28. My Body Can…….grow a human

This is the talk I gave at TAD on Tour when it came to Oxford back on 20th June 2019.

Before I share my talk below, I would like to start by extending a huge Thank You to the other speakers, Amy Stevens & Quentin Valognes and our Compere Shivani Misra who all did an incredible job of showing their passions for changing the conversations around Type One Diabetes to make life better for us all. I would also like to thank Dr. Partha Kar and the rest of the team responsible for making TAD and subsequently, TAD on Tour come to life and for giving little old me the opportunity to speak about my experiences. Sam from Novo Nordisk, you did an amazing job of coordinating the week whilst also being on a cycling event across the UK. 

There were 4 events across the UK in total, if you head to twitter and search #TADonTour you’ll be able to see all the speakers and reactions.

Good Evening, Everyone, My Name is Niki and my life with Diabetes began when I was diagnosed with “just a touch” of it or Type 2 Diabetes in 2001 at the age of 20. We had a rocky beginning to our life together; eventually the “marriage counselling” came in the form of a severe DKA admission later that same year. I was then, for want of a better word, reclassified as “probably a type 1” and started on insulin injections. Naturally, that experience alone took its toll in ways in which it feels surreal and wonderful to say, “I’m sure you all understand”.  

I didn’t have much advice or reassurance from the Diabetes Team I was initially assigned to about the impact this condition would have on my life, on my future; let alone the future I’d dreamed of for myself. The one where I meet the man of my dreams, have babies and maybe find ourselves a home with a view of the Atlantic ocean, nestled in the Cornish Countryside, where I can write best-selling books whilst raising our children and of course enjoying the fare on offer from Pasties to anything that goes nicely with or can be made from clotted cream (but always jam first please and thank you). There were no conversations about being a young woman with Type 1 Diabetes, managing hormones, or the way a menstrual cycle can change your insulin requirements so drastically.

As a 21-year-old, I recall asking my Diabetes consultant about pregnancy after someone had told me “Diabetics have giant babies and they end up being very poorly so you probably can’t do that”. I asked the question from a very emotionally vulnerable place and whilst waiting for my possibly near retirement age consultant to respond, it was almost like being in a state of anticipated grief, I feared I was about to experience the first shattering of a dream I’d kept safe and close since playing with dolls as a child.

The response I got from this man was a dismissive “with an HbA1c like yours I wouldn’t even consider it”. For perspective, at this point, I was less than a year into my life with diabetes, had received no education and was navigating these tempestuous waters mostly alone. My only option at that time to get answers or education seemed to be library books or hearsay, basically the equivalent of asking Dr Google, and we all know what a risky move that can be.

Fast forward 15 years or so and I’m very much being cared for by a new Diabetes team and through working with them and being inspired by a dear friend, I’ve now connected with a community of other people living with different types of Diabetes. I’ve discovered the information available from Diabetes UK and JDRF; particularly around pregnancy and spoken to actual people who have had actual babies who weren’t giants and are healthy and exquisite and everything you want for a baby to be. And I’ve spoken to Mothers with the same condition as me, treating it with the same medications who grew those non-giant babies and are still here to tell the tale and are being the most amazing mothers to their children. I had some education, some emotional support, and a proper insulin to carb ratio which felt like a whole new version of the “normal” I’d once known but there was still a specific something I needed to know.

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My lovely Diabetes Clinic. Photo Credit Oxford BioBank

I hadn’t dared ask the question again over the prior 15 years, not properly anyway, I’d tuned out had the subject come up fearing I wouldn’t like what I would hear. It was my way of trying to keep hope safeguarding my dreams. Having built up a relationship with my team that was based on mutual appreciation; me for the study and dedication they have shown to be able to advise and guide me and them (as they constantly remind me) for my “putting all the hard work” into living as well as I can with T1D, I thought I’d give it another go. Like a child desperately wishing for a new puppy and scared that the answer from her parents will be an immovable no I braced myself and tentatively asked; “What should I be considering when thinking about pregnancy?” The very same question I had asked over a decade ago, thankfully the answer was not the same.

The answer spoke of preparation, of 5mg Folic acid, of it being hard work but worth it, the response spoke of the positive outcomes I had myself heard of through the Diabetes Community, it even included a “Does your partner know about this?” promptly met with, “he will when I meet him!” an exchange which made the entire experience more human, normal. I asked about the optimum pre-pregnancy A1c, at somewhere around 7% mine wasn’t that far out and I was reassured that this, paired with the way I manage my own Diabetes, wouldn’t be a massive hurdle if a pregnancy were to be imminently on the horizon and that the support to prepare was there when the time came. Knowing motherhood might be possible one day was like a big pat on the back for the hope I’d maintained.

In 2016, I met the man of my dreams (he’s actually better than the one I dreamed of but perhaps don’t tell him that), and in September 2017 we found out I was pregnant. My pregnancy wasn’t planned and the only preparation I’d done from a Diabetes perspective was to take the 5mg of folic acid because I’d been advised by a GP to take it for up to 6 months before trying for a baby, we’d originally decided to do that at the beginning of 2018; Moomin had other plans.

Knowing that I was pregnant made a huge difference to how I felt about the extreme variance in insulin resistance in comparison to the usual day to day with Diabetes. It was liberating to not have to play detective to work out the mystery reason for the unexpected high or the persistent low…. although of course there was still some occasional randomness to keep me on my toes. From the moment I found out I was expecting the Mumma Bear in me was born. Prior to pregnancy, I’d been a micromanager of my T1D anyway, now I had a much healthier obsession with it. Don’t get me wrong, it was exhausting but the little life inside of me was so motivating, it was hard to find reason to complain when I was so grateful.

I’d spent more time than I’ll ever admit to myself wondering if I’d be able to experience the things most expectant mothers do. I know it probably sounds daft but there were genuinely days where I had conversations with my T1D begging it not to make my pregnancy any different because of my lazy pancreas. I’d watched my sister, and friends enjoy their pregnancies with all the trimmings and it felt important to me that I was able to experience as much of that as possible. I felt it would balance out the need for closer monitoring, the additional appointments (although the extra scans were really quite a treat) and the way in which Moomin would come into this world.

In the First Trimester – Morning sickness. Hula hoops, apples, fish pie, and pasta were about the only things that were palatable. I couldn’t even drink tea to console myself. (I’m a BIG tea drinker). My insulin resistance was huge between weeks 5 and 11 and the only way I was able to have lunch without spiking ridiculously high was to have an increased basal set for the hour in which I had lunch, and the 30 minutes either side of it too. I would eat the same thing every day and I would pre-bolus by 1 hour and 15 minutes AT LEAST. I felt exhausted and elated and I struggled not to scream our news from the rooftops.

Some favourite moments from the first trimester for me were obviously the first few scans, I can’t describe the feeling of seeing your child growing inside you; needless to say, I fell more in love with each peek. Telling my family, we gave my dad a birthday card from Moomin and I can still remember the look on my Mum’s face when she worked it out as it was still sinking in for my Dad. Learning about the SUPERBOLUS…. seriously, it was like I’d been living under a rock! Returning to the place where Matt and I met, talking about bringing Moomin there one day and finding him on one knee offering up a lifetime together and ring that’d been months in the making. Realising that by the time I got to the end of this trimester, I’d kept Moomin alive and growing beautifully whilst finding ways to proactively manage the changing demands my T1D was throwing at me.

I can’t tell you whether it was knowing what I was doing (or rather feeling like I did) but I felt things ran a little smoother during the second trimester from a BG point of view. I was no longer feeling sick, although there were moments of nausea…. these were mostly when I tried to see if I could drink tea again yet. Because everyone knew, I didn’t have to say yes to a cup of tea, let it go cold and pretend that wasn’t intentional anymore. I can’t tell you how stressful that was, have I mentioned I’m a big tea drinker? Even having Christmas dinner at a hotel and guessing carbs went well, I really felt I had this Diabetes and pregnancy thing nailed. Moomin was growing steadily, right down the middle of the centiles and it’s the only time in Moomin’s life where average is a word I was thrilled to associate with our child.

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My undeniable highlight of trimester 2 was feeling Moomin move for the first time. As a family, there was 1 stand out rough day for us all, really rough, and it was this day that my darling let their presence be known. I was around 18 weeks and it felt like standing next to a really big speaker as the bass kicks in and you feel it as a physical sound… I hope that makes sense. Moomin was telling us all that everything was going to be OK.

The third trimester was a rollercoaster of so many things, and my BGs were no exception. For me, this trimester was more about being reactive because even though I couldn’t see them; my T1D was keeping me on my toes. It was an extreme version of every day with Type 1 Diabetes and at this point, I could do without it. I wanted to nest and do all the Mumma to be prep that our NCT friends were doing. Instead, I was adjusting basals and carb ratios, injecting Fragmin, watching the spread of an itchy pupps rash and I could barely move because my bump was huge and I was carrying quite low. I was consoled by seeing, as well as feeling Moomin move frequently, the gorgeous sunshine we were having helped too. Even from inside.

This trimester was when I appreciated the support I got from my team the most, we were approaching the really scary bit…the bit where the baby needs to come out somehow and once again the way in which I managed the varying insulin needs was going to have an impact on how well that went and above all, how Moomin was at birth. It was nice to know that the crippling fear I had about aspects of this were completely the same as most first time Mums. I was concerned about having to have an emergency C-section and there being a need for a general anesthetic. I didn’t want to miss those first precious moments of my baby’s life. What if I couldn’t drink tea again? What if the induction didn’t work? What if Matt wasn’t able to stay with me and missed the birth? Had I done enough to keep Moomin out of HDU?

At every antenatal clinic, the consultants and midwives would give me time to air any concerns or ask questions, and I presented my list and got all the reassurance and information I could ask for. I was taken through the induction process, I was assured that a C-Section under a general anesthetic is very rare and there is usually time for a spinal block if there’s no epidural in place. I should be able to drink tea as soon as Moomin arrived and Matt wouldn’t be sent away at any point once the induction process was started. Moomin had a good strong heartbeat, was growing nicely and giving no reason for concern, but there would be a wonderful team on hand who could take care of Moomin if that were needed. We talked about how my blood glucose would be managed throughout labour and decided that I would leave my insulin pump on for as long as possible and with the help of the Libre, which Matt could be in charge of, we’d all have a full picture with which to make decisions in situ.

By the end of that appointment, I knew the date I would be induced and I resigned myself to the mindset that no pregnancy, labour or indeed parenthood were predictable, anything could happen. Just as someone without Diabetes could have a 10lb baby, someone with Diabetes could go into labour naturally and early. There was so much more about the experience of pregnancy that was, put simply, “normal” that it felt empowering. As people living with any type of Diabetes, we often strive to emphasise that this doesn’t stop us doing most things that anybody can do. Pregnancy is and should be no different.

Induction didn’t work for me, and after 36 hours of my body trying to go into labour and a rather graphic hypo right before the epidural; Moomin arrived through the sunroof at 10.20pm on Tuesday 8thMay, 2018. As I had maintained throughout pregnancy, we were now the proud parents of a beautiful daughter.

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She weighed 7lb 8oz – not a giant.

She was healthy as an ox at birth and still is.

My Body definitely CAN do pregnancy!!

Nx

After being asked to speak at TAD5 (the one with all the covid cancellations), I went on to take this speech really seriously and fell pregnant with our Son. He was also born weighing 7lb 8oz.

Images are copyright of the Author and Oxford BioBank
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24. A little rant from a T1D Mum To Be…

“Hello! So is it a big baby then?”

I hadn’t seen this person since August last year, at which point I was probably about a week pregnant and didn’t know it, I’ve also got engaged since then and finally feel more settled living in a new town; yet this is the greeting I get. “Is it a big baby then?” not “Let’s see the ring” or “How’re you feeling?”, not even a comment on my lovely bump, which at 34 weeks I was really excited to show off in my new “party dress”.

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34 weeks pregnant

I don’t think I’d feel so irked if that was the only occasion that day it’d been said, or the only time during pregnancy I’d heard this myth being perpetuated by someone I then attempted to educate. However, if I’m being honest with myself, I’ve known since before I even met Matt that when the time came for me to become a Mumma, I’d have to “manage” hearing people’s thoughts on the giant baby I’ll give birth to because I have Type 1 Diabetes. What I hadn’t prepared myself for was how offensive I would find having that assumption thrown in my direction. I appreciate the people saying it often don’t know an awful lot about Type 1 Diabetes, and this is why I take a deep breath, bite my tongue and then attempt to help them understand. I, unfortunately, have to do that without trying to elicit an apology from those people for the feelings their comments stir up in me, which sometimes impact me massively.

This far too common misconception comes from the fact that many women with any type of Diabetes are often induced or have a C-Section between 37 and 38+6 weeks into their pregnancy. Historically the reason for this has been given as Fetal Macrosomia, which the Mayo Clinic describes as;

 “a newborn who’s significantly larger than average. A baby diagnosed with fetal macrosomia has a birth weight of more than 8 pounds, 13 ounces (4,000 grams), regardless of his or her gestational age”. 

And of course it is one of the potential risks women with any type of Diabetes faces when pregnant, it is also one of the primary risks that motivate us to achieve those blood glucose results that resemble a straighter line than that of someone without Diabetes, often before we even fall pregnant. It’s also one of the things that potentially scares us about becoming Mumma’s when we start planning a pregnancy, so there’s a lot of emotion tied up in the big baby misconception. The truth of the matter is, that whilst it is a risk women with Diabetes face when pregnant, it is one that doesn’t automatically apply. Many women with Diabetes, Type 1, in particular, have babies of an average size and weight, who grow consistently and steadily throughout pregnancy because we are equipped to manage our blood glucose to within an inch of its life. This is something I did prior to pregnancy and my micromanagement has stood me in very good stead for the demands pregnancy would place on my T1D. I won’t sugar coat it; it is hard work (and that’s coming from someone’s who hasn’t really changed their approach), pregnancy will throw variable insulin sensitivity, resistance and possibly some new hypo symptoms to name but a few; at you BUT that’s no different to T1D without pregnancy and it’s a little easier to work through those challenges when you know the most likely reason behind it. 

The risk of a big baby isn’t only confined to women with Diabetes, I know people that have had 10lb babies and there are no pancreatic failings within their lives. Just as I know women who’ve had to be induced or have a c-section before they reach full term because there are risks to them or their baby if they don’t do so. Ultimately pregnancy is an unpredictable time in our lives and we have no control over it – diabetes or no diabetes.

I want to touch very briefly on some of the other reasons for Mumma’s with Diabetes being advised to deliver before they reach full term, (because I appreciate too much detail isn’t for everyone, I will leave it up to you to look them up in more detail yourselves). Put simply; it’s down to maximising positive outcomes for Mumma and Bubba and among those include avoiding placental failure, shoulder dystocia and stillbirth, these are of course in addition to the usual risks any pregnant woman may face towards the end of her pregnancy.

So, why am I so offended when people assume I’m having a giant baby? The fact that I’m not is reason one; Moomin has a nice, steady, consistent growth right down the middle of

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I should probably know more about what those acronyms mean….

the centiles, (the only time in our child’s life Matt and I will concede to using the word “average” in relation to our exquisite little human), at our 32 week scan they estimated Moomin to weigh around 4lbs – hardly giant. For me though, the more emotive reason I feel offended is because of all the hard work that has gone into keeping my baby safe and as unaffected by my Type 1 Diabetes as possible. The tears I’ve cried through the days of massive insulin resistance fearing my high BGs would impair my darlings development, the relief I’ve felt when putting even harder work and persistence into bringing those BGs down finally pays off. To summarise, to me when someone talks about me having a big baby it feels as if I’m being accused of not doing my absolute best for my child. I know I have been, I know I still am and I know I will continue to do so for as long as there is breath in my body. I also know the people saying these things say them from a place of misunderstanding and that needs to change within society at large.

I’ll keep chipping away at that where I can and I hope you’ll all join me in helping to dispel some myths and increase awareness when you have the opportunity.

In the meantime Thanks for reading my little rant.

Nx

 

 

 

Images are copyright of the Author and courtesy of Google Images.

 

 

 

 

Is the Third Time a Charm?

When I found out I was pregnant again, so much had changed since the last time that I felt a little unsure of what to do next. We had moved, I was now also living with another autoimmune disease which had triggered a physical change in me including a massive increase in my weight. I felt out of my comfort zone and whilst excited and fortunate beyond words to be adding another tiny human to the clan, I was anxious in a way I’d never felt before.

Where we live now there’s an online self referral form when you find out you’re expecting. This seems to go to a central team who then allocate you to a community midwife and who should refer you to appropriate consultant led care if the information is there to begin with, which of course mine was. I should have received an appointment from the Diabetes team (who were not MY usual diabetes team) at the local hospital much sooner than the 8 weeks it took. (I found out I was pregnant really early, like just over a week after conception early). The only indication I’d had from the central team that I’d need consultant led care was a letter stating that because my BMI was high, I was considered high risk and would need to be under consultant led care at the complex pregnancy clinic (I really don’t like that name btw)! By this point, I’d already had a telephone booking in appointment and had asked for the appropriate referrals to be made as my husband and I had decided to give the new area a go, rather than travel the almost 2 hours back and forth to Oxford for appointments. That feels like such a huge mistake now with the power of hindsight.

After what seemed like a labyrinth of admin teams, I eventually had an appointment through, a telephone appointment! For someone they’d never met and who was new to their service, and had already had her anxiety increased by their lacklustre performance, a telephone appointment! OK, I thought, we’ll roll with it and hopefully it’ll be fine, if all else fails I’ll ask if Oxford will have me back. The day of the appointment came around and having felt so empowered by both of the community midwives I’d encountered so far, I actually felt excited to virtually meet the new team. I would have 2 calls, one with an obstetrician and one with a diabetes specialist nurse and consultant. For those who follow me on instagram, you may recall the tearful and distressed insta stories back in the summer, the tale of the horrific experience; well that was this day!

In a phone call lasting 12 minutes, the obstetrician unnecessarily mentioned my BMI over 8 times that I counted, there was no clinical reason for it AT ALL to be mentioned so frequently. She was not receptive to my desire to talk about the possibility of a VBAC and to not make any firm decisions so early in the pregnancy about mode of birth, or the reasons why that was important to me, in fact she told me all of the worse case scenarios in horrifically, and unrequested graphic detail, without acknowledging that these are risks, not givens. This obstetrician, looked at a series of numbers on a page and made a judgement about me which was unwarranted and downright dangerous. As a healthcare professional, I was shocked that amongst her thought processes she had not considered the facts that A) I was diagnosed with Hashimoto’s Thyroiditis around 6 months previously, a symptom of which is weight gain! B) She had not accounted for the fact that the majority of people living with Type 1 Diabetes also live with many mental and emotional burdens, one of which is a difficult relationship with food, which can trigger eating disorders or periods of disordered eating. I was certainly triggered after the phonecall and found myself feeling judged, it felt like she was telling me I shouldn’t be having a baby because I wasn’t a decent enough human being, but a broken one who would inflict danger upon my unborn child and would likely never meet it because I would probably die in childbirth if I didn’t agree to another c-section just because she said so. I have been very open about my mental health and body image struggles both publicly and with my HCPs, it is clearly on the records from my booking in appointment and would have been available for the obstetrician to see. Her behaviour towards me devastated me, but this was just the beginning, the diabetes call was yet to come….

Just over an hour later, my phone rang again. I wiped away my tears, took a deep breath and naively thought this will be different. I thought that most diabetes teams now know about the importance of Language Matters and the principles behind it, use it in their everyday practice and understand the benefits of a person first consultation…. Oh my goodness how wrong I was!! Again, with hindsight I ask myself if I was a fool to expect more given the experience I’d had within the last 90 minutes? The eternally hopeful optimist in me says no, because if I’d answered the phone believing that then the conversation which followed would have been worse….and my fault. I don’t know where to begin with this one. I’ll start by acknowledging my privilege that Oxford are, in my honest opinion an incredible team. They know me, they know my diabetes and they have already supported me through 2 very wonderful pregnancies and into parenthood. They are patient led in my experience and have genuine care for the impact they can make and the part they play in “The Team”. My diabetes consultant during pregnancy also happens to be one of the co-authors on the NHS Language Matters document and has given me opportunities to speak about my experiences with SpRs and beyond. I wish everyone could have the experiences I have with Oxford because it’s honestly so empowering, and on those rare occasions when it’s not been as I’d hoped, they’ve been open to the feedback and what would work better for me. I know how absolutely privileged I am, I really do.

So, to begin my very first encounter with the Diabetes Specialist Team with questions along the lines of, “You’re a type 1 diabetic, what’s your control like?”. “Do you take insulin for your diabetes?”, “Do you know the sick day rules?”, “Have you been checking for ketones when you’re over 10mmol?” and “Why haven’t your sugars been within 3.8 to 5mmol consistently in the last 2 weeks?”. For a start, don’t call me a diabetic because that’s a sure fire way to get me on the back foot, especially when phrased like that!! You’re unlikely to ever hear me refer to “my sugars”, I find it’s misleading especially in a world where PLWD are still trying to explain we can eat sugar and it is infact carbs we need to monitor. The word “control” implies that Diabetes is something that can be controlled, tamed, not a burden if you put the effort in. Theres an implication with the world control that just doesn’t apply to life with T1D, which is why I talk about management. Do I know the sick day rules…by this point I felt like I was teaching a language matters seminar! Do I know the sick day rules, I’ve already told you I’ve lived with T1D for almost 22 years and you can see I’m over 40 with 2 autoimmune conditions, if I didn’t know the sick day rules would I be talking to you on the phone about my 3rd pregnancy?????? It was just disastrous, and on top of that came the realisation that I’d probably spend more time during this pregnancy introducing my diabetes to people than I would actually getting the support I needed. I also didn’t want to feel like a broken record, my usual tactic when it comes to introducing my language preferences around my diabetes is to repeat what they’ve said using my preferred terms, so “You’re diabetic” gets “Yes, I live with Type 1 Diabetes” and so on and so forth. I feel it’s a less confrontational way of doing things but also gives examples of how to employ Language Matters within conversations. I could of course, and I have, signpost to the Language Matters document, but you also can’t beat real life experience, although this was not how I wanted to spend my pregnancy. The consultant then insisted he wanted me to attend weekly face to face clinics, which wouldn’t work for me given the childcare needs and my husbands working pattern, especially when you can’t take your children into clinic with you. Weekly also felt really excessive to me, not to be boastful, but this wasn’t my first rodeo and I’d picked up a few things on the previous rides, including how to ask for help if I needed it between appointments. I tried to explain my thoughts on this to the consultant, but he was having none of it, then it was like speaking to the obstetrician again; “because you’re a geriatric mother with a high BMI and you’re diabetic we need to see you or at least speak to you weekly and we need to see your cgm traces so we can call you if you go high”. I could feel a rage about to erupt in me and I’ve no idea how I managed this, through gritted teeth I simply repeated that I would not be able to attend face to face appointments weekly, the reason why and also explaining that I have lived with T1D for 22 years, have had 2 healthy and successful pregnancies and at this point in my 3rd pregnancy, I did not feel out of my comfort zone, but if they could ensure I have contact details then I would be in touch the minute I needed their help. I also promised (with fingers crossed behind my back) to accept their invitation to share my CGM with them. It worked this time, we made an appointment for the future and I thought to myself “just need to say bye and hang up and then I can let this rage out”. Nope, the DSN wanted to repeat some of the questions the consultant had asked! I don’t think I’ve ever been aware of my blood pressure rising before, but thank god for Felix waking up from his nap at this point because I simply said “Sorry, my son needs me. Bye” and honestly I don’t think I’ve ever appreciated the connection with another human being as much I did the one I have with my little dude in that moment. I had never felt so judged or disconnected with HCPS, well not since my late teens/early 20’s, I felt unequal and that’s not the way a team works, it’s certainly not the way the team I have at Oxford work and it sat so uncomfortably with me that I spent the remainder of the day in a really unpleasant state of distress.

The impact of this didn’t just mean I sent an email to my community midwife and Oxford stating I wished to transfer my consultant led care back there, but it has left me with a lingering anxiety that has grown throughout my pregnancy. I’ve always known that pregnancy and Type 1 Diabetes carry higher risk factors, and I’ve spent a lot of time reassuring myself through research and peer conversations that those risk factors were not forgone conclusions. In my early years living with T1D the thought of not being able to become a mother was pretty much the first thing I questioned, I didn’t get reassurance from the retirement age male consultants I saw, no information about the connection between female hormones and cycles on my BGs; in fact one man told me not to even think about getting pregnant with an HBA1C like mine – I don’t think I was even a year into my diagnosis at that point, I certainly hadn’t had any education. I’ve spent time advocating for better conversations around pregnancy and diabetes, and I feel I’ve spent even more time trying to dispel the stereotypes; the giant baby, the highly medicalised labour and birth as the only option, a pregnancy devoid of “normality” and the joy every expectant parent deserves to feel… and here I am, fearing worst case scenarios because of the carelessness of language used by HCPs who didn’t take the time to get to know me and put my experience at the forefront of their assessments and the support they offer. I maintain throughout any peer support I give, that building the right team of HCPs around you when you’re living with Diabetes, and even more so when experiencing pregnancy and then parenthood is as important as the right tools for managing your BGs. I respect the decision my HCPs have made to specialise and study Diabetes, the time they spend keeping abreast of latest research, various technologies and how they acknowledge the impact living day to day with Diabetes has. They in turn respect the hard work I put in and the experience I have within MY diabetes, it is an opportunity to learn from each other and find ways to work together towards the same outcome; me living well emotionally and physically, with T1D.

So where am I now? I’m almost at the end of my pregnancy, I have had the conversations about why I came into this pregnancy wanting a VBAC and during those had the opportunity to explain that in fact, the mode of birth wasn’t the concern for me. I had no aspirations of birthing in a lilly pond with floating candles with a view of a desert sunset mural and a carefully curated soundtrack playing in the background. I began with my recovery (if you can call them that) from my previous 2 c-sections and made it clear that I cannot repeat those experiences for the sake of Tabitha, Felix and Matt. Bingo! That was the issue. This enabled me to lead conversations about a better recovery plan and fortunately, the team at Oxford have been supportive and understanding. They’re monitoring my anxieties and doing their utmost to reassure and collaborate on a recovery plan whilst I’m in hospital alongside working out the support I might need when I get home as well as in the run up to the birth of Flump. We have agreed a c-section is the safest option given my history (failed induction became an emergency c-section, then a planned c-section during a pandemic..) but also for us it means we can be practical about things and make arrangements for the Best Big Sister in the world and the Little Big Brother to be, who has obviously learned from the best. I won’t lie, knowing the date (no, I’m not sharing it far and wide, I like to maintain some mystery) does put a bit of pressure on the To Do list, and both Matt and I feel unprepared in ways but the practicality of it is a bit of a perk.

The pregnancy itself has felt harder at points, we moved home in spring last year and there has been lots of stress in trying to get things done in the house. I won’t bore you with the details, but although we’re very settled here we’ve not really finished unpacking and there is an ongoing legal situation with a contractor. Our daughter started school and then we hit Xmas – no one tells you how many social events there are at school in the run up to Christmas, it should definitely be in the prospectus! Our son started nursery and has overcome much of his separation anxiety, but I’ve missed him. All this has meant that my BGs have had cortisol to contend with on top of the multitude of other challenges faced when managing BGL’s whilst pregnant. I’ve always been reactive and worked hard to maintain my Time in Range, but I have to admit to not having as much time or mental space at points to give it the focus I could in my first pregnancy. But, Flump is incredibly active and so far seems to be following the same growth trajectory as their brother and sister and I guess now it’s just a matter of time before I find out if I’ve done enough to minimise or even negate all those risks the team I’m no longer with, made so prominent in their consultations. I know I’ve put the effort in, I’ve been on the same page as my team with things that need tweaking at pretty much every appointment and perhaps it’s not that I’ve lacked time or mental space, but that maybe, after 2 pregnancies I know more about my body, my diabetes and my baby’s needs than I give myself credit for….

In short, so far the third time hasn’t felt very charming at points, but I do feel a great deal of privilege to be doing this again, to feel empowered by knowledge and experience and to have built a great support team from antenatal to postpartum, including physio and infant feeding, and maybe that’s the charm of it…

See you all on the other side…..we may even have a name for this baby by then!

Nxx

35. The One Where They’ve Been Married For 6 Months.

A whole SIX months has passed since our wedding day, and I’m very aware that I haven’t shared an awful lot about it as publicly as I, and possibly you thought I would.

Truth be told, we hadn’t factored in how busy getting married so close to Christmas, as parents of a toddler, we’d find ourselves. Not to mention being in the early stages of a second pregnancy with Type 1 Diabetes…but that’s a story for another time.

There are a lot of things to be said about weddings, the work that goes into them, the emotions, the politics, the people and then that final count down….and then before you know it, the day itself. There is so much that I think we’d both change about our entire wedding experience looking back if we’re totally honest, the highs were epic, but the lows…..leave us speechless, and not in a good way. But, when I truly take stock of the day, about OUR day, mine and Matt’s; the outcome is one I feel I’ve waited for my whole life without really knowing it. I got to marry my best friend and I wouldn’t change that for all the tea in the world!

I remember feeling so calm and excited the morning of 30th November 2019, more than anything I just couldn’t wait to see Matt. We haven’t really spent much time apart since we’ve been together, infact I can count on less than 2 hands the amount of nights we’ve spent apart in 3 years; so to have been away from him the night before only added to that yearning and excitement, I missed him so so much, a feeling I’m not sure I’d prepared for. (His stag do was also really hard, I don’t think the planners had factored in the small child and her Mumma who’d want regular contact – but what a welcome home we gave him)! I couldn’t wait to see him in his suit, arriving in an Aston Martin (a surprise I’d been working on for over a year) and then to see him waiting for me at the end of the aisle, where we would officially begin the next part of our forever.

I remember breathlessly speaking to the registrars before the ceremony because I was just so excited to get to Matt, everything felt like it was going too slow, yet also quite fast. The adrenalin was absolutely having an effect. After seeing the registrars, our wedding coordinator, Janet walked me back down to my family and I kept asking her if she’d seen Matt and how was he. Once we reunited with my parents, sister, niece and our precious daughter, I felt able to take a breath. I was still excited but also overwhelmed, I’d been planning this wedding for almost 2 years and this was it…..there were only a matter of metres between me and the library and suddenly I wanted time to slow down for a moment, I wanted to drink it all in, the ups and downs, the emotions, the hard work and the sheer joy. I wanted the universe to know that as much as I’d hated so many aspects of wedding planning; I was grateful that it had brought me to this point. I looked at my parents, my Mum looked absolutely stunning and my Daddy so handsome, then I turned to my sister, niece and daughter and I felt so proud to be standing amongst them. Each one of these people had taught me more than I could ever acknowledge about love, friendship and hope….! I took a deep breath and off we went.

The ceremony is definitely my favourite part of our wedding day. I’ll admit to a flurry of emotions as the doors opened and I watched (from where I couldn’t be seen) as my mum walked through the doors, Tabitha’s hand in hers and then hearing the titter of laughter as Tabitha turned to come back towards me before finally heading off down the aisle, followed by my sister and my niece. Standing there waiting, my arm entwined in my Daddy’s, a small tear appeared followed swiftly by the offer of a hanky from my Pop – you may be thinking “good ol dad, prepared for the tears”, I can almost guarantee that hanky was originally intended for him.

Then it was my turn, our wonderful wedding coordinator made sure my train was in place and my dad was raring to go like he couldn’t wait to hand me over, I had to pull him back! We approached the doorway to the library at Ettington Park Hotel and I finally saw Matt, I wanted to just stop for a moment and take it all in, how handsome he looked, his reaction to seeing me and to see each one of our friends and family, there to support us on this long awaited journey.

The processional music was Transformation by the cinematic orchestra, a piece I’m listening to now as I write this and it takes me back there every time (except now baby number 2 is dancing away to it in my tummy). Much like the now faded butterfly on my arm, this was another transformation in my life and other than giving me goosebumps, the music stirred something in me the same way permanently inking a purple butterfly on my arm at the age of 16 did – I was fully committed and I couldn’t wait for where this moment would lead me. I look at the photos of me walking down the aisle, and where once upon a time I’d see chins and be incredibly critical of myself, I now see only joy and love as I look at the man who was about to become my husband. It wasn’t a long aisle, but that walk was incredibly emotional in the most wonderfully indescribable way, to the point I almost wish the walk had been longer. I was proud (and grateful beyond words) that my Dad was able to walk me down the aisle and I couldn’t wait to share my promises with Matt in front of some of the most important people in our world.

There were some giggles, especially when Tabitha decided to climb under the lace overlay of my dress, I’m so disappointed a photo of that moment doesn’t exist, but it’s a moment we’ll never forget. Tears and nerves as we both read our self penned promises; and surprise at some of the similarities. The gratitude and pride when my brother in law read Edward Monkton’s A Lovely Love Story so well (I had no doubts). It was all real and heartfelt and thoughtful and celebratory and despite there being a room full of people, I was only aware of Matt and I and it felt so intimate, something just for us, the best way to begin our forever.

Now we’re six months into married life and I don’t think either of us have felt we’ve had time for that “honeymoon” period many newlyweds talk about. Life with children gives you different demands on your time, perhaps if we’d met when we were younger we’d have been for more date nights since the wedding, or even perhaps gone on our honeymoon straight away? But if we’d met when we were younger our life wouldn’t be what it is now, one full of love, joy, rewarded and continued hope and the promise of possibility. We get to look forward to our honeymoon and the adventures we can share with our children, and just with each other as we tick off the moons lighting our sky.

Happy 6 Months My Darling Hubby……xXxXx

All Images Copyright of the Author

34. The Happily Ever After…

When people tell you how quickly your wedding day whooshes by, you never believe them. But before I knew it, the DJ was playing the last song and I was running from a conversation by the toilets to squeeze in one last dance with my husband before the lights came up and the night came to an end.

It was a spectacular whirlwind of a day, and if I’m honest I’m still piecing bits of it together. Trying to work out where pockets of time went and why I didn’t get to spend as much of it celebrating with my husband as I’d of liked. At first I blamed diabetes: it took a while for me to get into range with the excitement of the day, then there were the drinks and the fact that I had to bolus with correction doses at times (when the canapés arrive and your handset is nowhere in sight, you’re fine going for that ‘after bolus’ right?). But, in the end, my T1D really didn’t take up much time at all. A few people did tell me to get off my phone when I was checking my BGs or bolusing – it was fun seeing their surprise when they realised it was part of my diabetes management.

Something I will never forget from the day, is hearing my Mum’s speech, where she spoke about my diabetes and all the wonderful gifts it’s brought into my life. Looking around the room and seeing friends I’ve made through the diabetes community as she said all of this meant so much to me. I can’t deny that I was also a little shocked to discover my Mum reads my blog…

Our wedding day was so much of what we wanted it to be: people were chatting, laughing, dancing and celebrating. The atmosphere was filled with love and happiness and I hope everyone who came, took a little of that home with them. But the day was so much more than that for Matt and I: not just the day we became Man and Wife, but the day we got to show all of our friends and family how happy we make each other, how committed we are to each other and how unequivocally in love we are. The road to the wedding hasn’t always been the easiest, but Matt and I have gotten over the bumps together, stronger, more appreciative of each other and definitely more in love… and I didn’t think I could love him more than I already do.

 

 

I’ll finish with an excerpt from my speech;

“Matt, thank you for handling my heart like it’s the FA cup. I promise to cherish yours like it’s a good cup of tea”

 

Nx

 

DISCALAIMER: THIS IS A SERIES OF BLOGS I WILL BE WRITING ABOUT KALEIDO. IN THE INTEREST OF BEING OPEN AND TRANSPARENT I WANTED TO SHARE WITH YOU ALL THAT I’M EXCITED TO HAVE BECOME A KALEIDOER. THIS MEANS I AM FORTUNATE ENOUGH TO GET TO TRIAL THE KALEIDO INSULIN PUMP. WHEN THEY ANNOUNCED THEIR UK RELEASE WAS IMMINENT, KALEIDO ASKED FOR KALEIDOERS AND HAVING BEEN KEEPING A CLOSE (AND VERY INTERESTED) EYE ON THEM FOR SOME TIME, I GOT IN TOUCH. I FEEL REALLY LUCKY THAT THEY’RE ALSO LETTING ME USE THEIR PLATFORM TO SHARE MY EXPERIENCES OF LIVING WITH T1D WHILST PREPARING FOR MY WEDDING DAY. THESE BLOGS WILL BE SHARED ON MY OWN SITE ALSO.
IF YOU HAVE ANY QUESTIONS, PLEASE FEEL FREE TO DM ME.

All images copyright Author

 

33. Preparing For The Wedding

Well here we are, the wedding is so close now the excitement around us is palpable. I’m not sure I’ve allowed the excitement to set in yet, there’s still so much left to do that I almost forget how much I’ve prepared.

There have been so many things to consider over the last 2 years of planning that actually factoring in things to make my diabetes management easier on the day has fallen into general wedding category rather than being something set apart. I like thinking of it like that I suppose, my T1D is part of me after all so treating it the same way I have my dress or my hair makes sense.

The first thing I arranged was how to literally manage my T1D on the day and from a technology point of view, my Kaleido pump has been my saviour. I can’t imagine an easier way for me to ensure insulin delivery and manage varying basal needs in a wedding dress. In the run-up to the big day though, I’ve found myself being very aware of which sites I use, sometimes I bruise or the residue from the hook and loop patches takes a while to wash away so any visible sites have been off-limits. I’ve also wanted to avoid my legs, my planned wedding day sites to avoid causing lypos or anything else that could impact insulin absorption. I’ve also timed my set changes to make sure I’m wearing my turquoise pump on the day…something blue is tradition, right?

When it came to planning the menu for the day, I thought about ways we could make sure I was able to guesstimate as closely as possible for all the delicious food we were selecting, I think at one point I googled pocket scales thinking that would be the way forward, then I realised we could work more closely with the chef. We had a few meetings and conversations with the event team and then I asked if the chef could come along to our final details meeting, the same chef that when we had our menu tasting earlier in the year, had sent each of my courses up with a message telling me how much the carbohydrate count of each course weighed, enabling me to work out my insulin requirements. It felt emotional to meet him in person, I think anyone with T1D gets quite used to the terrifying need to guesstimate for meals we haven’t prepared ourselves. So it’ll come as no surprise that I literally cried when he said it wouldn’t be a problem to work out the carb content for each dish. I’ve reviewed the carbs and they all look in order and I’m so pleased I asked the question.

We’ve also thought about hypo management, not just for me, we have some incredible friends from the Diabetes community joining us, so behind the bar will be 150ml cans of coke for those moments the dancing gets the better of our BGs.

My final prep has been to have a good chat with my diabetes team about ways to manage my BGs on our wedding day. I usually set myself quite a tight target range so their first piece of advice was to relax this a bit, so I’ve changed this across all of my devices. The next piece of advice was to have someone keep an eye out for any signs I might be high or low, someone who knows me and the signs and can help me with this task without feeling like I’m being babied. And lastly, as my team sent me off with best wishes for a forever of happiness, they reminded me to just enjoy the day… and send pictures!

Nx

 

DISCALAIMER:: THIS IS A SERIES OF BLOGS I WILL BE WRITING ABOUT KALEIDO. IN THE INTEREST OF BEING OPEN AND TRANSPARENT I WANTED TO SHARE WITH YOU ALL THAT I’M EXCITED TO HAVE BECOME A KALEIDOER. THIS MEANS I AM FORTUNATE ENOUGH TO GET TO TRIAL THE KALEIDO INSULIN PUMP. WHEN THEY ANNOUNCED THEIR UK RELEASE WAS IMMINENT, KALEIDO ASKED FOR KALEIDOERS AND HAVING BEEN KEEPING A CLOSE (AND VERY INTERESTED) EYE ON THEM FOR SOME TIME, I GOT IN TOUCH. I FEEL REALLY LUCKY THAT THEY’RE ALSO LETTING ME USE THEIR PLATFORM TO SHARE MY EXPERIENCES OF LIVING WITH T1D WHILST PREPARING FOR MY WEDDING DAY. THESE BLOGS WILL BE SHARED ON MY OWN SITE ALSO.
IF YOU HAVE ANY QUESTIONS, PLEASE FEEL FREE TO DM ME.

All images copyright Author and Ettington Park Hotel

32. Body Image and Wedding Dress Shopping

So let’s talk about the dress in more detail shall we? Whoa, not that much detail, I still want to surprise Matt when I walk down the aisle. No, I want to talk about all of those body niggles and worries that every bride to be experiences. You know, the ones that lead to the majority of brides feeling like they have to go on a diet or extreme workout plan ahead of their wedding? I get it, it’s the day when you’re photographed the most in your entire life and you want to look back and see the image you have in your head in your photos, but what happens when you feel you have barriers to doing that?

 

My own personal relationship with my body image is chequered at the best of times and in the run up to wedding dress shopping it took a real nosedive, the reason behind this was definitely related to T1D. 

 

How would I wear my pump on the day? How would I access my insulin pump? How would I manage my diabetes? Could I manage to lose weight before the final dress fitting? Could I get back into being more active ahead of the wedding?

 

The last 2 were big ones for me, and probably the real reason why my body image nosedived. I realised I was chasing an ideal of other peoples perception of perfection and that was so unhealthy. After all, Matt proposed to me as I am so who would I really be losing weight for? Did I honestly want to look at wedding pictures and see someone I wasn’t familiar with? I spent more time than I should of thinking about this and made some decisions that helped me get to the wedding dress shop to find my dress.

 

1. I stopped looking at pictures of dresses in magazines
2. I stopped watching Say Yes to The Dress
3. I decided to choose my dress without allowing my pump to be a barrier
4. I spoke to my diabetes team about using a different insulin pump for my wedding
5. I wouldn’t choose a dress with the mind set “It’ll look better when I’ve lost some weight”

 

So, I fell in love with a dress and I brought it almost a year ahead of my wedding date. I then needed to find a solution for my diabetes management on the wedding day and I was fortunate enough that Kaleido became a very real possibility for me. That first day, and pretty much every day since has seen me more invested in being more active, because I have so little baggage and don’t have to worry about what to wear to accommodate my pump. The temporary basal function is so easy to find and use that I’ve rarely forgotten to use it ahead of a walk or a swim. It’s all been so natural, I guess that’s what happens when you get to cut the literal ties that were binding you.

 

My first dress fitting came around a week after starting with Kaleido and I didn’t even think about having tech attached to me, a very different experience to buying my dress., where I needed to detach my pump. I also realised that I hadn’t spent a year worrying about my weight or starting an extreme workout plan that would take time away from my daughter and fiancé. Instead I’ve spent that year planning a wedding, making sure my diabetes management is catered for in a way that will enable me to just enjoy our wedding day and most importantly, I’ve learned to feel more at peace with the body I’m in. It’s mine, it’s not perfect, it may not be the prettiest, but it houses a person who loves and is very loved. What could matter more?

DISCLAIMER:
THIS IS A SERIES OF BLOGS I WILL BE WRITING ABOUT KALEIDO. IN THE INTEREST OF BEING OPEN AND TRANSPARENT I WANTED TO SHARE WITH YOU ALL THAT I’M EXCITED TO HAVE BECOME A KALEIDOER. THIS MEANS I AM FORTUNATE ENOUGH TO GET TO TRIAL THE KALEIDO INSULIN PUMP. WHEN THEY ANNOUNCED THEIR UK RELEASE WAS IMMINENT, KALEIDO ASKED FOR KALEIDOERS AND HAVING BEEN KEEPING A CLOSE (AND VERY INTERESTED) EYE ON THEM FOR SOME TIME, I GOT IN TOUCH. I FEEL REALLY LUCKY THAT THEY’RE ALSO LETTING ME USE THEIR PLATFORM TO SHARE MY EXPERIENCES OF LIVING WITH T1D WHILST PREPARING FOR MY WEDDING DAY. THESE BLOGS WILL BE SHARED ON MY OWN SITE ALSO.
IF YOU HAVE ANY QUESTIONS, PLEASE FEEL FREE TO DM ME.

All images copyright Author and Kaleido

31. And so it begins…

Leading up to Friday 6th September 2019, I felt such excitement and a smidgen of apprehension all at the same time. I’d developed such high expectations of what the Kaleido could do for me. Aside from the ability to control the pump remotely (a big win on the wedding dress front), I hoped this teeny tiny piece of colourful technology would help me overcome many of the body image obstacles I experienced every day. Of course the biggest expectation was always that it would be the most effective management tool in my Diabetes Kit.  

Since returning to MDI in March, I’ve found that my weight increased and I found I needed more glucose to treat a hypo, I also shied away from a lot of exercise for fear of hypos. I knew that Insulin Pump Therapy would make a difference, having experienced it before; I was looking forward to experiencing the difference Kaleido could make to all of that.

 

When Jayne from Kaleido arrived, it literally felt like she came bearing gifts. From the bags the pumps were in, to the boxes; opening it all up was such a lovely, non-clinical experience, which is such a rarity when Type 1 Diabetes lives with you. Our every day is lead by clinical decisions; we spend a large proportion of our lives with medical professionals in clinical environments and so this really was a breath of fresh air. It made me feel like I was at the centre of this process rather than my Diabetes.

 

We spent time going through the kit and various functions, using the guidebook; which is colour coded to match the handset screen options (so helpful when you need info quickly) and having a few dummy runs at filling the cartridge before we did it for real. Filling the cartridge, fitting it in the pump, inserting the cannula and then attaching the pump was all new but it went smoothly and this time, when the handset confirmed “orange pump connected” I didn’t cry as I had at previous pumpstart, instead I felt empowered and raring to go.

 

In fact I was so raring to go that that evening, we went for a family dog walk. I was running after my 16-month-old daughter and laughing at her holding the lead; I chased my dog through the long grass and I held my fiancé’s hand as we watched our 2 girls exploring the nature reserve near us. The temp basal worked a treat and so did the extended bolus when we had pasta for dinner. We spent lots of time walking together over that weekend, my family, my Kaleido and I. Immediately I felt a sense of freedom I didn’t expect, a weightlessness; emotionally and physically. No longer did managing my diabetes feel like a chore, but more of a choice* and I cannot wait to try my wedding dress on at my first fitting.

 

 

*This is the best metaphor I can find for how I’m feeling and in no way am I suggesting that Diabetes, or it’s management is a choice.

DISCLAIMER:
THIS IS A SERIES OF BLOGS I WILL BE WRITING ABOUT KALEIDO. IN THE INTEREST OF BEING OPEN AND TRANSPARENT I WANTED TO SHARE WITH YOU ALL THAT I’M EXCITED TO HAVE BECOME A KALEIDOER. THIS MEANS I AM FORTUNATE ENOUGH TO GET TO TRIAL THE KALEIDO INSULIN PUMP. WHEN THEY ANNOUNCED THEIR UK RELEASE WAS IMMINENT, KALEIDO ASKED FOR KALEIDOERS AND HAVING BEEN KEEPING A CLOSE (AND VERY INTERESTED) EYE ON THEM FOR SOME TIME, I GOT IN TOUCH. I FEEL REALLY LUCKY THAT THEY’RE ALSO LETTING ME USE THEIR PLATFORM TO SHARE MY EXPERIENCES OF LIVING WITH T1D WHILST PREPARING FOR MY WEDDING DAY. THESE BLOGS WILL BE SHARED ON MY OWN SITE ALSO.
IF YOU HAVE ANY QUESTIONS, PLEASE FEEL FREE TO DM ME.

All images copyright Author and Kaleido

30. My Fiancé and her T1D

When I first met Niki I had no idea she had Diabetes, not that it mattered to me of course, but it wasn’t long before I found out when we went for a coffee at the café and she took insulin for it. Some of my family members have Type 2 Diabetes and I’m ashamed to say that I never really took the time to find out more, all of that changed the minute Niki whipped out her insulin pen within an hour of meeting her. I have a greater understanding of Type 1 and Type 2 Diabetes, I now understand what it takes to manage this condition on a day-to-day basis and the many thought processes involved. I understand that there are many dangers and I watch my fiancée keep herself alive every day, that’s not scary anymore, it’s the reality for her and she does it so well.

 

Aside from being the worlds foremost expert in Niki’s T1D she also has the most amazing human qualities which she readily extends to strangers. One of my favourite examples of this is when Niki took infusion sets to a complete stranger one evening because they’d travelled to Oxfordshire and had forgotten their spares. Niki didn’t hesitate to do this for someone she’d never met before and this is typical of the caring and nurturing person she is. She’s the most caring person I know and this also shows in the social media family she’s part of. There’s masses of support to be found there and Niki is very prominent in making sure people can find that. The friendships that have been made there are many, and I’m so glad I get to count these people as friends too now. (Not to mention my relief that they all approve of me).

 

 

After just 5 weeks of being with Niki, we travelled to London to get her first insulin pump. It was a stressful day for me, I knew the hopes and fears she had for this method of managing her T1D and I didn’t want her to be disappointed. All those concerns disappeared upon seeing the tears of joy roll down her cheeks as she officially began pumping insulin, I knew in that moment the relief she must have felt at having the ability to calculate her boluses more accurately and the freedom she hoped the various functions would give her. Sadly, that first pump hasn’t always made life easy for Niki and my heart has broken watching her struggle and breakdown because of it. There are always other considerations in addition to the standard daily thought processes Niki has, where to place the cannula, how to dress to accommodate it, what to wear to be able to access it. The Kaleido has already eliminated some of the pump related clothing issues for Niki; she suddenly owns dresses…without pockets!! I’m seeing her begin to feel more confident and comfortable in her own skin, especially around her Diabetes Management and it’s so good to see that again.

 

I see the Kaleido has the chance to give Niki the freedom to choose how she lives her life, because even though she is absolutely amazing at everything she does, especially keeping herself alive everyday, this will go a long way to helping her actually live it.

 

Written By Matt – Fiancé to Niki & Dadda to Moomin

 

DISCLAIMER:
This is a series of blogs I will be writing about Kaleido. In the interest of being open and transparent I wanted to share with you all that I’m excited to have become a Kaleidoer. This means I am fortunate enough to get to trial the Kaleido Insulin Pump. When they announced their UK release was imminent, Kaleido asked for Kaleidoers and having been keeping a close (and very interested) eye on them for some time, I got in touch. I feel really lucky that they’re also letting me use their platform to share my experiences of living with T1D whilst preparing for my wedding day. These blogs will be shared on my own site also.
If you have any questions, please feel free to DM me.

All images copyright Author and Kaleido

29. Why Kaleido

When I realised I would have to go wedding dress shopping, amongst the obvious anxieties and body image issues was the worry of what I would do with my pump in a wedding dress? Did I go wedding dress shopping with the need to be able to access my pump being a box to tick? Or did I, on this one occasion vow not to dress for my pump as I feel I need to do every other day? I chose the latter and I cannot tell you what a difference it made when I found my dress. However, I then had to try and come up with a solution to managing my Diabetes on my wedding day.

For me, I want to be able to pump. I don’t know how the emotion and excitement (or the copious amounts of dancing and delicious food and wine) of the day will affect my blood glucose levels, and the functionality of an insulin pump for me allows the flexibility I feel I need to manage that a little more discreetly than usual. My actual pump though doesn’t allow me the freedom I need to do that in my wedding dress. It would mean I am tethered to what feels like a breezeblock on the day I want to listen to my heart and not my pancreas. I would also somehow need to be able to access my pump to bolus, adjust basals etc. So whilst there are a myriad of solutions for some, like wearing it in a pouch on your legs or having a special pocket sewn into your dress, none of those were a solution for me. I was at a loss and really struggling, would this mean I have to inject on my wedding day, perhaps making my Diabetes more visible than I want it to be to others and me on such a special day?

So I began looking at other pumps the way most brides-to-be look at wedding shoes. There were a few that looked like they had potential, but once I laid eyes on the Kaleido I felt like I’d found the perfect wedding day accessory. Not only is the Kaleido pump beautiful to look at, (the colour choices are incredible), the functionality and size were winners for me, the pump itself is small and unobtrusive. With the added bonus (which felt like finding out the wedding shoes are in the sale), of the ability to fully control the pump remotely and with an equally good-looking handset that bears little resemblance to a medical device. You can choose whether to wear the Kaleido as a patch, pocket or bra (the ladies will understand) pump. Kaleido is made by people who understand what it’s like to live with T1D, and from the first moment I had contact with them, I felt like I was dealing with humans who are invested in people with Diabetes having the freedom to put Life, and the big events within it, at the forefront.

When my wedding day comes, I want to be Niki, The Bride. I’ve a sneaky suspicion Kaleido will play a very special part in making that wish come true.

Nx

 

You can follow my Wedding/Kaleido journey here

The Kaleido website is really informative (and easy to navigate) with a variety of blogs, videos, and other resources to help you find out more about these lovely people bringing colour and choice into the world of Diabetes Tech. 


DISCLAIMER:
This is the first in a series of blogs I will be writing about Kaleido. In the interest of being open and transparent I wanted to share with you all that I’m excited to have become a Kaleidoer. This means I am fortunate enough to get to trial the Kaleido Insulin Pump. When they announced their UK release was imminent, Kaleido asked for Kaleidoers and having been keeping a close (and very interested) eye on them for some time, I got in touch. I feel really lucky that they’re also letting me use their platform to share my experiences of living with T1D whilst preparing for my wedding day. These blogs will be shared on my own site also. 
If you have any questions, please feel free to DM me. 

All images copyright Author and Kaleido

27. Happy 18th T1D….

It feels somewhat surreal to be sitting here, on the precipice of parenting a 1-year-old and reliving the memories of events and emotions leading up to my daughters birth (which I promise to write about at some point), and realising that on my 17th Diaversary I was being induced. I wasn’t being induced because my little Moomin was overdue, or because of complications with my pregnancy, but because I live with T1D and a baby born around the 38th week of pregnancy tends to have better outcomes. I remember sitting in the dazzling May Bank Holiday sunshine, in the unusually quiet grounds of the hospital having a picnic, knowing that the process of my baby’s arrival had begun. I remember thinking how serendipitous it was that this much dreamed about moment (becoming a Mumma, definitely not labour), was happening 17 years to the day that Diabetes came into my life; serendipitous because without my T1D I would not have met my incredible Fiance/MoominPapa.

Living with Type one diabetes is not easy, it’s full time and no two days are the same. The last 18 years have certainly been a literal rollercoaster, it gets you emotionally, mentally, physically…..there is not a part of your life that isn’t affected by it or which it affects. I admit I’m weary. At 18 most parents are letting go a little to give their children a smidgen more independence; I feel sometimes that my Diabetes is regressing and needs more attention. A little like an older sibling may react when a new baby comes into its life. It is petulant, defiant and it’s demanding so much of my time and thought processes that I feel Mumma guilt when I have to treat a hypo or correct a hyper and Moomin is speed crawling towards me calling “MumMA, MumMa”. But I know this exhaustion is temporary, there are always better times ahead and just as a new parent has moments of wondering how they can go on amongst the exhaustion of suddenly existing solely for this little life that has come into the world, so do those living with a long term condition. It’s not just OK to have moments like this, periods of time where you just coast along in the hope that you’ll catch your breath and be able to forge ahead with the level of gusto and enthusiasm you had before. Nope, it’s not just OK, it’s normal, it’s expected, it helps you survive and more importantly, it’s human.

Throughout the years I’ve never really marked diaversaries, possibly because of my initial misdiagnosis and the resulting lack of understanding of the impact this condition would have on my life. Sitting here now, reflecting on the impact it’s had on my life over the last 18 years, I actually can’t help but focus on the friendships, the opportunities, the support and the strength it’s given me. This one will be spent doing last minute preparations for Moomin’s first birthday but considering the part, Diabetes has played in her arrival….perhaps that’s the most appropriate way of saying Happy Diaversary?! (Plus we still have some leftover cake from her Naming Ceremony/Birthday party at the weekend so I’m not really breaking any rules by not doing anything specific right?).

There’s so much I’ve learned on this 18-year journey, and I’m certain there’s much more still to absorb, for now, I’ll leave you with this;

The Pessimist Sees Difficulty In Every Opportunity. The Optimist Sees Opportunity In Every Difficulty.” – Winston Churchill

 

Until next time…

Nx

 

Images are copyright of the Author and courtesy of Google Images.