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.

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.

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.

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

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...

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.

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