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

18. My Body Positivity Tag….

As you will see below, the truly wonderful Big Purple Duck decided to have a shot at helping us women to realise how incredible our bodies are in the wake of a “large nipple” article. I told her how proud I am of her for doing this and how empowered I felt…..I volunteered to do my own….here it is…..(eek)

Firstly, this has not been easy in any way shape or form. I am someone who has struggled with her body image for more years than I’ve had Diabetes – at that point, I began seeing my body as even more broken and useless. That alone makes finding things I love about my body hard enough, and at every body part I examined I came up with a negative. Then I challenged those thoughts and came up with a list that surprised even me at points.

  1. My weight. I’m shocked at this one, I’m grossly overweight and have been trying not to be for most of my life. I have literal breakdowns sometimes when trying to choose clothes, find sites for my infusion sets or places to wear my pump. If I lost weight, the issues I have with my back and hips wouldn’t be as immobilising as they sometimes are but… I’m really attached to my insulation. You see almost 16 years ago, the extra weight I carry literally saved my life! I desperately want to lose weight, but I have a fear that it means losing my safety net. This is not a healthy way of thinking and I’m working very hard to punch through that mental block.
  2. My cross-bite. It makes my smile a little wonky and my mouth seems uneven when I talk which makes me feel insecure, but it also means my smile is unique and always genuine.
  3. The body language I use. I’ve worked really hard at connecting the person I wanted to be (the person I was and am) with the person others made me feel I had to be. For so long I had hyper-awareness of my body language because “it gives me away” as if it was a bad thing to be authentic. Now, I’m not ashamed that my body language may say I disagree with you, or I no longer wish to be part of this conversation or that I’m gonna hug you any second (or that I need you to hug me any second). I love that my body instinctively does this.
  4. **Trigger Warning** I love my feet. They’re small, my toes are in proportion and I can paint my toenails all sorts of crazy colours. My feet also mean I can explore new places with my dog, boyfriend or niece (and other people), discovering something new or seeing something for the first time that I’ve driven past and not seen before, makes me smile. It means I’m mobile and can freely get out and about, I can dance in the kitchen with Matt, I can make a silly noise everytime my niece touches my feet to make her laugh, plus Matt’s nephew says they don’t smell – so that’s always a winner!!
  5. My eyes. They’re a nice almond shape which I’ve inherited from the Irish side of my family, they’re hazel although they tend to look more green and they look good with no makeup or with makeup. They’re the one feature on my face I proudly highlight without any hesitation, even if that’s just “putting my eyebrows on” to make sure they’re framed. My eyes reflect my emotions in a really beautiful way, they sparkle when I’m happy and they sparkle when I’ve cried. They get very red and bloodshot when I’m tired which, in that moment before I go to bed to rest them; reminds me that I’ve lived that day.
    In addition to all of this, my eyes are the most important tool in me learning to look at my body as a whole and realise how beautiful and strong and healthy it is. 

Why not take a look at your own body and share what you love about it. I hope this has inspired you, dear reader, to challenge some of the negative beliefs you’ve formed about your body image. Let’s spread the Body Positivity and stand together instead of tearing each other down.

 

splash-park-happy

Here’s my picture. I love this picture because it shows every part of my body that I would usually prefer to hide, but on this day I walked around in the park in a strapless top and tankini bottoms, paddling in the river with my niece watching the ducks and taking full advantage of the splash park in the sunshine. On this day my body enabled me to make some incredible memories with Little P, on this day I did not care if people were looking at me and thinking I shouldn’t be wearing that, on this day the only thing that mattered were the smiles on our faces.

 

This post is a little out of my comfort zone, but I feel it is called for. This week I read an article in The Guardian (link here) reporting (hilariously, do go read it) a ‘trend for smaller nipples’. You don’t need me to tell you about the unrealistic expectations our society has of women’s bodies […]

via Body Positivity: Tag — bigpurpleduck

17. On the 9th, 10th & 11th days of Christmas Insulin pumping gave to me….

…More new learning opportunities.

Day nine of my pump journey brings us to Friday 9th December. 9th-day-of-xmasToday was second set change day and I was going to be catching up with my DSN on the phone (a necessity of my care being in London and not Oxford and Imperial are so open to different methods of communicating if needed), to discuss how my first few days have gone. On Monday C had asked us to send her our log of BG results, boluses etc at the end of each day so I was looking forward to beginning to make some adjustments that would make a difference to the issues that brought me to IPT.

Before the call with C, I wanted to make sure I did my set change so I could feedback on 2 experiences. This time was both funny and painful…..and took 4 reservoirs, 3 infusion sets and all the will I could muster to carry on and not reach for my pens. The first issue I found was that I couldn’t draw up the insulin into the reservoir without air bubbles, I’d suddenly become super cack handed and I got really cross with myself because I was trying to rush it. So I took several deep breaths and tried again and on the 4th attempt I got a reservoir with no air bubbles, ready to be attached to the infusion set. The next step once the reservoir is in the pump and attached to the tubing and cannula is to insert the infusion set into me. The first one I drew back before I’d peeled off the backing of the dressing, I tried to unclip the cannula so that I could peel it off, but the darn thing wasn’t interested in cooperating! Onto the second one, I remembered to peel the backing off but I forgot to remove the needle guard. With the way things are going, of course I only realised this after I’d inserted the infusion set! In this instance it hurt like hell, but it didn’t “go in”. Third time was a charm, I remembered to remove both the backing and the needle guard.

The call with C went well, we made a few tweaks which I wasn’t sure of, but went with it with the knowledge that there’s much fine tuning to be done over the coming months. The biggest thing I took away from my conversation with C was that I acknowledged how much hard work I’ve put into keeping myself safe this past week. There were hypos and hypers and I dealt with them, avoiding hypo assistance and ketones altogether. In those moments I’d despaired and I’d forgotten to give myself a pat on the back for coming out the other side and C almost forced me realise it. I’d keep that praise with me for the coming weeks.

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10th-day-of-xmasWithout going into too much detail about today’s pumpstart first, I’m instead going to direct you to some blogs that’ve been of interest in this particular experience.

A link to Ninjabetic’s article for Diabetes Times

A brief guide from Camille Peri on Web MD

Awesome vlog from Jen Grieves

The only thing I’ll add, is that when you look into the subject of Netflix and chilling or Amazon and hot water bottling; whatever you kids are calling it these days, with Diabetes in mind, turn to the Diabetes Online Community on Social Media (Twitter in particular – they love an opportunity for innuendo over there). When you google the subject you get instantly directed to a multitude of pieces about the complications associated with Diabetes and Sex and that’s not what I’m highlighting here, I’m highlighting that it’s entirely possible to enjoy sex, to be safe in terms of your Diabetes even if you do have a cannula and tubing to consider.

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Day 11, a glorious winter Sunday. 11th-day-of-xmas The frost on the ground melts away by mid morning, but there’s something incredibly festive about seeing it look as if outside has had a dusting of snow whilst you sip your morning cuppa in the warmth of your living room. It was so obviously a perfect day to take Matt and Ruby to explore the town I live in and in the absence of flip flop weather, I do love a reason to get the wellies on!!

So off we went, on my first big walk since pumpstart began. I loaded up my walking coat with my BG tester, test strip pot, lancet and very importantly – a couple of tubes of dextrose tabs (although Ruby would argue the most important thing in my pocket were her tennis balls). It was a lovely walk, I felt the need to test a couple of times and I certainly had to take some dextrose tabs to prevent a hypo. All in all though – a very successful walk.

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Castle Meadows  – Plenty of castle ruins dotted about for those into Saxon history

I have to admit to having moments of struggling since pumpstart, as you’ll see more extensively on Day 12. But for now I’m looking back at some pretty incredible moments over the beginning of a month I thought I’d be desperate to see the back of, instead I’m cherishing it……even the not so pleasant bits.

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

5. Down we go……

There have been times, in everyone’s lives, I’m sure when you’ve felt a sadness or frustration, a sense of not knowing who you are or if you’re getting it right. Moments where the possibility of not being in that moment, or in that life, were a tempting prospect. For most people experiencing low moods, the recovery is quick, instantaneous almost. You dust yourself off, tell yourself not to be so daft and that’s it, you’re all better. That whole episode probably took up less than a few hours of your day, but what if you couldn’t just dust yourself off and move on, what if you were held hostage to that low mood, what if you lived under the constant fear that even on a good day it could strike, and it may never leave this time, you may not get the respite you desperately crave where your every waking moment isn’t controlled by a negative alternative to every thought you have, even if it’s one filled with joy!

Take a moment now and picture how you might feel spending every day under the weight of a wish not to be here…….

Weight of Depression

All too often society lauds people who don’t “suffer with depression” as being strong and healthy and successful. I’m sorry, but take yourself back to the task I gave you above, take yourself to the lowest point you’ve ever reached in your life, even if there was an obvious reason for it or even if it was for just a moment. Once you’re there, add into that a feeling of having no control, no voice, no power to change the way you’re feeling; alone or with someone’s help. Now think about how much strength you need to ask for help or even just to go about your day to day life when you’re feeling like that. For people experiencing chronic or acute depression, whether episodic or continuous, they need to display that strength every day to get through even the most menial of tasks, they draw from that strength to get through each hour of the day, they use that strength to fight to stay alive. Depression isn’t a choice you make, it’s a cruel, indiscriminate bully that consumes the very core of a person.

I know from my own experience of depression, that I tend to withdraw from almost everything and everyone around me; in my mind, it’s what I need to do to survive. None of the actions of the affected are aimed at a specific person or situation and unfortunately, in my case, episodes like this leave me unable to clarify that or give warning, particularly as I don’t always have any warning myself. What would be helpful is just a gentle reminder that there is support there if I need it, when we’re low we so often forget exactly who we can rely on, trust or turn to. Being given space, and getting to know the person well enough to recognise that they’re in a dark place and to be able to talk to them about it without fear or stigma when they’re back in the light, can mean together you find ways to help each other through it. Trust that your loved one lives with this on a daily basis and they know how to manage themselves, but that if it is right to do so they will find the right place to get help. You may not know about these displays of superhuman strength, we’re not accustomed to screaming our successes from the rooftops, but what you will know is that your loved one is OK today! Ultimately, the most helpful thing would be for society to recognise the strength we have as people affected by depression, and to remind us of that.

 

A couple of years ago, I had a difficult year for various reasons not just associated with my depression, I think it was a birthday card that a very dear friend wrote, “Don’t ever let anyone tell you that you don’t have the strength of superwoman!” I still have that card, but even if I didn’t, I carry those words with me everywhere. It meant so much that someone else could see that in me at a time when I struggled to see it in myself and I’m so utterly grateful that S took the time to write it down to share with me. To her, I imagine that’s nothing; to me it’s overwhelmingly huge. I’ve been fortunate enough to have some time and resources to work really hard at finding tools and techniques to manage my depression, which I’ll be talking about in the future, but not everyone is as fortunate or able. Next time someone you know seems low, or even if you know they suffer with depression; tell them how much you admire their strength. They may tell you to f*%k off in the moment, but it’ll stick with them, and when that person is up to it, maybe you’ll be the one they talk to about the experience.

Depression and Diabetes are very similar in so many ways; both have a physical impact as well as a mental one, neither one is automatically perceived by the naked eye, both require more self-management than is often acknowledged – especially by those with it, both can consume you and both will be with you for life! Both will affect each other, but we can affect both.

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I didn’t write this post to educate you about the types of depression or their causes, MindSamaritans or your local NHS/GP can give you comprehensive information and support about that. No, what I do hope I can achieve in this post, is to give insight into how we can support the people around us, the ones we love who are often at the mercy of this merciless disease. I hope it will start a conversation, I hope it will contribute to removing the stigma from Mental Health issues. I dream of a day where telling someone you have a mental health issue gets a compassionate, supportive reaction that leads to easily accessible and thorough care/therapy.

When I write about depression or mental illness, it will always be about my own experiences from the perspective of both someone who’s been through it and as someone who has loved people going through it. Just like Diabetes, Depression is a different experience for everyone; whether that’s the sufferer, those around them or the professionals they interact with. It is an individual journey and no two beginning, middle or ends are ever the same, to some, the end may be in the middle and the beginning at the end. What I write here is not intended as advice.

Images courtesy of Google Images.

2. An Insidious Infancy

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

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

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

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

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

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

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

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

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

 

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

 

 

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

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

1. Difficult Birth of a Diabetic

To clarify, a metaphorical birth rather than an actual birth, when I consider the mental scars, the pain and the difficulties; I could go for an episiotomy without anaesthetic instead, I believe kids are more rewarding. I jest, but on a more serious note, (so early on…don’t worry, I’m seldom consistently serious); no one should ever have the diagnosis experience that I did. Let me set the scene…..

*If you’ve ever seen Austin Powers, at this moment picture his psychedelic scene changing dance*

It was 7th May 2001, a Monday I believe and after being ill for a number of weeks I took myself off to my GP surgery. It was a small village practice, the doctors there had pretty much seen me since birth. They’d treated me for Hepatitis (the childhood one) when everyone in my primary school seemed to drop like flies from it. I’d received many prescriptions for the liquid antibiotics that they claimed tasted like banana from them – they lied, bananas tasted nothing like that liquid, they were less yellow too! Most of the usual childhood ills had been treated and diagnosed by a member of staff at this small village surgery, where you’d always bump into someone you knew, at one time or another. Having been so ill, I wasn’t going in without my suspicions about what was wrong, albeit with a lingering hope that I wasn’t very good at self diagnosis!

Sitting in the waiting room, acutely aware of the lunch box possibly overly full with urine discreetly stowed away in my handbag, my mind raced and fought to be empty of thoughts. Thoughts about how I felt emotionally and physically, thoughts about the future facing me if my suspicions were fact, thoughts of fear, of sadness, of not knowing. I was overwhelmed by the variety of what was going through my head and the emotional rollercoaster it all had me on, I was petrified and hopeful at the same time. And I’d only been in the waiting room for 5 minutes. I have a tendency to be early for most appointments, which was a foolish move this day. We didn’t have mobile phones that could amuse or distract you for hours; in those days you had snake…if you were lucky enough to have a Nokia, not that you could use it in a surgery waiting room though; back then there was a belief that the mobile signals interfered with medical equipment. The selection of magazines was wanting, most of them having had pages ripped out where the “wannabe chefs” of the village wanted the free recipes, so all I had were my thoughts. After what felt like hours, my name flashed up in red old school LCD letters, and off I went to the room in the right hand corner.

I explained my symptoms to my GP (I’ll do a seperate post about symptoms), then handed over the lunchbox that would be immediately disposed of once it’s contents had been tested. She took a dip stick out of the tub and proceeded to immerse one end of it into my wee for about 5 seconds. FIVE measly seconds, count it out now: 1….2….3….4….5! That’s it, that’s all it took to confirm my life was about to change. *Sidebar; it should’ve taken A LOT longer!!! Following the innocuous dip test the following words spilled from my GP’s mouth……. “Looks like you have a touch of Diabetes. Pop into the waiting room and I’ll just speak to the hospital, it’s probably only Type 2 so you won’t need to inject”. I went straight to my car, took out my, what was, back then, very funky Nokia with the interchangeable fascias and called my Mum and relayed this information. I can’t describe how I felt in that moment, had I not of been semi expecting it, I imagine I would’ve been bowled over in shock, grief, anxiety and howling tears that cause you to fight to breathe. Instead I seemed to take it quite calmly in that moment. I wish I could remember my Mother’s reaction and tell you how she felt, perhaps that could be a post down the line. 

I went back into the surgery and sat in the waiting room, my GP called me back in and handed me a couple of A4 sheets of paper about Type 2 Diabetes. She explained that she spoke to the local hospital and on the basis of my age, weight (yep, I’ve got some padding), lack of family history, they diagnosed me as a Type 2 Diabetic and sent me away with leaflets and the promise of a letter for an appointment down the line……4 months later, they were proved VERY wrong!!!

To be Continued………..

Diabetes UK are an invaluable resource for anyone affected by Diabetes, particularly the newly diagnosed.