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

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.

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.

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

16. On the Sixth, Seventh and Eighth Days of Christmas…

6th-day-of-xmas…I woke up, went to get out of bed and felt a tug; I managed to catch it before it fell on the floor. Fortunately being 5ft 1″ with 80cm tubing attached at the waist meant even if it had fallen on the floor, it shouldn’t have ripped my cannula out. However that instinct to protect the little box on the end of the tube is necessary, any little crack can cause havoc now that I rely on this as my lifeline and an issue on day 2 (my first full day) of pumping would be very unfortunate.

I had the best sleep I’d had since Thursday and I was both surprised and incredibly grateful for it. I felt a sense of calm that I’d been longing to feel although it was mixed in with a small element of panic; perhaps only natural to feel this way when you’re a fembot?!  Another new experience planned for today, first burrito and meeting more of Matt’s friends. As a slightly different start to my day, the first thing I did this morning wasn’t to check my phone, so imagine how incredible it felt, for someone who’s been somewhat isolated in her diabetes journey, to see a text from my man, with a link to burrito carb info.   I’d hoped I’d be able to work out the carb info as we ordered the food so I could pre bolus before we took the food to D & G’s house; I had a tiny anxiety about doing this in front of people I’d never met before, especially when you’re trying to make a good impression; but it was all good. D & G are incredibly welcoming people and not a single one of Matt’s friends have been anything other than supportive – I think Matt got more good luck texts to pass on to me on pumpstart day than I got directly to my phone – so I shouldn’t have expected anything different I suppose.

I had a massive spike after the food, which I corrected for although I did experience a few persistent hypos’ later on in the evening. The degludec clearly hasn’t yet left my system. Thank God for temp basals – they were my saviour at this point in my pumpstart journey. It was also great to hear from my pump buddy Kate this morning, we talked about how people at work would probably ask her what her pump was, my suggestions for responses are as follows;

 “it’s so the FBI know where I am” or “they won’t let me out without it” or “it helps me adjust to earths atmosphere”.

What amusing responses have you given to questions about your pump?

___________

Another epic sleep and another 6am start. 7th-day-of-xmasThis pump malarky isn’t a friend to my lie ins, but that’s OK; today is set change day – my first time without supervision. Because I woke up with a high BG I just had some tea for breakfast, whilst I sipped my cuppa and waited for the correction bolus to kick in I read through the medtronic quick start booklet to remind myself of the steps needed for a successful set change.

Again, I had my pump buddy’s support and she mine. We discussed the best time of day to do it to fit in with our schedules, whilst bearing in mind that immediately before bed isn’t a sensible option. I had an “original blonde” moment here, I can laugh at it now and I’ll hope you’ll join me. So, because I needed to keep giving correction boluses, I had in my mind that I couldn’t do a set change for 4 hours after a correction. DOH!! So because of my daftness my planned morning set change turned into a mid afternoon set change. Fortunately, it went off without a hitch. I think the toughest part was selecting where to place the new site, but knowing that I could change it again on Friday meant I wasn’t too panicked if it wasn’t the easiest site.

A few more hypos today, but I’ve started to spot them coming more and use a temporary basal rate to try and avoid them. I’ve become accustomed to having some crackers instead of hitting the haribo. Because our brains don’t know we have Diabetes, the way I maintain my hypo symptoms is to always treat with fast acting glucose at 4.2 or below, that way my body will crave glucose and hopefully I won’t compromise my hypo awareness. If I’m above that level then I’ll usually try to bring my next meal forward or have some non fast acting carbs (I LOVE Munchy Seeds Honey seeds – also my bedtime snack of choice if I’m below bedtime target), and include a negative correction when I bolus. It’s all so much easier on the pump because the bolus wizard does that calculation for you. I was worried that using the pump would alter my hypo and hyper symptoms, not the case at all and the beauty of the pump is that I seem to have more control over avoiding hypo’s altogether because I can reduce insulin if I need to. I’m more invested in proactively managing my Diabetes more, it’s an empowering change to reactively managing it.

I also saw my GP today to go through the prescriptions I’d need now, I was asked if the pen cartridges and needles etc could be removed from my repeats now;

**If you’re starting Insulin Pump Therapy you will still need to carry your fast acting insulin around with you in case of high BG’s, a failed set or an issue with your pump. PLEASE DO NOT LET YOUR GP REMOVE THESE FROM YOUR REPEAT PRESCRIPTION.**

Repeats sorted, I then talked my GP through how my pump works. I appreciate that my GP is honest with me when something related to my Diabetes is beyond the scope of his knowledge, but I’m even more grateful that he takes the opportunity to learn. I know there will come a time when I need to change my GP, and I will honestly miss the way we work together to manage my health. If the staff at your GP practice don’t know much about your pump or the way you manage your Diabetes, why not offer to give them a talk; if nothing else it will help you realise how much you actually know.
(I’m in no way suggesting this should replace formal education for Drs and nurses, but it can assist them in learning about patient care and how diabetes varies so widely).

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8th-day-of-xmasToday I’m feeling brave….and or foolish! Time for Christmas shopping!! Having chatted to Brian a lot, I took into account that I’d be a lot more physically active and no doubt super stressed with all the slow moving people spending their money and struggling to move under the weight of their shopping. I put on a temporary basal of a 30% reduction for 12 hours, I also took the train – it allowed a few moments of relaxation before I became a short woman amongst a sea of shoppers.

I’ll admit to feeling a pang of nerves about the crowds of people, what if someone hit my pump or if I got it caught on something and ripped the cannula out…I put those thoughts to the back of my mind and vowed to just avoid getting too close to people. Once I got into town the first stop ended up being the M&S cafe, I needed to treat a low and I also needed to make a list of who I was buying presents for…I could feel the stress bubbling already.

After traipsing around for a few hours, salvation in the form of my best friend S arrived! This was the first time I’d seen her since becoming a fembot and I was excited to share this with her, it also meant sitting down and drinking coffee (or tea in my case). The first thing I did was show S how, having my pump clipped to the middle of my bra; I could look like Iron Man, as a DC and Marvel fan that was so amusing to her. Once we got over the superhero discussions, I showed S my cannula site and talked her through how the pump works. It was interesting that she’d assumed I would have a permanent ‘port’ to attach the pump to, which I guess comes from our friend who has dialysis. It made me realise how misunderstood Insulin Pump Therapy still is, maybe not even just amongst the Type Zero’s. It also made me realise how much I’ve learned in the last few days, so I gave myself a little credit and mentally gave myself a pat on the back….my shoulder impingement means I can’t quite reach.

 

Thank You!

Nx

 

All images are copyright Discombobulated Diabetic and Google Images.

 

Exquisite Humans – Part 1

Inspired by a pancreatically challenged nerd (Diabetes Geek); and having spent some time reflecting on the humans who have an impact on my life in some way; I’m going to write a series of blogs about these people; who can either be described as Saints (for putting up with me) or somewhat loopy (for putting up with me).

The first, EXQUISITE human is the very reason I finally started the Discombobulated Diabetic, and she probably doesn’t even realise it. (I do also have to credit a couple of others, I haven’t forgotten, and I never will). Many conversations about writing and what to write about were had, but I can say with absolute certainty, that without reading the 30 odd posts written by mon ami; I would not have had the courage to allow my fingers to dance across my keyboard.

Who is this person you ask? Well grab a brew and let me enlighten you.

Introducing, Anna Louise Swabey.

Anna & Ruby

Pictured with Ruby in 2012

Anna stumbled into our family somewhere in the early millennium. We’re a mostly inclusive family and we do love “new blood”, well I just adored Anna immediately, deciding that I would simply have to adopt her so that this bright, funny, kind, considerate young lady could be in my world forever. She fit in with our madness pretty quickly and added to it where others would shy away. There is not a single member of our family that would say they don’t adore Anna, and I would lay down my life on the fact that this is a true statement for anyone that’s had the opportunity to meet her. Anna, always able to hold her own against my cheeky uncles and join in with the various antics of hilarity that would ensue when the clan gathered, endeared herself to us more and more over time. I talk about us being an inclusive family, but Anna always helped me feel more included. With my depression and GAD, I sometimes find it really difficult to even go to family events – as with any family, not everyone gets along or understands each other all the time – knowing I’d have my buddy there almost always ensured my attendance.

The day my little sister got married wasn’t the easiest day for me. It was bound to be emotional anyway, but having recently come out of a relationship with the man I thought I was going to have babies and forever with, on top of everyone asking me if I was bothered about not being a bridesmaid (for 3 years!!!), feeling a little bit on the outside looking in and not forgetting the fear of the inevitable “when are you going to get married then?” questions; it was always going to be a day where my anxiety and depression would be at battle with me. It was clear there was a group of lovelies in my family determined that I was going to have a good time; Anna played a massive part in that. She would tell me off when I changed out of my ridiculously high heels into ballet pumps; there’s an irony that as a Type 1 diabetic, I was literally up and down all night! She would physically drag me up on the dance floor and keep me up there when it looked like I was heading for a darkened corner, she kept me hydrated and assisted me in maintaining my blood glucose levels (Vodka AND juice), for the duration. Given the amount of Vodka and juice and Kir Royale’s consumed, plus the amount of time I spent outside getting “air” (read: avoiding), it can’t be a surprise that my memory of the wedding reception at least is somewhat hazy; but I haven’t forgotten the effort Anna (and some other quality humans) went to, to ensure I not only had a good time, but felt less alone than I would have done without them on that day. It was the most fantastic wedding, and a blessing to have people look out for me too. As a result, my memories of that day will always be intrinsically linked to my friendship with Anna.

 

This is where a lot of people would begin the next paragraph with, “unfortunately…”;  not me, instead I choose: Such is life, that we lost touch. Anna had finished university and was forging her career and settling herself on a new path. I missed her, I thought of her often and hoped that once she was where she needed to be, our paths would once again cross, but that until then she would know I was always there for her, regardless of the time that passed.

Our paths did cross again, on 16th March 2015. I’d been thinking about Anna and wondering what she was up to in the days leading up to this date, I couldn’t work out why and I equally couldn’t stop the feeling I was meant to be in touch with her, it felt like I was physically being drawn in her direction. I periodically have that happen, quite often I’ll wonder about The Corrs for example, and whether they’re still making music (the combination of loving to sing and Irish heritage mean I love The Corrs, like the swedes apparently love a snowy sauna), within weeks they’ll be promoting a new album…it’s a little bit peculiar. Anyway, back to Anna, I’d seen my parents that day and they had shared some news about her. In that moment, everything fell into place, I understood the pull and the thoughts. The moment I got home I looked Anna up. I found her blog. What I’d been told was true. My heart broke and simultaneously filled with pride.

You see, Anna is dying.

 

The pride came because, despite being told she has a Grade 3 Glioma, Anaplastic Astrocytoma Brain Tumour, and then being told that she had anything from a month to 3 years to live, Anna has made the courageous decision to share each step of her journey, Anna has made the decision to defy her prognosis, she is not taking this lying down and has thrown herself into raising awareness and funds for Brain Tumour Research Campaign. This vibrant young woman, in the face of death is flipping it the bird and saying “Nope, not yet, I have life to do!” I spent a year reading Anna’s blog, devouring each post and using lots of these wonderful words strung together to share her news and encourage (beg) people to read and share her story and donate money to her justgiving page.

Then, earlier this year Anna did something that made me certain that I want to be like her when I grow up (it’s good to have something to aspire to, even as the older person). Anna went to Parliament to speak to MPs as part of a group of 20, following the successful petition started by Maria Lester to get an increase in funding for Brain Tumour Research. To me, almost the pinnacle of her achievements so far in this journey, is that she has actively contributed to affecting change. One day, someone will have the chance to survive a brain tumour like Anna’s, all thanks in part, to this inspirational group of people getting funding increased, more research done, more awareness raised and therefor, symptoms caught early enough to do something about it. Those future people may never know that the names of the people who made that possible include Anna, until they do some research. They will then undoubtedly feel the way us Type 1’s do about Frederick Banting – genuinely grateful that someone cared enough to give time, thought and resources to change something because it wasn’t working.

you-must-be-the-change-you-wish-to-see-in-the-world-68

Anna visiting Parliament made me realise that each one of us is capable of using our voices, individually and collectively, to affect change and make a positive impact and contribution to the world in which we live. It doesn’t have to be particularly big, you just have to do it and be proud that you did it. I coined a phrase, “When life gives you lemons, do an Anna”. In May 2001, Life gave me a mammoth lemon – Diabetes. 2016 marked 15 years since that bittersweet gift. So using my new found understanding of what “leaving a mark” meant and a determination that if nothing else, Anna would know she affected a change in my life at least, I decided that I was going to begin blogging, no more excuses; the time was now! Since then I’ve found a home in a community of fellow PWD’s, I’ve learnt more about my Diabetes than I realised was possible to learn, found out that I’m not too terrible at engaging with people, I’m an OK writer; but above all, I am proud. I’ve made some amazing new friends, friends I know will read Anna’s story and support me in spreading the word, but I am proud that within those new friends, using the PMA that Anna Louise Swabey inspires; I have affected change, and left a mark.

Anna, I can never thank you enough for being so simply fabulous. I am truly honoured to count you amongst my Exquisite Humans, you’re in excellent company; as you will find out. But for now, know that your influence has left an indelible footprint across the path of my life.

Keep celebrating your Exquisite Humans!

For more information about Anna’s story
Visit her blog: www.annaswabey.wordpress.com
On twitter: @braintumourblog
On Facebook: Inside My Head
Or her justgiving page https://www.justgiving.com/fundraising/InsideMyHead

More information about the work of Brain Tumour Research Campaign can be found at http://www.wayahead-btrc.org

 

If you have been affected by reading this story, please share it to help spread awareness.

You can also see the Trailer for this post here: https://youtu.be/SBahRcTvRks

 

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.