Type one, Type Two and the Crossfit Furore

Over the past couple of days there has been a bit of a shit-storm on Twitter centred around the Crossfit account. At the heart of the furore was an image.

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This is many things. Without a doubt it was incredibly ill judged. It’s inaccurate at worst, vastly over simplistic at very best. It perpetuates stereotypes that do nothing to support any of us living with diabetes. It also has the potential to be offensive. But get this: it’s offensive to all people with diabetes, whether that is type 1 or type 2.

As Allison tweeted, poking fun at any chronic condition, at any type of diabetes, is simply not ok. The development of type 2 diabetes in particular is not as straight forward as even many in the type 1 camp would believe. But interestingly it was the type 1 community getting riled up.

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And this persisted, even when Crossfit clarified that they meant type 2. To be fair to Crossfit, the character limit on Twitter doesn’t always help these things. But as noted above, whether type one or type two shouldn’t matter. What we should have been attacking Crossfit for was their overall lack of courtesy and inconsideration and the fact that making jokes about anyone with a health is not a nice thing to do. And of course pointing out that the relationship between sugar and diabetes is very weak.

But this thing had legs. And looking at it from the outside it seemed that a lot of type ones were saying “It’s okay for you to make that joke just as long as you are clear that type 1 and type 2 are different things.” And that is not helpful at all. Because like it or not, all types of diabetes tend to be lumped together by those without intimate knowledge, and if you want to improve people’s understanding and perceptions of what we go through, we need to stick together. If type ones perpetuate the myths surrounding type two, we’re only harming ourselves in the long run. It’s not okay for Crossfit to perpetuate those myths, and it’s not okay for us to use the guise of  “defending our own interestes” to do it either.

There was a lot of misinterpretation, too. Quite a few tweets I read came from people who seemed to think that Crossfit were saying type 1 could turn in to type 2. Clearly that is impossible. We don’t need to re-hash the Halle Berry issue here. But what was being said about people with type 1 diabetes developing type 2 in addition is actually factually correct.

The development of clinical features of type 2 diabetes (insulin resistance and associated body composition factors) in people with type 1 diabetes has been recognised for well over twenty years. What you have to remember is that type 2 diabetes is not something for which there is a test that flashes up saying “Yes, you have it.” It is a collection of clinical features and a diagnosis made by the meeting of certain criteria. One of these is elevated blood glucose, which people with type one already have as a result of that condition. Another is insulin resistance, but that alone is not enough either. People with type 1 can have insulin resistance for other reasons. Women with Polycystic Ovarian Syndrome can have insulin resistance without having any type of diabetes. But if the other diagnostic criteria are also present in a person with pre-existing type 1, then it is reasonable to assume that even if the patient did not already have type 1, they would, at this point, have developed type 2. The widely used clinical term for this is “double diabetes”. It may be a horrible term, but it is scattered throughout the literature and defines the specific situation of having characteristics, beyond just insulin deficiency and resistance, of both types of diabetes.

I’m really not sure why so many type ones are offended by the statement of this fact. Or want to insist that it is not possible. That you can only have one or the other.

Consider the alternative scenario. Are you saying that it would be impossible for someone with type 2 diabetes (positive c-peptide, no auto-antibodies, so definitely not a misdiagnosis) to develop type 1? If they developed auto-immune destruction of beta cells (distinct from beta cell exhaustion common in long term insulin resistance) would you instantly say their type 2 had gone away? Yes, this scenario is unlikely, as type 1 would usually manifest first. But it illustrates the point that it is not – cannot be – impossible for the two conditions to co-exist.

I’m not defending Crossfit. As per my earlier paragraph, they are still guilty of perpetuating unhelpful stereotypes and misinformation. The heart of their original argument was that “sugar causes diabetes” and they chose to back this up by citing a couple of individual studies that show a correlation between consumption of sugary beverages and the development of diabetes. In actual fact, the evidence for the association, and certainly for causation, still appears rather weak. And there are so many confounding factors in diabetes. Thus, it will almost certainly never be as simple as saying that a single thing causes it, because it requires the perfect storm of factors to come together.

What is not helpful is to keep defending this stance using infographics culled from the internet that cite no sources. If you want people to listen to, and appreciate, your argument, you need to make sure that it is properly backed up. As a community, we do better when, instead of attacking those that spread misinformation, or poorly worded statements that imply untruths, we focus simply on spreading the correct information. Sugar does not “cause” diabetes, but healthy lifestyles can help to minimise the risks if you happen to be pre-disposed.

The bottom line, however, is that it is not okay to make jokes about any type of diabetes, or any other condition, be that cancer, mental health issues or physical disabilities. But that message to Crossfit was lost in a war between diabetes types and you can bet that is why the message is so often lost on the general public. By focusing on the distinction between types, all people have done is given Crossfit a way to try and argue back, as their consitent responses that they meant type 2 have shown.

What we should have been telling them loud and clear is that “Picking on people’s health vulnerabilities is an abhorrent thing to do.”

I for one would have liked to see them argue their way out of that one.

Because it it.

I don’t understand how anyone can argue with that. So as a type 1 diabetic, please make sure that you aren’t inadvertently doing it too.

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.

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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.

Talking to Thomas About Diabetes

I’ve read a few things from mothers with diabetes over the last couple of years about the conversations they’ve had with their kids about their condition. Some of these people have had much older children, capable of really understanding the ins and outs of diabetes, and from whom it would be almost impossible to hide the tell tale signs of living with it. Others have pre-school age kids, more like Thomas. And it is some of those whose kids astound me with how much they already seem to know.

I have a confession to make on that front. I’ve never, knowingly at least, used the word “diabetes” in front of my now three-and-a-quarter (the quarter’s important dontchaknow?!) year old son. And I’m pretty sure it’s not a word which is in his otherwise extensive vocabulary.

Obviously Thomas has seen my insulin pump, and asked what it is. He’s seen my testing kit, seen me using it and revelled in the fact that it churns out numbers – his second favourite thing after trains (yeah, I’m waaaay down on that list!) He’s seen me chugging Lucozade to treat a low and asked what it is, or what I’m doing. In every single one of these cases I’ve replied with the very generic “Mummy’s medicine”.

It’s an answer he happily accepts. He knows that he has medicine when he doesn’t feel well, but he also knows gets what he calls “medicine” every day in the form of vitamin syrup, so “medicine” doesn’t have purely negative connotations for him. And it’s not an outright lie. These are things that I’m doing, or taking, in order to keep myself healthy and ready for whatever Thomas needs from me.

I don’t really know *why* I haven’t told him more than that. Or, at least, it’s not simple to explain.

To say it’s because I don’t think he would understand would be doing him a massive disservice. He’s a bright boy and, more than that, a deeply empathetic and caring one too. It’s fair to say that I currently have no idea exactly how I would explain it to him, how much detail to include or what words to use, but that is as much because I haven’t given any thought as because it might be hard to do. I’m sure that I could come up with the words if I really wanted to.

I do wonder sometimes if it’s because I don’t want Thomas to regard me as I some way “broken”. Thomas sees me as his Mummy – an absolute, reliable constant. He knows that I give good hugs, always come when he needs me and can kiss almost any bump or scrape better. I don’t want anything to cloud that image.

It’s rather like how I felt back when I was a new mum and was witness to debates about post-pregnancy bodies and “snapping back in to shape”. Back then, I couldn’t actually have cared less how I looked because Thomas didn’t. All he cared about was my presence. All he wanted from my body was its warmth and security and milk – all of which he got in abundance. I want Thomas to go on not caring about my body and it’s workings, or lack thereof, just the person that I am to him. I could argue that I don’t want to do anything to jeopardise the perfection that Thomas sees in me even if I don’t see it myself, no matter how daft that may sound.

And of course, there is what other people might think of me to consider too. If Thomas were acutely aware of diabetes, I have no doubt at all that it would be a daily topic of conversation around the pre-school lunch table. Thomas can’t help but keep re-iterating to everyone there that his mummy wears glasses (and contact lenses). It’s just a fact about me that he’s fond of repeating. But what if I only wore lenses and I weren’t comfortable for everyone to know? And honestly, where diabetes is concerned, I don’t necessarily want everyone to know.

That may sound strange coming from someone who posts the intimate details of her life online (hello, not sharing my full name) and someone who is incredibly comfortable with impromptu advocacy and education sessions when the teachable moment arises. I guess I’m fine talking about it openly once people know, but the letting them know in the first place is awkward for me. I’m never sure how people might react and a lot of that relates to my profession and how people would regard me if they knew I had a laundry list of chronic health problems with diabetes right up there at the top. Chief amongst my faults is caring too much what people think of me, but once that information is out there, I can’t take it back, so I’m hesitant around those who don’t know.

And maybe it really is as simple as that. Maybe I’m just hesitant about letting my son know at all because it’s something I just find difficult to do even when the person in question loves me more unconditionally that anyone else in my world.

Maybe it’s just too hard.

Before I started writing this post, and I wondered to myself exactly what the reasoning was behind my reticence, it crossed my mind that I might be protecting him from a reality that he shouldn’t need to worry about yet. But at the same time I realised that Thomas is about to reach the very age I was when I was diagnosed, and it became not just an abstract idea, or something that applied to someone else, but my very own reality.

Perhaps it’s time to give my son the credit he is due, get over my hang ups and let him process the information in the way I’m very sure he is capable of doing. After all, it may be hard for me to share the story with him, but it must have been a whole lot harder for my parents to share it with me.

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Any tips on how to have conversations that you find hard with pre-school aged children will be gratefully received!

World Diabetes Day: Going Back To My Roots

Once upon a time I was, for want of a better term, a “diabetes blogger”. By which I mean I wrote a blog dedicated to diabetes – my experiences, my thoughts and my fears. It was a good way of venting my frustrations at a time when I was burned out with my chronic health conditions and, as cheesy as it sounds, it helped me to put things in perspective and opened the door to a support I’d not previously known.

The problem was, it was only a diabetes blog. I frequently felt constrained by its title and niche when I wanted to go completely off topic. My readership was almost entirely people with diabetes themselves, who I felt wouldn’t be interested in my more mundane rumblings, although I know this restriction was entirely self imposed. But what frustrated me most of all was that there was no way through my blog to reach out to people beyond the diabetes community. Much as I liked being able to offer support to other through the means of “me too” and “I understand” sometimes I felt like I was preaching to the choir. These were people who did absolutely already get it, who believed as passionately as I do that research in the condition needs to remain a priority, and that we need and deserve access to the best technology we can get.

Gradually my passion for “diabetes blogging” faded away. I suppose I wasn’t in a place where it was a priority in my life any more. And simply living my struggles was enough, without thinking them through in order to write and share them as well.

That said, when I started this blog, diabetes was still in my mind. Newly pregnant, diabetes understandably had to take a central role. And I was keen to write about pregnancy with pre-existing diabetes. The difference this time was that my posts didn’t only focus on diabetes, but on all the routine aspects of a first pregnancy, from excitement to fear and back again.

Once I became a mum, the diabetes side of my blog faded again. I guess that whilst I was working hard to ensure my diabetes didn’t impact on my son, or my ability to breast feed him and keep him safe, I wasn’t in the mood to think about it any more than I had to in order to achieve these things. Sure, I write about it sometimes – like last week – but now I worry that my readership won’t understand or be interested in my rambling on blood glucose levels and insulin pumps.

Today, however, is World Diabetes Day. And it’s time that I went back to my roots. It’s time to out in to practice what I wanted to all those years ago. To share what it really means to live with diabetes with an audience of people who mainly have absolutely no reason to know, understand or care.

WDD_logo_EN_200pxI’ve written before about how diabetes reports in the media swing between terrible desolation and tales of magnificent achievements made despite diabetes. In the former category are the tales of awful complications and their cost to the health service. Stories of people who’ve been affected by complications – stories which are always edited to make it seem as though the person has not looked after themselves, glossing over the fact that the risk of complications is lessened by good control but cannot be entirely eliminated. Yes, you can do everything right, and still suffer, because that’s the true nature of the disease. The latter category includes people climbing mountains or achieving sporting excellence. Nothing wrong with that, but we need to remember that just because a person doesn’t achieve big things with diabetes, it doesn’t mean they are a failure either.

And what all these stories miss is the vast majority of people with type 1 diabetes who are just living and getting on with it. Fitting it in to their careers, their families and their every day lives as best they can. What these stories also miss is whilst it’s true that diabetes doesn’t have to stop you doing almost anything that you want to do, it’s still really hard work.

Really hard work.

When people ask me what it takes to live well with diabetes, I still struggle to answer concisely, even after all these years. But here’s an idea.

It takes hard work. A lot of hard work. And it takes organisation, planning and attention to detail. Dedication and commitment. It takes the ability to be self critical without giving in to self loathing. It takes courage to keep trying, even when nothing seems to work. It takes strength to face the fear of what can go wrong, and determination to keep going in the face of its relentless presence.

Because it never goes away. Not at Christmas, or on birthdays. Not for a weekend. Not even for your wedding day or the day your child is born.

Living well with diabetes takes multiple daily finger pricks to test blood sugar levels. It takes counting of every carbohydrate you eat, whilst also considering fat and protein, and expected activity levels. It takes organisation of medical supplies and medical appointments. It takes ensuring that you’re never without access to glucose in case of low blood sugars. And of course, it takes injections. Or cannula insertions and the wearing of an insulin pump on your person at all times.

But contrary to popular belief, the needles are by no means the worst part of diabetes. I still hear people say “I could never inject myself every day.” And my response is still “You would, if the alternative were to die.”

Diabetes is like a beast that needs constant and careful attention in order to keep it subdued and quiet. And the more successful we are at juggling the multitude of factors that affect it – food, stress, exercise, hormones, illness, the weather – the easier people think it is. But often, the easier we’re making it look, the harder we are paddling under the surface.

 

All of this said, we’re still lucky.

Yes, a cure would be nice. Or at least a means of prevention, or reversal of the early disease, to spare the next generation a lifetime of managing this chronic condition. But we have access to, and sometimes take for granted, so much. The technology in insulin pumps and continuous glucose monitors has come on leaps and bounds in the last decade. We’re getting ever closer to automation of control, via artificial pancreas research.

Yet just 100 years ago, insulin had not yet been discovered and diabetes was still a death sentence.

And we’ve lucky because in some parts of the world, it still is.

Diabetes is hard work to live with, but I’m so grateful that I get to live at all. For too many people, insulin and the very basics needed to manage diabetes are still out of reach.

If nothing else, I urge you to consider that today.

Low

I didn’t know how I’d got where I found myself. Sitting on the edge of the bed in semi-darkness, the room pitching and rolling around me. I felt detached from body in so far as I couldn’t control it at all, but at the same time I felt completely imprisoned by the uncontrolled and uncoordinated movements I was involuntarily making.

Yet oddly, I didn’t feel scared.

I didn’t feel consciously aware of the fact that this was a low blood sugar. A really bad low blood sugar.

My awareness of the situation seemed to ramp up slowly, like the world coming back in to focus after a long sleep. I became aware of the sounds I was making. They were guttural sort of cries. The fact that they were coming from me took longer to assimilate. All of a sudden it seemed that my face felt sticky and my hair damp and matted. I became aware of Ian beside me trying to help me get Lucozade down my throat. He was asking me questions. I don’t think they were really directed at me, just a stream of consciousness. A verbalisation of the panic of what to do. Use the glucagon? Call an ambulance?

I still felt slightly numb, and detached from the situation. I knew that I hated this. It felt like it would never end. Yet I still wasn’t afraid that it would turn in to anything more. That it would get worse or end in a bad way. I was only existing moment to moment, incapable of true fear.

I knew I was trying to co-operate. I tried to drink, but the jerking of my body sent a spray of Lucozade across the wall. Another flew across the bed, hitting the pillow. More ran down my neck.

Then I was crying, the tears mixing with the sugar and sweat.

Crying always means that I’m coming back. The tears come long before coherent words.

My body seemed to come back in to my control with startling abruptness. The room came back in to focus. I was aware, for the first time, of my heart hammering out a crazy rhythm in my chest, just as it began to slow. I took a more co-ordinated drink of Lucozade.

I noticed the puddles of sugary liquid on the floor and the splatters across the bed. I saw the orange marks starkly contrasted on the cream walls. Marks that will bear testament to this low until we have time to repaint the wall.

I knew that I was coming out of it. And then, there on the road to normality, I finally felt afraid. Afraid for what might have happened. How it might have been different had I been alone. Where I might have gone had I slept on, instead of sitting up in bed and screaming out – the act which startled Ian awake and allowed him to take control.

I remember nothing of that. My memory is blank from the moment I went to sleep. Ian told me later that it had taken him more than ten minutes to get enough glucose in to me to bring me back from whatever place I’d been to. That diabetes had done this to him made my heart hurt.

The clock said 12.43am. I’d been asleep for a little over an hour. The blood glucose meter, when I finally tested said 1.9. I dread to think from what depths it had risen.

This was the worst low blood sugar I’ve had in years. It’s the worst Ian has ever seen. It’s certainly the only time he’s ever contemplated dialling 999.

I’ve spent the last four years in pursuit of the absolute best control of diabetes that I can manage. From trying to conceive Thomas, through pregnancy, then on to breast feeding and then trying to conceive again, I’ve not dared to let the ball drop. In some ways it’s ironic that the worst hypo of all has come after I’ve abandoned trying to be perfect, since it’s well known that tight control raises the risks for severe hypoglycaemia.

But then again, it’s pretty unsurprising. I dropped the ball. I stopped caring. And perhaps the decision to abandon CGM this past fortnight because I’m burned out wasn’t the smartest.

The first thing I did this morning, through post-hypoglycaemic hangover haze, was wash the Lucozade out of my hair. The second was to insert a new CGM sensor.

Diabetes smacked me down last night. Burned out or not, it’s still a beast that I can’t afford to turn my back on. Otherwise this is what it does.

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

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.