Hyper-Alert: The Failed Set Change

99% of the time Mr Insulin Pump (aka Blue) get along like a house on fire. What's not to love? He's conveniently keeping me alive without the horror that is five injections a day and absolutely rubbish control, so on balance I very rarely find fault with him.

However, there is one flaw in the whole insulin pump system that doesn't occur with injections... a failed set. With the injections there is this greater sense of control because  you know the insulin is going to work - going to get there. With the pump, on the other hand, the few hours after the infusion set change  is spent waiting with bated breath, hyper alert... literally! Because every once in a while, about every two months average, something will go wrong and the insulin won't be delivered. Most times it is to do with the 'site' - every pumper will  most likely have had some trauma due to this word! I put my sets in the bottom-side of my back, which strictly speaking gives quite a big 'land-mass'! But scar tissue does build up, especially as in the last three months or so I have avoided putting any sets in my left side, as they never seem to work. Despite my best efforts to vary the site of my set as much as possible, if there is a failed set the problem is normally revealed once it is removed - either there will be blood in the tube (delightful!) or you can see a slight dent in the tube.


Early Thursday evening I had changed my set, and went to bed at a happy 7.8 (140). I woke up at about 1am feeling a bit thirsty, tested again and it was 12.3 (221). After gulping down two cups of water (should have suspected then!) I did a 1unit bolus correction and assumed that it must have just been my dessert of strawberries kicking in later (a rather naive belief, in hindsight, but I was tired and just wanted to go back to bed!). At 6am, however, I woke up with that horrible feeling every diabetic will know... like you haven't drunk a drop of water in a week and on top of that the horrible feeling that you are about to be sick. So I tested... 17.8 (320) - and I'm pretty certain that I caught it at the point where my blood sugar was accelerating upwards at rocket speed, and am certain it in reality was higher - in the 20s. Dragging myself to the bathroom to get a new set out of the draw, I instead ended up being sick and had to shout for my mum to go and get my insulin pen.


I was lying in bed and it took all my energy to give myself the injection. The worst thing is that part of it feels like an out of body experience - I can see by my mum's expression how worried she is, and at that moment in time I am literally helpless. I couldn't have walked downstairs to get my pen, my poor mum had to hold my hair while I was sick into a bucket. It's quite sobering, really, seeing how 'little' I can become, if that makes sense. I am this person who is so lively and 'full of life', so to become that little girl again who quite literally cannot do anything for herself, but simply lie there and wait for the number to come down; it's horrible. I didn't get out of bed to change my set until 10am - the 4units on the pen kept me going until then - and then I stayed in bed until 1pm before I felt like I could eat anything and keep it down. Normally I'm quite resilient with this - if I catch it early enough in the night I can be in school by break, but I ended up taking the entire day off, very unlike me. Maybe it's because I have quite a lot of hypos now, so the highs feel worse? At any rate as much as the hospital/doctors don't like hypos (and I understand why as they can be very dangerous very quickly), for me they are nowhere near as horrible, scary and demoralising as highs. Highs are a list of cant's for me. You can't eat until it's normal (many times I've watched my mum eating dessert; cake; as I've had to sit and watch with my glass of water); you can't think properly - even not being able to do my homework, that is frustrating. Because it's what normal people should be able to do, and it's a bit like D's way of throwing it all back in my face. At least with hypos you can have those moments of D-rebellion where you'll have ice-cream WITH chocolate raisins...!


It is the one really frustrating thing about the insulin pump - although it's needle free (most of the time!) you are so reliant on it. Because there is no long-acting insulin, like the levimer or lantus, you need it pumping insulin in 24/7. With me, I have absolutely no insulin produced by my body naturally, and if my pump is off for even a couple hours or more, my blood sugar just shoots up. That's why I always change my set ideally as soon as I come in from school - not just before a meal, or just before I go to bed. I just wish it didn't happen, that's all. This hadn't happened in such a long time, but it's horrible hearing my mum say that evening how 'ill' I looked - how worried she was again about me going to stay with my uncle and cousins for a week to do my work experience in London. I don't want her to be worried; I want to prove that I can do it. But she is right I guess - I needed her that morning, and part of me is anxious about losing that security net at University, and not being able to cope on my own. I am trying so hard to keep it all together for a year's time, to learn how to be independent, but it is difficult. Diabetes will throw you around when you least expect it, taking you along for the ride and never truly letting you sit in the driver's seat - D doesn't work like that; whilst I want independence he's not too keen to give his up!


I'm not going to let it get me down though - my blood sugar's have been stable today, and you've always got to think that tomorrow is a new day. I found this really great saying today: "failure doesn't mean you're a failure. It just means you haven't succeeded yet." I know one day I will succeed. Not because my blood sugar will be perfect, or because I work out a way never to have another failed set or high again. But because I will learn to deal with it and accept it. To not let it get me down. It still does at the moment, but I'm just going to stay positive - keep smiling - because if I do that then D can never win.


Diabetes in Pictures


As part of diabetes awareness week, I wanted to finally share a bit of my 'Diabetes Story' with you all! I've just reached my 10th 'diaversary', so I thought it would be helpful to give people a bit more insight into my life so far with D through pictures from the last 10 years.
I hope it can reassure other people with diabetes that it can all be okay. I have been through a lot: countless different insulin/injection regimes, and have made many mistakes - I still do make mistakes for that matter, and I am sure I will continue to do so! But the girl you see in the pictures, and the girl who writes this blog - I hope she shows that you can get through it all. With diabetes, you learn from things, find ways to pick yourself back up whenever it knocks you down. Each time is has made me stronger , made me appreciate things in life even more, and I do not think I would be as strong a person without it.
I also hope that this blog post can help to raise awareness about diabetes. I think it's easy for people on the 'outside' to see the insulin pump, and to see me happy and smiling all the time - I don't think a lot of the people who I am close to now actually know the extent of everything I've been through to get here. the insulin pump wasn't something that was handed to me - in many ways it was my final lifeline, and I have never looked back. I would so encourage other T1s/T2s out there to share their story - it was really good for me, looking back on all of this, and I'm going to follow in a couple of days with a video blog, to give a clearer overview of my entire diagnosis/different injection regimes/pump etc... So here goes! (Sorry in advance for the excessive pictures of me with food!)

When I was first diagnosed, I was put onto mixtard. This meant that I had two injections a day, one in the morning and one in the evening, so my eating had to be fairly constant - I had to have a snack mid-morning and mid-afternoon, and couldn't really be that flexible with the foods I ate.

The first few pictures were taken on a holiday to Florida very shortly after I was diagnosed in 2002, at the age of 7:



These are some of the first photos (with food!) that were taken after I was diagnosed. I just thought they would prove that my love of all things unhealthy wasn't going to be stopped by diabetes! I know there's a picture of me somewhere with a Mickey-mouse shaped magnum, ice-cream all down my front, but sadly I couldn't find it! The picture on the left was taken in sea world, and the picture on the right in Magic Kingdom.

This picture on the right was taken in Animal Kingdom, with my favourite person in the entire world, my sister Charlotte. She was 11 at the time, and I was 7 nearly 8. I love this photo as for me it captures how I was still living my life normally - you would never guess that just two months prior to this I had been diagnosed.

Some of these pictures below are some more food related ones! Just to illustrate how diabetes didn't stop me enjoying some of life's important milestones....


Making my own pizza at Pizza Express!



On the right is me with my first ever cake. I was about 8 I think at the time, and was still entrenched with the idea that sugar must be avoided at all costs! Therefore I decided to use candarel instead of sugar, which explains the slightly questionable appearance of my masterpiece... let's just say it tasted as appetising as it looked! I think there can be this idea though, that diabetics just can't eat sugar. For example, there's all this diabetic chocolate sold in boots, Thornton's etc... It isn't actually any better than normal chocolate, and the taste is disgusting! It's more targeted for T2s I think, because it's lower in fat. But I've learnt that there's nothing wrong with cakes and chocolate, in moderation of course! My mum bakes cakes etc... and I can eat them. Chocolate cake of course is more difficult, and I normally remove all icing from cake too. I never really eat brownies, although recently people have started to get me Easter eggs/chocolate at Christmas  - I just have a little bit each day, which always makes me feel like Charlie Bucket!




About a year and a half after I was diagnosed, I was switched to the 4 injections. I think this change is something that is almost inevitable, as the two injections can be restricting. The 4 injections involves a shot of lantus in the morning, which is the long-acting insulin. You then use novo-rapid every time you eat, which is three times a day at meals (If I wanted a big snack, I would have to inject unless my BG was low). By the time we went on holiday again to Florida when I was 9 nearly 10, I had been on the lantus for about 9 months, and it was working quite well; of course not perfect, but much better than the mixtard.

Halfway through the holiday we went to 'Discovery Cove'. It was amazing, but it also saw one of my first experiences with diabetes' less than perfect timing! I remember my blood sugar went very low at lunch (swimming + heat), and I ended up being sick... delightful!

Earlier, by the picture of me and my sister a couple of months after I was diagnosed, I wrote about how you would never have guessed I was a diabetic newbie. I guess one of the things about Diabetes is that it can be an 'invisible' illness. It's not like other illnesses, because you don't look 'ill' and I guess there's no such thing as looking diabetic. However, some of the photos below are just a few of the shots I found where I'm modelling some of diabetes' less than glamorous accessories! The one on the left is me proudly displaying my medi-tag watch. I wore it for years, and it was rather hideous! (A red and blue snake, with my name/number engraved on the back). Sadly now my watch is much less eye-catching...

 The rather flattering photo below is here because it was the only one I could find of me wearing my bum bag... (me and my friends were doing a 'photoshoot' Top Model style on a boat school trip we went on!) Until I went to senior school, I wore this to carry my blood sugar kit, jelly babies (hypo food of choice at that point) and insulin pen. When I was in year 5 (10 years old) there was an incident when someone stole it.... rather dramatic story!  It was the remembrance day service at school, and we had sport the lesson after, so had all changed into our sports kits and left our stuff in the cloakroom. I left the bag on my coat peg (in hindsight very stupid!) but I was young and assumed everyone woulds be at the assembly. Long story short, when I got back afterwards it wasn't there. I searched the entire cloakroom and couldn't find it, so I went with three 'friends' to the head, who said that one of them needed to go with me to look for it. The irony was that 2 of the 3 people with me were the people who, in my subconscious, I partly suspected could have been the 'culprits!' We still don't know to this day who did it, but a letter was sent out to parents and everything. Although it was very upsetting for me, and meant we had to go out and buy a new meter etc... (luckily we had spares of everything), we were more scared of the thought of someone having an insulin pen. It could have  killed someone, as my average bolus at the time was about 4units per meal, and the pen goes up to 200... I don't think the school ever quite understood the seriousness of it! Ever since then though, I never leave my kit. When I went on the pump, I had a smaller bag for my BG kit, but when I reached about 13, I just put it into my school bag - when I go to lunch at school etc... I then carry my BG kit with me.


This is the picture that upsets
me the most - however, it does
help to remind me, when I ever
feel like giving up, how much I
have managed to overcome. It was
also taken on my 11th Birthday
So, back to my D-story! This is the point of my life, and the pictures, that I was really unsure about including in this. However, I feel it's important for me to - it shows how diabetes is never plain-sailing, and hopefully will be a reassurance for anyone with diabetes, who is really struggling, that things can get better; I'm here now typing this, and managed to get out of that place.  In January 2005, when I was 10, I was switched to levemir. For a couple of months, I had been suffering from really bad stomach pains (I don't think the doctors believed me) and my control was getting really bad. The hospital were apprehensive about the levemir, because it's only really meant for adults, but they decided to try it for me, as the lantus was not working well - lots of highs etc...
Me on my 11th Birthday
And honestly speaking, for the first few months with levemir everything seemed so much better (just as when I'd switched onto the lantus), even though it meant going to 5 injections a day, as I needed 2 shots of levemir, and then was still using novo-rapid for the food dosage. However, after a couple of months things started to deteriorate rapidly. I completely lost my appetite, and the food I did eat tasted horrible; by the August I was seriously thin, and. I had lost I think about 5kg  - my BMI was 14 (of course not accurate at that age, but my weight on the chart at hospital was severely under the ideal level). The hospital obviously were really worried and decided that they were going to try and get me on an insulin pump. Back then, they were much harder to get (they're funded on the NHS, but cost about £2,000-£3,000), and I was  an 'exceptional circumstance' - I would be the youngest person in my area to get one. By September, I know this sounds melodramatic, but it was my last resort. Things had continued to worsen, and I think if I hadn't been able to go on the pump, there is a chance I might have been hospitalised; there was actually the problem that I was so thin, that my DSN Sally didn't want me using the quick-sets (straight-in sets) because I barely had any fat on my stomach. I was adamant that I was not going to use the side-sets though!   

However, by the end of September I was on the pump, and below are some of the photos of me in 'early-pump' days, for example Christmas that year:

Charlotte and I (and Rudolph!) It's amazing
the contrast here to the photo of me on
my birthday where my smile is barely there, and
is more of a grimace.
I love this photo, how happy my mum looks. It's quite strange really - the reason is largely to do with that little pouch clipped to my skirt - my pump. I had been so distant before getting it, but in all these photos I look so happy - it was like they'd gotten me back.
 



Horse-riding really helped me through everything too. I started riding shortly after my diagnosis, as I had to stop dancing due to always having hypos (it was also definitely not my forte!) I loved horse-riding though - it was a really wonderful escape. 

Below are a couple of pictures of some 'low moments'. The symptoms of a hypo are actually quite similar to being drunk (hence why I'm not keen to experience the latter! People may laugh at me for never having been drunk, but a lot of it is to do with me hating the feeling of being out of control with hypos).



 
 Left is a picture of me on one of our best holidays EVER, Sani hotel in Greece, with a fruit cocktail! I vividly remember this trip, because it was when Harry Potter 7 was released - my Auntie had it fed-exed out to us! On the right is on a walk - definite 'hypo-eyes'... I also remember me and Charlotte thought the hill was like being on the sound of music, so the hypo was probably a result of running around singing "the hills are alive!"




For my sister's 18th Birthday in 2009, we returned to Disney. This created a dejavu moment with the ice-cream, and several other  'diabetes-rebellion' moments... the last picture made the Charlie Bucket resemblance even more uncanny! We had been sitting on main street for two hours before the start of the parade, to get a good view, so Charlotte went to the shop and bought this.


The following year we went to Washington DC/New York for my Parent's Silver Wedding Anniversary (rather an expensive year holiday-wise, so we stayed in England for quite a long time after this trip!) The picture on the left was taken in this amazing cupcake shop we found in Georgetown, and I ate the whole thing after a dinner of pasta... I also enjoyed a burger and milkshake in New York, and it really was so nice to feel like: "yes, I will eat that!" It's probably the period of time that I felt the most confident with my diabetes. That trip was rather eventful though... it co-incided with the volcanic ash incident in Iceland. I'll explain that story in more detail another time though, as it's quite long! The picture on the right is from my year 10 prize giving. I was so unbelievably happy when I found out I had won the Year Prize - never expected it in a million years, but I think for me it meant so much because it made it seem like it had all been worth it. I'd had such a horrible year in Year 9, with my Auntie's death and Swine Flu, and then my sister went away to Uni at the beginning of the school year in Year 10. It was so nice to think - something good has happened, finally. And it also proved that diabetes couldn't stop me. However... at the prize-giving Mr Blood Sugar thought: why not throw in a hypo to ruin your moment?! I was also part of the leadership team, and the photo on the right is from when me and my friend Amy (also on the team) read the charities report. When I walked up on stage towards the end of the entire 'event' to collect the prize however, it had gone down even more (useless fruit pastilles!) and all I could think was "don't trip, keep walking". And then when I wrote my name in the prize book, my hand was shaking so much, it looked like a four year old writing her name for the first time. It made the moment quite bittersweet, as I didn't really savour it properly. It's as if, the prize made me feel like I'd 'overcome' the diabetes hurdle, but D just wanted to remind me: "No, I'm still here!"

And finally.... The picture on the left is me before my Year 11 Ball... boy do my cheeks look extra-specially chubby! (I blame my dad for the round face gene!) That evening was again a big deal for me though. One of those milestones which I guess, for me, they almost mean more because part of me feels lucky to have reached them. Of course, I'm not seeking sympathy or being over-dramatic here, implying that Diabetes is some sought of terminal illness. But I do feel lucky, and I hope these pictures/the story I've shared shows why. I have been through a lot, and I count my lucky stars everyday that I do live at a time when there is fantastic healthcare for diabetes. The injections just did not work for me, and a few years previously the pump would probably not have been a possibility. I cannot imagine where I would be now if I wasn't on the pump, I really can't. I am so thankful. For the ball, I deliberately chose a dress that wouldn't give any sign of my insulin pump, and for the first time since I can't even remember, I was able to forget - I felt really, really happy. The picture below is from this Easter, when we went to visit my Sister in Mississippi (she's just studied there for a year as part of her degree, lucky girl!) I wanted to show a picture from now, where I'm happy and smiling with her - I've come a long way since 7 years ago, in that photo from my 11th birthday. Hopefully the next 10 years will be a bit calmer, more straight-forward... but then again, D's never been one for the quiet life! 



I have been so lucky that I have been able to have an insulin pump (7 years this September), but I know that there are still so many other people out there with T1, struggling on injections, who do not have the option of a pump. WE NEED TO CHANGE THIS! So spread the word, whether it be through blogging, videos, twitter or campaigning - it really can help make all the difference!

Thanks for reading!

Keep Smiling :)
Sophie

Love you xxx

Harry Potter: My Escape

So my AS Level exams have finished as of yesterday morning (yay!) and relief does not even begin to describe how I feel! As with last year and GCSEs, part of me feels quite shocked that I managed to make it through without any huge 'incident'. I did have a few less than perfect blood sugar scenarios. The first Spanish exam was after a morning of relentless highs, and then I was low during my English exam, and Economics yesterday - it was 2.5 (45) by the end of that, although shockingly I didn't really feel anything; probably adrenaline! It did mean though that when I went into town straight after my exam, I could have a coffee FRAPPUCCINO as opposed to a latte! (I think only those of us in the D-bubble could truly appreciate the excitement of that - It made me feel quite rebellious too!)

Once I returned home that afternoon, and thought of a way to 'celebrate freedom', the first thing I wanted to do was pick-up a certain well-known book, go out in the blissful sunshine and read. However, my parents haven't so much as put a ban on me reading it, but do become a bit frustrated when they see one of the books in my hands, for what must be the 10th time now!
Nevertheless, as one of my subjects this year was Spanish, and I was struggling a bit with it around Christmas, inspiration did hit me: my parents may be against me reading "Harry Potter and the Philosopher's Stone".... they can't object to "Harry Potter y la Piedra Filósofal"! So a few Amazon clicks later, it was ordered and I started reading. By the time my exams came, I'd only had time to reach the Leaky Cauldron, so when I came home yesterday I decided to pick up where I left off, and have spent all day today in the sunshine reading. To be honest, as I'm hoping to apply to do English at University (outside chance Oxbridge, depending on AS levels), I probably shouldn't be reading a book I've read about a thousand times! But the Harry Potter series holds a very special place in my heart, which goes beyond the amazing story and it being the book of my childhood. More that, it was my childhood.

Me with my Nimbus 2000 on my 8th Birthday!
I also got a robot Norbert the Dragon!

I do credit HP and the incredible JK Rowling (the imagination behind it all) with helping me to deal with my diabetes at an age (seven) that should have been really the 'height' of my childhood (I also am eternally grateful for her creating a heroine that made it 'cool' to like 'school' - excuse the terrible and unintentional rhyming here! Hermione was my 'role model' growing up.) I think for me it was that, as my 'real' world became consumed by blood sugar checks, hospital appointments, this food and that food, injection (the list goes on!), it was my escape. And there was also the fact the the characters had faced adversity too. Obviously I would never try and compare having diabetes to losing a parent (something I am very sensitive to as three people very close to me have lost one of their parents), but it was the fact that their lives were far from perfect. It wasn't Disney where everything seemed to have a happy ending. When I watched some of the Disney films, it just seemed like something had gone so terribly wrong in my own life; how could there possibly be a 'happily ever after'? I guess that's maybe why one of my favourites of the films is The Hunchback of Notre Dame - one of the 'darkest' ones.

Not to say that the wizarding world didn't seem quite perfect to me. In fact I became so convinced and so desperate for it to be real, that I genuinely believed I would receive my letter on my 11th birthday, and actually thought the owl must have forgotten when I didn't! Because, and oh this is going to sound quite stupid, but when I read about how Madame Pomfry could grow back bones overnight and cure dragon-fire wounds etc... I really thought that she could have cured my diabetes too. That's what ran through my seven/eight year old mind for years until it clicked that it was just a story. And I even used to have dreams about some magic potion that would have 'fixed' me. 
But then, I talk about fixing. I think that the books already achieved that. When my entire world seemed to be falling around me 10 years ago, it would not be an exaggeration to say that those books, those words, helped to stitch me back together. And oh my goodness I can't believe I'm sitting here crying as I type this... but I don't think they're sad tears. More, they're grateful ones. Because for those hours I spent reading, laughing and crying, that world was all that was real, and it made me forget mine. And I think one of the reasons I have always loved fantasy stories, and writing my own (I wrote a 30 page one in year 7 as a 'short story'...!) is because it let me escape. And don't get me wrong, for so many reasons I love my life and have so much to be thankful for. But diabetes did steal my childhood in many ways - it forced me to grow up when I still should have been allowed to be a kid, carefree with no real responsibilities.
So Harry Potter for me was my childhood. When everything just got too much, when the numbers became all consuming and my real world too 'clinical', those books gave me a sense of hope; a youthful and innocent belief that things would get better. And there was also that sense of justice throughout the books and all fantasy novels and to a further extent all great literature. That good ultimately triumphs.
 I have spent a lot of time over the last 10 years doubting myself. With type 1 diabetes, it isn't your fault, yet I sometimes wondered: why me? What did I do and how is it right that I have this when so many people can do such horrible things, and seem to get away with it? Maybe Karma will come back to haunt them in another life, but it isn't right for a seven year old to believe she is being punished for something - and I did feel like that. And at times when things aren't going well I can feel like that still. Like in those exams, I just didn't know why of all times diabetes was doing that to me. It made me feel quite powerless, and it is hugely demoralising. Coming home and picking up HP, it was like a huge black cloud had been lifted, and I felt calm again. It is like me security net in a way, where I feel safe. That's why I'll admit I cried too when watching the speeches at the premiere for Deathly Hallows part 2, and JK Rowling ended with: "No story lives unless someone wants to listen... Hogwarts will always be there to welcome you home" I was literally in buckets, because for me I will always return to it - it is that book(s) for me, and I don't think there will ever be another story which reaches out to me quite as much. It is one in a million.

There are quite a few quotes in Harry Potter which have inspired me, in relation to diabetes, and I've put down just a few of the key ones here!

“It is important to fight and fight again, and keep fighting, for only then can evil be kept at bay though never quite eradicated."
This for me is probably one of the main ones. Yes, Diabetes will most likely always be here, but it is no use giving up just when it gets a bit hard. I wouldn't be where I am today if I hadn't kept 'fighting' and telling diabetes: you will not beat me. And it hasn't, because I'm still here smiling, not having let it stop me. I suppose that then brings me onto the next quote, one of the most famous ones from Goblet of Fire:
"...when you have to make a choice between what is right and what is easy". This for me links in with the 'not giving up'. It would be easy to say 'okay diabetes you've won'. It would be easier to blame diabetes for everything and play the victim, but I have never wanted to do that; that's also another reason why I admire Harry as a hero.

"Happiness can be found, even in the darkest of times, if one only remembers to turn on the light." And funnily enough I think for me, Harry Potter was this light a lot of the time. When I had my darkest diabetes times, or darkest times in general, I turned to it: after both my Grandma and Auntie died, and when I had swine flu and became quite ill, to when my blood sugar has gone very, very high - it, like I said, helps me to escape.

I think Harry Potter for me though - there were so many characters I could connect with. I've  already mentioned Harry and Hermione. The latter for me was really just a symbol that it was okay to like school, and stood against the 'dumbing down' that can happen in society today. It's something that both JK Rowling and Emma Watson have spoken about in relation to her character, and which I 100% agree with. I've always loved school, have always been a bookworm, and it's not something I will ever be ashamed of; Hermione really helped me with that. And then of course there's Luna. I just loved her character, probably because like me she's a little ditsy! But also because she didn't try to conform, a bit like Hermione. I have been a bit of an 'outsider' at times I think. Like I've said before on my blog, I don't really like going out, drinking and doing 'normal' teenage stuff. It's just not me, and I suppose some of that is to do with my diabetes. So reading the books really gave me confidence in myself, to follow my own path and not let anyone else influence me.


Norbert and Nimbus may be gone, but Hedwig still perches on top of my wardrobe!


Back to the 'good vs evil' idea though, which I mentioned briefly earlier, I am going to diverge slightly from Harry to another famous fantasy novel series, if the letters LOTR mean anything to anyone...! I remember watching the film, and this just spoke to me so much. When I read the book later on (normally I NEVER watch films before reading the books, but I was tiny at the time!) It's the speech Sam does, and it is practically identical in the book and film version. May seem a bit cheesy, but it's something I think any diabetic can relate to, and find motivational.

It's like in the great stories. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something... that there is some good in this world, and it's worth fighting for.

And this isn't something I have always believed. I went through a period where I really didn't know how I could cope, going back to the "how could the end be happy?" But I believe that now, slowly but surely, I'm getting there. 
I think for me, what I am holding onto is knowing that I have so much in my life that is good. I have worked hard, have achieved good grades etc... all the 'technical stuff'. But I'm proud of me as a person. I know I've said already on my blog, how if I've had a bad diabetes day, I just tell myself "tomorrow is a new day". Yes, life with D is so far from perfect, but it has made me so much stronger, as I realise what truly matters. And earlier I spoke about 'fixing', but I don't really like to think that Diabetes has 'broken' me in any way; made me any less perfect or at a disadvantage to other people.
At the end of the day I have kept going - have not, and will not, let it stop me. I think that's a common theme in all the HP novels too, the whole doing what is "right", not what is "easy". I don't play the D-card, and like I've said before I think I've 'acted normal' to the point where peope can forget I have to deal with all this stuff, which can be hard at times. And that's why, for me, the Harry Potter books are worth far more than any Austen novel (I know she's 'Austen', but really do not like her novels!) But it's like my other favourite novels, Jane Eyre and To Kill a Mockingbird. They are about adversity, and how important it is to keep going even if the road seems too dark and winding. There is always a way for it to be good again, just as long as you persevere and keep smiling as you do so.

Books for me have been so important, and I think in writing this I've justified why I want to study English at University! I couldn't imagine doing anything else. Durham also appeals to me a lot, as they have a Harry Potter/Fantasy Novel module!


To finish, I wanted to share a poem I wrote on Christmas Eve two years ago, titled Fairytales. (I was still relatively new to poetry, wrote this 'open-mic' style and haven't changed any of it since, hence why it's not the best!) I wrote it after watching the Lion the Witch and the Wardrobe, and was reading Harry Potter at the time too.


Just words that were written;
they're not real...
but they are -
at least to me.
They are the places I escape to,
the dreams in which
I long to hide.
I can't let them go.
It is not ignorance
to cling to them,
Naivety to still believe.
Regardless of what you say,
telling me that I must
leave childish thoughts behind;
they are part of my reality,

I cannot let them die.



(And finally!) I just wanted to end on a Dumbeldore quote from the final book:

"of course it is happening inside your head, but why on earth should that mean that it is not real?"

I just want to take the time now to say now how thankful I am to JK Rowling for writing these books - I cannot begin to describe how much they have helped me, and you will always be one of my greatet inspirations in life.
I am a dreamer (my poems alone can tell you that!) Maybe because my life is so 'real' with no rose-tinted windows? Maybe simply because I had to grow up too quickly? But for me dreams and imagination are so important, and yes I can sometimes get lost in them, but I won't ever let them go. I think all along I knew Hogwarts wasn't real, but it was my only real hope back then for a cure. And mainly it made me happy, for those few years believing; similiar to other things you believe in as a child, and I believed in it all to the extreme! And for me it was, and in a way still is real, because it made me feel something - made me hopeful. And I wouldn't trade that for anything. Because I still am hopeful; still dreaming and still smiling. 
I just hope that everyone else is too. I hope that, if you haven't already, that you can find your inspiration too, whether it be in the pages of a book, the pictures on a screen, or just the world inside your head. But it will be there :)

Sophie x


Diabetes Blog Week: 'Diabetes Hero'

Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??


Okay, so when I saw this topic, I immediately thought. Well you could go with Nick Jonas, Steve Redgrave, Halle Berry... celebrities who, in the public eye, have shown that diabetes should never stand in the way of what you want to achieve.

However.... for me a 'diabetes hero' is a role model, and for me I could not have found better d role-models then those whose blogs I have read in the last month. It was reading those blogs which inspired me to start my own, as for the first time in my ten years as a diabetic, I felt that someone finally got it. What did make me slightly wistful was when I read on a lot of the blogs how people had been to these diabetic meetings/gatherings or whatever you want to call them! Simply put, that they knew other diabetics. And the reality is that for me, I'd never properly known anyone else diabetic until a month ago. The closest I get to feeling like someone understands me is when I read Balance Magazine every month, yet now it is so wonderful to see people put my thoughts and experiences into their own words; to feel like I am not alone with this. Of course I have to name drop three wonderful blogs (the first 3 I came across and which really spoke to me) and that's: Kelly, Kerri and Karen - the three Ks! Their blogs have been so inspiring for me, particularly as they are older and I am at that point in my life where I'm making the transition from child to adult. It really is so nice to read about how they are coping with D, and does give me a greater sense of hope for the future. And then of course there are the other wonderful blogs of Hannah, Daisy and Jess, which I am now hooked to!

However, I do have to give a huge thank-you to three people in my life who have been so incredible with mym diabetes: my Dad, Mum and Sister Charlotte.


In Disney, 2 months post
diagnosis (I'm 7, Charlotte's 10)

My Dad especially worked from home since I was diagnosed (he is an architect) and is always there to bring in supplies to school when I'm being ditsy and forget (it does happen!) He orders all my supplies and collects them from the doctor, and although he does get over paranoid when I'm ill, he does look after me so much and I will be forever greatful to him for that. My mum has been wonderful too, having experienced all too many nights of staying up as I ever so delightfully am throwing up as a result of a failed set change and sky high blood sugars. She was also the one who diagnosed me when I was 7, after my GP proved completely incompetent...!

I think though, one of my greatest diabetic heroes would have to be my sister Charlotte (I'll probably do a post about her sometime soon, but will do a brief overview now!) She has been my rock all my life. She has never been anything other than supportive and caring, and I would completely understand if she had shown some resentment over the years, when diabetes has been a bit all-consuming. But through all the different injection regimes and rubbish that's happened, she's kept me going and I couldn't have asked for someone more supportive.  

I think though, another reason why I am so thankful to my family, is that I have never really been very open with my friends/peers/teachers etc... about diabetes. It is something which I to some extent regret now, maybe because I have seen how open some people have been on other blogs etc... But it's meant that, when I'm at home, the happy-D mask is thrown off. At school I put all my energy into smiling through everything, and that means once I get home, and my BGs are going a bit all over the place, I can have really bad mood-swings and am probably slightly unbearable to live with at times! The morning lows especially can worry my mum and dad, because I often don't speak. But they still support me, and never treat me differently. Sometimes I wish they would be a bit less "what's your blood sugar" everytime I am remotely 'off' in terms of mood, but I completely understand why they are like that. I'm not the most vocal when it comes to my diabetes, as I like to believe that I can cope by myself, and that I'm not burdening them. At the end of the day though, I couldn't have done it without them, so I count myself very lucky in the respect. They always motivate me to achieve to my best, and never see diabetes as a barrier to anything I hope to do in life. And yes, diabetes may be a very dark cloud that I really wish wasn't there, but the silver lining has been in part discovering how truly amazing and supportive my family is; so thank-you mum, dad and Charlotte - I love you so much.

Me and Blue stuck together
like glue... well technically
sticky tape - glue could prove
rather problematic come
set-change day...!


Sophs x



 
*Oh, and of course my last diabetic hero would have to be my pump Blue; I couldn't imagine my life now without him, so thank-you also to the inventor of the Medtronic insulin pump - I don't know your name but you're  a legend and pretty much a life-saver! :D

Diabetes Blog Week: The D-Photoshoot!

Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.


So I spent my day trawling through ten years of photos, plus taking my camera to snap some new ones, and in these past 8 or so hours there have been many smiles, laughs and tears. I'm approaching my 10th diaversary in about two weeks now (should celebrate with cake...!) so I'm actually really glad I got to do this. First I want to share some general diabetes pictures: equipment, sets, pump etc... but then I later this week I might share some photos from the last ten years: 'highlights' of my life with D, including lots of food pictures! But first, here are the 'diabetes' pictures, and quick note if you can't stand needles, blood etc... don't read/view this!


So first, lets give an insight into the every 3 day joy that is the set change...




 Here's one I yanked out earlier...
    old set gone!



                                      New Set's ready for the off!
deep Breaths...IN!


And then for a little bit of D resourcefulness. Bought this playsuit last week, which conveniently had two pockets at the waist. So with a pair of scissors and some pretty bad left-handed cutting Mr tube can now crawl through a cap-sized hole in the pocket, so my pump can stay discretely in the pocket with all wires invisible!



 


Another pic of me and 'blue' (I was 10 when I named him, in my defence...!) Don't we look great together :) such a a happy couple. I may want to give diabetes a good old kick up the backside every once in a while, but I don't hold any grudges towards my loyal insulin pump :D One thing I would love to do in my life is the try and help more people to have access to insulin pumps in the UK. I understand that the NHS budget is tight, but so little funding is given to type 1 relative to type 2, and if they are seriously worried about the cost of complication in the future, surely the insulin pump will helpreduce this? I think everyone deserves to have a Blue, and I couldn't imagine life without him :D





So this is the picture that was quite hard for me to share, but I've decided to because it's something I have been so self-conscious of. Before I started  using the quick-sets and putting the set in the lower-side of my back about two years ago, I used the side-sets in my stomach. It has left scar tissue (the little white dots) which look like they're permanent. Luckily my stomach's stopped being bloated, but it does mean that I've never worn a bikini/crop top before, because it is something I am very self-conscious off. That is going to change today though, as it is not something to be ashamed of! At the end of the day, the pump has changed my life and helped me so much, and scar tissue really is only a very small price to pay considering how much better my life has become thanks to 'blue'.  





Testing my BG. Feeling low so this might not be good!

Ok so blood sample is ready  - always try and make sure it's a big as possible, because I've wasted too many strips with the stupid E2 message, when the sample isn't big enough. So here goes...
...Talk about playing up to the cameras - first decent reading today! Unbelievable..... well guess blueberry muffins are a yes for dessert :D


And then for a delightful revision break... a bit of blood sugar data! The second picture is my data from the two weeks ago, and then the first from my CGM a while back - the lines on the graph represent different days, so hopefully I can see some sort of day-to-day pattern...! I just downloaded data today but my parents weren't there, so I couldn't figure out how to print it...! :-/ The CGM graph from last week was a bit better than this one pictured, and the blood sugar meter readings (second picture) have gotten a bit better - a few more hypos (so I suppose not so good in terms of what the doctors will think at my appointment...!) but less highs. And I hate highs, so I'm pleased with that :)



So yes. Hopefully these pictures have given a bit of insight into my D-world - it's so much fun! Maybe that is why I'm such a sarcastic person - I have to find some way to make this all a bit more bearable! To be honest though, it really isn't that bad. All the set changes, needles, blood, downloading data etc... that doesn't bother me. I'm not quite sure who did a post about that yesterday - maybe Jess at Me and D? Anyway, it was about how the real hard bit is the emotional side. That's what the pictures can't show - the only one which I suppose does in a way is that last two pictures. Seeing that, it can really mess with your head. It just makes it seem all the more impossible. But I'm getting there I think! And the CGM data I looked at today definitely did show some patterns, so I've made some changes and just fingers crossed now I guess! May put another one in tomorrow actually, just to get me through the last two exams next week - not having another incident like my English exam Wednesday, where I had a hypo - was NOT happy!

Will maybe post sometime next week with some more 'personal' photos - a bit of a photo diary of the last ten years, to hopefully give people more of an idea about me and my diabetes. And of course I will share my 'D' story sometime soon as well, as I realise I haven't done that yet!

See you all tomorrow for the last day of Dblogweek!

Sophie

Diabetes Blog Week: Introducing 'D'

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.






Okay! So first off, please excuse the less than 'sophisticated' style of writing today, as my blood sugar is currently 3.3 (60) which is completely bizarre as I had pasta for dinner! And I guess I'll start there really...

1) Diabetes is not a science. And by this I mean you can spend your entire life on a continuous glucose monitor, looking for 'patterns', eating exactly the same thing everyday etc... and there is no way to predict what will happen. I under-bolused by about 1 unit for dinner, just because I'm religiously trying to avoid lows at the moment (hospital appointment in 10 days and they're breathing down my neck about hypos), and it still went low. What's more, 15 minutes previously it had been 6.6 (120), and I only tested because of the 'low-signs'.
And this unpredictability is one of the hardest things about diabetes, which I would like people to know. How demotivating it can be when you give so much and get so little back. For as long as I can remember I have been a perfectionist, always feeling that nothing is ever good enough, and I know that this is a result of my diabetes. I don't think anyone who is not diabetic can truly understand how a simple number could get to you so much, but it does. A low or high first thing in the morning (especially a high) - I know this sounds cliché but it is like a stab in the heart. You just think why?
Especially Monday before my first AS level exam, I was like why today of all days?! It felt like diabetes was mocking me, showing once again that I am just the passenger and that, no matter how hard I try, he will always be at the wheel steering me along his own impossible road. Feeling so out of control, my friends and peers may mock me for not being happy with a 19/20 for an English Essay - some may even think I'm attention seeking - but sometimes that does genuinely feel like it's the only thing I've got. With teachers, I need to hear them tell me to my face that I'm doing well, because everyday it seems like Diabetes shows in his own unique way how much I am failing  - how far I fall short. Today for example I was meeting one of my teachers to discuss my poetry, and he never really said 'well done' or 'these are good' or anything. Maybe I am just not a good poet (that's fine - bit soul destroying but best to know the truth now!) but I just wanted something. So that's what I'd like people to know I guess -that this need for praise and this feeling that I'm not good enough, it's not because I'm obsessive or a teachers' pet - it's because I need to feel like I've achieved something. That although a bunch of numbers on a screen may mean nothing to you, they can break me and doing well at school etc... it's the only thing that helps to stitch me back together I guess. It can never truly fix me - no amount of good things can do that, and make me forget about D (D has a way of making sure he isn't ignored for long!). For example, when I'd won the year prize two years ago in Year 10, I was so excited, but my BG went low so all I was thinking about when walking up on stage, was ok keep moving feet, don't trip... not exactly how I'd hoped that moment would be! And then when I wrote my name in the book... looked like a four year old who's just learnt how to hold a pen!

2) A few people have addressed this in their blogs, including Jess on her Me and D blog. That I am a diabetic. Pretty obvious but I'll explain! This is 24/7. Every day, every minute, I am diabetic and there is a tube inside of me keeping me alive. That is the reality. And of course the last thing I want is for people to look at me and think 'diabetic', but at the same time I want some recognition of just how hard this is. I think it's gotten to the point where we're all so used to it at home now, it's just another thing. But for example today when my parents go on about testing strips on my floor, getting at me for that - my mum was in my room saying this just as I was reading through all the blog posts for today's topic. And part of me did feel like screaming "Is that REALLY important!?" I have a frickin' tube stuck in me, and you're worried about some strips! Don't get me wrong, I love my parents and cannot begin to express how wonderful they've been, but I think it's just been so long that it's easy to forget - easy to imagine that I'm used to it now. And, yes, I have grown more used to it. But that doesn't mean it is any easier - each day is a hurdle and at the end of everyday I will most likely have experienced one hypo (below 4 - 72) and one above 10 (180). All of which I can feel, when it's at that level.
I've never made a big deal out of it. Like Karen said in her post, maybe I've made it seem easy? But it is HARD! It's a complete emotional roller coaster, and sometimes I wish maybe my teachers could realise that too? I don't want sympathy, but when I'm doing well despite the crazy blood sugars and extra time I spend with set changes, downloading data and making changes etc.... not to mention the hospital appointments - like I've said, I'm feeling this pressure to avoid hypos, because the last couple of appointments they've been adressing that. Apparently I should only be having about 2 a week, and it's often more like 2 a day... so yeah, not great! And that's another thing - sometimes I feel that my diabetes is going well because we don't make a fuss, especially at school, but behind closed doors the reality is that I am having some difficulties, and it's very far from perfect. So sometimes I would like a little bit of credit for how hard I'm trying I guess. 
With diabetes, I don't ever stop thinking about it; it's always there, that little voice in the back of my head. And that's another thing with my peers, which I mentioned in one of my earlier posts. Yes, I may never have been drunk before. And yes, to them that may seem totally pathetic for someone who is 17! But if they'd had a severe hypo before, and knew what it feels to be so out of control with a high BG after a failed infusion set - they may not be rushing to try it in a hurry! I may seem dull, I may seem too controlled, (and therefore like a middle aged woman!) But you know what? I don't care! At the end of the day, I'm diabetic, so deal with it! But I think mainly, like Jess said in her post, when everyone's laughing and joking and everything, I'll join in and I still love life and enjoy it and everything - but the voice is always there. And I always feel like I can never truly break out of my shell. And then whenever cake's involved, what may be a fun lesson with food to everyone else is for me a debate: should I, shouldn't I eat it? What have my BGs been like today? What homework do I have tonight so can I afford to take the 'high BG' risk? Everything is a weighing-up-the-odds game, a Balancing Act. Nothing is easy, and yes there is a degree of sadness that my life will most likely always be like this, but then there are some positives I will come to next...!

3) Finally - this isn't a life sentence. Like I've said in my posts so far this week, Diabetes has made me a stronger person. I remember how people have said to me in the past, when I've been scared of a spider or not gone on a roller coaster, or have been fretting over an exam - they've suggested that I'm not brave, or that I'm not strong. Until you've been me in an exam with a low blood sugar (Wednesday) fighting to keep going even though you're shaking and feel so weak you might collapse (not an exaggeration); until you've spent your whole night throwing up after a failed set change, mouth so dry even though you've drunk water by galleon, and then you come into school the next day smiling like everything is normal; until you've put a needle in yourself everyday since you were 7 years old - I could continue this list for a while, but will stop here! If there is one thing I can be proud of myself for, it's how strong I am. But it's a strength and a bravery that is different to the 'stereotype'. Yes, I'm terrified of woodlice and spiders and yes upside down roller coaster freak me out (not least because I'm worried my pump will fall out and then there's a few thousand pounds and my 'life support' gone!) But I don't think many people are as brave as me in terms of putting on a smile even though inside you feel like crumbling. And I always try and stitch myself back together, because I have to. Because I can't afford to be sad when this is my life - there's no point being wistful because I can't change it.
I also think though, diabetes has made me a better person in terms of learning what's important in life. I'm not going to waste anything, because nothing is certain in life. I went from a normal 7 year old reading her Harry Potter books one day, to lying in a hospital bed faced with a lifetime with a chronic illness the next. I know not to take anything for granted! So I guess that's why I can become frustrated with people who complain how hard their lives are, saying how 'no one can understand how I feel!' Or the facebook 'F my life it's so tragic!' because maybe some idiot boy has dumped them or they haven't got a gazillion likes on a facebook photo... well to put it bluntly, you won't be getting much sympathy from me! And I'm not trying to guilt-trick anyone here, I'm just trying to give some perspective. 

Sometimes I worry there's this perception of me trying to be 'little miss perfect'; doing everything 'by-the-book' and that for some people it may seem fake maybe? And yes, to be honest it is. Because underneath all the hard-working, school-loving, never-goes-out/goody-two-shoes exterior, there is still just a seven year old girl who had to wake up too quickly, and is still trying to find her way in this scary and uncertain world she was thrown into. And it's never going to be easy. I will stumble and will never truly be 'in control' of D. But I will pick myself up. And I guess that's the final think I'd like people to know. That I'll always pick myself up - those of us with diabetes, like Kelly said in her post (which is amazing!), we're resilient! I've been knocked so many times that, like my poor fingers, I'm pretty much numb to the pain! Yes it still hurts, but I've learnt how to deal with it.

So yes, I hope that if you didn't know a lot about D before, that your eyes have been opened a bit! I just want to continue to raise awareness, so if you want to retweet this or some of the other blogs I have mentioned and linked, than that would be wonderful: continue the D-education! And sorry about the length; when my BG's low I actually act a bit hyper, so ramble on aimlessly and, of course, no one was here to shut me up!

Oh but just lastly (really will stop after this!) I just wanted to share one of the poems I wrote about my diabetes (wrote it about 6 months ago), that I felt fitted into the whole: 'beyond the numbers' emotional side of diabetes. It's about post-diagnosis and the loss of childhood really, like most of my recent pieces on my poetry blog. So yes, it's not the cheeriest (although I have written worse!)and definitely not one of my 'best' poems, but wanted to share it anyway!

Ivory Tower

My soul hides away
in an ivory tower.
It left me on my own;
to walk in darkness all alone
The road you built with hands that broke
the dreamer's heart in two,
Which splashed blood paint on the white rose -
a thorn-pricked red that within grew
a blackness unbeknown -
little girl overthrown.

She treads, a shadow in a world
that swallowed childhood fantasies;
which cannot be painted
in bluebird strokes,
nor lead her back to 
youth's daffodil clouds.

She is looking  for
her ivory tower;
the place her soul resides.
The fairytale she longed for,
the life that lived in dreams.
Invisible as she stands here
her wings broken - 
the crossroads near.

*

Sophie

Keep Smiling :)

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