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Posts tagged ‘high blood sugars’

Jun 23 / Caro

To the Parents of Children With Diabetes: You Can Do It

I’ve seen a fair few new diabetes diagnoses popping up lately, and a lot of new blogging and tweeting on the subject, from parents who’ve literally just been dunked in the deep end. In my former life as a diabetes-centric blogger I was used to reading diagnosis stories, and tales of all the literal highs and lows of life as a parent to a child with diabetes. There were, and still are, plenty of them out there. What is different for me this time is that these are blogs which I followed, or at the very least was aware of, long before diabetes entered the picture. And something about that fact has really heightened my awareness the sheer smack-upside-your-head-turn-your-world-on-its-axis nature of this kind of diagnosis.

Forgive me. I was three when I was diagnosed. I certainly didn’t have a clue back then and I don’t think I’ve ever appreciated it before in quite the way I suddenly do now, no matter how ridiculous that sounds. I just don’t know what it feels like to go from knowing very little about diabetes to having to integrate it, and all its associated behaviours, in to your life.

What I do know is exactly what living with diabetes means. I know how the specific thirst of a high blood sugar feels. I know what a low feels like, and what the hangover can do to you. I know the fear. I know only too intimately all the bloody frustration. I will never, ever be the person to make one of those ridiculous comments about sugar – or worse – that are all to common. I can tell you that I absolutely understand.

I feel I need to say more, though.

If you are the parent of a child recently diagnosed, or perhaps going through the transitions of puberty, or an adolescent rebellion, I need to say this to you: Diabetes didn’t stop me.

It’s very easy to get bogged down by the minutiae, the day-to-day of blood sugars, boluses and carb counts and not look up, on and ahead. Life is still very much there for the living, and without wishing to trivialise the impact of diabetes, live it you can. Honestly.

Where there is a will, there is a way. Almost everything takes more planning and preparation with diabetes, but I’ve travelled across the globe (alone, at times), gone to University and partied the night away, competed in a variety of sports, lived alone as well as with others. I have a responsible, professional job after years of study and hard work. And most of all I have a wonderful husband and an amazing son. All of it, achieved with – despite, if you like – diabetes. There has been almost nothing that I’ve ever wanted to do thatI have been unable to do because of diabetes.

A diabetes diagnosis changes things, but it doesn’t have to end dreams or goals or the pursuit of a fulfilled life.

I also need to say this to you: It’s a marathon, not a sprint.

Sadly, we have to face the fact that this could well be forever, for this generation, if not for the next. At some point you have to take a step back and look at the bigger picture. Each high blood sugar is not a tragedy in itself. Even a few weeks of high blood sugars is not an automatic passport to complications further down the road. Good control is important, but good control does not mean perfection. I appreciate that there may be an element of luck involved, but if I look back over the last 32 years of diabetes I must have had countless months worth of extreme blood sugars (particularly taking account of that period in time where taking insulin regularly slipped off the bottom of the to-do list, but we won’t go there now) and I’m still kicking. I’ve faced the worst that diabetes has to offer. I’m not proud of my hospital admissions for ketoacidosis, but they’ve happened. I’ve had low blood sugars leading to me passing out and having seizures in public. For the parents of a diabetic child, it’s the stuff of nightmares. I’m not telling you these things to keep you up tonight. And I’m very definitely not suggesting that you don’t try your hardest to avoid them happening. I’m just telling you that I’ve been there and done it – and I’m still here talking about it. Most importantly at all, I’m not some sort of failure because those things occurred. Diabetes, ultimately, is the thing at fault.

IMG_3194

And what you need to remember is that each time you hit the bumps in the road, no matter how bad the numbers seem, they aren’t the only thing that matters. Remember: Marathon; Bigger picture; Don’t obsess over the individual numbers, the single days or even whole weeks. Each time you navigate a storm, you are adding to your metaphorical toolbox – and more importantly your child’s metaphorical toolbox – for the future. Next time you’ll have additional skills to know how to get over those same bumps. Or if you can’t get over them the same way (because diabetes has a nasty habit of throwing curveballs and changing the rules) you, and your child, will have a greater belief that you will get around them eventually.

And having that understanding that you can do it, even if it sometimes takes a while, is the key. It makes an enormous difference.

I need to remind you that you can only do your best. You best is good enough.

Look at me. There have been many times where my best has fallen very far short of perfection, yet I’m still doing it.

And I know that you can do it too.

My words, as always, don’t somehow seem enough. But I see all of you working so bloody hard to keep your kids healthy and safe whilst giving them a normal childhood alongside, where diabetes does not steal all of the focus. And standing here, on the other side, I believe in you.

I really do.

Because you can do it.

You can.

Sep 9 / Caro

What to Say to Someone Newly Diagnosed With Diabetes

As a person with diabetes, I can’t help but experience and involuntary spark of sadness every time I hear about someone else being diagnosed with this condition. True, it’s not the death sentence that is was a hundred years ago, but it’s still a life changing diagnosis, and one that I very much wish no one else ever had to receive again. When the person is someone who I know well, the spark becomes a full blown fire. And a couple weeks ago, it happened. For several days after hearing the news, it came to mind repeatedly. Uninvited and irrepressible, a mixture of shock and sadness flooding my thoughts. But amongst that was also an odd sense of, I guess, responsibility. I knew that somehow, I needed to find the right words to say. I felt a weight of expectation to know how to make this all seem a little bit better. It was something I wasn’t totally sure that I could do.

Here’s the reality: I was diagnosed with diabetes at the age of three. I literally do not know any different than living with diabetes. My diagnosis is pretty much my earliest memory, so I have no specific knowledge of what it’s like to go about daily life without the intrusion of wayward blood glucose levels, finger pricks and injections. My newly diagnosed friend is in her early twenties. She’s used to a life full of carefree fun and spontaneity. She’s at the start of her career, and just gaining full independence from her parents, making her own way in the world.

I don’t know how that feels.

To have your life turned upside down overnight. To have so much that you’ve taken for granted changed. To have very recent memories of a life where carbohydrate counts don’t matter and routine is a foreign concept. To have to suddenly learn to integrate medical procedures in to your day to day.

I was afraid of not being able to empathise with that experience. Not being able to offer any kind of support because it all seemed so far away from my own experience. And add to that the thirty-one years of gradually accumulated diabetes knowledge that I sometimes take for granted, and I was very aware of the gulf between me and my newly diagnosed friend.

I suppose I didn’t want to scare. Or to overwhelm. Or to assume. I wanted to find a way to be supportive without trivialising it, but without making it seem like the worst thing in the world. As always it’s striking that fine balance between showing how eminently possible it is to live well, and fully, whilst making it look fairly easy, and understanding that actually it is serious, and it can be hard work at times. Most of all, I didn’t want to be annoying. I didn’t want to pop up as the person knowing all about diabetes and feel like i was piling on pressure or judgement in any way. I must admit that in a selfish moment, it occurred to me that I would now be seeing on a day-to-day basis someone who will (eventually) have lots of their own knowledge about diabetes and that there would be a possibility that I would begin to be judged for choices, actions and bad habits (hello, never changing my lancet) that others don;’t know enough to judge me for. That thought made me aware of not wanting to be the one putting the pressure on, or seeming to be watching as she finds her feet.

In the end though, it was that thought that saved me. Because when I replayed it over to myself, I realised what I have gained: someone who will also understand diabetes intimately.

What I actually said, when the moment arrived, came completely naturally. It came from my heart, and the tears I choked back as I started were absolutely genuine.

I told her that everything will be OK. It will be different, but it will work itself out, although that will take time. I told her that it would be hard work, but that the rewards are absolutely worth the effort. I was able to share some of the crap things people will say and a way to develop a mindset to ignore them (plus a couple of cutting comebacks!). I was able to help reassure that numbers aren’t something to panic about, or feel guilty about, but are simply information to help us live as well as we can and make the best choices. We talked too about family pressures. Being a mum myself now has helped me understand the desire to take away anything bad from our children, and to always worry about them. I hope I was able to offer some insight and help with the feelings of being over closeted by a parent having experienced now from both angles.

Most of all, however, I was able to simply reassure that I “get it”. I understand. Two short, and powerful words. Our exact experiences may be different, but I know what it feels like to prick my fingers multiple times each day. I know that injections are the easy part, when others recoil in horror and say they could “never do it”. I understand the fear of hypoglycaemia. I know what a high blood sugar feels like. And I’m able to be there as much, or as little, as needed for a advice or a moan, or to celebrate a triumph that only a person with diabetes can understand.

And that really cemented the idea of my own gain. Blessed as I am to have several friends with diabetes and to know where to look for support online, I don’t currently see any of those people on a daily or even weekly basis. Suddenly, after all this time, I’ve gained an ally too. And far from fearing that I’ll be judged, or watched more closely, I feel like part of a team. Someone close to me understands what a middle of the night high blood sugar does to your mood on waking. Someone close to me has the little telltale black dots on the tips on their fingers. Someone else understands what it means to want to control something that does its level best not to be controlled. There is no substitute for camaraderie.

I didn’t need to worry about what to say. “I understand” was enough.

Vibe CGM Graph

May 11 / Caro

More Musings on Diabetes and IVF… and Carbs

I’ve already mentioned that one of the main things I’m doing differently in the IVF cycle is really focusing on my diet. It’s always made sense to me that what I put in to my body has the potential to affect the quality of the eggs that I’m growing. To that end it seemed logical to choose fresh and natural foods in preference to processed ones, and to choose the best quality ingredients available to me. But this cycle, I wanted to think beyond that.

Thanks to type one diabetes, I try to stick to a lower carb diet, since carbs are the macronutrient which has the greatest and most immediate effect on blood sugar levels. Now isn’t the time or place for a dissertation on carbohydrates or my feelings surrounding the recent sensationalism of the so-called “paleo” way of eating, but suffice it to say I’m not interested in labelling the way that I eat, or being particularly evangelical about it. Diabetic since the age of three, I grew up thinking about carbs, and counting them in every meal. I’ve been eating the way that I eat now for more than ten years and I just do what works for me and my health. On a day-to-day basis that means being careful about carbs, but I still indulge in bread, pasta and plenty of cake as and when the time is right. Eating lower carb, however, almost inevitably leads to an increase in the proportion of the diet that is composed of protein and fat. So when I learned before our first IVF cycle that a high protein diet is recommended during the stemming phase, I felt pretty set. I didn’t think specifically about the carbs and I didn’t delve in to it further.

This time I thought I’d check out the evidence for the high protein suggestion that seems to be so widely accepted. A quick Google instantly threw up plenty of results, most of which ultimately led back to a small study, the results of which were presented at the American Congress of Obstetricians and Gynecologists meeting almost exactly a year ago. There are plenty of problems with taking this as gospel. The fact that it is such a small study, with seemingly limited control of confounding factors, and the fact that it has not yet been published in a peer reviewed journal chief amongst them. But the findings are intriguing enough. Especially the specific relationship between low carb diets – less than 40% of calories from carbs – and IVF success rates – jumping up to 80% in this group.

Given that this may well be our last attempt at IVF, I need to feel that I’ve done it right. And suddenly my usual casual attitude to my diet doesn’t seem enough. I feel I need to make minimising carbs an absolute priority because limiting carbs is much less likely to cause a problem than eating them excessively.

I should have left it there. I should have kept my focus that simple and not over-thought it. But me being me, I couldn’t leave it alone. And given that carbs are the subject of discussion, it didn’t take very long until I began stumbling across references to insulin levels and blood sugar levels. And then the fact I’d been trying to avoid hit me in the head.

The conclusion in the popular media is the same one that crops up over and over again when anything to do with carbohydrates is discussed. They apparently cause “soaring blood glucose levels” and it is the blood glucose levels rather than the carbs themselves that are likely to do the damage.

An easy way to annoy a type one diabetic is to talk about food causing “soaring” or “skyrocketing” blood glucose levels in non-diabetics. If you haven’t experienced a blood sugar level of 20mmol/l, you have no idea what “skyrocketing” means. And here’s a hint: if you don’t have diabetes, you haven’t. Blood glucose levels can and do vary in non-diabetics, but by definition, if they get ups above around 6.5-7mmol/l, you’re probably in the club that no one wants to join.

This doesn’t, of course, mean that the assumption that raised blood glucose levels can harm eggs is a bad one. Any female diabetic will know only too well the list of potential complications for an embryo if blood glucose levels are not controlled during early pregnancy. The body doesn’t thrive with too much sugar running around in your blood stream, and it’s clearly not the best environment for creating genetically flawless material. I already know that.

But if the assumption is correct, that higher carb diets are detrimental because of the variations in blood sugar levels in non-diabetics, then what hope do I have? Suddenly this is all about so much more than my diet. Of course I work really bloody hard to keep things as stable as I can. I eat lower carb for precisely this reason – to minimise the swings. But inevitably my blood sugars stray up to the 7 or 8 region more often than in a non-diabetic, and also stray higher than that. And then I have a day like today:

Vibe graph

The red lines are all numbers above 7.8mmol/l. The gap in the graph spans about three and half hours where the sensor was changed over. I wasn’t high that whole time – in fact, I had a fairly epic low. But when I look at the rest of the afternoon, I can’t help but feel that I’ve messed up our chances of this working before we’ve even got to the exciting part.

Rationally I know that people with diabetes get pregnant all the time. They even get pregnant as a result of assisted conception all the time. and they also conceive with less than ideal control and experience no complications. My control was good when we conceived Thomas, but I’m sure I had similar strays in my blood sugars that month. It’s just that it seems like we have so much against us in this. We know that the embryo implanted last time, that I don’t have implantation issues, nor any of the other major leading causes of recurrent miscarriage. So the most likely reason for failure is a genetic one within the embryo.

I just feel as though I can’t possibly do enough. Despite the fact that my conclusions are based purely on assumptions and that the effects of diet are unproven never mind the causation of the effect, I still feel hopeless. Diabetes is a beast that just can’t be tamed all of the time. And I feel as though it has the potential to steal our last chance, no matter what I do.

May 22 / Caro

For My Babies

I’ve been living with type 1 diabetes for three decades. Three decades sounds like a long time, but the truth of it is that I don’t remember a time before diabetes, so it only feels as long as my lifetime. Not knowing any different doesn’t mean it doesn’t bother me though. I’d absolutely be lying if I said it wasn’t sometimes an unequivocal suck.

I’ve mentioned countless times before that diabetes is an irritating and pernicious creature. There is nothing predictable about diabetes, and it has the capacity to affect every aspect of life whilst equally being affected by a ridiculous number of variables – beyond the obvious food, exercise and insulin doses comes stress, hormones, the weather and whether the day of the week contains the letter ‘u’.

I’d also be lying if I claimed to have this thing all figured out. I’m not sure that is even possible. There are plenty of times where I simply cannot be bothered with all the effort it takes to try to tame it. Some days I feel as though I’m chasing my tail from high to low and back again without doing anything differently to the day before, when everything stayed nicely in line, and that frustrates me beyond belief. So sometimes I give up and give in, stop trying to achieve the best control and simply coast along.

When I was a teenager, that was the most frequent state of affairs. As a young adult, the balance shifted to more time taking care of myself than not, but still with periods of time where I must hold my hands up and say it was completely neglected. In recent years, things have changed again.

Now, on the days when I can’t face multiple blood tests, the days where I want to eat without counting every last carbohydrate, or exercise without thinking about manipulating my medication, on the days where trying to find somewhere comfortable to wear my insulin pump sends me in to a rage, I try to stop and really think about what I might be sacrificing for the sake of a few minutes thought and effort.

I look at Thomas, and I think about the future. By the time I am my mother’s age and Thomas possibly has children of his own, I’ll have been living with diabetes, and taking insulin, for over sixty years. That is a long time, espeically when you consider that insulin for the treatment of diabetes has only existed for ninety years. But I know that I want to be there to see my son, and any future grandchildren, grow up. And I want to actually see it with my eyes, not be blinded by retinopathy. I want to be active enough to run around with them, and do so on my own feet. I don’t want to miss time bonding with them whilst I am attached to a dialysis machine.

And right now, I want to offer my future unborn child(ren) the very best start that I can. I want to keep finely balanced on the high wire of tight control, just as I did before and during my pregnancy with Thomas.

All my life the thought of complications from diabetes has nestled in the back of my consciousness and been something I’m peripherally aware of. But I’ve never been someone to be actively afraid on a day-to-day basis. It would be fair to say that blindness is one of my greatest fears, and that I’ve always wanted to try to stay healthy for my own sake, but the thought of complications, and their effect on my life alone, as a motivator for good control pales in to insignificance compared to the motivation to keep my babies healthy and to stay healthy for them.

I’m aware that this whole post sounds trite and twee, but it’s honestly true that where diabetes is concerned, I’d do almost anything for my children. I’m still far from perfect, and frequently get it wrong, but I am sure that I will never stop trying.

Walking a tight line

Feb 11 / Caro

TTC With Diabetes

This is a post that I’ve been hesitant to write, because in some ways it feels a bit too intimate. Laying all my cards on the table opens me up to expectations and people asking me if I’m up the duff yet. I do wonder if it would be better to wait, and simply make an announcement when it happens, at a stage in the pregnancy that I feel comfortable to do so. But at the same time, this is something which is very important in our lives right now. It’s a part of our journey with Thomas that I didn’t really record, and this time I want to remember what it’s really like.

So here we are. We’re officially trying to conceive.

Everyone knows what trying to conceive involves. Plenty of frequent bedroom antics in the hope that a single sperm reaches the elusive egg. It’s important for everyone to take the best care of themselves that they can, and take their folic acid to reduce the risk of neural tube defects.

But diabetes has the potential to throw a huge spanner in the works when you want to make a baby. From the moment of conception, higher blood sugars than normal increase the risks of miscarriage and birth defects. The only way to mitigate these risks is to have the best blood glucose control possible.

But that isn’t always that easy. Diabetes is beast that isn’t that simple to tame. Everything that you can think of, from food to exercise, stress to the weather has the potential to affect your blood sugars. And of course blood sugars have the potential to affect pretty much everything in your life. That includes your hormones and hence, your cycles. And the more regular your cycles, the easier it is to conceive.

If you’ve read my entries from my pregnancy with Thomas, you’ll realise that I was quite obsessive about keeping good control, and would have done anything and everything to keep him safe. But back then, diabetes was pretty much my sole focus. True, I also had a stressful full time job, but now I have a stressful part time job and a demanding toddler, as well as diabetes which an be just as stressful as the job, and just as demanding as the toddler.

I have a feeling that things will be a lot tougher this time. But yet, somehow, I want it that much more.

When I was pregnant with Thomas, hearing about people desperate to conceive their second or third child always made me think “But at least they have one child already. It’s not the same as wanting your first child”. I couldn’t understand how the desire could be so great as for a childless person. It’s true that it’s not the same, bu tnot in the way that I thought. Now I don’t just want a child for myself, I want a sibling for my son. And I feel more pressure and in a much greater hurry to get pregnant because I don’t want a huge age gap between my children. To the point that I was ridiculously disappointed not to have conceived in my last cycle as it was my last opportunity to have a second child before Thomas turns two. I realise that two under two would be making life hard for me in so many ways, so please no one point that out. It was just a milestone for me.

The first stage of pregnancy prep for a person with diabetes is making sure that those blood sugars are good enough. In effect we need to be given “permission to try” by our doctors. Of course no one can dictate what you do, and there is no forced contraception, but it’s done for the best of reasons. I’m on board with that. The crucial test is the HbA1c, which reflects control over the previous three months. (For any geeks, it is percentage of haemoglobin molecules which have been glycosylated – or have glucose attached to them. The higher the average blood sugar, the higher this percentage will be. And it covers about three months as this is the approximate life span of a red blood cell.) For non-diabetics, the range is somewhere between 4 and 6%. The advised target for women wanting to become pregnant is less than 6.5%. See above for all the factors that affect diabetes if you think that is remotely easy to do for the majority of women with diabetes. It takes hard work and commitment every single day, and through the night too, since diabetes never sleeps.

This morning we made a trip to the hospital to receive my latest “report”. It’s ridiculous, but I was nervous to the point of feeling dizzy and sick. I want this so much that I was petrified my control would have slipped and we’d have to stop trying. I want this, but I also want it with the minimum of risks. Ian was ever patient, trying to calm me down and point out that I’ve hovered around 6% since Thomas was born, and there was no reason to think that would have changed.

Except the month I spent without my CGM when the transmitter died and i was waiting for a replacement. Except the mild excesses of Christmas. Except the afternoon highs that have plagued me for the last few weeks.

I felt as nervous as if I was going in to an exam. And in a way, that’s what it feels like. I know that the number is just a number. That it isn’t a reflection of my self worth. It’s just a number which doesn’t represent failure. It’s just a piece of information to help me look after myself the best that I can. But even though I know all that, it still felt like so much was resting on this.

When we were called through to be seen, the very first thing I asked, before I even said hello, was “What was the number?”

The minute it took to get the results up on the screen felt like it was going in slow motion. And then came the answer.

Six.

And I turned to Ian with a massive grin, not even caring that he’d won the bet and been closer with his guess.

I felt the kind of elation that comes after finishing exams and knowing that there is no more revision but sudden freedom.

Except, diabetes doesn’t stop. It’s a relentless animal.

I have to keep doing this over and over and over. I have to keep doing it always, but especially whilst we try to conceive. There can be no slacking. No coasting.

While other women obsessively track signs of ovulation and time everything with precision, I’m obsessively tracking my blood sugars in pursuit of not just a pregnancy, but the healthiest pregnancy I can mange with the complications of my chronic health conditions.

That’s how trying to conceive with diabetes is different.

Feb 4 / Caro

Diabetes and My Son

I was going to entitle this post something like “The Fear That Diabetes Might Affect My Son”. But then I realised that although he doesn’t have it himself, diabetes has affected Thomas almost since the moment he was conceived.

He managed to dodge the higher risk of birth defects, and the increased weight gain that comes from exposure to extra glucose in utero. But he was still evicted from my body by medical intervention before he, or I, were ready for it. And consequently he came in to the world through the sunroof, rather than by the more conventional route. No matter how much the medical profession debate it, we still don’t know all of the potential long term effects of being born by caesarean. An increased risk of developing diabetes is, ironically, one topic under scrutiny. If anything should crop up that could be related to the mode of delivery, then ultimately I’d have to attribute it to my diabetes too.

But it didn’t stop after the birth. My diabetes put Thomas at risk of low blood sugars in the early hours of his life as his pancreas tried to adjust. Fortunately he was fine, but as a result of the risk he endured heel prick tests in those precious first hours. I know they didn’t really hurt him, and he’ll have no memory of them at all, but as a new mother, those pricks may as well have been pricks through my heart and I couldn’t help but cry as his screams pierced the delivery room. If it weren’t for my health condition, he’d have been left in peace to enjoy his first feed. It was my first taste of the guilt that comes with being a mother. I felt, however irrationally, as though I personally had hurt my child. My brand new baby.

Since then, diabetes has cropped up infrequently, yet persistently, in Thomas’s life. There have been times when I couldn’t feed him, no matter how imploringly he looked at me or how much he pulled at my top, rooted around or screamed at me, simply because my blood sugar was too low and I needed to sort myself out first. Likewise there have been occasions where I have had to leave him to cry in his cot because I wasn’t safe to pick him up and carry him down the stairs. It’s heart breaking to say no to your child when they want to play because your head is full of cotton wool and fingers tingle with numbness from a low blood sugar. Or when you head bangs a beat and your tongue is drier than the dessert for the opposite reasons. There are tear stains on the pages of one of Thomas’s books, from the time that I cried when the words swam in front of me and I knew I couldn’t read to him.

I know that, once again, Thomas is too young to remember these things. In the grand scheme of things, they won’t matter at all. He may look at me with an expression of confusion and hurt, and he may stick out his bottom lip, or even scream at me, but I know that ten minutes hence all with be forgiven with a cheeky grin and a big hug. And I also know that I sometimes I have to put myself and my health first in order to be the best parent for my child. Anyone who thinks that sounds selfish doesn’t live with chronic health issues, or more specifically, with diabetes.

But knowing those things in my rational brain doesn’t stop my heart from hurting each time diabetes edges in to a moment of motherhood. It doesn’t stop the omnipresent mothering guilt from eating away at me. Diabetes is an impossible beast to control perfectly all the time, but that doesn’t stop me pressuring myself to achieve the unachievable in order to give my son a childhood where diabetes does not feature at all.

If it’s an impossible dream, though, I want the only diabetes that affects Thomas to be mine. Not his own.

And no matter how strongly I feel the guilt about the impact of my health on my parenting or relationship with my son, it pales in comparison to the strength of my fear that one day Thomas may be dealing with this too. It’s a fear that on a day to day basis I fold up and squash deep down inside me, right next to the place where I lock away any hope of there one day being a cure. But from time to time it rises to the surface in a rolling boil that I can’t temper or tame.

It’s usually provoked by something that might a seem completely innocuous to other parents. Like the time I arrived to collect Thomas from nursery and his key worker mentioned “He hasn’t stopped drinking today”. A “normal” parent would probably put it down to a virus, a sore throat, to hot weather or the fact they hadn’t drunk much the day before. Immediately though, the fear is stalking me that this could be the beginning. The first time his nappy leaked in months and months, down to it being completely saturated in only a couple of hours, I didn’t care about the extra washing or change of clothes and I didn’t rush online to find out how I could better boost his cloth nappies to prevent future leaks. Instead I let the fear swallow me up.

So far, however, I haven’t acted on my fear. I haven’t pricked his heel, or toes, and tested his blood sugars. I haven’t pressed urine dipsticks in to his nappies to see whether there is any sugar lurking there. I’m determined to try to keep this in proportion. To remember with my head that the scientifically calculated risks and probabilities are on our side, even if that means nothing to my heart. Because if I spend his entire childhood watching him with fear haunting my gaze, that will be just as bad as actually living with diabetes.

A phrase that crops up a lot in parenting circles is “I don’t care, as long as they’re healthy”. It’s always said with the best of intentions, but as time has gone on I’ve realised how much I hate it. It often seems to imply that the speaker somehow wouldn’t be happy with their child if they weren’t healthy. I know it is not what is meant, since no one wants their child to be ill, or to live with a chronic health condition, but it’s what the phrase makes me think. I can tell you now, though, that one thing is for sure. If it happens, I’ll love my son just as much as I do today. And it will be my job to make sure that even if he is living with it, it still impacts his childhood as little as humanly possible.

That’s the best that I can do.

Dec 1 / Caro

Top Tips For A Diabetic Pregnancy

Plan – Going in to pregnancy with more than 3 months of folic acid behind me and an excellent A1c made the early weeks much less stressful for me than I think they may otherwise have been. Aside from being less worried about potential complications, I didn’t have the problem of trying to drastically adjust what I was doing in terms of diabetes control. I’d already built in lots of good habits, so was free to focus on responding to the changes caused by my new hormonal status. I hated the thought that diabetes could be the thing to stop us trying to conceive once we were ready, but getting everything stable before we started was absolutely worth it.

Sort your hospital care out carefully – This is something I didn’t really do, and I ended up changing hospitals during the first trimester, which made for a bumpier ride than was probably strictly necessary. Think about the logistics of travel to your hospital both for frequent appointments, but also when it comes to actually giving birth. If there is more than one option locally, find out both about the general maternity services, but also what sort of experience they have in managing pre-exisitng diabetes in pregnancy. Ideally, you want to already know your diabetes consultant and DSN, and have a good working relationship with them.

Get used to lots of appointments – It can seem overwhelming. It can seem annoying, especially if you have a full time job to factor in. But all the appointments are there to make sure both you and the baby are well looked after. Try not to view them as an inconvenience and enjoy the unparalleled access to information about your pregnancy. Many non-diabetic women will be bemoaning the fact that they see their midwives so rarely.

However, Don’t be afraid to question what you are told, or what is usual “policy” – A lot of the care for pregnant women with diabetes is based on “one size fits all” policies. It’s essential that you are an active participant in the process though. If something is being suggested make sure you ask why. Ask what the alternatives are and what the risks and benefits of different approaches are. You can’t give informed consent if you haven’t been fully informed. It is often policy to see women with diabetes every two weeks, but in the early weeks, this felt excessive to me, as I was travelling a long way to talk about excellent blood sugars that we could easily have discussed by email. Remember that it is your body and your pregnancy. No one can “tell you” what to do. But at the same time, be sensible and respect the advice and experience of your health care team.

Test, test, test, or better yet, use a CGM – Honestly, I don’t think I have ever tested my blood sugars quite as much as I did during my pregnancy, and I don’t think I could have coped without a CGM to tell me which direction I was heading in at ay given time. The only way to have any chance of keeping your blood sugars as close to normal as possible is to know roughly where they are as often as possible. Testing, and writing down the results, is absolutely essential. You also need to be prepared to act on those results too.

Try to eliminate the lows – When you have the risks of hyperglycaemia drummed I to you frequently, lows can suddenly seem like a friend. Whilst it’s true that mild hypoglycaemia pose no threat to your unborn baby, it can carry risks for you. Frequent lows can lead to loss of the warning signs, which in turn increases the risk of severe hypoglycaemia, which may in turn put your baby at risk. Bouncing back from lows is also a major contributor to high blood sugars and a lack of overall stability. Eliminate the lows and it becomes easier to remain steady. Honestly.

Carb count carefully – eyeballing, or scientific wild guessing are no longer acceptable. The only way you can dose accurately for the food you eat is to know exactly how much you are eating. That means that wherever possible you need to weigh and measure your food. And you need to read food labels.

Low carb can be your friend – Eating low carb is a sure fire way to reduce or eliminate post-prandial glucose spikes. Low or no carb foods are also fantastic when you are hungry at a less than ideal blood glucose level. But don’t go mad. I had ideas pre-pregnancy that I would stick to low carb, and a limited range of foods whose effects I knew, for most of the pregnancy. This isn’t necessary and will make your pregnancy seem to last a lifetime. There is also some evidence that restricting carbs too much can be bad for your unborn baby.

Superbolus is definitely your friend – Minimising the post meal spike is one of the most challenging aspects of good control. The superbolus is a pump technique whereby you take some of upcoming basal along with your pre-meal bolus, and then reduce your basal rate to prevent a later low. This is much more difficult if you are not on a pump, but taking a larger bolus and then eating some of the carbs much later on is also a rough approximation. Bolusing 30 minutes before eating, especially in the morning, also gives your insulin a head start to increase the likelihood of its action matching the absorption of your food.

Don’t panic about occasional highs – this is so much easier said than done. I remember having a full on, tear soaked and snot-ridden melt down the first time I had a high blood sugar. People will throw around all sorts of analogies that are cheesy, but true: the occasional visit to the sweet shop for your baby won’t do them ay harm. It’s a fact of diabetes that highs happen, and you won’t be able to eliminate every single one. Just do your best to minimise them – with frequent testing, accurate carb counting and regular adjustments. Look at the bigger picture when faced with a high number. Frequent and sustained highs are much more of a problem than occasional spikes. It’s also easy to focus on the highs, so writing down all your results can help you to see that they probably aren’t as frequent as you think.

Night times really matter – If you can get your night time basal insulin sorted to keep you steady and in range all night, this not only gives you almost a third of the day within target, but also gives you a good waking blood glucose level which starts the day off much better physically and psychologically than a high or low number. It’s worth making the effort to test overnight frequently. This gets easier in later pregnancy as sleep gets harder!

Get comfortable making adjustments yourself – If you are the sort of person who tends to rely on medical staff to make the bulk of the changes to your insulin regime, get ready to change. The adjustments needed in pregnancy are too frequent to wait between appointments, or for someone to keep calling you back. By all means seek advice as often as you need it, but get used to trusting your own instincts. You live your diabetes every day, so you really do know it best.

Remember that the old rules don’t always apply – Four will probably not be the floor, unless you have severe hypoglycaemic unawareness. 3.5 will suddenly become an acceptable fasting level. Correction doses are no longer reserved only for numbers above , or 10, or whatever you used to use. 6.5 is now a number you can and should correct. You no longer have to wait 3 days to see a pattern. It’s OK to make changes on the fly.

Don’t be afraid to ask for medication for morning sickness – even if it doesn’t seem “that bad”. The effect of morning sickness for women with diabetes is very different than for women without. Whilst there is no doubt it’s unpleasant for everybody, trying to deal with bolus insulin and not knowing whether your food will stay down is an extra challenge you don’t need. If morning sickness is interfering with your efforts for good control, then taking medication is the sensible option.

Don’t expect non-diabetes staff in hospital to have a clue about diabetes – Be prepared to be your own advocate. Be prepared to take care of your own needs possibly throughout labour if you want – but certainly during early labour or if you are admitted for induction. Take plenty of your own test strips and medication. Also take plenty of food and treatments for low blood sugars – don’t rely on the hospital to have what you need when you need it, no matter how shocking that sounds!

Remember to enjoy your pregnancy too – Remember that there is more to this than just blood glucose levels, carb counts and estimated fetal weights. Try to set aside the focus on diabetes at least some of the time and enjoy your changing body shape, shopping for your new addition and feeling them kick and move inside you. Remember that you are a mum-to-be, not just a medical machine.

Remember, it’s only 8 months of your life – By the time you find out you are pregnant, there are only eight months to go. The obsessional focus on everything diabetes is finite. And you have the biggest motivation you’ve ever had. Once the pregnancy is over and you have your child in your arms, it will all seem more than worth it.

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