Hindsight: it’s 2020

Somehow, I let more than a year go by since my last post – I want to say ‘I’ve been busy’ but let’s be honest: we all know that’s a lie. Pre-covid, however, I did undergo some big life changes. Most significantly, I finally started as a trainee solicitor and have now been in my job for more than a year. There are blog posts to follow about my transition into working life, but there’s something of an elephant in the room that I really must address – flares have made a comeback.

Just kidding, it’s obviously Covid-19 (although we really should talk about the flares).

We’re all sick of hearing about it, sick of talking about it and certainly sick of worrying about it. But for what it’s worth, I wanted to share how the last six months have been for me as a young person, a young professional and a young woman with diabetes.

I have to hold my hands up – I fell into the category of people who, upon first hearing about Covid arriving in the UK, really believed that it would somehow be fine. There couldn’t possibly be a lockdown here, things could never get that far. Of course, I was very wrong (although I am still proud to say that I didn’t fall into the trap of stock piling loo roll).

Over the course of a few days, I went from living my normal life, going to the office, seeing my friends, living in Glasgow, to working from home back in Dundee in lockdown. It was so far removed from my anticipated reality that I almost couldn’t believe it was happening, even as it happened right in front of me.

I will admit to having enjoyed the opportunity to spend more time at home with my family. In the midst of a reality so scary I couldn’t begin to comprehend it, I got some valuable time with my Mum and Dad that I thought I might never have again after starting my job. It was exactly where I needed to be, and despite everything, we really did enjoy the time together. I would also say that my work did their very best to keep everyone connected and upbeat, and I feel very lucky to have been able to continue working from home, learning and progressing as best I possibly could.

But it was still hard. It’s hard to have only just joined the workforce, started to feel like you were making connections and learning the ropes, only to find yourself in a situation no one could possibly have imagined a few months before.

In addition to the array of common concerns in relation to the pandemic (and I don’t mean to belittle those very valid concerns in any way), diabetes added its own dimension for me personally. I’ve never thought of myself as any different to the people around me. Despite a chronic health condition which takes constant management, I’ve always remained as healthy as anyone else in every scenario of my life. It was a completely foreign concept to find myself in an ‘at risk’ category. As a young person, I was expected to be unconcerned about the possibility of getting covid. You could hear unintentional sighs of relief in the media when younger people seriously ill with covid were explained away by their ‘underlying health condition’ – funnily enough, it just didn’t make me feel all that much better.

And then there’s the impact of lockdown. As with so many others, I started out with big aspirations for how I was going to use this time when I would no longer be engaging in my usual after work activities. I was going to adopt a fitness regime. I was going to take up new hobbies. I considered learning a language.

Want to know what I did?

I watched fifteen (15) series of Grey’s Anatomy and ate every snack that came within 500 metres of me. With no plans on the horizon, any motivation I had to stay in shape just slipped away. I’ve never been a gym bunny but I’ve always been reasonably active, even just getting up and heading to work in the morning provided me with a fair few steps to start my day. With my general activity reduced to a walk to the kitchen table to clock in, and an exponential increase in snack intake, I found myself both gaining weight and witnessing increased fluctuation in my blood glucose. And I really struggled to care.

Lockdown restrictions are slowly easing (although the rate of that easing is becoming slower and slower as we see regional spikes), and with that increased freedom, I wanted to share what I learned over lockdown. The first thing, is that time with family is precious. I’m grateful for that quality time with my own family, and I’m heartbroken for all those who have lost family in this unprecedented tragedy.

The second thing, and this is becoming something of a cliche, is that I won’t feel guilty for how I handled myself over lockdown. I had a clinic appointment a few weeks ago and, predictably, my hba1c was higher than it’s been for a number of years (although thankfully still at the top end of a safe level). This caused me a moment of panic before the doctor explained that this has been the trend almost universally, and they anticipate it will decrease as I move towards a more normal life. I’ve started to make healthier choices and I’m finding new ways to introduce activity to my working-from-home lifestyle. I now have the freedom and motivation to do that – it’s okay that I didn’t have that for a while. Also, I ran out of Grey’s Anatomy. I’m sure it’s unrelated.

I also think it’s important that we all show tolerance for how people handle the easing of lockdown restrictions. Some people have launched themselves full-throttle into socialising, some people are struggling to stick to rules they see no logic in, and some people continue to feel nervous and just want to take their exit from strict lockdown at their own pace for their own reasons. I probably fall into that latter category, and that’s okay.

I’m sure these thoughts are news to absolutely no one – 2020’s been a hard one. We’re all competing with fear, anxiety, confusion, isolation, and very dry hands (should I have been washing them this much my whole life?). Take care of yourself and cut yourself some slack. In the meantime – I’m very interested to know how you’ve found Covid/lockdown with diabetes. Have you had similar concerns and issues, or have you come upon different challenges? Let me know!

Thanks for tuning in.

Justine

Drinking with diabetes

Once again, I find myself apologising for the long delay. With university finally done and dusted (for good!) I’m excited to get back to blogging properly. This blog is one I’ve written with some reluctance, but also one I’ve planned very carefully. I’ve tended to stay away from writing about alcohol because it’s something I feel health professionals are much better suited to discuss than a 22-year old (now ex-) student. However, I noticed over a series of nights out that how I manage diabetes and drinking is something those who do not live with diabetes are particularly interested in. I’ve also received some direct requests, usually from parents with teenage children with diabetes, to write about the issue. So I decided to give it a bash, but anyone reading who does live with type one should know that I’m neither an expert, nor a saint in this department and you should always consider the advice of a doctor.

That said, we all know that sometimes medical perfection and practical reality don’t align. How you manage the relationship between diabetes and alcohol will often be influenced by how your body reacts to it, and that’s different for everyone. So I decided to ask the #gbdoc what their approach is, in order to offer as wide a range of approaches as possible. I received a lot of great responses and I’m very grateful to those who took the time to get in touch. From this, a range of themes emerged.

For a lot of people, cutting out alcohol altogether was the sensible solution. This was often on the basis that either they weren’t really fussed about drinking alcohol, or drinking simply wasn’t worth the hassle of handling the issues it creates further down the line. This is something that doctors do generally advise and it’s certainly ‘best practice’. But I have to hold my hands up- it’s a no from me. I do believe that there are strategies you can employ that will allow you to have a drink and stay safe. So what did the drinkers in the audience have to say?

It was almost universally stated that alcohol lowers your blood sugars. Often those without diabetes only think of the sugar content of the drinks, and expect the opposite result. This can be true straight after drinking if you’re consuming sugary drinks, but overall it’s very common to find a drop in your blood sugars later on or even the next day. A lot of people were prepared to allow their blood sugars to run a little higher than usual in order to avoid hypos. This meant having less insulin over the course of the evening and often eating before bed. Night time hypos are a common concern and one person even said they have to set an alarm half way through the night to avoid terrible lows. I can’t explain the science behind it, but dropping blood sugars after alcohol is something everyone will have been warned about by their doctors, and the suggestions put forward seem to me to be eminently sensible. There was some disagreement surrounding whether diet or full sugar mixers were the best option- most people stuck to low sugar options and that has always been my preference, others preferred full sugar for the risk of going low. I suspect which you prefer is a matter of your body’s reaction and whether you find the drop in your blood sugars happens immediately after drinking or it takes a little longer.

So what is my personal experience/advice? Well, I have to confess there was only one person who responded and stated that their experience with alcohol is similar to mine. I find that it has very little impact on my blood sugars in any immediate sense, and if anything I run a bit high the next day. I did find a bit of a drop when I first started drinking, but that’s not an effect that has persisted into my 20s. But if I could offer some hard and fast advice that I always adhere to and I feel applies pretty much across the board, then it would be the following:

1. Test, test, test again– People often comment on how regularly I test on a night out. For me, no matter how your body reacts, keeping an eye on things is always a good idea, particularly if you’re trying something new. It’s a bit of a bummer on a night out but generally I find it easy to do- testing every time you go to the toilet, for example, may be something you can make a habit and stick to, without disrupting your night.

2. Stay in control– let’s be honest, we’ve all overdone it at some time or another. But as a general rule- staying aware and in control of your actions means that you can have a good time but stay safe.

3. Make sure the people you’re with are aware of your condition and know how to react- of course, you don’t want anyone to think you’re a buzzkill, but odds are the people you’re going out with will know you have diabetes already or, if they don’t, won’t be put out by you casually dropping it in. Most people would rather know, and know how to help you out.

4. Eat and drink something (non-alcoholic) before bed- I mean this one goes whether you’ve got diabetes or not, right? Never let anyone tell you that chips, cheese and gravy isn’t a legit combination, btw. You do you.

That’s enough lecturing. Note I haven’t tried to tell you what or how much to drink- no one knows your body or your tolerance like you do. This is something I often tell my friends- if I feel like a G&T, that’s great for my blood sugars, but I might fancy a fruit cider (considerably more sugary) and that’s okay too, as long as I keep an eye on things.

To finish this off on a light note, I had to share my personal favourite piece of advice received in response to my request for info on how other people with diabetes manage drinking alcohol-

‘Get most of it from the glass to the mouth…’

Sage, sage advice, my friends.

Wishing everyone a Happy Easter, I hope you enjoy this blissfully sunny weekend and maybe have a G&T on me! (But go easy on those eggs).

Thanks for tuning in!

Justine

TV’s Diabetes Disasters

Happy New Year! Welcome back to Sugarcoated, I hope you all had a wonderful Christmas. Apologies for dropping off towards the end of last year- Uni really took over my life last semester. The good news is that I passed all of my assessments so I’m one step closer to being a lawyer! Admittedly part of the problem with blogging for me recently has been a lack of inspiration. I’ve always tried to keep this blog thematic, sharing useful thoughts, info, and experiences, rather than just rambling. Thankfully over the Christmas break I had time to gather my thoughts and come up with some new content for the new year.

And let’s be honest, it’s January- it’s cold, we’re all skint, and we all wish we were still drinking wine every night and living on a diet of chocolate and cheese. Or is that just me? Getting back to reality in January is something most people find pretty difficult and I’m no exception. Time for a bit of light-hearted entertainment. While I was doing all that reflecting and brainstorming, I also watched a lot of ER, and it really got me thinking about all those terrible diabetes TV drama moments I’ve witnessed over the years with my head in my hands. Here goes nothing- my favourite TV diabetes myths.

1. We all take ‘shots’ with apparently no prior calculation of what that ‘shot’ should amount to. (It’s far more complicated than that)
2. Whatever the problem is, we need some insulin. Insulin is the one and only treatment for diabetes and not having it is the only thing that can make you unwell. (Again, it’s much more complex than that- too much insulin can be equally if not more problematic, in which case more insulin is certainly not the answer)
3. We absolutely cannot have sugar. The tiniest amount could be life threatening. (Tell that to the Lindt Bunny I ate in one go on Boxing Day)
4. It should be immediately obvious if someone is having a hyper. ‘I can smell his breath from here- didn’t you notice he was acting funny?’ says the woman to the man, 30 seconds after her son has eaten an ice cream without having insulin. (Literally no one has ever noticed me having a hyper, I dare say there are some people whose good friends and relatives can tell, and generally speaking I can tell when my blood sugars are high, but you should not ‘smell our breath a mile off’)
5. Everyone who ends up in hospital as a result of diabetes is a Bad Kid™ who doesn’t take their ‘shots’ on purpose to annoy other people. (The challenging and constant nature of diabetes management means that those who end up in hospital are very often trying their best and there are a whole host of reasons why they may have ended up there)
6. Staying in an untreated state of hypo for hours on end, while having seizures, is a totally sustainable state of affairs. (Just no)

The list goes on. I’ve seen some tragically depicted hypos, some truly bizarre treatment choices, and lots and lots of misinformation. Sometimes it’s a little bit funny, because it’s just so wrong- but overall, it’s not really very funny at all. People come to me all the time with misconceptions about what diabetes is and how it’s treated, and I have no problem with clearing those up (that’s part of why I started this blog and, in particular, the ‘Question Series’). But what we’re lacking in the mainstream media is real, honest depictions of people with diabetes, be that in a state of emergency or just in everyday life. I appreciate the need for drama for good TV, I also know that every other medical condition probably suffers the same plight- but I guess what I mean is, for those not clued in on diabetes management, take what you see on the TV with a pinch of salt. Or maybe a pinch of sugar?

Have you seen some TV clangers? Can you recommend any good programmes with accurate depictions of people with diabetes? Get in touch!

Thanks for tuning in!

Justine

Body image

 

Apologies for a lengthy absence, it’s been a busy semester. Our friends over in the states have been celebrating Diabetes Awareness Month, and the 14^th of November marks World Diabetes Day. Surrounded by inspiration, I couldn’t help but put the books to one side to post up here again. This is a difficult one. I’m also very aware that I’ve seen a few similar posts recently and my intention isn’t to copy anyone, it’s something I’ve wanted to write about for a long time but I’ve never had the confidence. Now that I see it coming onto the agenda more and more, I feel like it’s actually an appropriate moment.

I’m a 22 year old woman. Insecurity with your own body is (however ridiculously) almost par for the course- anyone too happy with their thighs or satisfied with their stomach is instantly suspicious. I suspect it’s a trend throughout the lives of many women (indeed, I suspect many men also). What I want to discuss is how I feel that’s different for me as a young woman living with type one diabetes.

Why is that? Because losing weight is hard when part of the treatment for your medical condition is ingesting sugary ‘treats’. There’s nothing so frustrating as hitting the gym hard only to walk out at 2.7 and head straight for the biscuits and coke. And if you go low straight after, it’s almost guaranteed another hypo will follow. Now that’s all considering you even get your blood sugars in the right shape to go in the first place- if I wake up at 4.2 that morning run is out for the next hour at least. Then there’s dieting. Special ‘plans’ are out because god only knows how many points I’d pick up for a day with more than one hypo (which happens). I can cut down my eating but then it ends up being a fine balancing act between cutting back insulin and not leaving myself permanently high because there are no carbs to sustain me while I live my generally active life. I appreciate that many swear by a low carb diet for good control but that sort of lifestyle change isn’t attainable at the stage I’m at in my life, as a student.

The above seeks to illustrate the many conflicting issues many PWD have to deal with to even attempt to lose weight. Of course it’s doable, but it’s harder than it is for many people.

That’s when you take out the lumps and bumps of years of poking and prodding with needles, and the general difficulty of seeing yourself as attractive when you’re connected to a machine through tubing the whole time.

I won’t pretend that the problems I have with my weight and my image stem solely from diabetes- that would be a lie. I like carbs. I like wine. I could write a whole different blog about how wine stops me from losing weight. But T1D provides a range of additional considerations that most people don’t have to think about. Some things are harder to get over than others. Contentment with weight is a fleeting feature in my life, and it’s extremely personal. I can’t tell you to love yourself and be body confident, although I think you should, because I haven’t made it there myself. However I can tell you to love the scars of this condition. Does it frustrate me that I have lumps on my thighs I’ll never get rid of? Of course it does. Do I see people noticing my insulin pump when I wear my bikini on the beach? Of course I do. But I’m beating the odds- my body tried to bump me off and it’s been failing for 14 years. What’s not sexy about that?

Thanks for tuning in!

Justine

Run Down

I want this blog to be positive always, that’s why I started it. But I also said I was going to talk about life- and that means being completely honest. I’ve got a problem, and I’m hoping someone out there can help me fix it.

Recently, my Dad and I took on a 10k to raise money for Diabetes UK. I’m going to level with you- I wanted to do the 10k as more of a personal challenge than anything else. I’ve spent a long time watching other people take on physical challenges and feeling like it was totally out of the question for me to even try due to extremely poor fitness. In the end, I just got sick of it. I knew I wanted to give the 10k a bash and decided that fundraising would be a good way to make sure I did it- you can’t take sponsorship then not show up on the day. My Dad had been running for a while, so I asked him to do it with me, and he agreed.

There are two important things to note before I go on and talk about the challenges I faced, somewhat ironically, in getting my diabetes to the finish line. First of all- in an attempt to raise £200, we ended up raising £795. Secondly, I’m now endlessly glad that my poor, long suffering Dad agreed to do it with me, because he was an excellent running partner and I’m not sure I would have finished without him.

As I said before, I was coming at this pretty cold- I’m not a runner. I was a swimmer at school but it’s now been years since I last seriously swam. When I started trying to train, something became very obvious: my blood sugars were maybe the only thing taking this particular lifestyle development harder than my poor legs. Any attempt to run more than a kilometre resulted in a hypo unless I sent my blood sugars way up high. That’s okay if you’re talking about a short distance run, but I saw myself going out at 16.5 and coming back at 3.5 after a half hour jog. That’s pretty unsatisfactory. As I tried longer distances I found it was a mixed bag between plummeting mid-run and spiking post-run. I just couldn’t get it right. Being truthful, I never really did. On my last few runs I discovered Lucozade could be a helpful tool that could have meant that I could afford to be a little lower when I went out, but it was too close to the day to experiment and on the day I settled for leaving myself sky high and sorting it out later.

Now you might think that’s the end of the fun. Oh no. Your blood sugars are vulnerable to dropping for up to 18 hours after exercise. Mine seemed to pick a different point in the 18 hours every single time, depending on what time I ran, what I ate afterwards etc.

That might seem like a rant, but here’s where the positivity makes a comeback. See I won’t lie and say I loved every minute of the run. I probably genuinely enjoyed the first 6-7k, but I found that 10^th kilometre almost total unbearable. If my Dad hadn’t assured me that I was going to finish then I’m not sure I would have. But at the end, the sense of achievement was incredible. I, who had been so determined that I would never complete any sort of distance run because it’s ‘just not my thing’, who started out unable to get further than 1 km without stopping to walk, had run a whole 10k without slowing to walk a single step. I’d managed to keep up with my (considerably fitter) Dad (Although I do suspect he was slowing down for me). And I’ll admit it, I wanted to do it again. I wanted to do it faster. I wanted to do it further.

But I can’t. Because I can’t send myself up to 22.4 every two days when I want to go for a run. I’ve spent so much time keeping myself out of that region, it’s completely counter-intuitive to force myself up there. So what do I do? I’m so encouraged watching athletes with diabetes achieving really impressive feats. I just hope that someone out there can help me manage my small ones without ruining the control I’ve worked hard to maintain.

Can you help? Do you have your own exercise stories, or small victories you’d like to share? Get in touch!

Thanks for tuning in!

Justine

Talking about diabetes

Reading this blog, it might look like diabetes is all I talk about. In reality, while I’ve never minded answering questions or giving a presentation if asked, talking about it on a personal level can be very different. I’ve noticed some parents expressing concerns about their children with T1D in response to my post about university, hoping they won’t feel ‘embarrassed’ to talk to their friends about it etc. For a long time I really struggled with how to have ‘that’ conversation with friends, flatmates and even my boyfriend.

With a bit of reflection, I think that’s probably not so much a result of any sort of embarrassment, I know having diabetes is nothing to be embarrassed about- it’s just a medical condition like anything else. Rather, I think it feels like an acknowledgement of the possibility that things could go wrong, that I can’t guarantee I’ll always be entirely self-sufficient. And that’s not something I’m entirely comfortable with. I’m a fairly independent person- people often tell me they ‘forget’ I have diabetes because I just get on with things.

I once heard a comedian make a particularly tasteless joke. He said ‘I feel sorry for diabetics, because it’s worse than a cold but you’re not going to die from it’. For a lot of people, that is their impression of what diabetes is. But, unfortunately, it’s not true. Not only is it different from a cold in that it doesn’t (usually) involve physical symptoms, but a daily dose of monitoring and adjusting- it’s something that you can certainly die from, and quickly at that. It’s an important conversation to have with people, what to do if something goes wrong, but that involves admitting that there’s a possibility you’ll ‘fail’ in your monitoring and adjusting, and end up in a dangerous situation. I hate feeling that I’m putting the responsibility on someone else to know what to do if I haven’t done my part properly.

I’m not sure if that’s how everyone feels, I’d expect not. Over time I’ve learned that preparing for the ‘just in case’ isn’t putting the onus on someone else- actually it’s worse not to tell them. I’ve had friends ‘worry’ about what they would do if something happens. Not only is it best for you, it’s best for them and it’s the responsible thing to do. But that doesn’t make it easy.

More recently, though, something happened that really changed my perspective. I started a blog. And a twitter account about my blog- genuinely believing that I would be able to positively impact on maybe just one person, and show them that diabetes doesn’t have to hold you back or make you feel inferior. But I got to do it behind a veil of anonymity that meant I could pick and choose what I wanted to talk about. I joined the ‘online diabetic community’ and with that I realised that I had never really had even one friend with diabetes to share my experiences with. It’s changed how I look at things- seeing this wealth of positivity and support out there. It’s changed how I view that possibility of ‘failure’- I never realised there were already people out there telling people just like me that we are all in this together and something bad happening doesn’t mean ‘failure’- we’re all just doing our best.

I guess the point I’m making is that by talking to others in the same position as me, I’ve become better equipped to discuss my condition with people without feeling like I’m compromising on my commitment to always look after myself properly. Now don’t get me wrong, sometimes I do feel a little inferior to those sharing their perfect readings, but it usually motivates me to work harder on getting things right, and those are usually the same people who are more than happy to share when they’re having a bad day too. And trust me- everyone does.

Have you ever struggled with talking about diabetes? Get in touch!

Thanks for tuning in!

Justine

Everything Uni-d to Know

It’s freshers week- you’ve done the application, you’ve accepted the offer, you’ve picked your electives and now you’ve just moved into halls with people you have already decided are your new best friends. It’s all pretty new and exciting.

Unfortunately, that’s not me. I’m an OAP in the student world, entering my postgrad year after recently completing my degree. But I have learned a few things along the way- and today I wanted to share with new students, prospective students and parents alike the most important things I’ve learned during my time at university, both relating to diabetes and otherwise. Some of these topics were suggested to me via the Twittersphere so thank you to everyone who made suggestions!

1. Alcohol-

This was a popular suggestion and so I decided it’s best to address it. I wouldn’t profess to be either an expert or a saint- your hospital team may have given you advice with regard to this and it is, of course, best to follow it. For example, they may have suggested to alternate soft and alcoholic drinks on nights out. Whatever strategy has been recommended to you, and whichever you choose to adopt, I would make a number of recommendations. It may seem self-explanatory, but make sure the people you regularly socialise with are aware of your condition. I admit that this can be a tricky conversation to have- not necessarily because of embarrassment, but because I personally don’t like to accept that in warning people about my condition, I’m admitting that there’s a possibility that I might get it wrong one day. Nonetheless, I’ve found it’s best to just get it out of the way in an informal way- and overwhelmingly, people are really receptive. They’ll probably ask questions, like what the best thing to do is if you have a hypo, or how they should recognise a hypo. These people are your friends, and so they should want to know how to look out for you.

Secondly, keep yourself in check. I know a lot of people who enjoy going out and getting sloppy drunk. With diabetes in the mix, this is to be avoided at all costs- it doesn’t mean you can’t have fun, you just need to know your limits and make sure you’re always in a position to look after yourself. Eventually, I think you come to know pretty well how your body responds to alcohol and thus how to treat it, but I still test a lot on nights out, just to be safe. I’d also recommend having something to eat when you get in, maybe just a bit of toast (I go for chips usually, but ssshh don’t tell my Mum), again just as a precaution. Ultimately it’s a sad fact that you can’t go on a night out and leave your diabetes at home, as much as you might want to, but by keeping yourself safe and well, it ensures that you can still have fun without running the risk of ending up in a seriously dangerous position. Ultimately, I’ve still had a lot of fun at uni, and kept myself safe.

2. Moving away-

It’s possibly the most daunting part of going to uni. I’m really close to my family and so for me it was a huge decision, but one I have to admit paid off. If you do decide to move away, I’d recommend having an honest conversation with the people you’re living with about the realities of diabetes (just as I suggested above). It’s better for everyone’s piece of mind.

3. Call home- they miss you, and they’re worried about you. Take my word for it.
4. Don’t forget about your pals from home- my best friends are still the ones I made at school, and I’m eternally grateful that we stayed in touch despite the big life changes that uni can bring.
5. Take opportunities-

Over my time at uni I’ve participated in: flute choir, squash, swimming, debating, political societies, the law society- the list goes on. Some stuck, some didn’t. In all of them I made some friends (and one boyfriend) that have lasted through uni and beyond. Whether you moved away from home or not, it’s worth trying new things because even if they don’t work out (turns out you need hand-eye co-ordination to play squash?? Shook) you get something out of them.

6. Go to class- a lot of people don’t, but I have always religiously attended and it’s done me the world of good. I’m not the sort of person that’s very good at teaching myself the course the night before exams.
7. Dealing with stress-

It’s freshers week, and you don’t want to think about it, but unfortunately the hard part isn’t over- now you’re at uni there’s the small matter of actually getting your degree. That’s going to involve exams (now just 11 weeks away!) and essays, and sometimes a variety of the two at the same time. It’s tough for anyone, but with diabetes there’s an added pressure at a time when you really don’t need it. The following is bad health advice, but ironically enough it came to me via my favourite doctor- sometimes, diabetes has to take a back seat. I went to a hospital appointment during my Highers (in Scotland, the exams that decide whether you get into uni or not), with a slightly raised HBA1c. Dr Green sat down and asked what was going on, I told him I was in the middle of my highers, and he said ‘Okay, let’s not talk about diabetes today’ and started asking questions about what subjects I had taken, what I wanted to do after school etc. He asked if I snacked while I studied, and suggested maybe that was the problem I was having. At the end of the day, exams are temporary, you’ll be out of routine and your glucose levels (if they’re anything like mine) can be severely affected by stress. That could mean that no one day looks like the one before, and it can be hard to manage. Give yourself a break- keep an eye on things and do your best, but don’t beat yourself up about it. Also- write your essays early and give yourself time to proof read. That’s just good advice.

Ultimately, uni is a combination of great times and very stressful times. It’s full of opportunities beyond just what you’re going to learn, and if you’re about to start, you should be really excited about the years ahead of you. Diabetes doesn’t have to hold you back, I’ve still had a lot of fun and kept up good attendance despite my condition, I finished with a first in law, a lot of great friends and experiences to look back on- so don’t even think about letting diabetes slow you down.

Now go have fun, but not too much fun.

Thanks for tuning in!

Justine

Treat Me Nice: Part Three

If you read my last post (Treat Me Nice: Part Two) you’ll know that one of my major concerns around moving onto the pump was how it may single me out and make me feel different, including by restricting my outfit choices. That may sound incredibly vain to some- but it’s a feeling that I have discovered is actually surprisingly common, particularly among young women. I’d say it’s only natural- many of us have a particular sense of style that we like to adhere to, after all. I’d certainly say it’s an important part of my identity- I love shopping, finding something unique and putting an outfit together. I LOVE when people compliment my sense of style, because it’s something I’m so invested in. Some people wear their pump loud and proud- and more power to them, but I prefer to keep my pump concealed in such a way that it doesn’t distract attention from whatever else I’m wearing. I know I’m not alone in that feeling, and what follows may come across as vain or patronising (if that’s the case, I apologise) but I said when I started this that I was going to try and talk about things I wish I knew when I was younger- in this case, before I was resistant to the pump, I wish I had known that I could maintain my sense of identity and dress exactly how I wanted, almost completely without compromise. Maybe you have a daughter, or son, or a sibling, or a friend who feels that diabetes cramps their style- and I wanted to explain how I have avoided that particular concern.

It doesn’t take much at all- sometimes you just have to get creative with where you put your pump. Clip it to your knickers, slip it under your bra, pop it in your pocket. In all of these pictures I’m wearing my pump, and at most it just appears like a phone in my pocket. Other times, it’s completely invisible.

 

(These pictures make me look like the biggest poser in the world- rest assured, most of them were taken either by my Mum for my boyfriend, or by my boyfriend for my Mum- I think they serve to illustrate my point though)

For years I thought that I would never be able to wear backless dresses. It was a style I loved but I thought would be too difficult to negotiate in such a way as to conceal my insulin pump. But, reader, let me tell you: nothing was going to come between me and this backless, red, lace gown on for half price at John Lewis in just my size.

Can you see it? Nope- I wore a backless bra, stuck to my body with duct tape, and slid the pump underneath. Of course, it wasn’t very comfortable, but it did the trick! When I wore it again later, someone actually remarked on how they couldn’t believe I was wearing an insulin pump.

But I’ll let you in on one naughty little secret- when I went to my grad ball, I just took the pump off for a few hours and went back on my pen. I know, I know- I wouldn’t recommend it from a health point of view. But I worked bloody hard for four years to get to go to that ball and I was going to wear exactly what I wanted and feel precisely as special as I deserved. I put it straight back on when I got home, and the whole night went by without incident (a lot of dancing meant my blood sugars were surprisingly stable despite the meal!). I never have a day where I don’t think about my diabetes, I test incessantly and I worry constantly, but sometimes it’s okay to let diabetes work for you, just for a little while, rather than the other way round.

So that’s really the end of the story- from pen to pump and beyond, I’ve given as much detail as I think is palatable about the different treatments I’ve encountered and how they’ve changed my life and my outlook on diabetes, and also a bit about how I make diabetes work for me and my own sense of identity. At risk of being controversial though, there has been one development that was a bit of a non-starter: constant glucose monitoring. Let me start by saying that this is an idea I LOVE. I probably test an average of ten times a day, easily, so it would be a dream come true for me to be able to just scan my arm and avoid the hassle of the fingerprick. Beyond that, it would be so helpful for those pesky night-time readings to know in which direction my blood sugars are travelling. I was given the Libre on a trial basis in January, but sadly we just didn’t gel. They said I should test my blood sugars manually to ensure that the readings from the Libre were accurate, because some people find there are discrepancies- often down to a slight time delay. I did the back-up testing and I don’t think I ever found that the two readings were the same, and often they were miles apart. I thought it was just the time delay, but often the pattern between readings on the Libre and my own monitor never matched up. I couldn’t tolerate the inaccuracy, it would say I was having a hypo when I really wasn’t, for example, which can obviously have a huge impact on my decision to treat. Now that I’ve joined the online community, I see that constant glucose monitoring is all the rage, and some people seem to totally love it. I’m interested in how it went so badly wrong for me.

So there you have it- my diabetic life and all my treatment experiences. Do you, or a loved one, find that diabetes has impacted your self-image? Do you feel restricted by the requirements of your treatment? Are you a CGM convert who can tell me a thing or two, or have you had an experience similar to mine? As always, direct your comments my way!

Thanks for tuning in!

Justine

Treat Me Nice: Part Two

I don’t remember exactly when discussions about moving onto an insulin pump really started, but I remember that I was initially resistant to the idea. Because here’s the thing: when you’re 12, 13, 14 years old, the prospect of better control is somewhat outweighed by the fear of being different. Because diabetes is, for all intents and purposes, an invisible illness: you wouldn’t look at a person with diabetes walking down the street and know right away that they have the condition, because they look just like everybody else. Then suddenly you smack a machine on that person, and suddenly they’re not the same as everybody else.

After discussions with doctors, nurses and my Mum and Dad though, I was persuaded of the merits of the move. I don’t think I really took that much persuading- when the thought of no more injections was presented to me, it was an offer too good to be true. I had never really believed that that would be a possibility for me.

I didn’t get my pump the way most people got theirs. At the time (I was about 13 I think), they were still reasonably new and there was no system in place for distributing them. Because my diabetes was well managed, I was offered the opportunity to be part of a clinical study, testing the benefits of the pump directly against the pen. The deal went like this: the study lasted for a year, the sample was split down the middle, and one group would spend the first six months on the pump, then move back to the pen, and the other group would do the opposite. Every participant had to undergo constant glucose monitoring (still in primitive form) for a set period of time under each respective regime. But here was the clincher- at the end, no matter which group you were in, if you wanted a pump, it was yours. I had the pure good fortune of falling into the group who would stay on the pen for the first six months and then move to the pump- of course, within weeks I knew I would be keeping it. Because the little machine I was so worried would single me out, had changed my outlook on life with type one completely, and brought me so much closer to the life my friends, my family, my peers took for granted.

I’m not 100% clear on what the outcome of the study was, we were led to believe that it was likely to be the case that those on the pump had a higher average glucose level, but with less ups and downs inbetween- I sense that was probably correct. It can’t have done too badly, because the pump is now widely available in Scotland.

In case anyone doesn’t know, I’ll explain how the insulin pump works (experienced users, please skip over). As explained in yesterday’s blog, before the pump I was living on a regime of two kinds of insulin, one kind I had once a day- my basal insulin, which is slow acting and ensures that you have insulin active in your body at all times, the other kind I had multiple times a day- my bolus insulin, a fast acting insulin to combat the carbs of every meal. With the insulin pump, there is no slow acting insulin, but you still have a ‘basal rate’, a small amount of insulin the pump is giving you all the time, which can be altered so that you are receiving different amounts of background insulin at different times of the day. With the pump, you can even set a ‘temporary basal’, a different pattern you can put into operation if you’re doing activities outwith your normal day (for example: I may set a temporary basal if I’m going to do sports, because that is outwith my usual day). On top of that- you still bolus for food- but instead of you calculating your insulin, the pump can do that for you. You input your insulin sensitivity at different times of day, your carbohydrate to insulin unit ratios, and your blood glucose targets for different times of the day, and the ‘bolus wizard’ is all set to calculate the bolus you need for any meal. Everything can be altered with the touch of a button- if you think your carb ratios are a little off, you can change it; if you think you’re receiving too much basal at a certain time of day, you can change that too. Additionally, it can work with very small measurements. Instead of having seven units, for example, your pump might conclude you need 7.2 or 7.4- these are all components that are meant to give you better control. On the whole, I suppose they probably do, although I appreciate that mine had been pretty stable to start with.

But what really made me feel that I was in control, was that for the first time since I was eight I didn’t have to inflict pain on myself to sort out my blood sugars. If I was running a little high, I could have one unit on the pump, I didn’t have to bring out my pen and have another injection for a unit that may or may not have an impact, and it’s those little differences that mean I can get my blood sugars down quicker. With that knowledge, I was able to eat things that I maybe would have said no to before, because with the pump I had much better control over the outcome. Additionally, with the insulin pump, you only need to change your set once every 3-or-so days- that means only one injection (granted, a bigger one) every three days, rather than upwards of five in a day. It’s a different life from the one I lived before.

The study itself was relatively pain-free, barring the increase in appointments for things like CGM insertion etc. It was great to feel that, although I was being directly benefitted in that I got to keep my pump, hopefully my small effort, and the significant effort of the doctors and nurses involved, would mean that the benefits of the pump could be proven and others would get to experience the benefits of it.

Tomorrow- I’ll discuss pump life, including the many ways I have found to accommodate the pump to go with any outfit (combating my original fear of the pump!), and developments since, including my brief dalliance with the Libre.

Thanks for tuning in!

Justine

Treat Me Nice: Part One

I probably should have started with this one, but better late than never. When a friend suggested to me that an interesting topic to cover would be contrasting the pen and pump, I realised I’ve been sketchy on the details of the different regimes I’ve lived with over the years. And if I want to offer my perspective on pens, pumps or anything else, a little context would probably be useful. So here we go, for the first time in my life I’m going to lay out the whole ride, and how my perspective on my condition has changed as a result.

It’s 2004, I’m eight years old and I’m so, so thirsty. Not like, a little bit more thirsty than usual- I mean I physically cannot take the glass of water away from my mouth without needing another gulp. I’m thirsty as I drink. They say there are four ‘Ts’ of type one diagnosis- Thirsty, Toilet, Tired, Thin. I can’t remember the last two really coming into play. But by god, I was thirsty, and of course the need to constantly run to the bathroom came with that. My Mum looks in my mouth and sees that its bone dry, and that’s when we go to the doctors. I remember a little pinprick at the GPs, I remember our trip to the GP becoming a trip to the hospital.

My Mum told me, years later, that the doctor (Dr Green, he was my doctor for years after that and he was the best I’ve ever met) told her it would sound ridiculous to her to say that I had a serious condition, because I looked so healthy. But that wasn’t true for most kids getting their diabetes diagnosis. My blood sugars weren’t that high either- then he gave me a little something to eat, and watched as the numbers climbed. Of course, that’s not what I remember: I remember him sitting me down and asking me what I liked to do when I wasn’t at school. I rattled off my many hobbies (I was one of ‘those kids’)- swimming, Brownies, my Girl’s Club (where we put on little shows twice a year) etc. ‘Well, the bad news..’ he said, ‘…is that you’ll still have to do all of those things’. He told me I would still be able to do everything I wanted to, and he was right. Better still, unbeknown to me, the rumour at my primary school was that I was off school because I was going to be on the telly.

But although I could still do all the things I wanted to do, my life and that of my family was undeniably different. My Mum always says that at first, they wanted to know everything all at once- we were going to face this thing head on- but they didn’t seem to get the information they wanted from the hospital. The hospital give you only the information you need to get through every day, to start with, which seems sensible to me. I remember the nurse coming to my house and showing us how to do injections, and that was probably the major disadvantage of the condition for my eight-year-old self, all the injections, and limitations on what I could eat and when. Maybe that was because my first treatment was a pen, the name of which now escapes me, which contained both fast and slow acting insulin (the ratio was 60:40, if my memory serves), which I had to use twenty minutes before eating a meal. That sounds straight forward enough- right? But what do you do when you go to a restaurant? Or your friend’s ninth birthday party? It’s not exactly a normal request to want to know exactly when your food will be ready.

When I came off that pen, I couldn’t say for sure- but the next regime was a better one, with no 20 minute waits. I had a separate pen for fast and slow acting insulin- one to have before meals, one to have at 9.15 every night, to tick over until the next night. This was more flexible. But it was still at least five injections a day (I was in the habit of eating breakfast, lunch, tea and supper like clockwork at that point in time) if you assume that I also had snacks etc. then it could be more. I remember one Christmas (the day where all snacking is allowed, whether your pancreas works or not) having as many as seven injections in the one day. So it was flexible, but not that flexible- you had to decide whether eating X,Y, or Z was worth the hassle of the injection.

That regime worked pretty well overall, but I couldn’t complete this chapter without saying that my good health was, and continues to be, a tribute to the hard work of my parents. Every day, my Mum sent me to school with my lunch box, with a hand-written note in it, with the date on it and headings, under which I was to fill in the details of any fingerpricks I did, the insulin I had etc. and when I got home these went in a notepad, for monitoring purposes. My Dad stayed up at night and checked my blood sugars so I could sleep, because when I was young hypos didn’t wake me. He fed me Mars bars and pancakes if I needed them, and usually I didn’t even remember in the morning that he had ever woken me at all. I have since learned that control in those first few years after diagnosis is essential to avoiding complications later in life- I didn’t always thank my Mum and Dad for keeping things running smoothly (and they didn’t always run completely smoothly, there were blips along the way, because managing diabetes in a growing child is difficult), because it was usually the harder option, but I’m more grateful to them now than I could ever express.

They were equally as determined that, although life was a little different for me, it was never going to be worse. One fiasco sticks in my mind: there was a rule at my primary school that my diabetic supplies had to be stored with the nurse, and I had to be supervised by the nurse as I did my injections. When one nurse retired, a new one replaced her, and she took her lunch break when all of the kids my age had their lunch break- so I had to go and do my injections before our designated lunchtime, taking me out of class, and I had to eat my lunch with kids younger than me by a few years. I didn’t see my friends, never mind eat lunch with them. I didn’t tell my Mum or Dad, because I knew it wouldn’t go down well. Reader- this may come as a shock, but when I eventually told my Mum, she was not impressed (putting it mildly). She called the school, and she told them that this was to be fixed, even if it meant she had to come to my school every lunchtime and supervise me doing my injections personally, I would be eating lunch with my friends. The school were unaware of the existing arrangement, and I don’t remember how but it was put to rights immediately. I don’t know why this one stays with me, but it illustrates the sort of inconveniences that we came up against over time- there were others, both in school and out. I say ‘inconveniences’ because they really weren’t anything more than that.

That’s a brief account of my pre-pump life, in terms of diabetes. Of course, I had a lot of other character-shaping events that had absolutely nothing to do with diabetes, and those were far more interesting and important. I took up the piano, I went to secondary school. The pen wasn’t a bad regime, it had become more flexible, even if it involved hassle and a bit of pain. Then, at one hospital appointment, Dr Green asked if we had heard of an ‘insulin pump’- a relatively new development that he thought we would be well suited to, on account of our good handle on the condition. But that’s tomorrow’s story.

Do you have any childhood experiences with type one that stick out in your memory? Has your treatment changed as you’ve gotten older? Get in touch/drop me a tweet!

Thanks for tuning in!

Justine