cause factors, it comes down to the way WE react. To suggest we would do this to ourselves to spite another person can be painful when most people with eating disorders only want to hurt themselves. It is a mental disorder and rational thought is completely compromised. It can be so powerful that you just don’t realise it’s pulling the strings, and that the control you believed you had was actually your eating disorder playing puppet master.

7.   “You just need a good burger/sandwich/slice of cake in you!" (Worse if followed by ‘love’ ‘dear’ ‘darling’) Clearly unhelpful. Eating disorders are not just stubbornness or forgetting to have breakfast in the morning. Often someone that is struggling a lot will find it a huge challenge to eat in public, and that’s not to mention the effort someone with type 1 diabetes needs to do to determine carbohydrates and insulin doses. Sometimes it doesn’t feel worth it, but we shouldn’t have to put on a show to satisfy someone else if it results in us becoming distressed. Let us be.

 8.   “If you think you are fat you must think I am obese!Again, anorexia, bulimia, BED, and ED-DMT1/Diabulimia, are all specific to the sufferer. Body dysmorphia is very commonly linked and an eating disorder sufferer may see a different image in the mirror to what others around them can see. We are the exception to the rule. Additionally with Diabulimia the fact that eating disorders are NOT about weight is even clearer HBA1C levels being a far more accurate risk indicator. People with Diabulimia will often have huge fluctuations in weight as they manipulate insulin levels and so this cannot be used to determine how well or unwell someone is,

9. “I wish I could lose weight that quickly!” “I wish I was as thin as you” “god what’s your secret?!” Ha, you really want to know? All completely inappropriate if someone doesn’t know the circumstances being someone’s weight or behaviours. Another that links to the first is “god I’d love to be able to eat anything I wanted and lose weight.” Oh well you can gladly have my diabetes and diabulimia if you want! No refund policy though. Take the ketone breath, fluttering heart and constant thrush with you too.

10.  Being told of the damage we are doing to ourselves is simply patronising. We aren’t stupid and nothing will shock us. We know all about the blindness and amputation risk thanks. It’s not lack of intelligence that causes a person with an eating disorder to neglect their health needs. Similarly: “This could kill you, you know?” We sort of do but right now we are more focused on being thin and/or self-destructing.

11.  Last but not least and in my opinion the most grating of them all “You do realise that men like a bit of meat on their bones! Righhht, because I am doing this to myself to snare a man, damn got that on wrong then. Again, ketone breath isn’t much of a turn on. Oh better start eating again if I want to be pretty for boys. I don’t quite understand how this one seems to crop up so often. EATING DISORDERS ARE NOT ABOUT VANITY. If they were then I am definitely going about it the wrong way as I look like crap. Maybe I’ll just tell Mum (see this one seems like a mum thing) that oh well, that’s it then, may as well become a lesbian and join the circus instead.

By Claire Kearns.

Don't read below the line

There’s been a lot of coverage relating to diabulimia in the press just recently. Certainly in light of how largely disregarded the condition has been until now, despite its staggering prevalence. It’s great to see such acknowledgment, from the BBC article that brought a tide of traffic to DWED and the Indy’s comprehensive piece, both of which used quotes from our director and founder Jacquelline Allan. That girl knows her stuff and it’s so crucial to be getting accurate information out there, especially after numerous past occurrences of grossly sensationalist reporting . The death of Lisa Day has prompted some of this. It’s disappointing that such a tragedy is the one thing that brings forth attention, when all our continuous shouting merely falls on deaf ears. But despite that I know her family are determined to bring awareness to this fatal condition that caused the loss of their beloved sister and daughter. In turn, the newly opened service at Kings College London which will treat type 1 and 2 diabetics with eating disorders is hugely positive news which has placed diabulimia under a spotlight.

However, traffic can result in road collisions. By this I mean loud voices of the misinformed and uncompassionate. Those people that will skim a story but have already formed a negative judgement from the headline. A judgement that they want to push onto anyone they can, but most of all those that they see with a spot of vulnerability.

The best lesson is to never, ever read below the line. But it’s that self-sabotaging nature in me, and so I need this space to rant a little. Even if I fear I may just be preaching to the choir.

Eating disorders are not a result of stupidity or ignorance. On the contrary ,it is a proven scientific fact concluded through various different studies that the majority of sufferers actually have a high degree of intelligence. I have never met anyone with an eating disorder that is not smart, some to the point of intimidation. Instead, I have met so many talented people through treatment experiences and online support communities. These people can be great scientists, artists, writers.  

It is often the case that people that develop eating disorders actually think too much. Minds full of numbers and weights and ratios are not idle. Instead, they are over-occupied, fixated, obsessed. If you bring type 1 diabetes into the mix, the need to be clued up on nutrition and the mechanisms of your body is pertinent. You do not have the option to avert focus from any of that, and diagnosis can be a hugely overwhelming time. Furthermore, with diabulimia, insulin manipulation is a not a simple equation.

Manipulation is often the fuel of an eating disorder, it feeds and sustains it. You can become someone you do not recognise, and do things you would never dream of as a healthy person with a healthy mind. Deception is never a game for the idiotic, it is clever and sneaky. You learn to lie with conviction and run rings around those around you. You become the master of trickery. All the while you are blind to the fact that a mental illness is pulling at the puppet strings attached to your limp feet, legs and arms.

It’s not a choice. It is not a decision made with any rationality. Someone with an eating disorder and diabetes is not choosing to not take their insulin just because they can’t be bothered or want to throw their toys out the pram (in this case syringes and test strips!) They are not just being ungrateful for that crucial life source which is now so luckily available. The discovery of injectable insulin to treat diabetics is meaningful to everyone that has to rely on it to survive. But with a mental illness, with an eating disorder, survival is not a priority. It’s also not just “another label” that can be lumped in with anorexia and bulimia when it has characteristics that require treatment to be specifically tailored.

The roots of any eating disorder are deep and heavy. It isn’t an illness that just sits in a shallow pool on the surface but it is all consuming river. It is not vanity, or selfishness, or a fad. It is not just about appearance. Everyone that suffers from an eating disorder will have their own stories to tell and different reasons as to why they developed one. Often these psychological origins can be tangled and extremely difficult for the sufferer to try and unravel. 

“All diabetics have to do to stay on top of their health is take insulin” read one comment beneath a recent article on diabulimia. Firstly, this shows a huge disregard for the impact of type 1 diabetes as it is about so very much more than that. Secondly, again, someone with diabulimia isn’t just a diabetic, they also have a mental health disorder, meaning they do not think logically or the way that any mentally well diabetic usually would.

Ultimately, all I ask is that if you don’t know about a condition such as this, if it’s something that seems beyond your scope of understanding, please do not automatically judge. Do not assume. Instead, listen, try to learn, have some empathy. You do not know the influence that harsh, unkind words can have.  We are not all delicate flowers and Dave or John from Manchester and Bognor Regis aren’t necessarily going to bring forth tears. Still, ignorance spreads like wildfire, and if someone we care about adopts a similar view, well yeah, that can hurt.

I’ll end this with a suggestion: Just don’t read below the line, especially if it’s The Daily Fail online.

 

By Claire Kearns.