ArT1st

For the past few months I've been involved in helping an incredible group of people organise ArT1st Live. Art1st was founded in 2019 by Professor Partha Kar, National Specialty Advisor for Diabetes at NHS England, to unite people who have diabetes and showcase their creative talents. When a live event was out of the question in June 2020, ArT1st went online and people submitted their art on social media. These were shared across various social media platforms and gained lots of praise, attention, turned into an online event and reignited the appetite for a live event. 

Fast forward to Saturday night, and over one hundred people gathered at the prestigious Draper's Hall in London, most living with diabetes, some not, for Art1st live. The evening saw various pieces of art exhibited, various performances from people with diabetes, an auction and dinner. We were lucky enough to be joined by Sheku Kanneh-Mason and Ed Gamble. We witnessed some incredible talent and there were big smiles all round the whole time. 

I was honoured to have been asked to speak about JDRF and the person with diabetes perspective, and reflections on the event. I've decided to share my speech here, because whether you were at ArT1st Live or not I think it rings true for everyone living with diabetes. 

Here goes...

"It's amazing to see so many of you here celebrating the talents of people with Type 1 Diabetes in aid of JDRF. I know many of you will know about JDRF and their purpose, but I'll give you a brief rundown so we can remind ourselves of why we're all here tonight. JDRF fund research to cure, treat, and prevent Type 1 Diabetes - through work with government, academia and industry they accelerate research in the UK and within healthcare policy - they ensure that the outcomes of research are delivered to people with Type 1 in the UK. They provide support, information, resources and a voice to people with Type 1 Diabetes and their families.

I was diagnosed when I was 11 years old. I remember it so well. It was a sunny evening in June 2009. I remember the mouldy orange I was given to practise injecting with, and I remember doing my injection all on my own for the first time. I remember being given a blue drawstring bag with a book in it called "Type One Diabetes Made Simple", it was from JDRF and it helped me understand what insulin does - the information leaflets and resources helped us all cope with my diagnosis. I'm 24 now, and I've lived  with it for 12 years, for half of my life.

We're all here tonight to celebrate the artistic talents of people living with Type 1. Through drawings, paintings, photography, music, crafts, dance, poetry and drama we are getting an insight into the minds of some very talented people. 

Living with Type 1 Diabetes is hard. In the blink of an eye you're thrown into a world of injections, pump changes, carbohydrate counting, hypos, hypers, sleepless nights, hospital appointments and all the emotions under the sun as you learn to navigate what will become a very different life. It's unpredictable, it is relentless, and I'm sure all of us with diabetes are all too familiar with the term "burnout" - it's a constant learning curve, a constant balancing act, and you could in some ways say it's an art. 

One early sense of the definition of art is closely related to the older Latin meaning, which roughly translates to "skill" and I think people with Type 1 Diabetes are rather skilled. It's not easy trying to replicate one of the functions of a major organ 24/7 and I reckon we are the only group of people who could correctly calculate the carbohydrate count for a plate of food just by looking at it. So much goes on behind the scenes, so that we can function and stay well, and keep up with our peers. If you have struggled with your diabetes like me, or you're going through burnout right now or if you hate it and it's the last thing you want to think about - I am sure you are handling it with grace, because just living with it can be tough enough. 

I often believe that my blood sugar should be perfect, if I'm going to give insulin and put in all the effort then my blood sugar should be perfect, and if it isn't then what's the point? But the thing about art is that it doesn't have to be perfect. It can be a work in progress, it can be a case of trusting the process, and whatever comes out on the paper or the canvas is your best. And that is all we can do. Sometimes, we have days where our blood sugar really is perfect - and it is such a thing of beauty that lots of us screenshot it and post it on social media, savouring it forever, a good blood sugar day - immortalised, a reminder that it's not always bad.

And even when that line isn't straight, many of us have found art in it anyway - in the Libre graphs that look like cats, or in the Dexcom lines that look like a mountain range.

Art can be outwardly beautiful, or we can interpret it as just that. For example, I like brutalist architecture. Brutalist buildings are characterised by minimalist constructions that showcase the bare building materials. Some people think they're ugly, I think they're great. The structural elements being on show makes for some great lines and angles when taking a photo, and being able to see the materials means we can see exactly what went into making that building.

I often help out with a project called the Tree of Life project at the diabetes clinic I used to go to when I was younger. It's one of my favourite things ever. It makes such a difference to the lives of everyone involved. The concept is that we are all a tree, with roots, a ground, a trunk, branches, leaves, flowers, and fruits. Each one representing a part of you. Your branches are your hopes and dreams, your roots are where you come from, your leaves are the people you love, and so on. We all get to draw our trees, and I love seeing the way the children draw theirs - and seeing their imaginations come to life - I've seen some trees with pink leaves, someone once drew a baby whale where a squirrel would go, I've seen some multicoloured trunks. 

These trees serve as a reminder that there is so much to us, so much more to us than just diabetes and we can withstand storms, like trees do. The one thing we always say to people when drawing their trees is that you don't have to be good at drawing, because whatever you create, that's you, that's your tree and that is art in it's purest form. 

Art is what we make it, and life can be what we make it too. 

Even if you're here tonight as an ArT1st contributor, or you're here as a guest, and even for those who aren't here at all tonight, there is no difference. No limit to your talent. We have all seen both the beauty and the pain in the colour blue, and we recognise that we are not limited in any way by the cards we have been dealt, but nights like these remind us that we are in some ways, enabled by them. 

Living with Type 1 Diabetes can be so ugly, it can be so difficult and how wonderful it would feel to be able to throw in the towel and not think about it every again. The fact of the matter though is that we have no choice, and we carry on, performing a balancing act - walking that tightrope - and trying to master an art that can perhaps never be mastered. Above all, what makes us who we are lies in our hopes, in our dreams, in our talents." 

The night was truly special, and it was magical seeing it all come to life after months of planning. The team did a spectacular job, in particular my first and best 'diabuddy' - Adrian Long - and it was an honour to be even just a small part of this event. 

Chapter 12

I was 11 years old when my immune system killed the beta cells in my pancreas that produce insulin, that control my blood sugar. I took on a job that my body could no longer do for itself - insulin production, blood sugar regulation, a bodily function that most people don't even know about because they don't even have to think about it. 

Those tiny cells in my pancreas, destroyed by my own immune system. Once releasing the right amount of insulin for my body, the correct amount needed to regulate my blood sugar - and suddenly I had to do it all myself. 

I don't remember much of a life without Type 1 Diabetes, I can't tell if that scares me or if I'm grateful, grateful for another year of course and with each year that passes I forget what I'm missing a little more. 

I distinctly remember being diagnosed on June 21st 2009, it was a sunny summer evening when I was admitted to hospital. All I could really think about at the time was how the insulin would make me feel better, and focused on learning the symptoms of a low blood sugar. I injected my long-acting insulin on my own on the first night I was in hospital, the orange was weird and smelly after lots of other children practising on it over what looked like 3 million years. 

I felt great in hospital, I finally had insulin again and felt ready to go home after a few hours. I ended up staying for three days, and I remember there was a girl opposite me who had just had her appendix out - she looked really unwell, and I thought to myself thank goodness I'm not her. But when she went home she recovered, and diabetes was coming home with me.

I was very matter of fact about it, it was just something I had to do to stay alive. I made every effort to make sure I wasn't just that girl who was diagnosed with diabetes. I won't lie, it has played a part in who I am today, because how can I go through what I've gone through in the last 12 years and not be impacted by it. 

I wish I could tell you it's been easy, but I don't feel like sugar coating it. It is hard, but I had to accept that my life had changed and I had no choice. But don't get me wrong, it is fine for the most part, I promise, and it's about recognising that it's a balancing act, and finding the calm amongst the chaos.  

I didn't feel the impact of my diagnosis because I was young. The early days were good. I knew what it meant but not really. I don't remember feeling sad about it as such. I'm sure my parents did. I suppose I didn't anticipate a struggle, I was supposed to be okay, I accepted it and everyone told me I would be. I am "okay" but it was supposed to become routine, like brushing my teeth, right? 

12 years later I'm not unscathed though, I've got some background retinopathy and I'm in active treatment for an ED that only affects people with Type One Diabetes. 

They say having Type One Diabetes is like being on a rollercoaster - because you're up, then you're down and then there are moments of calm, and it repeats. Relentless. You buckle up for the ride over and over again, it never ends. But thank goodness for insulin. For the fact that we can actually control (try to at least) our blood sugars and have the chance to live a life despite the diagnosis. As long as you're on that rollercoaster you're alive. 

When I was younger I took it in my stride, I had the routine down, I had good blood sugars. Until the first time I burnt out, and I realised that the toll wouldn't just be physical, but mental too. Diabetes constantly changes its face - you could eat the same thing and do the same amount of exercise and take the exact same amount of insulin every day, and still have different blood sugar results. And that's because it's just not that simple. The factors that affect blood sugar are almost never-ending and it's a constant stream of emotions.

But it is possible to control it and live with it, and when I'm at low points I certainly forget this. And I wonder what the hell it's all for. But when it's going well it's fine. I've never felt limited by my diabetes, or been treated differently because of it. I don't resent it either. It's given me experiences that I have loved, it's helped me figure out who I am but it is definitely not all that I am and it will never ever be, I've made incredible friends because of it, and being faced with my mortality more times than I would have liked over the years, has made me appreciate the good things in life - as cheesy as it sounds, it is a little bit true.

The thing about diabetes though is that it's fine until it's not fine. It's very fickle. I don't feel bad for myself but I have learnt over the past couple of years that it is okay to get upset about it sometimes, because it is a heavy weight to bear. The episodes of burn out have been all too frequent over the years, add diabulimia to that and you're not in for an easy ride.

When people hear that I have diabetes they often tell me they're sorry to hear it, and I tell them it's okay. Because it is okay, it really is, it doesn't upset me that I have it but as I said before, I won't sugar coat it or lie and say it's a "lifestyle". You have to vent about it and it does scare me sometimes. If you don't have it you will never know what it takes to live with it, and I say this in the politest way possible but you will never ever understand, I promise you. The amount of hard work that goes on behind the scenes so that we can keep up with our peers is immense. 

Reflecting on the last 12 years I wish I could reverse all these years of struggling - but I never asked for diabetes, and I never asked for the struggle. What a 12 years it has been, full of so many ups and downs, and not just with diabetes. I don't know what the next 12 years of my life with diabetes will look like, I don't know what the next 12 years of my life will look like in general, but all I ask is that I find the will and the strength to ride it out, to live harmoniously with diabetes, to deal with what might come my way. I'm still learning. 

I suppose this definitely is isn't the usual inspirational diaversary post that people might expect, but it's real, my version of events. I don't have a perfect HbA1c, I'm not an expert at controlling my blood sugars, I'm trying to recover from diabulimia, and sometimes I ignore diabetes all together, but I certainly try my best and sometimes that's enough. 

I know that absolutely no one gets to say they have an easy life, we all have a cross to bear and pain is relative. Our lives are beautiful, tragic, mad, and every other emotion under the sun all at the same time, and sometimes I really do just want to scream into the abyss - but I have a family that love me, friends that love me, the support I have I'll always be thankful for. The last 12 years have gone by in a flash and I often go back to 11 year old me in that hospital, and I wish I could just tell her - it won't be easy but you can do this, somehow, despite the challenge - and you'll discover a tenacity that you didn't think you had. 

I used to spend a lot of time as a child wondering if there was a reason for me being diagnosed, maybe there is and maybe there isn't. I do know that it isn't all doom and gloom, that is for certain. The light will come through the trees, even if you can't see it sometimes - and in the moments that you find yourself in the dark, well, let's not deny it, it's a bit crap. Let's allow ourselves to feel that. But hold on. 

That has to be the overarching message here, and it has to be okay, because there is no other option.

Onwards. 

Diabulimia: Recovery is not linear

This is a really long post, if you make it to the end, well, I have no prizes to offer you but congratulations.

On the 5 June I uploaded a blog post and opened up about my struggles with diabulima. It was hard, hard to write about something so heavy, so personal, and something that barely made sense to me in my own head let alone to other people. I was in a good place when I wrote that post, on the other side of an eating disorder that affects 40% of young adult females with type one diabetes. I spent a lot of the first half of this year trying to lose weight, trying to regain some "control" over my life, trying to find my self worth in the number on the scales. Then I told my diabetes nurse what was happening and what I was doing, and I was referred to a type one diabetes and eating disorders clinic, and I got better. Or so I thought. 

I had a few weeks where I felt good, I started taking my insulin properly. I pushed aside all the negative thoughts that I had around insulin and weight gain; I gained back the weight I lost and I did my best to ignore it for as long as I could. But eventually I gave up. I burnt out and I didn't recognise myself in the mirror anymore with how puffy I was. When you start taking insulin again your body retains water so you quite literally swell up, and one of the challenges in recovering from diabulimia is withstanding it for long enough until it starts to come off naturally, but I couldn't. 

I went back to where I felt "comfortable", with high blood sugar, with losing weight and with feeling empty. I went back to not having to worry about looking after diabetes, the water weight disappeared and my rings fit my fingers again, and I felt "happy" about the numbers dropping on the scales again. I was struggling again, brought to my knees by my desire to be slim - to feel like I had "control" over something in my life. The difference between the first half of the year and the spring and summer months was that I now had a specialist team involved, made up of a diabetes consultant and diabetes psychiatrists. 

They kick started my first "recovery" but the cognitions took over. I wanted to disappear, from them, from everyone. I got lost in my own mind, I felt like I was in a rabbit warren with absolutely no way to get out. Unapproachable, moody, irritable, I let all the negative thoughts take over. The only thing that brought me any sense of satisfaction was getting lighter. Our minds are so strong, and it is so scary how quickly they can take over. 

July saw mine and my sister's 23rd birthday, but it also saw my first ever time in an ambulance. At the instruction of my team I was asked to go to A&E, much to my frustration. My refusal to go meant my GP got involved, I agreed to go to the GP in the hopes I could convince them not to make me go, but I was more unwell than even I realised and when I realised I actually couldn't breathe I gave in - but not before one final argument with the ambulance crew when I tried to convince them I could walk to the ambulance on my own.

Everything was skewed. My perception of everything was wrong. My perception of myself, of what I was going through, of how unwell I got. Apparently when our blood sugar is really high we lose capacity, to think clearly, to make decisions. I was so frustrated that I was made to go to hospital, that I would have all those fluids, and that I would gain all of the weight back in 24 hours. I put myself through so much suffering to lose that weight, I ignored the burning in my chest, the burning in my legs when I walked up the stairs, the thirst, the sickness...and to gain it all back in an instant? It felt wrong. I felt like all my "work" was for nothing. 

I woke up in hospital looking like a puffer fish. Disappointed that I let myself get to that point but not apologising for any of it. To outsiders, its incomprehensible that I would do that to myself on purpose, but you cannot forget that this is a mental health problem, and one that requires a complete change in mindset, a team of specialist healthcare professionals, input from psychiatrists. It stopped being solely about my weight, but it became a control thing too. I couldn't let go of this. I am aware of the risks, of the complications I'm risking, of the stress it causes to not only my body, but to those around me - and the latter hurts me more than anything. However, it is not my fault. I have to allow myself to believe that, to know that, because to be kinder to myself was something I had to start doing. 

I left hospital completely triggered by how different my body looked, and not even 2 weeks later a similar situation arose, but thankfully no blue lights involved this time.

The guilt was and is immense, however. At my worst I had my family, the diabetes consultant and psychiatrist basically begging me to take my insulin whilst they waited for a bed on an eating disorders unit. Yet I continued to deny it, to deny my body the ability to function properly, to deny everyone around me peace of mind, to deny my team the knowledge that I would be okay on the weekends when they weren't around to call me in the morning. Back in September, just moments away from an admission to a psychiatric ward I pulled myself back from the brink. Just enough to be trusted to function outside of some sort of inpatient setting. I am so glad I managed to find that glimmer of myself amongst the chaos, to step away from those damn scales long enough to realise that I wanted to stay out of hospital. 

That's not to say I was better, but well enough for everyone to back off and "trust" that I would survive without an inpatient unit. It's hard to admit it, to think about it even, because I was in such a low place and no one outside of my immediate family and friends would have known this. I suffered in silence essentially, I continued working even though I could barely keep my eyes open. I'm so stubborn and so against people seeing me as vulnerable that I couldn't say anything. The true definition of surviving, not living. 

No matter how much people asked me to take insulin, told me to take it, begged me to, I couldn't. I had a mental block. I have the support of my family, of my friends and of the specialist team but I have to find it in myself to recover. I have to find that motivation. It's all well and good someone doing my insulin for me perhaps, or supervising me whilst doing it but that's not me, that's not me getting over the underlying issue - it's masking it. I feel like I am almost too self-aware to fully recover sometimes, I had started cognitive behavioural therapy but I figured it all out and knew what they were trying to do right away, I sussed the technique, the methodology behind it. I wish I didn't, I need my mind to be open enough to be manipulated essentially, and it's not. It's something I am working on however. 

I realised soon enough that recovery is not linear and there will be set backs. I have been slowly getting better and improving since September and I have come a long way, I'm back in a more positive mindset and certainly a more favourable position with all of this than I was a few months ago. I would never have imagined that I would go through what I've gone through this year. It hasn't only been frustrating in terms of diabetes but other things too; one of which being the heart breaking fact that May found us at my uncle's, my dad's brother's graveside, watching my auntie sob as she said goodbye to her teenage sweetheart - telling him through her tears that she'll love him forever, asking him how he could ever leave her.

Today brought a diagnosis of a form of autonomic dysfunction. It's not clear yet whether or not this is isolated or damage to the nerves around my heart due to diabetes. No matter which one however, the treatment is apparently the same. It feels like the reactions wouldn't be though. The topic of diabetes complications is difficult, diabetes is so unique in that it is basically the only condition that requires the patient to do everything. There is not a lot a healthcare professional could tell us that we won't already know, and everyday we carry the risk of complications on our shoulders. There is a lot of guilt associated with complications, the worry is that we'll be blamed, but I remind myself I didn't ask for diabetes in the first place and despite my struggles with it I try, so hard, and it's tiring - and I especially didn't ask to have a mental illness that means my hands shake when I have an insulin pen in my hand because the thought of giving insulin causes anxiety. 

My heart has been through so much this year. Emotionally and physically. 

It's easy to tell someone to look after their diabetes, to tell them to give insulin, to check their blood sugar, to count the carbohydrates in their food...but that's just it, it is easier said than done. None of this is natural. Even if you're 11 years in like me or 30 years in, you will always have moments of burnout, or times when you forget to do something, or you just don't want to engage. You could have diabulimia like me, and battle with the thoughts in your head everyday to survive. And you could give me every single reason under the sun as to why I need to look after it, you could show me photos of people who have lost limbs, are on dialysis, the list goes on - but it will not motivate me. You cannot pluck motivation out of thin air. If anything that can have the opposite effect. What you don't know is that we are a huge weight on our shoulders every day, the responsibility for our own lives, to avoid complications.

My point here is that no matter how much you think you know about living with diabetes, you don't. And I mean that in the nicest possible way. That is not to say I don't appreciate and thrive off of the support from my friends and family, but unless you have spent any time at all inside my head there is no way any one will ever know what this feels like. All I ask is that people are understanding, and aware of the psychological impact that diabetes has. It is relentless. Diabetes isn't the worst thing in the world, I truly believe this, so I always push the woe-is-me stuff to the back of my mind and I don't feel sorry for myself at all, but pain is relative and it is okay not to be okay. 

I won't end this post on a negative note. There has been lots of good moments this year despite how bizarre and distressing it has been at various points. I have been learning to look for goodness in each day no matter how small. It's in hearing my mama laugh, it's in phone calls that bring good news, it's in watching our kitten's eyes light up when she sees something she wants to play with, listening to music with my sister, telling my dad he smells as a joke and laughing at his response, seeing the sunrise, watching the sunset, gossiping with my "diabestie", talking to my friends, listening to my little cousin tell me about his school day, it's in hearing my other little cousin tell me that she thinks I look pretty even when I think I look like a sewer rat. 

We all go through sh**, but there is good. Reminding myself of that has helped me get through some tough times, some times are so tough that you can't even see beyond them - but when you're out on the other side look for something good. Diabulimia is part of the bad, but the days that aren't consumed by it, the days where I can be present and have a productive day, they're part of the good. I remind myself that I am so lucky to have such understanding parents and the rest of my family are amazing, my friends are wonderful, my friends with diabetes are incredible and I am fortunate to be part of a pilot scheme that treats people with diabulimia. 

Recovery is part of the good. So I'll keep trying to find it. Not only for me but for my family too. However recovery is also scary, this is the best way I can describe it - when I described that "comfortable" place earlier, that's an island that's right in the middle of the sea and I can get stuck there when the tide goes out, the shore is where I need to be - but in between the island and the shore is the ocean, and I need to swim to get there - I don't like swimming! But the tide will always go out, and I either get swimming or I stay stuck.

I think I need some arm bands though, my stamina isn't very good. I'll get there though. It's just not a straight forward swim. Recovery is not linear. 

Insulin is not the enemy

Our minds...they make up who we are, how we make all of our decisions, our behaviour, where our thoughts reside, the place we can never leave, even if we want to so badly. I started writing this post a couple of weeks ago during Mental Health Awareness week, but I stopped and I shut down my computer. This isn't something I've ever spoken about publicly before and something I've always struggled to put into words, because it's heavy, and it's confusing and everything that's wrong to those who don't understand. It's backwards, and it's messy but it's my reality. It might feel heavy but I want to talk about it...

A few weeks ago I was a significant amount lighter than I am now, my mouth was always dry, I couldn't walk up the stairs without feeling like I was going to pass out, my chest was constantly burning, I was always feeling nauseated, I was almost like a zombie. At the beginning of the year I decided I wanted to be slim, I wanted to lose weight having always felt extremely uncomfortable in my own skin, so I stopped taking my insulin. I have what's known in technical terms as "Diabulimia". 

Eating disorders and insulin omission has been reported to affect at least 40% of young adult females with Type 1 Diabetes. Living with diabetes means I have to pay extremely close attention to the amount of carbohydrates in everything that passes my lips, so that I know how much insulin to take in order to keep my blood sugar under control. It's unnatural. Every aspect of my life with diabetes is dominated by numbers. I was diagnosed at eleven years old and at first I had it down, I took it in my stride - but I struggled through my teenage years and still struggle with it now. 

I've never been in denial, but always found it "easier" to ignore it. High blood sugar became my comfortable place, I didn't have to worry about going hypo during the night, I didn't have to take notice of the carbohydrates in my food because I wasn't dosing for it. 

Every morning that I woke up unable to even swallow because my throat was so dry I was another pound lighter on the scales. 

I was so out of control of my diabetes but I felt like I was in control of my weight, and that was good enough for me. I was feeling down and distressed that I don't have control over the things I wish I could change. I felt uncomfortable. I wanted to feel something else, anything. I was addicted to the feeling. Addicted to feeling empty and void of any moisture, because it meant my body was burning fat. Insulin became the enemy. As many of you who read my blog will know, people with Type One Diabetes rely on insulin to stay alive - and I denied myself all of it. I knew I had to stop what I was doing but I was too busy fretting over this so called new "control" I had, when I had none. Too caught up in getting skinnier.

I saw a smaller number on the scales, but I was paying a hell of a price. 

I didn't tell anyone. Not even my family. Not because I wanted to shut them out, but because I was trying to protect them, I didn't want my problems to become theirs. It was a silent struggle. A battle between the two voices in my head; one that wanted to live, really live and be present and the other that always won, the one that wanted "control" and reminded me how unpleasant my own reflection is. It's a lonely fight, when you're the only one awake in the middle of the night because you're afraid to fall asleep.

My obsessive compulsive mind meant that insulin omission became a compulsion. I get anxiety about a lot of things and weight anxiety made it's way onto the list, and subsequently a "fear" of insulin. I convinced myself that if I started taking it again that I'd spiral out of control and get really hungry and gain loads of weight, and be hypo all the time and I didn't want to feel any of the frustrations that come with trying to control diabetes. 

I don't believe that self worth is based on your size, or how you look. If you asked me I'd deny that your dress size has anything to do with who you are or what makes you. Because it doesn't. So how could I put myself through that, take away my body's means of functioning efficiently, of staying alive? Because I didn't feel good enough, or pretty enough, even though I know I was never big to begin with - I just wanted to be smaller, because my mind skewed my perception of myself, I lost who I was. Eventually it stopped being solely about my weight, it was my control, it was a distraction from everything else, it almost made me numb.

Every morning that I woke up unable to drink water because I felt so nauseous I was another pound lighter on the scales. And I was struggling. 

In my mind insulin was making me "fat", and no matter how much I know I need it, my life depends on it, I didn't want it. I couldn't bring myself to take it. I don't feel bad for myself, nor do I want people to pity me, but life isn't easy and I can't deny the struggles my family and I go through and I felt so guilty that I might be potentially adding to the stress. I don't want to hurt them, I wanted to feel different, skinnier. I now know that opening up to my family was one of the best things I could have done to help myself recover. 

You can never understand if you've never experienced this, I've tried to express my thoughts as best I can but unless you've lived it you truly can't understand what it feels like to want to purposely deny your body what it so desperately needs, for whatever reason. It's so backwards. The fact that I was doing that to myself was painful, physically and mentally. 

Eventually I opened up to the diabetes nurse at clinic and she referred me to their specialist Type One Diabetes and Eating Disorders clinic. I've started Cognitive Behavioural Therapy with the psychiatrist and I've had a few sessions with her already. This is so challenging and most definitely not an overnight fix, but with the help of my family, most notably my darling mama, the psychiatrist, and the Libre, I've started to recover.

It's hard to talk about all of this and admit that it was ever the problem. However I'm learning not to be ashamed of it. It's a real issue and not all that uncommon, but I promise you it is not worth it. Thankfully, my heightened sense of self awareness has allowed me to take a step back and look at my situation via a different lens, and I'm grateful for that. I also think of all the people in my life who I love and I'd be mortified if any of them felt as bad about themselves as I do myself. 

I just wish I took my own advice as easy as I dish it out.

My thoughts around insulin and weight gain remain largely unchanged, but the sessions with the psychiatrist are allowing me to organise them and challenge them, and being in touch with the consultant means I'm bringing my blood sugar down in a safe, controlled manner. I celebrate the small, but relatively large victories like taking all my long-acting insulin in the morning, for a meal, or for every part of the day. 

I have gained back the weight I've lost, and I try to mitigate my anxiety in reminding myself that it's water retention but also a sign that my insulin is working and my body is hydrated and functioning. I thought I had control but I didn't, and I was worried about what the other side would hold - the weight gain, the water retention, the hypos. I don't know if I'll ever be content with who I am or how I look, not because of anyone else but because of what's in my own head. However, I am realising that we have to embrace every inch of ourselves, even what we perceive to be flaws, because you get one life, and one body that will do it's best to carry you through it. I can also guarantee that you are truly your own worst critic. 

The best part about taking my insulin is that I feel good, I have energy and I have a clearer mind. Yes I get frustrated and this is really challenging but I'm learning to change my mindset, and focus on the positives and it feels so wonderful to be able to break down those barriers and give my body what it needs. And now I do have control. 

I know now that insulin has never ever been the enemy, the biggest barrier was myself. 

I'm so grateful for the support I've had so far and I'm definitely moving in the right direction and proud of how far I've come. I'm such a different person to the person I was a few weeks ago. I've got the spring back in my step and I'll do my best to continue ignoring thoughts about my weight and continue to recover, and keep up my good work. 

DKA and a displeasing encounter

Thursday 28 November saw me sitting in A&E feeling like I was burning on the inside. I'd been feeling unwell in the days prior, and I'd been in A&E on the Sunday with extreme pain in my side that they couldn't find a cause for. All the pain and the stress and all the symptoms of an infection came to a head on that Thursday, my blood sugar shot up and wouldn't budge. With no means of testing my ketones I decided a safe bet would be to go via A&E on my way home from work. I got on the tube, found a seat, and sat down for the 4-stop journey to the hospital, I didn’t feel too horrible but I think adrenaline was keeping me going at this point. 

I was thankful to be greeted by a waiting room that wasn’t too busy, and a receptionist that knew what I was talking about when I mentioned ketones; “Oh yes, someone came in with those yesterday actually!” Making them sound more like a bag of sweets than a potentially life threatening situation but I was grateful for his competence. If you’ve ever been to A&E with high blood sugar then you know the drill. Within half an hour I was in Majors, in DKA, with blood ketones of 6 which isn’t what I expected at all.

I was hooked up to all the necessary equipment, IV insulin, potassium, saline...a heart monitor that screamed every two minutes in discontent at my heart rate of 130. Within a few hours all was calm again, my heart wasn’t trying to beat out of my chest, my blood sugars were at a more manageable level of 18 and I sat and listened to the nurses arguing with the doctors outside the room about who gets to use the computer first; “There are PLENTY more computers around the department, this one doesn’t have YOUR name on it”. 

I settled in to what would be a long night, but I was feeling better and all was under control, or so I thought. Then came an overwhelming feeling of sickness and a headache that had me wriggling in discomfort. I knew it was time for a ketone test in the next few minutes so when the nurse came in I made sure to look at the result before she whisked the meter off, 6.1. 

2:30am rolled around and I was feeling incredibly unwell, now in Resus. For some reason they couldn’t get my ketones or my blood sugar under control, and my blood pH was now 7.0 and I was in severe DKA. I’ve never felt heart burn like it. My veins had disappeared into the depths of dehydration and the usable veins were inhabited by cannulas. After about an hour in Resus, a blood gas that wasn’t getting better and no means of getting blood out of me ITU were called to assist by means of an arterial line and at 4am, after 10 hours, I was admitted to ITU. 

I spent 6 nights in hospital, 5 of those in ITU with one night back in DKA, potassium that wouldn’t come up and a heart rate that was concerning the consultant. On the Tuesday night I was finally transferred to a ward, it was so quiet and peaceful and worlds away from ITU. I finally slept more than 3 hours and I was discharged on the Wednesday evening, back to health despite the jelly legs on the train home. 

I’m not telling you this for attention, or because I want you to feel bad for me, I just know that I went through quite something in those 6 days and with my stubborn nature I like to downplay things sometimes, and if you ask me about it I’ll tell you all it was, was boring and tiring; “but - I’m okay now!!” And I am, but I can’t ignore the fact that diabetes really tried it on that Thursday night. I’ve never felt so unwell with diabetes and I know how serious it was. 

Before I finish this blog, I'll take you back a little bit to the Monday evening. I’m reading my book and a doctor walks in, introduces herself as the consultant and I turn my attention to her. She asks me how long I’ve had Type 1 diabetes for, so I tell her, 10 years. Okay she says, then moves on to her next sentence, in the most patronising tone I’ve ever heard; “So, there’s a little test we do and it’s called a H B A 1 C test, do you know what that is? Ever had one of those?” Erm, yes. More times than I can count on two hands, because I’ve had Type 1 diabetes for an entire decade. “Well yours isn’t great” I told her I recently had it tested so I know what it is. She was smiling, but she had her eyes scrunched up like she was scrutinising me and every answer I had was met with “Hm” and with that same facial expression, she moved on to her next question; “Are you aware of the complications of diabetes?” Yes I am. “Go on then, list them.” 

Never in my 10 years of living with diabetes have I been asked to list the complications like it was some sort of test. I told her I wasn’t going to list the complications, she persisted, until I just said no. And she stopped asking. She smiled again, eyes scrunched; “Well, I’ve seen people younger than you who are blind. You’re half my age.” Was I meant to congratulate her on being older than me? On making it through her twenties care free? On not having to grow up with this responsibility?  I didn’t even have the words to respond to her at this point and I certainly was not going to get upset in front of her so I just said okay, and thanks, over and over until she stopped.

If the lump in my throat hadn’t been preventing me from stringing together a proper sentence I’d have had words, but I saved my breath and let the tears well up once she’d left me alone and I spoke to my mum. Once I was done being upset I felt annoyed, annoyed that she made me feel like that and annoyed that she judged me so badly. I am not a number, my life is not what my hbA1c is - my hbA1c will not tell you what’s going on in my head, it will not tell you what’s going on in my life outside of diabetes, it will not tell you anything that justifies talking to me like that. 

I understand that she was just “doing her job” but there are ways of saying things, ways of doing things. I wonder what she thought she was going to achieve by asking me to list the complications of diabetes? Scare tactics do not work. Do not make me feel hopeless, trying to scare me will only make me feel worse and you will not motivate anyone to do better. Not a day goes by that I don’t wonder what my future looks like, so how dare she, as someone who doesn’t even have diabetes and wouldn’t have the slightest clue what it’s like to live with it day to day, ask me to prove to her that I know I could go blind, or develop kidney disease, or lose a limb? It's drilled into us from the day we are diagnosed and I do not forget it.

I am so aware of the risks, and it’s so demotivating when you are trying so hard to avoid them and people like that remind you...remind you of the fact that you might pay the price for a disease you didn’t ask for, or cause, but somehow like magic, overnight - we are expected to be perfect, at 11 years old, 18, 22, 30, 45 whatever age you are, at managing diabetes. All while trying to grow up, fit in to your new school, buy a house, grow a family, whatever it is, whatever stage of your life you're at and go through all the other crap that life will likely throw at you that has nothing to do with diabetes. 

I’m not asking for sympathy in telling you this. Most of the time I’m totally fine with diabetes, I get on with it and I try not to dwell, but I do just have to get that encounter off my chest and I cannot ignore the fact that life with Type 1 diabetes is not easy. The bruises on my arms that would have a lot to say for this admission are finally healing, but this admission will stick with me, and her conversation will stick with me, but for the wrong reasons and probably not for the reasons she thought when she introduced herself to me that evening. 

Support

Support. It's the very foundation that the diabetes online community is built on, we're there for each other because we understand each other, we look out for one another. Or so I thought.

When I was fourteen years old I opened a laptop and wrote my first blog post, and I posted it. I was a teenager trying to navigate the world at the same time as navigating a chronic condition and writing blog posts was my way of venting, of clearing my head, I didn't expect that people would read my thoughts, but they did and that's why I'm where I am today.

That's why the past 10 years of my life with Type 1 Diabetes have been an absolute whirlwind but also full of cool events and speaking opportunties and volunteering, and I hope it continues that way. Being an advocate for this disease has given me a purpose and made me feel like all those nights I've spent in hospital or been up at 3am treating a hypo, or worrying about what my retinal screening results will say, haven't been in vain. I don't feel like there are reasons for everything because some things are just crap, but I feel there was a reason for this, for my Type 1. Maybe.

In life lots of people get lots of different opportunities, some don't, some don't want to put themselves forward and some don't do much to get themselves there. For example in school, in schools there's often a Head Girl or Head Boy, they're chosen because they have something to say, they're good in school and they deserve that recognition and they want to represent their fellow pupils. Now not all the pupils can undertake those roles, but it doesn't mean their voices are any less or that they don't deserve to be heard, but just because they're all pupils at the same school it doesn't mean they're entitled to that title and there are still other ways they can contribute.

I want you to keep that analogy in mind, as a loose explanation of what I'm about to write.

Twitter has been a hub of negativity for the past couple of days in light of recent events, one being the dxLisbon bloggers event with Abbott and the other being the invites to No.10 Downing Street. Two wonderful opportunities full of wonderful people all of whom deserved to be where they were. However as with any high profile diabetes event, they didn't come without their negative perceptions. Many were confused about the bloggers event, questioning motives and whether or not it was ethical, others questioned the Downing Street event wondering why some were invited and others weren't.

I won't get into the details, but what I will say is every single event or conference attended by people with diabetes is always on behalf of the wider community, they're representative, and the bloggers event with Abbott is full of learning and positive experiences and skills they can bring back to Social Media and no one is obliged to speak about their products or services. The Downing Street event was to celebrate those who work tirelessly to improve the lives of everyone with diabetes - so what is with the jealousy and the tearing down of those who were lucky enough to attend?

There is no harm in celebrating other people's successes and being proud of their achievements. And the only reason they are there is because they have dedicated their time to the greater good. Yesterday I was told that by accepting invites to speak at conferences I'm taking away someone else's opportunity and that we need to make way for others. They're right, it is so important for everyone to be heard, but it's not fair to say I'm taking something away from someone else, I have spoken at conferences on something I'm passionate about and have experience in, and I hope other people will take up and/or seek out opportunities to do the same with aspects they're passionate about.

When I was fourteen years old I did not wait for someone else to pave the way for me to get my voice heard, I just did it, and people listened and it's opened up a whole new world which I am grateful for, and I encourage others to do the same. Shout louder if you want to be heard but always remember we are in this together and no one would intentionally drown out someone else's voice.

It's seen as a massive problem that some go to events and conferences and others don't get invited, and this might be an unpopular opinion but I will say it anyway, some people just don't put themselves out there enough and that's fine and that does not mean that you do not have a story to tell, but just because we all have Type 1 Diabetes it doesn't make us all entitled to do the same things as everyone else, and that's where that analogy comes in.

And it is not fair to put others down for accepting opportunities that are presented to them because I'm sure you would do the same if you were invited.

Yes, organisations could work to be more inclusive and online events could be considered an option for certain things but they do not hold the same value as a face to face event. But the truth is sometimes people are asked to do things because they're the right person for the job or they stood out, and we all deserve that platform we really do. Blogging was my escape, then it became my passion and then it became the reason that living with Type 1 is "ok" but going to Twitter and seeing people refer to blogs as "tedious" and "weak" because you're unhappy you didn't get an invite to an event is wrong.

Do not forget that there are so many things you can do to make an impact, if you are truly passionate then look for ways to help. Volunteering my time at Diabetes UK events is so much more rewarding than any high profile event will ever be, and while I love public speaking, things like volunteering are the things that make a huge directly positive impact on lives.

Another thing we are all entitled to is an opinion, and mine might be just as unpopular or popular as the next person's so continue to speak your mind on social media if you want to, but don't pin it all on people who are doing nothing but trying to do good. And if you are someone who is trying to "intimidate" others on social media then do stop, it only creates a bigger rift. I've never had a personal agenda and would never dream of it, I also never imagined I'd get the opportunities I've had.

There shouldn't be a divide like this, we're all in this together even when it doesn't feel like it, just because one PWD with diabetes is at 10 Downing Street and you aren't or another is at a bloggers event or is speaking at a conference, it doesn't mean you aren't worthy of recognition it's just the way things are sometimes, but also remember that no one gets a free ride, and I hope one day that more people will put themselves out there and can get involved and trust me you can be, where there is a will there is a way.

People can choose to be hostile and fight with each other over who should be where, or we can celebrate one another's successes and look for ways that we can get involved ourselves no matter how big or small. I hope I've managed to get my point across with this post, and I hope to continue advocating and taking up opportunties if they arise but this "problem" also isn't that much of a problem if we just put things into perspective, and there is more to us than diabetes always remember that.

Transitioning to adult services | My talk at the Diabetes UK Professional Conference

This month I was fortunate enough to be invited to the Diabetes UK Professional Conference to talk about my experiences of transitioning to adult clinic and share a platform with Reza Zaidi and Fulya Mehta - two incredible diabetes consultants who do so much wonderful work to improve the lives of those living with diabetes. It was a privilege to speak along side them and contribute to their session on Transitioning to adult services.

The conference took place from the 5th - 7th of March in Liverpool. It was a fabulous experience and I'd never been to Liverpool before, so I was very excited to see a little bit of Liverpool and I even got a photo with the infamous Beatles statue! I'd been to the Diabetes UK Professional Conference before, back in 2016, when it was in Glasgow and I got the opportunity to attend as a Blogger; so it was a lovely feeling to be back at the conference but being a speaker this time it was a little bit more nerve-wracking!

I'm so glad I was invited to speak at the conference, I feel like it's helped me get my mojo back a little bit. I took a step back from diabetes advocacy for a little while but it's nice to be back into it a little bit. I have no control over the fact that I got Type 1, but what I do have control over is what I do with it, and advocating for better health care and a better life for those of us with Type 1 is my little way of taking back control I think. I also just love making a difference, and if my experiences can help other people then that's perfect.

If you want to read my speech I've inserted it below...it's a little bit long, but I hope you stick it out!

Good Morning all, I’m Ellie, age 21 and I’ve been living with Type 1 Diabetes since the age of 11. Thank you for giving me the opportunity to come up here and share my experiences with you all of an aspect of diabetes care that I have come to feel strongly about.

Whilst I have experienced much first-rate care from hcps, both as an adult and especially as a child and adolescent, I feel that the transition from paediatric to adult care in diabetes is often treated as if
turning 18 brings a sudden and complete change in physical and psychological needs. This strikes me as a gross over-simplification of the reality of becoming an adult.

I’ve reflected upon my journey through transition to adult services and picked up some key points and a couple of pivotal moments that shaped my journey to adult services, with comparison to my experience in children’s services, and all this kind of set the scene for the months that followed.

We had a good start, I had a transition appointment with my old consultant and my adult
clinic consultant. As I approached 18 my consultant spoke to me about transition, my team were incredible, and I was more than disgruntled to leave them. An appointment was set up with my consultant at the time and the new adult consultant, this was a good move, it was sort of a “handover” so to speak. It was a long appointment, I’m probably not the most straight forward of cases so there was lots to talk about, and plenty of opportunity for me to huff and puff and express my discontent at this change, but I liked the new team and decided to be open minded and embrace becoming an adult.
But then it all went a bit pear shaped. After the transition appointment I didn’t get another one for 10
months, I had one but it was cancelled, I was told I’d get a new appointment through but it took me
calling and asking why I didn’t have an appointment to get one scheduled. I felt like I’d fallen through the cracks and for almost a whole year felt as though I didn’t have a team anymore.

When I finally got that long awaited appointment it was with a DSN, and at that appointment,
my first DSN appointment in adult clinic, she told me - “We don’t have the facilities to get to
know you” I always say that moving from children’s clinic to adult clinic is a lot like moving from secondary school to university; you go from a place where everyone knows you, you grew up there, and then suddenly you’re thrown into a whole new world where no one knows you and you’re among thousands of others. Children’s clinics are generally smaller, whereas with adult clinics like mine they’re huge, and often crushed under the weight of their own success, I know my clinic is good, I just can’t seem to access the good parts, at my very first appointment the DSN said to me “We don’t have the facilities to get to know you”. I was not expecting her to say this, and while I know her intentions weren’t bad, I think she just tried to set my expectations, and that’s sad, she knew how it was going to be and how things would change for me.

I was on an insulin pump when I left children’s clinic, I was on a “break” but a
pumper nonetheless. My consultant and team in Children’s services were very tolerant of my approach to managing my diabetes, I liked to do things my own way with their support and they accepted this, it was a good approach! I loved my pump, but sometimes I needed a break and so just before leaving children’s clinic I was on a “pump holiday”, but a pumper, nonetheless. I was back on injections during the transition process but struggling. Between transitioning to adult services and my first appointment with someone in clinic I lost my insulin pump. I didn’t know this until I went to order supplies and realised I couldn’t, I had to email the only email I had for one of the DSN’s at clinic and she told me via e-mail that they decided it probably wasn’t the best idea to stay on the pump because my Hba1c was too high. This I understood, I know the reasoning, I know the rules, but what I didn’t understand is why someone didn’t at least get in touch, I know they couldn’t offer me an appointment as they were too busy to see me, but I had barely been there 6 months, had minimal contact and no appointments set up and I just felt betrayed. They made this decision with out me, but I also recently found out that you must see a consultant within 3 months of transitioning to ensure the funding gets transferred properly, I didn’t see someone for 10 months, so I suppose I would have lost it inevitably.

The years leading up to turning 18 and transitioning to adult services, were emotional and hard, big
things happened in my life, my mum had jsut been diagnosed with cancer for a second time, I left sixth form with no idea what I wanted to do with my life, my great nan died just before I turned 18, and it’s safe to say that at 18, the transition age, I was a bit of a mess. So, to me diabetes came last, it was not my priority and I struggled immensely with controlling my blood sugar, I just had no interest in it, I know this of course wasn’t the right thing to do but mentally I was in a bad place, I also found it difficult to properly manage my diabetes in general. This meant that when I had my transition appointment, my new consultant asked me if I was depressed. Again, I know his intentions weren’t bad, but I immediately noticed the different approach, they didn’t have a psychologist at the time, and I was advised to contact IAPT. But I was so down because my life wasn’t going the way I wanted it to, my blood sugar was constantly through the roof, I needed help controlling my diabetes through all of this, through the hard stuff and through generally becoming an adult with diabetes – someone from IAPT wouldn’t understand.

It’s no secret that access to psychological services in adult clinic is not common, I had been seeing a
psychologist in children’s clinic and I knew that leaving children’s clinic also meant I’d have to say
goodbye to psychological support for the time being. I’m very fortunate in that I did get the chance to see a psychologist in adult services, she was newly hired and I was told the wait would be 6 months, but she had a huge backlog to work through – so I didn’t see a psychologist for a year but she was worth it. She is proof that my clinic are good, the fact that they even have a psychologist is something I know is not common in adult services, so I made the most of it. But saying that, how sad is it that something that should be a staple part of diabetes care, in both peadiatric and adult services, isn’t a thing in most places, so an adult clinic that actually has a psychologist makes it a really great place to be…this frustrates me a huge amount - diabetes is more of an emotional burden than someone without diabetes will ever know, when I wanted to curl up in a ball and forget about everything I couldn’t, because I have a condition that if I take my eye off the ball for even a few hours things can go seriously wrong – and the issues that I was experiencing at 17 years old in
children’s services did not disappear when I stepped foot in adult clinic at 18 years old.

I saw the same consultant and DSN’s for six and a half years, in adult clinic I’ve seen a different
person almost every single time I’ve been to an appointment I have a lot of “history” so to speak. So when I had my very first consultant appointment in adult clinic and it was with a consultant I’d never met, a registrar, who I wasn’t going to see again, I was more than irritated. Seeing the same consultant and DSN’s in children’s services for six and a half years was something I valued so much, they knew me, they knew my way of dealing with things and why things were the way they were and I had a really good relationship with them. I’ve seen a different person almost every single time I’ve been to an appointment in adult clinic, and while each of these individuals have been lovely, my appointments turn into me sitting there having to explain myself all over again, to a stranger. I just wondered how I'm ever going to build a relationship with this new team if I barely see them.

At one point my DSN appointments turned into seeing a dietician all the time, I’d seen a DSN once before this, and while I do not doubt the dietician’s knowledge or deny her integral role as part of a diabetes team, she couldn’t help me – she couldn’t help me, there was only so much she could do.

I’ve seen my adult clinic consultant twice and I’ve been in adult clinic for three years, I think I’ve seen a DSN the same amount of times. While this length of time between appointments is ok for some it’s not ok for me. One size doesn’t fit all. And while I don’t feel the need for 3 monthly appointments anymore, I feel like at least every 6 – 8 months would be better. When I do see my consultant I think he’s great, very intelligent and very helpful and really understands the psychological impact diabetes has, but the lack of resources means I never get to see him, at my last appointment he wanted to see me again in six months, I didn’t manage to get another appointment booked in for a year and a half.

I saw my consultant every three months in children’s services, sometimes less when I was 15/16 and a moody teenager who stopped taking her insulin properly and had a HbA1c of 15%. But when I
was 18 and starting adult clinic I still had a HbA1c of 12.4%, in a worse place in the grand scheme of my life than I ever was in children’s clinic, struggling on injections, wanting to go back on my pump, losing my pump, getting my appointments cancelled time and time again, eventually seeing someone 10 months later, completely disengaged with this new “team” and feeling like a lost cause, I fell through the cracks at such an important time, transition, it’s meant to be smooth!

It was anything but.

Transition: the process or a period of changing from one state or condition to another.
I dreaded transitioning to adult clinic before it even began, before the moment I stepped foot into a
whole new clinic for the first time – I was acutely aware that it would be different, and I knew the
change would be something I’d have to adjust to, and I’d have to get to know new people. But you
expect the transition to be smooth, to go without a hitch, but several bumps in the road meant I was
ready to disengage completely by the time I got to my first appointment and the months after, and not
even bother trying. However, the moments I got to see the good in my team, the intelligent, caring
people limited by a faulty system, kept me involved.

In the bigger picture we are all just a number, we’re a patient who has outstayed their welcome in a
paediatric setting; but before I’m a patient I’m a person and I’m complex and real life isn’t as straight
forward as a referral to adult clinic. It’s not a secret that children’s clinics get more funding than adult
clinic, the idea being that they’re supposed to prep you well for adult life with diabetes, but what they
can’t prep you for is the fact that the needs you have don’t disappear when you turn eighteen, and
transition is a gradual process that needs to be nurtured the right way to ensure you get that young
person engaged. Even through my involvement in the online community, I have heard of similar experiences from many young adults, and I also hear from older friends with diabetes that adult care can be very minimal.

There’s lots of good work happening around improving transition with sessions like these. Let’s try and make experiences like mine uncommon; make it the norm to have a smooth transition and an easy process, we shouldn’t always have to lower our expectations because of the fact that like my DSN told me, they don’t have the facilities to get to know you.

I want to feel as supported as an adult with diabetes as I did a child with diabetes and that starts at
transition.

Thanks for reading!