Monday, 30 December 2013

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]

Monday, 23 December 2013

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]

Wednesday, 4 December 2013

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]