Gemma & The Diabetes

Hi all, 

I’ve decided to relocate my blog to Wix: 

www.gemmabetes.com

This is so that I have more creative freedom over the blog than I do on tumblr, and it’s easier for my non-tumblr-using readers 

It boggles me to think we are nearing 2018 and yet there is still such a stigma around mental illness. How so many people still believe that worrying and having anxiety are interchangeable terms. It’s something that baffles me because I have lived with and suffered from anxiety for several years, to me it is not hard to distinguish from run-of-the-mill worries, it’s not hard to see how severely it can impede someone’s everyday life, yet to many it’s something that we should just “get over”. Often I’ve found even those who claim to understand (but maybe don’t live with it) get to a point where they feel you should have “gotten over it already”. Absolutely mind-boggling.

In fact, I had been thinking about writing this post for a while, but there was a conversation - or more accurately an argument - this morning that pushed me to write an enlightening post about living with anxiety and diabetes. In short, someone asked me “what the fuck happened to you? I thought you were all good … it’s so off-putting” because I let rip at this terribly misguided person for giving me unsolicited and unwarranted “advice” about my anxiety, after I had asked not to discuss it. My anger is not off-putting, wrong or unwarranted when someone sticks their abnormally large nose in where it does not belong. I am not in favour of anyone who belittles me or insinuates that having anxiety makes me less of a person, someone “troubled”.

So, continuing with my theme of diabetic emotional-well-being, I have decided to dedicate a post to living with diabetes and anxiety, and how it has shaped my life and my mental health. The focus will be more on anxiety for this post and it is of course, all my own experiences, but I hope that it will help to illuminate what it can be like to live with anxiety and diabetes. I am hoping that for those of you in the dark about anxiety or mental health in general, may see that having anxiety does not make someone weaker, or troubled, it requires a tremendous amount of strength to live with and cope with.

To start, I’d like to bust one giant myth roaming around out there: ANXIETY IS NOT WORRYING. Anxiety is adrenaline running through the body when you don’t need it, generally speaking adrenaline kicks in for survival, it kicks in when you’re in a scary situation. But with anxiety, adrenaline is that kid from your school who turned up to your party and you definitely didn’t invite them - that kid starts smashing up your house and you’re running around after him to try and clean up and trying hard to figure out who the fuck invited this nightmare into your home, your safe space. Anxiety for me tends to present itself in nausea and dizziness, which meant that when it first started to get bad, I was stressing out because I felt so ill and I had no idea why, I was scared I’d be sick and this started up the never-ending cycle. Because the thing is, no one invited nightmare-child into your home, he turned up out of the blue and you started to stress yourself out so much trying to figure out why, that meanwhile anxiety is running rampage and building, getting worse because the stress is fuelling it. Anxiety does not need a reason to start - it can certainly be triggered - but why it’s there is not important, what IS important is that the more you give it thought and attention, the worse it gets and this is the hardest part to control.

How does this relate to diabetes then? Well it intertwines in several ways, the first way is that diabetes itself can be a trigger - if your sugars are running constantly low before you need to sleep, or if you’ve had a good day and out of nowhere your sugars have shot up to the heavens, it causes an annoying amount of stress. This stress plus the effects of the hypo/hyper itself on your body can trigger anxiety. For me, this doesn’t tend to happen too much - my diabetes is affected by my anxiety in reverse. By this I mean that when I have an anxiety attack, my diabetes is a worry for me as I feel so nauseous I can’t physically bring myself to eat, but (thankfully) often I find that anxiety and stress sends my sugars sky rocketing so I don’t actually need to eat. Of course, if one day this wasn’t the case and I needed to eat, this would be a huge struggle because although anxiety is sourced mentally, it very much affects you physically. So in essence, diabetes and anxiety create between themselves another layer of anxiety that affects both conditions and can be very difficult to manage.

I remember the first time I noticed an anxiety attack, I was about 17 and I was at a wedding - my mum told me it was anxiety, I didn’t really know what that meant and I had to leave to go to my room and sleep it off because I felt so sick. I remember meeting my friend when I was 20 and having to come home because I felt too sick, I’d been having anxiety and I cried my eyes out when I got home and realised was it was. I once called in sick to work on my second shift when I was in uni as I had such bad anxiety that day, I stayed in bed the whole day. Most recently, I had a bad anxiety attack the morning of Friday 10th November. I knew it was anxiety, but for the first time in years I was having an attack that I couldn’t control, I got into work and I was crying in the bathroom on the phone to my mum, I had to leave and sleep all day and cancel plans I had been so excited for that evening. That was the first time in a couple years that anxiety has inhibited my life significantly and in the last week or so it has taken a toll on me. I have woken up nauseous most days and have had to try to solider through the rest of the day. The attack was completely random and it hit me out of nowhere, but I suspect worrying about my sugars dropping overnight and a lack of sleep had a hand to play, it has been difficult but I am coping.

I haven’t shown this to anyone, but I took this photo after a bad attack to remind myself how awful anxiety feels and to remind myself that it ended #StillFabTho

It hasn’t been all bad though, earlier in the summer I woke up two or three mornings in a row with anxiety attacks, which I hadn’t had in a long time. I forced myself into work and told myself if I was still ill I would come back home again, and each time I was perfectly fine upon arriving at work. This was such a big celebratory moment for me as I had gone from cancelling plans and work shifts to accommodate my anxiety, to beating it without anyone’s help but my own mental determination. I have had such a good grip on it the last year or so and it is an amazing feeling, because anxiety feels like you are so far out of control that you’ll never live a normal life. I have had a wobble but I know that I will take my time and I will regain control and feel myself again soon.

I was lucky that my mum taught me how to identify anxiety from illness and has taught me some really great tips so that years on I am able to control my anxiety myself. I’m very lucky that I had that support system in place when my anxiety started to kick in because honestly it’s terrifying. One of the most commonly listed symptoms of anxiety is a feeling that you’re about to die, and it can feel like that, for me it feels more like I’ll never be okay again - a bit like an anxiety dementor for those Harry Potter fans. My point is that, it can be disabling and should not be brushed aside or passed off as “worrying”, the worrying kicks in after you’re already having an attack usually.

Anxiety is very real and it affects a LOT of people, and a lot of diabetics. The two conditions can be disabling, but the most important thing to have is a support system and to discover your own techniques. I had to learn to control my anxiety, and learn how to take care of my diabetes at the same time, by myself so that I could lead an independent, healthy and happy life. And it’s not easy, the reason anxiety attacks come with tears are because they feel so awful and lonely, but this does not make me weak. Mental health issues are arguably more difficult to cope with than physical conditions because we are not taught how to be mentally strong and healthy, and when we aren’t, it is brushed off and disregarded. But this NEEDS to change because it only hinders those struggling with mental health conditions even more so, and in fact it is my own personal belief that it takes someone strong as hell to fight through mental health conditions, the weak ones are those ignorant enough to disregard us simply because they haven’t experienced it.

Finally, to the person who called me “off-putting” this morning: Sorry not sorry pal, I’m fabulous, anxiety and diabetes included, please move along if you are too blind to see this.

I’ve received some feedback from my non-diabetic friends. A lot of it centres around how fascinating they’re finding my blog because there’s a lot about diabetes they’re unaware of, they didn’t realise it extends beyond a finger prick and a needle. I find this funny because I know so much about the personal experience that is being a diabetic, yet I don’t classify myself as “a diabetic”. I’m normal… in some sense of that word. I just inject myself. I haven’t posted in a while and my excuse was writer’s block, but between you and me that’s a lie.

I can’t write or talk about my diabetes because of the guilt and I can’t talk about it because it makes it real. Sounds ridiculous right? In two weeks it’ll be ten years to the day I was diagnosed: a skinny, twelve year old with red glasses and no idea of the effects to come. It’s been ten years and I’m scared to discuss it because it makes it real. I am aware I HAVE diabetes, but it is not at the forefront of my mind and I don’t want it to be. It’s because for years I have prided myself on my ability to remain “normal”, at least in terms of how the world views me. However, I am not normal. I don’t quite know what “normal” is, but I am not normal. I didn’t watch the same TV shows as a lot of kids I knew, or listen to the same music, I didn’t think secondary school was the “best time of my life”, I hate musicals but The Sound of Music is one of my all-time favourite films. I am a hopeless romantic in the twenty-first century. I over-share, I appear confident, I am confident, yet I worry what others think of me. I hate being diabetic and I write a blog about my diabetes. I am diabetic. I am not “a diabetic”. You may relate to a lot of these things and you may think that none of this makes me abnormal and you may be right, but that’s not how I feel. Maybe it has something to do with the fact that people jump and gasp “I thought you were gonna stab me” when I inject. Maybe it’s because I was out eating with my friend when a woman interrupted our meal to tell me I had “something” on my arm (my Libre). Maybe it’s because whenever I’m talking to someone new and diabetes comes up, suddenly I am the same as the aunt who has been a type two diabetic for three months. Diabetes and my health has defined my life for ten years, I have anxiety and ninety-nine percent of the time it is health related - hypochondriac anyone? My point is that I cannot celebrate those small things that make me unique (read abnormal) such as being a hopeless romantic, because I am reminded at every turn that I am a diabetic. This is my identifier.

I appreciate the love and support from my family, my friends and my readers, and as much as I want to educate you all about diabetes and my twenty-four/seven experience of it, this blog is about me and for me. I started this blog because I need to come to terms with my diabetes. I want to do it in a way that helps others to understand me, not necessarily every other diabetic, because I cannot speak for anyone else. We are all unique, having diabetes is merely a fragile thread that connects us together and this blog is simply an insight into the diabetic aspect of my life. I am inconsistent and I am imperfect but I try and I am trying to work through this as much as you are.

To return to this thing about the “guilt”, when I was twelve and my mum tested my sugar and I was HI, my stomach dropped to my feet. I did not want to be diabetic, my whole life would change and I wasn’t ready for that, I’d only just started year eight in secondary school and I hadn’t even discovered eyeliner yet, let alone myself. I became “a diabetic” at a defining point in my life, a point right before my first major kick in the teeth. Everything in my life has been followed by this shadow that is diabetes, I can’t be ill or panicky without worrying about my health, I can’t travel with a clear mind, or walk around on a hot day, or even go to the bathroom without checking my sugar to see if diabetes is being an asshole today. It literally affects EVERYTHING, but I’d rather pretend that it doesn’t worry me. I’d rather pretend I’m not concerned about wearing short sleeves in case my Libre’s on show, or pretend I don’t fear leg amputation or kidney dialysis. But I do, I worry about these things everyday, sometimes without knowing. So when I go to the doctor I don’t need a lecture on what I should be doing, “by the book” that is. Because I bloody know. But tell me, did any of these studies consider throwing puberty into the mix? Or anxiety? Or any other type of emotion? Did they consider what to do when you’re standing at an Ed Sheeran concert and you have to stop to test your sugar every half hour because you’re jumping? Do the experts truly understand this bit? They make considerations for those rare occasions that you can’t weigh out every morsel you eat and do fifty calculations to figure out your insulin that will then send you hypo to which you then correct and go high and cannot for the life of Jesus figure out what’s gone wrong. Actually they don’t consider that, because it appears to me that whoever is writing about and studying diabetes and its management does not consider the fact that I AM NOT A DIABETIC. I am a human, normal or not, living with diabetes and quite frankly I’ll do what I can to keep myself healthy, but I will not devote my entire life to keeping myself alive when I have witnessed first-hand how unpredictable life really is.

Just to clarify, I do not believe that every doctor, nurse or diabetic expert is cold and unaware of any of these issues in my head. But I am addressing those who treat me as though I am no more than a diabetic, with nothing else to do than to worry about my diabetes and who sees diabetes in a very clear and clinical frame of mind. I have a life to live, like yours, not a special-edition “diabetes life”, thanks.

So what am I angry about today? That I am seen as “a diabetic”, something I have felt guilty for resenting these last ten years, but something that it’s taken me this long to realise - is actually a load of shite (excuse my french). I am not a diabetic, I am Gemma Dowling, hopeless romantic, Sound of Music-watching, anxiety-having, imperfect human who happens to have diabetes and keeps it under as much control as she can bear. Please do not give me grief for not tending to my health twenty-four-seven. Do we do that for university students who get blind drunk everyday? Do we do that for smokers?

I do try to walk on the bright side of life, and whilst I’m aware this has been a rather negative-filled post, I won’t apologise because it is the reality of living with diabetes. Coping with being dehumanised (to an extent) is a side-effect of diabetes. All I want to do is live my best life, and not be reminded of the shadow because I have it under control as best as my happiness allows. Please let me.

Hello everyone! I‘m back for a little catch up. Been a while since I’ve posted and that’s been due to two things:

I’ve had no time to just sit and write for weeks now

I’ve also had a bit of writer’s block

But I’ve decided to bundle a few smaller topics into one and update you all with how I’ve coped this last month or so.

One of the things I wanted to discuss was the struggle when sugar’s run high. I have previously posted about hypos, but just as horrendous as it is to feel as though your cells are vibrating, it is also horrible to experience being high - known as being ‘hyper’ and a common misconception is that being hyper is like being hyper-active and experiencing a sugar rush where you’re practically up the walls, but that couldn’t be further from the truth.

In saying that, it is probably far easier for a non-diabetic to imagine the symptoms of a high blood sugar than a low blood sugar, and that’s because you’ll be familiar with some of the symptoms (although probably not all at the same time). Here’s a non-exhaustive list of some of the symptoms experienced when sugar’s run high:

A mouth like the Sahara (“Because waiting for [a good reading] is like waiting for rain in this draught” - Hilary Duff spoke to me on a diabetic/spiritual level with that one)

Needing to pee every two minutes (honestly you get a right workout climbing the stairs to the loo that often)

Thirst (drink, pee, drink, pee…)

Sometimes I’m hungry (this is the most annoying type of hunger as you probably shouldn’t eat)

Exhaustion/Fatigue (making the stair-climbing even more difficult)

If I had to compare symptoms, I would probably say that being hypo (low) feels worse, however, being high has a much more significant impact mentally. Seeing a high blood sugar is extremely disheartening and it’s also worrying. As a diabetic you’re well versed in the problems you can face should your sugars get out of control, including dialysis, amputation and blindness. Every single time I see a high blood sugar pop up on that little machine, this fear shoots through me, because things like dialysis are a very real threat if your sugar is constantly out of control. It is very difficult when anyone (particularly a non-diabetic or a know-it-all doc) tells you that “all you need to do is…”, because it is far more difficult than simply changing a part of your diet.

As the weather has become increasingly warmer, my control has had to change. I’ve reduced my Levimir (this is my background insulin) from 10 units at night and 4 units in the morning to 9 units at night only. However, I have now noticed that my sugar is much more up and down than it was. After I eat my sugar spikes up to the high-teens and then drops down to either in-range or hypo, so my ratios are correct, but I definitely need another dose of Levimir throughout the day to prevent my sugars from spiking up so high initially. For this I’ll probably adjust to 9u at night and 3u in the morning. BUT in better news, I have figured out that I need exactly 2u of NovoRapid (fast acting insulin) for a magnum #SummerSorted!

I’ve not had a great experience with consultants or most of the medical staff I’ve met since being diabetic, not to say I haven’t met some amazing doctors or nurses, but overall the experience has been largely negative. So I’ve grown accustomed to attempting to understand my diabetes by myself and not relying too much on my consultants. I have found that DAfNE has been a blessing in this case though, as at least I have something to refer to when I’m not sure about things.

But in a more positive light, as a wonderful birthday present, I got to see Ed Sheeran perform at the O2 a couple weeks ago! Myself and my best friend Abbey went and it was absolutely wonderful. It was the first concert I went to that was standing (and my legs were broken for the next three days) so naturally I had a few diabetic worries: What if I went hypo? Will they let me in with an orange juice? (particularly so soon after the Manchester attacks, the security was much higher) What if my sugar was high and I needed the toilet? (we had great places so that would’ve been pretty annoying). So before we set off I packed an orange juice (henceforth referred to as an OJ) and some glucotabs just in case. The first set of security guys didn’t seem to see my OJ, so that was the first obstacle out of the way, but then there was more security before we went in and it was more thorough. Fuuuuuuuuck sake. I just said to the woman “I have a carton of OJ in there but I’m diabetic so I need it, is that okay?” and she just said “I didn’t see anything” and moved me on (thank you security lady!) Before we’d even left I had a hypo, which I overcorrected, and so I shot up to about 21 as we were eating our nandos, but I didn’t correct it. Thankfully I didn’t, because towards the end of the opening act’s performance, I dropped to around 4 and that arrow of doom was telling me I was going straight down, I thought “please no not now”. I downed the OJ and on later testing I’d dropped more, so I stuffed down some glucotabs (thank the lord I got in with both) and got my sugar to about 6. Following a lot of jumping and screaming, my sugars steadied around 5/6 and I had the occasional glucotab just to be sure. Thankfully this kept me going but I reckon all would’ve been fine had I not had the earlier hypo. But the experience has given me much more confidence in handling my diabetes whilst standing at a concert - hopefully I’ll eventually get to festival level, as that is another goal of mine.

Ed!

It would really be lovely to feel like a 22 year old who can go to a concert or a festival or travel halfway across the world and not concern herself with the stress of diabetes and what will happen if I’m hypo or if I run out of hypo treatments. Or even to worry about how big of a bag I’ll have to bring to carry around so many hypo treatments with me. I see people my age travelling across the world and they’re out exploring all day, and go into the night without having to think about things like is their insulin cool enough? Do they have enough testing strips? Have they adjusted their insulin correctly to climb a massive hill and walk around all day because that was a last minute decision? I would love to be in a position where I had my diabetes well enough controlled that something like that wouldn’t stress me out, but I can’t at this stage. As I’ve said since starting this blog, I want to be honest, open and explore the emotional impact that living with diabetes has, and unfortunately these worries come with the package. It can feel extremely unfair at times but it’s just the way my life is and complaining about how unfair it is won’t help me live with it and won’t help me achieve my goals.

So apologies for my very delayed blog post, but in some ways it’s a good thing - my life is in a good place right now and it’s certainly kept me busy, however I will continue to post as often as I can. Again, if you have any comments or suggestions (especially suggestions - please help me with my writers block!) please let me know!

Love,

Hello everyone! I’ve had a hectic two weeks filled with birthdays, communions and lots of work, so now I’m back to talk to you about a side of diabetes I feel is rarely - if ever - discussed.  Diabetes affects my relationships and body image, and I’m sure it affects plenty of other diabetics too. I’m sure the first thing that comes to mind when someone thinks of diabetes is “sugar” or “insulin”, then secondly most people think about injections and blood testing. As I’ve previously written about, the mental impact of living as a diabetic isn’t often acknowledged and this particular area is something I don’t think I’ve even discussed with another diabetic. So here we go, straight into the recesses of my brain.

To explain the impact that diabetes has on my relationships, I’ll divide them into platonic, professional and romantic. It affects each type in different ways, the main way it affects my friendships is usually by the lack of awareness non-diabetics can have about diabetes. Of course I love all my friends to bits, whether they’re a diabetic expert or they know sweet-F-all, but as diabetes is such a huge part of my life, it can be difficult when my friends don’t understand how awful a hypo feels or how stressful a high reading is. It’s also difficult when I feel as though I’m being a nuisance for having to stop to check my sugar or for needing food at awkward times. This way of thinking is something I need to work on myself, I know none of my friends would ever hold it against me, but it does make me feel like I’m not quite normal. Ninety-nine percent of the time, having most of my friends being non-diabetic is a blessing as I don’t feel like “a diabetic” and I don’t have to talk about it all the time, I can just get on with being me. But those times when I have a bad hypo when I’m out with my friends and they may not realise how serious it is because they’re used to me dealing with diabetes quietly by myself, it feels stressful. When you have someone who knows that you need to sit down for a half hour and need a calming conversation to prevent any panicking in those kinds of situations, it makes all the difference. But I think that understanding these needs comes from being diabetic yourself, or being a parents or spouse of a diabetic, where you’re forced to learn these caring techniques, otherwise it would never really cross your mind. Particularly as I do deal with my diabetes independently, it can be easy to forget that I need help sometimes.

My best friend: This girl knows just how to care for her favourite diabetic and I’m so lucky to have her!

In terms of professional relationships, the main struggle is again understanding, but in this sense it’s more about not understanding how diabetes affects my ability to work and to concentrate at times. This was particularly a struggle in retail, with varied shifts, eating patterns and constantly moving around. Diabetes is often simplified to “need sugar or need insulin” but the effects and dangers of a hypo, or a hyper are misunderstood and sometimes even trivialised, “Oh your sugars low? So you need to eat sweet things? I’m so jealous!”. Of course with professional relationships you can’t exactly shout at your superiors or your colleagues, which can be a struggle when diabetes causes extreme ~frustration~. In some of these scenarios, you have to take ignorance on the chin and get on with it, which is a struggle in itself.

Again, with romantic relationships, there is a struggle with understanding at times, but I have been lucky in that I’ve been with people who have cared enough to try to understand diabetes and learn about it. However, the main struggle in these relationships is more about learning to deal with my diabetic-related mood swings and learning how to decipher them. It’s also about not taking things personally (honestly, as a diabetic, Hangry takes on a whoooole new meaning). I have previously heard things like “there’s no need to take it out on me” when I’m hypo, and this is where only my mother can tell that I’m hypo-angry. Then the explanation that I’m sorry but anger is a side effect of hypo’s is waved off as an excuse and that person is annoyed for having received the brunt of my anger. I understand why they would be annoyed or angry, but unfortunately, at times it is something that just happens - your sugar drops and you snap at anyone who so much as blinks at you the wrong way. This is something that can’t be resolved and the person I am with just has to take it as part of me - not one of the better sides I’ll admit, but you take the good with the bad, and this particular bad part is at the fault of stupid diabetes.

On top of the emotional toll of diabetes in relationships, it also adds to an annoying layer of self-consciousness. Nine times out of ten I am a very confident person, and I’m mostly happy with my appearance, and this is how I’d like to stay. But I do have some body image issues that are diabetes related. For one, my thighs and stomach are bruised and sometimes have lumps from injecting. My fingers have little bumps and holes from testing. I get very tired and it shows under my eyes. Since starting on the libre, I seem to be reacting to the adhesive and I get angry red marks which become bruises and last for 1-2 weeks.

Lovely angry bruise after taking out my Libre

These things are all small but they add up and I feel quite conscious about them, particularly my arms after wearing a libre. On top of the physical effects of diabetes, there is also the fact that I wear the libre, which prompts questions and strange looks, plus it’s not exactly that appealing to the eye. I don’t care about injecting in public, but it is annoying to get weird looks from strangers, you just wanna go up to them and ask if they’d like some (probably won’t get a high but a hypo is certain). Trying to look cute for a date when you’re conscious of the weird thing on your arm and the ugly bruise on the other is quite annoying, and it makes me want to cover it up (cue ten outfit changes). It is something I’m working on - eventually I’ll get to the point where I could not care less but for now, I would rather if diabetes didn’t have such a physical impact on my appearance, one that I’m sure is more apparent to me than anyone else.

I have had people tell me that I don’t deserve to have body image issues because they feel as though there’s nothing wrong with me, but if anything comes out of this post, it’s that body image issues are relative and everyone has them. But specifically in terms of diabetes, these “minor” problems are constant reminders of the fact that we are stuck with diabetes. They’re also just not nice to have, I don’t feel I look nice when I’m covered in bruises and blood. There is nothing to be ashamed of by these bruises of course, and eventually I’ll get to that stage when I will embrace them and accept them, so hopefully this post is a step in the right direction. In terms of my relationships, I will always have these issues but ultimately I know I am cared for and I’m so grateful to have both diabetic and non-diabetic people in my life - I’d really be lost  without a good mix of all of you!

As usual, if you’d like to talk to me about any of these issues you’re having yourself, feel free to chat to me, otherwise I hope you enjoyed reading and it’s given some insight into the fun emotional turmoil that comes with diabetes! ;)

Following DAfNE, I decided to switch my Levimir to twice daily. This was a huge decision for me because I had always rejected the idea for several reasons:

I did not want to inject more than necessary

I may forget to take my morning dose

I didn’t want to carry another pen around with me

Until recently I didn’t have a routine, so I would wake up at different times every day

There were a lot of practical things to consider, but overall I decided I would benefit more from twice daily and so I made the switch. I went from 9 units at night to 5 units at night and 4 units at around 10am. 

Logically it makes sense. Levimir tends to last 14-16 hours, so thats 8 hours a day you’re not covered by basal, which can result in high, out of control sugars (fun). So you would think that to have two doses would cover you all day and you would have pretty steady sugars, right? Well this wasn’t the case for me. The one thing I noticed and the thing I hated the most was I would go to bed at a decent number and wake up abover 17mmoL/l. If you’ve been following my blog you’ll know that I struggle with anger towards my diabetes, especially when it goes wrong and makes me feel shit. To wake up in the middle of the night thirsty and needing the toilet, every - single - night really got me down. I was injecting in the middle of the night and feeling worse for wear the next day, 

The steady rise during the night became the bane of my life.

I wasn’t hypoing during the night and I wouldn’t be snacking before bed, so this was just ridiculous. I started upping my insulin until I was back to 9 at night and 5 in the morning. However, throughout the day I was incredibly up and down, I was dropping much faster but also shooting up after correcting, it was becoming ridiculous. 

This was taking place during my trip to Edinburgh too. I was hoping that in the following week, when I was in a more rigid routine, that it would start to settle down. But this wasn’t the case, my sugars remained high above my target range and it was very difficult to understand where I was going wrong, so a few days ago I decided to switch back.

I am now on 10 units at 10pm, and my aim with this is to see if my patterns change or stay the same. I seem to peak from around 10am to 2pm so potentially will need to up my breakfast ratio again. Ultimately if I can gain better control by changing my ratios rather than taking two basal injections, that would be pretty fab. I will potentially try to switch back to twice daily, but with higher doses of levimir and see where that takes me but I guess it’s all about trial and error.

Just as a side note, I’ve come to the conclusion that the Libre’s benefits definitely outweigh the negatives. Purely down to the information I’m getting from the Libre and the ease of scanning, I’ve decided to stick with it. I don’t think I’d be able to solve any of these issues without the help of the Libre. 

Let’s hope it all works out! Again, I’d love to hear all your comments and if anyone has struggled with the same issues I have, so please feel free to contact me - on here, facebook or twitter (I promise I’m nice!)

Love,

One of my goals in life is to do some solo travelling, I’d love to visit New Zealand next year for a couple weeks. However, one of the things that has always worried me about travelling (especially alone) is how to handle my diabetes: What if I get sick? If I’m backpacking, how will I keep my insulin? What if I run out of insulin? What if I have a bad hypo? How easy are snacks to come by in case of a hypo? How difficult will it be in non-English-speaking countries?

I am an anxious soul as it is, so to combine solo-travel worries with diabetes worries leads to a very stressful Gems. The thought of something happening so far from home and from the NHS, alone and not sure what to do stresses me out a lot. Mainly this stems from the thought of backpacking, which I would love to do but it would require a lot more confidence. I’m building up slowly, and last week I went away with two friends to Edinburgh, Scotland. This wasn’t too far from home, and I wasn’t alone but it was very active and in terms of my diabetes I found it very challenging, so I’m here to detail it all to you, rants and all!

Our first morning in windy Scotland, I met my first (and probably biggest) challenge whilst away, we climbed Arthur’s Seat. Now this isn’t a particularly challenging hike (completed it in dungarees and vans) but as someone whose idea of strenuous physical activity is climbing back upstairs because I left my phone on my bed, I was certainly challenged to say the least. So, following the DAfNE rules on exercise, I took 1 unit less Levimir on Tuesday night. To break this down:

10.20am

BG: 14.9, CP: 2, QA: 2, LA: 4

I was 14.9 at breakfast I didn’t correct, I also reduced my NovoRapid to a 1:1 ratio, where at breakfast it is usually 1.5:1

(For the non-D’s, BG is Blood Glucose, QA is Quick Acting insulin, mine is NovoRapid, LA is Long Acting, mine is Levimir and CP is Carb Portion which is 10g of carbs. The ratio is QA:CP)

12.18pm

BG: 23.3 (going up)

So off we head, to kill my legs up a bit ol’ mountain (technically a hill, but my muscles will say otherwise) and needless to say, between aching limbs and a shortness of breath I was feeling pretty rough and was also concerned about being so far up a hill if I was to hypo. So I did a bit of good old curiosity checking (which is definitely allowed in such conditions… just in case any of my nurses are reading this) and the very high reading was a bit worrying, as exercise with high sugars isn’t exactly recommended, and also because I felt like shite. However, I still had my NovoRapid in my system and I just needed to trust in the DAfNE guidelines, so we continued onwards (and upwards).

2.17pm

BG: 20.1, CP: 4.2, QA: 5

We reached the top, took some standard “we made it” pictures and headed back down (by far the best part for me and my little legs). Off we headed to Princes Street for some lunch. My sugar was after coming down a little but not by much and so I rounded my insulin up to 5 to give a little boost without correcting (in hindsight, 4 would’ve been fine). The rest of the day consists of more walking, and Edinburgh is very, very hilly…

7.01pm

BG: 3.6, CP: 2

8.12pm

BG: 4.1, CP: ???, QA: 5

I felt this one, it was right as we were waiting for our table at Civerinos and so I had one orange juice to set me right before my dinner. I ate less than half of a gorgeous, albeit spicy, pizza and had to take a bit of a stab in the dark as I could not for the life of me find the CPs in less than half of a sourdough based pizza. The waitress was so lovely and tried to give me a lot information about the pizza when she found out they didn’t have a nutrition menu (just had to add this in because it’s excellent service and food if anyone fancies a visit!)

Civerinos!

10.23pm

BG: 11.9, LA: 4

Off to bed, and again took 1 unit less Levimir ahead of more traipsing around the city for the next day.

My sugars over Wednesday and Thursday were ridiculous, I was pretty much consistently high throughout the day and had a couple hypos in there just for that special yoyo effect. Unfortunately this affected my mood and my energy too, I was in bed early Wednesday and Thursday night and the entire time I was away I was constantly worrying about my sugars and feeling like an absolute failure. But I think this was a very good lesson for me, because looking back over my sugars now I can see the trend that they’re high throughout the day (in which I’m quite active) as can sometimes be expected, and they drop in the evenings (a delayed hypo). So I don’t think it was quite as bad as I was imagining it, but it did feel pretty horrendous to be consistently high when you’re meant to be enjoying yourself!

Not quite in range...

I’m about to start my new job on Monday and it’s a weekday, 9-5 deal so I feel as though this will be an excellent opportunity to get into a good routine and I’m thinking for the first week or two I’ll keep my meals the same or very similar so that I can see patterns more clearly and make sure my background is correct, and my ratios are working. Currently, since splitting my basal insulin, I’m struggling to see where the issues lie - whether it’s miscalculated carbs, my background isn’t correct or whether it’s something else entirely, so I’m looking forward to hopefully figuring some of that out. I’ve just upped my basal to 6 units tonight, as my sugars seem to be rising from 6/7am and by the time I’m awake, they’re already above 16 mmoL/l. So we’ll see how that goes and I’ll continue on 5 units in the morning.

To be a diabetic is more than to inject and to plan meals, you become a mathematician and a self-counsellor. You become a scientist, you experiment and find patterns and record your findings and adjust accordingly. Except this experiment is not controlled, it’s constantly changing and throwing obstacles at you, and that’s because you are the experiment and life isn’t a stable and controlled environment. So my plan for now is to attempt to get my basal and my ratios correct whilst I’m in a routine, and once I have that figured out, adjusting for exercise and holidays will be much easier - New Zealand here I come!

Love,

Your core is vibrating at a low frequency, it’s muted and subtle but it’s worse than pins and needles, it’s uncomfortable. Every cell is vibrating, it is the only thing you can focus on, yet you feel a million miles away. You want to just continue sleeping, or talking, or watching tv, but this faint voice is insisting you “DRINK THE BLOODY ORANGE JUICE!”. Everything feels as though it’s happening on the tv and not to you, you reread the same line twenty times or ask someone to repeat themselves for the fortieth time. Even when you’re trying with all your might to focus on the task at hand, it still slips past your consciousness. You feel hollow and have a deep hunger, unlike anything you feel when you haven’t eaten in hours, you want to fill up that hollowness but it feels as though anything you eat or drink will fall straight out at your feet. It’s physically one of the most uncomfortable and frustrating feelings I know.

Generally, when describing hypo’s, people will say they feel ‘shaky’ and ‘hungry’. For me, it’s much deeper than that, it’s something you feel everywhere. You feel like an empty shell about to crack. Your legs feel heavy and immobile and your head feels light and fragile, you barely feel your arms. On the other end of the spectrum, usually if I’m busy, I’ll do everything a mile a minute, including talking. I also get very giggly and silly, and I won’t notice my sugar is low until I do my ‘hypo laugh’ (usually a loud “HA-hahahaha... shit I’m low”) and very suddenly I feel like my legs are going to buckle beneath me.

Thankfully for me, I’ve never had a bad hypo and ninety-nine percent of the time, I treat them myself, an orange juice and some cereal usually does the trick. Probably one of the worst things is when the hypo makes you feel sick and the last thing you want to do is eat or drink something sugary - and sometimes the easiest and quickest thing is to literally eat a mouthful of sugar (honestly for something so sweet it is the most disgusting thing I’ve encountered). But you just have to suck it up and get yourself out of the hypo (which is below 3.5 by the way, although for me I consider it below 4) and tell yourself you’ll be fine after, which you will be.

The discomfort I get from these hypo symptoms often make me very angry, it’s difficult to explain, but it feels so horrible that I can only respond in frustration and anger. But anger is also a symptom of hypoglycaemia. Unfortunately the only person who spots my hypo-anger is my mother - no one else realises that I’m snappy, angry and mean due to the lack of sugar in my blood and my brain. For some non-diabetics this can be difficult to understand because they either think that when your sugar is low you can’t just control your emotions, or they think your emotions are due to your sugars and in both scenarios, your feelings are invalidated. Typically, if you snap at someone for no reason, they have a right to be like “uh Gemma… that’s uncalled for” however, when your sugar is low your anger can just come out before you even realise your sugar is low and in this case, whilst you don’t mean to take it out on your poor mother or cat, it’s not as though it can be controlled and it’s one of those things that just comes with the territory of loving their diabetic. To love a diabetic, as a friend, a family member, or a partner requires patience at times and this is one of the things that many people don’t realise. Yes, there’s needles and glucose levels and a chocolate drawer, but to have a relationship with a diabetic really extends to the emotional support, patience and understanding, especially with hypo-anger. This also means learning to identify hypo-anger and not confusing it with real emotions we experience regardless (being a diabetic does not mean my human emotions are all down to my sugars and they are ALL valid).

Hypos are also not one-off incidents, for example, whenever I have a night-time hypo (this can be 10 minutes after I fall asleep or right before I wake up) I will without a doubt, be wiped out the next day, even if it’s not a particularly bad hypo. Hypo’s and the effect of your sugars not staying within a suitable range can leave us feeling exhausted, fed up and sick. For those living without diabetes, it’s not always easy to see and to remember that diabetes has an effect on us every minute of every day, on top of dealing with normal life and this is what we want you to remember. I don’t need to be treated like a fragile cup, but I need awareness, understanding and sensitivity when required from people who care for me, because diabetes doesn’t just happen when your sugars are high or when they are low, it’s 24/7 and for the rest of my life. (Unless of course they come up with a cure, in which case yay!)

And just to name a few, here are some symptoms to watch out for if you think someone may be hypo (if they’re diabetic and have been drinking PLEASE don’t just put them to bed):

Paleness

Anger/Change in behaviour

Shaking

Lack of focus

Giddy/laughing/drunk-like appearance

Wobbly legs

Feeling ill

Hungry

I hope this post has highlighted some of the ways in which hypos affect the lives of diabetics, and explained that hypo-anger is not something to be taken personally (just run and grab the OJ). I also hope that I’ve helped to explain how long term the emotional effects can be and that it is something to bear in mind when helping to care for your favourite diabetic.

Love,

Gemma

It feels as though my sugars have been worse than ever the last few days. Between highs of 20 and lows around 3 I feel exhausted and fed up. Particularly after DAfNE, seeing all these numbers makes me feel like a failure - I don’t understand why I can’t get it right, and I’m questioning what’s wrong with me? At this stage most people jump in with their positivity, “start again tomorrow” or my favourite, the vague “it’ll be okay”. When I’m in a diabetes-gone-wrong huff, the positive chirping of non-diabetics can be extremely annoying. However, personally I feel that these huffs and feelings of failure are necessary in growing as a person and in dealing with the anger that comes with diabetes and its bloody incomprehensible nature. So thank you to the positive chirpers, but please let me wallow in my high sugars in peace.

To be precise with this week’s diabetes-gone-wrong series, I’m struggling to find reason or patterns in it: one evening I fell hypo a few hours after dinner (I was in the cinema and took what was probably too much insulin to cover my popcorn and minstrels) and corrected with an orange juice, the exact same I always do, except a couple hours after the correction my sugar rose to 18 and I'd eaten nothing else. Today my sugars plummeted from 20.2 to 3.6 in around 2 hours and in the middle of a sale, despite eating a couple of minstrels a few minutes earlier to attempt to ward it off. I dropped again two hours after my lunch and rose up to 17 before dinner. I am well and truly frustrated with my body right now. 

I am, however, wondering if perhaps a lot of this frustration is stemming from my Freestyle Libre. If you’re diabetic i’m sure you’ve heard of it, for those who don’t know, it’s a testing kit that constantly monitors your sugars via a sensor in your arm, to get a reading you simply scan the sensor. It has many benefits, one being you don't have to prick your finger anymore. Plus it's much faster and creates lovely graphs so you can see exactly what’s happening. However, the down side for me is that in knowing that my sugar is dropping or going up it's making me more reactive - I'm taking more insulin or eating more carbs to ward off the future hyper/hypo - but also forgetting that the Libre runs on a delayed time and that my sugar may well be going in the opposite direction by the time I've given my insulin or carb correction. Plus it's stressing me out whenever I prick my finger and find out my old testing kit is coming up with a completely different number to the freestyle Libre. Plus the anxiety of having a graph of my results constantly in front of me showing me how out of range I am can promote that feeling of “I’m gonna smash this stupid machine against the wall" (maybe I should look into plate smashing therapy).

One of the other things about the Libre is the attention it draws. For me, I forget it's there, for everyone else however it's "what's that thing on your arm?!” Having to explain six times a day what it is, what it does and discussing the benefits and drawbacks with people who - though they mean well - have a very limited knowledge of diabetes, is absolutely exhausting. It's a constant reminder that I am diabetic, and a bad one at that (or at least that’s how it feels) and even when I'm frustrated and annoyed with my own BG levels, I must still engage in polite conversation about the Libre when often this is the last thing I want to do. This is one of the reasons I don't want to be on the pump, I don't think I could stand answering everyone's questions. I completely understand the curiosity and I'm aware of the chance to educate those who may not understand diabetes that well, but my life vocation isn't to be an educator of diabetes or otherwise, that's not what I signed up for. When I'm feeling horrible about my lack of control and feeling horrible physically because of the toll it takes, I can definitely feel a bit of resentment creeping in towards those who seem to feel they have a right to inquire with shock and sometimes slight disturbance, about the "thing on my arm".

Of course, these feelings of resentment are somewhat fleeting and I don’t hate anyone for being curious or asking questions. But, in all honesty, one of the drawbacks to the Libre is that it feels like a stamp that says “feel free to ask anything you’d like, warranted or otherwise.” When I’m making my way through Harry Potter, I’d like to get lost in J. K. Rowling’s fantasy and not discuss my frustrating reality. Is that too much to ask?

To swing it around, the benefits of the Libre are vast. Particularly for working in retail, being able to scan my sensor and get a reading immediately, saves me a lot of time, as do the arrows - knowing if my sugar is rising or dropping helps me to know how to act (though I still need to work on balancing my reactions). It is also (though at times upsetting) extremely helpful to see a graph of how exactly my sugar is acting as it’s much easier to notice patterns and adjust my insulin and my ratios accordingly. However, sometimes I do wonder if my anxiety may get along better with singular readings, if between meals my BG echoed the outline of Everest it’d probably serve me better not knowing.

To conclude: The Diabetes, it sucks. The Libre, I haven’t decided yet. But, I’ll listen to the chirpers for once, tomorrow’s another day and I’ve got this.

Love,

I’m 12 years old, it’s September and I’ve just started year 8. My life is as normal as you would expect, I have a sweet tooth and I love playing out, I’ve just made a new friend, Abbey (she’s still gonna be my best friend in ten years time). Mum was diagnosed as diabetic around 2 years ago and at this stage, they still think she’s type 2. 

“Mum I’m growing, which means I’m more hungry so I eat more, and because I eat more, I drink more, which is why I’m going to the toilet more.” I say to my mother, fussing about how much I’m eating, drinking and going to the toilet. I climb the stairs and I have to sit down, I’m out of breath. I’m one of those kids who loves all those sour sweets and the sugar tubes, for me right now the worst thing would be to be diabetic. Really, I’m scared of a diagnosis so I repeat those words like a mantra, trying to convince myself and fool my mother (don’t think that worked). 

One night the three of us (mum, dad and I) are out. When I get bored, dad brings me to the shop to get sweets and magazines and tonight is no different. Except tonight, mum insists on checking my sugar… and it’s HI. For those of you who aren’t diabetic, a normal range is between 3.5 - 6.7 mmol/L, and HI is above 33.3. I wash my hands, I retest, it’s HI. My stomach drops, I am absolutely terrified of the number on the tiny machine. Once I’ve seen that number there’s no going back, no more denying or explaining, my life is about to change. We get home and I cry to my mum “what if I’m diabetic? What will I do? I don’t want to inject myself! Could I be on tablets if I really am?” At this stage, my mum and I both know I’m diabetic but we’re both blindly clinging onto the sliver of hope that the reading was false. My mum simple tells me “let’s go to the doctor and see what happens, but if you are we will get through it, you have nothing to worry about.”

And so the next morning rolls around and we’re at the GP. He says I probably ate too many sweets*, but mum isn’t having it and she insists I am checked properly. We’re sent to A&E and it’s as though someone’s given me laughing gas, I’m practically delirious, I get my bloods done and I settle into my new bed for the next couple nights in the Rainbow Ward. September 19th 2007, my day of diagnosis. 

At this moment in time, the worst part was the fear of the diagnosis. The first injection my mum gave me was the most painful thing ever and I was bruised, so I didn’t let her do anymore (thanks but no thanks) and this turned out to be a blessing in disguise because I only trusted myself to do it, which essentially got me over that fear. The injections soon turned out to be the least of my worries, diabetes will significantly have much more of an emotional impact on my life than a physical one. To begin with, I was positive and ready to face it head on, but then puberty hit, as did a few traumatic life events and I became increasingly angry at myself and at the unfair hand I felt I was dealt. I didn’t want to be diabetic, I didn’t want diabetic friends, I didn’t care about that. I just took enough insulin to keep me alive but not enough to retain good control. I wanted to minimise the impact diabetes had on my life, I wasn’t going to waste any of my precious time carb counting or talking to doctors who didn’t get it beyond the facts of my condition. 

My paediatric consultant was a nightmare, he was a classic example of the aforementioned doctors. He would never hide his disappointment in my lack of commitment to the illness I didn’t ask for. He routinely used scare tactics to pressure me into going on the pump (a device that automatically delivers insulin). The pump has many benefits, but it isn’t for everyone, and it isn’t for me. I don’t fancy the idea of being permanently attached to a lifeline, I’d rather carry it in my pocket and feel that detachment. Most of my paediatric consultant appointments were a standoff, and my consultant addressed my mother most of the time, despite the fact I was well into my teens and took care (to an extent) of my diabetes myself. These appointments usually had me holding back tears, it was fairly traumatic to say the least. If only he could see me now! (I’d still probably hate him to be honest).

I’m hoping this story gives you guys a bit of background to my experience as a diabetic, and I hope it helps you all to see why this is such a big step for me. I tried to live in ignorance of my diabetes, but I’ve decided that ignoring it only makes my life harder. I also hope that it will show to those of you who may be struggling with similar feelings that I completely understand and I will never portray a version of my life in which everything is perfect and ideal, because it’s far from it. I know from experience that telling a diabetic that “all you need to do is…” is the absolute worst thing to do, especially for me, I’ll dig my heels in and refuse to take care of myself just to be stubborn because who are you to tell me how to look after myself? When you don’t understand the emotional repercussions of what seems to you to be so simple? I know exactly how that feels, but I have also grown to learn that I’m only hurting myself with this attitude. So instead I decided, I’ll write a blog which will help not only myself but other struggling diabetics to take care of ourselves but with additional support that we often fail to receive from the experts. 

I’d love to hear about any of your diagnosis stories or any comments so please do get in touch! I love a good chit chat, so you’re all welcome to chat :)

Love,

Gemma

I’m a Type 1 diabetic and decided to start this blog to document my post-DAfNE journey and to meet young diabetics like myself. 

To introduce myself: 

I’m 21 

I was diagnosed in September 2007... nearly 10 years!

I studied English at the University of Birmingham and graduated last summer

I am now working in London, living with my parents (for now)

I have a slight tea addiction

and a slight shoe addiction

My current goal is to have the confidence to travel for at least 3 weeks

So for those of you who haven’t heard of it, DAfNE is a diabetic course provided by the NHS, standing for Dose Adjustment for Normal Eating. Basically you spend a week in a classroom with a bunch of strangers (and in my case, my fellow diabetic mother) learning about your diabetes, learning how to carb count, about carb ratios, rules for sick days and way more. You put it into practice (the great debate of the banana weight, skin on or skin off still confuses me) and discuss the results with your new-found friends.

The thought of this was daunting - and having been traumatised by my paediatric consultant whose favourite technique was to insist I controlled my diabetes in his way (DAfNE was one of the suggestions) and continue until I cried- I wasn’t completely on board with the idea of the course. However, the only negative part is knowing that my horrible consultant was actually right on this front. I learned so much I didn’t know before and I find it difficult to believe only a week ago I barely tested, let alone counted carbs! 

DAfNE, in one week, has given me a new found confidence and has helped me start this blog. I want to create a space in which I can document my own journey and where I can meet and share the stories of other young diabetics. Hopefully, if you’re reading this you can teach me something new or you may learn something too.

I plan to share some of the information I learned this week, how I manage day to day, which apps I love and the challenges I face. If you have any ideas please let me know - this is new for me too and I’m open to everything!

One of the most important things for me is for this to be honest. Diabetes has often been the absolute bane of my life and I have felt everything from frustration to anger to depression, but also triumph, confidence and bravery. It is something I have tried to ignore and something I have been anxiously hyper-aware of, something that has affected my work, my relationships and my choices. But it has never been something that has hindered me, I have met many of my goals and plan to meet many more, whilst living with and embracing life as a diabetic. I won’t pretend that I have perfect numbers or that I know everything and I won’t force a sermon on you about “staying positive”, we are human and we have complex emotions and we’re allowed to get angry and upset and we’re allowed to be perfectly imperfect. But this is a place where someone else understands and gets it and no matter the lows, you and I both will get through it.

Don’t stress, we’ve got a long way to go. 

Love,