A blood test tale

Diabetics inject ourselves because we have to, we tolerate the pain from infusion sites and finger pricks because we have to. We're brave, but only because we have to be. I've always generally been ok with needles thankfully, I'm not actually that bothered by them and I think the fact that I once had 3 ABG tests in one wrist all on the same day with out flinching shows that I can handle a needle or two.

However, that's not to say that I don't get the slightest bit nervous, even inserting an infusion site, something that I have done hundreds of times, can cause my heart to race a bit! It's the thought, it's thinking about it hurting that makes you nervous- I've learnt to jump straight in and just do it without giving it a second thought.

Today I had to have a blood test done, I've had many many blood tests in my life that I can't actually count how many I've had. Yes they're more invasive than the finger prick tests that I do multiple times a day, but I'm ok with those too.

I'm ok with them when the phlebotomist knows what they're doing.

Now, don't get me wrong, everyone has to practice at some point but when the person is literally shaking and loses your vein it's a bit unsettling. I don't think I've ever perspirated quite so much during a blood test. It went a little bit like this:

*Trainee phlebotomist and expert phlebotomist both look at me*
"Do you want numbing cream?"

Me: No, I'm fine.
*Both nervously laugh*

I should have known, I just should have known she was learning! Maybe I should have asked for the numbing cream...! Anyway, it took them both a good 5 minutes to find my veins, there was lots of talk about my veins being "very deep" and "narrow" like, oh good, not even the expert phlebotomist can find my veins how is the trainee going to. So they found a good vein, on my right arm, and he lets her take it away.

To be fair, I did feel sorry for her because she was visibly nervous. But she could have made an effort to look less visibly nervous! She was literally shaking and then she lost the vein and was about to stab me in an area with no visible veins and the other person had to stop her and direct her back to the correct area. At this point I was sweating, quite literally.

Me: "Are you learning?"
Trainee: "Yes, I'm new"

I mean, the signs were all there, she was not going to get any blood out of my arm, even if she tried, which she did. Ouch.

So I braced myself, and she braced herself clearly...and in went the needle. So slow. It was highly uncomfortable and I didn't want to make her feel bad so I just sort of went with it and let her get on with it- she has to learn somehow! But oh my was she slow. She basically pushed the needle in, at a sloth's pace and I could just feel a lot of resistance from my arm and it wasn't cool. The other phlebotomist told her that "should be enough" when the needle had only made it in a quarter of a millimetre. Low and behold, no blood. Zilch.

"Just pull it back slightly" Were the words from her trainer, so she did. She practically pulled the whole thing out of my arm and all I could think was please please don't try and push it back in. So I said it, I just had to say;

"That's hurting me"

I felt bad! I felt bad saying it because I felt sorry for her because she was really trying but my arm just couldn't take the butchering any longer. It even hurt when she pulled it out. All in all it was a bit of a train-wreck, but she tried, and although she failed she'll get blood from someone's arm one day.

All I can say is, I'm glad for her that she got me as her practice patient. She could have got someone like my sister who would probably cry. I'm glad for her that she got me because at least I was nice about it, and I let her have a chance, and to be honest she's lucky that I can handle blood tests in a level-headed manner. Anyway, the trained phlebotomist tried my other arm and luckily got it on the first try. The irony of it is, however, is that the arm that was attempted by the trainee actually hasn't bruised that much, the main predicament on that arm is the mark left from the adhesive...and the arm that bled straight away for the phlebotomist, has a mighty purple bruise on it!

Left arm

Right arm

So I'm not sure what the moral of the story is, I guess just be kind to trainee phlebotomists even if they are slightly butchering your arm, I guess...and diabetics aren't immune to needle fears! I felt fear during a blood test for the first time really, I'm comfortable with needles when I am confident in the person's ability to handle it- I can inject myself because it's under my control, and I can handle a blood test when the person knows what they're doing because that way I know it won't hurt. 

However, the idea that someone who is training is going to be having a go at one of your veins and that it's probably going to hurt, is really quite unnerving and it's hard to be totally brave with needles all the time. 

-Ellie

I have a job

This month I started working in a local supermarket- I'm not going to say which one purely for privacy reasons! My most recent appointment with my consultant, basically went a bit like, him telling me I should probably get a job to get some routine back to my life now that school is finished. Both me and him could see it in my blood sugar that I was getting lazy! However, I was in the process of a job application at that time anyway, because my parents and the rest of my family, and me, have been telling me to get a job- which is fair enough! I needed a job so I went and got one. It's a Christmas temp job with the chance they might extend my contract.

It wasn't handed to me on a plate obviously. I had to fill out an online form, an assessment/quiz and to go for two interviews before I actually got the job. This job application was the first big company that I have applied to and to be honest I didn't even think I would get past the online assessment part of it! So to be called for an interview was surprising, especially since I was actually beginning to forget that I had even applied because it took them over a month to get through all the applications as there were so many.

Of course, diabetes had to be mentioned. I took the opportunity to mention it at the interview stage, I wanted to get it out there and explain it all there and then and give the interviewer the opportunity to ask any questions they might have. In fact, I actually used my Type 1 Diabetes to my advantage...

Interviewer:"Why do you want to work for us?"
Me:"(Spouting random ramblings)...this company has a strong belief in equality in the work place, which is really good for me as I am actually a Type 1 Diabetic"

Nailed it! Got her attention even more, and it actually led to a more casual and open conversation which allowed me to relax slightly! However, I feel like I had to downplay my Type 1 slightly. I didn't want it to seem like I can't do anything. All of the phrases like "It can be physically demanding" "Do you have to eat at certain times?" etc. started flowing and I mostly answered with "No, I'll be fine. As long as I'm looking after it I'll be ok" And we all know diabetes isn't as simple as "looking after it". I did tell them that my blood sugar can go low and I might need to take an extra break if that happens, and that my blood sugar can go high etc. All in all the interviewer understood and made sure that she gave me hours that won't affect my diabetes too much. For example she didn't give me the job role that requires 5am starts because I said that might affect the timings of my insulin rates on my insulin pump.

Overall, I used diabetes to a slight advantage at this job interview, I also used examples from when I went to Parliament with JDRF and Diabetes UK to make me seem more interesting when asked certain questions! Although Type 1 Diabetes can seem like it's something that is hindering, it is also something that you can use to impress people sometimes. My message to the interviewer basically was yes, I have Type 1 Diabetes, is it going to stop me from getting a job? No. Is it going to hold me back in anything that I do? No. Here I am, an 18 year old with a potentially life-threatening disease, but I'm applying for this job and as serious as it is, I'll be alright.

The only issue with me handling a box isn't my diabetes but my lack of upper body strength.

-Ellie

Transitioning

I haven't written a blog post in such a long time, I know these "I haven't written a blog post in such a long time" introductions are starting to become very routine for me! As it's diabetes awareness month in November I figured that I really need to start getting back into the swing of things. I suppose the questions in people's heads at this point may be where I've been...nowhere, actually! I've been being lazy in terms of blogging, and that is naughty of me! But here I am, I'm back and I'm ready to get blogging more routinely. 

I thought I would take this opportunity to have a little bit of a reflection on where I am in terms of my diabetes. My most recent HbA1c was 9.6%...2% up from the clinic appointment before that but it's ok. My consultant and I decided on the fact that I have finished school and don't have that same school routine is perhaps the reason that my control might have slipped a bit, which is a very feasible explanation so I'll go with it. Basal rates were changed and overall it was quite a productive appointment. Ironically, my basal rates were lowered (despite my elevated HbA1c!) but that is because, I am growing up. I am no longer in that stage of adolescence where hormones are raging, things are settling down as I mature into adulthood and so I don't need so much insulin any more. It's bitter-sweet, I'm glad to be having less insulin but also feeling a little bit disgruntled at the fact that I am pretty much an "adult" now and that's scary! 

Also, being an "adult" means moving on in the world of diabetes. 

I'm currently in the stages of "transitioning", this is the process of your current diabetes team handing over your care to the adult diabetes team. I'm moving hospitals next year- my current diabetes team are amazing but unfortunately the brilliance resides only at children and young adults clinic, I haven't heard much good stuff about the adult team at my current hospital so I am moving hospitals where the adult team is known for it's excellence! It's a whole new chapter in my life with diabetes and it's quite daunting...and I find it crazy how fast these past 5 or so years that I've been with my current diabetes team have gone. It's difficult when you build up trust and a relationship with a HCP and then you have to say bye and you no longer have that support from them. I recently said bye to my psychologist, she is going on maternity leave and by the time she goes back to work I will have moved to adult clinic...she has been a huge help and she is a reminder of how unfortunate it is that a lot of people don't get access to psychological services, it has been a great help to me. 

My first appointment at the new hospital is in January and then I go back to see my current diabetes team in March, and then I suppose after that we will be parting ways for good. I'm sad that I have to say goodbye to my current diabetes team and I can only hope that my new team will be brilliant also. 

-Ellie

I would rather see a Spider

There has been much speculation in the media recently about the warm weather bringing more spider sightings. Most people are afraid of spiders, spiders are weird and their eight legs are spindly and ugly and they're all round not nice. I've held a tarantula before, it wasn't a pleasant experience but it wasn't a bad one either, it was actually a little bit cute in all it's fur. A little bit. I'm not going to say I'm not afraid of spiders, because I am, but I would rather see a Spider than a Wasp.

I'm tempted to compare low blood sugar to how I feel towards Spiders,in fact, I'm not even tempted I'm just going to do it...they scare me, but thankfully are relatively easy to get rid of...and the majority of them are pretty harmless, unless it's potentially poisonous. Much like hypoglycemia...it is fairly simple to treat and to bring your blood sugars up for the majority of the time, but sometimes it can be scary and not so simple and it can be dangerous. And much like the warm weather brings Spiders, it can also bring hypos.

And now I will compare high blood sugar to how I feel about wasps. I hate wasps, and I am convinced they're going to sting me at every opportunity...they make me want to run away and they're notoriously difficult to get away from you once they arrive. A bit like high blood sugar actually, I strongly dislike high blood sugar (who doesn't?!) and it's far more difficult to get rid of than a Spider a.k.a a low blood sugar, and much like a wasp once it's arrived once, it's hard to make it go away and it's threatening to do you some damage every second that it's around...and if you want to keep a wasp away it often involves lighting various candles etc. like a diabetic needs insulin to keep high blood sugars away. It's all quite complicated really. And much like food and drink attracts a wasp, it also attracts high blood sugar.

Both high and low blood sugar are not nice at all and both scare me, but in my eyes both have varying degrees of difficulty. A low blood sugar is easy to get rid of most times, is relatively harmless and although it makes you feel rubbish while it's there it's not as hard to keep away- like spiders, unless you get a poisonous spider, in which case would be a really bad hypo. A high blood sugar is not so easy to get rid of, and once it's arrived it's hard to keep at bay and carries the threat of complications every second that it's around- like a wasp, it threatens to sting you while it's buzzing around in your face and it's hard to get away once it senses your food or drink. But there are times when a high blood sugar goes away relatively easily too.

All in all, I think I would rather see a Spider. (A non-poisonous one)

I thought it would be interesting to do this little comparison because I have been seeing so much about spiders and encountered many wasps this summer that I delved a little deeper into my feelings towards these creatures...and came up with this blog post! I hope you found it interesting too.

My Hummingbird tattoo

Yesterday I got a tattoo. It's a hummingbird. I love it! I got a few questions as to whether or not there is a link to diabetes in my tattoo and the answer is yes. It's not a coincidence that I got tattooed on my arm the very animal that used to be the Diabetes UK logo, but I've also generally just always wanted a Hummingbird tattoo.

I'm happy that I chose a Hummingbird and I'm even happier that it has so much meaning. I really enjoy the fact that it's not meaningless, I don't think I would want to put myself through having a tattoo if I didn't feel like it was worth it. It's beautiful and the artist did a wonderful job designing it and it came out far better than I expected!

Why a Hummingbird in relation to diabetes?

I took this paragraph from a website that I read whilst searching about the Hummingbird and it's relationship with diabetes.

"What we can admire about the hummingbird is it's incredible ability to efficiently manage all the crucial aspects of it's life. Individuals with chronic diseases understand better than most people as to how essential it is not be in control with certain aspects of their lives. For hose with diabetes, their diet is simply one factor they must take into consideration on a daily basis."

In a nutshell, the Hummingbird is a busy bird! It has lots going on at once yet retains it's beauty and composure and it has the remarkable ability to adapt to everything around it. I know the other link to diabetes through the Hummingbird is the way it's body processes sugar, however, that bit is a little bit boring so I didn't put that in the blog!

Pump upgrade: Medtronic 640G

Since I last posted on my blog, a few things have happened...I turned 18, booked my first driving lesson, and yesterday I got my new insulin pump!

June 14th marked exactly four years with my purple Medtronic Veo, or as I liked to call it, Maurice. Maurice and I had a good four years together, there was a slight love-hate relationship going on but on the whole I loved my Veo. It had been through a lot...I dropped it in the bath accidentally a couple of times, dropped it on the floor countless times, let it swing from my body many times, accidentally bashed it on cabinets and door frames and experienced the dreaded 'Button Error' which thankfully did not amount to anything more. Through all the rough and tumble, it survived all four years with no replacement pumps! I did return a very scratched up pump to the hospital, but it was my original pump and it proved to be a very robust pump indeed.

I've moved on from my purple Veo, Maurice, and have a new insulin pump- the Medtronic 640G! I went to the hospital yesterday to get the pump along with a couple of other people who were also upgrading their pumps and we spent from 2-4pm learning all about the 640G and it's different features. In general, I love the look and feel of this insulin pump, it's sleek and it looks modern and the buttons have a nice 'click' to them, if that even makes sense! The colour screen is a huge improvement from the older Medtronic pumps, it no longer looks like an old Nokia phone with the game 'Snake' installed. The fact that it is waterproof really excites me, I mean, my old pump did come into contact with water more times than it should have done...but it was ok, and so I like to think that the old pumps are water resistant to some extent. I'm looking forward to plunging my 640G into the sink one day to really test out it's "waterproof-ness" (That's not a real word I'm sure), but I won't be doing that any time soon, it's too new!

In terms of the actual functions of the pump, they're also pretty cool. I love that you can stop a bolus. If you change your mind about how much you're going to eat or if you want to eat more then you can stop the bolus, the pump will tell you how many units it had already given you, and then you can go ahead and set up a new bolus. On the old pumps if you wanted to cancel a bolus you had to suspend it which in turn suspended everything, including your basal rates, whereas with the 'Stop bolus' feature, it just stops the bolus, nothing else...your basal will continue and won't stop either. Whatever it has just given you, will go straight into your 'Active insulin' which now shows up on the home screen, unlike on the old pumps were you had to press 'ESC' to bring up the screen and then scroll down to see your active insulin. You can also change the volume of the alarms, and set it to vibrate or sound...it's a bit like a mobile phone in the fact that you can see what sound setting you have on in the status bar. To save battery you can make it "sleep", so you can make the screen go off and it won't suspend insulin delivery or anything. If you're wearing a sensor then the home screen will display the sensor graph, if you're not wearing a sensor then it will show your most recent BG for 12 minutes, the Medtronic rep told us that they chose 12 minutes as the time frame to display your BG because after 12 minutes you might have checked again if you were low and after 12 minutes your BG will have most likely changed.

The buttons light up which makes it so much easier to use in the dark, the carbohydrate and bg screens are all on one screen now, whereas with the older pumps you had to enter your BG, then press ACT and then move onto the carbohydrate screen and if you wanted to go back a step it would make you re-enter the carbs. If you're on the menu you can just hold down the back button and it will take you all the way back to the home screen, but if you don't want to go back to the home screen then just press back and it will take you back a step...but if you're changing insulin settings or anything like that you just have to make sure that you press 'Save' before going back to the home screen! I also enjoy the fact that it has little icons up in the status bar such as an insulin vial icon that is green and turns red when you're low on insulin, it also has a green battery icon that will turn red when you're low on battery.

Last but not least, this insulin pump has 'Smart Guard' on it. This feature is activated when you're wearing a sensor with the pump, it will suspend insulin delivery when the sensor detects a downward trend in your blood sugar. You set a 'Low limit' on the pump, which is something like 3.4mmol, and the insulin delivery will be suspended when your blood sugar is 3.9mmol above your low limit and it detects that your blood sugar is falling...it will then resume insulin delivery once your blood sugar is back to normal, or your can resume it manually once you know your blood sugar is back to a safe range. What I learnt yesterday during the upgrade that this is a very sensitive sensor and it can fail or end early. For example, the Medtronic rep at the pump upgrade told us yesterday that if your blood sugar is not stable at the time of calibration it can reject a calibration and will tell you to do it again, two rejected calibrations in a row will make the sensor end because it will suspect that something is wrong with it and tell you to put in a new sensor. Another tip the Medtronic rep told us yesterday was not to calibrate it too much or it will get confused, the best times for calibration are before meals or at a time when you know your blood sugar is stable. My sensor ended yesterday after two failed calibrations and so I am yet to experience the Smart Guard feature as that was my last sensor until I order more, but I will be sure to blog once I have a sensor on and once I experience the Smart Guard.

That is all I have to say about the pump and it's features so far, but overall I really like the pump and I think the fact that it still has tubing is made up for with it's really cool features.

-Ellie

Low blood sugar

Since getting my blood sugars back under control I've noticed that I tend to experience low blood sugar more often than not, it's not a major issue but I would preferably not have to worry about low blood sugar more than I do under normal circumstances. My consultant reduced all my basal rates by 10% when I last had clinic and that is a really positive step for me because it shows that my body is using insulin as it should be and isn't putting up any resistance anymore.

In light of the subject of low blood sugar I'm going to talk about what I now know to be my first ever low blood sugar experience. This particular experience took place before I was diagnosed, I can't remember exactly how long before my diagnosis it was but I don't think it was long before. I know you're probably wondering how it was possible to experience a low blood sugar if my beta-cells were being killed off by my immune system at that very moment...and I wonder that too, but it happened and I am certain that what I experienced was low blood sugar- although I actually really had no idea what was happening to me at the time.

We had just arrived at my auntie and uncle's house in Clacton after a drive that was about an hour and a bit. I felt funny but ignored it. As soon as I got out of the car I immediately felt weak and my legs were shaky- I had never ever felt like that before this moment so I was a little bit disturbed but to be honest I didn't think anything of it...I put it down to sitting in the car for a long time. I had the sense that I needed to eat and thank goodness it was lunchtime! I couldn't make any sense of the situation, all I knew was that I felt terrible and I needed food- and so I ate (loads!) and I felt better right after lunch. That confirms it even more that I experienced low blood sugar at that moment, but I didn't know.

What I didn't know was that this feeling would soon become something that I know and can make sense of, what I didn't know was that the horrible weakness and jelly legs would be a sensation that I would and will experience many more times in my life. I still remember being quizzed by the nurse at the hospital after I was diagnosed, I was going home that day and she asked me questions about the symptoms of low and high blood sugar...I found this so daunting because I wasn't exactly sure and couldn't really differentiate between the two just yet as I was still taking in my diagnosis of T1! Needless to say I didn't quite manage to answer the questions perfectly, but I soon became to know the signs and symptoms that my body gives me if my blood sugar is high or low.

I feel like I might aswell tell you about my lowest ever blood sugar- my lowest ever blood sugar was 1.9mmol, I know there are people who have had blood sugars lower than this but this was a particularly unsettling experience that I wish not to repeat. I didn't feel too horrible at first, I felt shaky and knew I had to check my blood sugar but I didn't think I was as low as I was. So I picked up my testing kit and went to sit on the sofa and I opened my testing kit and set up my finger pricker and put the test strip in my meter but I couldn't get any further than that...I tried to align the blood on my finger up with the test strip but I was shaking so much that this was an impossible task and I was beginning to experience tunnel vision and getting dots in my vision so I gave up and I called my parents in to test my blood sugar for me and I just laid on the sofa waiting for the reading to flash up on the screen. It was not a nice experience at all, and I remember literally eating so much for dinner in order to bring my levels up and make sure they stayed up.

Recently my body has been exhibiting a couple of new symptoms of low blood sugar such as experiencing a wave of nausea (really annoying symptom because I don't immediately realise that I'm low when a low presents itself in this way!) or it just doesn't give me a sign at all until they reach the 2's and then I start to feel light headed- also very annoying. I also tend to get a numb/tingly mouth, it's hard to describe it and it's very strange.

The experience of low blood sugar seems to be ever changing. New symptoms, new hypo treatment ideas...It's the blood sugar extreme that scares me the most, it makes me anxious and it's the most irritating because it always makes you stop whatever you're doing. But it comes along with the insulin that keeps me alive, and it's paired with the high blood sugar that tries to damage my organs, and it is all in all part of the "gift" that no beta-cells a.k.a T1 diabetes provided me with the day I was diagnosed.

I deal with it...and it introduced me to the "original" version of Lucozade...which by the way is not my cup of tea.

-Ellie

7.4%

I am probably the worst blogger ever. I've neglected my blog for over a month and a new blog post is well overdue. The past few weeks have been difficult, busy and for the most part, stressful; but I won't go into too much detail about that. In all honesty, diabetes hasn't been at the forefont of my mind lately, I've just been plodding along with it- I guess you could say I've been surviving- not thriving. I didn't even blog or tweet for Diabetes Week- and that's saying something! Just know that I've been trying to blog and been trying to find the right time to blog and nothing has ever felt right, I have a tendency to write drafts up and never post them...I get distracted easily.

Side note: It was my 6 year diaversary on the 21st of June!

What I'm about to say now is something that fills me with an immense amount of pride and it's taken me five and a half years to get to this point, and despite everything that's happened these past few weeks- I've managed to get my HbA1c to 7.4%! If you read my blog regularly, or if you've been reading it for a long time then you'll know that my diabetes has never really been well controlled- for as long as I can remember my HbA1c's have been over 10% and I say it took me five and a half years to get to a HbA1c of 7 because the last time I saw a HbA1c like that was literally a few months after diagnosis. I've been asked by people "How did you do it?" and the truth is, I don't know! Something clicked earlier this year and I've been on the ball with my diabetes ever since- I really can't even pinpoint what it is that I did to get back on track, it just sort of happened.

I have had the motivation for a long time, I always had bouts of it but never managed to keep up a routine for more than about a week. It's always been the way with me and for a long time I thought that was how it was always going to be. But I proved myself wrong, and I love the fact that I didn't prove anyone else wrong- because the people around me never lost faith in me- my mum and dad always reminded me that I can do this, and my consultant would always say "we'll get there..." after yet another disappointing HbA1c. And I have done it, and I've got there and I got a high 5 from my consultant and I'm proud of myself! I'm so so proud and I didn't imagine that I would have a HbA1c that is this good for a long time.

I feel as though I've abandoned my blog lately but I'm ready to get back on track. I'm glad that my first post after not blogging for a month is something positive, I'm glad that I've been able to share my awesome HbA1c as my first post back.

-Ellie

Joe's blog

I was messaged by Joe a couple of days ago and he let me know about his blog that he recently set up about his Type 1 Diabetes and he asked me if I would be able to share it for him, so of course I said yes. So, here is Joe's blog: http://www.vouchercodespro.co.uk/diabetes

Joe is 26 and was diagnosed with Type 1 Diabetes when he was 18. He says that starting a blog has been "really eye opening how big and brilliant the DOC is" and he wishes that he'd "known about it a lot sooner" and wants to show everyone with diabetes that we aren't alone and wants "everyone to know how much support is out there" and that's basically the intention I have for my blog, and I definitely agree with the DOC being brilliant! I think Joe's blog is really good, and I enjoyed reading it, so I would definitely recommend it and I'm sure it will go far and be a hit with the Diabetes Online Community. It's one to add to the list of fab diabetes blogs. To be honest, any blog about life with diabetes is fab because it's tough to live with diabetes and it takes dedication keep up a blog!

I would be able to write more about Joe's blog, however, my blood sugar is 3.1 as of about a second ago and unfortunately the need for treating my low blood sugar has taken over!

Anyway, I think Joe's blog is really good because it's funny and witty and captures really well just what it's like to live with Type 1.Thanks to Joe for contributing to all of the wonderful diabetes blogs that exist within the Diabetes Online Community, every diabetes blog out there is so helpful, and interesting and informative and everything that's good! (Apart from the ones that try and advertise cinnamon cures, those ones aren't so good...) And they're all a way of raising awareness and they are a lovely reminder that those of us with diabetes aren't alone in any aspect of it.

-Ellie

Keep It To Yourself #DBlogWeek

The topic for today's post of Diabetes Blog Week 2015 is #KeepItToYourself.

"Many of us share aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won't tell them.)" 

I have a lot of posts on this blog that I've drafted up, but never posted. They stay on my list of posts as a draft, and I've never posted them, and I'm never going to! They're my thoughts, some of my deepest darkest thoughts that I've typed up when I was having a bad day with diabetes. I really think that there are certain things that just don't need to be said, or shared, with the internet! I like to keep them to myself, and I don't think I would like people to know; not because these drafted posts are anything sinister or disturbing or whatever, but just that they're my feelings- I've poured my heart out in a lot of them! I don't like the idea of someone reading them because I don't like the way that I might "look"...I do my best to keep my blog as positive as possible and yes, I do share the negatives because I feel like they have to be said but some things might make me look a little "too negative"! I also sometimes feel like maybe I'll look "weak" if I share my most vulnerable moments...the aim of my blog isn't to make people feel sorry for me, it's to show that diabetes isn't easy but I'm okay! And some of my drafted posts really don't reflect that message when I'm feeling down about it.

I also know that within the Online Diabetes Community that, like any group of people, there are a lot of different opinions and sometimes I feel like some things are better left unsaid. Basically there are certain topics that people would prefer not to talk about, and there are certain feelings towards diabetes that perhaps some people who also have diabetes don't feel and sometimes it can cause a little bit of controversy when people try to justify the way they're feeling. Sometimes I feel like diabetes is terrible, but there's always someone who will tell you it isn't, but when you're having a bad day with it you are so convinced that it is. But of course, not everyone responds with a backlash, in fact almost everyone on the #DOC is fabulous, it's just some people that I've seen on Facebook posts just make people irritated...

So yeah, I don't want to make people depressed with my posts! But I always say that I'm never going to sugar coat any aspect of diabetes that I choose to talk about.

One more thing!

Not everyone keeps certain things to themselves...and I feel like maybe they should, because their opinion is not quite what everyone wants to hear. The biggest example being people who have these mad ideas for a cure that do not exist. Maybe they should learn to keep more to themselves.

-Ellie

I can #DBlogWeek

This year I have decided that I will attempt to blog every day this week for DBlog Week. Diabetes Blog Week is kicking off with positivity and the topic for the first blog post of Diabetes Blog Week 2015 is #ICan.

"In the UK, there was a diabetes blog theme of "I can..." that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could? Or what have you done that you've been particularly proud of? Or what good thing has diabetes brought into your life?" 

I can do anything despite having Type 1 Diabetes, it just takes a little extra planning.

I can live my life just as my twin sister and my friends and other people my age do and Type 1 Diabetes can't take that from me.

I can overcome the challenges Type 1 Diabetes presents me with.

I can and have achieved a HbA1c of under 10% in just 3 months, even if I told my psychologist I aimed to achieve this in a year.

I can get up for school in the morning (Sometimes!) even after a tough night with my blood sugars.

I can prove to my consultant that one of these days I really will "get there", for a long time I didn't even know where that was, let alone when I would get there.

I can and have sat my GCSE exams and passed with an abundance of A's and B's.

I can complete a 5k race without Type 1 Diabetes getting in the way...the only thing getting in my way is my lack of stamina!

I can ride rollercoasters over and over again without being bothered by my blood sugar.

I can and have mastered the art of devouring a slice of bread in a few seconds- low blood sugar teaches you all about being speedy...

I can drink a bottle of water in record speed!

I can tell you about some of the positive things that having Type 1 Diabetes has brought into my life.

I can tell you about the time that I went to Parliament with Diabetes UK and spoke in the House of Commons to support their campaign for better healthcare for Children and Teenagers with Type 1 Diabetes.

I can tell you about the time that I went to Parliament with JDRF, was Co-Chair and did a speech for the event- Type 1 Parliament.

I can tell you about the time that I completed my Bronze Duke of Edinburgh award and made it out alive! Despite Type 1 Diabetes making attempts to ruin my fun.

I can tell you about when I first started this blog, and I can also tell you that I never thought it would have nearly 50,000 views two years later.

I can eat whatever I want and be totally fine afterwards with no major blood sugar mishaps.

I can be thankful for some of what Type 1 Diabetes has done for me.

I can be thankful for the wonderful friends that I have met through having Type 1 Diabetes, such as Holly, Paris, Chloe, Lydia and Ellyse to name a few.

I can be thankful for the #DOC, for the brilliant people that I talk to on Twitter and on Instagram who give me lots of support and advice.

I can still see the beauty in life and in this world despite having Type 1 Diabetes.

I can still smile and laugh even after a rough day/week/month (however long a rough patch with Type 1 could possibly last!) with Type 1 Diabetes.

I can use my experiences with Type 1 Diabetes to help others that are going through it too.

I can understand what it is like to feel like the moment you're diagnosed your world turns upside down, but be here six years later with my feet still planted firmly on the ground!

I can tell you that I may only be 17 years old but Type 1 Diabetes has made me mature faster than any of my friends and even my twin sister; and that's not exactly a bad thing.

I can say that although Type 1 Diabetes is hard and it has it's ups and downs and I would much rather not have it; it has given my life even more value.

I can appreciate and be even more grateful for life and live it to the full.

I can be healthy and happy and do everything that other people can do despite living with Type 1 Diabetes!
(...apart from things like scaling buildings and other scary things...I'm a bit of a wimp)

And I can still aspire to do great things in life and I can and will always have hope for a cure.

...I can do a lot of other things that I forgot to mention in this blog post, or just didn't mention for the purpose of not making this blog post too long!

-Ellie

Back on the pump

Tonight I was reunited with my insulin pump. A couple of months ago I made the decision to take it off, I decided that I wanted a break from it but also I felt like I needed to be back on injections to allow myself to find 'routine' again. I feel like I will always have to be the kind of person who has to consciously tell myself to test and give insulin, I often lose the routine of caring for my diabetes and when that happens wearing my pump isn't the best idea.

The pump has two main functions, one is to deliver insulin as a 'basal', the basal rates on a pump have the same effect that your background insulin injection (e.g lantus) would do. The difference is that the basal rate is a fast-acting insulin and so it continuously drips through the cannula all throughout the day and night helping to keep your blood sugars stable just as an injection of lantus or levemir does. 

The other main function on the insulin pump is the 'bolus', a bolus is an extra push of insulin through the tubing when you eat or need to correct, it's the equivalent of an injection of fast acting insulin. 

And the joy of the insulin pump is that all of this can be done with the push of a few buttons. 

However for me, the functions of an insulin pump that are so brilliant are both a blessing and a curse. 

What I'm saying is that a lot of the time that I've been on my insulin pump (more so in the past year or two) there have been times where I have become 'lazy' with it, so to speak. I relied on the basal rate to keep my blood sugars from going super high and I hardly ever bolused because I thought it wouldn't be a huge issue, I knew I would run high but I also knew the basal rate would cover me in terms of having insulin in my body to avoid ketones. So all in all I let my basal rates deal with the blood sugar and I fell out of routine over and over again. It's bad, I know! But it's the way things often got for me and that's why when I get like that I switch back to injections for a little while. 

Switching back to injections is a bit like a "fresh start". When you're on injections you have no choice but to inject or you'll develop ketones because there is no basal rate to keep you covered. So knowing that I absolutely have to inject or go into DKA is what helps me get into routine again because I bolus like I should and give the background insulin. 

And then come along wonderful blood  sugars and they help with my motivation because I work harder to keep them in range. After spending so long with constantly high blood sugars I found that I developed an "I've got nothing to lose' attitude and so often wouldn't test because I knew I would be high anyway  and/or would test, see that I was high and just not do anything about it because I didn't want to deal with it and/or think "I'm high anyway so I have nothing to lose if I don't give insulin for this". So my point is that seeing good blood sugars is a real motivation for me in itself because I try harder to keep them that way once I achieve them. 

And with better blood sugars and having to inject or risk DKA comes the routine. I manage to find it again and I find myself again and I remember that being high all the time is not okay. 

So after having a two month break from my insulin pump I feel ready to put it back on again. However I'm taking it slow and will only be using it for boluses and corrections, my background insulin will still be done as an injection of lantus to help me avoid becoming reliant on it and not bolusing as I should. 

I hope this is the last time that I've had to switch back to injections from my pump. I don't want to spend the rest of my life not being able to keep up the routine, I don't want to continue having these spells of laziness and complacency with my insulin pump. I want to be able to stay on the ball properly and be able to do this properly. I don't want to be the kind of person who will never quite fully grasp the act of controlling diabetes, I want testing and giving insulin to come easy to me, I want it to be permanently etched into my mind because that way I can be me. 

And me is someone who wants to be healthy and happy and live life to the full,  I don't want caring for diabetes to always have to be such a challenge for me. 

When I was diagnosed I was told looking after diabetes would become as routine to me as brushing my teeth, six years later I'm not quite at that point but I'm getting there and switching back to injections has helped me reduce my HbA1c from 12.9% in January to 8.9%. 

I still have a way to go, but let's hope I can keep up the good work. Seeing a HbA1c under 8% is a massive goal for me and I'm going to fight damn hard to get there. 

-Ellie 

My blog: Two years on

My blog is officially two years old!
I honestly cannot believe how quickly these past two years have gone and in all honesty I feel like it's been much longer than two years. In the post I wrote last year for my blog's 1 year anniversary I referred back to my early posts, this time I'm going to refer back to last year's post and take the time to say how amazed I am that my blog has gained a further 22,000 views since then.

When I started blogging I didn't expect to get much out of it, I just wanted to write purely because I enjoy writing and I wanted to channel this into something productive, and so I set up this blog to raise awareness for Type One Diabetes, but this blog has become not only a platform for raising awareness, but an outlet for me to express whatever I'm feeling in regards to diabetes, and to talk about diabetes and my thoughts. I blog not only for the benefit of others but for my benefit too, and that's what makes my posts even more worthwhile.

It's also a bit like memory lane looking back through my old posts, I like that I have posts from two years ago that I can go back and read, it's nice to reflect on things. In one of my early posts I mentioned that I couldn't sleep, and I had a practice GCSE maths exam in the morning, two years later and I've passed my GCSE's and my AS levels, and I'm now studying A2 and have applied for University. I was just 15 when I started  blogging and now I'm almost 18, I feel like a lot of maturing took place from the time I started this blog to now.

I feel like a bigger part of the diabetes community with my blog, it's opened me up to the world of blogging and raising awareness and I've spoken to and met a bunch of fabulous people along the way, not just from my blog but from twitter too. I hope my blog will continue to grow as it has done in the past two years because it is absolutely one of the things that I am the most proud of.

Control

Anyone who knows me will know that I've always struggled to stay in control of my diabetes properly for longer than about a week. It's just always been something that hasn't come naturally to me in the five and a half years that I've been diagnosed, it always felt like something else in my mind took priority over diabetes and it would get pushed to the back, I suppose you could say that diabetes took a back seat for the majority of my diagnosis for whatever reason. Until now.

I have to change, things need to be different. I need to be healthy, and everyone who cares about me needs to know that I will be ok. I need to prove to myself that I can control my diabetes and that my dream of seeing a HbA1c below 7% is achievable. Seeing a high HbA1c is not how it should be, I need to face diabetes head on once and for all and stay in control, and for the past few weeks I've found myself doing just that.

I went into Diabetic Ketoacidosis a few weeks ago. I went into hospital on the Thursday and was discharged on the Tuesday, my consultant wanted to give my body a break from all the high blood sugar I had been having, so although I was out of DKA by the Friday the nurses took over my diabetes care from that moment on for a few days and got my body used to normal blood sugar again. On the day I was discharged I realised that I could see without my glasses on, anyone who follows me on Twitter knows that I was extremely confused at this, but I liked it. My eye sight was clear as day, I couldn't stop looking around- my eyes lasted three days before they went back to being blurred again. I was disappointed to say the least when I realised I no longer had 20/20 vision, something which I hadn't had since I was about eight years old. I've come to the conclusion that my eyes got a little excited about my blood sugars being controlled again, although I still find it hard to apply this theory to the situation because I've been wearing glasses since before I was diagnosed with diabetes, so it's not like diabetes was the initial cause for my blurred vision.

Anyway, my point in saying all of this is because I realise just how much diabetes affects my eyes, we all know diabetes can cause all sorts of horrible things and we all know that one of the most commonly affected by diabetes are our eyes, but it doesn't seem as "real" until you see the effects. I've always said that the complication I would be most devastated about if I ever unfortunately got any would be if I developed retinopathy, I would hate that, I don't know how I would handle losing my sight. I am a very visual person, I want to do film studies at Uni and I like seeing the world around me, I hate darkness...and I hate that diabetes threatens my eyes so much. It's clear to me how much fluctuating glucose levels impact my eyes and it's an impact I want to minimise as much as possible. But don't get me wrong, I want to avoid all the complications.

I'm not going to lie, at a time when I was really really bad at controlling my diabetes and I had a HbA1c of 15% I didn't think about complications and to a certain extent they didn't worry me, the threat of them didn't seem enough to make me control my diabetes. Basically, I couldn't be scared into controlling my diabetes and I know I wasn't the only one who felt like that. It sounds weird doesn't it? Because controlling my diabetes centers around three main things, staying safe, preventing complications and having a life: having the energy and good blood sugar to be able to live your life to the full and live it well. All three of those things are something that can't be achieved in a constant state of high blood sugar.

As I said at the beginning of this post controlling my diabetes is something that I have found myself successfully doing for the past few weeks and I am immensely proud of myself. I can't remember the last time that my diabetes was this well controlled apart from the times that my diabetes has been controlled for me in hospital. My blood sugar meter tells me that I have a 7-day average blood sugar of 7.3mmol and a 14-day average blood sugar of 7.9, and to me this is awesome and I don't see why it wouldn't be awesome to anyone else who knows that I've struggled with keeping my blood sugar in range for as long as I can remember.

It's crazy how one minute I was living a totally ordinary life and then I was diagnosed with type 1 diabetes and suddenly everything changed. There isn't an aspect of my life that diabetes doesn't impact and that's something that I find incredibly frustrating but I deal with it. I deal with diabetes because I don't have a choice, and I know it's hard, but however hard it gets I just go with it because I have to. I can't run away from diabetes although I've wished that I could plenty of times.

I think I've noticed that the only way to really feel a little bit ok about having diabetes for me is to be in control of it and I know that's easier said than done, but believe me, if you're struggling with your diabetes there is a light at the end of the tunnel even if you can't quite see it, just keep going. My consultant told me that having control of your blood sugars really improves your mood and the first thing I noticed when I was back in control was that sense of optimism and motivation that I had lost for so long and I intend to keep things that way.

Pens

Over the weekend I decided to switch back to pens, my pump was getting on my nerves. Don't get me wrong I love having my insulin pump but sometimes I just want a break from the tubing and the bulkiness of it, also, the clip is a little bit broken so my pump likes to do a nose-dive every once in a while. I've forgotten how free it feels to not be wearing my pump- it feels nice! Different, but nice. I'm still wary of doorknobs and my rabbits being on my lap in case my tubing gets chewed or pulled out...but then I remember I'm not actually wearing my pump so I can relax a little in that respect.

The thing about insulin pumps is although they're brilliant and totally allow you a lot more freedom in terms of food and insulin doses, they're hard work. You have to be so wary of it all of the time, you need to make sure the tubing is tucked in and make sure that it's filled up with insulin and fully charged before you go anywhere. And in comparison pens are so much simpler! So I made the impromptu decision to switch back to insulin pens and so far so good.

Another thing about insulin pens is I feel like they make you a bit more disciplined, In the sense that, you need to do your injections or it could end up much worse than if you didn't bolus on a pump because a pump has the basal rate...but if you didn't do your levemir or lantus then it might be a whole different story because you would have no insulin at all. I was at clinic the other week and my consultant knows that I'm not the best for bolusing my food so that's something I need to work on...'basal machine' was his choice of words. Thankfully he's totally not mean and doesn't shout!

Sometimes I wonder if maybe I should switch back to pens all together...but then I think I'd probably end up getting really fed up of them. Because even though it's simpler in the concept, it's not that simple when you're out and about because you actually have to stop what you're doing, or find somewhere to sit down while you inject, whereas with an insulin pump you just press a couple of buttons and then you're done.

So, I have mixed ideas about pumps and pens, and I think I like a bit of both every once in a while.

-Ellie

To Jamie Oliver

Yesterday I saw that you had posted a photo of yourself holding packets of sugar in front of a giant can that had "diabetes" written on the front of it, and I shared my angry thoughts on it on Twitter and it got 30 retweets and 24 favourites, evidently the diabetes community shared my views. I know you've received a lot of angry messages and tweets and comments all in response to your photo and I know you've tweeted that you "fully understand" why people are mad about your photo, but you'll never "fully understand" really, if you did then perhaps you would have taken the photo down...but it's still up, and it's still up there with it's 32,320 likes, 1,381 comments and 1,702 shares, it's there contributing to the stigma around diabetes, the stigma that those of us who actually have diabetes, are trying to end.

This isn't just strictly to you, Jamie, but to all of the other people who have done something similar and to raise awareness of type 1 and type 2 diabetes in general.

Here is what I have to say about your photo, the photo that I wish you would have never put up because it's offensive and it makes you almost as bad as the people on Instagram who put up photos of cakes and sweets and hashtag them with #diabetes, #imgoingtogetdiabetes, #thisisdiabetes. I have Type 1 Diabetes, I was diagnosed when I was 11 almost 12 years old on June 21st 2009, I'm now 17 years old and I've had this diabetes blog since March 2013, as you may or may not be able to tell I'm very passionate about raising awareness of this disease.

Let me tell you about type 1, I didn't get it from a can of coke. Type 1 diabetes is an autoimmune disease, my immune system killed off the insulin-producing cells in my pancreas through no fault of my own. I know the can doesn't say type 1 or type 2, but just 'diabetes' and a lot of people have responded to those of us with type 1 diabetes that have taken offence to the photo with "but the can doesn't say type 1 OR 2?" and my response? That's the point. I wish people would stop using the word 'diabetes' as an umbrella term, type 1 diabetes and type 2 diabetes are very different from each other.

Secondly, sugar alone doesn't even cause type two diabetes, there are other factors like genetics that cause it. In fact, fit and healthy people can develop type two, think of Sir Steve Redgrave for example- he is an Olympian, and he lives with type 2 diabetes, he's not a fat, old, sugar-consuming slob who lies on the sofa all day. So in actual fact, the can shouldn't say 'diabetes' at all. I'm all for promoting healthy eating and exercise but why is it so hard for people to do it without mentioning diabetes? I know that diet can be a contributor to type 2 but if you're going to say that then say type 2 diabetes! Don't just refer to it as 'diabetes', because that adds to people being unable to differentiate between the two diseases and thus diabetes becomes a disease for the obese, when those of us with type 1 and even some with type 2 did nothing to cause it.

It's offensive, it is so offensive to see a photo like yours, Jamie. I have to test my blood sugar 4+ times a day, and I wear an insulin pump 24/7 just to stay alive, I am dependent on insulin and I did nothing to bring that upon myself, I have type one DIABETES. I have diabetes, and when I see it sprawled over the front of a can of coke it makes me so mad. Your photo is so incredibly irritating. Also, a lot of people with type 2 didn't do anything to bring it upon themselves so they're probably equally as irritated.

If I could ask you one thing it would be please take the photo down. I am diabetic and I did not get diabetes from a can of coke. I depend on an insulin pump to live and I need to test my blood sugar daily, I have to carry various supplies like spare cannulas, glucose, injection pens, needles, and I live with the risk of getting complications like blindness, nerve damage and kidney failure, and no part of that is my own fault.


And I wish not that just Jamie Oliver understands that, but that the rest of society does too.