32. Body Image and Wedding Dress Shopping

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

 

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

 

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

 

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

 

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

 

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

 

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

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

All images copyright Author and Kaleido

31. And so it begins…

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

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

 

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

 

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

 

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

 

 

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

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

All images copyright Author and Kaleido

30. My Fiancé and her T1D

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

 

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

 

 

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

 

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

 

Written By Matt – Fiancé to Niki & Dadda to Moomin

 

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

All images copyright Author and Kaleido

29. Why Kaleido

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

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

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

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

Nx

 

You can follow my Wedding/Kaleido journey here

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


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

All images copyright Author and Kaleido

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

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.

6. #Diabuddies

Within the Diabetes Online Community, I’ve recently discovered a sense of empathy, belonging and support; the like of which my 15 years with Diabetes has not experienced. It’s an alien feeling to have support en masse when you’re not used to getting it 1-2-1 regularly, but it’s also a feeling I’ve found myself increasingly grateful for.

Recent weeks spent dealing with the “Diabolicals”; an affectionate term for some of the difficulties we Type 1’s face regularly, have shown me how important the knowledge, experiences and views of others who’ve been through it also, directly or indirectly; can be to someone dealing with Type 1 Diabetes alone day to day. It’s a reminder that we’re never in fact, alone, that if we ask for help, our phones will be pinging with notifications like David Cameron’s press secretary’s phone after the “pig debacle”

The beauty of the DOC is that it’s mutually supportive, people don’t give to receive and when someone says Thank You that really means something. Sometimes you get support even when you’re not expecting it, mentioning you’re battling a hypo, trying a new food, trying some new Diabetes Tech, or just simply feeling like you’re winning that day, there is always at least one person that will be your cheerleader! We all need to feel we have a cheerleader in our lives every now and then, and with the link between depression and diabetes, being part of a community, any community can make the biggest difference. Of course it is wise to remember that, as with any group of people there will be times when not everyone agrees, or perhaps the general mood of the community can be affected by the few. But that’s life, no group of people can get along without a conflict in views once in a while, and my experience of those moments have been to learn from it and perhaps connect with people I wouldn’t have previously.

Not all healthcare professionals recognise the positive impact peer support, face to face or online can make to someone with Diabetes. I would recommend to anyone, newly diagnosed or a veteran, and I include parents, partners, siblings or friends who play an active role in their loved ones Diabetes; to seek out peer support in your area and also online. It’s the best and most responsive specific encyclopaedia in existence. If there isn’t a peer support group in your area, or one that you feel works for you, why not set up one of your own? You could even connect with other groups in the area occasionally, and create special events. It all works towards building our community and increasing awareness of Type 1.

There are so many of your fellow PWD’s out there ready to remind you that you are not alone, keep an eye out for them and say hello; it won’t only make a difference to your emotional wellbeing, it could make the biggest difference to you Diabetes Self Management as well.

So for now….Welcome!

Some sites to checkout:

This is not an exhaustive list of charities/organisations that support those with Diabetes, however I have personally interacted with all of them and I can safely say; they’re awesome!!

All images courtesy of Google Images.

 

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

3. Diabetes Blog Week 2016 – Day 3: Language

Unfortunately my plan to blog each day of this wonderful event has gone somewhat awry as life interferes.Today however, I have taken a weight of my shoulders, a load off my feet and will not be allowing the fact that it is Hump Day stop me writing!

Todays topic is Language and Diabetes, I’ve thought about this from a few angles and can honestly say that, aside from a previous employer always insisting on calling me “A Person With Diabetes”; which got on my last nerve because she rarely seemed to use my name, I’ve not given a lot of thought to the amount of language that is a direct result of my Diabetes. Delving deeper into this now though, I’m actually far more conscious of it that I initially thought.

I am guilty of making some of the obvious “mistakes”, I do refer to myself as a Diabetic more often than perhaps I should. I believe I’ve desensitised the term in this context for my own wellbeing, I don’t define myself by it and perhaps foolishly assume that others won’t either. Now I see that for others, I am perpetuating a misuse of the word. But by the same breath, I am a big believer in desensitising words that can have negative impacts. When my Dad was diagnosed with Cancer, I wanted to remove the power from that word in the hope that the amount I would hear it, say it or see it over the coming months would not have the same devastating level of impact that it did when I first heard it in relation to my Dad. I would walk my dog muttering it, repeatedly under my breath; “Cancer, Cancer, Cancer”. I believe this is also true of some of the terminology associated with Diabetes.

The psychology of language has always interested me, and with My Diabetes (which is the most common way I refer to it), it’s about me taking ownership of it because that is where I feel I’m most in control. Control, it’s a word with such negative connotations to so many, but for me it’s an essential component of my diabetes health that has to be considered every day. The word control for me symbolises good health, hope for a low A1C result and a stable blood glucose log each day. Control for me means that I’m as far as possible from the scary side of my Diabetes, I’ve given the word power in order to empower me; which can only have positive connotations.

Some Diabetes related terminology can also have a different impact based on the context in which it’s used. I recall seeing a practice nurse at a GP surgery once, she had the results of my HbA1C – I think it was 9 or 8 (at that point no one had ever explained to me what the results meant and I’d not had a lot of the essential education that most people have. I suspect this nurse hadn’t either), she said something along the lines of “if you don’t bring this down you’ll have to have a pump”. I remember exactly how that made me feel, I felt like to have a pump was a punishment and an inconvenience to the medical professionals. Then recently, I was attending a carbohydrate education course run by the hospital I attend and a pump was desired so heavily by my peers. Instantly I realised that for some, a pump is seen as the ultimate in treatment, 5* luxury spa hotel compared to self catering camping if you will. I appreciate that due to the expense, in many areas of the UK a pump is prioritised according to need and that need will often be assessed as people who have some difficulty achieving a certain level of control for numerous reasons, but they’re not being punished, they’re not an inconvenience to their medical professionals; they’re being helped, empowered and given an opportunity to be well!

I completely understand and appreciate the need to have some “preferred language” in association with our Diabetes, but I am mindful of becoming so bogged down in correctness and acronyms that individuals get lost. As with everything in life, with or without Diabetes, I think language is about finding a balance and respecting an individuals wishes, but more importantly; I believe it’s about giving the right type of power to key words and phrases.