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

21. The Fear VS The Hope

I think we can all appreciate that embedded in the minds of every pregnant woman is an inherent fear. Borne out of the amazement of what our bodies are capable of, intertwined with the realisation that our bodies and how we treat them, are responsible for making sure that wondrous piece of work; a new life, arrives safely for all the world to admire.

It’s completely understandable then, given the nature of being pregnant whilst also living with a long-term condition such as Type 1 Diabetes, that fear could have the power to consume you. With a condition that doesn’t produce the same results 2 days in a row and the knowledge that maintaining a stable blood glucose, particularly in the first trimester, is important for baby’s development, fear can very much be the lead emotion. But at what point do we allow Hope the opportunity to shine?

For me, as scared as I am that one untreated high blood glucose overnight or a persistent hypo could impact my child in a way we’d never be able to prove, I am mostly filled with hope and it is this that becomes my umbrella to shield me from the inevitable moments when fear tries to drench me. I am by no means implying that it’s a simple as flicking a switch. Emotions are hard enough to manage at the best of times, but when you have someone beyond yourself to consider, it feels like it sits somewhere between a no-brainer and mission impossible. In my case, I spent a long time learning how to feel more positive about things, appreciating that what you put out there into the universe is capable of becoming a self-fulfilling prophecy. And now, more than ever I seem to have a heightened awareness of how my emotions impact my physical state as much as they do my mental one, another branch of fear creeping in, another opportunity for hope to rescue me.

She stood in the stormIn my entire life, I’ve spent more years hoping I’d become a Mumma than I have fearing I wouldn’t and despite consistent concerns that it may never happen for me (Endometriosis, issues with my cycle, not finding the right man and Type 1 Diabetes) somehow that beautifully pesky dream of mine wouldn’t let me give up. I was one of those women that had set herself a “scary age”, you know the one where you say “If I haven’t achieved X by 25 then I’m giving up”? That age would arrive and I’d extend it like I was hitting a snooze button on an alarm clock. I realise now that those “life goal extensions”, were this intriguing life redirecting me towards the place I now find myself in; a place where, amongst other things I am now the Fiancée of the most incredible man, we are building a home and a life together which we will share with our child when he or she arrives in Spring 2018.

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There will, without doubt, be more moments of looming fear before I hold our child in my arms and beyond, but the hope I have for the future, for the sheer joy ahead that still leaves me speechless; will embrace me in those moments and remind me that fear is OK because it will always be ultimately powered by hope.

Until next time.

Nx

 

 

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

19. On the 12th day of Christmas and the 4 months since….

I wish I could tell you that by day 12 all was wonderful and marvellous and I had my basal rates sorted, my ratios and correction doses accurate and on the money, but alas; on day 12 of this pump start journey I wanted to throw it out of the window.

I was told that this officially makes me a pumper!

4 months on and I’m still fine-tuning, but that’s OK; I’ve spent 15 years doing MY Diabetes one way, so it stands to reason that it would take me some time to adjust to doing MY Diabetes a completely different way, along with some other discoveries……..

I’ve accepted that the smooth lines of Libre’s and CGM on Social Media aren’t the daily reality for everyone and so I must stop judging my own reality by these, in doing that I was creating barriers to praising my own undulating (instead of spiky) lines when they happened, even if only for a couple of hours. 

I’ve learned that literally saying out loud to my boyfriend, “I’m happy with MY Diabetes over the last few hours” makes a mammoth difference to how I feel about MY Diabetes in that moment.

Working with some wonderful professionals, I’ve acknowledged how difficult MY Diabetes journey has been and how isolated I have felt during the last 15 years. By acknowledging all of that, I’ve also acknowledged and am learning to celebrate how well I have managed MY Diabetes pretty much alone in those 15 years, how strong I have been; how strong I AM.

I have a permanent mental post-it note in my head that reads: “When someone who doesn’t have Diabetes and knows nothing about an insulin pump, assumes it’s an artificial pancreas and the minute you connect your issues will be gone, don’t let that make you feel like a failure. Educate them about YOUR Diabetes instead”! (It’s one of those bigger post-it notes).

I’m learning to unlearn, sounds daft I know, but just as you do with driving a car I developed certain “habits” around how I managed MY Diabetes on MDI. Now, as much as there are new “habits” to learn, the old habits need to be unlearned.

I accept and celebrate my bruises – they mean I’ve kept myself alive for another 3 days thanks to my battery operated pancreas and whilst they’re bigger, more regular and a little more sore than the occasional bruise I’d get on MDI – the volume of bruise causing activity associated with MY Diabetes is greatly reduced.

I’m more mindful now than ever about where seatbelts meet infusion sites, or how waistbands sit and move as I wear them. I’m getting used to considering and planning bath or shower timing and set changes, in addition to considering and planning activities and Temporary Basal Rate requirements so that I’m in charge of MY Diabetes at all times. 

I still struggle and have meltdowns over what to wear, but now I just blame MY Pump!

It’s not easy, you have to be organised and mindful and resilient, but we all do that on a daily basis anyway. I didn’t begin my journey to IPT because I thought it’d be anything less than hard work, I went this route because I wanted the best treatment for my Diabetes after 15 years of “winging it”. If I could achieve what I know I will achieve with an Insulin Pump on Multiple Daily Injections, I wouldn’t be attached to my peacock feather coated little box 24/7. MY Diabetes Consultant asked me last week if I was Happy with the decision to move to Insulin Pump Therapy, my answer was:

“Yes, because although there’s not much change right now, I am hopeful and certain that the change is on it’s way and it’ll be well earned!”

Nx

11. “On the First day of Christmas….

…as I cleaned my new love’s kitchen,
the ping of an email did chime…

…I picked up my phone and I watched as it delivered,
a message from my DSN…

…Greetings young Niki I hope this finds you well? I’ve something for your festive diary…

…On the fifth day of Christmas the NHS will give to you……….
* An early start
* Some anxiety
* Raised BeeeeeGeeeeeee‘s
4 hours of learning, some maths and percentages……and a Medtronic 640g!!!”

(#EARWORM)

That’s right folks, after months of observations, data collating, a change of Diabetes team and probably a metric tonne of insulin; the wait is over, I start Insulin Pump Therapy on Monday 5th December.
640g
I only found out this morning, I’m nervous and I’m excited.

Someone asked me why I pursued this treatment and if it meant that it would mean I’d have to do less. Well first up, I didn’t pursue this because I thought it would mean “less work” with my Diabetes, I went into this pursuing the best treatment for my Diabetes; which turns out to be an insulin pump due to overnight hypos with no awareness, fear of exercise (due to having hypos) and the much maligned Dawn Phenomenon (collectively referred to by a friend as; “Niki’s weird brand of D”). It all meant my #LibreArt would often resemble steps, mountain ranges, rollercoasters or the lines on the monitors you see in Casualty…. All of which means I do not feel well on an almost daily basis, yet I foolishly accepted this as my fate.

I’ve felt overwhelmed a couple of times today, but my spectacular boyfriend has reassured me, my best friend has reminded me of my desire to live well with Diabetes after 15 years of not really doing so (despite what I thought – sneaky Diabetes), and the fact that, unlike when I first began this journey with the advice and guidance of Melissa from Input; I am not alone anymore, makes me appreciate the timing for everything in life –  I do suspect Anna and some of my other exquisite Angels have played a part in that.

As I catch a ridiculously early train into London on Monday morning, Matt will be by my side despite having to work a night shift on Monday, because he wants to learn about my Diabetes, he wants to support me and care for me when I need it. I’ve not had someone walk so steadfastly by my side with this before. I in no way dismiss the support of my exquisite humans – Bestie Sarah in particular, but this feels different, Sarah rarely holds my hand unless we’re pretending to be young girls skipping with carefree joy!

karl-pilkington

The Boyf…. (?)

It’s literally been “all change” as far as my life with Diabetes is concerned this year, and it’s all brought me to this place…..

I wouldn’t know about the GBDOC or DOC without Diabetes.
I wouldn’t know about the excellent work of Input, Diabetes UK, Team BG, Ocdem or Imperial without Diabetes.
I wouldn’t have made some treasured friends – with and without diabetes, without Diabetes.
I wouldn’t have discovered a love for peer support that I’d like to turn into a career without Diabetes.
I wouldn’t have learned that I can live well with Diabetes, without Diabetes.
I literally wouldn’t have met Matt, without Diabetes!!

img_0407-jpg

Silly Ridiculously Smiley People…

I’ll aim to post more about my pump journey as I go on, I’m sure I’ll be asking for advice and needing the wisdom and support of my amazing friends from the Diabetes Community.

Now……to name it or not to name it????

Nx

 

 

Images copyright Discombobulated Diabetic & courtesy of Google Images

7. Once Upon a Dream……

To the greatest Love I will ever know,

I turned 35 last week. I thought I would’ve met you long before now and I’m so very sorry that our first hug is still a little way off, there is much to achieve before we can begin creating memories together. But, my Little Love Monkey, I promise you it will be worth the wait, just as I try to promise myself on a daily basis that you, will be worth the wait, despite how impatient I feel.

For me, becoming your Mumma was never going to be the easiest journey. There have been various, shall we call them; “Life” obstacles that needed to be overcome and then there are the medical ones to consider. I have always sworn that the day your travels to me begin, I will be the healthiest and happiest version of myself – so that I can give you the very best of me, to enable you to be everything and anything you dream of being. There is also another reason; I have something called Type 1 Diabetes. What this means for me each day is a lot of work, it means I have to take medicine every time I eat or drink if it has carbohydrates in it. There are even occasions where I need to take some insulin without anything passing my lips, I’m told it’s a little bit like having a child at times, except Diabetes doesn’t make you watch In the Night Garden on repeat…..what exactly is a Ninky Nonk? Perhaps you can hold my hand as we find out together, I’m a little scared…

From the moment you’re conceived, my T1D will be a part of your life and each day I will teach you something about it. I will also do my utmost to protect you from it. By that I don’t just mean from getting it too – the chances of me passing on my beta cell hating genes are slim, in fact less than 5% I believe, but I will always try to shield you from having to deal with the daily maintenance, the darker side of Type 1 and mostly from being afraid of it. I will do as I have with your cousin Little P, and embrace teaching you about my kit and my medicine; in fact I hope Little P will play a big role in your Diabetes Education – I must think of a more fun name for it before you’re here though, for my sake as much as yours.

One of the biggest ways I hope to make sure I’m able to do all of this, is by having the best blood glucose numbers I possibly can when, by whatever means, I buy your ticket for your travels home. The advice is always to plan, and sometimes life doesn’t happen that way, so instead my goal is to try to have those numbers everyday and to learn to appreciate that perfection – perhaps with very few exceptions – isn’t always achievable. One of the many lessons my life with T1D has given me, is that your best is ALWAYS good enough, regardless of whether that matches up to what others expect that to mean, because your best means that you’re engaged with the goals, and therefore you’re making an effort. This is something I will share and instil in you everyday. So at the moment, my best isn’t perfect, but it’s good enough for now; because I’m trying to better it.

When I think of you, there’s a song that comes into my head………..Dream BannerLyrics Once Upon..

The lyrics resonate with how I feel about you, of course I don’t know you yet, what I do know is how loved you are and that the growth potential for that love, is infinite and certain. I know that when we do meet, I won’t feel like I am meeting you for the first time, instead it will feel like a reunion. I will undoubtedly sing this song to you at many points throughout our life together, please focus on the intention rather than the delivery.

I’m sure I’ll write again Baba, until then I must go find your Daddy……
(Sound of canned laughter à la late 80’s TV sitcoms).

With every beat of my heart,
Love always,

Mumma xXx
(To Be…)

 

 

 

Images Courtesy of both Google Images & Copyright Discombobulated Diabetic.

4. Auntie NeNe has Diabetes…

Telling people I have Diabetes has become so second nature to me, and whilst of course I still get the occasional “So you can’t eat sugar then?” questions; for the most part people seem to understand what it means. So it felt somewhat strange to realise that my 2 year old niece doesn’t understand what it means; yet she is so much more curious than anyone I’ve ever shared this part of my life with before.

I remember back in late November 2015, when my precious little goddaughter and niece was just 19 months old, I went to visit for a Christmas weekend in the midlands with Little P and her parents. Oh she was so full of the joys of the season, and it was this weekend where her curiosity about everything first became apparent to me. She was trying on my shoes, playing with my hair, rifling through my handbag and my purse – she was £2 up by the end of that particular exploration – but then she took out my “kit”. Us Diabetics all have one don’t we,  whether we use the cases that come with our glucose monitors, or whether we consolidate our equipment into one, very colourful, couldn’t be further from medical looking make-up bag, as I do. Clearly after stealing money from her Auntie NeNe, this colourful little gem was far too alluring in Little P’s explorations. As she enthusiastically removed the multicoloured case out of my bag, I felt a panic; are there any pen tips in there that could hurt her? Has the top of my lancet device come off again, exposing the sharp tip as if it were a banned spindle in Sleeping Beauty’s castle? Along with, possibly selfishly, “please don’t break my insulin pens”. Instantly, I found myself saying; “That’s NeNe’s medicine, shall I take it?” and removing the kit from view whilst Little P moved onto something else.

Little P & The Kit

I took a photo of that moment, but I seldom thought of it again until the beginning of April this year, 2016 – 2 years of watching Little P grow, 2 years of learning all about a different way of loving, and of being loved. This little angel has my heart wholly and completely, she has me wrapped around her little finger and I am at her mercy every time I see her – starstruck and in awe! The day before Little P’s “more southerly” birthday party, she came to visit me with her Nanna (my mum) to meet my fur babies, see my home and have a coffee in the little market town by the river where I live. We were also going to choose balloons!!! We had coffee, we had a mooch and brought balloons, we even saw a papier mache cat that was bigger than Little P. As we got to Waitrose, I felt the familiar symptoms of a hypo…oh no! Thankfully there’s a new cafe in this particular branch, so I sat down and tested to check where I was on the scale of high-ok-low by which we set our daily targets and subsequently live our lives. I then had to “administer” the dextrose, which given that I hadn’t purchased it at Waitrose (it’s cheaper in Sainsburys or Boots often have some good offers – other shops are available), felt a little like rebellion. I don’t usually panic when dealing with hypos, but then I’m usually on my own; in this situation I was acutely aware that Mum had a long list of things to get done before the following day’s revelry, and Little P would soon need her nap, so I sent mum off to gather her wares from the aisles of Waitrose, with Little P making the choice to stay with Auntie NeNe. Right there, in that moment in the middle of Waitrose, I became so conscious of the fact that I was responsible for this little angel at the same time as perhaps not being fully compos mentis, I certainly couldn’t drive so how could I possibly be effective in the care of my little sisters most precious gift?! Well, I needn’t have worried, Little P was looking after me! Carefully, one by one feeding me the intensely flavoured, chalky, yet somehow quite juicy sweets and checking I’d finished it all before allowing me, as she puts it “maw medsin” (I’ve written that how she says it to help you appreciate the cuteness, I can spell…really). This little girl who was just over 24 hours away from being 2 was showing me so much compassion that I fell in love with her even more, something which I thought impossible!

I decided then that I wouldn’t be scared of her hurting herself with my medication next time she’s curious, I wouldn’t take it away from her and avoid the opportunity to start filling her with knowledge about this condition, which will of course impact her life because her Auntie NeNe has it. No, all future grabs of my kit would be met with “ooh that’s Auntie NeNe’s medicine, shall I show you?” I planned to take control and be proud and honoured to share this with her, particularly as no one else in our family can share this with her. So I’m determined to make it something else she positively associates with me. I hope that if she ever sees someone else testing their glucose or taking their insulin, she’ll think about me and be proud that I look after myself and manage my Diabetes on a daily basis, but also that she’ll feel reassured that I’m not the only one in the world that has to do it. It’s an alien feeling to think ahead to her being the same age as me when I was diagnosed, when “Little P” will no doubt be “Taller Than NeNe P”, and consider the comparison; for us (Sister, Mum, Dad and I) Diabetes came into our lives like a wrecking ball aiming for the wrong building (sorry if you now have the song in your head), but for Little P, she will have grown up with it, she can be one of those exquisite humans who show understanding and empathy and a desire to share knowledge about it – even though she doesn’t have it.

My resolve to be more open and dare I say it, educational about my kit; for that is the only part of Diabetes that her marvellous mind is capable of processing at her current age. The kit is tangible and visible; it would be too much to explain the “mechanics” of Type 1 Diabetes to her at the moment – and I’ve got to finish bringing the rest of the family up to speed first! Anyway, as I was saying; my resolve was somewhat thwarted by Little P’s new found assertiveness when I saw her over the last Bank Holiday weekend, assertiveness and her continued astounding grasp of the english language (as in for someone who’s still only 2, she didn’t speak a foreign language first). One of Little P’s new “catchphrases” is “P do it” and she’s pretty insistent that you do indeed allow P to do it, sometimes she’ll even cock her head to the side in an attempt to meet your gaze, knowing full well that her smile is a difficult one to resist! So, out comes the the kit, instantly recognised by Little P as something she still needs to get into. The nano second my fingers clasp the zip, her tiny hand reaches out and grabs my fingers and by proxy, the zip; “P do it” she says. A moment of panic, which I now view as a speedy risk assessment, and I allow her to help me open the bag. Her tiny hand then starts reaching inside, I’ve decided I don’t want her to think that’s OK just yet, part of the risk assessment; so I ask her “Auntie NeNe show P how it works?” an emphatic “Yes” accompanied by nodding of the head and that deliciously excited grin she does in anticipation of something new, there’s even a little “ooh” which she delivers with an intake of breathe, like she’s preparing to blow candles out on a cake. I insert the test strip into the meter and it becomes very clear that this is where Little P wants to take over, she wants to do the entire process to me. Testing my Blood Glucose?!?! But no one who isn’t medically qualified has ever done that in my 15 years with this condition…..but suddenly I think, OK here’s my first goal with her. Once she knows how it works, and she’s bit more steady with her hands and coordination, I’ll let her hold the meter whilst I prick my finger, and then she can collect the blood. But how do I start teaching her that process?

As Little P was repeating “P do it, P do it. Auntie NeNe, P do it”, I chose to continue testing myself and ask her to watch what I do because I was going to do it to her after….she watched and waited (albeit fidgeting like an impatient 2 year old does), and then it was her turn. I held the lancet device to her finger and instead of pricking her finger I made a “bing” noise, she  reciprocated with the “Ooh” on the breath intake. I then instructed her to put her finger by the slot in which I usually insert my strips, I waited and then made a “beeboopdop” noise and looked at the meter; I informed Little P that it said she is “practically perfect in every way” (Thanks Mary Poppins – who now has a spoonful of sugar in their head?). Little P smiled, took a brief glance into my kit and then smiled at me again…..”NeNe Bubbles…..” Lesson 1 has begun.

One day I will actually perform a fingerprick test on her, I’m planning to do it to my whole family – I may even subject my friends to it so that they can all understand this integral part of my life a little better. But for now, I’m beyond thrilled to have another way of telling Little P that I think she’s perfect and how much I love her. Because clearly doing that 1million times whenever I see her isn’t already enough.

LOVE

2. An Insidious Infancy

Whilst reading the post below, please do so knowing that I write of my own experiences which will most likely be very different to those of others. In no way, can my experiences be considered as advice or tips. If you suspect that you have been misdiagnosed or are still feeling unwell following a diagnosis; there are many resources for seeking help (I have included links to appropriate organisations in the body of my posts). Your first port of call MUST be a Doctor. You have the right to ask to see a different Dr, and indeed ask to be referred to your local hospital’s Diabetes and Endocrine Department, to ensure you get the best care.

Following the “touch of Diabetes” Diagnosis, instead of getting better my health continued to deteriorate. I was prescribed metformin and the only checks carried out at check ups were urine dip tests. It wasn’t long before I disengaged with the medical team at the small village surgery, who had showed such insensitivity in the way they gave me this life changing news, because I wasn’t feeling any better even though I now knew what was wrong. I felt let down, angry with a “why me” mentality and an all-consuming distrust began to grow.

Over the next 4 months, I lost weight rapidly, which everyone kept saying must be because I’d been given a diagnosis and was eating well, (I didn’t and don’t eat badly, I barely eat at all infact), how wrong every single one of those people were, and it actually contributed to me not getting the help I needed. You see, I’ve been made to feel insecure and conscious about my weight since a young age, wrongly so, and by saying the above to me it played into my desire to be thin. I remember one person even saying to me, and this is almost verbatim; “I do feel everything happens for a reason, and I think you were given Diabetes to help you finally lose weight”! despite niggling feelings that what I was experiencing was wrong, the discombobulated side of me was enjoying the compliments and the rapidly reducing reflection in the mirror. What those people couldn’t see was the discomfort I was experiencing alongside getting thinner, the constant thirst, the tiredness, the thrush, the constant need to pee. All the while still taking the medication that had been prescribed to treat my Diabetes and supposedly make me feel better.

As my waistline decreased, my desperation increased! There was one occasion where I was so thirsty and so bored of water that I drank an entire bottle of vodka and it had no effect on me whatsoever! I didn’t even mix it with anything, had I of known I had a free pass maybe I would’ve made some cocktails. On top of the issues directly associated with the Diabetes, I felt my entire world was crumbling around me; I’d not been at work for some time, which knowing what I do now wasn’t unreasonable, although at the time I felt so guilty that I was off sick and even though I was doing everything I was told in order to get better, it wasn’t working; I felt like a failure! I’d never considered asking to see another Dr, on the one occasion I had gone back to the surgery to question my diagnosis I was told; “It can take up to 6 months for the condition to settle and for us to get the level of metformin correct” they were the medical professionals, the ones with the training, so I trusted their words. To help you understand why I just didn’t look it up online like we seem to do with everything now, 15 years ago the internet wasn’t as readily accessible as it is now; I don’t even think anyone had heard of broadband, let alone WiFi. Personal relationships were failing as a result of my ill-health too, I’d not only disengaged with medical professionals, but neighbours, colleagues, friends and family too. My emotions were all over the place and I had no filter, no way of controlling my reactions and I was possibly the most unreasonable person you could come up against, there was no logic to my thought processes and no consideration of how my behaviour would make others feel; traits which aren’t me at all. This of course was because I was so incredibly tired both physically and mentally, yet I could sleep all day and all night if I didn’t need to wee all the time!

During this time my friend W was my hero! He was there for me unconditionally and whilst I don’t recall being snappy or unreasonable towards him, I’m certain I was – and he never let me push him away. W became such an integral part of me feeling microscopically better at times, that when he went off to the other side of the world that feeling of being adrift, of being lost and hopeless as well as completely powerless to change things returned. I felt so utterly alone, as if I was bobbing up and down on a rubber dinghy with no paddles or hope of being found after drifting out to sea, everything around me appeared calm, but inside I was tormented. I want to be clear at this point, none of what followed was W’s fault, had he of not been there over the last few months my intention of what happened next would most likely have been very different!

On 4th September 2001, I reached a breaking point fuelled by a desperation to feel better, a breaking point that I don’t want anyone else to get even remotely close to. I spent some time thinking about what I could do. I had no money, no food in the house at this point and despite not having much of a relationship at that time with my parents, that’s where I decided I was going. Beforehand though, I took an overdose. I want to be very clear; I did not do this because I wanted to die, I wanted help, more than anything I’d wanted in my life leading upto that point, help was what I desired above everything and looking back now, there is a better way of asking for that help!

On the way to the shops, we came to a familiar set of traffic lights. These lights give you a choice of 3 directions to head in and my addled brain could not remember which one led where. I recall feeling my entire body fill with anxiety, I suddenly felt an unease with what I’d done and instead of waiting to pass out and have my mum raise an alarm, I took ownership of my actions and told her myself. This was a fairly monumental thing to do considering where my mind and body was at this time, I realise that now and I’m proud of myself for making the right choice in that moment, at those crossroads. My recollection of my mum’s reaction is hazy, I suspect I was beginning to experience the effects of what I’d done at this point but she drove me to the hospital where, in the car park I vomited quite violently in a corner of the car park. What came up tasted acidic almost, it felt as though every part of my body that was working to expel the illness was disintegrating at the passing of a natural chemical, albeit a toxic one that my body had been making for some time as we were about to learn. 

Once we got into A&E, I went through triage and tested and seen by doctors. These were a group of people I was reluctant to trust given that their “Learned Colleagues” had played a starring role in the position I was in now. The fact that they took blood and urine and tested my blood glucose levels went some way to helping that reluctance dissipate. I think my BG at that point was so high it didn’t even give a numerical reading on the blood glucose monitor. This was all a pretty new experience to me, I actually felt quite happy to be poked and prodded with needles and cannulas and fingerpick tests, and hooked up to pieces of equipment. Eventually the decision was made that I needed to stay in hospital to get this under control, I had Diabetic Ketoacidosis. One of the effects of this is malnutrition because virtually nothing you eat or drink gets absorbed the way it should, to quote one of the nurses “everything has basically just been going straight through you for the last 4 months”, if I’d not been a bigger lass, I would have been dead – we call it padding for a reason it seems!! The discombobulated part of me, in that moment agreed with the rest of me, as lovely as it was to have lost weight it wasn’t worth feeling as I had, and I was so grateful for my curves. I was transferred by ambulance to another site where a bed had been found, I was hooked up to a sliding scale to get my blood glucose levels under control and more importantly, get me feeling better. Of course I was anxious to be in hospital, particularly on my own on a ward full of ladies much older than me; I almost felt like I would’ve been best placed on a children’s ward because I felt such a vulnerability that I certainly didn’t feel like a 20-year-old! It was here, at a hospital that is now houses and a supermarket, that a nurse provided me with the comfort that I needed, and had probably been needing since 7th May. She sat with me and explained that I would probably need to treat my diabetes with insulin injections, but that I would find I had much more freedom and would probably feel more like a 20 year old girl should. She disclosed that she also had Diabetes and the most valuable advice that she was given was that “her diabetes lives with her, she doesn’t live with it”. As the week I spent in that hospital went on, I came to understand what she meant by that.

Eventually I was able to go to sleep, it was a peaceful sleep interrupted only by people periodically pricking my finger to check the progress of my BG improvement. I recall as I drifted off, I felt found, I felt empowered…I was feeling hope again!

 

Brief Update: Over the last 15 years, I have become a leading expert in my own Diabetes. I could not have done that without the support of the medical teams I saw once I was moved onto Insulin Injections. There have been different NHS medical teams involved along the way, and through engaging with each member of those teams; over time I have built healthy, mutually respecting, knowledge sharing relationships with the people who’re working with me to manage my Diabetes. I will write in more detail about this in future posts, but realising the responsibility of sharing my experiences, I wanted to include that through seeking help and advice the correct way, it is possible to have the experience of Diagnosis that we would all hope for in that situation. Mine is a cautionary tale in the hope that it will not be anyone else’s.

 

 

Diabetes UK is a useful resource for information about all types of Diabetes.

If you are struggling with any form of depression, or have been affected by reading my post, Samaritans are a wonderful support, which can also be done via email. Your GP should also be able to provide support and counselling where asked for.