‘HbA1-what?’ – Surviving the Diabetic Clinic Visit

Nobody likes seeing the stark white NHS letter slide through the letterbox: the annual appointment from your diabetes consultant.

Mine were always timed irritatingly close to Christmas as a child, so even to this day, certain jingly Christmas songs still sound like a sulky drive to the hospital in my school uniform, wishing I’d been made to howl my way through a solo of Little Donkey in front of two hundred kids instead. Anything. Anything but diabetic clinic.

Probably due to the old-fashioned, patronising experiences of clinic in the past – which, fortunately, have long since moved on to become more empathetic – there’s something which still inflicts a sense of panic and emotion when I have to go from door to door along the corridor to be weighed, questioned, stabbed in the finger, poked in the feet and, finally, stabbed in the vein (if I haven’t already had a full-blown panic attack by this point and run away to the car to get my breath back).

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“Can’t sorry, I’m not here.”

For others who can relate, I’ve broken the visit down into stages so we can just look at it bit by bit and remember that no one is there to judge, only to help.

Looking at it in little baby steps can help to make the whole process feel less intimidating.

  1. The weigh-in and fingerprick test

To most people, this would be perhaps the least worrying part of the appointment but for me it’s probably one of the hardest: the weight check. As someone who’s struggled with eating disorders (more on the startling links between type one diabetes and eating disorders later), hearing my weight aloud can be hell. I’ll dread it for weeks. And, despite my best efforts to ask medical staff not to tell me my weight, one of them will fail to get the memo and there it’ll be in stark black and white on the page in front of me. And if it’s a number I don’t like, that can ruin my mood from the start and trigger negative behaviours.

If you’re the same (and don’t worry, it’s more common than you think!), make sure you say to each member of staff that you don’t want to hear or see your weight, even if that means keeping your bulky folder of notes out of sight while they talk to you. It might seem trivial or embarrassing, but if it makes things easier for the rest of the visit, they’ll understand. While you’re on a long, long waiting list for help with recovery, don’t beat yourself up if things like this are tough.

Secondly, the fingerprick test. The only advice I can give you here is bring your own lancet device. I don’t know who the hell makes those disposable ones they attack your fingers with, but it feels like getting your fingers stapled by a sodding toddler. Also, reject the cotton wool. No one wants a tuft of what looks like rabbit fur stuck fast to the end of their fingertip.

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  1. The nurse’s chat

Next, you’ll chat to the nurse about how you’ve been and about how you feel your blood sugars are at the moment. It’s very similar to what you’ll do later on with the consultant, but it’s here that the differing roles of doctors and nurses become apparent – your nurse wants to know about you and how you’re coping with any perceived problems, then the doctor will work with you to find the solution.

I don’t mind the nurse visit. I like my nurse. I’ve sobbed on them after break-ups, begged for ED help and lost my temper over my inability to inject myself during my teens. These are the ones who’ve probably seen you at your worst and helped you emotionally to get back to your best. Mine deserves a medal for the amount of times I’ve cried in front of her about stress and really mean boys.

So talk to them. Diabetes is bloody hard sometimes to try and manage 24/7, so don’t be afraid to be completely honest if you feel things aren’t going so well. You’re a human trying to do the job of a pancreas that won’t work and they have the empathy to understand that. They’re there to support you, and damn it feels good just to let someone know what it’s like when your blood sugars are wilder than Justin Bieber’s 2016 Snapchat story.

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  1. The foot check

There are three things guaranteed to happen at the foot check:

  1. You’re wearing really shit socks
  2. You’ve forgotten to cut your nails
  3. You have the feet of an ogre

I hate feet. They look horrible, feel horrible (a diabetic’s feet are never warm unless we are running in July or are on fire) and the only thing they’re good for is giving someone an icy shock on the spine when they’re sleeping (if you’re a little bitch like me) or wearing nice, overpriced shoes.

The foot check is straightforward enough. Before, we also had pulse checks, but these are increasingly now carried out in GP’s offices (they could never find mine, even with a machine. I knew I was a bloody vampire). Now it’s just a case of them poking you with a piece of metal and checking whether you can feel it when you’re not looking.

Straightforward enough.

Then it’s pop your socks back on, vow never to wear reindeer socks in June again and shuffle back out to the waiting room with cold feet.

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  1. The consultant’s chat

Some people don’t get on with consultants and some do. I’m lucky in that I have a lovely consultant; he’s very understanding and in tune with his patients (and has just as much empathy as the nurses), but I know this isn’t always the case and some can come across as a little too clinical. If you’re one of the people who doesn’t really click with their consultant, just remember that while they may come across as cold, they’re the key to a treatment plan that can really help you in the long-run.

Be honest and work with your consultants rather than against them. They need you to be honest so they can tweak your treatment to suit you. Remember, they’re on your side!

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  1. The blood and urine test

This takes us to the final stage. Like the foot check stage, there are also three guarantees at this point:

  1. You don’t know the meaning of ‘walk of shame’ until you’ve had to walk past a waiting room full of people and passing hot junior doctors whilst clutching a pot of piss.
  2. You’re wearing impossibly tight sleeves that just won’t roll up above your elbows.
  3. You really, really don’t like needles.

It’s a running joke with my friends that I’m a needlephobic diabetic with three tattoos, but in reality, needle phobia is extremely common amongst people with diabetes. If you think about it, why shouldn’t it be? Diagnosis day was probably one of the most traumatic days of your life. Suddenly you’ve gone from worrying about how much shorter you’re going to hack your Barbie’s hair to worrying about having to inject yourself 4+ times per day. You’ll have been stabbed and prodded endlessly, hooked up to wires and bled over and over. Something in your brain is naturally going to get a bit funny about being made to sit back in that plastic chair with a tourniquet on your arm.

But this is the last part before you can bugger off and go home to watch Homes Under the Hammer (or go back to work). My advice for you, if you’re also a bit funny about getting prodded, is bring a friend. Peer pressure init.

The urine bit is easy. I don’t really need to elaborate here, do I? As for bloods, bring your (non-squeamish) friend in with you, talk absolute rubbish for about 30 seconds and before you know it, the cotton wool is pressed down and it’s all done and you can both hit the overpriced hospital café for a latte and a chocolate brownie. It’s all done for another year (or six months with the pump). Hooray!

Cross it off your calendar, give yourself a pat on the back and remember to calculate and bolus for that latte and brownie.

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“Don’t make me diabetes today.” – Diabetes Burnout Explained

If you have experience with type 1 diabetes, you’ve probably noticed the words ‘diabetes burnout’ popping up more and more on sites for different diabetes support organisations or on social media. Perhaps you recognise it as something you or someone you love has been through. If you’re unfamiliar with the term however, you’re not alone.

According to statistics from leading charity Diabetes UK, as many as 44% of type 1 diabetes patients suffer from burnout relating to their condition at some point in their lives; however, statistics could be even higher as there is so often a stigma and guilt surrounding what we deem to be ‘neglect’ of our condition, and many of us keep it a shameful secret. Not managing to keep things out of control because of the sheer overwhelm is all too often dismissed as ‘rebelliousness’ or ‘carelessness’.

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I for one have had experience much earlier on in my diagnosis of the wagging finger in the endocrinologist’s office telling me to sort it out and get that Hba1c level down. One doctor pointed out my oh-so-cool-at-the-time scene hair and checked Vans and said: ‘You chose to dress like that, right? Choose to sort your blood sugars out. It’s your responsibility’. I was fourteen at the time; more concerned with when the next issue of Kerrang! was out and wondering whether the really pretty guy from 8U still thought I was a stalker than worrying about whether I’d remembered to take my Lantus shot. I grunted and left in the same huff as I always did after clinic appointments, shoving my headphones into each ear. What did he know? He’d learned it all from a bloody textbook.

Where did the consideration for the actual mental burden of diabetes come into this? Numbers are logical, taking insulin to lower blood sugars is logical, but where was the logic in not expecting our brains to totally frazzle with the sheer pressure and responsibility of trying to manage such a demanding condition on top of the stresses of everyday life?

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Fortunately, diabetes mental health care appears to be slowly improving and is being talked about more and more as part of treatment. Last year, it was ‘diabulimia’ that was brought to the forefront (I covered this in an article for The Independent last year),and now both patients and health professionals are starting to address ‘diabetes burnout’: the sheer mental toll a 24/7 condition can have. This week I was delighted to see new resources on the subject made available from #SERENConnect (look up the hashtag on Twitter; they’re doing some brilliant work) and am always interested to hear about new developments in transitional care from children’s to young adult’s diabetes services, which is where so many of us are likely to feel abandoned.

However, when burnout does happen, it can be difficult to address. We often feel a huge sense of responsibility and guilt, which stops many of us from speaking out. Even though I like to write positively about diabetes and focus on the good things that we are still able to achieve, none of us are immune to being completely exhausted from the endless fingerpricks, needles, cannula insertions, numbers, carb-counting, moodswings, circulatory problems, sleep disruptions and seemingly endless appointments; not to mention the effects on our blood sugars from things like exercise, alcohol, stress, food, illness, travel and changes to our everyday routine.

And unlike Love Island, you can’t simply feel pissed off at the stupidity of it all and then switch it off for something more pleasant. It’s a full-time commitment.

Despite my go-getting attitude when it comes to taking on challenges and not letting diabetes get in the way, I recently hit a point of burnout following a stressful unexpected event at the end of last year. I stopped sleeping. I cried a lot. I couldn’t even run to clear my head (the very thing which usually make me feel empowered and in control of my body) because I was too exhausted. The thing is, diabetes doesn’t just adapt when life doesn’t work out as expected. Just as your world gets turned upside down, so does your diabetes control, and having wildly fluctuating blood sugars to try and manage on top of having to deal with unexpected events can feel incredibly overwhelming. My blood glucose monitor had taken several hard thwacks against the wall since I turned up on the doorstep of my family home last New Year’s Eve, à la Bridget Jones (minus the turkey curry and the brooding Colin Firth in a reindeer jumper).

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It wasn’t until then that I realised still how terrifying it is to ask for help. You instantly assume you’ll be judged. You’ll have the wagging finger and the telling off for being such a naughty, lazy little girl (I forget sometimes that I’m 27). Deep down I know that my diabetes team would no doubt have helped me out. I’ll always remember one nurse during a time in university who gave me a massive hug and spent half an hour just building my confidence when it came to study and relationships. No lecturing. No chucking me out of her office. Just a very human, understanding response that motivated me to make the changes and let me know I was supported (plus she called one of my exes from uni ‘an absolute frog’, which made me burst out laughing for the first time in a while). But still, sending that email and asking for help is more terrifying than any race I’ve run, exam I’ve sat or travel I’ve done. It ended up consigned to the ‘drafts’ folder of my emails every single time.

I spoke to other people with type 1 diabetes about the subject and was astounded to find that every single person, even if they don’t name the term directly, described the experience of burnout at some point in their lives with the condition. And so much of it came down to the feeling of being totally alone with it.

One of the people I spoke to, Sian*, has lived with type 1 diabetes since she was 8 years old. She is 28 now. She told me, ‘I think mental health provisions should be part of all hospital clinics. I know this is the norm for some hospitals but it definitely isn’t for all.’ On the subject of care in her area, she also described the experience of moving straight from children’s clinic to adult’s clinic as a massive factor in feeling isolated with her condition, stating that the lack of people her own age there made her feel increasingly abandoned. In the UK, there are now many ‘young adult’s’ clinics and more transitional care, but this is still not the case in some areas.

Laura*, diagnosed when she was 9 years old, recognised that her feelings of overwhelm were also related to feeling very much alone with her condition. She says, ‘I know it would have been a lot easier to be able to speak to people with diabetes. Though I eventually did find people through friends and through Twitter, it would have helped back then; especially from about the age of 12. I ended up getting into the habit of bad control. I was put on a course with my hospital but there were only four of us and it was a bit awkward.’

So what is being done to tackle this? Diabetes UK now run groups and events for people with type 1 diabetes to meet each other, which is helping to tackle this recurrent theme of feeling isolated. These don’t necessarily have to be directly related to diabetes; there are all sorts of events available, from days out to cookery classes. You might not need to talk about and focus on diabetes all the time, but sometimes it’s just a help to know that the person next to you gets it when you’re having an off day.

For more information on getting involved, please see the Diabetes UK website.

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So, how can we learn to recognise the signs of burnout? Some to look out for include:

  • not testing blood sugar levels.
  • skipping insulin.
  • becoming withdrawn/depressed.
  • feelings of overwhelm.
  • feelings of isolation.
  • becoming angry when the subject of diabetes is brought up.
  • changes to eating habits (e.g. eating a poor diet or skipping meals altogether).
  • appointment letters mysteriously fluttering, unopened, into the recycling bin.

And what do we do once we’ve recognised that burnout is happening? It’s all well me leaving you a checklist of things which make sense (e.g. talk to health professionals, get in touch with organisations, speak to friends and family), but deep down we all know these are the right answers; they’re just not easy to do. Sometimes we just need to start small.

What about the little day-to-day things you can do when things feel difficult?
Sian says little treats like a glass of wine and a movie night or some yoga really help her to enjoy things outside of just focusing on diabetes. She makes sure she’s always planning treats for herself to look forward to. I can’t emphasise how important this is. When people work hard all year, they splash out on holidays, right? But what about that one job that’s 24 hours a day, 7 days a week? Why don’t we reward ourselves for the work we put in to manage diabetes? You wouldn’t expect yourself to work without a break or any reward, and you should treat your diabetes the same. After all those injections, appointments, infusion site changes, hypoglycaemic episodes and missed hours of sleep, you bloody well deserve deserve to spoil yourself now and then!

Do something that makes you feel great. Go to a gig. Invite friends round for dinner. Sign up for that didgeridoo class (I’m not even joking about this one; I’ve genuinely agreed to it). Give yourself some mental freedom for a bit. I recently splashed out on drum lessons for absolutely no reason other than that it just looks like a damn good release to hit things and still look cool doing it (and because secretly, deep down, I still want to be Travis Barker, only without the mohawk). And for that hour, testing my sugars didn’t even cross my mind. I just got totally immersed in trying to get the rhythm right. I felt normal.

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And when things get really overwhelming and start to impact across all areas of your life, take a deep breath and be brave. Pick up the phone. Send that email. Sit your parents down. Tell a friend over coffee. Get in touch with a support group. Reach out to your nurses. Find a counsellor. Just get support. Loneliness and isolation is a huge factor in burnout, but the truth is, you’re not alone. We’ve all been there and we’ve all got your back.

The numbers on your blood glucose meter do not define you. The numbers cannot tell you that you are a failure. Remember, you’re not a machine and you’re not Batman — you’re a human trying to cope with everyday life as well as doing the job of a malfunctioning pancreas. That’s a pretty big deal. Give yourself credit for doing the best you can do.

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Online support for diabetes burnout is available at:

Diabetes UK support forum – https://forum.diabetes.org.uk/boards/?_ga=2.215299799.1114322270.1529132326-233605192.1529132326

Beyond Type 1 app – https://community.beyondtype1.org/landing?space_id=139402

‘Diabetes? What, the bad kind?’ – Type 1 Diabetes, an Overview

Let’s get one thing straight when we teach others about the condition. Type 1 diabetes can affect anyone. This isn’t a condition strictly limited to those who are overweight, or eat a diet high in refined sugars, or are of a particular race, gender, nationality or age. It isn’t caused by lifestyle choices or anything anyone did or didn’t do. Remember that. There is nothing you could have done to prevent it from developing. Your diagnosis was absolutely 100% not your fault, no matter how anyone may try and make you feel. Often, that blame is due to misrepresentation (I’m looking at you, media) and misconception.  

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“NO, WE DIDN’T GET IT BY EATING TOO MANY DAMN SWEETS.” [Photo by rawpixel.com on Pexels.com]

 

With type 1 diabetes, your immune system starts to attack the beta cells in your pancreas which produce insulin. No one knows why this happens. It just does. A bit like when you wake up some mornings and want to punch everyone in the side of the head just because it’s Monday and your mam’s forgotten to buy teabags. None of the choices you’ve made have contributed to this problem. And as diabetes is non-contagious, you won’t have caught it from anyone either. For some reason, something just caused your immune system to go a bit strange and start destroying something it didn’t need to. There’s currently a lot of research being carried out on what might have created this problem, and so far all we know is that there may be hereditary factors involved (though there are a number of other factors under consideration too), and more work is being carried out to find out what sort of culprits we could hold accountable. For example, there could be evidence to say that viral infections or toxins may have had a part to play.

I feel like I’m the only person dealing with diabetes. There’s Aunt Mabel, but she’s type 2…

Diabetes can feel extremely isolating when you’ve got so much responsibility put upon your shoulders to manage it, particularly when you take into consideration all the other things you have to deal with as a teen or young adult: puberty, exams, friendships, relationships, drinking, sex, college, university, arguing with your parents, or the new season of Game of Thrones (tension, init).

It wasn’t until years later that I met other people with diabetes and have since formed great friendships with people who all understand the struggles, but keep on being awesome at what they do. One has released an album and tours venues internationally. One is a bodybuilder. One runs a successful magazine. I managed to come out of my Masters degree with the Distinction I wanted too. One thing my friends with type 1 diabetes all have in common, apart from their diagnosis, is that they’re all fantastic, go-getting people in their own rights who see themselves first and manage the diabetes second. This doesn’t mean letting go of control or self-management and chucking all your insulin pens in the bin to go and pursue your dreams of being the lead singer of a heavy metal band (by all means go for it, just take your insulin with you). As tiresome as it is, you need to make sure you’re in control of your diabetes, not the other way around. Don’t let diabetes dictate how you feel about yourself as a person.

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Maybe you haven’t met others yet who share this experience with you. I tended to find that support groups and meetups were often directed at younger children and these would be centred around summer camps and things where they could form friendships from a young age. What if you never had this as a kid, and now you’re too old for sitting in bowling alleys with six-year olds, bolusing together for Slush Puppies? Also, I didn’t want to be made to sit in a room with other diabetics and talk about being ill. I just wanted to go out, have fun, and know that if I was having a bad day, these guys would 100% understand because they’d all been there too.

According to JDRF, approximately 400,000 people in the UK are currently living with type 1 diabetes in the UK, 29,000 of whom are children. This number is increasing by a rate of 4% each year. That’s a lot of needles and test strips and bottles of Lucozade glugged in the sweaty darkness of a midnight hypo (or, more commonly, half of the fridge in a befuddled and desperate attempt to stop the shaking and bottomless hunger).  

Part of the reason for this blog is for you to understand that though it might feel like nobody quite gets it, there are others out there going through those same struggles that you are. There are people out there sharing your bad days when they happen, and sometimes just this thought alone can be a slight comfort. Reach out to people where you need it. Trust me, isolating yourself even further will only make things worse, so even if you can’t face looking up a local Diabetes UK support group to go to, contacting a helpline or joining an online community (JDRF TypeOneNation is an excellent example – for a full list of organisations, groups and communities, please see the back of this book), maybe try searching for blogs by other young adults and teens with diabetes. You might be surprised to find how many there are; there’s a whole wealth of honest, tell-it-like-it-is accounts of how to live your life to the full with diabetes, even when life throws its little dramas in the way.

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What’s making my blood sugars go a bit Charlie Sheen?

When you have type 1 diabetes, your blood sugar levels are too high. This is because those beta-cells we mentioned earlier have stopped producing insulin. Insulin is a hormone which transports all that glucose in your blood to your cells. So when you eat a meal, the glucose which is then present in the blood is transported to the cells to use for energy. With diabetes however, there is not enough insulin to shift this influx of glucose, and so it cannot be stored for energy. This is why when our blood sugars run high, we might be found snoring across our desks with another empty bottle of Evian clutched in our hands. Your body will try to reduce your blood glucose by flushing all that excess glucose out in your urine.

Never great when you’re on a five-hour plane journey and you’re caught in the window seat next to a heavy sleeper.

On the other hand, once you start insulin treatment, there’s the other extreme you have to look out for: hypoglycaemia, or low blood sugars. This is that phenomenon that has you shovelling Frosted Shreddies into your mouth in your pants at 4am, cereal spilling all over the floor as your hands shake on their way out of the box. This is the condition that most people seem to be somehow aware of, yet not understand fully if they’ve only seen it fleetingly on a particularly dramatic episode of Casualty.

Why injections? Why can’t I just have tablets?

Insulin must be injected into the bloodstream in order to treat diabetes. I know, I know. You never do forget that moment when the doctor perches himself/herself at the end of your hospital bed and says, ‘You’ll have to inject insulin every day.’

Injections aren’t nice. Perhaps you may even be needle-phobic (don’t feel stupid – it’s actually surprisingly common in people with diabetes. I even needed over three years of therapy to get over my fear of blood tests and couldn’t inject myself for four years. Plus I have three tattoos, which makes it all the more ridiculous. More on the topic of needle phobia later). You hear of Type 2 diabetics taking tablets to manage their diabetes, so surely we can just do the same right?

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Unfortunately, we can’t. More research is being done to develop oral insulin, but until then I’m afraid it’s a case of screwing the needle cap onto the pen and sticking it in your abdomen/thigh/arm/bum (I’d recommend you don’t do the latter at the table in the middle of a busy restaurant, especially when on a date). You can also opt for the insulin pump, in which case you’d be using a needle once every three days to change the cannula on the infusion set, but as a type 1 diabetic the needles can’t be avoided. Insulin is a protein, which means that if we swallowed it as a pill, our stomachs would simply break it down during digestion. This is why we need to inject it directly into fatty tissue.

 

People tell me horrible things about complications, and I see it on the news too. Will my feet be amputated? Am I going to go blind? Doom.

Okay, okay, stop. Take a deep breath. The scary stories can get to me too sometimes, but just remember, a lot of it is sensationalism. That’s what makes a great headline.

While it’s true that uncontrolled diabetes can give rise to complications such as kidney disease, foot problems, nerve damage and retinopathy, you’re not ultimately doomed to suffer all of these things. I used to be exactly the same. I still can’t watch programmes which claim to expose the “shocking truth” of diabetes, because I know half of it is worst-case-scenario stuff meant to scare me, and it usually succeeds. But just remember, when these programmes do this, they really do focus on the worst possible scenario and they’re taking into account type 2 diabetes as well as type 1. It takes years of poor diabetes control to cause this, so don’t freak out it you get the odd high blood sugar level now and then. Your toes won’t drop off because you miscalculated your bolus for an extra scoop of Ben and Jerry’s, or because you forgot to plug your pump back in after the shower for a little too long.

And even if you have had poor blood sugar levels for a little while, don’t start believing it’s too late to do anything about it; please don’t let other people try and tell you that you have no future other than horrible complications and treatments and pain. One of the aims of this blog is to help you to relax a bit, get things straight, get you to stop being so damn hard on yourself and show you that you’ve still got as much as a chance as anyone else to achieve exactly what you want to achieve. It’s about learning to live with diabetes, rather than see yourself as having to fight against it. You’re not defined by the numbers on your blood sugar meter.

This post should hopefully have helped you get a little more understanding of the condition if you’re newly-diagnosed, or if a family member has been diagnosed, or even if you just want to know more about it. It might not feel like it now, but life doesn’t have to stop when your pancreas does.

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“Oh, but it’s probably just a touch of teenage angst…” – Your Feelings and Diabetes

One minute you’re watching a film with your friends, eating a large Dominos to yourself and drinking what feels like your fifth gallon of Coca Cola, and the next you’re hooked up to an IV in between crackly hospital sheets with a doctor telling you you’ve got to stab yourself with a needle every single day for the rest of your life. Yesterday you were you. Tired, thirsty, thin, but still you. Who are you now but a patient? Who are you going to be in the future? What sort of future have you even got?

A few years later, you’re knackered with it all, can’t take any more of the relentless weight of responsibility, and a brusque nurse scowls and tells your mother that what you’re going through is just teenage angst. It’s typical adolescent rebellion.

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Teenage angst? Is that what we call the frustration we feel at having to repeatedly count every single carbohydrate on every single plate, in every packet, in every cold glass of rosé on a Friday evening? If we give ourselves just one little moment’s break from testing sugars, or changing injection sites, or calculating the carbs in a slice of Victoria sponge on your mum’s birthday, are we then criminals, raging against our duties as diabetes patients to dose up our insulin perfectly and get shining Hba1c results?

Unfortunately, to some (very few, fortunately) medical professionals, you might have felt you were a file full of medical notes, just one of the many cases they have to get through in the day. It’s happened to me on two occasions during my childhood before I was old enough to attend young adults’ clinic and be treated like an actual individual. I’m lucky to have a fantastic team now who can never do enough to help me, whether that’s arranging an extra meeting to smoothe out a few problems, or just checking up on me via email when needed, but not all the staff you encounter might have been so helpful. There are some who will learn about diabetes from a textbook and fail to understand that we are more than just a broken pancreas, or a scattering of blood glucose readings on a chart. There are those who seem to have forgotten that we’re human.

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One particular nurse once invited me to an ‘important appointment’. I’d already been to diabetic clinic a few weeks’ before, so I had to take another morning off school to go, which stressed me out enough when my GCSEs were just weeks away. Mam said it was important. The letter said it was important. What if they’d found something terrible in my test results? Was it my kidneys? Were my blood sugars that bad after all? I said nothing in the car on the way there.

Half an hour later, I found myself in the ‘Education Room’ of the diabetes unit, perched on a chair which formed part of a circle of teenagers and their parents. The nurse, plump as a hen and smiling grimly, sat in the middle.

She introduced one of the girls. I can’t remember her name, or what she looked like, only that she had an excellent Hba1c result and near-perfect blood glucose control. The nurse deemed her a ‘good diabetic’ and she smiled. I decided I didn’t like her. And then the nurse turned to me, smiling slyly.

‘And this is Natalie. Natalie is an example of those of us with poor control. Those of us like Natalie can learn today from others here whose results are good.’ And then she announced my Hba1c results to the whole room.

I sat in the chair a moment, reeling, as all eyes swung towards me. They were judging me. Judging me for something I never asked for. I swore just about audibly and stormed out of the room, sobbing and burning with embarrassment and rage all the way down the corridor, down the stairs and out of the building. I stayed howling in the car park until Mam managed to catch up with me.

Did that woman embarrass me in front of all those people? Did she brand me bad at something I never even asked for? I hadn’t ever wanted the responsibility of type 1 diabetes in the first place. I never asked to learn how to be a pro at injecting myself, or trying to chase that fine balance between high blood sugars and low blood sugars, and I already had enough on my plate to deal with: diabetes doesn’t stop or get easier just because you’re about to sit your GCSEs, or you’re getting bullied at school, or because you’re moving out of the family home and you’re all of a sudden packing your life into boxes. You still have all this, plus a non-functional pancreas on top of it. I wanted out of diabetes. I wanted it gone, and I knew I couldn’t ever get rid of it, so I could do nothing but wail in the car, sobbing into my palms and knowing from the familiar raspy thirst at the back of my throat, that there was never going to be a single day, minute, or even second’s respite from it.

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Do you find yourself relating to that helpless anger? Have you also experienced judgement from either a medical professional who judges you purely on your numbers or perhaps a colleague who sees you trembling with a packet of sweets in your clammy hands and sneers that you’re ‘not the best diabetic, are you’? Unfortunately, we do encounter people like this, and sometimes those people should be the ones looking out for us. These should be the people who see us as human beings, not diagrams in medical textbooks or sensationalist stories on TV.

On reflection, this woman was hardly ‘professional’ and I’m glad I never encountered her or any other nurse like her again. I knew she was in the wrong when my mother didn’t even bother to tell me off for telling the nurse to eff off.

You’re not ‘rebelling’ for feeling angry. You’ve got every right to feel angry, or sad, or confused, or frustrated. You are not weak, stupid, incompetent, childish or stubborn for feeling the things you feel when you’re dealing with this every day. If you’ve ever launched your blood glucose tester across the room in fury and watched the battery ping out of it as it hits the wall, that’s okay, I’ve been there too.  If you’ve ever scattered your needles on the kitchen floor in a rage, or punched the little violet-shaped bruises on your leg in fury, or slipped your diabetic clinic appointment letter into the recycling before Mam and Dad see – yep, been there and done that too.

Put it this way. Imagine if we had to work 24-hour shifts, 7 days a week, 365 days a year without a single day off. No time off for Bank Holidays, or Easter, or Christmas. No leeway if we’re sick and perhaps coping with a stomach bug or the flu. In fact, sickness makes the hard work all the more difficult. You can’t ever hand your notice in either. You have no choice but to work forever without a break. How would you feel? Exhausted? Tearful? Angry? Depressed? Helpless? I clearly remember being in my student bedroom at university and breaking down at my desk, tossing my new and useless antidepressants into the bin, and then throwing in a howling tantrum for good measure.

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The funny thing is, some people who know me would describe me as ‘calm and fairly reserved’. But back then, behind closed doors, it was like pulling a mask off.

And while I can’t tell you that I’ll take diabetes away for you, I can tell you that you can make things better for yourself, slowly. It takes time, patience, acceptance and above all the ability to stop being so bloody hard on yourself. You aren’t a failure for wishing you could quit, and you are worth so much more than the numbers on your blood glucose meter.

You’ll feel all sorts of emotions as you go through life, but with diabetes, your blood sugars can sometimes have the biggest impact on your mood (and this is all the time, not just during the diagnosis stage). You may find yourself feeling the following:
Angry

Probably the predominant feeling. Of course you’re pissed off. The weight of responsibility that diabetes carries with it, on top of the pressure of everyday life, mean that you may feel angry more than anything else. Also, how often have you got shaky, sweaty, confused and flustered during a hypo only to lash out unintentionally? How often has a high reading and the inevitable raging thirst and utter exhaustion left you furious with absolutely nobody understanding why you’re acting like a cross between The Grinch and Medusa? Of course you’re angry. Allow yourself to be angry. Punch pillows, cry, scream, then breathe. It’s okay. Everyone will have experienced ‘diabetes burnout’ at some point.

Sad

Things can feel a bit overwhelming, can’t they? I usually find that I get most sad and anxious around the time I know a diabetic clinic appointment is coming up and I’ll have to give blood (more on needlephobia in another post), or another appointment letter falls through the letterbox asking me to attend an ophthalmology clinic or after my blood sugars have been running high for a while and I’m just generally a bit more weepy and exhausted. This is most common with those who were diagnosed at a later age, and suddenly they may find themselves yearning for the times when they didn’t have to worry about carb-counting their lattes or trying to discreetly test their blood sugars at the edge of a nightclub dancefloor in the dark. Sometimes it’s the isolation that diabetes can bring. Again, it’s totally okay to feel sad. Don’t guilt yourself into thinking: Well there are others who have it far worse!

Your feelings are valid. Don’t try and repress them. You’re human, and you need to give yourself the permission to feel.

Afraid

‘Did I take enough insulin for that?’

‘Have I packed my glucose?’

‘Have I even taken my long-acting insulin at all today?’

‘Argh! Insulin pump out of batteries!’

‘Ugh…it can’t be injection time again…’

‘My HbA1c results are rubbish…I’m just going to end up with bad kidneys aren’t I?’

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Photo by rawpixel.com on Pexels.com

Any of the above sound familiar? Diabetes is a constant worry. There are so many things to consider all the time, it’s a wonder there’s any room in our brains for anything else at all.

My biggest scares so far have included losing a suitcase full of insulin on a trip abroad, accidentally giving myself eight times my normal amount of insulin by mixing up my long-acting and short-acting doses (don’t try to work out an A level Chemistry equation at the same time as injecting), ending up in hospital with a nasty bout of flu which made my blood sugars go off the meter, and losing all feeling in my legs (and weirdly, my tongue) during a particularly nasty nighttime hypo on a trip away one night which had me sliding whole sachets of sugar into my mouth in a desperate attempt not to pass out.

Diabetes is big, and it’s scary. It’ll keep you on your toes at all times. But remember, for every scary moment there’s a lesson you’ll learn to prevent it happening again. For example, I started noting down on my phone whenever my background insulin had been injected to make sure I never did it twice. I started setting alarms so that I wouldn’t forget it altogether. And I now carry batteries with me at all times in the event that I’m on a night out and suddenly find myself in dire need of a AA Energiser battery while my insulin pump starts playing its weird Fur Elise low-battery warning tune in the middle of Thriller.

Powerful

Er…what? What part of stabbing myself for a packet of Walker’s crisps is supposed to make me feel ‘powerful’?    

Let me give you an example of one time diabetes enabled me to feel more ‘powerful’. On 28th May 2018 I did what I never, ever imagined I’d be able to do as a type 1 diabetic: I completed the Edinburgh Marathon. Not a half marathon. The full, gruelling, mentally and physically draining 26.2 miles of running.

A marathon is a huge achievement for anybody regardless of whether they have type 1 diabetes or not. As someone who forever failed at PE and was last to be picked for sports teams, a 4:15 finish for a first marathon would have felt incredible to me anyway, but to have completed that through the challenges of four separate hypoglycaemic attacks around the course (shoutout to the kids at the roadside who brought me jelly babies), a heavy insulin pump pulling my shorts down and stopping on the side of the road to test my blood sugars every hour, crossing that finish line felt phenomenal. I was in control, and diabetes couldn’t stand in my way (advice: if your pump is likely to pull your shorts down when out on a run, do not wear Sesame Street underwear).

I’d never felt more me. I was so much more than my highs and lows.

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I’m not saying you have to go and run a marathon to be able to achieve this feeling. That was just my personal goal. I’d put in the hard work, made some mistakes along the way in training which I suffered for later, but despite the challenges I’d learned lessons and not given up. Make a list of the things you’ve always wanted to achieve. A particular job you’ve always wanted to do? Join a sports team? Write a book? Travel? Do your research, make a plan, get prepared and go for it.

It doesn’t even have to be anything this big: little wins every day all add up. Something as simple as managing to bolus your insulin correctly for a pizza and ice cream (far harder than it sounds), returning to something you once enjoyed before diabetes or just having a totally normal day out with your friends are all going to make you feel far better than shutting yourself off and beating yourself up (and if that stuffed-crust pepperoni causes a blood sugar spike, there’s always correction doses to save the day). Whatever you want to do, don’t let ‘I can’t, I’ve got diabetes’ so much as cross your mind.

You may have more to consider with diabetes, and you may find yourself up against more challenges than if you didn’t have diabetes at all, but trust me, with a bit of work and faith in yourself you can do it. Reach out for support, talk, prepare, plan, and do what makes you you. Your diabetes nurses are there to help you. Charities and peers are there to help you too (check out the Type 1 International’s snail mail scheme and the Diabetes UK support groups, forums and events) You’re human, your feelings are valid, but you don’t need to be a superhero to go for the things in life that you want. After all, you deserve it.

 

Natalie Ann Holborow