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.

26. Dear Aunty Natal, I just want some parts of this to feel normal…

It’s an interesting word, one that provokes thoughts of the majority and something that doesn’t stand out, but what exactly is normal when it comes to delivering a baby when you have Type 1 Diabetes? You’ll still be told you can choose where you have your baby and asked about what interventions you are and aren’t willing to have, you can choose between a vaginal or cesarean section delivery. There will be plenty of talk about normalising the experience as much as possible with regards to lighting and room set up and having your choice of music etc, but not many of those conversations, in my experience so far include discussions about what you, as the mum-to-be will possibly be feeling further down the line about the type of birth you’re advised to have because you have Type 1 Diabetes. If it’s something that’s weighing on your mind, then you’re of course encouraged to discuss it at any point during your pregnancy, but you might find you don’t feel sufficiently empowered or even informed to lead that discussion. For me it happened when we attended an antenatal class, ours was run by NCT but there are other options that could be on offer in your local area.

I feel that some of the decisions I made early on in my pregnancy have paid dividends in terms of allowing me some semblance of normalcy, and the ability to feel that, for the most part, my pregnancy has been about Moomin and I, not always my T1D and as a result, for the most part pregnancy has been incredible. It’s allowed me to not feel exempt from conversations with other mums to be or new mums, which before I was pregnant I feared could be the case. It’s also given me the headspace to just enjoy being pregnant, even those not so pleasant pregnancy symptoms and niggles; because my body is doing something incredible. All those times I’ve thought of my body as broken because of my T1D, I’d never paid much attention to the bits that aren’t “broken” and it’s a pretty amazing realisation. Ironically, the way I achieved this was by choosing to have my antenatal care solely with the Diabetes Ante Natal Clinic with no community midwives involved. Yes, I’ve had more appointments, but it’s less than I would have experienced if I’d had a “shared” care plan. It’s also meant I’ve avoided seeing someone who perhaps doesn’t know an awful lot about Type 1 Diabetes, it was frustrating enough at my booking in appointment where the midwife voiced many common misconeptions which held relevance to Type 2 Diabetes or Gestational Diabetes, because at that moment I’d become Mumma Bear who needed to ensure any risks to my baby were minimised, I also didn’t want to have to spend my pregnancy correcting Healthcare Professionals, I’d have to do it enough with people who knew nothing of any type of Diabetes as it was. At our NCT class in March, the course leader asked me if she should get some different snacks because “perhaps biscuits and fruit might not be very helpful in managing my BG’s?”. Firstly, I have to say how much I appreciated her asking in this way, the language she used wasn’t assuming I can’t, she was trying to accommodate me which was hugely refreshing for someone who didn’t know much about Type 1 Diabetes. I have a go-to response when people ask what I can and can’t eat:

“As long as I can access the carb content of something, or get close to guessing it, I’m able to give myself insulin to enable me to eat anything I want. With my insulin pump, I can basically make my body do what yours does.”

By the end of the course, the final part of that statement was; to my surprise, used to empower me and reduce some anxieties I was having about giving birth; “I can basically make my body do what yours does”. As you can imagine, that had a pretty profound effect on me and made me question the birth choices I had accepted as my only choice very early on in my pregnancy. My primary concern is still and always will be getting Moomin here as safely as possible, with me in one piece at the end of it too, but now I’m thinking more about the individual elements that make up the 3 stages of labour and what might be best for Moomin, Matt and I; both in those moments and in the long run. Additionally, I think I feel so lucky that I haven’t felt being pregnant with Type 1 Diabetes singled me out from any other pregnant woman, that now, as we approach the final furlong I just want to find a way to normalise those final moments of my pregnancy.

The current plan is for me to be induced somewhere between 37 and 39 weeks. I am completely ok with this, I understand the reasoning for it and that it gives Moomin the best chance of a good start in this world, and I have been comfortable with this as a plan since I pee’d on a stick in September 2017. I have also tried to remain realistic about this being a situation which cannot be controlled, and that whatever my wishes or plans, things may need to change to make sure Moomin and I get through this ok. What I became anxious and reluctant about was spending upwards of 24 hours, in the early stages of labour on a ward with 3 other mums to be nearby. No ability to climb in the bath when I want, distract myself with some Netflix binge-watching or a snooze in my own bed, to feel like I was exposed when at my most vulnerable and to be somewhat forced to share one of the most precious and profound moments I’ll ever experience as a woman; with a group of strangers who’d possibly be feeling exactly the same way. I also feared that Matt would be sent home when visiting hours came to a close and I wasn’t in active labour; we live around an hour away from the hospital and I was petrified that if things started progressing quickly, Matt wouldn’t be there when our Moomin arrived in this world. None of these had been things I’d thought about in great detail until we attended NCT. on the second day of the course, I spoke to our course leader about these concerns, mostly hoping she would know more about the hospital and could advise a little from experience. She wasn’t able to help from that perspective, but by day three she told me about some different options for induction which may be available to me. She explained that my statement “I can basically make my body do what yours does” had made her wonder why I couldn’t explore some alternatives. So, feeling empowered I had the discussions with my team, knowing the likelihood of some of what I was asking for wouldn’t be possible and therefore a little apprehensive; but armed with the mentality that “my body can do what yours does”, I plucked up the courage and began a conversation.

As expected, not all of what I was asking is possible, but I am massively reassured, my concerns have been turned into a plan and the date has been set – the weather even looks favourable. Ultimately though, I feel I’ve been able to create something that feels a little less clinical when I think ahead than it would have done if I hadn’t asked, something that still feels wonderfully scary but more comfortably so without the extraneous concerns, and not a chance Matt will miss a thing. I feel like that’s another win for normalising as much of pregnancy with T1D as possible.

Nx

 

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

25. Dear Tea….

Hello Dear Friend,

I am so sorry it has been so long since last we shared some quality time together, perhaps with some buttery toast or a delicious sandwich; even the occasional biscuit. I feel awful that the last few times we’ve had an opportunity to meet I’ve turned my nose up at you or rushed to the toilets for fear of being sick. I want to reassure you, old pal, that it is the fault of Moomin and not me. You see my unborn child is a little young to appreciate the joy, comfort, and flavour you can bring to life and has, perhaps in his or her (extreme) youthful naivety felt competition for my affections between you both. Of course, I’ve tried to set the record straight, my bubba seems to be quite strongminded though and whilst Moomin is lodging within me, I have had to find alternatives. Rest assured I will be teaching my little love monkey to embrace tea, (although maybe not literally, hot liquids and a newborn don’t sound like a good partnership).

Now I know I just mentioned alternitives and I need to be clear that these are not and never could be; replacements, fizzy water, lemon squash and I have always been close – you’re aware of that so they’ve very kindly stepped in and helped to hydrate me at times when it of course would have been you. I have had the heavy burden of needing to find a way to satisfy my need for a nice warm beveridge though and I turned to fruity tea for this. None of this has replaced you, at every sip I’ve longed for the robust, smooth yet somehow delicate balance of flavour a well made cup of tea provides and longed to be reunited with it.

Some women miss the foods they can’t eat during pregnancy, and there have been a few of those – see you soon medium rare steak, pate, brie and cambembert (although the latter two have been eaten in a panini or baked with a nice fresh french stick, who doesn’t love a loophole) – and of course you miss alcohol! I got engaged and still havent celebrated with bubbles or a cup of tea, what cruel world is this I live in? But I’ve done it, I’m amost there and a lovely cup of tea feels like it’s within my grasp. Soon I will begin a countdown like a child in the run up to Christmas and I will savour that first cup of tea the way my Dad savours unwrapping presents that are clearly bottles of wine, sweets or biscuits, (he takes ages by the way).

Ashamedly my darling cuppa, I’m not sure if I’m more excited at the prospect of our reunion or meeting my baby for the first time….. Please don’t be offended that it’s more likely that the baby will win. I hope Moomin will allow me at least one, nice, hot cup of tea a day. I am prepared to drink you cold though – just until we’re fully caught up on the last 9 months….by which time I’m sure I’ll have a routine of tea drinking that will be more settled than that of my newborn.

Sip you soon.

NxXx

 

 

Images are copyright of the Author

 

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”.

IMG_0427
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

IMG_0451

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.

 

 

 

 

23. What’s Niki up to now?

Hellooo and welcome to the new look blog. 

I’ve felt for some time that I needed a new name, Discombobulated Diabetic hasn’t felt like me for a while now (let’s blame Matt). I felt I needed a moniker that would focus on the incredible future that lays ahead of me without dismissing the past that has brought me here. 

I’m excited to share the rest of my pregnancy journey, including how I’m navigating through it with Type 1 Diabetes along for the ride, with you all. As I move from Mum-to-be to Mumma with babe in arms, I’ll no doubt find comfort, friendship and reassurance from all you other wonderful parents out there and just to make it even more interesting (read potentially hilarious); as I get used to motherhood, I’ll throw in some wedding planning to amuse myself and you with.

There’s lots to come and I really hope you enjoy reading about it, please have a look over the updated homepage and do get in touch with your questions and comments and let me know if there’s something you’d like me to write about. I’d love to hear from you.

Niki x

 

 

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

 

22. A dream is a Wish your Heart Makes

 

It’s no secret that I’ve always wanted to be a Mumma, Matt sharing that dream is just one of an infinite number of reasons why I fell in love with him. We’d talked about becoming parents at length and decided that we wanted to start trying at the beginning of 2018. I spoke to my Diabetes consultant because my HbA1c certainly wasn’t at the desired preconception level, but it wasn’t dangerously high (or even high to be honest, just not “ideal”) either, and I was pleasantly surprised when he told me that given the way I manage my Type 1 Diabetes day-to-day, he wouldn’t be worried about the safety of me or my unborn child at all if I was to fall pregnant with that number, but if I could bring it down some more then that would make life easier and safer for us. The plan got discussed with my Diabetes Specialist Nurse, and once the excited talk about whether we’d prefer a boy or a girl was over, she explained the way the preconception courses work and said she’d send off a referral, but to expect a little wait before hearing anything. Knowing that in an ideal world I should be taking a higher dose of folic acid for around 3-6 months prior to trying to conceive, I spoke to my GP at my old surgery before I moved and they very happily added this to my repeat prescription knowing they were seeing the beginning of a long-held dream come true. So there they are, the first tentative steps towards making sure I could have as healthy a pregnancy as possible taken, I was excited and petrified all at the same time but what an incredible bundle of feelings to have.

 

I hadn’t read much about T1D and pregnancy before having those conversations, I’d picked up some bits of information from skimming various sites, including Diabetes UK, hearing common misconceptions (“Diabetics have 12lb babies so have to have a c-section” was the funniest one I heard from someone who didn’t know anything about any of the types of Diabetes), and reading the experiences of others within the Diabetes Online Community and the blogs of Mums and Mums to Be that Diabetes UK have collated. I have to say the latter combined with just talking to my healthcare professionals were the best things I could have done, I have seen a few others hoping to become parents seem frightened off by some of the information available to read. I am certain that’s not the intention of the information, after all, we all know that in some circumstances knowledge can be power; but if you’re just taking those tentative first steps toward parenthood as a Person with Diabetes, talk to those of us who’ve done it, Dream Buildersare doing it and who are also taking those first steps, it’s the best way of balancing all the information out there. It goes without saying that Your Diabetes May Vary and not everyone will have the same experience, which is where your Diabetes Team come into play and support you more specifically. So cultivate good relationships with them and if you’re ever unsure or unhappy; speak up. You will see each other at least every few weeks throughout your pregnancy, they will be there for some of the biggest moments of your life, so it’s vital that you work together.

I continued taking the folic acid each day and tried to put the excitement for 2018 to arrive to the back of my mind, whilst we settled into our new home and I got used to living in a place I didn’t know very well. We booked a long weekend away at our friends holiday home in West Sussex for the beginning of September and were so lucky with the weather. We had a day out exploring Arundel Castle and Littlehampton; where Matt had spent part of his summers as a child, we spent evenings walking along the beach with Ruby, watching the sunset or the moon reflect upon the water, IMG_9456then we’d relax in the hot tub looking up at the stars with Matt sharing his astrological knowledge. We talked about taking our own children one day, perhaps getting our respective families to join us, we talked about our anniversary trip to Malta in November and I decided I would work on losing some weight ahead of the holiday which would also help with some of my chronic pain issues, particularly ahead of a pregnancy. The entire weekend was heavenly, aside from the fact that tea (and those who know me will be aware that I drink a lot of tea), didn’t taste right. It made me feel sick almost, at one point I was convinced it was the milk, then it was the dishwasher and so every mug was washed by hand prior to making a brew; nothing worked. I managed a cup without feeling too sick whilst we were at Arundel but I suspect the slice of lemon cake helped with that. Add the somewhat more persistent hypos to my newfound ability to cry at most things and these moments of feeling unwell and like I have no control over my body were hellish! No amount of Haribo is a silver lining to that. The day before I found out I was pregnant, I had one of these persistent hypos and I just burst into tears. Matt; as ever was an absolute rockstar.


I took a photo of that moment (above) because I’m always curious about what my hypos look like to other people. Attractive isn’t it.

I’ll be honest, the thought of Moomin one day seeing me in this state terrifies me; but I hope that Matt and I will do a good enough job of explaining it all to remove any fear, I’ll also have the help of my exquisite niece to help her little cousin know what to do and to know that everything is and will always be ok. (You can read about Little P here).

Monday arrived and we were sad to leave Selsey, I was sad to have not enjoyed Tea or Matt’s delicious poached eggs (#notaeuphemism). My mind raced wondering what had made these things I loved so much make me feel nauseous but then I remembered the lovely red wine I’d enjoyed and thought it’d be ok when I got home and tea and poached eggs would again be my friends.  Looking through the photos when we got home a memory was triggered; as we admired the stunning Chagall stained glass window in Chichester Cathedral, I had felt compelled to go into the chapel next to it. I didn’t know why I felt so drawn to it, I was raised CofE and went to church and Sunday school, but my path has taken a more spiritual, all-inclusive direction and to feel so compelled to pray was something I couldn’t ignore. In that chapel I felt my thoughts being guided; amongst the many thoughts, I asked for a healthy pregnancy and child. It was a very emotional experience and through the tears I wiped away when I rejoined Matt in front of the window, I put the prayer for a healthy pregnancy and child down to a future wish. It was only when I remembered this that I felt another compulsion……

 

 

 

To be continued…….

 

 

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