A perfect appointment?

So I had my first diabetes appointment at Kings College Hospital (London) last week and here's a little summary of how it went in my latest Diabetes Times Article. Enjoy!

Laura xx

Seeing Beyond Diabetic Retinopathy

According to Time hop, five years ago today was a very important moment in my life, although at that time I couldn’t see past the fear and uncertainty I was facing. I had come to a dead end and I couldn’t see my future ahead of me...

Continue reading my column at The Diabetes Times.

Laura/Ninjabetic x 

Diabetes Care - What Works

**Disclaimer** This blog is about methods that work for me and my diabetes, in my clinic setting, with the team that provides my care. We all have very different care, funding, time, management techniques, preferences etc, so this blog is from my personal experience and musings.

I’m conscious that when I’m asked to present at conferences, training sessions, lectures or write for journals and other publications, many of the requests I receive are about what went wrong with my diabetes and my care. When I deliver a presentation I always ensure that whoever is listening understands that what happened was in my past and is not my present or future. A great deal has changed in my T1D care over the last 4 years and I have a lot to be thankful for... (cont) 

Creating new T1 Diabetes models of care

The weekend just gone was very special for me and one that I will remember as the first time that I have ever felt truly positive about change in Type 1 Diabetes care. 

I was invited to attend an inaugural meeting in which patients with T1D, carers, Health Care Professionals (HCPs) and commissioners would come together to develop ideas to improve the care that patients receive throughout the UK. It was an honour to be asked and to be amongst some of the best in the world of diabetes... (cont) 

My week of diabetes

Diabetes is tough

I was prepared for clinic yesterday. I knew what I wanted to say and how I wanted to say it. I had planned to have a serious talk about my diabetes control and management, an honest and open discussion that would provide insight into how I could work with my consultant to get to where I wanted, and needed, to be. I had rehearsed it over and over in my head the night before and in my head the outcomes had been good.

As I sat in the waiting room I flipped my phone over and over in my hands, looking at the new art work on the walls. For that brief moment I felt calm and composed, soaking up the vibrant colours as I felt my heart beat slow down. When I was called in by my DSN I realised I wouldn’t be seeing my consultant that day. No problem – My DSN was always kind, understanding and never judgemental. I was in good hands.

I started to talk. I admitted to letting things slip, pointed out my mistakes and gave my own suggestions for I could rectify them. I was asked how I knew things had slipped, and I realised I didn’t. We tried to get blood for a HbA1c – it didn’t happen. I sat sobbing, as always, whilst the nurse tried to reach a vein before it moved. I felt selfish as I walked back through the busy waiting room. Why should I be crying when every one of these patients is going through the same (if not more) as I am. Why should they see my tear stained face as they sit, probably feeling anxious themselves, waiting for their turn. How selfish of me.

The tears didn’t stop. “Is it the blood test or something else?” I was asked. Soon I was crying harder. I talked and talked, letting everything come out. What I wasn’t doing, what I was doing, why I was choosing to make those decisions, why I’m scared, what my future looked like, what’s stopping me from asking for help. I was asked what I wanted to do next. I didn’t want to do anything. I didn’t want to set any goals, plan for the future or create any expectations. I just wanted someone, somewhere, to be aware for when I am ready. I left my DSNs office and in the corridor were a group of consultants, amongst them was my consultant. I looked at him with my mascara stained eyes and then looked at the floor. One of the things I hate most about diabetes is that it makes me feel I’ve let him down. People will say this is a silly but it’s how I feel.

Later that night I had a text. “Everything ok? Clinic looked tough?”

Everything’s not ok but clinic isn’t tough. Clinic is a safe place, it does its job and more. It’s diabetes that’s tough. 

Ninjabetic x 

Low carb and diabetes. A success?

Recently I had great news from my consultant... 

"Your HbA1c is 7.9%" 

"So you can send that data to the CCG then? Does that mean I can keep my pump? Will my trial be over from now? Do I need to do anything else?"

I'm sure I asked many more questions, just to be sure, but a letter came through my post box this week confirming that Iain the pump will be remaining firmly by my side (although according to the letter my a1c is 6.3% I think this is a typo). 

Success!! Or was it??

At the back of my mind is a nagging thought... When I was advised that my A1c needed to come down further I changed to a low carbohydrate diet. I was anxious that I would lose my pump and from hearing of other people's experiences I thought this would do the job. It did...

Sitting in my appointment my consultant leaned back in his chair and asked; "What's your secret? I've never seen your blood sugars like this before" and for the first time in 2 years he looked at his computer screen and said that he wasn't going to make any changes.

I told him that I'd changed to a low carbohydrate diet... I waited for his reaction... I didn't think this would go down particularly well. However he was supportive that I had made a choice and that, for now, it seemed to be working in my favour. The pump was clearly doing a great job as my blood sugars were always within my target of 5-10mmol/l. My basal rates were perfect throughout the day and night and I'd had no hypos at all... Good old Iain the pump. 

"Do you think you can keep this up? How is it making you feel?" My consultant probed a little further.

I knew what he was getting at. I'm sure from his side if the office I looked awful. I recall barely being able to stay awake during the appointment... and I knew I couldn't keep it up. 

"I'm so tired and I have no energy. I'm struggling to concentrate and my memory is terrible at the moment." I told him, feeling grateful that he'd asked.

Not only that but it was affecting people around me as well; I wouldn't eat the same food as my partner, my mum would offer to cook me dinner but I would turn it down, I cancelled nights out with friends if they were going out for meals, I avoided going to the pub because alcohol would play those wicked games on my levels, I even tried get out of going to my works Christmas party because we were having a three course meal that would be loaded with carbs. I knew that people were worrying and I didn't blame them... The big dark circles under my eyes were a give away. 

I agreed with my consultant that if I was to go back to eating carbs I would ease myself back in gently to save me from having those big bouncing high blood sugars. And that's what I did... I gradually introduced carbs back into my diet. Even on Christmas Day I was careful not to get too excited and eat everything in sight (though I wanted to).

Unfortunately since re-introducing carbs back into my diet my blood sugars have soared, my weight has increased and as a result of both, my mood has dropped. I carb count, I use the multiwave and extended bolus functions on my pump, I test before I eat, I take my insulin 20 minutes before eating, I test after I eat, I try injecting to see if that makes a difference, I have a range of insulin:carb ratios to use throughout the day that have been adjusted time and time again... I still can't seem to get my blood sugars under control when I eat. 

Occasionally I have a splattering of "good" days, but this is very occasional. When I look back over my data the highs are so glaringly obvious that my heart sinks a little as I know that it must be something I'm doing wrong, I just don't know what that something is. 

Now I'm toying with the idea of low carb again. I desperately don't want to, especially as I'm starting a 7 week placement from next week, but thinking about my next A1c and knowing that each day the result is creeping up is becoming incredibly frustrating. 

Pump it up!!

Hi! My name’s Laura and it’s been 2 years since my last DKA!

As strange as this may sound, staying out of A&E for two years is quite an achievement for me! If I turned up now I bet none of the staff would say; “Oh you’re back again!” or recognise my face. Often I felt like a part of the furniture. I even knew how to disable the annoying beep on the sliding scale machines.

Although I’m proud of myself for all I have achieved so far, my blood sugars still aren’t where they should be and this is having a huge knock on effect, physically and emotionally.

Despite numerous changes to my insulin regime, CGM loans, regular and lengthy appointments with my (very patient) consultant and a diabetes educational programme, I’m not getting any further towards good control – In fact my results show that I’m going to opposite way!

I knew diabetes wouldn’t be easy but for months now it has been a time consuming, energy draining, unresponsive  pain in the… pancreas!

My a1c has crept up - My frustrations have also crept up with it (can you tell?)

Hypos have become a regular occurrence - In the last 30 days 15% of my blood glucose readings were hypos.  Weight management is distracting and affecting me… even losing a few pounds is an impossible task.

It’s been almost 11 years since my diagnosis and still I regularly wake up feeling like I’ve not slept for weeks. I worry about falling off the diabetes wagon wheel and getting crushed by complications. I still feel faint at the sight of injecting myself… the bruises injections leave on my legs and stomach.

So soon I will start my six month insulin pump trial and hopefully this will be the start of getting me back. I desperately want to feel like me again… I want to be the bouncy, carefree, energetic ninja that I know is inside me! I don’t want to feel that I’m taking one step forward and two steps back anymore… I just want to keep stepping forwards.

Bring on team pump!!!! :)

Ninjabetic x

The Diabetes UK Professional Conference - Meet the Professionals

This week I attended the Diabetes UK Professional Conference which was held in Manchester. I was invited there as a member of the Diabetes UK Young Leaders Action Group to give a talk about social media and how it has helped me change my diabetes for the better. I was also there as Ninjabetic (a diabetes advocate) and as myself (someone who’s fast approaching 11 years with Type 1 diabetes).

 

I had two intentions while I was at the conference:

 

Firstly I wanted to get across the message that social media has been the most powerful tool in getting me on track with my diabetes.

 

Secondly I wanted to gain an insight into the professional world of diabetes, to hear what happens in meetings, behind closed doors and away from the patients.

 

The latter was very easy to do as no one knew that I was a patient, other than the few who recognised me from twitter pictures. I sat in talks about depression and best practice; I listened to speeches that included research, data analysis, trials and studies… The majority of it was new to me, and the majority of it impressed me.

 

Because so much information is kept away from the patients it was a real eye opener to sit and listen to consultants, nurses and managers talking about the issues that are discussed by patients on social media every day. Being able to listen to health care professionals was an inspiring and captivating experience. It was also very motivating to find that there was the same passion behind their voices as I read in people’s tweets or Facebook comments. There was a lot of willing to think outside the box and to reach outside of the comfort zone. I learnt a great deal from this side of the conference & I feel that other patients would greatly benefit from experiencing similar.

 

When it came to my talk about social media I knew that it would be very different to the talks that had been given throughout the rest of the conference. I started by saying that I didn’t have fancy statistics and charts, that I didn’t have any data or tables to prove that social media has helped me. The only evidence that I had was right there in front of them... it was me.

 

A few minutes before the talk I’d bumped into my old consultant who had looked after me through my nine non-compliant years. As I looked around the crowd I saw him sat quietly in the audience listening to everything that was being said, and it was a comfort to know that he was there to support me and to see how far I’d come.

 

I explained my journey and referred to the destructive years that I’d had prior to taking care of my diabetes. I explained what Ninjabetic was and what the Diabetes Online Community gave to myself and others. I finished by saying that one simple suggestion to start using social media to interact with others could be the turning point for patients. I wanted to emphasise that this free tool could help patients engage with their diabetes and be a huge benefit to their management.

I’d like to think that I was able to reach a few of the people who were sat in the audience, that I may have left an impression on those HCPs that I didn't know. If only one of them suggests the use of social media to a patient then I would know that I’d done a good job that day.

 

I admit that the support I had from the Diabetes Online Community before during and after the talk was overwhelming compared to the response from the audience. If I’d received anywhere near the reaction or support from the audience that I had from the patients and carers on twitter then maybe I wouldn’t have felt so disheartened when the talk was over.

So what did I personally take away from the whole experience? Positives and negatives... as I’d expected.

The same conversations are happening… conversations that excite us and spark debate amongst us! Conversations that could lead to great things for the future of diabetes care. However what stood out the most for me is that both patients and Health Care Professionals are discussing the same topics… they just aren’t coming together to do so in the way that they should be.

 

Communication is key.

 

Ninjabetic

My diabetes smile...

Yesterday was a hugely positive and enjoyable day for me. Not because I had a excellent run of blood glucose readings, or because I didn’t bruise myself with a needle. Not because I didn’t have a hypo or need to think about what I was eating. No… It was because for over an hour in my diabetes clinic I saw cheerful faces, heard welcoming and attentive voices, and felt I nothing but enthusiasm and motivation while I was there.

Firstly my dietician came and chatted to me while I was waiting for my appointment. She thanked me for answering a few questions for a diabetes newsletter that is sent out to health care professionals. She’d already thanked me a number of times via email, but the fact that she stopped and took time to chat to me in person (when I’m sure she was very busy) meant a great deal to me.

Secondly I saw other young people in the clinic! Real life young people - not like the ones you see on the front of diabetes leaflets, but people who still had all of their limbs, and were smiling too… always a good sign when you’re in a hospital! Then whilst I was sat in my consultant’s office the DSN who ran my education course (JIGSAW) popped her head round the door to say hi and comment on my hair. The fact that she’d noticed I’d changed my hair made me smile because it showed she was thinking about me… me and not my diabetes, me and not my hospital number, me and not my a1c result.

Next up was my consultant who spent over an hour with me; listening to me talk about my obstacles, concerns, frustrations, achievements etc. An hour is a long time for an appointment, but in the last 1.5 years I’ve never had an appointment that’s been less than an hour long! I thought about what he could have gotten done apart from listening to me rattle on, but he sat and focused on me. He even laughed at my awful jokes!

In that hour he reviewed my blood glucose readings from the past 90 days, set me up with a CGM (as promised) for a week to assess night time hypos, talked to me about the process of getting an insulin pump, talked me through my test results and even discussed a persistent problem (unrelated to diabetes) that I’ve had for 4 years which my GP, sadly, hasn’t been successful in treating.

I’m pleased that my consultant's recognise that 10-15 minutes isn’t long enough for me to get to where I need to be. I know that I won’t always need such long appointments, however I am confident that should I ever need more they will be there for me. 

I left the hospital with another appointment booked for 2 weeks time on a day and time that suited me. Then I thought to myself about how lucky I am to have such a dedicated and supportive team who have the tools to help me with my diabetes management.

I hear stories every day about people who can’t see any member of their diabetes team if they have problems, need to take days off work just for one  appointment, don’t have access to CGMs and won’t be funded for insulin pumps. Unfortunately that list goes on and the people who suffer at the end of the day are the patients. They lose faith in the system and just have to… get by.

This truly makes me appreciate what I’ve got, because I know that come September I won’t be seen at this hospital anymore and I’m already starting to fear that move. I’ve seen that one of my previous consultants from the same hospital has posted a blog that he’s written about Utopian care in the diabetes department. Based on what I saw yesterday and the support I’ve had over the past 1.5 years I can definitely say that from my point of view… the diabetes team at Queen Alexandra hospital, Portsmouth, is doing all they can to win the fight for Utopian care.

I hope that other diabetes teams take notice… and that soon everyone can walk away from an appointment with a smile.

 

Ninjabetic x

What a difference two years makes....

After Hannah and I were asked to speak at the Diabetes UK Professional Conference in March this year, it really hit home how much has happened in the last 2 years. Looking back I can’t believe where I am today and how I got here.

In January 2011 I’d had diabetes for 9 years. Diagnosed at the age of 16 I didn’t know anyone who had diabetes. I didn’t know what it was, what it meant or how it could affect me. It was a completely new world to me… a world that scared me. I thought it would take away my independence, my friends, my future… and myself.

For nine years I refused anything and everything to do with my diabetes. Injections, blood glucose testing, HbA1c tests, appointments with health care professionals… I pretended I didn’t have diabetes… though I knew it was always lurking in the shadows, waiting to catch up with me.

 

2 years ago my HbA1c was around 15 and that was the lowest it had ever been.

2 years ago I was in A&E again with DKA (diabetic ketoacidosis).

2 years ago I was diagnosed with stage 4 retinopathy and told I would lose my sight.

2 years ago I’d never met anyone else with diabetes.

2 years ago I regretted every single day that I hadn’t looked after myself and my diabetes.

 

But no more!

Today my HbA1c is 7.8

Today it has been 20 months since my last admission with DKA.

Today my retinopathy has halted in my left eye and is slowing in my right.

Today I’ve met amazing and inspiring people who have diabetes.

Today I still regret every single mistake that I made… but I hope others can learn from them.

“A dead end can never be a one way street; you can always turn around and take another road.”

It’s not easy… if it was then I wouldn’t have ignored it for such a long time. But for me, anything that I do on a daily basis for my diabetes has now become second nature. I barely think when I’m reaching into my bag for my blood glucose meter. I don’t flinch when I see a needle going into my skin anymore. Carb counting has become easier now that apps are available at the touch of a button. Appointments are something that I look forward to, because I get so much out of them. I lap up the information that I’m given by my consultant instead of just smiling and nodding like I used to. I ask questions constantly, I challenge methods of treatment and changes to my regime because I realise now just how precious my health is.

Now that I my health and my life back I want to make every option and opportunity work for me if I feel it’s right.

 

On top of daily diabetes management I study Monday - Friday, volunteer, work long evening and weekend shifts and involve myself with as many diabetes projects as I can… conferences, events, meetings, more volunteering, research projects, writing etc. Then I look at other people who also do so much on top of their daily diabetes lives and it makes me smile to think of what can be achieved and how diabetes doesn’t hold people back. It’s definitely worth the work and it really does pay off.

This blog is to demonstrate to anyone who is struggling that they can accept their diabetes and find a positive and healthy way to manage it. There is always a way out, there are always people to help and guide us, and there is always a light at the end of the tunnel. If I can do it then I think anyone can!

Hannah's story....

on the 26^th November I got an early Christmas present. For a long time me and Laura (aka ninjabetic) had been asking , ok more like annoying, our leader at diabetes uk to be allowed to attend the diabetes uk professional conference in March . on the 26^th Alex came back with some even better news - we were being invited to speak at it! So on the 14^th march me Alex and Laura will be speaking to hopefully a number of hcp about our work as young leaders and the use of social media. Frankly I’m a little scared about this but it did make me realise how far I’ve come in the past 2 years with some sheer determination, some great friends and a pretty awesome (and very patient) diabetes team.

2 years ago this month I was at rock bottom with my diabetes and self-confidence I was sat in the hospital with my a1c at 10.5 % I was on a very slippery slope with my diabetes. The way I was going I would have had severe complications by my 20s and wouldn’t of made my 40^th . I was doing maybe one bloodcount a day, was skipping injections and the injections I was doing I was guessing the dose of. All the locums I’d had previously had written me off as non compliant and didn’t even bother trying to get through to me .I’d had several scary hypos but nothing would get through to me every time my doctor or nurse would try to convince me to do things properly it would go in one ear and straight out the other. Then I got told if I didn’t sort myself out I wouldn’t make my 40^th suddenly the reality hit me that I needed to take care of my diabetes

2 years later I’m a young leader for diabetes uk mentoring teens and annoying , sorry advising , doctors on trying to improve care for type 1 whilst studying for my a levels in the hopes of being a children’s nurse. 2 years later I’ve met some of the most amazing friends I could of wished for and been given opportunities I could never of imagined when I was rebelling. i confess I don’t work anywhere near as hard as Laura does on ninjabetic because my blog was never set up to be a support site (I love that teens will come and talk to me though!) it was set up to provide a very unsugarcoated account of what it’s like to live with type 1 as a teenager, the good parts and the bad. 2 years on from my a1c of 10.5 im on an insulin pump testing  seven times a day with an average bg of 7.8 (just after exams it will get better) and with less hypos.

I’ve already been told that my team will be on the front row and also my pump rep.the fight for the insulin pump was something that took nearly 2 years and was so so worth the fight. I went from having to be completely obsessive over my diabetes to actually being able to relax a bit. It’s not perfect I can still have phases where I have 3 or 4 hypos a day or sometimes be hypo for up to 3 hours.  The pump gave me my life back and that may sound like an over exaggeration but it really isn’t for me. Before the pump I was spending every minute trying to control my volatile bloodcounts the pump has let me be a teen again.

4 years ago when I first heard about the professional conference I dreamt that I could speak at it speak about what its really like to be a teenager with type 1. I never thought I’d actually reach that dream , at the time it seemed so unrealistic  but with the help of diabetes uk I am gonna reach that goal. 

Every day is a diabetes school day

The lead up to Christmas, as always, is a hectic time. There’s so much to think about, organise, buy and prepare, and I always admire those people who do it with a smile on their face, never complaining and keeping up the Christmas spirit.  

The last two months were tough for me for a lot of different reasons. I was unwell for a few weeks which was the reason for me being away from blogging and tweeting for a while. It’s hard to find the energy when unwell and a rest can make all the difference.

Most of us know what it’s like to be ill with diabetes. It’s hard to just bounce back and recover fully or quickly. Blood sugars fluctuate, insulin doesn’t work as well as it usually does, frustrations are felt when checking blood sugars and seeing that yet again a dose of insulin hasn’t worked the way it should. Even taking extra insulin sometimes doesn’t make any difference and this just contributes to stress levels, and in turn, more messy readings!

Then there’s the worry about fluctuating blood sugars or running constantly high or low. 

“What is this doing to me that I can’t see?” “How will my next a1c improve when I can’t get at a level that I want for weeks on end?”

Then on top of that and at the back of my mind was; “Christmas is coming… food, drink, excitement, food, drink, excitement…” Surely this wouldn’t make my levels any better? So what did I do? I went to the #doc (diabetes online community) for help. On returning to twitter a few weeks ago I found that there was a 24/7 diabetes tweet chat using the hashtag #dailydtalk so I jumped in with a question; “Any advice for managing diabetes at xmas – overlapping food & insulin always makes me hypo”

Without fail I had a bunch of different responses from people sharing advice tips and stories about how they control their blood sugars to prevent hypos. I noted everything and thought of ways that I could adapt it to my day and regime.

Next I emailed my dietitian (the more info to prevent hypos the better) and asked the same question. As always I had a reply within an hour giving me tips and advice on how I could adjust to the change in eating and injecting.

Armed with lots of useful information and feeling fully recovered from the past few weeks I was ready to dive head first into Christmas day!

My first hypo was at 7am – I quickly treated it but had one of those horrible lingering headaches which I knew wouldn’t leave me for the rest of the day. No problem though, I didn’t expect to get it 100% right today or anywhere near that in fact as I’m never 100% right!

I had another hypo after lunch and another in the evening.

I wasn’t annoyed with myself for having hypos… I was still standing, smiling and laughing, I was just left feeling very tired from them. I’d taken all of the advice that was given to me on board, and even with a brilliant meter which tells me everything I need to know about my insulin and carb intake I still had three hypos.

Considering the fact that this time last year I probably would have tested my blood sugars once a month (if that), may have only had 1 injection a day (or sometimes none) out of the 5 I should have had, and had no idea what carb counting was, I think I did pretty darn well yesterday. On the day that people with diabetes want to kick back and relax we still need to stop and think about what we’re doing/eating.

It’s not a day off but a day to let ourselves off. To accept that things will go a bit haywire and to know we aren’t able to have perfect blood sugars all of the time, but that doesn’t mean we’re bad at our diabetes management.

I always say that every day’s a school day with diabetes and I think I’ll be saying that until my last day! I will never be an A* student in my condition because that’s not how it works. I will never get perfect results and I would never expect anyone else to either, because I know how hard that is. I’m not an expert and I don’t pretend to be, people who talk to me can see that and I think they respect that. I’m realistic and accepting in my diabetes, I’ve lived with it for 11 years and I know my body inside out now. I’m sure most people feel the same whether they have diabetes or help someone who does.  

We should all be proud of what we do on a daily basis. We work as a pancreas 24/7 and that takes a lot of effort, education and guts! I’m proud of myself… and I respect admire and support anyone else who is brave enough to take on diabetes.

Ninjabetic x

November - diabetes awareness month

November really has been an amazing Diabetes month! I haven't stopped at all and I've loved every minute of it, as I'm sure we all have!

Firstly I attended another Young Leaders meeting at Diabetes UK head quarters. This was our third meeting and I can really feel the progress that's being made. It's clear that a lot of work has been put in since we last met at the Big Event during the summer. This hard work is down to the wonderful Alex and Matt who keep us in the loop and keep us on our toes. The group will officially kick off next year and I'm sure that we will be making a big splash in the world of diabetes... for now though... my lips are sealed about our plans.

Next on my diabetes agenda was to write two guest blogs. One was for Timesulin about what World Diabetes Day means to me and why I feel it is so important. I was really pleased when I was asked to do this, I know that Timesulin has made a big difference to many people's diabetes self management, also the team are absolutely lovely and do a lot to raise awareness for diabetes! I love to give back to the people who I feel really and truly want to help people with their diabetes, and I get this feeling every time I speak to one of their team.

Blog number two was for Diabeto device who are the makers of my favourite little blue birdie diabetes accessory. I regularly interact with one of the creators and was really happy when he asked me to write for them. I was told that I could choose any diabetes topic I liked ,so I went with Blood Glucose Monitors. I chose my Accu-check Expert as I'd just found out that my HbA1c result had improved and I feel that I owe a lot to my meter.

Next up was a biggie for me! I was honoured to be asked by Diabetes UK if I would like to write about my diagnosis for the Independent which would be published on World Diabetes Day!

What an amazing opportunity to have a bigger voice to raise awareness for Type 1 diabetes! The article that I wrote was in support of the Diabetes UK 4ts campaign which is something that is very close to my heart. After a traumatic diagnosis I'll do anything I can to prevent that from happening to someone else. This is why I support their campaign and why I included it in the article... the message is simple but so strong. This campaign wasn't just for World Diabetes Day or for November, but it's for every day until a cure has been found!

Finally I travelled to Animas head quarters on World Diabetes Day to meet with their team and take part in talks and focus groups. I met with my lovely friend @Superbetic_T1 and the mysterious @grumpy_pumper (who I caught smiling at least twice throughout the day!) We listened to inspirational talks from teams of Type 1s who had swum the channel and @Superbetic_T1 told us about how he's recently climbed Mount Kilimanjaro despite only being diagnosed a few months before!

At lunch I thrilled (bored really) Fred Gill with stories of why I want to become a Diabetes Specialist Nurse. I was completely unaware of who he was and was a little embarrassed when I found out that he rows for Great Britain. He was actually there to give us a talk about his experience of diagnosis and adapting, but sadly he had to listen to me nattering away before hand!

The whole animas team came together at the end of the day for a walk around the offices, all dressed in blue, to celebrate World Diabetes Day together. At the end, Simon (regional sales manager for animas), took the mic (for what I was hoping was the start of a karaoke session) and thanked us all for our support!

It was a good day and every time I checked twitter or facebook I saw the words World Diabetes Day plastered everywhere. I could tell that people were making a massive difference in any way that I could... articles, post card exchanges, photos, events, talks, fundraising, blogs... anything and everything!

May the amazing work support and awareness carry on into the future until the cure is found!

50 Shades Of DKA

I'm sure that many people have read or heard of the novel 50 Shades Of Grey... If you haven't then here's a very short summary (close your eyes if you don't want to know what happens).

Girl meets guy... guy is dangerous for girl... girl can see the danger but doesn't know how to stop... girl keeps going back for more...

When I think about DKA (diabetic ketoacidosis) that is how I see my experience, a dangerous pattern which sucked me in time and time again. DKA broke me so many times and in so many ways, and after I fixed myself and picked myself back up I would allow my diabetes to chip away at me until I was too weak to fight it again.

For those who haven't experienced or don't know what DKA is here's a short blurb to explain more...

"Diabetic Ketoacidosis occurs when the body cannot use sugar (glucose) as a fuel source because there is little or no insulin. Fat is used as fuel instead. As fats are broken down, acids called ketones build up in the blood. In high levels, ketones are poisonous.

The signs and symptoms of DKA are: Deep rapid breathing, dry mouth, flushed face, nausea and vomiting, abdominal pain, decreased appetite, decreased consciousness, dulled senses, frequent urination and increased thirst."

Recently a fellow ninjabetic, Danie, experienced DKA for the first time since being diagnoses 15 years ago. Danie had been ill for a while and unfortunately this had lead to her being admitted to hospital with DKA. I remembered that we had briefly spoken 1-2 months ago about what it felt like to go through it and I hoped that she never would. I felt instant guilt at the fact that Danie had been through this terrible experience when she had taken measures to prevent it, yet I had openly exposed myself to it on a number of occasions.

In previous blogs I have explained that it was a 6 monthly occurrence for me... a bit of a routine in my diabetes life. The agonising pains and confusion, being unable to breathe or even walk were all quickly forgotten about within a few short weeks and the build up would start over again.

So the DKA was that guy... aggressive unstable and menacing. My problem was that I didn't know how to escape the vicious circle that I seemed to be trapped in, I didn't know how to stop. My consultants would visit me while I was in hospital and ask why it had happened. "I forgot to take my insulin" I would tell them innocently. "I promise I won't do it again" hoping that my big puppy dog eyes would work. They would then make me an appointment a few days later to discuss ways of preventing it and I would sit in that appointment completely numb with an invisible barrier around myself.

For me accepting help from someone who didn't understand and showing that I needed to lean on someone else was frightening! So frightening that I would put myself in a position which could have cost me my life.

The thing about DKA is that it isn't only the "there and then" that affects a person, it's the weeks and months after that creep up slowly and sometimes silently which need to be looked out for. It's all very well having an appointment after an admission but what happens to the person who feels unable to connect with their HCPs? What happens when GP and clinic appointments start to feel generic? What happens when the advice given seems to be turned out from a book with no feeling or empathy behind it? Is that when people start unknowingly and unwillingly going back for more?

I realise that most people who experience DKA do not purposely subject themselves to it. Was I naive and ignorant to go through it so many times? Was I selfish to add myself to the NHS statistics? Yes but at the same time was I scared and withdrawn because I thought that no one could help me? Did I feel like a lost cause because between those appointments I felt that I was alone and was struggling to cope? Yes again! There are always reasons for why these things happen and just because I wasn't shouting it from the rooftops and symptoms weren't always visible, that doesn't mean that it doesn't exist and shouldn't be addressed.

When my consultant suggested I start a diabetes forum I thought it would be great for me to share my experiences with other people and to prevent them from making the same mistakes that I have, but there was nothing that could be done for me. I had accepted that I was destined for another DKA in 6 months time but maybe I could stop others from having that same destiny. After going through 9 years of hospital admissions I feel like I've found the missing piece to the puzzle! I had no idea that the diabetes online community would give me so much hope and positivity.

Recently another Ninjabetic, Hannah, told me that she'd had a dream that I was taken into hospital with DKA. I thought back to when that had last happened and realised that it was 15 months ago. When I spoke to Danie about her admission I said that it would be interesting to compare our outpatient care following an admission. Thinking about it has made me come to the conclusion that combined with the medical advice that I recieve,  speaking to people who completely understand is one of the most effective outpatient treatments that I could wish for. Every day that I'm speaking to people with diabetes and their famlies is another step away from putting my body and mind through another DKA and I can hopefully do the same for others.

I had an email from a young girl with type 1 diabetes recently saying that she wished I could be there to hold her hand in appointments because even though she is surrounded by HCPs constantly she still feels very alone and misunderstood. I know what she means, I really do, and I plan to email this blog to her as I know how she enjoys the 50 Shades trilogy... but also to remind her that after the second instalment (50 Shades Darker) comes the finale... 50 Shades Freed.

Ninjabetic