23 June 2012

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.


17 June 2012

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 :)

Love you xxx
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