Tuesday, 20 June 2017

8 years

Dear past Ellie, Ellie from June 20th 2009 to be precise, it's future Ellie here, talking to you 8 years later. Tomorrow will be June 21st 2009, you're going to be doing the Race For Life for the first time, you're not feeling 100% but you know you'll give it your all. You'll finish the race and eat a cereal bar and you'll go home. You won't be thinking about the fact that just days earlier you had a blood test that showed your fasting blood glucose was 16mmol...because the GP told you he wanted to double-check...so it was fine, right? But you'll still go home to the blood sugar meter mum bought for you to keep an eye on things because thankfully she knew the symptoms of Type 1 Diabetes, and deep down you'll both know that the fasting blood test wasn't wrong. That blood sugar meter will show a blood sugar reading that was off the scale at "HI" and you'll be diagnosed with Type 1 Diabetes in A&E that same day. You're eleven years old.

Months of symptoms means your diagnosis will be a relief in some sense, at eleven years old you're old enough to understand what's happening and just a few days before told yourself that you just needed insulin and you will be fine. You stopped growing, you lost weight and at your height you shouldn't weigh 6 and a half stone. Before being diagnosed all you did was sleep, and wonder why you felt the way you did. You'll leave hospital three days after being diagnosed, equipped with everything you'll need to now stay alive, you'll take it in your stride and you'll go back to school and settle into life with Type 1 Diabetes. For the first few weeks you'll find yourself very aware of your own mortality, and you'll realise you're not invincible, but you'll be grateful that you can live a relatively normal life despite the diagnosis.

Most of the time it will be fine, you'll feel in control and you'll feel okay. But you won't know that the first few years will be an especially hard feat, your HbA1c will stay in the teens and you will prefer to ignore your diabetes rather than deal with it. You'll know you're not in denial, but you'll know you'd prefer not to have Type 1, you will remember the days without it. The hard times will show you how lucky you are to have the support that you have from your friends and family, and your diabetes team, you'll find your feet eventually, but not before becoming very familiar with the phrase "diabetes burnout" and realising you're well and truly stuck there.

In August 2012 you'll make a Twitter profile, and you'll encounter lots of other people living with Type 1 Diabetes but you won't properly engage with them until March 2013, when you start your blog. You started it to rant and vent your feelings about living with Type 1 Diabetes, but people will start to read it and it will be the spur you need to find motivation and start living properly again. Eventually you'll see a HbA1c back in single figures and your consultant will high five you, aware of what it's taken you to get there. It won't always be easy and diabetes burnout will still linger, making sporadic appearances, but it will be pushed to the back of your mind through all the amazing experiences you'll have due to being an ambassador for Type 1 and "embracing" your diagnosis.

In 2013 you'll speak in Parliament for the first time, on behalf of Diabetes UK and in 2014 you'll speak in Parliament for the second time, on behalf of JDRF. You'll realise that you're one of the very few people who don't mind speaking in public and later in 2014 you'll make use of that blessing again and speak for JDRF again at one of their charity galas. You'll learn that you have the ability to do something about being diagnosed with Type 1 Diabetes, you'll be determined and you'll be a voice for other young people and people with Type 1. March 2016 will see you fly to Glasgow to be a professional blogger for Diabetes UK and in October 2016 you'll be invited to celebrate 30 years of progress with JDRF and you'll present flowers to HRH the Duchess of Cornwall.

Type 1 Diabetes will bring you frustration and tears and lots of moments where you'll wonder why you were dealt the cards that you were, these times will be especially prominent when you have to go to A&E because of Diabetic ketoacidosis or when you're awake in the middle of the night treating a low blood sugar or feeling that ache in your muscles you'll get when your blood sugar is high. What you won't know when you're diagnosed tomorrow on June 21st 2009 though is that you'll do amazing things and you'll be proud of what you've achieved and understand that you were diagnosed for a reason, and deciding to create your blog and deciding to raise awareness and be an ambassador will be one of the best decisions you'll make.

In fact, in eight years you'll be standing next to a canal in Amsterdam with other diabetic people taking photos and pondering how you got there and realising how crazy it is that Type 1 Diabetes brought you all together. You'll make new friends, new connections and you'll have a sense of fulfillment and you'll live your life with Type 1 alongside you and it will become your routine, like brushing your teeth...like breathing.

Tomorrow will be June 21st 2017, and you've lived with Type 1 Diabetes for eight years.


Tuesday, 25 April 2017

Talking About Diabetes 2017

Saturday 22nd April brought over 150 people together at Birkbeck University in London. Thanks to Partha Kar, Catherine Peters and Professor Peter Hindmarsh and an idea that was hatched in the back of a taxi, 'TAD talks' was born. TAD, stands for Talking About Diabetes, and the days are literally a day for talking about diabetes. Last year saw various inspirational speakers take the stage and talk about their experiences with diabetes and this year was the same. Six people stood in front of the audience and we had the privilege of hearing all about their lives with diabetes.

The speakers were Jen Grieves, Adrian Long, Roddy Riddle, Gavin Griffiths & Melanie Stephenson. Each and every one of them did a fabulous job and they are all prime examples of living well with diabetes and not letting it hold you back. I'll quote Jen here in saying that "We cannot control the diagnosis of Type 1 Diabetes but we can control how we live our lives from that point on" and every speaker has this mentality I'm sure. Everyone's speech was totally individual, they all took a different view point and not only was it inspiring, but we were learning from these incredible people, be it how to handle sport with Type 1 or how to deal with Type 1 emotionally. Adrian spoke about being diagnosed with Type 1 at the age of 40 and the power of friendship in the Online Diabetes Community, Melanie spoke about being an athlete with T1, Jen spoke about learning to love yourself, Gavin spoke about running with Type 1 and Roddy spoke about running the 6633 Arctic Ultra and the challenges he endured.

All of them are the epitome of determination and courage and living a good life despite diabetes and I'll quote Melanie this time, "I wouldn't have found my strength without my diabetes" and this sits well with me, I resonate with this, as unfortunate as living with Type 1 Diabetes is it has made me a better person and I truly believe this. Of course we can't downplay diabetes and turn it into a big ball of positivity and light because we all know too well that this isn't the way it is, but there is absolutely nothing with trying to find positives amongst the negativity and this is something that I realised even more when Adrian was presenting his '12 good things about diabetes' slide.

We were also joined on the day by Stephen Dixon, a Sky TV Presenter, Sir Bruce Keogh- medical director for NHS England and Professional lead for doctors and Jane Cummings- the Chief Nursing Officer for NHS England. Jane actually has Type 1 Diabetes herself and this is something that came as a surprise to all of us as I don't think many of us knew this! Sir Bruce Keogh reassured us in "Don't think for one moment that we don't understand Type One Diabetes", it feels good to know that we have support from people at the very top of the NHS, we have Jane herself who is a Type 1 Diabetic and Sir Bruce Keogh who demonstrated a wonderful understanding of Type 1 and was so willing to listen to us and understand.

I think it's so important to talk, as humans we are communicators and humans need contact with others to survive, it's just how it is, and while there are many people who don't like to talk, I think it's good to talk, it is so good to be able to tell people how you're feeling and what you're thinking. Keeping things in has never been good for anyone! That's why the Online Diabetes Community is such an important part of my life with Type 1 and it seems to be an important life for a lot of other people with diabetes that I know, there is always someone to talk to, pretty much 24/7, if no one in the UK is awake when you're dealing with a low blood sugar at 3am, then someone in America will be.

I also believe that is what makes these TAD events even more powerful, because it is the chance for so many people who spend many days and nights talking on Twitter or Facebook or Instagram to talk face to face, and to be inspired and learn from one another. As Gavin said, "with the responsibility of looking after your Type 1 comes great power", yes having diabetes isn't ideal, but it is true that we do have power in it, we have the chance to choose how we deal with this and how we live our lives, you can be against your diabetes or you can embrace it and for the athletes in the room like Roddy, Gavin and Mel, diabetes is a power in a literal sense too, in that I'm sure knowing what their blood sugar is doing greatly helps them in sports.

It was a great pleasure attending the TAD talks, to be inspired, to see people that I talk to so often on Social Media and to be reminded to as Jane Cummings said, "not let Type 1 define you". All in all it was a great day as always, and again a big thank you to the organisers for giving us all this platform to express ourselves and come together as a big community all in one room!

Thursday, 20 April 2017

Diabetic Retinopathy Screening: What To Expect

Diabetic Retinopathy is a complication that can develop due to having diabetes, the retina is a light-sensitive layer of cells at the back of the eye that sends signals to your brain, your brain then turns these signals into images and this is how you see! The Retina is supplied blood via tiny blood vessels, Diabetic Retinopathy is damage to these blood vessels and if left undetected and untreated it can cause permanent blindness. Retinopathy Screening is something that is offered to everyone with diabetes over the age of 12. In it's early stages Diabetic Retinopathy has no symptoms so it's strongly recommended that you attend your annual eye screening appointments.

I had my annual appointment yesterday. It's a really straight forward, non-invasive test, I'm going to tell you what happens at my appointments so if you haven't had a screening before or you're about to go for your first screening then you will know a little bit about what to expect. When I go in to the Diabetes Center I put my appointment letter in a box and wait to be called in, I'm usually not waiting for very long because the appointments are quite fast. When I get called in, I take a seat and the healthcare professional who is doing the eye screening asks me to read out the letters from a board, just like at a regular opticians appointment.

The next step is the eye drops. When I was younger I managed to avoid getting the eye drops because my pupils were always dilated enough, apparently young people have naturally dilated pupils. Don't quote me on that though! Ha! The past couple of years however, I have had to get the eye drops. I'm not going to lie, they are not a pleasant experience. It's one drop in each eye, you will most likely get given a tissue to wipe your eyes afterwards, I always get given tissues! The drops sting your eyes, they don't sting for very long though, maybe about 30 seconds, no longer than a minute. Once the drops have been applied, I go and sit out in the waiting room for 15 minutes while the drops do their thing and dilate my pupils. It makes your eyes go blurry, you will find things like looking at your phone very difficult because your eyes won't be able to focus, the drops also make your eyes sensitive to light so it's always a good idea to bring sunglasses along to your appointment. These side effects aren't permanent though, don't fret! They last between two and six hours, then your eyes will be back to normal.

After 15 minutes I get called back in, then the photographs get taken! You have to rest your chin on a little chin rest and look into the lens of a special camera, then you will see a green light and you'll get told to look at the light. There will be two bright flashes in each eye, this is the camera taking photos of the back of your eye, the pupil dilation is so the camera flash can get to the back of your eye to reach the retina, nothing touches your eyes though, you just have to look at a green light.

Sometimes the healthcare professional who took the photos will look at them on the screen briefly before you leave, I always like to have a look at the photos, I'm clearly very fascinated by my retina! The official results come in within six weeks. Then, provided your eyes are all clear, that's it for another year!

Wednesday, 22 February 2017

100,000

I still remember the moment I hit 400 page views. I was so utterly surprised and in shock that I actually took a photo of my laptop screen, certain I probably wouldn't see a much bigger number than that for my little blog. Around 3 months into blogging, I had hit 10,000 page views. I couldn't believe that people were reading my blog, that someone, somewhere was reading what I was writing. So I kept going, I kept writing and now here we are. 100,000 page views later. This blog has spanned over the last 4 years of my life, I've documented my proudest moments with Type 1 and I've documented my lowest moments.

I've written all about achieving a HbA1c of 7.3% for the first time in years and I've written about the time I was admitted to hospital for almost three weeks to get my diabetes back under control. I've documented my eye screenings, my clinic appointments, I've talked about going to Parliament and the time a teacher at school really annoyed me in regards to Type 1. It's like my journal except, everyone else can read it. I like being able to write out my thoughts and to vent all while raising awareness of what it's like to live with Type 1. My 8 year 'diaversary' is coming up in June, so that means half of my life with Type 1 I've blogged.

The last 4 years with Type 1 have been eventful to say the least. I started this blog in Secondary School...when I was 15, it was 2013, I was in young people's clinic, I hadn't even completed my GCSE's yet. 100,000 page views later and I'm 19, about to turn 20, I left school over a year ago, I've been in adult clinic for over a year and my life is different, obviously. I have neglected my blog a little bit over the last couple of years and I find it insane that I don't blog as often as I used to, I blogged so often when I was sitting my GCSE's and now I am looking for a job and don't do that much with my time and I don't blog hardly ever. I guess it's all about the motivation. I am trying hard to get back into it though, I have to!

This blog was inspired by other people with Type 1 on Social Media, I saw so many other people with blogs and I knew I wanted to write one myself. My only purpose for this blog was to raise awareness for Type 1 Diabetes and that was everyone else's, too. I have had so many wonderful opportunities because of this blog, like going to Parliament with JDRF and Diabetes UK and going to the Diabetes Professional Conference as a Blogger and as a person I appreciate that but I've never had a personal agenda with this blog, I'm just happy people read it and I'm happy that I can share my life with Type 1 with so many people, everything else is a bonus and I love it all, I love being an advocate and I love being able to be a bit of a voice for others with Type 1.

This blog helped me get a name for myself as an advocate and ambassador for everyone else living with Type 1. My down moments with Type 1 have left me questioning myself and this blog and I often wondered how I thought I had the right to talk to other people about living with Type 1 when I can just about do it right myself, however it helped me realise that even my struggles with diabetes will help people and I realised that I didn't have to sugar coat everything or downplay it, because this is my blog and my thoughts and everything is relative. Makes the good diabetes days stand out more too. Because as we all know, diabetes is not easy.

Feeling proud that so many people have read my diabetic ramblings.

Thursday, 12 January 2017

Bye for now, Insulin Pump

I have made the decision to take off my insulin pump aka Robot Child and go back to injections. This isn't the first time that I have decided to take a break from my pump, or take a "pump holiday". They were short stints of one, two weeks with out it before I gave in and put it back on, I often found and still find that I get very complacent with my insulin pump sometimes, I tend to let the basal do most of the work and in turn I fall out of routine very quickly. I find that I am far more productive on insulin pens, they keep me in routine because I know I have to do the basal injection as a separate thing, I have to make sure I do all the meal time injections properly because I won't have the pump basal as back up, if that makes sense? I get lazy, I find myself just putting the basal up to cover for laziness to keep my blood sugar in range, but I need to do something about it, and that something is coming off of my pump.

Things at adult clinic are a little different, in young people's clinic talk of having your pump taken away from you was almost non-existent, my consultant never uttered those words to me. The clinic I'm at now, do have the rule that, if it's deemed that you're not safe or using your pump properly then it may well be that you lose it. Thankfully, I am not at that point or near it but in order to prevent this, I have taken it upon myself to keep myself on track properly. Involuntarily not having my pump is not something I particularly want, I want to stay in control of this situation and with help from the lovely nurse at clinic I am transitioning back over to MDI.

I know I will have a choice at the end of this MDI stint, however long it may be, the choice will be to go back onto my pump or not to go back on to it.

I have had an insulin pump for almost six years now, it will be six years in June. I was so thankful to get my insulin pump and I got it fast, I didn't have to struggle for it or fight for it- I expressed my opinion, said that I wanted one and my fabulous team at young people's clinic were able to make it happen. I was done with injections, I was on 5+ injections a day, I was tired, I was running out of places to inject insulin and I found myself barely enjoying food because it meant yet another injection. Two weeks of pump training later and I was live on insulin, ready to take on the rest of my life with an incredibly intelligent plastic cigarette-box sized machine delivering tiny, complex doses of insulin into my body to help me get super tight control.

But it is not that simple. Along with the body comes a mind and I had a mind that just didn't want to comply, I had a mind that could only muster tiny spouts of taking advantage of this amazing piece of technology that so many diabetics don't have access to. So over the years I've had a real love hate relationship with it, I appreciate having it some days, then in the same breath it will annoy me to no end.

Upon pondering all of that over the past few weeks, it has made me question if the insulin pump is really, truly right for me. If I am a much better diabetic on insulin pens then why do I not just stick with them? Because in truth, both forms of insulin therapy come with their challenges, laziness on the pump, being slightly overwhelmed on MDI, but in the end I need to choose the one that I will comply with the most, the one that will benefit my health. I see challenges in using my insulin pump but I also see challenges in using insulin pens but you choose your own battles sometimes and for now, I'm ready to take on the challenge of switching back to MDI. I'm feeling optimistic about it, I'm feeling good about my decision to take off the pump.