Tuesday, 30 June 2015

Hid-In insulin pump panties review

As some of you who follow me on twitter may have seen, I've been tweeting about my pants recently. Not because I've gone slightly mad or have become a fashion blogger (I'm still all about the betes!), but because I was sent a pair of Hid-In insulin pump pants to try out!

The lovely Katie from Hid-In posted on facebook recently that she needed a few ladies to try out her new product in exchange for user feedback, and luckily I saw the post in time. What's also lucky is that my bum is the right size for the pants Katie had to give away :) I've had my pants for a week now and I've been able to wear them twice (I'm wearing them right now!). Before anyone says it, it's never okay to turn them inside out to get an extra day's wear out of them... that's just wrong. 

You may have seen in one of my youtube videos that I've used one of Katie's products before (the Hid-In Multiway Body Band) and I absolutely loved it, which was why I was excited to try this new product. I know it's only a pair of pants, but when you're wearing certain clothes and the only place to hide your portable pancreas is in the side of your bra, it's quite nice to have an extra option. As I've mentioned in the past, insulin pumps aren't very easy to hide inside clothing and it takes a lot of practice and adjusting to master the art of not having a rectangle shaped bulge. Before I got the pants I did wonder if that bulge was now going to be showing in a place where women don't usually bulge, but I was pleasantly surprised at the lack of pant bulge on display. I think I've used the word bulge far too much for one blog... 

So this is the little envelope that popped through my letter box last week and I got far too excited knowing that there was another diabetes tester inside. I love that Katie adds heart stickers to the back of the envelopes - It feels like a treat has just arrived!

Inside was a letter from Katie saying hello and thanks for trying the product. Katie always writes a bit about her experience with diabetes as well and why she makes Hid-In products which is a nice touch. It's good to know that the person who has designed the product has done it because they have had similar problems and and wanted to find the solution. 

The product itself is really nice - I like the detail around the edge, it's not too fussy but is still feminine. The material is very soft but also feels quite strong. I don't know about you ladies but I'm fed up with elastic that loses it's stretch (#womensproblems) but these seem very well made and look like they'll last a decent amount of time. The best bit is that they fit really well - not too big, not too small and they're really comfortable! I have quite big hips but these hug me in all the right places :)

This is the pocket - the main selling point to the product. The pocket is on the inside at the front and is more than wide enough to fit my Accu-Chek Combo insulin pump inside. I've used the Medtronic MiniMed 640G pump recently which is longer and wider than the Combo and I think it would also fit inside quite easily. As a test to see what else I could stash in there I also managed to fit in a lip-gloss and my chunky Channel blusher! I attempted to fit my mobile in as well but I was pushing my luck with that one. Obviously I didn't leave them in there... it was purely for experimenting!

In terms of taking insulin, I'm lucky in that my pump has blue-tooth which means that I can use my blood glucose meter to tell my pump to deliver my insulin. This means that wherever I've stashed my pump, I don't need to get it out in order to take my insulin. I know that not all insulin pumps have this function which would mean having to get the pump out of the pocket but I did manage to discreetly do this (again as an experiment) without anyone noticing! 

In terms of comfort I've had no problems at all. It did feel a little strange at first because I've never worn my pump in that position before but after an hour or so I got used to it. In terms of how visible the pump is, I tried the pants on with a few outfits and I went to Mr T for  some straight-to-the-point male advice (does my pump look big in this) and they passed the test! If I'm honest, when I ask him if any part of me looks big he knows better than to say yes, but I do trust him to tell me if my pump is showing. 

All in all I give this product a big thumbs up and 5 pink stars out of 5! Thank you Katie for making another great diabetes fashion product for us!

Ninjabetic x 

Check out Katie's website: hid-in.com

Thursday, 25 June 2015

Blog lovin'

I'm currently making my way back to Southsea after being in Cardiff delivering a presentation about blogging and diabetes. I presented during a paediatric diabetes study day and I'm really hoping that my experience of blogging will encourage the HCPs (Health Care Professionals) who attended to encourage their patients to give it a try. It seems that understanding social media is becoming more of a priority for diabetes professionals which pleases me a lot as it's a great way to engage patients in their care! In fact, social media seems to be increasingly popular amongst all health conditions and I think it's great that HCPs are taking the time to listen and learn from patients about how and why it helps them. My diabetes blogging story still seems fairly new to me, but three years in and it's growing stronger than I had ever imagined when I published my first blog post. 

You see I didn't really enter the world of diabetes until I started blogging about it, which seems like a strange way to 'get into' a health condition. I do like to be different though! I'd blogged for a while before I started this one, writing for Channel 4 and their comedy channel, e4, after my media degree. I've always enjoyed trying out new things and I've always embraced technology - it's never scared me, only ever intrigued me. I also adore writing and being creative and when I climb inside my own head anything is possible and getting those ideas onto paper is just another step towards making my dreams become my reality. Can you tell I'm a Pisces?

As I said, I didn't really enter the world of diabetes until I started to write about my experiences - that was 9 years into my diagnosis. It's pretty shocking, looking back, to think that I'd ignored my condition for such a long time, but I was in absolute denial about what I was going through. I didn't go through the stage of grief that many people experience when one of their vital organs starts to go a bit haywire, in my head nothing had changed, and I wanted to keep it that way. Out of sight, out of mind.

The turning point, and the stage when I finally accepted that my Islet cells were as useful as a chocolate tea pot, came when one of the consultants at my clinic, Partha (you guys know Partha, right? He has a blog too), found out that I blogged for channel 4 and suggested I started using social media to talk to local patients about diabetes. I'd never considered doing anything with diabetes other than ignoring it, I certainly didn't think that talking about it would make the slightest bit of difference... but I did love to write. I thought about it for a little while and danced around the idea of starting another blog, which eventually I did. I also love Marvel/DC comics/films etc and I'd always wanted to be a strong and powerful hero, someone that in reality I wasn't. I wanted nothing more than to escape the reality that I was living in... That reality, as you can imagine, was exhausting at times, due to me constantly hiding from and battling with my diabetes.

For a while I blogged anonymously, not here but on another site, talking to myself about diabetes and everything that came with it at the time. I didn't get a huge amount out of that but I soon created this blog which helped me to reach other people. That's when things really started to turn around and I didn't want to be anonymous any more. The biggest part of blogging, for me, is talking to others and hearing someone say "me too". That moment when someone relates to what you're saying and you realise you aren't alone in what you do and how you feel is an incredibly powerful feeling, almost as if I can finally accept that what I'm thinking/feeling is normal. Almost as if I'm finally giving myself permission to think/feel and not hide any more.

Blogging has also been incredibly therapeutic for me. After 9 long years of keeping all of my fears, worries and experiences bottled up inside, I finally realised there was a place to make sense of them... this blog. I soon found that spilling my thoughts on to a blank canvas and arranging them in a way that helps me to make sense and understand them has helped me to become much more in tune with the emotional side that comes with diabetes. I'm able to manage certain situations much better than before by spending time arranging my thoughts, reflecting on them and viewing them from different angles. I could never do that before I started blogging.

I have to say though, it's not all bright and shiny... Let's be realistic here. Blogging or putting yourself out there on any public platform does come with a few negatives. I've come up against internet 'trolls' who just love to criticise me in any way they can, people who go out of their way to try to upset me or try bring me down. It's just one of those things though. But turning a negative into a positive, this just builds me up even more. Haters gonna hate ;) The thing to do is not rise to it. I'm incredibly happy whilst I'm blogging and using any of my social media platforms... and that's all at to matters to me. The way I see it is it's called social media for a reason... Trolling isn't sociable. Simples. 

Back to the awesome side though,,, Blogging has also had perks that I never imagined could happen. I've somehow managed to rack up a lot of hits on my blog (though I think a large number of those are from my mum!) and from being noticed online I've been lucky enough to travel around the world, meeting people that I would never have met if I hadn't blogged. I've been given amazing opportunities that I'm very grateful for and some experience that I will never forget! I've made some incredible friends who keep me and others around them motivated and I also feel that I have quite a good relationship with my diabetes team because I have no secrets from them. I'm completely honest online and I'm aware that what I say in public can easily be seen by any of them, and that's cool with me. 

So that's my little blog about blogging, I guess I wrote it because the presentation made me realise just how powerful it can be and just how much it has helped me to turn my diabetes around. I know that I don't blog as much as I used to, but I'm working on it. I like to think of twitter as micro-blogging so follow my mine blogs at @ninjabetic1 - If you're considering giving it a go then I'd definitely recommend it! Start anonymously if that's what works for you, but see how it goes. It could be one of the best thing you've tried for your diabetes!

Ninjabetic x 

(Photos taken at the Abbott diabetes bloggers conference, Berlin - May 2015)

Monday, 8 June 2015

Blogging in Berlin

I had been eagerly awaiting the weekend just gone for what seems like forever and I'm sad to say that it has now finished (until next year I hope!). It was the perfect way to end my nursing placement... being flown to Berlin by the generous peeps at Abbott in order to spend a few days with fellow diabetes bloggers from across Europe. Our common goal for the weekend was to connect, to share our skills, to inspire and motivate one another to do more, to reach more people and to create a wider space in the world of the diabetes online community. 

The weekend started with a good old shopping trip! Sofia (from Sweden) and I arrived to Berlin quite early and we decided to do some sight-seeing which turned into us hitting the shops almost straight away and being very impressed with the fashion in Berlin. Sofia and I had only met an hour before-hand and I loved the way that we instantly connected due to having diabetes in common. 

One thing I love about being around other people with diabetes is that no matter who the person is of which language they speak, we can all understand each other as we speak the language of diabetes! This has never happened in any other aspect of my life and this is one of the things that I enjoy about having diabetes. It's like a secret code that only certain people understand. I love it when I can tell someone that I'm high without them thinking the worst! I love that people know what I mean when I talk about a bolus wizard or DKA. Having these people in my life makes me feel less alone. 

Next I went to my hotel to relax before the meet and greet that evening. I arrived in my hotel room to find that Abbott had created a goodie bag for us, containing food/drink from each of the countries that were attending. I loved this little touch! Then a knock on the door revealed the Hotel had supplied us with a delicious box of chocolates! The weekend was off to an amazing start! 

I have been lucky enough to meet a handful of the bloggers on my first social media trip in which I took part in a bloggers summit, again in Berlin. This time round I met so many new faces and people behind the twitter accounts that I speak with so often. It's always very strange to meet with people that you've spoken with countless times online, but it really helps to bring the diabetes online community to life!

With Kris (@diabeticbanana)

The weekend included some creative and engaging talks from various speakers. The aim, from what I saw/heard was to get us thinking about how we could enhance our social media presence/skills in order to connect with more people with diabetes. From experience, I know that amazing movements can arise from connecting with others in the diabetes online community, and after this weekend I have come away with plenty of ideas about how to keep connecting people in the world of diabetes. Not only patients but diabetes professionals too!

The venue that we were taken to for our meeting helped me to think outside the box. From the outside it looked like a run-down building that perhaps needed a wrecking ball taking to it. Inside however, was the most stunning and creative space which was soon filled with creative minds.

Our meeting venue - Frbrik 23

The sessions were different to any other diabetes/social media/blogger meeting that I have been, to in that they weren't all focused on diabetes, and as well as that they weren't all presented by people with diabetes. It was very refreshing to be able to think about social media and its possibilities without narrowing it down to a specific topic. That in itself helped me to form ideas about how diabetes care and support can be shaped in terms of social media use, in a way that everyone can relate too. 

We were invited to listen to sessions which included; building online communities, fashion with diabetes, turning a passion for social media into a profession and an instagram workshop, to name a few. 

Micro blogging/tweeting

I have to admit that I was sceptical about a few of the worshops. I thought that I knew what worked for me. what I liked and what people wanted. It turns out that I was wrong and after a few sessions I have been convinced to look at social media and its possibilities in different ways. Having co-founded the popular diabetes tweet chat, @OurDiabetes, as well as recently starting a local diabetes peer support group, @sweet_meets, I've been able to look at peer support in a fresh way and hopefully in a way that will benefit other patients, their families and health care professionals. There is much to do in the world of social media and diabetes!

Something that I did not expect to happen, and that I am grateful to Abbott for, is a new found love of food! In recent years, since being diagnosed with Type 1 diabetes and more recently with gastroparesis, my diet and the way that I look at food has gone downhill. I have recently started to loathe food due to the highs and lows it causes to my glucose levels. My average day in terms of food consists of the same food and drink, resulting in me rarely enjoying a meal. Food has become a part of a mind-numbingly boring routine. Thankfully though, Abbott didn't provide us with toast and cereal (which my usual diet consists of) but a delicious spread filled with fresh fruit, veg and meat which for the first time in years, I enjoyed! It has helped me to see my gastroparesis in a different way - before I felt I was doomed to a diet of blended fruit & veg but now I feel excited to experiment with new foods! So thank you to Abbott for that inadvertent little nudge in the right direction that I needed. 

So the weekend has come to an end and I'm sitting at home in sunny England wondering which direction I should go in next with regards diabetes and social media/blogging. One issue I have is time - I need to study and to support that I need to work which means I have even less time to get to where I would like to be in terms of social media and reaching more people. But this weekend has certainly shown me that when a group of people come together they can take on their common goal as a team, rather than individually taking all the strain. Hopefully this is only the start of a European bloggers movement!

And finally... I'll be giving away this unisex t-shirt (medium) is worth 67 euros on June 20th! All you need to do to enter my random proze draw is:

  • Follow me on twitter (@ninjabetic1) and RT the t-shirt picture OR
  • 'Like' my page on facebook (ninjabetics) and share the picture OR
  • Follow me on instagram (laura_ninjabetic) and favouried the picture

The wonderful creator at Anna PS designs clothing for people with diabetes to store their equipment in the clever side pockets (cgm reader, pump, glucose meter etc). 

Ninjabetic x 

Fellow European tweeters/bloggers/facebookers to look out for include;

Jen, Mel, Kris, Sue, GemmaAndrea, Sofia, Bastian, Oscar, Daniela, Matthijs, Francessca, Sarah, Linda, Hein, Patricia, Antje, Guillaume, Marcel, Sascha, Lisa, Maunela, Ilka and Finn

Disclosure: I have been sponsored by Abbott to attend the bloggers programme. Abbott has not asked me to tweet/post/blog about the programme. Views and opinions expressed are my own and not those of Abbotts. 

Friday, 22 May 2015

Guest Post - Diabetic and Proud

This is a guest post from the lovely Joe Griffiths (@VCP_Joe on twitter). Please share this with anyone who may like to read it and also give Joe and his funny stories/pictures a follow on twitter :)

Diabetic & Proud

I’m a huge Marvel nerd. No, seriously I love any kind of comic book movie or reference. The first thing I compared myself to when I was first diagnosed with my type 1 diabetes was the X-Men. I was a mutant of some sort. Not the coolest mutant, granted, but a mutant with something different about them when compared to another person.

I didn’t have bone claws, nor could I shoot red energy blasts from my eye balls when I removed my specs. Instead, I had an unquenchable thirst and a swollen bladder. Probably more Wee-Men than X-Men…

I went home from the hospital that day knowing that my body had changed. I knew I wasn’t quite right but now it was double confirmed why I was feeling so different. What would I do with these new powers then? Like any new mutant from the Marvel universe, you hide away and feel uncomfortable about your new-found abilities.

I wouldn’t talk to anyone about my diabetes. I felt embarrassed about getting my kit and my stomach out at the dinner table, always creeping off to the toilet to ‘shoot up’ like some kind of junkie. It sound’s ridiculous when looking back about it all now but it really did feel like my condition (mutant power) was something to be ashamed of.

Of course, with time I grew to understand and control my diabetes, to the point where I’m still learning new things on a weekly basis, 10 years down the line. I have the help of my health care specialist nurses and consultants for all the big and bulky stuff but there’s still that shadow looming over the emotional side of things.

Sticking with the X-Men theme here… like any lost and scared mutant, I needed mentoring. This is where Twitter takes on the guise of a bald man in a wheel chair. My Professor X was a whole community. The DOC (diabetic online community) to be precise. This band of brothers welcomed me with open arms; inviting me to take part in tweet-chats, networking events and ways to raise awareness for our condition.

Instead of shunning my powers, I embraced them. I added a simple ‘type 1 diabetic’ line into my Twitter profile and began conversations about hypos, hypers and what pumps to choose. I’ve never been very good at Twitter but since finding a reason to tweet, I’m more active than ever. Don’t drag your diabetes around with you, put it up front and make it part of your character.

I even managed to convince my boss to allow me to write an article for our website at Voucher Codes Pro. It was my first crack at raising awareness for diabetes. I felt like I owed something back to the DOC after they had been so accepting of me. With the help of the brightest bloggers and advocates from around the web, I put together something I was very proud of.

My name’s Joe Griffiths and I’m type 1 diabetic and proud.

Sunday, 26 April 2015

Final thoughts on the Medtronic MiniMed 640G with SmartGuard

Here are my final thoughts on the Medtronic MiniMed 640G insulin pump with EnLite sensors and SmartGuard low glucose suspend. Watch the video to see if I give it a thumbs up or thumbs down... It was a close call!!

Enjoy :)

Ninjabetic x

Nursing, Diabetes and Insulin Pumps

Here's a quick video about life as a student nurse with Type 1 diabetes and an insulin pump. 


Ninjabetic xx 

Saturday, 11 April 2015

How To: Wear an insulin pump

Here's a little video of me showing you how to wear an insulin pump with different outfits.


Ninjabetic x 

Monday, 6 April 2015

How To: Do a set change/cannula change and use an insulin pump

Here's a little video of me showing you how to do an insulin pump set/cannula change and how to use a pump for basal/bolus options.


Ninjabetic x 

Tuesday, 31 March 2015

Q&A session with the Diabetes Online Community #DOC

Another one of my little videos. This week I answer questions that were sent to me by poeple in the Diabetes Online Community (#doc).

Ninjabetic x 

Sunday, 29 March 2015

The unpredictable side of Gastroparesis and Diabetes Management

“I heard you”, Mr T said.

“What did you hear?” I asked.

“I heard you being sick again. Why were you sick?”

This morning I’d woken up feeling nauseous. I got out of bed, leaving Mr T asleep, and pottered around the house, tidying and chatting away to the degus. I took an anti-sickness tablet and made myself some ginger tea – someone had suggested drinking it when nausea sets in. Not long after the kettle had boiled I was in the bathroom bringing up last night’s dinner. I had eaten 12 hours ago yet there it was, clearly it had been sitting in my stomach overnight, not heading anywhere. I instantly felt better after emptying my stomach, brushed my teeth and went back to my ginger tea. It was a relief to have the undigested food out of me and the nausea settled quickly, but it wasn't healthy, I knew that, I worried about the damage that was being done after years of vomiting on and off. 

I checked the screen on my insulin pump and looked back over the CGM (continuous glucose monitoring) trace for the past 12 hours. I could see that my pump had suspended my insulin around 45 minutes after I had bolused for my evening meal – the pump does this when the CGM picks up that I’m heading for a hypo. This must have been because the insulin started working before the food had digested. Throughout the night I could see that my glucose levels were unusually flat, with no post meal rise at all. This wasn’t surprising now that I know my food didn’t really leave my stomach (or the majority of it anyway).

This, compared with other days, has been a relatively easy day. For the past few weeks since I’ve had the CGM and been able to see exactly what my glucose is doing, I’ve become increasingly frustrated and scared when seeing my glucose levels. I have lows not long after eating and highs much later, this is due to stomach emptying as described above. I have tried to adjust to this by taking my insulin after I have eaten and spreading the delivery out over an hour or so. Sometimes this is effective, sometimes it isn’t. My stomach will, at times, empty like it should, meaning that I then have a high followed by a low, due to taking insulin later.

It’s almost impossible to take insulin to cover food as I never know when or if my stomach will empty. How can I predict that? I can’t. It’s opening up a whole new world to me and along with that come more and more questions. How will I manage this when I don’t have CGM in 3 weeks time? What will my a1c be like? Will I be able to have an a1c that will be safe enough for me to have children? Will this cause my retinopathy to progress? Will this cause me to have further complications related to uncontrolled glucose levels?

Taking it each day as it comes seems to be the only option with something this unpredictable. I’ve started medication as prescribed and I’m self-managing as best I can from information I have found on the internet. I had always thought that I quite liked spontaneity, not planning ahead and seeing what the future brings. One thing I have learnt over the last three weeks is that when it comes to my health, this is the opposite of what I want. It’s frightening, it’s depressing and it’s still something that comes as a huge regret.  

Take care of your diabetes as much as you can, and hopefully it will take care of you.

Ninjabetic x 

Saturday, 21 March 2015

Boyfriend vs Insulin Pump

This week I interviewed (grilled) my other half about what he thinks of my insulin pump. 

Ninjabetic x 

Tuesday, 17 March 2015

It's complicated

I’ve written and re-written this blog so many times today. It has been a day of mixed emotions and with each of those came a different blog. I woke up and I read the letter that has caused these emotions over and over again, which lead to me writing an angry blog. I then became tearful as I looked in the fridge for something to eat, that lead me to write a slightly depressing blog. Now, as I sit at home, feeling hungry but once again not knowing what to eat, I’m just feeling incredibly confused.

Yesterday was the day I had been waiting for… I had waited 6 years for this letter to arrive and I knew what it was going to say, but that didn’t stop me from sobbing to myself all the way home. I have yet another diabetes complication.

You see when you’re diagnosed with a complication you tend to know that there’s a problem long before any health care professionals do. You know your body well enough to feel that something isn’t quite right, even if you can’t put your finger on what that might be. For me the tell tail signs were nausea, vomiting and abdominal pains, however these were intertwined with fatigue and fluctuating blood glucose levels. Six years ago when I started to experience these symptoms I knew very little about diabetes and delayed stomach emptying, in fact I don’t think I knew about it at all. Off I went to the professionals to look for advice, only to be told I was suffering from symptoms relating to stress. Back and forth I went for the next six years when the symptoms had caused me to take time off work, but eventually I gave in, knowing that my attempts to get to the bottom of what was wrong were falling on deaf ears.

I’m not going to lie, I’m feeling quite angry about this, not only angry but also let down and saddened. As many of the people reading this will understand it’s incredibly hard to trust others to look after us and we need to build relationships that are based on trust. Knowing that the trust I gave ended with me not being diagnosed when I should have is possibly the hardest part of all of this. That trust has now been taken back. It sounds strange but after a while I even convinced myself that I was making it up. If health care professionals couldn’t diagnose the problem then maybe there was nothing wrong… surely they must be right?

So I got by for those 6 years with my symptoms, however last year I went through 4 months of near constant daily vomiting. I would wake during the night and spend hours lying awake on the sofa, running back and forth to the bathroom bringing up undigested food. I would avoid leaving the house as often as I could and struggled my way through nursing placements working 14 hour shifts, determined not to let whatever it was bring me down. My other half and my family became increasingly worried – They knew that I was vomiting and in pain but there was nothing they could do because there was nothing I could do. I looked terribly pale (even more so than usual), I had no energy or enthusiasm and I tried to hide it from them as often as I could. It’s always easy to paint on a smile.

I was admitted to hospital four times in the last two years in DKA, once vomiting for 5 days in a row. Each time I told the people looking after me about my symptoms but I was told that they didn’t need investigating, it was expensive and my nausea was settling. On my final admission when in resus, through tears and pain, I told my nurses that I had had enough and something needed to be done.

Now that something has finally been done and I have my results I should feel better, right? Well, it’s 50/50 really. For the last 3 years since I’ve been in ‘recovery’ from my rebellious diabetes years I’ve tried incredibly hard to gain control over my blood glucose levels. I often looked at other peoples HbA1c results and couldn’t understand why I wasn’t achieving my goals. I was doing everything I should be, but at the back of my mind I was always wondering… “Is my stomach emptying later that it should be? Would that explain the mystery hypos & highs that I was experiencing?” In the end I decided that it was down to me, that I was the problem and that I just wasn’t good enough at having diabetes. In a way I think I was right – I know I wouldn’t have this problem if I had taken my insulin and tested my blood glucose as I should have. If there is any blame about the cause of this complication then I accept full responsibility and I will tell myself that every day, every time I eat and with every high or low that I see. I know I shouldn’t… but I can’t help it.

It actually feels quite strange to be finally talking about this. After having symptoms for such a long time I’ve become quite used to them (on the good days) and have come up with quite a few strategies to cope with them. I always felt that unless I had been diagnosed I shouldn’t talk about it because I was playing a guessing game and there was no evidence to back me up, just that feeling that I couldn’t quite put my finger on, oh and years of nausea, vomiting and pain.

So what’s next? I’ll have a follow up with the wonderful (he really is wonderful) Gastro consultant who I saw during my initial consultation, he’ll talk to me about how I can manage it. He’s also said I need to maintain as much control over my blood glucose as possible (easier said than done, eh) so I’ll need information about managing my insulin and I think I’ll need dietary advice too. It’s a brand new diagnosis and it’s incredibly scary to know nothing at all about it – I feel very much how I did when I was diagnosed with diabetes, but hopefully I’m a little wiser now (we can only hope!). Only time will tell. 

For information on Gastroparesis (delayed stomach emptying) see here and here.

Ninjabetic x 

Sunday, 15 March 2015

The Diabetes UK Professional Conference and Social Media

The Diabetes UK Professional Conference is over and now it’s time to reflect. In my column for The Diabetes Times I wrote about the topic I would be presenting at the conference and how it needed to grow from previous years. It needed to make more of an impact. I think it’s very important that after each talk the audience goes away with something to think about, something they can try to implement in their departments, and I believe that many of them did.

One topic, language, came up during the presentation. That day, language had been discussed via twitter by patients who were discussing the use of the word ‘non-compliant’. It hit a nerve with many people at the conference, patients and Health Care Professionals (HCP's) alike, and luckily the group I was presenting with had a stage to address that problem. In my presentation I made a point of telling the audience that I was labelled as ‘non-compliant’ due to being in DKA so many times - I make a point of mentioning this in all of the talks I do. I was not able (for so many reasons) to manage my diabetes in the way that I needed to, but in no way did that mean I was purposely not complying with rules that had been set for me. A patient who is struggling to manage their diabetes is not a rule breaker, they do not need the added pressure of feeling that they are purposely causing problems for others, they need support and guidance and they need (and very much deserve) respect in the way they are talked to and about. I hope that the use of language continues to improve.

During my session I talked about my journey with diabetes, trying to condense it into a 10 minute presentation, and tried to convey the seriousness of the first 10 years after my diagnosis. However, I didn’t need to tell them how dangerous my habits of not testing my glucose levels or taking my insulin correctly was. The audience was made up of health care professionals, they knew the seriousness of my actions. The way that I used to manage my diabetes shocks many people, myself included, but time and time again I hear about patients who are just like I used to be... HCP's ask me about how I turned things around and my honest answer is by using social media, however I still feel that I chose to gain control far too late. I wish I had done it sooner, I wish it had been suggested to me sooner, and that’s what I hope to get across to HCP's when I talk to them, that a turning point for their patients could be just around the corner.

During my presentation I talked about how my recovery began. For me it was a combined recovery, using face-to-face clinic appointments alongside social media. I think for many HCP's this may sound like a strange combination, or certainly a few years ago it may have, but now I know many people who, like I did, use social media as a part of the diabetes treatment. For so many, thousands in fact, social media plays an important role in not only peer support but also diabetes education, building confidence around living with diabetes, learning to trust and communicate with our health care teams, developing our own knowledge and understanding about the condition and many more aspects. Social media isn’t just about sharing pictures of cats, it’s so much more than just being social, it’s about learning, directing, engaging and developing. The face-to-face appointment aspect has really helped me too – It made me realise what a wonderful, dedicated and passionate health care team we have in Portsmouth. In a funny way it wasn’t until I started to really trust them that I realised how passionate I could be about the condition that had tormented me for such a long time.

The ‘and finally’ part of my talk came with a take home message - although there are thousands of patients who use social media as a part of their diabetes treatment, there are still thousands who don’t. There will be many reasons for this and, as I said during my talk, social media isn’t for everyone, but there will be many patients who can and will benefit from it. Perhaps it would just take that small suggestion, like I had three years ago, to take a look and see what comes of it.

Three years ago, when Partha suggested I set up an account for local patients to connect with one another, I didn’t think it would help my diabetes in the slightest. I really felt that I was a lost cause, however I’ve achieved a lot in the last three years – A reduced HbA1c, dormant retinopathy, confidence in living with diabetes, knowledge of how to avoid complications, feeling able to take control and improve my self-management and perhaps the most important to me is being involved in making changes in how diabetes care is delivered for others. If I had known all of this after my diagnosis, before I took so many wrong turns and ended up in trouble with my health, I would have done things very differently. I would have taken responsibility and had better outcomes and that’s what I hope others can achieve. Like I said, it’s not for everyone, but for some, social media can be one of the best tools they have against diabetes.

I gained 88 new twitter followers during the Diabetes UK Professional Conference. Over half of these are Health Care Professionals… Now I’m excited to see how we can work together on social media for the benefit of patients. Let’s see just how much of an impact we had and which changes have been made at next year’s conference…

Ninjabetic x 

The Diabetes UK Professional Conference - Time to Take Control

“After bouncing off stage I let out a huge sigh of relief. I looked around and saw faces staring at me, smiling at me, nodding and clapping... It was a very surreal moment, but one that will stay in my mind forever.”

I wrote this last year after delivering a presentation at the Diabetes UK Professional Conference about the Diabetes Online Community. I was able to provide an insight into what online support has to offer patients, their families and carers, and touching on how Health Care Professionals (HCPs) could introduce it to their patients. The audience was comprised mostly of HCPs, which gave me perhaps the biggest opportunity I’ve had to get my message across to those who can reach wide groups of patients. Social media may not be the biggest player when it comes to improving diabetes care, but you can’t deny that it has become a key influence for thousands of patients in the UK, if you want to find out for yourself then go online and listen to what they’re saying.

Tomorrow I will be heading off to London, once again, for the Diabetes UK Professional Conference, this year titled ‘Time to Take Control’... 

Video - The Diabetes UK Professional Conference 2015

In this week's video I'm at the Diabetes UK Professional Conference and I talk about my experience of using the MiniMed640G and how SmartGuard worked to prevent hypos! 

Ninjabetic x 

Saturday, 7 March 2015

Video - Hypoglycaemia prevention

In this video I talk about my experience of using the MiniMed 640G pump from Medtronic and how it's working to prevent my hypos. 

Ninjabetic x 

Friday, 6 March 2015

Prescription Exemption Certificates... Are people with diabetes exempt or not?

“Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high” – NHS Choices.

Yes, diabetes is a lifelong condition, the NHS clearly states that message. Healthcare professionals break that jaw-dropping news to us and our families when we are diagnosed, we read about it in the papers, it stays in our minds with every injection, cannula change and finger-prick test we do, and we have no way of getting away from this incurable condition that we live with day in and day out.

Sunday, 1 March 2015

64 days on MiniMed 640G: Managing my Type 1 Diabetes. Week 1

Some of you may know that I've been lucky enough to be offered a 64 day trial of the brand spanking new MiniMed 640G by Medtronic. Why 64 days? Because the number 64 is in the pumps name. Why not 640 days? Well, I asked (a few times), but sadly the answer was no. But hey-ho... I'm not complaining! 

So during the 64 days I'm going to be vlogging (it's like blogging but with videos - vlogging!) on youtube about my experiences with the 640G. You'll also find two other patients with Type 1 who are also using the 640G and will also be vlogging - Dave (@SowerBee) and John (@MM640G).

For those who haven't heard about this pump you can find more info on a previous blog that I wrote about it. It goes into a lot more detail about the technology and the aim of the new system,

What can I tell you so far about the pump?

Ok, I'm only a few days in so I want to start with the insulin pump. It's taking some getting used to as I've been using another pump by another company for 2 years now. I found it really helpful to sit down with a cuppa after my training and just have a look around the options and settings, just taking time to get used where everything is and how to access the options I'd be using. It's important to be comfortable with medical technology - There's no set time that you should be used to it and 'flying' through the options. Everyone learns at a different pace. Asking lots of questions helps! 

The pump itself - I love it! 

I'm not just saying that because I'm trialling it - but I really rate it (yes rate, not hate) and after a week of using it I would be more than happy to continue using it in place of my regular insulin pump. As a stand-alone pump (forget the CGM and SmartGuard for now), it's bloody impressive! I've never used a Medtronic product before so I have no idea how similar it is to other pumps they have, but personally I think it has set the standard in terms of what's on the market at the moment.

The pump provides a vast amount of options and functions, offering much more control (in terms of diabetes management) than I'm used to. For some I can imagine that may be slightly intimidating (I was a little overwhelmed during my training session) but don't let the amount the pump can offer put you off - as a patient you are in control. Now that I've had a few days to get used to the pump I can see just how beneficial it can be to my day-to-day diabetes management. In a strange way, as much as it gives me more control, I also feel it gives me more freedom through the choices I can make.

It's the little things that have impressed me...

For example - I can flag specific events that have affected my blood glucose (BG), so if I've had a mahoosive pizza and my BG has shot up I can flag that on the pump. Similarly if I've had a post running hypo, I can flag that too. Then in my appointments when my consultant says to me...

"What happened on this day 2 months ago?" 

my answer won't be... 

"2 months ago? I don't remember what happened 2 hours ago!"

... but it will be flagged in my data which will give us both more insight into what actually happened, rather than guessing. We all know how hard it is to remember every little detail! 

Other awesome pump things... (These aren't all of the options but they are a few of my favourites).

  • It has a big colourful screen - this is a huge help to me as I have retinopathy
  • Sexy design - It looks like an iPod and is very sleek and smooth (does that sound weird?)
  • The belt clip is also the key that unscrews the battery cap! (No more 5p tricks!)
  • It has a back button (this impressed me far too much)
  • The menu is incredibly easy to navigate
  • There are clear sections in the menu depending on which info you need - e.g. history which is broken down into sub-sections - alarm history, daily history, sensor glucose history etc. 
  • The pump will remind you when you need to change your tubing and re-fill your reservoir (no more "when did I last do that?" moments
  • It has a 'reminders' section which has sub-sections that can be personalised e.g. reminders to take other medications, check your BG, a 'missed meal' reminder etc. - I really like how personal I can make this pump!
It also has the regular functions that you would expect from an insulin pump, like bolus delivery options and temporary basal rates.

Are there any cons? 

One biggie that had me worried when I started using this pump was that the blood glucose meter that works with it doesn't have a bolus wizard, only the pump does.

A bolus wizard basically calculates the amount of insulin you need to take for a meal (or a correction dose) depending on your blood glucose levels, the carbohydrate content of your food (if applicable) and other factors such as exercise or illness. Now... my current BG meter has a bolus wizard which does all of this and then sends (via Bluetooth) the amount of insulin I need to my pump which then delivers it, meaning I don't need to fish around in my bra or pockets to find my pump and do this manually. 

Th Contour Next meter (the one working with the 640G) doesn't have that function, meaning trips to the bathroom or a different room to pull the pump out from wherever I've hidden it in order to use the bolus wizard. There is an option on the BG meter to deliver a pre-set dose of insulin from the meter straight to the pump (no fumbling) and also to give a dose of insulin that you've decided yourself straight to the pump (also, no fumbling). 

For some people this isn't a huge con, but I think it depends on how open you are about using your insulin pump - everyone is completely different. Personally, I don't mind people knowing that I have an insulin pump, however, depending on the situation (a meeting or a lecture for example) I would much prefer not to be fumbling around in my bra for my portable pancreas. 

Currently this is my only con and one that I was aware of before getting the pump. But who knows... at the end of the 64 days maybe this won't be such a big deal for me! At the moment the pros certainly outweigh the cons!

I'll blog about the CGM and SmartGuard soon... I promise! 

Ninjabetic x 

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