New Years Eve...Eve

I started 2013 with the same New Year's resolution that I've always had since I was diagnosed nearly five years ago in 2009- "To do better with my diabetes" and I'll ring in 2014 with the same resolution. The years before diabetes my resolutions were simpler, they didn't have much of a meaning- I said small things like "To not eat a lot of bad food" or something empty, yeah, empty...as a child I suppose I made empty resolutions; they didn't mean much to me and whether I did or didn't eat less bad food wasn't an issue for me, after all it's not like I really needed to. 

And now, I do.

Now, when I say to myself once the clock ticks to 00:01 on January 1st 2014 that I need to do better with my diabetes. It means something; it is a resolution that screams loud and clear in my ears. Sure, diabetes isn't everything but it's big enough to have an impact on my life, after all, if I don't look after my diabetes how can I be me? "Me" isn't a cranky, thirsty, tired girl. That is not me. 

I vow every year that I will do all that I'm supposed to, giving insulin, checking blood sugar, counting carbohydrates, everything. And can I HONESTLY say that I fulfilled my resolution in 2013? No. But I sure as hell tried. I've never stopped trying. All through 2013 my Hba1c hovered around 11-12% from what I can remember. 2013 was the year that my Hba1c climbed right up to 12.3%, the highest it's ever been. But I didn't give up. When my mum asks "Are we going to get it down?" I say "Yes, we can do it" In terms of diabetes, I spent a lot of time not asking for help from my parents, I assumed I could do it all on my own- but if there is anything that 2013 has taught me about a life with type one diabetes, it's that sometimes, it's okay to ask for help, and these last few months of the year I have and I'm forever grateful for all the help I get from my parents and my family. 

Just because my control over diabetes hasn't been great this year, it doesn't mean that 2013 hasn't been great. I've had ups with my diabetes, and ups and downs with every thing else. Lets reflect on my year. 

In February 2013, we welcomed my cousin on my dad's side baby, Charlie into the world. 

In March 2013 I started up this very blog, this blog that eight months later has conjured up over 18,000 views. 

In May/June 2013 I completed my final GCSE exams.

In June 2013 I spoke in the House of Commons as part of a campaign run by Diabetes UK, I passed four years of living with type one diabetes and attended my Year 11 Prom.

In July 2013 I turned sixteen years old and welcomed my other cousin's baby, Ethan into the world. My family and I also got the news that my auntie, uncle and cousins on my mum's side are moving back to England from the USA in Summer 2014.

In early August 2013 me, my parents and the family on my mum's side all went on a holiday to Somerset.

In late August 2013 I received my GCSE results- 1 A*, 3 A's, 3 B's, 1 C and (a D...but we can ignore that) I also did a speech at a local cyber bullying event and was in the local newspaper for the first time ever.

In September 2013 I started sixth form, did the JDRF Walk to Cure Diabetes for the first time and got pet bunny rabbits- Fred and Perry.

In October 2013, I had a bit of a 'down' time when I went into DKA, but I came back bouncing. That month also marked one year since losing one of our pet cats, Smudge.

In November 2013 it was anti-bullying week and I was chosen along with one other girl from Year 12 and other girls from the years below to be anti-bullying ambassadors for the Diana Award. We attended an anti-bullying event with workshops run by various celebrities.

And this month, December 2013 I found out that I got a place for Type 1 Parliament with JDRF in March next year, welcomed my cousin on my dad's side second baby Alyssa, into the world. I finally got my Hba1c down to 11.4% (something I am very proud of because I struggled to control my diabetes for most of this year) and it has given me even more motivation to get it lower, I switched from my insulin pump back from injections, which so far has been a brilliant decision for me, and on the second to last day of 2013 my blog passed 18,000 views. 

All in all, 2013 has been a great year. (I may or may not have missed some things out, but these are the major things which I can remember)...I feel as though I have accomplished a lot and learnt a lot about myself, of course I have had down times within these 12 months but I am thankful they have never been anything too major, it was things like feeling sad about diabetes, or family disputes like arguments with my parents but I love them so much that they are never anything huge. I've fallen out with some friends this year too but sometimes I feel like falling out with these particular people was a blessing in disguise because I have realised who my true friends are. 

I hope that 2014 is a brilliant year and is full of health, happiness and accomplishment for me, my parents, my family, my friends and for everyone. 

I probably won't post tomorrow which is New Year's Eve, or on New Year's Day. So I wan't to take this opportunity to wish everyone a very wonderful New Year and a VERY HAPPY 2014.

What's it like?

What's it like?
What is it like to live with Type one diabetes?

To live with a disease that has no cure, is potentially life-threatening, can cause complications and leaves you dependant on insulin to live? It's tough, to say the least. I have been living with type one for nearly five years now- it will be five years on June 21st 2014. In my four years so far with type one diabetes I have experienced high and low blood sugars more times than I can count, been in hospital three times in diabetic ketoacidosis, had sleepless nights, felt emotions on a massive scale - anger, frustration, fear, but then there is happiness and pride...don't forget that, and more. On top of all of that, I have endured thousands of finger pricks and injections and hundreds of pump site changes.

My very first finger prick and injection on 21st June 2009 would be the first of many. Four and a half years on I look down at my fingers and I can see tiny little scabs covering the tips, when I look down at my stomach and my legs, I see red spots all over, I feel lumps on my thighs, from injecting myself five+ times every single day. They may be small, but they are loud. The marks on my skin from endless needles tell a very big story, they speak the truth of a life with type one diabetes.

I have spent roughly one thousand, six hundred and two days with type one diabetes. Days I should not have spent injecting, testing my blood sugar, being in hospital, going to clinic, feeling high and low blood sugars. These are days I should have been spending as a normal teenager; like everyone else. But I didn't, I have type one diabetes. Am I going to sit and cry about it and feel sorry for myself? No. Do I expect anyone else to feel sorry for me? No. Life could be so much worse,  I accept what I have to live with, I cannot change that. Nothing except a cure can change that.

But just because I'm not willing to moap around about diabetes doesn't mean it isn't tough. Because it is. It is frustrating and painful and exhausting.

I have had over 6,000 finger pricks.
I have had over 4,000 injections.
And over 200 pump site changes.

(I am not very good at maths, these are a rough estimation. Don't judge)

Needles.
Type one diabetes is needles. Finger pricks, injections, I.V's in hospital if in DKA, yearly blood tests...needles.
Luckily, I am not afraid of needles. They do not in still a sense of fear in me, unless very large I suppose. Anyway I do not fear them like some other people do- in fact most diabetics do not fear needles like most other people. For they are what we use to give ourselves insulin, the very thing that keeps us alive. Does that mean the needles don't hurt? No. We are not immune to pain. I feel pain just the same as the person next to me, if I hit a nerve whilst injecting it does hurt and I will wince, after all, I am still stabbing my stomach with a sharp object. But I'm used to it. So I will get on with it, because it won't be long till my next finger prick or injection, it's normally roughly about 2 hours.

It takes a lot of nerve, courage and bravery to live a life with type one diabetes. Sometimes those on the outside acknowledge this, sometimes they will not, and the finger pricking and injecting is a fact for those people. Usually the ones who acknowledge it are the parents, family members and friends who watch what a diabetic goes through every single day, those who do not are probably not educated very well on the emotional side of type one- the finger pricking and injecting is just a statement to them, a fact.

But for the person with type one diabetes, what we go through every day is so much more than just a factual part of our lives.

Like the number on our blood sugar meters.
My little cousin likes to "help" me test my blood sugar. She reads out the number on the screen for me. To her, the numbers mean nothing. She has no idea what it means, while at a restaurant earlier with my mum, auntie and cousins she read out "17.9" then she went and got her crayons and started colouring. Then again, I love that she is innocent to it all.

Injections.
The waitress who saw me inject today saw me inject, but that's it. She saw it. She didn't feel it, and probably didn't understand why I was doing it. But I knew why I was doing it, I was doing it to correct a high blood sugar, a high blood sugar with the potential to irreversibly damage my body, I was doing it so I could eat my food and avoid a blood sugar spike that would make me feel weak and thirsty- then making my day not so enjoyable.

Finger pricking.
When I go to clinic to get my hba1c test done I use my pricker to give them a sample of blood from which they can measure my average blood glucose test. The nurses probably don't know that that finger prick is the 4th one of the day...but what they do know is that it will be the final one that will sum up all my previous finger pricks that I did the months before to check my blood sugar. It will be the one that reflects the last three months of my diabetes management. When they knock on the door and hand it to my consultant, it's still only a number, it's still just a finger prick.

What I am trying to say is that there is so much more to what's on the surface. There is an emotional side to a life with type one diabetes that many people except for parents and family do not see. But just because type one diabetes is tough- it does not mean it is the worst thing in the world. Despite the challenges I face with type one every day I still smile through it.

Type one diabetes is the reason that I have met some wonderful people on Facebook and on Twitter, it is the reason for my blog which is something I am extremely proud of, it is the reason that I got to speak in the House of Commons, it is the reason that I am a better person, stronger, even more grateful and appreciative of all that I have than I was before June 21st 2009.

There is a silver lining in living with type one diabetes. It taught me to be more responsible, it opened up the doors to a life I never thought I would lead, there are days when of course, I feel frustrated, I want there to be a cure and the doors to a life with type one to be closed- I mean, blood sugar fluctuations make me feel sick, shaky, moody, weak, sometimes the finger pricking and injections sting...it's okay to not be okay sometimes. Hiding behind a smile is never easy so some days I just need to release my emotions. My life is in my hands every day, that's a heavy weight to carry.

Diabetes changed my life in 2009, but it could have been worse.
I am proud to be type one diabetic despite the challenges it presents me with each and every day.

So, what's it like?
It's tough but there is a silver lining.
I have learnt to embrace this relentless disease and I will continue to do so. I want it to be cured, but right now there is no cure so I just need to deal with the cards I have been dealt in terms of type one diabetes and know that there will be a day when I can say I used to be a type one diabetic. Just hold on. I know I'm strong enough to be a type one diabetic, I may not believe it some days but I know I am. With the support of my parents, family and friends, I am strong.

And so is every other type one diabetic in this world- never give up the fight.

-Ellie
[Peace&Insulin]

Annoying things people say to diabetics

As a type one diabetic, you will probably find yourself dealing with not just the diabetes, but also those who feel they have all the knowledge and expertise in the world about a disease they probably learnt about from a Wilford Brimley advert on TV where he talks about his "Diabeetus".

I've been asked a few silly questions, but beware; if you ask me a stupid question about diabetes you will probably get a science lesson on what it actually is. Here are some of the most annoying things you can say to a diabetic. 

"My Grandma had diabetes. She lost her leg and she died" 

Listen, I have no connection with your grandma. So it would probably be helpful if you left out the gory details. Telling a diabetic person, that your grandma who was also a diabetic lost her leg and died, is really comforting thank you, thank you very much. I appreciate it. Secondly, chances are your grandma was type two diabetic and not type one. 

"Oh Lord! You just ate some sugar. Are you ok? Don't die on me!" 
First things first, I am not allergic to sugar. I will not develop hives and my body will not spontaneously combust if I eat sweets, I just have to inject insulin (otherwise I may get very moody with high blood sugar and there may be a chance of combustion...) Besides, it's not just sugar I have to give insulin for, it's carbohydrates too, things like bread, pasta, potatoes etc.

"Can't you just control it with diet?" 
No. This one is more so when people confuse type one diabetes, with type two diabetes. Both are different. Type one diabetics need to inject insulin to live or we will die as our pancreases do not produce any insulin whatsoever. Type two diabetics just have insulin resistance, and take tablets- hence why most do not take insulin and their blood sugar can be helped by altering their diet.

"I couldn't inject myself" 
When it literally means life or death, I think you would be able to inject yourself just fine.

"Does that hurt?" 
Yes. It does hurt sometimes. Diabetics are not immune to pain, the only reason we don't make a fuss it because it's something we do every single day- I'm not saying I'm used to all of the needles, but I am to some extent...it becomes a routine and we do it because we have to.

"Did you eat too much sugar?" 
Type one diabetes is not caused by eating too much sugar! I can't stress that enough. It's an auto-immune disease- my immune system attacked my pancreas and now it no longer makes insulin. (Shout out to my immune system for being such a moody cow and shutting down my VITAL insulin-producing beta cells, really appreciate it) Type two diabetics, have insulin resistance and this is not always necessarily caused by a bad diet. Other factors for type two include old age and genetic predisposition.

"Eat cinnamon. I heard it cures diabetes!" 
You know what I heard? That it doesn't so stop.

"You can't eat that?"
UM. Yes I can. As a type one diabetic it does not mean that I have to restrict my diet. I can eat whatever I want as long as I give insulin for it. Maybe not something like a sugar coated ice-lolly drizzled with chocolate sauce and sprinkled with marshmallows- that may be an issue...even for a non-diabetic.

"I literally ate so much bad food today- I'm seriously going to give myself diabetes"
This is actually really offensive. A diabetic would look at you and think "What are you insinuating?!" It's just a really ignorant thing to say if I'm honest. And even if it is a "joke" it's not funny. We will never laugh at people who say things like that.

"Well at least it's not cancer!" 
Yes, at least it isn't cancer thank you for pointing that out to me- as if I didn't already know. But I wish people would STOP comparing diabetes to cancer. They do not compare. Both are serious given the circumstances but they are two completely different things. Both are hard in their own way. Obviously, we are all extremely grateful to have diabetes and not something like cancer. However, I still have diabetes and it is still serious and it is still potentially life-threatening no matter what you compare it to.

"Do you have the bad kind of diabetes?"
There is no bad kind. Just because type one diabetics take insulin and type two diabetics don't sometimes, does not mean that type one is "the bad kind". Type one and type two both have the same effect on the person and ok maybe type one diabetes requires more attention but diabetes is diabetes.

"You're diabetic? But you look fine?"
Darn. You mean my extra eye hasn't grown in along with my extra nostril? I'm probably not diabetic then...
Diabetes is also known as an invisible illness, just because you can't see it does not mean that it's not there.

Those are a few of the annoying things that people say to type one diabetics.
In the #DOC at times, we like to refer to some of these people as "Type Zero". I'll leave the definition below.

-Ellie
[Peace&Insulin]

*Type zero: 
A person that does not have diabetes. Symptoms of Type Zero include vastly stupid questioning of people with Diabetes, inability to distinguish between Type 1 and  Type 2 Diabetes and making wild assumptions on what people with Diabetes can and can't do, or eat. Severe Type Zeros will often encounter sudden pain in the jaw area. This is caused by getting punched in the mouth by an offended person with Diabetes.

Typical Type Zero comment: "Oh, I know a diabetic. They have the bad kind." 

-Thanks Urban Dictionary!

It's not a joke

This evening, as I was scrolling through my Facebook feed I saw the blue candle.
For those who do not know, within the diabetes community, when someone changes their profile picture to a blue candle; most of the time it means that someone else within the diabetes community has died. Depressing, right? I clicked on the comments and they were all talking of a young Scottish man who died from complications due to diabetes.

I don't know what they were exactly, or even how old he was. But what I do know, is what stood out. All I know is he was young and he had complications and now he isn't on this earth any more. And why is that? Oh right, yeah, because he had type one diabetes.

This is the same disease that people make a joke out of. The same disease that when you search it on instagram, countless pictures of cakes and sweets appear, and when you tell people you have it they ask "Did you eat too much sugar?" The same disease that people make stupid facebook memes out of, or the one where people joke about getting diabetes from eating a bit of ice cream- "No don't give me that you're going to make me get diabetes!" Well guess what? This pre-conceived, ignorant idea that people have in their heads about diabetes is number one, extremely offensive, not to mention ridiculous and number two, aggravating.

Thanks to the media diabetes looks like a joke.
Whenever people hear the word diabetes they think about the overweight American man on those TV adverts, or sugar. That's all there is to them. That's what diabetes is to the un-educated. None of them REALLY know. They have no idea what it's like to live with diabetes, the countless needles, sleepless nights, hospital visits, blood sugar fluctuations, and more are unbeknown to them and it's not fair on us because as well as living with the disease (which, no we did not get from eating too much sugar) we also spend time on social media and find ourselves feeling aggravated at the silly "jokes".

Then if you were to confront the offendor, all you will hear back is "Can't you take a joke" or "I was just kidding!" Yeah, you were "just kidding" because you can afford to. Of course, I find the humor in my diabetes, for example I find the Type One Diabetes Memes facebook page really funny...but that's only because they are relatable jokes. Jokes that we can all read and think "That is so me!" and we're allowed to do it because we all live with diabetes and understand one another, plus there are no "jokes" about eating too much sugar or being overweight. It's sort of like, siblings when they're mean to one another. They are "allowed" to do it to some extent because they are siblings but if anyone else does it to them that's where they draw the line.

I bet all of the people who make fun of diabetes on the internet won't know about the young man who died from diabetes today, nor will they know about the little child who will be crying in hospital having just been diagnosed, preparing for a life of needles, they won't know of the person sitting up in bed at 1am- feeling so grateful that they woke up during the night for that low blood sugar because what could have happened if they didn't doesn't bear thinking about, what about the person going blind because they struggled for years with diabetes? Or the parents feeling frazzled having chased their toddler around the house with a needle; the needle that will inject insulin to keep them alive.

They won't know.
So when we as diabetics, see these posts we feel as if it is our duty to tell them what diabetes really is.

Not a joke. That's what it is.

It's serious and sure, it may not be cancer and there are worse things in this world but never have I seen a joke made online about cancer, and I hope I never do. It's bad enough seeing them about diabetes.

If you do make jokes about diabetes, and you're reading this...take into consideration what it really is to be a diabetic and what diabetes really means. Because you have no idea.

It's not a joke.

-Ellie
[Peace&Insulin]

Rant

On average, Type one diabetes costs the NHS £1 billion annually.
Type two is £8.8 billion.
Making the overall cost of diabetes on the NHS £9.8 billion.
80% of this money goes to treating complications.

So my question is, if the NHS are "so concerned" about the cost of diabetes, and if it's threat to make the NHS "bankrupt within a generation" is so overwhelming; then why isn't more being done to prevent Type two, to cure Type one and to provide better health care and education surrounding both types?
An article from 2012 states that "Experts say much of this is preventable with health checks and better education" and so I say, yes, that's one way of preventing type two- but how about those who already have type two and for those who are like me, who have type one diabetes? Why isn't there consistent high quality health care for us all? That's one of the reasons that 80% of the cost goes to treating complications...because too many diabetics all over the country are being left with out proper health care but the Government won't admit that and it's blamed purely on the supposed "poor efforts" of those who live with the disease that magically apply to every diabetic in the country somehow- when they know full well it is not the majority. I'm lucky enough to have an amazing diabetes team, but others aren't so lucky. So it's up to the diabetics and charities like Diabetes UK and JDRF to stand up and give each other a voice, with the help of the MP's who actually want to help- but then ultimately it's down to the higher individuals, who don't seem to be all that concerned.

And, when the articles come out with headlines plastered all over them about the rising numbers of type one and two diabetes...who is listening? The government will read it and the NHS will criticize and moan about it, then sit back and do nothing. While there are diabetics, type one and type two doing all that they can to make a change but sometimes to no avail.

Every week, billions of pounds are given away in the national lottery. And yet, the government and the NHS claim that they can't afford the cost that diabetes has and that it is putting a strain on the NHS. So, why is there not more money going towards the things that really matter such as the National Health Service rather than the national lottery? Then, this is the best bit...GP's think that they can cut down the number of test strips given to diabetics...TEST STRIPS...the very things that we rely on to know how our blood sugars are doing through out the day. Then wonder why diabetics have so many complications, or high hba1c's. Some hospitals, they give out absolutely horrendous care for their diabetic patients, another thing! Not even the health care "professionals" know the seriousness of type one and type two diabetes! The people whose hands we're supposed to put our health into...just about know the basics of the diseases they're dealing with.

So, maybe the government and the NHS and all of the people who are supposed to make a difference in this country should review the state the health service is in before criticising a certain aspect. And I certainly believe that it isn't fair that the diabetic be blamed entirely for their situation- ok of course there are those who really don't control their blood sugars but there should be more focus on trying to help them. It really annoys me.

And as for type one diabetes; it alone costs £1 billion so why isn't there more funding and more research into finding a cure? Sometimes type two diabetes does get all the attention in terms of the NHS and type one is pushed aside, probably because 95% of all diabetics are type two but that's no excuse. Both types need equal research and campaigns and funding and everything that there is to try and stop diabetes.

The NHS are complaining about the cost of diabetes so why not get up and do something about it. Things can't change from just the diabetics alone.
There are over 3 million diabetics living in the UK both type one and type two- but even in our large number we're still not heard as much as we should be.

Now I'm not a politician, and I don't know much about politics or the government or even the way the NHS works entirely- and I may or may not be the most knowledgeable on the subject and I may or may not have included everything or said something wrong or whatever but...anyway my point is is that not enough is being done. And if at sixteen years old I can recognise that then I have every reason to believe that an adult should too.

Rant over.

-Ellie
[Peace&Insulin]

Guest post from Chris

I wanted to share something that my friend, Chris- wrote to me a couple of weeks ago. I asked him if he would write me something for my blog as a sort of, "guest post" and here is what he came up with. It's probably one of the most heartfelt things any of my friends have ever said to me- it makes me happy to know I have a friend like Chris. We've only known each other just over two years but I can safely say that he is one of my guy-best friends. As you can tell, I have educated him well on diabetes. He has always been interested about it and wanted to learn more for his, and for my sake and for that I will be forever grateful. I'm so glad to have a friend like him.

Thanks Chris!

I haven't known you for a huge amount of time, but we first met, properly on December 3rd 2011 which makes it about 714 days I think. I still remember, really well, when you told me you have diabetes and you were so careful about it. You acted as if I was going to run away and never speak to you again which is just crazy! From then on we started talking about diabetes and jut generally about you. I used to come up with these random pieces of information (If you can even call them that) about diabetes and then you would politely tell me jut how wrong Ii was, even though it was probably killing you inside that I'm so dumb. But yeah, you're probably going to want to fry me because of what I'm going to say, but I used to think that Type 1 and Type 2 were the same but Type 1 diabetics only went high and Type 2 diabetic only went low...Yeah, I was an idiot!

It's actually ridiculous how little people know about diabetes. Almost everybody knows at least something about cancer or some other diseases and illnesses, but so many people know nothing or are completely misinformed about diabetes- which is even worse because it is such a dangerous and common disease. All it takes is one parent who knows nothing about the symptoms of diabetes and then there's another child stuck in A&E because there is so little 'in-your-face' information about it. But anyway, back to you! After like three or four months you had crawled your way up my rankings and now you're one of my best friends and easily my girl best-friend. I can talk to you about anything and literally cannot imagine not knowing you...I like to think that I at least know more than the average person does about diabetes or at the very least I know about the informational side of it. I'm probably never going to know about the mental or emotional side of it and I hope I never will. 

You talk to me about, and occasionally I see the thing that you do day in and day out and I don't think I could ever do that. I admire you, and though I hate to admit it (:P) I look up to how you can be so mature and adult about it all and not just go crazy. The other day, especially I was sitting on the bus thinking about school and how overloaded with work I was, then you came into my head and it jut seemed impossible- like, the masses of work you must get and then the addition of possible crazy blood sugars interrupting you every time you start working. Just, how?!

Obviously, you're not the only person in the world who deals with this but you're the only person Ii know and you're the best! The sad part of all of this is the frustration that comes with being friends with you. The fact that I want to take all of the stress and pressure diabetes causes you even if it's just for an hour, but knowing that no matter what I try that won't be possible. From a non-diabetic's point of view this is one of the worst things. At least everyone knows of a diabetic, whether it be a good friend, a parent, or a child- this must be how they feel to know that someone they love is, not necessarily in trouble but going in and out of hard times and being unable to help, where all you can do is sit by and say "It will get better" and "You're doing great" Etc; despite the fact that it's impossible to empathize. 

You know I hate being serious and if it were up to me I'd live in a dream land where I can joke about all the time because there would be no serious matters to deal with. Anway, FUTURE TIMES. I really want to know you forever, and ever, you've become one of my best friends in like, a year. I'm even better friends with you that some people that I've known for like 12 years. I feel like I can talk to you about pretty much anything. I actually got proper worried every time (Only three times, thrice?) that you've gone into hospital because I just have no clue whether you're okay, or if, this is the depressing bit, the last time I spoke to you will be the last time I ever get to talk to you. I genuinely want to be friends with you forever, and not if, but WHEN they find a cure whether that's next year or on your 101st birthday I want to be there with you because I can imagine how happy you will be...I just had a vision of a 101 year old you skipping and laughing down the road with a party hat on your head! I genuinely don't know what my life would be like if I had never met you. 

Love ya Ellie!<3 

Back to injections?

I just suddenly felt this motivation to actually do this. So I've been thinking for a long time about coming off of my pump and going back to injecting and I have decided that is what I want to do. It's odd how much more motivated I feel to do an injection than bolus...I'm not sure why but I do. Plus, I'm more aware of what I'm doing on injections- if I did what I do now on injections I'd be constantly "HI" I know that my basal insulin is what keeps me going through out the day and that's not good and I can't rely on the pump like  I do any more. I just feel like it would be better for me to come off of it and inject again.

Anyway, this evening I came home and I thought "Why don't I try it out. Sort of like, a trial run with using the insulin pen?" So I got out a brand new cartridge of Novorapid, got my insulin pen out and set it up- next I worked out the correction dose and actually remembered how to calculate carbohydrate coverage and do the corrections. I even double checked them on my pump and they worked out the same. I made my target BG with the insulin pen 6.5 mmols just to trial it and things actually worked out! I used the pen to give insulin at dinner, do a couple of corrections and cover a biscuit, and came out with an 11 right after dinner, then a 9.2 so did some correcting and it came down to 7.8, I had a biscuit so I covered that using the pen, then 7.4, 6.8 then 6.4! You have no idea how proud I was of myself! I did all the calculations, all the blood sugar testing and insulin dosages and my BG was fab. My blood sugar has been the best tonight than it has been for a long time. 

Obviously, I didn't come off the pump completely because I was just testing things out tonight plus I don't have any levemir so my pump had to be my background insulin for this evening. I don't know I just feel so much more in control with injections too...like, I'm more aware of what I'm doing and actually having to do the calculations sort of motivates me more, if that makes any sense. You can see in the photo how many calculations I did. I even looked at what the Total Daily Insulin for the basal was on my pump and wanted to see if I could work it out the same with the pen- so I searched up how to do it and multiplied 0.55 by 68kg which is about my weight- and it came to 37, which is the same as my insulin pump. Also, I know that the background insulin dosage is about 50% of the TDI so I divided 37 by 2 and it came to 18...which is roughly what I used to do for my levemir, give or take a few units. But I'm not certain about that. 

Anyway, I won't mess around with all of that because it's not certain and I don't want to muck things up. But, so far so good...the pen seems to be doing it's job just fine and I actually quite liked being back on the injections, even if it was just for a few hours. I feel like going back to injections would be as though I'm 'going back to basics' - just cutting it all down to the fine tuning of my blood sugar control and really working to do things right. 

I was 5.9 before bed tonight and then it dropped to 5.0 so I just had a slice of bread and it got them up to a fabulous 6.5 as the bedtime test- which was the BG target that I set for myself earlier this evening! 

But do you all see what I mean when I say that I get these bursts of motivation- but I'm really hoping that this isn't a short-term "burst" I'm really going to try to keep at it and hope it lasts. But now I just want to use my pen to do insulin and don't want to correct using the pump...hahah- but then I know my basal/bolus would be really atrocious because I wouldn't be using the pump to bolus- it would only be there as background insulin and for me to double-check the doses. Ugh, dilemma...!

These are just a couple of photos from tonight. I had to take photos because the BG levels excited me so much. Ha ha. You can see how many calculations I did tonight to try to get this right. I'm hoping this isn't a short "burst" of motivation and that I actually keep at it. I want a good Hba1c so badly.

I really really need to try my absolute hardest to do this right, for myself, my amazing parents, my family and for my diabetes team. 

-Ellie

[Peace&Insulin] 

Anti-bullying week 2013

#AntiBullyingWeek2013

On Monday 18th November some other girls from our school went along to an anti-bullying conference in Canary Wharf hosted by the Diana Award- a charity that aims to encourage, engage and empower young people into taking a stand and standing up for what they believe in. The event saw over 400 young people from schools across the country come to take part in workshops run by celebrities to showcase our talents and gain the confidence that we need to be an anti-bullying ambassador from our school.

We did two workshops, one in the morning and one in the afternoon- my morning workshop was a dance class with Britain's Got Talent contestants Twist&Pulse, which was a lot of fun and they're both very funny. My afternoon workshop was music with Jordan O'Keefe, also a Britain's Got Talent contestant. His workshop was amazing- he taught us all the chorus of his new song, then we split into two groups and we had to write another verse for his song and Courtney, one of the girls I went with today sang it. Jordan was so impressed with us all that he decided to film our rehearsal and he said that he will put it on YouTube which is so cool! At the end of the day was a big showcase of all the workshops and the workshop leaders, being the celebrities, chose some kids from their groups- Jordan had two groups for music but he chose our group to go up and sing with him in the showcase which was so much fun. He is so lovely.

Other celebrities that were there included Will Poulter, Carrie Grant, Tony Discipline (Also known as Tyler from Eastenders), Vince Kidd who is a singer from The Voice UK, a rapper called 'Infecta', Tich who is a singer, and there were a couple of others, I think one was called Charlie Miller? He is an actor and a model, there was also an actress from Waterloo Road but I've forgotten her name. Darn.

Anyway it was so inspiring and literally so amazing. It basically taught us that we can do whatever we set our minds to, it really instils a sense of empowerment in young people and we really feel that we can make a change.

This is me and Jordan O'Keefe. I tried to insert the pictures
of me with 'Twist' from Twist and Pulse, and of me and Tony
Discipline but my computer doesn't like me tonight.

This whole 'You can do anything' stuff just really reminds me
of raising awareness for type one diabetes, like, nothing is
impossible- you can truly do anything you set your mind to, if
you are really passionate and you really, seriously commit yourself to doing something then there is no reason why you can't achieve your goal.

There was something that one of the primary school children said at the event which I found so so sweet so I'm going to share it with you all:

"Be brave, be bold and make sure you've told"
And to be honest I think that really applies to raising awareness too- be it diabetes, or something else. But stand up and speak out if you are truly passionate about something.

On instagram a couple of days ago a young girl commented on my photo and asked if I was at the event today, I replied and she said she also was- she was standing up to bullying because she is a type one diabetic and has been bullied for 4 years because of it. It frustrates me so much to hear that children and teenagers are being bullied because of diabetes. It's so terrible and people need to be educated and bullying needs to stop- not just for the unfortunate percentage of kids and teenagers with type one who get bullied- but for every child in the country, in the WORLD in fact. I'm fortunate enough to have never been bullied but I know and have heard of people who have and it needs to stop.

"Be the change you want to see in the world" 
-Ghandi

-Ellie
[Peace&Insulin]

We can do it

You have lost faith in something, Moonchild. You have felt almost desperate about something that hasn't manifested in your life. You have, perhaps pleaded with the powers-that-be for assistance, but you are feeling abandoned or forgotten. It is hard to summon faith when you feel that no one is even listening to you. But you must. While there may be no obvious explanation for the way things are, there is a design to your current situation, and it will get better. Don't lose hope, and don't lose faith, Moonchild. 

I love the horoscope that I got today. It's so accurate it's rather creepy- but cool all the same. It actually really is how I'm feeling. I have lost faith, I've lost faith in getting back into control with my diabetes, not for long. But for now, I feel stuck. 

I have no idea how I will get things back in line again, but I will do it- somehow, soon. With the help of my parents, family and friends- I'll get there.

Maybe, the way I'm struggling with diabetes now, might be the very thing that makes me come back even stronger. 

Maybe, it will make me even more determined not to fall back into the way I am now. 

And like the horoscope says- YES- yes I have felt almost desperate about something that hasn't manifested in my life- and that's control over my diabetes. 

And just as my amazing mum said to me today- "Come on, we're going to do this. No excuses- we can do it!" That's love. I know for a fact that my parents and my family and friends have my back and they always will do no matter what. 

We can do it. 

I know I will get back into control and it will get better.

I won't lose hope, and I won't lose faith. 

-Ellie

[Peace&Insulin] 

Thoughts

I had my hospital appointment yesterday, and my Hhba1c is 12%.
I've finished mentally beating myself up about it...I did all that on the train home yesterday when I decided to sit quietly and listen to my music because I just wanted to scream because I felt so so frustrated.

My Hba1c being high doesn't dishearten me, as such...but I do feel as though I let other people down more than myself, like my parents and my diabetes team- neither of them make me feel like this but I feel like it. I want a good Hba1c for myself, so I can be healthy, my diabetes team because they try and help me so much and sometimes I think I'm just throwing it back in their faces and for my parents mostly- because I know it will make them so so happy- I love them so much and their happiness is what matters most and they also try and help me so so much and I want to just be able to apply their help to my diabetes management- but I'm trying so hard and nothing is clicking.

I know what can happen if I don't do what I'm supposed to, I know what I'm supposed to do, but whether or not I do it is another story. I always wonder why it doesn't all register as it should, though...I think "Ok Ellie, today I will do this right" then lunch will roll around and it will all go out of the window. Needles and blood sugar testing and carbohydrate counting are not things that I grew up with- I lived the first eleven years of my life with out diabetes and obviously I expected my life to stay that way and it didn't. It's not as though I'm in denial about it because I accept what I have and I knew I was going to have to learn to live with it, but this whole routine with diabetes is something you're thrown into from the day you're diagnosed. It's not as easy as it seems to conform to a totally new lifestyle- especially something like the fact that what I have to do each and every day is what keeps me alive.

I really want to stay positive about it but at certain times I can feel overwhelmed by the fact that I need to get it together because it's my life until there is a cure. It's all up to me, my parents and family and friends and diabetes team can help me but at the end of the day, it's my diabetes and I know ultimate control lies in my hands and it's a big thing to acknowledge. I wish I could control my mind with some sort of remote, my mind has a mind of it's own...or if only someone could step into my mind and properly understand because I can say all of this to people but I think "I can try and explain how I'm feeling but I'm afraid people might think I'm just being lazy and that it takes a stupid person not to look after their diabetes" No one has ever implied that to me, but I know the general opinion on people who have bad control over their blood sugar is that they're "lazy" - but people don't get that it's actually really hard to do all of this.

I tend to hide the fact that I struggle and I always do a nervous laugh in clinic even when nothing is even funny because if I didn't do that I'd probably have nothing else better but to scream in frustration and say to myself over and over "WHY haven't I got the hang of this yet".

-Ellie
[Peace&Insulin]

World Diabetes Day 2013

I know I'm slightly late with my World Diabetes Day blog post...I've just been super busy with sixth form....and falling asleep on the sofa in the evenings. he he.


Anyway so as we all may or may not know it was World Diabetes Day on November 14th- or better known to those who use twitter as #WDD. It's the day that diabetics from all over the world come together and fundraise and raise awareness for diabetes. WDD falls on the birthday of Frederick Banting- the man who 90 years ago...became the reason that type one diabetes is no longer a death sentence. He is the very reason why I am still here able to fight this disease- he is the very reason why ALL of us diabetics are still here.

Isn't that amazing?
How one man literally saved so many lives, in his time and in the future- all of ours.

So before I continue this post, Happy belated birthday Sir Frederick Banting.

On Thursday I of course, went to sixth form wearing my JDRF shirt. I was sitting in the common room and then a girl from my year came in wearing a blue hoodie and said "I'm wearing blue for Ellie!" One small gesture like that made my day- it cheered me up and distracted me from the fact that I had dropped my phone in water that morning and it was out of action for the day.

 I didn't really promote the day that much in school because I just didn't have time, however I did post lots on facebook and twitter and it appears some of my friends paid attention to my post that stated "Wear blue for World Diabetes Day on November 14th!" which I was very happy about indeed.

I had no phone for the whole day so at school I asked my friend to use her phone to check twitter- I was checking the trends at 2 minute intervals- seriously. I wanted World Diabetes Day to trend so bad.

And guess what?!
It did!



I was so happy that I had to take a picture. Better yet, it was a worldwide trend- how cool is that? This was the first time I had seen it trend, it was so exciting.

Apart from all the amazing things people within the diabetic community were doing, famous landmarks and buildings were also busy lighting themselves up blue for world diabetes day.

Those are just a few examples of the buildings lit up. The London eye, The Blackpool tower, 10 Dowing Street, and to be honest I am not sure what the last one is but it's some sort of famous building.







It honestly touches my heart to see things like this, to see people coming together and uniting for diabetes. It's amazing. But more people still need to be made aware, most people still have no clue about diabetes and we need to educate them. We need to raise awareness and find a cure!

-Ellie
[Peace&Insulin]

Living with type one diabetes

What is it like being a type one diabetic? I can tell you it is not easy. It is something that you will not understand unless you are type one diabetic yourself. Type one diabetes follows me everywhere, it requires constant attention 24/7 365 days a year, it requires daily injections of insulin and/or infusion of insulin via an insulin pump- in conjunction with multiple daily finger pricks to ensure that my blood sugar is at a safe range. Type one diabetes is different to type two diabetes, my body does not produce insulin, a type two diabetic’s body cannot utilise the insulin that their body produces.

There is no known cause for type one diabetes; all that is known is that the body’s immune system attacks the insulin-producing cells in the pancreas and destroys them. And no, it is not caused by eating too much sugar. Without insulin, a person will die. My body cannot keep my blood sugar stable, and this is very dangerous. High blood sugar and low blood sugar are something that have become integrated in my day to day life- shaking, feeling thirsty, feeling tired, weak…exhausted, are all feelings I am all too familiar with. The line between being perfectly ok and being dangerously ill is a very fine one.  High and low blood sugars are treatable if caught early enough; but both can lead to a coma and/or death if left untreated.

I have been hospitalised three times since my diagnosis due to my blood sugar being too high, not including the three days I spent in hospital when I first heard the words “there is no doubt you have type one diabetes”. June 21^st 2009 was the day that my life changed forever; it was the day that my life was thrown into my own hands. It was the day that I had to begin learning how to keep myself alive, at just eleven years old. That is an incredible weight to bear; I was old enough to understand my life was going to be different, but too young to understand exactly how it would be.

Type one diabetes has stripped me of my care-free life; I have had to grow up way before my time. It is hard to keep up with all the blood sugar testing and giving insulin and counting the carbohydrate in my food- it is not the way I lived for the first eleven years of my life. Now I miss some days off of school for hospital appointments, and even a simple cold could mean a hospital admission. It is a constant balancing act.

Type one diabetes has its immediate complications, but that’s not all. Long-term effects of type one diabetes include blindness, heart disease, limb amputation, kidney failure, neuropathy and hardening of the arteries. The very last thing I do when I go to bed at night is test my blood sugar to make sure it is not too low or high so that I actually wake up every morning.

Ever since I was diagnosed I have been determined not to let it get me down and to raise awareness of this disease, type one diabetes has made me stronger and has made me realise that you never truly appreciate how precious your life is until something threatens to take it away. Although I go through what I do I still achieve things in my life, I do well at school, I have a wonderful family and supportive friends, and I smile every day because I am living my life.

I have had my fair share of ups and downs and will continue to do so, worry, fear, pain and not feeling so great will always be a part of my life until a cure is found, but I will experience happiness when I have good blood sugars and I also love my life. I know life could be worse and I am doing my best to raise as much awareness of type one diabetes as possible.

I am a teenager with type one diabetes, but I want people to know just what it takes to live with type one diabetes.

Before I was diagnosed

Before I was diagnosed with Type 1 diabetes,

I didn't need to prick my finger,
I didn't need to inject insulin,
I didn't need to wear an insulin pump,
I didn't need to fire a needle into my stomach every three days,
I didn't need to feel the sting from my insulin,
I didn't need to feel the sting from pricking my finger,
I didn't need to avoid injecting in the same place,
I didn't need to rotate sites,
I didn't need to avoid pricking the same fingers,
I didn't need to have glucose tablets in my bag,
I didn't need to have glucose tablets by my bed,
I didn't need to have a cupboard full of supplies,
I didn't need to worry about low blood sugar,
I didn't need to worry about high blood sugar,
I didn't need to go to the hospital every three months,
I didn't need to explain to my friends what to do if I passed out,
I didn't need to explain to my little cousin why I wear my pump,
I didn't need to wear a Medical ID bracelet,
I didn't need to worry about long-term complications,
I didn't need to wake up in the middle of the night to treat low blood sugar,
I didn't need to stop my work at school to treat a high blood sugar,
I didn't need to tell my teachers about low and high blood sugar,
I didn't need to count the carbohydrate in my food,
I didn't need to carry a carbs and cals book around,
I didn't need to weigh my food,
I didn't need to work out an insulin dosage,
I didn't need to wake up earlier in case I went low,
I didn't need to draw blood from my fingers,
I didn't need to know the number for clinic,
I didn't need to hear a hba1c result every three months,
I didn't need to avoid going into DKA,
I didn't need to avoid passing out,
I didn't need to fight every single day to protect my organs,
I didn't need to keep vials of insulin in the fridge,
I didn't need to drinks tons of water for high blood sugar,
I didn't need to force-feed myself food for low blood sugar,
I didn't need to tuck in pump-tubing for fear of it being ripped out,
I didn't need to carry around extra-supplies,
I didn't need to wear a continuous glucose monitor,
I didn't need to know the symptoms of low blood sugar,
I didn't need to know the symptoms of high blood sugar,
I didn't need to learn how to inject myself,
I didn't need to learn how to use an insulin pump,
I didn't need to worry about not waking up in the morning,

I didn't need to depend on insulin to live.

Diabetes isn't just test and inject.
It's so much more.

-Ellie
[Peace&Insulin]

JDRF T1 Youth Ambassador day

Friday 1st November 2013 saw me and my dad trekking up to London for the JDRF Youth Ambassador day. Well, I was actually attending the day; my dad just strolled around London for a few hours whilst I, along with a few other youth ambassadors and their parents were trained in the fine art of public speaking.

I got up early that morning as the event started at 10 am.
I had a shower, I ate breakfast, all the while whilst dealing with problem blood sugars, and listening to my mum and dad debate on what train my dad and I should get.
In case you were wondering we got the 9:32 train.

That got us into Euston station at about 10:02 if I remember correctly. We got to the station, literally ran up the overly lengthy escalators- seriously my legs were burning. Don't run up the escalators, they're long and not to mention the fact that the steps are each like a meter high. On to more important matters, the extortionate train fares wiped my oyster card of the few pounds it had left and so I could not get through the silly barriers. The station lady or whatever her job title is turned and said "It needs topping up" with the most blank expression and monotonous voice I have ever heard.

Right...so it needs topping up yet, the top up machines are on the OTHER side of the barrier- where is the logic? Thankfully my dad got through before me so he could top it up for me.
"Dad, here take my oyster and top it up over there please?"
"Ok."
"Do you want me to give you the money for it?"
"Nah it's alright I've got it"
"Okay. Just press that button...yeah that one. No wait go back, yeah that one there. Ok press it again. Ok now put the money in...it fell out. Yeah that's enough, alright now hold it on till it beeps again, keep holding it...keep holding it...ok thanks!"

After I finally managed to get out of the station we continued our journey to the University of London union which is where the action day was taking place. My dad and I both got out our phones and we had to find Malet street...ok yeah sure with the help of Google maps we'll find it in no time. Right?

No. No in fact it took us over half an hour to find this place.
HALF.AN.HOUR.

We were honestly so confused and Google maps was not even helping the situation one single bit. It basically kept directing us to one place, but by the time we got there the little tracker had somehow moved about three roads to the left and it felt like we were chasing the blue arrow. So my dad asked a foreign man where Malet street was, obviously we didn't know this before we asked him...the man had absolutely no clue so he was hopeless.

I'm sure by now you will all be glad to know that we did eventually find it...45 minutes later. Anyway the main thing was I could still join in and they actually hadn't started doing anything yet. I waved bye to my dad and turned around to face five other teenagers...all type one diabetic...all wanting to make a difference and learn about public speaking. Samuel, Miles, Georgia, Milly and Stephanie were their names.

If I'm honest...none of them really talked. They all knew one another already and so Miles and Sam would go off together during the breaks and Georgia, Milly and Stephanie went off to speak to their parents...so I did my own thing really. Sent a couple of texts to my mum...

"NONE of these people have spoken to me:( they're all with their parents"
"Oh Els, talk to someone. Are you enjoying it at least? x"
"Yeah I'm hatting now:) & Yeah its good xx"
"Good I'm glad chicky. Make the most of it x"
"Thanks mamma xx"

If you follow me on Twitter you would know that the person I was so happy to be chatting to was Annie! Or in twitter terms: @understudypanc
I knew she was going to be there that day and she approached me during the break after I tweeted:
"I THINK I see you" Basically I was too apprehensive to say hello because I thought what if it isn't her? How embarrassing would that be?

I met two of her lovely daughters and had a nice chat over break time and again at lunch time. It felt so strange to be talking to her in person rather than on twitter. I always love putting faces to...usernames. I'm so glad I got to meet Annie and she is so fabulous! as are her daughters. At the end of the day she met my dad and we all had a chat for a few minutes...but it was rainy and cold and everyone had to get off home so we couldn't talk for long but it was nice all the while.

Let me rewind a bit...Ok so we started off introducing ourselves and learning the basics of talking in public. Then we were asked impromptu questions, I think mine were "If you could have invisible powers, what would they be?" and "If you were invisible what would you do?" We were all asked different ones. The point of those questions was for us to let our personalities come through when speaking. The lady said I was very animated and clear, she also said I have a lovely smile because I smile at people when I talk to them- so that was fabulous feedback.

Then we were informed that we had to deliver a 2-3 minute speech at the end of the day on a topic of our choice but the lady said she wanted to know about Type one. She referred to herself as "ignorant" on the matter and so wanted us to teach her something about what we deal with. She said "I assume you're all sufferers of diabetes?" and Sam replied.

"I'm not a sufferer, but yes I do have diabetes"
And she commended him for that, as we all did. Positive attitudes are always great.

My speech was about social media and diabetes and I was discussing my speech with Simon from JDRF before-hand as we all had a chance to go off and practice for a few minutes. And I was telling him about my speech in Parliament and how social media really helped me realise my passion for raising awareness for type one and things.

So I delivered my speech and had virtually no negative feedback...not that any one did anyway. It was all very constructive criticism so I suppose it's wrong to call it negative. She said to me "Try not to say 'you know' because actually, we don't know. You're telling us and educating us. Only you know" The rest of my feedback was just about how she enjoyed it and I that I'm very clear and animated when I speak so, I was happy with that.

All in all I had a really good day and actually by the end we were all talking to one another more and of course, everyone was all really friendly. It was nice to meet some of the staff from JDRF and to meet Annie and her girls, and to meet some other teenagers with type one. It was a really productive, fun day thanks to JDRF and I'm glad I took up the opportunity to go.

-Ellie
[Peace&Insulin]

Diabetic conversations

When I was diagnosed with type one I was attending school at the lower site of my school because I was only in Year 8, when I got to Year 9 another type one diabetic girl had just come into Year 7, she was always in the room with me whilst we did injections. Suddenly I wasn't alone any more. Well, the only problem was that she was slightly rude and not easy to talk to at all; very dismissive. 

Anyway the time rolled around and I moved up to the upper site because I went into Year 10. Now two years later, the diabetic girl has moved up to the upper site too. She's much nicer now. 

I saw her in the corridor last week and she came up to me and said hello, and she said;

"Are you on a pump now?"

"Yes I am"

"Oh cool"

"Are you?"

"No I'm not" 

That was it. That was as far as the conversation got but my friend then turned to me and said, "That's a conversation only diabetics can have!" and it's true. Who else can randomly have a conversation in the middle of the corridor about an insulin pump? I know I can't have a conversation like that with my friends even if it's a short conversation. 

I had a message on my phone a few days ago from my diabetic best friend, Paris. She lives in the USA and we have been talking since March. We clicked instantly and I have talked to her pretty much every day since. She is a twin like me, her twin doesn't have diabetes; just like my twin. I love Paris because even though we haven't met and have been talking for less than a year, I feel like I've known her for years.

The message read: "Your Par Par is tired of diabetes Ellie." 

I felt sad, because I've always seen her stay so positive about type 1 but she's been having a rough time lately and I guess- sometimes it just gets too much. This is the rest of the conversation:

"Me too Paris"

":'( :'( :'( :'("

"What's been happening with it?"

"My blood sugars are soo BAD! 400* all the time. My energy is gone too, so tired and those needles are so painful. I don't even have energy to eat so I just eat candy to keep my blood sugar up the last three days"

"Aww:( Yeah I feel like that a lot." 

"Yeah! I went to wash my hair and in the middle of it I just shut down and I lay there for a while. My mum keeps saying to have vitamins but it's not working" 

"Aww, some days I feel like giving up too. I cry sometimes and I feel angry because it's hard and everyone around me doesn't understand" 

"I know!! My mum is so mean about it and it makes it worse. Everyone thinks they know what they're talking about. I cry every single day. I feel like I'm going to give up" 

"My mummy isn't mean to me about it- but she said the other day 'It's not difficult Els, just do it!' but I really can't sometimes"

"Exactly! Especially since we're teenagers and diabetes is a huge responsibility. My mom tries to help me by searching for ways to keep my blood sugar balanced but if I tell her something is wrong she just says 'oh' no words of support or wisdom"

"My mummy gives me words of wisdom and tries to help me but :( I feel like nothing is helping me now. I'm so totally stuck" 

"Meeee Tooooo!!! I need a vacation or something needs to change :'( :'(" 

"We need a cure"

"Yeahh:( Sometimes when I think this is a life-long thing I freak out. We need a cureeee!

"Yeah:( Even as soon as I leave the house I can never relax because I'm thinking about diabetes 24/7. It's so annoying!" 

"Yeah and people say it isn't your life and it's just 'a bit on the side' but it is my life. It's what could take my life and looking after it is what's going to allow me to live my life" 

"Exactly. I hate when my doctor says that. I feel like it's completely my life sometimes." 

*Paris said 400 because in the USA blood sugar is measured in mg/dl.

I don't know about you...but I know this isn't a conversation two teenage girls should be having.

But the amazing thing about this conversation is how much we understand each other. It's so easy to talk to Paris because she knows exactly how I feel and I know how she feels. That's what I love about talking to other diabetics. 

But my point for this blog post is that it's an amazing feeling when you talk to someone and everything they say you just think "Exactly!" It's a weight lifted off my shoulders to know that I'm talking about diabetes to someone who truly understands what we go through every day. That also goes for the people on the #DOC and for the times when my family understand- even if it's just a little. A little goes a long way. 

-Ellie

[Peace&Insulin] 

Who am I?

Hi,

I'm Ellie,
I'm sixteen years old.
I was born on July 18th 1997.
I live in London with my mum, dad, brother and twin sister.
I have a cat, Fudge- and two bunnies called Fred and Perry.
I'm really family oriented, but I have great friends.
My mum is my inspiration.
I'm obsessed with the sky, I think it's so pretty.
My favourite season is Spring.
I'm really afraid of wasps and bees.
I like listening to music, I get through way too many headphones.
I'm in Year 12.
I study History, Psychology,  Media and English Literature.
I really like the colour, Coral.
I'm tall for my age at 5 ft 10.
I like early summer mornings- the air is really fresh.
I'm more of a fruit-eater than vegetables.
I love sunny evenings- I like to sit in the garden as the sun sets.
People say I can type really fast.
I'm quite sarcastic.
I like to read although I don't read nearly as much as I should/want to.
I got a red belt in Karate a few years ago- then I quit.
I got an A* in GCSE History.
I love sausages and mash.
I'm afraid of heights.
I don't like loud noises- they hurt my ears.
I used to love Roller-coasters...then I realised I was afraid of heights.
I find twinkly lights really pretty.
I'm normally quite reserved.
I'm a pretty crazy person if you spend enough time with me.
I'm a cat person. I like puppies but...cats.
I'm obsessed with skittles.
I'm a July baby.

I'm a twin.
I'm a daughter.
I'm a friend.
I'm a niece.
I'm a cousin.
I'm a younger sister.
I'm a granddaughter.
I'm a great- granddaughter.

I'm also Type one diabetic.

There's more to me than Type one diabetes.

-Ellie
[Peace&Insulin]

Understanding

I didn't struggle with it when I was first diagnosed. When the doctor in A&E told me I had Type one diabetes I sort of just...sat there. I accepted it, though. I knew what I had just been told, or did I?

Did I really, truly realise the bigger picture on Type one diabetes aside from the finger pricks and injections? At eleven years old? Nope. No I didn't. Because if I did, the next four and a half years would have been a breeze because maybe, just maybe, I would have been prepared. I mean I guess I was prepared in the sense that I knew high and low symptoms, I knew how to inject, I knew how to test my blood sugar- but it was all still superficial stuff. Stuff that was on the surface. It would probably be better if doctor's and nurses would explain the whole "You will have to inject for the rest of your life. But it will be okay" speech better. Because, yes it will be okay...but four and a half years after that sentence I realise it takes a lot of strength and vigilance to make sure it will really be okay.

You leave the hospital with a false sense of what you had just been thrown into. I don't remember being told that I will have days when I can't manage, that it will upset me sometimes and on a few days of the year I would outright hate it. The implications of a monotonous, 24/7 routine are not yet known...until you learn for yourself. It's all a learning curve, even if it's learning what to do in the event of a low blood sugar, or what to do when you hit a mental block and want to give up for a day.

But I also learned that I can do it. I learned that I can over come these "mental blocks" where my brain almost switches diabetes off all together and says "I'd rather not deal with diabetes today, or the day after, or the day after that" I come to points in my life with Type one diabetes where I feel like things almost become too overwhelming at times- being a teenager I'm constantly on the move with school and the like, so I don't find time to "squeeze" diabetes into a free time frame that I have because I'd rather be doing something else.

That's what I can assume anyway...
Assume? How can I assume something that came straight from my own mind? I can only assume because I do not know.

I don't get why I don't do my blood sugars or give insulin like I'm supposed to, I don't understand why feeling thirsty has become a general everyday feeling for me and some days the feelings just aren't there at all...it's just the blood sugar. The blood sugar that creeps up like a tiger hunting it's prey; it pounces when least expected and it's predictability is unaccountable. Then again neither is mine.

Some days I will have motivation to do what I'm supposed to. I will find my fighting spirit and it will be stronger than ever some days. Then, the next day things can completely change and I will fall out of the routine having only just got back into it the week before- and then I'd have to start all over again. It is tiring, it is tough dealing with an incurable disease that is literally a 24/7 thing. At sixteen years old I feel even more torn.

I don't normally make posts about negative subjects but I have struggled A LOT this year with Type one diabetes more than any previous years.

I am the type of person who does not like to depend too much on others, I don't like to feel like I need help to do something. I know my parents, family and friends all want to help me and I love that they do- I just have a hard time accepting it...probably most because I don't want to burden them with the real, physical (blood sugar checking insulin-giving demands) Type One. It's bad enough that they see me deal with it and it affects them too but then add on them actually having to take on some of the demands- I just couldn't put that strain on them. Ever since I was diagnosed a few weeks shy of my 12th birthday I have seen myself as old enough to do it on my own- and I have done, with my parents love, support and supervision.

Then I ask myself...why now am I feeling as though I need help more than ever now? And it's because I will openly admit that, yes...I am struggling right now.

I know I'm never alone because I have my parents, family, friends and the #GBDOC. And everyone is always there to help me and of course I accept it most times; I just find it difficult to.

Then I always think my parents don't even understand how I feel enough to help me...I'm glad they don't understand it fully, because obviously that means they don't  have D. Then again it makes me sad and I know it upsets them when there always appears to be this glass pane separating our emotions...mine feeling raw in the face of diabetes 24/7, theirs feeling raw in watching it and worrying for me. But I feel it physically and emotionally. Theirs is emotional but I guess maybe the pounding heart and headache stemmed from stress...are physical. But I don't want my parents to be stressed! So I am so TORN. Do I let them help me and effectively throw an extra truck load of worry and responsibility on their shoulders? or not let them help me but try and re-assure them in saying that I will be able to manage this, one day- and the day will come soon.

Although I say they don't understand they are still affected by type one. But they cannot see inside my head, or feel the worry or the fear or the frustration that I feel at not managing my type one the way I should be. I love my parents so much and would never reject their help because I don't want them to help me- of course I do, but then I want to be able to do it on my own and not have to rely on them- it's unfair on them all the more.

I don't even know if that even makes sense.
*Enter frustrated keyboard nonsense here*: bfsngkrfojsejgorengifsjfringijsofrjfsl.

Yeah.
I feel frustrated at the moment and still haven't been able to figure out how I'm going to manage this. The important thing right now is that I have my parents, family and friends all supporting me and encouraging me and doing their VERY best to help me even though they don't fully understand how it all is for me right now. I need to get into a mind-frame where they don't have to understand quite so much...at the moment the way things are going with me and diabetes right now are things even I don't understand.
But I will get there soon, and I am getting there. I'm working on it.

-Ellie
[Peace&Insulin]

Diabetic ketoacidosis

Sunday, Monday, Tuesday.
One of the most boring days of my life. This week I had an unfortunate encounter with DKA- for the third time. Third time lucky? No. The third time was actually the worst bout of DKA I've had. From the vomiting, to the extended stay in hospital, to having to be on the adult ward and being bored out of my mind.

And lets not forget my "ward buddies" Pam, Eleni and Maria- all of whom were three very confused old ladies. 

Let me take you back to Sunday.

Sunday morning I woke up at 4am- thirsty. Go downstairs, pet the bunnies, have a drink. Check blood sugar: 12.4. Ok not too bad, just correct and go back to sleep. Obviously diabetes had other ideas for my Sunday. 

When I woke up in the morning I had a really bad headache, blood sugars hardly budged. Staying high at 11.9. I ate breakfast, but not much because I felt sick. Then I did my best to carry on with my day but I was so unbearably weak that I just wanted to sleep by the time it reached midday. I checked BG, my eyes nearly fell out of my head when 16 screamed back at me. Took out the pump for the billionth time, and entered in my blood sugar so I could correct. Then, I waited. 

And fell asleep for ten minutes...and woke up; feeling incredibly groggy. By now my blood sugar had crept up to 20 and decided I should check my ketones with the ketone meter. 

5.7 

I know that any blood ketone reading above 3 is really bad so my heart skipped a beat. I went downstairs, guzzled two cups of water and changed my infusion site. All the while whilst thinking "Please work please work please work" 

1pm rolled around and I checked my blood sugar. 26.9. WHAT. I was in despair; I had absolutely no idea what was going on and was really fed up by this point. Anyway I asked my mum to get me some more water and we also did a correction with my injection pen- having drank all the water in about ten seconds. I felt the dreaded nauseous feeling and before I knew it I was hunched over the toilet and it felt like my insides were about to fall out. 

Ketone test: 6.6 

Ok, this is bad now.Hospital. 

Here is pretty much how it went after that:

Drive to the Hospital. Bicker with receptionist to be seen quicker than three hours. 

Fifteen minutes later- "Ellie Huckle?" Finally. 

Triage nurse. Blood sugar 26. Heart rate 144 b/pm.

Go through to A&E. See funny Australian doctor. 

Questions asked "How do you think it happened?" "What happened?" blah blah. 

Get I.V's started and sit through painful attempt to take blood from hand, for the record it took two attempts, my veins were not co-operating. Yes I did mean to put the 's there. I had one I.V drip in each arm. How fabulous for me- I literally couldn't move my arms or the FOUR different I.V pumps that were attached to me would start to beep like there was no tomorrow. 

I was in A&E from 2pm till about 10pm on Sunday night. Then I was moved to CDU- Clinical Decisions Unit. Apparently because I am 16 years old now I am seen as an "adult in the eyes of the NHS" so that ws pretty unfortunate because I was literally the youngest person on the ward. I had my blood sugar tested every. single. hour. and had my blood pressure done every four hours. Yes, by every single hour I mean all the way through the night too, but I suppose it was fine because I couldn't sleep anyway, for various reasons... And now you get to hear all about Pamela, Eleni and Maria- the three old ladies who were in the same bay as me. Yippee...

Let me just tell you that Pamela and Maria were highly confused and for the most part did not even know where they were. Maria was cute for the first few hours, then she got incredibly confused. Pamela screamed bloody murder all night and day and well Eleni was just really cute and every time someone spoke to her, the reply was "Meep" 

Maria was irish from what I could gather and very chatty once you got speaking to her...the only problem was that she didn't quite understand what she was actually talking about. She thought she was in a hotel and that we should all go "downstairs for breakfast" so she could get to her room and make herself some tea because it was "raining outside and when it rains you really just want to be in your room with a kitchen and make yourself a drink" I had no idea what to say to her so I just sat and listened. Eventually she would stop chatting away and attempt to get out of bed where she would be greeted by some very panicky nurses repeating "You're in hospital not at home!" 

This all happened on Monday. 

I hardly noticed her on Sunday night- mainly because it was very late and she came in late. I also actually managed to sleep for a little bit on Sunday night, apart from the times I woke up for blood sugar testing and had a venous blood test at 3am Monday morning. The doctor came in at 3am.

-"Ellie, sorry I just have to take some blood!" 

-*wakes up in a bit of a daze* "Okay" 

He took about two minutes pressing on the veins all the way up and down my arms looking for a vein to stab. I had I'V drips in both arms so this made it especially hard for them to find a vein. He had to peel of the I.V adhesive slightly so he could poke the veins that were around there- he literally had to dig the needle around in my vein in the hope that it would give some blood. Nope. Attempt number two. More manipulation of my veins, tiny amount of blood. "That should do!" 

Half an hour later.

"Ellie I'm really sorry but the machine wouldn't process it so I have to do it again!" 

Attempt three- 3rd vein. Third time lucky this time? Yes! Although this time it was taken from a vein further down my arm and it was even more uncomfortable. Oh well at least I could get back to sleep...ha ha what was I thinking? I had about an hours sleep before the 900th blood sugar check and from there on I couldn't fall back to sleep. 

I had my chat with Maria that I mentioned earlier. Then my mum and sister came to sit with me for a while- then mum had to go to work but the Nurses let Lauren stay with me because I was "the baby of the ward" Aw, cute. The 3am blood test showed that I was still slightly acidotic so I had to stay on the I.V drips. Then rolled around the most painful blood test I have ever had. I'm not scared of blood tests but this one freaked me out a little. 

A young (and good looking should I mention) doctor peeked his head round the curtain and once again "Sorry, I'm here to do your blood test!" So he came over to me and noticed the "dilemma" that was, I had two drips in each arm. He disappeared off again and a few minutes later he came back, then he left again and came back with another young and good looking doctor, yes. I'm sorry but they were both good looking! 

So the second doctor sat at the end of my bed and felt for my veins and then he said 

"Okay, there is a different way that we can do this, because you have the drips in both arms. We will have to do an ABG anyway and take blood from your wrist" 

That didn't sound to fab...so I just said okay and let them crack on with it. 

He asked for my hand and I had to turn over my wrist to expose all my juicy veins for the needle to violate. 

ABG stands for Arterial Blood Gas. This was no ordinary blood test, they had to get blood from the artery deeper in my wrist and this required a bit more patience, a higher pain tolerance and a longer needle. 

At first it felt, okay...because he only put it into my wrist slightly. Then the next thing you know, he pushes it even further down. It felt like my wrist was cramping up- whilst he was doing this he was basically teaching the other doctor that "this is how you do an ABG" Surprisingly, despite the pain, I didn't flinch. Luckily my pain tolerance is quite high, but my sister was squirming as she watched. He mentioned that I was "dealing with it quite well"...yeah I was dying inside. 

This blood test showed that the acidosis was gone. 

My arm is still suffering the after effects. The bruise was just developing there. My wrist is all the colours of the rainbow now.

I was supposed to go home on Monday but they wanted to keep me in for another night until I got back on my insulin pump and they wanted to make sure my pump kept my blood sugars level and that they stayed stable. I was very sad because I was so bored and Pamela was starting to scare me because she would just randomly wake up and start screaming or being really verbally abusive to everyone. 

Monday night was even worse than Sunday night despite being off of the drips, being back on my own pump and being able to use my OWN pricker to test my blood sugars with because hospital finger prickers are brutal. My fingers are still feeling bruised and it's been nearly two days since I got home. It was only worse because Maria the confused old lady was especially active and decided she would come over to my bed, having wandered around the room- played with Pamela's medicine and shut all of the windows.

"There is someone out there! When you see her at the window, let her in and see what she wants" Guys I am telling you I nearly passed out. She was creeping me out. Obviously I knew there was no one out there but then you get flashbacks of scary films were everyone thought the old lady was crazy but turns out she was actually a witch or something. She was so confused. I mean, earlier on Monday she took her cutlery, stood up feebly, then ran off like speedy gonsalez! I'm telling you, she was constantly on the run. 

I had a 2.8 and a 21.6 on Monday night. Which was really annoying because my sugars had to stay stable in order for me to leave. So I hardly slept at all and woke up properly at about 6am. The nurse had the cheek to say "Good Morning" at 5:30am. I was thinking, are you kidding me?! The sun is not up therefore in my books this is not morning. It's the middle of the night. 

The doctors did their rounds. 

The usual. Hourly BG checks. Ketones gone. Blood sugar 4.5. No more I.V's. Energy back. Eating and drinking. Come on, let me go home! The lady doctor who came round in the morning wanted me to have lunch and see if bg stays stable then I can go home. But then the lovely man from the diabetes team came down to see me and got them to let me go home because he said there was no point in them keeping me there. YES. I was so happy. I got the cannulas taken out of my arms, packed up my stuff and waited for the discharge papers. 

Eleni said meep one more time before we left and Maria and Pamela were snoozing away. I said bye to all the nurses and doctors and was so happy to see the back of that place. The sun was shining and it was a great time. Once I got home I said hello to my bunnies and my sister and I had lunch. Then we both crashed out on the sofa for like, four hours. I showered, went on my computer, checked my e-mails, informed my family and friends on my arrival home and finally got to catch up on cuddles with my mummy and daddy (hehe) and watch TV.

It felt SO good to sleep in my own bed too. Even if mine and my sister's room was very messy it was home. I went back to school the day after I was discharged, on Wednesday. Boy did I have a story to tell all my friends! 

My arms are still sore a couple of days on but I'm okay. My blood sugars are under control and I'm so glad to be out of that hospital. 

DKA is one of the worst things a diabetic could go through. But I survived and although I was getting fed up by day two I kept my head up. I always try to remember that I was given this life because I am strong enough to live it. 

-Ellie

[Peace&Insulin]