27 May 2012

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 Fil√≥sofal"! 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


21 May 2012

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

20 May 2012

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!



18 May 2012

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.



Keep Smiling :)

17 May 2012

Diabetes Blog Week: The Ditsy Diabetic

Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Trying to choose just one thing might prove rather difficult, so I may have to bend the rules just slightly! To be honest, there are a gazillion things I could do better, but to do all of them is easier said than done; after all, there's being 'good' and then there's having NO life! I think probably the thing that I should do more (inspired by a post I read yesterday on changing lancets), is to change my lancets more often for my Blood Sugar checks. My poor fingers are completely wrecked now, and I've still got (hopefully...!) another 50+ years to go. So, yes, to avoid my fingers making me look like a cave-woman, I will try to remember to change my lancets. I think the trouble is that I test so much (about 10+ times a day when not on CGM). And that's another thing I think I could do better. Sounds a bit bizarre really - I was always taught test every two hours! And I've done that religiously since day 1. Now I think though, I've become a bit obsessive to the point where, if it's high or low, I'll constantly test to see if it's moving (this also makes my data look really bad when I go to see my DSN!) So No. 1 - change lancets more often! No. 2 - test less! The good thing is that my posting the above photo it had made me feel rather ashamed and therefore should motivate me into doing something! I never had a problem with injection needles or anything, but this just slips my mind so easily.

Oh and another BG thing is also washing my hands before testing. Often when I test it is a spur of the moment I don't feel quite right. I tested about 4 times during my English exam today (it was low twice.. thanks diabetes!) for example, when I'd been eating gluco tabs to correct the lows, and obviously my hands will then be coated in gluco-tab powder. So, starting from today, I'm going to put hand wipes in my bag so my hands are always sugar-free for testing! I do get a lot of spurious readings, and don't think it's fair to take it all out on my meter (he does take a lot of slack!) Oh, and then there's the mess! I'm naturally a messy person, and it drives my family (especially my sister!) crazy. So couple a natural ditziness with having all my medication: needles, set changes and strips... yeah, the inside of my drawers and BG kit can look a bit like a building site! (The picture on the left of my BG kit is a 'tidy' day, as I've been trying harder since my exams started - still got a way to go by the looks of things! Right is my set drawer - that one my mum finds particularly frustrating... should probably tidy it tomorrow before she sees!)

Hmm... I think that's the main ones! I guess though, one thing I would like (which links to the testing less) is just to chill a bit. Now that I'm about to apply for Uni, and starting to take full control of my medication. I think one of my failings is not giving myself enough credit, as I mentioned yesterday. I beat myself up over the tiniest things, like today in the exam. I felt so mad with myself, even though I'd underdone my lunchtime bolus thinking that, if it was slightly high, at least I could fix that easily. A low can just completely knock you. It dipped down to 3.3 (59) about half way through (the exam was two hours), so I quickly got two gluco-tabs down my neck, and carried on. And at the end, I was so angry that this had happened, but then I realised that it was over, I had gotten through the exam and stayed calm. And I wasn't going to beat myself up about it because diabetes does just sometimes have a mind of its own - I often see it as the rebellious teenager (in place of me and my 'goody-two-shoes', controlled life, funnily enough as a result of being diabetic!) So I'm going to work really hard to try and just stay calm, and learn when my best will have to be good enough. At the end of the day and can't do anymore, and it isn't fair to punish myself for something which is out of my control.

So that was more than 1! But maybe I'll give an update in a month's time on my progress, not that I have high expectations! I'm sought of there with the testing less, thanks to having used the CGM last week, but as for the others - most of them are habits I've had for several years now, so doubt they're going any time soon (and it's not helped by the fact I'm unbelievably forgetful).... I am going to try though! :D



15 May 2012

Diabetes Blog Week: In the Driving Seat

"Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well!"

So today's topic also poses a challenge for me in that, being such a perfectionist, I seem to dwell on how everything could be 'better', and never really give myself any credit. However, after much contemplation, I did come up with one thing I am proud of myself for: not letting diabetes go in the driving seat.

I know I did a post a couple of weeks ago about how I don't have any shame about being a diabetic, and I completely stand by that. I have (to some extent) 'embraced' by diabetes, if you can call it that! Especially in the last month since I joined the dblog community, I have discovered this whole new world where my diabetes experiences aren't just ones which I have. I remember reading the diabetes comebacks on Kelly's Blog  and having the biggest smile on my face from beginning to end - personal favourites have to be:

Comment: Man, I could never be forced to watch what I eat!
Response: Yes, from the looks of things, that's quite obvious.

Question: You have diabetes?? COOL - Do you know Nick Jonas?
Response: Yes, and we're very good friends - we're actually meeting at Starbucks in 10 minutes. Want to come with?

So yes thank-you for Kelly as that did just make my day when reading, and I have the page bookmarked for a rainy d-day :)

However back to my 'proud' diabetes thing. I think for me it is mainly that, as much as diabetes may knock me down and often makes me feel like I am just not good enough, I'm still here and smiling. That for me is my way of saying You will not beat me. There are times when I do just think: okay, you've won - made your point! As it does seem, whenever I'm trying really hard to get control, that diabetes has its little rebellion.

Yesterday for example I had my first AS level exam (Spanish) and woke up with my Blood Sugar at 13.4 (241). For the past several months I've probably had my BG at a low reading 50% of the time, yet yesterday I hadn't had a reading below 10 (180) until an hour before my exam. And then of course, because I'd been pumping insulin through all morning, it  dropped from 10 to 4.8 (86) in the space of an hour, during the exam. I'd said to myself that if I had blood sugar issues I would say something and stop the exam (the teachers have said I could go up to the medical centre to lie down, and then finish the paper there) but it wasn't like it was so bad that I needed to do this. It was just frustrating that, when I should have spent the morning staying calm and having a proper breakfast, good old Mr D didn't quite feel like that.

What I'm proud of though, is that I did it. I didn't kick up a fuss, didn't let him control me. And all through my life that is what I've tried to do, especially at school. I'm the girl who laughs off a hypo, can be quite quiet when it's high but is always careful to never let diabetes hormones and mood-swings get too out of control! So my peers and teachers have never really 'noticed' it - and this is not a criticism of them, but how I've chosen to deal with my diabetes.

 I remember it went up to 20 (360) before my GCSE drama performance, but I didn't want to drink too much fluid; would be a bit awkward half way through the performance to have been like "I'm sorry Mrs Examiner, just need to run to the toilet!" So by the end of the 40 minute performance my mouth had gone so dry, and the only thing which got be through was adrenaline, even if I did feel like I was going to throw up towards the end (not sure the rest of my group would have responded to that so well!) And, without sounding like I'm showing off here, but I did get an A* for my drama, which for me was a real 'triumph' against diabetes. Sometimes it can feel like he has a vendetta against me! I just want to say what have I ever done to you?!  I haven't let diabetes stop me in anything. And having had it since I was 7, I think I've been good at not ever 'using' diabetes. Considering everything I have been through, there are times when it has been so tempting to play the sympathy card - I would be lying if I said I had never considered it, when I was feeling really awful. But I never have. And I'm not so sure many people in my position wouldn't have. That's why I get so infuriated with people my age, who make excuses for everything and 'play the victim' - try living my life for a week before you do that! So I am proud of myself for that.

And finally, I guess as I am approaching my 10th 'diaversary', I've been reflecting on everything I have been through. The numerous different injection regimes, getting the pump, the countless highs and lows and times when diabetes has gotten the better of me. But I am proud of myself in how I have dealt with it. Doing my own BG tests from day 1, doing my own injections (which, in a normal and fair world, no 7 year old should have to go through). And it isn't fair, it isn't right. But I've done it. I've done it without any airs and graces, and I don't feel I give myself enough credit for that. Yes, it isn't perfect, but it never will be. And as much as I can feel like a failure at times, everything I do for my diabetes is something extra that I do, that 'normal' people don't have to deal with. It is all an effort and takes a lot out of me. But I'm still here, still dreaming and still smiling, because I will not let this break me. I think this has only made me stronger (ok, now I'm starting to sound like that new Kelly Clarkson song Stronger!) but it has. I have 'achieved' so much with my diabetes, and for anyone with diabetes I really think that this is something which can be forgotten, but that should be acknowledged; not just by other people, but by yourself.

So to everyone type 1 diabetic out there, be proud of yourself! I've really loved today's blog topic, as it is not something I ever stop to think about. So thank-you again Karen :) and see you all tomorrow!



10 May 2012

CGM: It's a love-hate relationship

So I am currently on day 3 of the continuous glucose monitoring, and although for the past two days it has been a very happy union, right now I'm counting down the days until I can get a divorce! Because the very reason I love the CGM is also why it pushed me this afternoon to the borders of insanity - a) it catches everything but b) what it catches isn't always accurate!

Maybe I am alone in this experience, but the medication you use eg: meters, sensors and of course the insulin pump - they can provoke quite strong 'human' emotions! Ever since I got my insulin pump I've become quite 'protective' of it (it even has a name 'blue' - in my defence chosen when I was ten!). As much as it can be (unfairly) subjected to many tantrums and not so mild expletives, at the end of the day you could call it my 'saviour' - (as cheesy as the sounds!) it has made my life so much better, and did 'save' me; I was very ill before I got the pump, and it was basically the 'last' option. The same I've found is also true, to a certain extent, of my BG meter. When I got the CGM for the first time, it was so scarily accurate that I looked on my meter as completely useless and couldn't imagine having the sensor only ocassionally, to help adjust my underlying basal patterns. However, the second sensor I did last October woke me up to the reality that the sensor isn't perfect! Those of you familiar with the sensor will have experienced the arrows pointing up and down next to the reading, indicating what way you are 'headed'. You can also have the option of "predictive alerts", which is basically code for '"let's give you 0 hours sleep and make you completely paranoid!" That October I was woken up the first night  no fewer than 6 times by what sounded like a fire engine; my pump telling me that my blood sugar was below 2.2 (40) - tested on my meter and it was 6 (110)... I instantly felt an overwhelming sense of guilt for 'rejecting' my ever loyal meter, and if I'm being honest, in my sleep-deprived state also felt quite betrayed by the sensor! The predictive alerts were swiftly turned off, and I spent the next day furiously trying to calibrate the sensor with my meter, to no avail.

When I finished my first box of sensors, there was an issue with supply which meant that the next box didn't arrive until April (5 months later!). The one I did a month ago was another disaster, so I was reluctant to try it again soon after that. However, a combination of my AS Levels being next week and my supply of testing strips rapidly running out (I test far too much - paranoid diabetes!) meant that I decided to try the sensor again on monday. And what followed was two days of diabetes 'heaven'- whilst my meter told me I was 11 on  the first day, my sensor told me I was 8 and dropping, so Mr meter was once again relegated to the passanger seat with his 'inferior' data. I've loved being able to 'stop' hypos and highs through seeing the graph. Although, I don't have the predictive alerts on as I cannot be doing with lack of sleep at the moment, I've got the setting called "rise/fall rate", which tells you if you sugars are rising/falling quickly; however, that is the thing which caused our very big falling out today.

I Woke-up, everything was great. BG normal during the night for the first time in ages (not one single hypo). However, it had gone a bit high mid-morning - up to 13 (230) - and normally I wait to test about 2-3 hours after breakfast because it comes down naturally by itself, so this just made me unecessarily anxious and guilty, the feelings I normally get when faced with highs. Nevertheless, like I said it came back down without a correction bolus, and by lunch was perfectly stable. When I went to do my lunchtime bolus though, I panicked when I saw what I thought were air bubbles in the tube, so I disconnected just so I could see more clearly. Turned out it was just a trick of the light, but when I went to connect again it just wouldn't connect - the cap wouldn't screw on. This has happened a few times to me before, and I have no idea why, but it meant that I did a mad sprint to the other side of the school to the medical centre to change my set (+ a lot of stairs, but good way to compensate for the lack of insulin!) and I had 10 minutes to go before my English lesson at 2pm. By this point I still hadn't done my lunchtime bolus, and the nature of the pump is that your BG rises very, very quickly if you're not connected, as all the insulin is novorapid fast-acting; this meat I was panicking A LOT! The medical centre was an uncomfortable experience in itself, where the nurse seemed to find it necessary to stay and watch me do my set change and practically refused to leave the room, although I kept throwing not so subtle hints! She also felt it necessary to ask the question "does it hurt!?" just as I clicked the inserter and went to take out the needle, and then commented on how I "flinched" when it went in...! Good to know - does she want to try it then?!

Regardless, set was in and I felt calm after my initial panic, and I thought to myself: the advantage of this sensor is that I'll be able to see quickly if my set isn't working. My english lesson just after was therefore spent with my eyes fixed on the graph, waiting for the 6 minute 'update' from the sensor. It had gone a bit high (11) due to the delay in my lunch bolus, so I had to watch everyone in my class eating the cookies I'd baked the night before, staring longingly at the box! (Wasn't willing to risk it though!) BGs were good though, bobbing along at about 8 (140). By 3pm therefore, 1 1/2 hours after the set change, I was confident that the set was working, and therefore proceeded to walk into town as I needed to buy some last minute exam supplies (bulk packs of black biros, and for my lucky meter his own clear pencil case - exam regulations!) Half way down to town (it's about a 15 minute walk ), my pump starts screaming at me and what do you know - the sensor says my blood sugar is 12.7 (240)  with, not one, but two arrows pointing up...! So I sprinted the rest of the way, into the nearest starbucks toilets to wash my hands and then test my blood sugar - 6.7... I thought, that can't be right, so re-tested (with my last strip, as my hands had been shaking so I had had about three 'false' tests - blood sample wasn't big enough) and it was exactly the same. This meant that, not only had the sensor lied to me (and in my agitated state that was something I took to heart quite strongly!) but I'd run out of the test strips I had been rationing, so had to go to boots and pay £30 for a new box - thanks for that sensor! It really does make me realise how much I value the NHS in getting this on prescription, but also a lesson learnt that I need to stop testing so much! (What infuriated me though, was that I genuinly felt 'tricked' by the sensor - one of my main motives for doing it had been because I knew my strips wouldn't last me until my prescription came.)

So all in all, my sensor is being given the silent treatment right now, and I've made sure to test again this evening to make sure it's calibrated ok - it's still a bit off kilter, now too low! What I have learnt is never to 'trust' the sensor whole-heartedly though. I admit I am very fickle, as  for me my loyalties will lie with whoever (meter or sensor) gives me the most accurate information - or maybe, if I'm being truthful, the information I want. The sensor doesn't hide anything. As great as it is to be given a complete 'video' as opposed to the meter's 'snapshots', in order to help adjust basal patterns, I don't think I could survive in a long-term marriage with CGM. I confess I am a complete control-freak with BG readings, and it is very easy to become obsessive. I know it's the reason I'm such a perfectionist in life - people can laugh at me and think i'm "attention-seeking" for never believing 19/20 is good enough, but that's because I spend my life chasing  'perfect' numbers, and always seem to fall short. The CGM just highlights this I guess.

Not that I'm condeming the CGM in any way. I'm sure tomorrow we'll be best friends again and all will be forgiven. I think, though, I don't give my meter enough credit, in terms of its pros. At least I can choose when to test. And of course  I will always test when I have low/high symptoms - I won't 'avoid' testing to make my readings 'appear' better, as I don't see any point in sugar-coating - but I can still have a life! The picture on the right (showing what happened this afternoon), for example, is enough to drive anyone crazy, and looking at it I would naturally think my set must not be working - it really panicked me, and did make me feel like I'd 'failed', and all too common feeling with me and diabetes. I don't think it's good or 'healthy' for me to spend everyday with eyes fixed on a screen, chasing something which, being the perfectionist I am, will always be unttainable and never quite good enough. You can never have 'perfect' diabetes control, and I think that's something I need to remember and accept. I'm glad I've got the option to do CGM, and I've definitely already gathered data which will be useful (for example I know I might need to cut my basal back before lunch, and maybe put my breakfast bolus in earlier). Overall though, I think the meter is better for me day-to-day - yes it's not quite as 'up-to'date', but it works for me. Everyone is different after all, and no two diabetics can be placed into exactly the same box. For me, it's about finding that balance between control and acceptance , and I think slowly but surely I'm getting there. It will never be perfect, but then is anything in life? It's about making the best of what you've got, and to always try and do it with a smile on your face - even on my worst D-days, I remember that tomorrow is a new day, and one that I will face stronger with diabetes alongside me, not against me.

*Oh, and just checked the CGM graph for the last three hours:

I think all will be forgiven sooner rather than later! :D

Fingers crossed for the next couple of days that diabetes will be nice and considerate for my revision - that would be a first though!
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