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