Friday, 2 December 2016

Thoughts

I find myself pondering life most days, my mind is a whirlwind of thoughts and questions, full of hows and what ifs. I suppose me and my thoughts, although not in constant agreement, have one goal, to make sense of this life and all that it is. I saw a quote earlier, from Scott Fitzgerald and it reads;

"I was within and without, simultaneously enchanted and repelled by the inexhaustible variety of life"

I like it.

Something that brings variety into life is my diabetes, spice up your life and all that, spicy Tuesdays eh Lydia?

Type One Diabetes is both a blessing and a curse, it is the reason that I have been a part of and experienced some really cool things, but it's also the reason that sometimes I lie awake at night wondering what impact it is having and will have on my life in the future. I try not to dwell on it though, I try not to get too concerned because otherwise it will consume my thoughts and all I'll do is have an internal panic about it all.

I can't panic or dwell on the fact that every time my blood sugar is not in the normal range it increases my risk of losing my sight, of losing a limb, kidney function, life. But no, I can't go there! But at the same time, I kind of have to go there? I have to remind myself of this every day so that I can give myself that extra kick to get and keep my blood sugar under control.

The difference is that I'm on autopilot when I'm doing that, my mind is programmed to think for the 100th time that day just what could happen to me, my subconscious mind, shall we say. Then the part of my mind that likes to overthink it will stroll up, that's where I have to reel it in.

I remember way back in Year 8, in a Religious Education class at school, our teacher asked us about responsibility and things that we have to be responsible for. I was only twelve, but I put my hand up and I said "I'm responsible for keeping myself alive because I have Type One Diabetes".

This disease brings so much variety to this life that sometimes you become very much aware of the thin white string that's keeping you here, probably otherwise known as insulin and a beating heart.
That realisation though, that deeper understanding of how precious this life is, is a blessing. I have Type One Diabetes but also thanks to insulin I have as much of a chance to live my life as everyone around me. It may be a struggle, but it's also a reason to be thankful!

I don't know where exactly I wanted this post to go, it's just thoughts though, a glimpse into the whirlwind that is my mind, a glimpse into my opinion on this equally enchanting and repelling inexhaustible variety that is life.

Tuesday, 15 November 2016

Insulin For All

World Diabetes Day falls on the birthday of Sir Frederick Banting, the man who co-founded insulin, I sometimes think that while World Diabetes Day is a day to raise awareness for both types of diabetes, it often gets clouded by everyone just talking about Type 2 Diabetes and how we can "eat more fruit and veg and be healthy!" However, World Diabetes Day exists as a day to celebrate the birthday of a man who is the reason that people with Type One Diabetes are able to live their lives, so really, not to be cheeky, but, Type One should get a bit more attention than it does. Seeing as we do rely on insulin to live!

Speaking of relying on insulin to live, I saw a photo today with a quote from Banting and it said; "Insulin does not belong to me, it belongs to the world". And it made me think, Frederick Banting and Charles Best made insulin cheap, it was such a necessity that when it was discovered they sold the patent to the University of Toronto for $1 and hoped that insulin would be affordable. Unfortunately a lot of people needed insulin and still do, so the University signed contracts with large pharmaceutical companies in order to get large amounts of insulin made. In countries like America, insulin is highly commercialised and the insulin market is expected to top $48 billion.

This means the cost of insulin is constantly rising and for people with Type One Diabetes in America, who don't have health insurance or who don't have a very good health insurance plan, access to insulin is becoming increasingly harder. This shouldn't be the way. Type One Diabetics need insulin to live, it is a necessity and people shouldn't have to pay out hundreds and thousands of dollars to live. Insulin shouldn't be a privilege, insulin is a necessity, it is a must, it is life, without it, people with Type One Diabetes can't survive, our bodies cannot sustain life on their own.

Honestly it's just so disappointing that this is the way. I'm grateful for the NHS anyway, but knowing that people with Type One Diabetes in such a huge, modern, first world country like the US are struggling to get access to insulin due to it being so expensive, makes me even more grateful for our NHS, for our free healthcare.

If insulin access is such a problem in America, think about the state of it in developing countries...

The life expectancy of a child diagnosed with Type One Diabetes diagnosed in one of these countries can be as short as one year. We are all so grateful for the fact that Type One Diabetes is no longer a death sentence, and sometimes we find ourselves taking it for granted, discarding that last bit of insulin you can't be bothered to use up because there is a fresh vial in the fridge...it's no longer a death sentence for us, for those of us lucky enough to have access to it, but for people in developing countries insulin is a privilege.

Even if they do manage to get hold of insulin, it's cost is enormous.

So, as well as being a day to raise awareness of a life with Type One Diabetes, to raise awareness of Type Two Diabetes and try and steer it away from the stigma, to let the world know that our diabetes is not the result of a bag of sweets or a doughnut...it is also a day to remember the fact that there were two men who changed the lives of thousands and thousands of people and still continue to do so thanks to the discovery of insulin. What a precious hormone it is!

It's just a sad fact that Banting and Best would be turning in their graves knowing their $1 patent that they sold to the University of Toronto in the hopes that it would be made available to everyone, is not.

Monday, 14 November 2016

World Diabetes Day- on behalf of NHS England

World Diabetes Day; the birthday of Frederick Banting. Banting was the man who co-discovered insulin and is the reason that everyone with Type 1 diabetes is alive today.  He and Charles Best discovered insulin in 1922, completely turning around the prognosis for someone diagnosed with Type 1 diabetes.  It went from being a slow and painful death to being a disease that can be controlled and one people can live with.

I live with Type 1.  I have done since I was 11 years old.  I decided from the moment I was diagnosed that I would do something with my diagnosis and be a voice for other people who live with Type 1. A lot of people have the misconception that diabetes is a disease for the elderly, a disease for people who are overweight or live an unhealthy lifestyle, when in fact diabetes is just an umbrella term for two main types of diabetes: Type 1 and Type 2.

Type 1 diabetes is an autoimmune disease; it occurs when the immune system attacks the insulin-producing beta cells and renders our bodies unable to produce insulin. Without insulin, people die. That is a fact and is the reason that people with Type 1 depend on insulin injections.  Type 1 has nothing to do with diet or lifestyle and normally presents in childhood and adolescence but also affects adults.  

Type 2 is far more prevalent in those over age 40. Predominantly it’s linked to lifestyle and diet. It is insulin resistance; their pancreas still produces insulin but the body doesn’t utilise it as it should. Type2 can also occur naturally because of old age. 

I just thought it would be help to provide a little bit of background information to kick off this series of blogs because it is essential people differentiate between the two.  

I think the keyword in the sentence living with Type1 diabetes, is living.  Thanks to Frederick Banting and Charles Best this disease is not a death sentence anymore.  We have the chance to live.  A diagnosis of Type 1 means that we must become our own pancreases, we are essentially doing its job: producing insulin. People with Type 1 must mimic its behaviour.  It’s relentless, 24/7 and sometimes things don’t always go to plan, blood sugar that is too high or too low is a daily occurrence.

But we have to get on with it. I could complain for ages about how hard work it is, how much of a nuisance it is and how I wish I could get a break from it; but that won’t change the fact that I have to look after my diabetes or the affect it will have on my health will be detrimental.  Living with Type 1 isn’t just a physical battle but a mental one too.  You can dwell on how difficult it is and at some stage in your life, as Type 1 diabetes will experience diabetes burnout, at some point, especially when it becomes overwhelming.  The fact that you have to keep yourself alive because your body can’t do it on its own is a hard pill to swallow.

Letting it get on top of you isn’t an option.  Type 1 is 24/7 for a reason and we have no choice in the matter.  If you let any aspect of your routine slip, you can become very unwell, there’s no way around it. That’s why I’ve chosen to adopt the attitude of not letting it get the better of me and it won't. 
I am the master of my diabetes.  While it will challenge me, I will always overcome these challenges because I want to and because I have to. Letting diabetes get the better of us is not an option.  It’s important to have that mindset, that it will not stop us from living our life. We, thanks to the discovery of insulin, have as much of a chance at a healthy life as everyone around us.  There are so many people with diabetes, defying misconceptions and living prosperous and fulfilled lives with this disease.


That is why it is so important that NHS England is on board with raising awareness for Type 1 on this World Diabetes Day.  While we can all stand up and be a voice for those who have Type 1, NHS England is a big voice out there, with others to get the message out there loud and clear that Type 1 is serious, it is a challenge, it’s a relentless battle, but at the end of the day something that can be managed and lived with. That’s one of the important messages to get across this World Diabetes Day.  Be aware of Type 1 and just what it takes to live with it. 

Tuesday, 1 November 2016

Diabetes Awareness Month

I've been living with Type One Diabetes since I was 11 years old, I was diagnosed at the end of Year 7. Not only did I have to adjust to a new school, but I had to adjust to a whole new way of life, honestly, I've had 7 and a half years to "adjust" and sometimes I think I'm still not quite there yet. I don't know if you can ever truly fully adjust to a life with Type One, it's unpredictable and no two days are the same, you could have perfect blood sugars after eating pizza one day, then you'll get completely different results another day, it never fails to surprise you or lure you into a false sense of security before being the reason you wake up at 3am sweating due to low blood sugar. What happens though, is that it becomes a routine, one that you have no choice but to go along with, day in, day out.

With the injections, the insulin pump site changes, the finger pricking, the carbohydrate counting, the hospital appointments, comes your mind, comes the thoughts you're left alone with in the middle of the night. It's remembering that you're dependent on insulin for the rest of your life, don't even get me started on the fear of not getting access to it, a reality for many many people, not just in poverty-stricken countries, but in medically and technologically advanced countries like the United States where the price of insulin has soared. It's the mental battle of not wanting to rely on anyone or be a burden when you're feeling too unwell from high blood sugars to fully function, but the realisation that not feeling completely 100% all the time is your reality. It's reminding yourself to go and get your flu jab when winter rolls around because the flu could put you in hospital with Diabetic ketoacidosis.

Living with Type One isn't as black and white as an injection here and there, a finger prick and everything is alright, it's everything else that stems off of it, it's all the thoughts and the feelings that come along with it. Other than helping people realise the day to day challenges of a life with Type One Diabetes, it is also a good chance to educate people about the fact that Type One doesn't have to stop you from doing anything. I think our Prime Minister is a great example, her election sparked an outcry among a lot of people who doubted her ability to run our country due to her diabetes. So far, she has been fine. People love to make assumptions, but as challenging as diabetes can be, it is controllable.

Diabetes Awareness Month is not just about Type One Diabetes, although it is the type that makes up only 10% of all diabetics, making it the one that doesn't get it's chance in the spotlight very often, I think it's only fair that we talk about Type Two Diabetes too. I'm going to lay down a few key differences between the two main types before I continue:

Type One - Autoimmune disease, pancreas does not produce any insulin, dependent on insulin injections or infusion of insulin via a pump to stay alive, nothing to do with diet or exercise
Type Two - Insulin resistance, pancreas produces insulin or little insulin but the body doesn't respond to it as it should, can take tablets to increase insulin sensitivity, sometimes need to go on insulin injections, has a strong link to diet, however there is a strong genetic component also

I say this because people are very quick to judge people with diabetes. Diabetes is an umbrella term for Type One and Type Two diabetes. However, you and me both know that when people hear the word diabetes their first thought is a fat person with one leg, they'll think about a picture of chocolate cake or something else sugary, they will be thinking about Type Two Diabetes. So wrong! People have been conditioned to associate Type Two Diabetes with these images and although it is linked to diet, that is not how every body develops Type Two Diabetes, it has a very strong genetic component, it is also linked to old age, and operations, people have been known to develop Type Two as a result of a big operation. To immediately think, diabetes, type two, fat person, is so one sided and such closed minded thinking. That is why not only do we need to raise awareness of Type One Diabetes as an autoimmune disease, but we also need to raise awareness of Type Two Diabetes as a disease that is not exclusive to obese people. We are doing ourselves a disservice in shaming people with Type Two, at every opportunity take the time to raise awareness of both types of diabetes, maybe then people will be more inclined to differentiate between what type of diabetes they're talking about, and we won't all be lumped together in the umbrella term, 'diabetes' because it's just unhelpful.

Diabetes is rough whichever type. At the end of the day we're all at risk of the same complications. That is one thing Type One and Type Two have in common, that we're all working to keep ourselves healthy.

This Diabetes Awareness Month, lets try and be mindful of both types, let's make sure the world knows that Type One Diabetes isn't a joke, or to do with diet or bad eating, make sure people know that Type One is not a barrier, be aware of some people's struggle to get access to life-saving and life-sustaining insulin, be aware that diabetes is not black and white, it is not as straight forward as a few injections and a finger prick.

Wednesday, 31 August 2016

Connected

For every one of my diabetic friends, this one's for you.

A couple of weeks ago I went to Thorpe Park with my sister, her boyfriend and our cousin, it's a massive place, lots of people, filled with the noise of excited shrieks of people riding the rollercoasters, scrambling to the front of various queues, waiting to get splashed by the water as Tidal Wave comes surging down the drop...So many characters, so many people, all living very different lives. Upon boarding the boat on Storm Surge, a boy in front of me looks at me and says;

"Be careful with that...!" Puzzled, I'm like, "Hmm...be careful with what?"
"Your Insulin Pump!" ..."Oh right yeah, thanks!" Honestly at this point my first thought was, oh how cool that this boy knows what an insulin pump is! Then he pulled out his own; "Look, I have one too!" In my excitement I say "What are the chances?" and then...slap my sister's boyfriend on the knee- sorry, Jeremy! Later on in the day I saw another girl queuing up ahead of us, an omnipod stuck to the back of her arm. Then I realised that even in such a vast place, with so many people, I am still not alone in this, I realised that I probably walk past so many Type 1 Diabetics every single day and don't even realise it- 400,000 of us make up the 5% of people that live with Type 1 and so many of us have no idea that one another even exist!

Then it made me think about the Diabetes Online Community, and how brilliant it is that we are all connected. How many times have you heard/seen a post from a newly diabetic person talking about how alone they feel? I feel like that is one of the most common reactions, to feel alone in this fight, to feel like you're the only one out there who will ever understand what this is like- and it's so easy to feel like this, I think because this disease requires so much attention from the person living with it and you rely on yourself to act as your own pancreas 24/7, it can feel isolating. I have made so many wonderful connections, there are so many people I can turn to who will understand exactly what it's like. As much as our family help us, it's so hard for them to fully understand what we go through, so speaking and knowing other Type 1 Diabetics is such an important part of living with Type 1.

But that's because I'm engaged. A lot of young people will turn away from their diagnosis and refuse to engage in it, they will be in denial, they won't want to accept it. That itself is such a barrier, I know there are probably so many other people out there who don't have the same mindset as the DOC and so will never be open to it, will never discover this whole other side of a life with diabetes. The side that teaches you that you will have rough times with this disease but it will get easier, the side that teaches you that you are not alone, the side that shows you all the amazing things you can still accomplish despite your disease.

To all my diabetic friends, to every one I've ever connected with, even if we only spoke once, know that it's valuable, and that you're valuable to every other diabetic person you've ever spoken to. Even if we don't know it, subconsciously, it helps to talk, it helps to be connected.

Wednesday, 10 August 2016

80,000

80,000.

80,000 people have, at one time or another read my blog, that's a hell of a lot of people. I'm doing my best to get back into blogging properly again. My blog is over 3 years old, but in the 3 years that I've had it, it has had a massive impression on my life in terms of advocating for Type 1 Diabetes and everyone else living with it. It's got my name out there in the diabetes online community, it's connected me to so many amazing people, it's inspired others, it's inspired what I want to do as a career, it's opened doors to amazing opportunities like going to and speaking Parliament and being a professional blogger for Diabetes UK at the DPC.

I still remember being in awe of 200 views, because at the time, that was a lot of people, that was a proud moment for me, so much so that I took a photo of my computer screen so I could relish in the moment for a bit longer. It's all relative isn't it, to how old your blog is, when you first start a blog any number of views is brilliant, any number is good enough to spur you to keep on going, to keep getting those views. As my blog has grown I've seen the numbers go up often with out me having to put in too much effort, I got it to a point where it could hold it's own, and people knew about it. I'm proud of me for that, I'm proud I managed to stick to something and actually get something out of it, friends, inspiration for other people, inspiration for other people and most of all diabetes awareness, because ultimately, that is what I'm here for.

There is no personal agenda here, no want to be the best blogger out there, just to be a good blogger, and for people to read my blog so that I can continue to be an advocate for Type 1 diabetes and continue to inspire and support people, and be the one who can get that message out there that even though diabetes is not easy, it's not your whole life, there is so much more. Things are a little bit different in the diabetes online community these days, I can't say it's in a bad way, but in a way that I want it to be how it was when I was 15 years old and being inspired by all these different blogs. If I could remember who's blog I was inspired by I would write it but I can't. I started my blog when the 'GBDOC' as a brand, or whatever you want to call it, was a baby! I am happy to see it continue to have an abundance of people involved, and see people connecting and connect with other people but sometimes I can't help but feel like I'm getting lost in a sea of so so many people that it's hard to see which direction it's going in. I will leave that point at, I hope it continues to be true to what it was originally started for. There is a bit of drama around these days and perhaps that's also contributed to why I took a step back.

However, I will continue to blog, I have been a bit torn about whether or not I will, but I have made my decision.

80,000 views later and here it is, here is my blog, my baby, and one of my proudest achievements.

Tuesday, 9 August 2016

For me

When I started my blog I was in school, I was 15, and apart from having to do school work I didn't have much else to do or have much else on my mind. As I've got older, I had A-Levels to do, I got a job, I have other things on my mind apart from diabetes and blogging and it's something that I have not cared for properly at all these past few month or year even. Blogging has always been an outlet for me and when people actually started to read it I had even more of a desire to carry on with it. This is not a dig in anyway or a bitter remark, but as the GBDOC has grown, there are other, better blogs out there than mine and that added to my feelings towards stopping blogging all together. I have gotten myself into the mindset that I am no longer important in the world of diabetes and there are other blogs people care about- what even is my blog? Why do I do it?

Then I realised I do it for me as an outlet and I do it so others can learn and find insight from my blogs. I don't have a personal agenda. I do it so I can raise awareness and tell people what life is really like with Type One Diabetes. So I need to realise that, and start blogging again. Even if I don't have as many readers as I used to. So I don't have all the diabetes tech, I can't afford a Freestyle Libre every month and I don't have sensors with my 640G and I don't look at my blood sugar averages often and post about them, or compare pre and post exercise levels because quite frankly I don't exercise- I feel like everyone now cares about the tech and the data and how inspirational you are if you exercise or never have a down day with Type 1. I'm not like that, from me you get feelings, you get what comes from my heart and what I feel like on any given day due to Type 1. But maybe people don't want that, who knows. For now as I try and start up my blog again, I need to figure out what it is I need to do and what it is that will bring my passion back.

I am flattered by everyone who's told me I inspired them to set up their blogs and by everyone who's told me that my blog is good.

I don't quite know exactly what I'm trying to say in this blog, but what I do know is, I have to believe it myself, this is as much for me as it is everyone else.

Sunday, 19 June 2016

7 years

It's that time of year again, my diaversary. I was diagnosed on June 21st 2009, I was almost 12 years old. I was 5ft8 and I weighed 7 stone, for weeks undiagnosed Type 1 Diabetes was wearing my body down, I was weak, skinny, my limbs felt heavy, I slept for most of the day, drank my body weight in water and it wasn't until we put the thirst and the weight loss together that something clicked, something was wrong, and I was about to be diagnosed with an incurable disease that would leave me dependent on insulin for the rest of my life. Even though the GP stupidly wanted to repeat the fasting blood test "just to be sure" after it came back as 16mmol, and told me to "avoid carbohydrates" as the advice over the weekend, but my mum is smart and knew that we had to get a blood sugar meter, so we did and the day before the blood test was due to be repeated again I ended up in hospital for 3 days, with a blood sugar of 45, where I was officially diagnosed with Type 1 Diabetes.

I knew before though, I knew in my gut that I wasn't fine, and that I wasn't going to come out of this without a diagnosis of Type 1, I was 11 but old enough to understand what was happening in my body, and even before I was diagnosed, when I was laying in bed, I said to my mum; "Mummy, do I have diabetes?" and she said no, but we all knew I had it, even if we didn't want to accept it. I don't remember being scared, I remember being relieved to finally have insulin in my body, in fact, there was a girl on the ward with me who was having surgery for appendicitis and I remember thinking "I'm so glad I don't have what she has!" but she left hospital with no lasting effects but a scar, I was about to embark on a whole new way of life...while I was in hospital I learned all about the symptoms of high and low blood sugar because I had no idea what they were, I remember being quizzed on it and getting hypo symptoms mixed up with hyper symptoms..."You can't leave until you get it right!" is what the nurse said to me, I would quickly learn exactly what it felt like to be low, and I would soon learn exactly what it felt like to be high.

Type 1 Diabetes has thrown a lot at me over the past 7 years, and I'm sure it will continue to, but I deal with it just like I always do. It's reduced me to tears, but it's also made me stronger and it's taught me things about myself that I didn't know about, for example who knew I had a knack for public speaking? Not me until Diabetes UK invited me to speak in Parliament for them. Who knew I could write blog posts? Not me until I set up this blog in March 2013. Type 1 Diabetes has meant countless times in hospital, it's meant frustration, it's been sleepless nights, it's been a struggle to keep up with it day in, day out...but it's also meant that I now know a wonderful bunch of people, I've made friendships, I've been to Parliament and it's inspired what I want to do in a career. As much of a pain in the backside a life with Type 1 Diabetes is, I've never let it stop me or get in my way, I continue to live my life, it just takes a little more effort for me. Type 1 Diabetes is a journey of highs and lows, both literally and metaphorically!

My 7th year with Type 1 Diabetes, is my 19th year of life, I was diagnosed as a 12 year old child, I'm now almost 19 years old and classed as an "adult" in many aspects even though I really don't feel like it. I'm now in adult clinic, I left young people's clinic earlier this year and now I have to try and build up trust with the new team and try and build up a relationship with them, I had all that with my old team who were amazing, and now I'm in the process of having my care transitioned over to a whole new hospital, and a whole new group of people. I had to grow up with a disease that set me aside from every one else, however I'm thankful for my friends who would come with me to do my injection at lunchtime, I'm thankful for the fact that none of them ever treated me differently because of it. I'm incredibly thankful every single day for my parents and my family for being my rock through it all, especially my parents because it affects them as much as it affects me, probably a little bit more because of worrying and all, and they are my world!

I'm never going to let Type 1 get the best of me, it's going to give me down days because it's tough, and blood sugar fluctuations make me feel unwell more often than not, and I have a constant routine to upkeep of checking my blood sugar, giving insulin, counting carbohydrates, it all gets a monotonous and I wish I could have a break, It's hard, and a life with Type 1 diabetes doesn't come with out struggle, I know that, but insulin is my lifeline, I'm going to take that lifeline and live my life to the fullest despite the challenges I face. So, 7 years living with Type 1 Diabetes, that's 7 years of finger pricks, of insulin injections, pump site changes, blood tests, hospital visits, hospital admissions, frustration, tears, worry, but above all it's 7 years that have made me, and will continue to make me stronger. I'm always going to raise awareness of this disease, I'm always going to challenge the stereotypes and make sure that people really understand exactly what it is to live with Type 1 Diabetes, from the moment I was diagnosed I vowed to myself that I wasn't going to sit back and do nothing, I was going to make something of it.

I'm a person with Type 1 diabetes, it's not all that I am, I am an advocate, a cat lover, a blogger, an avid photo taker, someone who goes through about 5 million pairs of headphones a year, family oriented, all in all can be a bit lazy, I think the sky is one of the most beautiful things at dusk and dawn and with all that, including the Type 1, I'm me, and I've grown up with Type 1 Diabetes but I haven't let it define me. I've struggled a lot with Type 1 since I was diagnosed, but at this point, 7 years later I think I'm happy with where I am with it.

Friday, 17 June 2016

I'm a terrible blogger

I have abandoned you again, I have abandoned my blog so much so that I have taken 'Blogger' out of my Twitter, the shame! This week is diabetes week, but this year I haven't done anything for it, something untoward for me but it seems I have been somewhat, busy, the past couple of weeks and my blog has not been on the top of my priority list, and quite frankly I've been a little bit lazy with it. I've had my down moments in regards to Twitter and my blog and for a long time have been second guessing who even am I in the diabetes community these days? Does anyone read my blog? There are people who are better bloggers than I am so maybe I shouldn't bother? I've been in that sort of mindset with it, and to put a long story short I haven't been bothering with my blog and it disappoints me that I got to that point. That I got to the point of not wanting to write content on my own blog, that I let little things that aren't even important nor do they mean anything, get to me...silly! So I'm back, this is my blog, I know who I am, I know why I blog, it's not for a personal agenda or anything it has and always will be to raise awareness and to get the message out there all about Type 1 Diabetes.

This week for Diabetes Week was about setting the record straight, even though I haven't contributed to Diabetes Week like I should have done and would have liked to have done, I'm going to set the record straight about my blog instead, and get back to regularly blogging like I've said I would for a very long time.

Monday, 16 May 2016

Diabetes Blog Week: Why do I blog? #DBlogWeek

Today is the first day of #DBlogWeek. The topic for today is 'Message Monday', which basically poses the big question: "Why?" Why do we blog? Why do I blog? What is the purpose, what brings me to my laptop every so often to write a post for the diabetes community?

When I started this blog in March 2013, it was not long after I had joined Twitter for the first time in August 2012. The Great Britain Diabetes Online Community otherwise known as #GBDOC, were one of the first diabetes-related Twitter accounts that I engaged in, and from there it opened up a whole new world to me, a world of diabetes advocacy and D-Bloggers from both the UK and the US. It was fascinating, I loved that there were so many people being pro-active and doing something about their diagnosis with diabetes, using it to raise awareness and make their voices heard. One of my first blog posts I wrote was not on my own blog, but for the #GBDOC's website, so I suppose you could say I have them to thank for igniting the spark that made me create my blog!

I soon realised my blog was a brilliant outlet for me, I found myself logging onto my laptop when I wanted to rant about something, I went to my blog when I had something diabetes-related to get off of my chest. I told myself I was going to keep it up, and I did, I religiously blogged especially for the first year and a half and I really dedicated that time to getting my blog out there and getting people to read it. Through Twitter and Facebook, I then discovered a whole bunch of brilliant people, who also have diabetes and who read my blog and who encourage me to keep it up. I discovered 'diabuddies', 'd-friends' and other diabetes lingo! So not only was my blog a creative outlet for me to rant, not only was it therapeutic for me to post on it, but it became a way to connect with other people living with Type 1 Diabetes, and share stories and experiences, and support one another.

My blog was the reason Diabetes UK knew about me and invited me to speak in Parliament for them in June 2013, it then opened up a whole other world of public speaking, something I never knew that I have a little bit of a knack for, I had a new found confidence in myself through it all and before I knew it I was speaking in Parliament again in 2014, this time for JDRF. People thanked me for standing up and being a voice for them, people congratulated me on doing what I do, advocacy and being an ambassador for this disease was something that I enjoyed, and I continue to raise awareness for Type 1 Diabetes through this blog.

I love my blog, it's one of my biggest achievements and the fact that it reached over 10,000 views in the first few months alone had me beaming with pride, to be at over 70,000 views 3 years later leaves me without a doubt that this is something I want to continue to do. It has even sparked my desire to go into Social Media and editorial careers. I get to look back on my years of life with Type 1 Diabetes and I enjoy reading old blog posts about good or bad diabetes moments, to see how far I've come, to gain motivation, to find inspiration, to document the highs and lows of a life with diabetes, to get myself back on track when I've fallen out of routine and to show myself I can do it.

So why am I here? For a number of reasons actually, to be an advocate, to help myself through diabetes, to connect with other people who live with diabetes and to continue being part of a wonderful online community.

Monday, 9 May 2016

A letter: Diabetes burnout

Dear,
whom it may concern,

If you're feeling burnout, you're probably not too sure what it is you're experiencing at the moment, it's a time that leaves you wondering what it is that's going on, why have you lost the desire to control your blood sugar? Diabetes burnout is probably one of the biggest challenges a diabetic might face, it is a huge barrier to overcome. The feeling of defeat, the sense of failure, the lack of motivation to look after yourself, can weigh you down immensely and leave you pushing diabetes and all that it entails to the back of your mind. I've been there, so if you're in this position, I know how you're feeling. Even more so, I know that whatever you're feeling right now, you can come out the other side.

I know that a lot of Health Care Professionals tend to ignore the emotional side of a life with Type 1 Diabetes, we have a massive responsibility right from the moment we're diagnosed. Immediately it becomes ours and our parents duty to keep us alive...and I feel like in the moment, a lot of people don't have the time or the capacity to fully absorb it, you go with the diagnosis and you get on with it- because right there, at that point, your focus is on "Ok, so what do I have to do to control this?" The frustrated thoughts come after, when you're more comfortable with Type 1 Diabetes and your mind starts to wander. Am I right? I feel like that's what process my emotions went through. When frustrations occur, you begin to push diabetes out, it all gets a bit overwhelming, and with that comes lack of motivation. Being your own pancreas is tiring, and sometimes we don't just get physically tired, but tired deep down, a tired soul.

I won't say diabetes burnout is denying it, because I don't think that's it. I spent a good two years feeling like I was stuck in a rut with my diabetes control and for the longest time I could not put my finger on it...my consultant tried to get me to see a psychologist and I always said no, I would go when I knew what I was feeling, when I knew why I always had a HbA1c of over 10% and as bad as it sounds I didn't care. I don't think you're in denial, you're tired of the emotions, it's easier to ignore it, isn't it? It's easier to stay high and not check your blood sugar because you know it's high, and seeing the number on your blood sugar meter probably won't make you take a correction dose...it's easier to just eat and not bother injecting or bolusing because then you don't have to carb count, or take an injection or get your insulin pump out...it's all thought processes like that, that I think make up diabetes burnout. It shouldn't be easy or the better option to ignore your health, but when you're feeling burnout with diabetes you lose that motivation, you find yourself not caring about something that you should care about, and you know that you're putting yourself at risk of complications, you know full well the strain you are putting your body through but it's not enough, it won't kick start you into looking after your blood sugar.

When I was admitted to hospital for nearly 3 weeks to get my blood sugar back under control, all the emotions that diabetes entails came back to me. I remembered what it was to fear having a hypo, I remembered what it was to have calloused fingers, but above all I remembered what it was to feel okay again. Through all the rubbish that diabetes puts us through, through everything that we get tired of, we feel well. I had to take that moment, I had to grab it with both hands and keep it...that moment of remembering why we do what we do, why we have to do what we do. What I say to you is, find that interest in your blood sugar again, make a pact to yourself that when you get up in the morning you will check your blood sugar and give insulin, it's a start, it will help you get back into routine...and then take that interest in what your next blood sugar might be as a result...I found that is what helped me immensely. Tell yourself that you're worth it, you're worth the fight, fight for yourself, find that light, find that motivation, we all have it! If and WHEN you get that desire back, run with it.

Another thing I will say to you is do not be too proud or too stubborn to accept help. I was like this for a very long time in that I would not go and see a psychologist, mainly because I didn't see the need because I had to understand what I was going through myself before trying to explain it to anyone else, but also because I did not want anyone to think I was "crazy" and after constant reassurance from my parents and my consultant that I am not mad if I go and see a psychologist, and after having time to think about it I agreed. It helped, it really did. Even if you feel like there is no point, you might find that voicing your thoughts is a really helpful exercise. So, if you have the chance to see a psychologist, if your diabetes clinic has that service available to you, take advantage it.

I'll leave you with this, unfortunately we're stuck with this until they find a cure. It's not going to go away. and giving yourself some TLC and working hard to get that motivation back is SO worth it, it is not worth ignoring your feelings of burnout, I know it's hard when you get stuck in that rut, but don't put your health in danger any longer, you are stronger than burnout you know you can do it deep down, I would always say that I couldn't do it and that I'm "rubbish" at looking after diabetes, but when I achieved a HbA1c of 7.3% I said to myself that if ever I felt burnt out again, to remind myself I've overcome it once before and I can do it again, and when you finally overcome it the sense of pride will be wonderful, trust me.

I know it's tough and it's frustrating and it's easier to ignore it, tell yourself it's not easier to ignore it, although the complications do not scare you if you're feeling burnt out, it is not going to be easy having a body that's been ruined by Type 1 Diabetes- don't let it ruin you, don't let it control you. Trust me, you will find that sense of motivation again, you will get back into routine and that want to control diabetes again will return and when you find it, hold on to it.

From,
Someone who knows exactly what you're feeling

Thursday, 28 April 2016

Officially in adult clinic

April 4th 2016 was my last ever appointment with the Children and Young People's Team at my hospital. I'm now officially in adult clinic, I'm officially no longer a patient in Young People's clinic, the past 6 years of being under their care have come to an end, I'm now under a new team, and under a whole new hospital. It's, new people, a new train journey to get there, a different unfamiliar waiting room, a whole different atmosphere.

My diabetes has grown up with me in rapid succession in the last few years- as my time at Young People's clinic drew to a close, the hormones in my teenage body settled down and I no longer need as much insulin as before, I don't need as high a correction ratio as I did before, and the one who oversaw that was my consultant- he didn't only see my diabetes change and mature, but he saw me grow up. I was 13 when I had my first appointment with him, 18 when I had my last. I've left Young People's clinic an adult, but I honestly couldn't feel less like an adult in this.

I had transition clinic, I met the team and I met the consultant, and my old consultant told them about me and my history and he told them things that I didn't feel like explaining myself- and he did a wonderful job of it. The transition clinic was in January though, and when I had my last appointment with my old consultant, he asked me how adult clinic was...

"What adult clinic? How is it? I haven't even heard a single thing from them."

Yeah.

From January, until this month, I have felt like I'm not exactly sure where I belong, what hospital do I belong to now? I felt a bit like I was left to float about on my own for a while, until finally I got an appointment letter through for adult clinic a couple of weeks after my last appointment at Young People's clinic. The appointment is in June, with the diabetes nurse. This is one thing that feels a bit alien to me because, my consultant was my first port of call, not the nurses, as lovely as they are, I preferred talking to my consultant. I didn't really like the nurse clinic appointments, felt it was a bit pointless because the only person I ever properly opened up to about things I was struggling with in terms of diabetes in the team was my consultant. I just had that relationship with him.

Now? Now I have no relationship with the people who I'm now under the care of, and obviously that takes time. I think though, that they should follow up with a phone call or an email right after the transition clinic. The DSN did say she was going to email, but she never did. To really get that engagement from the young person, to build on getting to know this new person that's coming into your service, to start developing that relationship that will be so vital in getting anything out of anyone. So, I was a bit disappointed not to hear anything from them for those few months. All I can say is, don't expect me not to feel awkward and not say much at that first official appointment.

I'm sad I have officially transitioned to adult clinic, I love that team that I had, and they have done so much for me. I can't thank them enough. My consultant and I hugged and I gave one of the nurses a hug too and I couldn't say half the things I wanted to say to them there and then or I probably would have teared up so I wrote it down in an e-mail instead. My consultant replied to the e-mail and said he's learnt so much from me, and impressed with the way I've done my best to control my diabetes even though it's really hard. He is, and I told him this, probably the best consultant I will ever have.

We even had a selfie! I want to post it, but then again I don't just purely for privacy reasons for him and for my diabetes nurse.

So that's it, good bye young people's clinic, hello adult clinic...

Tuesday, 26 April 2016

Parliament with JDRF #Type1Catalyst

Yesterday, I took myself off to Parliament to join JDRF, MP's, their constituents, and some health care professionals, to celebrate the achievements of JDRF in funding into Type 1 Research, and to be reminded of how important the role the Government plays in making all of it happen. Lots of blue T-Shirts congregated in the Terrace Pavilion in the Houses of Parliament for the event, hosted by Jamie Reed MP. It was a wonderful opportunity to hear about the progress being made by scientists and doctors in the quest to prevent and cure Type 1 Diabetes, as well as a good opportunity to catch up with internet friends!

Jonathan Valabhji, National Clinical Director for Obesity and Diabetes at NHS England, was there, as well as Theresa May, Home Secretary, who took the time to pop in quickly, as she did at Type 1 Parliament in 2014. Then there were researchers, those whose names you probably haven't heard of, such as Mark Peakman, Professor of Clinical Immunology at King's College, who is trying to figure out how to stop the bodies immune response to the insulin-producing beta cells, who knows important information like the fact that if your body still produces C-Peptide then you have less risk of complications...These people are the ones who work behind the scenes, the ones who work tirelessly to find the way that this world will be rid of Type 1 Diabetes, to find ways of preventing this disease from ever developing, to stop children and adults lives being dependant on insulin.

This time was different to Type 1 Parliament, because, instead of everyone rallying to try and get our MP's to back Government funding into Type 1 Diabetes research, we were celebrating progress, celebrating things that as Karen Addington, CEO of JDRF UK said, are no longer ideas, but they're being developed and they're being tested and they're a reality. And what a privilege it was to be able to acknowledge all of these big strides being made in Type 1 Diabetes along with JDRF UK and other people who are living with Type 1 Diabetes.

What I also did, as well as chat to lots of wonderful people and appreciate the work that JDRF does, I had the chance to interview Derek Rapp, who is the CEO of JDRF US, before the event began. Now this was a very last minute arrangement because unfortunately, Laura (Ninjabetic), who was the original person meant to be interviewing him, couldn't make it, so she asked me to step in...so I found myself at Abington Street Gardens, Westminster, interviewing Derek, who is a very nice man and I'm really pleased I was able to fill in for Laura when she asked!

We left Parliament with the message to keep being catalysts for change, and with the words "You're the reason the landscape of Type 1 Diabetes research is better" from Karen Addington, and Jamie Reed MP telling us to "Keep rattling the bars". We have to keep pushing for change, and keep rallying for funding into the research that will, in time, and with the all important Government support and funding for JDRF, hopefully help us see a world with out Type 1 Diabetes.

Monday, 21 March 2016

Are we brave? How do we get people to take us seriously?

There was a conversation happening on Twitter on Sunday, and the general consensus was about how do we convey that diabetes is serious and isn't a joke, with out sounding like you're winging about it or with out sounding like everyone should turn around and say "wow you're so inspiring" because to those of us with diabetes, it's ordinary life. There isn't a choice for us in whether or not we decide to have to look after our diabetes, we haven't got a choice but to give ourselves insulin, otherwise we would die, so we wake up every day and go through the same routine, get out of bed, check blood sugar, give insulin, eat breakfast and so on. It becomes a subconscious routine, and I'll never forget what the nurse at the hospital told me the day I was diagnosed, she said, "One day, your diabetes will be as routine as brushing your teeth."

Most of us diabetics don't think we're brave, or inspiring, to us, we're pretty ordinary. What I will say though is that diabetes is tough, it's not easy and I think that what people on the outside looking in find commendable about those with diabetes is probably the fact that we DO get on with it. I don't question it, I don't think I've ever questioned why me, why did I get diabetes? Maybe as a joke when I say I pulled the short straw in comparison to my sister, wear glasses, got diabetes, weigh more, not as pretty (ha). Now this is where things get a bit tricky, because we do complain about it and we have the right to, it's annoying and it's irritating and there is no doubt about it that it's serious and can make you very unwell, but the question amongst those of us conversing about this subject on Twitter basically was, "How do we convey to other people how serious diabetes is, without coming across as whining about it?" There is a fine line between "Look at me, I'm so inspirational because diabetes is serious" and "I don't want to be labelled an inspiration, diabetes isn't that bad" and it just gets tricky, and I feel like a lot of people will downplay it just to avoid any unnecessary attention and I reckon that is where a lot of people can get the wrong end of the stick.

I wouldn't downplay diabetes, I would probably be the first person to jump on my high horse about it if someone made even the slightest suggestion about diabetes not being serious. Then it made us wonder, "well, where do the misconceptions come from?" I think that Type 1 Diabetics totally do themselves a disservice by contributing to the stigma against Type 2 Diabetics. The media is the biggest problem in terms of diabetes awareness, almost always reporting the wrong stuff. The Type 1 Diabetics out there who say "You caused your Type 2 from a bad diet" are not helping their own cause. In fact, Type 1 and Type 2 are no more deserving of sympathy than one another, because Type 2 diabetics may well be experiencing hardship that Type 1 diabetics don't understand, for example, those Type 2 diabetics who aren't on insulin have to be super careful with what they eat to avoid that spike, they can't take insulin to correct whatever high blood sugar may occur as a result of just eating. As long as the media is there to report the wrong things, and as long as Wilford Brimley is out there talking about his "diabeetus" us Type 1's don't really have much hope! I sometimes think we need to start with debunking Type 2 myths. All the jokes, and the idea that diabetes isn't serious and funny, all stem from Type 2 diabetes myths, and us as Type 1's are lumped together with Type 2 under the umbrella term "diabetes" and most people don't really truly understand either type!

I feel like I've gone on a little bit of a tangent here. I also feel like I've totally lost my original point, so I'm not even going to try and summarise it for you here. Hopefully you get my vibe!

Ellie

Thursday, 10 March 2016

Diabulimia

I bet you've probably never heard of Diabulimia, you probably don't even know what it is. Let me give you the Google definition that comes up when you enter the term into the search bar: "Diabulimia (a portmanteau of diabetes and bulimia) refers to an eating disorder in which people with Type 1 Diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss. Diabulimia is not currently recognised as a formal diagnosis by the medical or psychiatric communities" It has a Wikipedia page though, and it affects 40% of people with Type 1 Diabetes, and people have died and are dying from it.

I was privileged enough to attend the Diabetes UK Professional Conference last week, and one of the sessions was on "Practical approaches to managing disordered eating and eating disorders" facilitated by Jacqueline Allan, who is currently doing a PHD on the subject at Birkbeck, University of London, Jane Morris and Jenny Singer. Such an important topic, something that really needs to be talked about. One of the first questions posed to the audience was if any of them knew what Diabulimia is, a good amount of HCP's in the room put up their hands, nodding their heads, yeah they had an idea...and that response sparked half "Well done for knowing what it is!" and half "Well where are the HCP's who DON'T know what it is and need to learn about it?" The room had a significant number of people in it though, which is good, any number of people listening and learning is good. However, Jacqueline's frustration, as a person who has been through it herself, was clear. And rightly so!

A conversation that some of us were having amongst ourselves before the session started was, do diabetics in general eat "normally"? And the general consensus was not really. Scanning the backs of packets for nutritional information, weighing our food etc. isn't "normal" and from the moment of being diagnosed we're taught to essentially have almost an "obsession" over everything we put into our bodies. Every time we eat there are questions flurrying around our minds "How many carbs are in this?" "Should I be eating this?" "Where is the packet I need to see it"...we do not eat like everyone else, we have it built into us that we need to see the nutritional information on everything we eat, and for some this goes right over their heads, but for others this is detrimental in a way that may not be so clear straight away. Jane Morris also touched on this, and as a Psychiatrist who has published in the field of eating disorders she said she would never dream of having a recovering anorexic look at the nutritional information on the food they're eating but for diabetics this is unavoidable.

As I said in the beginning of this blog post, Diabulimia affects a staggering 40% of those with Type 1 Diabetes- "Disordered eating behaviours are more prevalent in adolescents with Type 1 Diabetes" As well as being surrounded with the nutritional information in our food, we are also surrounded with constant measurements...notably our weight. Every clinic appointment starts off with "Hop on the scales" What if I don't want to step on the scales?!...Do it anyway, all in the name of medicine! Our weight is scribbled down on a piece of paper every single appointment, for the consultant to see, but even worse, for you to see. However, our weight is a significant point that consultants should be paying attention to, and if they knew more about Diabulimia they may be able to spot warning signs in a person's weight at clinic; "The most frequently cited reasons for deliberate insulin omission is weight loss" and if a consultant isn't tuned into this then it becomes easy to hide. There is an array of excuses one could come up with other than wanting to lose weight. If HCP's noticed a rise in HbA1c and a decline in weight, and knew what Diabulimia is, then bingo! However, HCP's do not know enough.

It's a very well known fact that no insulin, leads to ketones and in turn becomes Diabetic ketoacidosis. From Kris' blog, (https://medium.com/@k_d85/thinking-about-dka-887e73aa9c10#.q8at8dhjk) I found data values surrounding admissions to hospital with Diabetic ketoacidosis, about 44% are due to infection, then there is pump malfunction, alcohol etc. and then there are those who's diagnosis of Type 1 comes from presenting to hospital in DKA.

19% of cases are considered due to "Non-compliance" if you are a HCP and you use the words "Non-compliance" to describe a person with Type 1 Diabetes then what are you even doing? Just stop. One of my tweets that generated 33 likes and 20 retweets was this: "HCP's need to stop using the word non-compliant, because uncontrolled diabetes is almost always a deeper set problem" And it links in to the session that addressed managing admissions with Diabetic ketoacidosis and recognising that repeated admissions with Diabetic ketoacidosis are not "Non-compliance" but are in fact a psychological problem that needs to be addressed and there is a very high chance that Diabulimia falls into this.

The mortality rate for diabetes as a disease in itself is 2.2/1000, the mortality rate for people with both Type 1 Diabetes and an Eating Disorder is 34.6/1000. Look at those figures for comparison, but also look at them and realise just how much of a problem it is. People die from Diabulimia, it's not something to be brushed off, and it leads us to question over and over again WHY is this not recognised...we can figure out the facts and figures and chuck out data values left right and centre that leave people shocked, yet it is still not officially recognised by the medical and psychiatric communities? Of course, it's probably a bit of a taboo subject, who wants to hear about a Type 1 Diabetic purposely not taking insulin? When we are taught that insulin is our lifeline? What preposterous behaviour, who wants to hear that? It makes people feel uncomfortable, that someone would do "the unthinkable" and stop taking insulin. Well guess what? It happens.And there are so many people out there in such a dark place, who feel so uncomfortable in their own skin that they would risk their lives to be thinner.

It is a tragic situation that 40% of people with Type 1 Diabetes find themselves in.

Talk about it. We NEED to talk about Diabulimia. Health Care Professionals need to know what it is, and if they do know what it is then provide them the tools and the education to be able to approach the subject. A consultant is the first line for a Type 1 Diabetic and the problems they might encounter, and they need to be clued up on every aspect of a life with Type 1 Diabetes, and even some of those struggling with Diabulimia do not know the name of it themselves, and probably will never bring it up themselves at an appointment either. Diabulimia ins't rare, Diabulimia isn't a "small percentage" it's 40%, that's nearly half of all people living with Type 1 Diabetes. Now tell me that Diabulimia is something that can be ignored.

-Ellie

Saturday, 5 March 2016

Diabetes UK Professional Conference 2016- Blog 1

I am not huge on numbers and data and statistics and all that side of things, I'm not an expert on totally understanding it but I get the idea, but mainly when I applied to come along to #DPC16 I wanted to be able to not just interpret some data from a study and put it in a blog post and share it out to people who might not even get what I'm talking about, but also to be here to give people a bigger picture, to be able to sit in on the sessions and turn it into something that I think the general diabetes community would be interested in and can relate to, if I got anywhere with my application...and I actually ended up in Glasgow. Although attendance was questionable considering the disgusting turbulence on the way here...

First impressions were along the lines of "I feel so out of place" and I did, I very much did but it would be a surprise if everyone didn't at least have a moment of, this place is absolutely huge and so professional and how am I going to navigate this!? That take on things is also me as a person and it's a part of my personality in that I go through that thought process about certain things.

The conference has around 3,000 people attending it this year, a massive number, and the SECC in Glasgow provides you with plenty of opportunies to get lost may I just add! However it is undoubtedly very well organised and there is a vast amount of information and exhibition stands and posters that you can look at all over the place. As they say the early bird gets the worm and with the thought of a possible 3,000 people attempting to register and get their badges thus inducing a very large crew, us bloggers decided we would do our best to get their earlier and get our badges, having been given our badges it was time to really get into the nitty gritty and get into the conference. There are various sessions running through out the day in various time blocks split up by coffee breaks and of course, lunch time.  

Everyone was shown to the Clyde Auditorium for around 8:45am first of all to hear the opening speeches, kicked off of course by Chris Askew, chief executive of Diabetes UK, who highlighted the current challenges we face in Diabetes care and of course I have been and continue to live tweet throughout the sessions along with the four other bloggers, what I picked up on and one of the things that stood out for me was that specific groups tend to experience worse care, especially those who are under 40 years old, which of course is something that speaks to me as a young person with Type 1 and it's interesting to see that young people genuinely aren't receiving adequate care in certain areas.
The opening words from Chris were followed by a session on "New outcome trials in Type 1 Diabetes" which lasted until 9:55. So how each session works is that there is a overall title, and it is split into three separate talks each allocated a time slot one after the other.

8:55: The Relative Effectiveness of Pumps over MDI and Structured Education (REPOSE) trial, presented by Simon Heller, Sheffield

The talk basically posed the question of "Are pumps better than MDI?" A fairly bold topic I think but an excellent topic to address and it made for a very interesting talk. In summary, the suggestion was made that all in all, neither is better than the other...if people are given the correct education and are adequately advised on how they can utilise their insulin effectively then the answer is the effectiveness of pumps over MDI is relatively not something that is completely clear and as Simon said (that is not a pun, can I just say!) "the benefit of pump technology alone remains unclear...most of the benefit in pumps comes from training in insulin use". So of course that leaves the question, is it all down to education? I won't get into it as I am merely reporting on what I have heard, but I'll leave you to ponder on that anyway, it's really interesting as a type 1 diabetic to see studies like REPOSE going on that are looking at things like this. The overall general consensus was, and can be summed up in this sentence from Simon- "we have to provide much more sustained support for self management" so there's that talk!

9:25: Peptide Immunotherapy for Type 1 Diabetes, presented by Colin Dayan from Cardiff

This was a talk that proves the CS (Clinical Science) side of things at #DPC16 and so of course I'm not going to pretend that I am a scientist. What I will say is that of course, like all of the other sessions it was very interesting and it was looking at the levels of C-peptide in people after a Type 1 Diagnosis, and studied the correlation between levels of C-Peptide and HbA1c and as the levels got lower, the percentage of people who's HbA1c was above 7.5% got higher, and I suppose now is a good time to give the definition of C-peptide "C-Peptide is a substance produced by the beta cells in the pancreas when pro insulin splits apart and forms one molecule of C-peptide and one molecule of insulin" in less technical words, and in short, the higher your level of C-peptide, the more insulin your body is naturally producing on its own, and so the study was looking at is the role that it plays in Type 1 Diabetes and I will stop here because I again, can't pretend as though I'm totally clued up on it!

9:55: Exercise for beta cell preservation in Type 1 Diabetes: The Exercise for Type One Diabetes (EXTOD) trial, presented by Rob Andrews from Exeter and Parth Narendran from Birmingham

The question being posed in this talk was "does exercise preserve beta cell function?" It is very well known that Type 1 Diabetes is characterised by the loss of insulin-producing beta cell function, in turn resulting in no production of insulin from the body. Some of the main points were on how the rate of beta cell loss is slightly less aggressive in adults than it is in children so it's important to look at this, however it proved difficult getting people to stay in the study and also that a fear of hypoglycaemia is a significant barrier with exercise and what was also touched on was how are those barriers overcome these barriers over come to get people to exercise more. And a big part of the
EXTOD study was about empowering people to exercise more and it was also mentioned that people
are told by their HCP's to exercise more but from a survey it's not looking as though some know exactly what they're talking about when it comes to exercise but also can't give the adequate advice.

So there is what I gathered from those three initial sessions and I thought I would break them down and talk about them individually for the beginning of this blog post just to give people an idea of how the sessions play out and the kinds of talks that go on. Immediately just from experiencing those three talks there is an instant sense of amazement and awe when you realise you're in the presence of so much knowledge and so many HCP's who are there and willing to learn from one another and willing to find ways to improve the care that they provide. Very interesting to be able to be a part of that.

Later on in the day I attended different sessions such as "Diabetes in Glasgow" which was probably the most interesting session of the day for me personally as we looked at Diabetes in Glasgow and how they are trying to make it a 'diabetes friendly city' and there was talk about how some are "stuck in a 1949 model of healthcare where people come, they have a lecture, they leave, we forget about them" and that's an issue that's affecting not just Glasgow but other areas too and a consultant paediatrician from the Netherlands presented 'Diabeter' which is a service in Amsterdam for young people that is not in a hospital and so not confined to hospital rules and guidelines and what stood out to me is he said that hospitals don't allow round tables, they have to be square apparently so 'Diabeter'? They have round tables. Their belief is that it is "about looking at how diabetes fits in to your life" and it is not "always about numbers, it is about you" which I think is excellent and links in to a lot of questions about why more effort isn't made to try and get these kinds of services replicated elsewhere.

What I want to touch on last but not least is a topic that needs to be talked about more, which is mental health. And while the topic of mental health is not widely discussed it seems there was two talks yesterday which touched on the subject, there was a session on "multidisciplinary approaches to managing admissions for DKA" I didn't attend that session but instead went to the other session about mental health which was a workshop on "practical approaches to managing disordered eating and eating disorders" However although I didn't attend the first session I did learn something from it from the other bloggers at the conference and learnt that it is basically saying people who are constantly in DKA need more psychological support because a lot of the time that is where the issue lies and that is the reason for the admissions. That links in though quite well with the Eating disorders session because one of the main things I took away from that and what generated a lot of retweets was the idea that HCP's need to stop using he word "non-compliant" because a high hbA1c is not always a straight forward answer but can be something far more serious like  'diabulimia' which affects 40% of those who have Type 1 Diabetes and involves not taking any insulin in order to lose weight. And it is something that should be talked about more because it affects a lot of young people with Type 1.

All in all, DPC day one was very full on and full of lots of very interesting information that I feel honoured to be able to hear first hand and it's amazing to see so many HCP's come together with the collective desire to improve diabetes care and as a person with type 1 myself it's wonderful to see that. So here I am having had a good think about the sessions and my brain was finally feeling full of sentences for the blog and different ideas that it decided that it wanted to regurgitate all of it onto this one first blog post, which has turned out to be very long but it's hard to give short highlights of such a massive event.

Anyway, if you read this and got to the end, well done, good job for sticking around I hope I didn't bore you!

-Ellie


Monday, 29 February 2016

PWDC16

On Saturday 27th February my mum and I got up at 5:30am, and got to St. Pancras for 7:30am to catch the train to Nottingham. From that point, 2 hours was the only thing that separated me from a lot of people that I've "known" and been speaking on Twitter to for a very long time. As the train pulled into Nottingham I reckon I had more than just butterflies in my stomach, a whole jungle was running around in there I think! I've been a part of #gbdoc otherwise known as the Great Britain Diabetes Online Community since 2012, I remember Paul asking me to write a blog post for the website when it hadn't long been started up. I reckon if it wasn't for the #gbdoc I wouldn't have started up my blog, and definitely if it wasn't for the #gbdoc I wouldn't know some of the wonderful people that I know now. So, Paul, and Rhodri, and Alex and everyone else who keeps it going, thank you!




I couldn't stop grinning as my mum and I walked up the path to the marquee (which for the record, is a very impressive marquee!) we were greeted by Alex who showed us to the entrance and the first person I saw was Adrian and his wife, Sue! (AdrianLong3 on Twitter) For the first time we actually spoke real words to each other, we weren't speaking through Twitter we were face to face, in the same room and the only words we could use to describe it were "This is so weird!!" Not only do we get on well with diabetes in common, but we can also have conversations about other things, mainly cats! And of course, we couldn't resist a selfie;



More people started arriving, and for the first time I met many others who I've been talking to on Twitter, notably Abby (the_only_abi) and her husband, Nichola (Mrs_Nichola_D) and her husband, Jules (Jules1315) and her husband, and Jules was very shocked at my height, which I imagined people would be, I'm 5ft10, I did send out a prior warning on Twitter;)! It was brilliant being able to meet everyone in real life and lovely introducing everyone to my mum and introducing my mum to everyone, and it was awesome to be in a room full of diabetics where we were all "normal". Meeting Paul for the first time was a significant moment, he was also shocked at my height (I'm seeing a pattern here, haha) I've "known" Paul since I was 14/15 so to be able to finally meet him now at 18 in real life was amazing!

And Lydia (LydiaSara19)! Lydia and I met for the first time at Type 1 Parliament with JDRF in March 2014, and finally two years later we were able to see each other again which was wonderful. We talk all the time on social media and obviously get on just as well in real life, if not better! Again, it was weird but brilliant to be able to talk properly and face to face, not behind a computer or a phone screen. Lydia brought along Alyssa, who I've spoken to before through Type One Teens on Facebook and Grant, it was nice to meet them too and Alyssa came down from Scotland!



The agenda for the day was basically to first of all think about topics that we all want to discuss in sessions and then go off and join whatever sessions we wanted to! The sessions before lunch were things like mental health, diet and exercise, technology etc. I went and sat in on the mental health session, while my mum went to join on the discussion about diet and exercise because she's a personal trainer, and actually trains a lady that has Type 1! As Paul described it the day was like "a big coffee break" we weren't confined to a certain session once we sat down, we could rotate around the room and sit in on different sessions if we wanted to. All the sessions were very informal and it was a wonderful learning opportunity, everyone had the chance to speak if they wanted and sharing personal experiences about each session was definitely the best way to learn.



One of the things I was most excited about was a real life game of #bgbingo! Every Wednesday at 9pm members of the #gbdoc come together on Twitter and join in a tweet chat- and at the end of each chat there is a game of #bgbingo and this is basically where a random number is tweeted and we all have to test our blood sugar and whoever's blood sugar is closest to the number is the winner. I actually said to myself in the morning that I had to really try to keep my blood sugar in range because I don't mind the 'naughty step' on Twitter, but I'm not too keen on assuming naughty steps status in a room full of everyone! Ha ha. Despite not wanting to be on the 'naughty step' I was! However my blood sugar was 9 so not too shabby. We all wrote our blood sugar reading on a post-it note and stuck them on the window.



Lunch time brought lots of beeping into the room...pumps, meters and injection pens were in full swing. The venue missed out on the request for low carbohydrate food so lunch consisted of lots of sandwiches, but it was lovely nevertheless and my blood sugars were 6.1 afterwards, even if I did have a bit of cheesecake for dessert! After lunch we had another set of sessions, there was more tech talk, more talk about diet and there was also a session on diabetes and other conditions, and 'mank and moan' which was a chance for all the non-diabetics to get together and have a chat! Ha ha. I originally went to the diet session, however I don't really follow a diet, so eventually I went over to chat to Philippa (Flippper1) and Abby who were talking about blood tests! I also had a nice chat with Katie (Kat_greenfield) about pumps and the DAFNE course.

There was a representative from Abbott at the conference who was there to talk to everyone who wanted to know about the Freestyle Libre and I saw one in the flesh in real life which was interesting. Later on in the day Adrian lead a session on the Libre and sang it's praises far better than any Abbott representative could- personal experience is key with that type of thing. There was also debate about the pronunciation of Libre amongst the #gbdoc, apparently the name is Spanish and not French so I reckon that solved the debate!

There were two days of the conference but my mum and I only went on the Saturday because it's a long way to travel and train tickets are expensive for one day let alone two, then add in hotel fees! Today there was a group photo taken with the caption "over 1000 years of experience living with diabetes" amazing! Collectively there was 1000 years of lives lived with diabetes. There were two people that particularly stood out though, and that was Lis (LisWarren) and Pat (apatrickmooney) who alone had 101 years worth of living with diabetes between them. Both have lived with diabetes for 50 years...they are the kind of people that really give you hope, the hope of a life well lived despite type 1! It was great to finally meet Lis in person too after conversing on Twitter and Facebook a few times recently. Not only did we have those who have in the room people who have had type 1 for decades, we also had someone who was only diagnosed on Wednesday, what a trooper and what a great attitude she has towards it despite only just being diagnosed, a brave thing for her to do!

As well as meeting people I've spoken to already on line, there were new faces and all in all it was such a diverse group of people and a really interesting and informative day. I learnt things, (notably that it is mostly Rhodri behind the #gbdoc twitter account! :o ;)!) and I finally got to meet so many of the #gbdoc in real life. The day went by very fast and it was disappointing having to say goodbye to everyone after what seemed like so little time together. It was very much like meeting up with old friends and I felt like I've known some people for my whole life.

At 5pm that day everyone started going their separate ways, and some stayed for the meal. Lydia, Alyssa, Grant and I all took a photo together with our pumps which was really nice and then they left to get changed as they were going back for the evening meal with everyone. The day drew to a close before we knew it and my mum and I caught the train at 7:05pm from Nottingham back to London, we didn't get home until about 10pm and we were very tired but feeling good after a fabulous day.



We met, we learned, we inspired and most of all we were together, in real life, being able to connect away from the phone screens and the computer screens. I'm grateful for the #gbdoc, I really am! How lucky are those of us that are a part of it that we have each other to talk to, we all understand one another and it's satisfying that everyone was just as I imagined them to be. I have now put voices to tweets, and I'm still buzzing from #pwdc16 for sure. Thank you to the #gbdoc for existing, and for helping make Type 1 Diabetes that little bit more bearable.

-Ellie

Friday, 19 February 2016

My tonsillectomy

I had my tonsils 3 weeks ago on Wednesday. It's not common to get your tonsils out as an "adult", I put it in quotation marks because at 18 I still don't see myself as an adult! Regardless, I'm not a child and so it was a big decision for me to make to get my tonsils out, a tonsillectomy is the most commonly performed surgical procedure and while relatively simple, it can go wrong, as can any operation unfortunately. However, I was willing to take the risk and after being told multiple times by the GP that I had to "have tonsillitis over 5 times a year" in order to get a referral, we went private. I'll spare the details of what exactly the problem was with my tonsils, but let's just say they were very cryptic and had big holes in them, and would bleed often and they were just a bit of a mess! My surgery was scheduled for February 3rd 2016, and I was excited for it, but also a little bit nervous.

As always, diabetes has to be considered in every single thing I do. I've never had an operation, let alone had an operation with Type 1 Diabetes in tow. I contacted my diabetes team(s) (I'm in the middle of transitioning and so I'm still under the care of my current diabetes team, but also being encouraged to contact the adult team with questions etc.) for fear of the anaesthetist not being totally clued up on Type 1. On the night before my surgery the hospital called and told me to disconnect my insulin pump at midnight...erm? I said ok but after wards it dawned on me that that is not a good idea. Anyway, I did disconnect it but I just took lantus to keep me covered- they told me to disconnect it to stop me from going low, but I suppose don't understand that my insulin pump is my only source of insulin for my body and so disconnecting it would send me way too high. In the morning I woke up with a blood sugar of 12.9 and I didn't touch it because I thought of it as, I'm safe from going hypo. We arrived at the hospital at 7am and the nurse checked my blood sugar, it was still 12.9...apparently this was an issue, that me and my mum weren't told about.

The anaesthetist came in, asked if I had disconnected my insulin pump etc. and then said that my blood sugar was a bit on the higher side, which I knew, but I assumed it would come down once I was on the saline IV or whatever it was, and I assumed I would be put on a sliding scale. Basically there was a lot of miscommunication and I wasn't even sure if I would be able to keep my insulin pump on during the operation. Anyway, my blood sugar needed to come down and it was about 7:30am at this point, with surgery scheduled for 8:00am. I said to the anaesthetist, can I not just correct on my insulin pump? My blood sugar was not going to come down by just watching it. He said "no no hold on let me talk to the surgeon" This wasted a good 15 minutes, 15 minutes that I could have corrected my blood sugar in and they could have been on the way down. So the surgeon comes in at about 7:45, and says "We can't operate on a blood sugar over 12" So my question at that point was: "Why were we not told this?!" I could have corrected my blood sugar that morning when I woke up and it was 12.9, and by the time 8:00am came round it would have been corrected. Grr! They finally told me to correct on my insulin pump...and gave it another 15 minutes. All of the odds were against me, I was nervous about the impending surgery, anxious about my blood sugar not coming down in time...all of which are emotions that can raise my blood sugar.

At around 8:00am the nurse came in and checked my blood sugar: 12.6. Argh! They had come down 0.4 in half an hour. She left, and the anaesthetist and the surgeon both came skulking in and basically said they can't do the operation. The surgeon had a clinic at 9am apparently, and so he had to go. We asked if it could be done later in the day and he said no because he does one operation on a Wednesday morning and then goes to his outpatient clinics. At this point, both my mum and  I were incredibly frustrated at the lack of communication and just lack of understanding it seemed about my blood sugar...I didn't feel at ease about it in the slightest to be honest. So, I didn't actually even have any words for what they just said, I was angry and just feeling a bit teary about it really, we had all worked ourselves up for this operation and were ready for it to be over and done with, I had already arranged 2 weeks off work, my mum took the day off of work to come with me, I was all ready in that hideous gown and in fact the surgeon and the anaesthetist etc. were all ready for the operation too...apart from my blood sugar, it wasn't feeling quite ready, obviously. In my frustration, I felt the need to show it, (hehe) so I got up and I went over to the cupboard and I got my clothes out and I got my coat out and put my things back in my bag (all while the anaesthetist and surgeon were both still in the room trying to apologise and suggest arranging the surgery for another day) and then, they asked me if I wanted tea...TEA? I wanted my tonsils out, I wanted that operation over and done with I didn't want tea. So I said no thank you, and continued my packing, I refused to sit there looking like a fool in that hospital gown any longer. I just felt so silly having got ready for the operation and then for them to not be able to do it just made me feel like even more of a fool.

They left, and I think my mum and I were a bit gob-smacked that I wasn't going to have the operation that day. Someone should have made it clear that my blood sugar had to be 12 or under for them to do the operation. That should have been communicated to us. My mum said she had to go outside to get some fresh air, and then said to check my blood sugar quickly out of interest to see what it was: 10.4! It was a perfect level for the operation. So when my mum went out into the corridor she saw the surgeon and the anaesthetist still standing outside discussing what they could have done better and what they should have done etc. and told him my blood sugar. Miraculously, he turned around and said "Ok I'll do it, I'll just cancel my clinics for this morning". By this point I was already dressed and ready to go- I had my shoes on, I had my clothes on and my bag was packed. I was ready to leave. Suddenly my mum runs in and said that they're going to do the operation and to get ready! Probably within 15 minutes I was asleep. I've never been put to sleep before and I was so nervous about that before hand, but because it went from not having the surgery to then having it, I didn't have time to get nervous about being put to sleep and I just went with it and was just glad to be having it done in all honesty. When I was laying on the bed to be put under, they let me keep my insulin pump on, and I don't even remember falling asleep, I just remember getting dizzy and my last thought and my last sentence before I fell asleep was: "Make sure you don't let me go low..." and that was it.

I woke up in the recovery room about an hour and a half later. My pump wasn't attached to me however, I'm not exactly sure what happened in terms of my insulin during the operation...I had it on at first but who knows why they disconnected it. Regardless, my blood sugars were perfect during the operation. The surgery was an emotional roller coaster really. Throwing up blood when I first woke up was not nice at all, and being practically forced to eat a dry jacket potato really was hideous, I couldn't swallow properly because my uvula (that thing that hangs down in the back of your throat) had ballooned 3x it's normal size and so swallowing food meant swallowing my uvula at the same time. My throat was also very dry, and I believe it was still waking up from the anaesthetic to be honest, I had to swallow twice because my swallowing mechanism just wasn't strong enough. I left the hospital at about 4:00pm that same day.

And the recovery process started! My blood sugars were amazing for the 2 weeks that I've been recovering. It was hard on the days where my throat was especially painful because my blood sugars really hovered on the lower side and I went low on a couple of occasions and the last thing I wanted to do was eat anything. Drinking fizzy drinks like lucozade wasn't an option either because it would have burned my throat, the same went for apple juice etc. Thank goodness for Twister ice lollies! Also, thank goodness 1 million times over for my wonderful mum, she helped me so much and she is just brilliant in every way!

I'm incredibly glad that it is over, and that my throat is beginning to feel and look like a normal throat again.

-Ellie


Saturday, 13 February 2016

Blood sugar meter review: My Dario

When I was approached by Gina from My Dario to review their blood sugar meter I was very keen! As a young person I'm very interested in all kinds of technology and things that could possibly make it easier for me to test my blood sugar and more convenient. I spend a lot of my time on my iPhone, much like everyone else in this modern era- so the idea of using My Dario is very appealing- it turns your mobile phone into a blood sugar meter? How awesome is that. It allows your phone to become the very place that stores your diabetes history, your blood glucose readings and you can even keep a food log and enter how much insulin you've given and how many carbs. Long gone are the days where you had to manually write everything down!


This is what it looks like. At first I looked at it and was really quite puzzled by the whole thing. However, that could be a very good thing for people who want to be a bit more discreet about their diabetes. I was confused about it at first, but with a bit of common sense and the use of my brain, I figured out that there are multiple small compartments all very cleverly and neatly tucked away within this little plastic casing. Underneath is a white compartment, if you pull it down it will reveal the test strip dock, take that out and insert it into the headphone jack of your phone. 




First thing's first, make sure you download the My Dario phone app. 

There are two ends, an orange end and a white end. If you pull the orange cap off, it will reveal the lancet and the little dial that allows you to set the depth of the needle. The meter comes with a pack of lancets so it's good in terms of getting you started. If you pull the white cap off it will reveal the compartment in which you put the test strips- this I found really cool because the testing strips come in a small white container that you insert into the gap and voila! Then place the cap back on both ends and you're good to go! However one thing I will say about the testing strips is that its quite hard to flick up the little lid on the container especially if you're experiencing a low blood sugar. 

Open the app, and it will tell you to insert a strip. This is what the screen looks like when you insert a test strip into the dock. It's a nice design, very modern and aesthetically pleasing. One thing I really like is that it doesn't take a lot of blood, it is not a vampire meter that's for sure! 5 seconds later and the results are in, it will bring your blood sugar up on the screen. I should also mention that there is a small flashlight icon in the bottom right corner of the screen, if you tap this then it will turn on your phone's assistive light to give you more light to help you test your blood sugar in the dark. 

It will give you your blood sugar result, the time and it comes up in a nice green colour. What would make this better is if it was colour coded, for example something like orange for low, green for in range and red for high. I know we as diabetics can very easily distinguish between what is high and what's low but it just makes it look nicer, and just gives you that instant idea of what your blood sugar is before you've even acknowledged the number. Anyway, that isn't a major issue, just something that I think could be implemented. Furthermore, if you look at the bottom of the screen it will give you an average blood glucose and how many hypos and hypers you've had. I only started using it that day so it hadn't properly been able to arrange my data yet! 

I know a big question on people's minds when they're using a new blood sugar meter is accuracy. I use the Medtronic Contour Next that connects to my insulin pump, so obviously I had to use my own meter along side the Dario so that my pump would receive my blood sugar result. In terms of being similar to my Contour, the Dario did well. I have heard that the blood sugar meter that I use is known for it's excellent accuracy so the Dario was very good at producing similar results to the Contour Next. 




However, there was some variation, nothing too major however it could pose a problem if you're experiencing a low blood sugar and there is a variation of at least 1mmol between meters. For example it could show a 4.5 but you're really 3.5...however I'm sure that's an issue with every single blood sugar meter and this is only something that comes to light if you're comparing. 



If you swipe your finger across from the left side of the screen it will open up a new menu, where you can look at your statistics and edit your profile. One thing I will say is that it doesn't allow you to enter whether you're on a pump or injections or what kind of insulin you use etc. which gives the idea that it's a pretty simple user interface which is good for some, however I know some people like a really detailed picture of their diabetes. The only options are Gender, your name, weight, height and date of birth. I like the colourful design on the data screen and it gives you a day by day recap of your blood sugars, and you can look at it in 3 different modes, logbook, timeline and chart.

Overall,  I think the Dario is a pretty neat invention. There is no denying it's convenience, you don't need to carry around a big chunky blood sugar meter in a case, you can simply slip the My Dario into your hand bag and you're good to go. However there are some things that could be improved such as colour coding and making the test strip pot easier to open. All in all I don't think I can fault it, it's got a simple, clear and easy to use user interface and it enables you to view all of your blood sugar readings on your mobile phone!

If you want to purchase My Dario yourself then you can go ahead and do so here with this link: http://bit.ly/AdvancedTherapeutics

-Ellie