Wednesday, 30 April 2014

Coco&Lily

Recently I have been in contact with a man called David from the USA, who is very passionate about changing the lives of people with diabetes in developing countries, who do not have access to insulin like most of us are fortunate enough to have. All of us affected by type one diabetes or who have it are very aware of the fact that insulin is what literally keeps type 1 diabetics alive. And David and his wife are also very aware of this, because he has been personally touched by type one diabetes, too. He has asked me to share their story and the passion behind their organisation: Coco&Lily, and just what it is.

Him and his wife have three children. Eva who is six, Lily who is  four and Cohen is two. Lily and Cohen have type one diabetes. They were diagnosed when they were around 15 months old. It has been a constant battle with their blood sugars ever since the day they were born and the fact that they are toddlers makes it even tougher! Lily is on an insulin pump and they are working on getting Cohen one too.

Type one diabetes is very tough on parents and those with it alike, even with adequate access to insulin. So it's hard to imagine just how tough it is for people in developing countries. Coco&Lily's aim is to help make type one diabetes a survivable illness for many families around the world, so that children can stop dying from type one diabetes.

"An opportunity to change the world through colouring books. Lets work together to ensure no child ever dies from type one diabetes"

Here are my thoughts on the matter:
One of the things that is stressed to many of us touched by this disease is that it is fatal if left untreated. And the simple, but sad truth is that in developing countries those who are diagnosed are effectively "left untreated". Mothers in developing countries are still tasting the urine of their children for glucose, something that that is far behind those of us who are fortunate enough to have access to treatment. Children are literally dying slow deaths from this disease; we are thankful for the fact that we have insulin and for every new day; these children are thankful for even just one more hour of their lives until this disease will eventually kill them.

I am and always have been since very soon after diagnosis, aware of how fortunate we are to have access to insulin; but knowing about the people in these third world countries makes me realise it even more. Every year we celebrate yet another year living with type one diabetes. Living. Children and adults diagnosed with type one diabetes don't get the chance to live with type one, as soon as they are diagnosed they start to die from type one; and that's not fair, it's really not fair when there are so many people all over the world who are fortunately, striving with this disease; it's not fair because this disease shouldn't be terminal any more in this day and age, but is is for some. It's sad that they have to die from a disease that they would survive if they just had access to the proper medical supplies and equipment? In developed countries it's talked about how type one diabetes used to be a terminal disease, how before insulin was discovered people would die from it within days or weeks of diagnosis, but what we don't quite realise is that even now, for many people in other parts of the world, it still is a terminal disease.

Insulin was developed over 90 years ago and in some countries is still unattainable, unaffordable or both.
More than 80% of diabetes related deaths occur in low and middle-income countries.

Something needs to change. 

And so that is why David and his wife created Coco&Lily. But Coco&Lily also works both ways, while they are very aware of the struggles in developing countries, they are also very aware of the struggle that children over here still face despite access to insulin...after all, in developed countries insulin isn't the only aspect of a life with type one diabetes, insulin is a treatment for the disease and we do our best to stay on top of managing it, but we also deal with what comes along with it, like the emotional and physical struggles. I still struggle with type one diabetes and I'm sixteen years old, so imagine what it is like for little children who don't even understand why what's happening to them is happening.

They feel the prick that comes along with blood sugar testing, they feel the sting of multiple insulin injections a day, they taste the chalky glucose tablets at 2am when their parents wake them up with a low...but they don't understand why. They don't understand why their parents have to poke them every single day. It is also tough and heartbreaking for the parents and so Coco&Lily can help both ways, it helps the children understand and  it also makes their parent's jobs a little easier; although having a child with type one diabetes is never going to be easy no matter how old the child is, but it provides comfort for the parents. Knowing that their child possibly won't be so distraught for the next cannula change or the next injection or blood sugar test. Sometimes it's the little things that make all the difference.

The books come as part of a kit and once the kits are created they will be for sale on the Coco&Lily website. Coco&Lily were able to partner with the International Diabetes Federation's programme 'Life for a Child',  and so those who have diabetes or have been touched by diabetes can purchase the kits, and for each one sold, the money goes towards a child's diabetes management for one month. David told me that they will also be making new products and building on the product line to make more and more of an impact.

Here is the link that is on the Coco&Lily twitter page.
https://www.indiegogo.com/projects/coco-lily-type-1-diabetes-education-for-kids

I know that this is an american organisation but I know this blog reaches out further than just the UK and I know that it is read by lots of people in america too. So yeah...although I may not be able to help so much with the actual fundraising I will try my best to help David and his wife spread the word about Coco&Lily and just in general help to raise more awareness, of the fact that people in developing countries don't have access to this vital insulin that will keep them alive.

You can follow David and his wife on twitter at @coco_and_lily

Thanks for reading:)

-Ellie


Thursday, 17 April 2014

Reflecting on life

At times I find myself looking at the vial of  insulin and I just think, how weird it is that without it I can't be alive; without it I wouldn't be alive almost five years after being diagnosed. I'm not even sure that "weird" is the correct word; there isn't really a word to describe it, actually. I don't think about it often because I have to get on with it and do what I have to do to stay alive, but when  I stop to think about it for even for just one small moment it hits me, it hits me just how much every breath I take depends on the insulin that sits in my fridge. I live on something that too much of could kill me, then again so could too little. It's a delicate balance. I am insulin dependant. Thinking about being a type one diabetic you remember their meaning, a meaning that you don't really have time to dwell on most of the time because you're too busy keeping yourself alive.

Insulin. My immune system attacked my pancreas and stopped it from producing insulin; a hormone that I had hardly any idea about before. But then again why would I? I was 11, but after being diagnosed I knew all about it...I know too much about it. I know what I wish I didn't need to know.
Dependant. Without the replacing the insulin that my body no longer makes, I would die. It's simple.
It's mad how I was so completely unaware of a hormone that contributes so largely to sustaining life. But the fact of the matter is that before diagnosis I didn't need to know. I didn't need to know that the pancreas produces insulin and that insulin regulates blood sugar, because my body was doing all of it's jobs as it should be, and then this disease came along and took away one bodily function, and now threatens the rest of them more and more as time goes on.

The world of type one diabetes was one that I was completely thrown into and now I have all this new vocabulary in my head that has conjured up over the last five years, and it will probably continue to grow..."Hba1c" "Diabetic ketoacidosis" "Bolus" "Basal" "Novorapid" "Insulin pump" "Hyperglycemia" "Hypoglycemia" to name a few. My brain is jam-packed full of information that I didn't learn on my own terms, but information that I was forced to learn. It made me grow up, fast. And you are literally thrown into this world of blood sugar checking and insulin injecting. There can't be a gentle introduction...you can't have a gentle introduction into the fact that you will be responsible for every breath you take from the moment you are diagnosed.

There is a line that Nick Jonas says in his song 'A little bit longer' which he wrote about his diagnosis with type one diabetes; he says "You don't know what you've got until it's gone" and it's true. You don't know that you have health until it's gone. In saying that people don't know I mean it as in, it is definitely something that is taken for granted unless you have had an illness or have an illness. For me, what I had was a fully functioning pancreas; what I now know to be a very important organ and I don't have that any more. It's amazing how much our bodies work round the clock to keep us healthy; it's like a machine. Machines get oiled regularly so that they continue to work, and perhaps a mechanic would take this oil for granted- as long as it's keeping his machine healthy and he has it on hand, then it's fine; but then if that oil spills and it's gone; then suddenly it's worth becomes so much more...he realises just how much his machine needed that oil. And I think that insulin is a little bit like the oil for our bodies; it's one of those things that once it's no longer produced...you realise how much you need it. Type one diabetes has taught me not to take health for granted, but what I have also learnt is to appreciate the health that I still have and type one diabetes makes me work very hard to preserve that.

My life as a type one diabetic hangs in the balance, but I try not to focus on it too much. When I do focus on it I understand, I understand why but I wish I didn't understand why and I wish my life didn't depend on a careful balance of insulin dosages and blood sugar levels; but it does. However what I try to focus more on is the positive; the positive side being that my life could be worse. And that despite lacking in a major hormone that absence threatens all the organs in my body every day- I still focus on the health that I still have and the health that I work very hard every single day to try to keep.

I just typed that last sentence and literally just thought, I'm sixteen years old and I have an incurable disease, that has and will continue to teach me life lessons, on top of the ones that I have and continue to learn from my parents and those that I will generally learn as I get older. It's crazy that I'm so young and probably know more about being appreciative of life than most adults, because my life is in my own hands every day and I have to work so hard to make sure I don't drop it, unfortunately that is the reality of type one diabetes but like I always say; my life isn't all about type one diabetes and I work hard for a life that isn't affected by type one diabetes; I work hard and fight type one for a healthy life.

-Ellie




Sunday, 13 April 2014

The Diabetes "Tree Of Life" Project

Back in 2011 my consultant recommended that I attend a 'Tree of life' day. I was struggling with diabetes a lot and had no one to talk to about it, so he told me about this project that had recently started up at the hospital (UCLH) called The Tree of Life. So In August 2011 I went along and it was brilliant.

It's run by the hospital psychologists and basically it's like a support group, in the fact that you spend time with other people that have type one diabetes who attend the same diabetes clinic as you. It is all centred around this idea of you being like a tree and standing strong and basically what makes up all of your branches, your trunk, your roots etc. Your "roots" are things like your parents, where your family come from, religion, stuff like that; your "trunk" is your skills and abilities, your "leaves" are significant people in your life, your "fruits" are the gifts that you give to other people, so for example- love and friendship, and finally your "flowers" are the gifts that other people have given you, for example your parents have given you the gift of life. The other parts like the ground and towards the top of the trunk are things like your dreams and hopes for the future, and daily activities that you do and hobbies.

The aim of the day is to show young people that diabetes is not all that they are, that there is more to them than type one diabetes and they will find that diabetes actually does not come up that often whilst drawing their trees. This project really helped me to realise this and I know that it still helps young people to realise this three years on; because in February they called me and a few others back to train as 'Peer trainers'.

Peer trainers serve as an "example" to the other young people who attend future Tree of life days. We join in with the group, but not as much. Basically we help people draw their trees and we prompt discussions and help the young people gain confidence and talk to one another. On Thursday me and my diabetic friend Diaz were able to put our training into action as a couple of weeks ago they asked if we would like to go along and be peer trainers for that particular group, of course we both said yes and so on Thursday we travelled up to the UCLH to be peer trainers for the day.

We arrived at 9:30am and had a brief run through of the day, then we went over to the wall and there were pieces of paper stuck up on there- one was titled 'sport', another 'music' another was 'interests' and another one was titled 'movies' basically this activity was about finding similarities and differences in each other. For example on the sports one it was a line and one end said "I hate sports" and another "I love sports" and you just had to write your name on whatever part of the line you felt was most suited to you- I put my name in the middle because I don't hate sports, but I also don't love it. When the young people came in mine and Diaz's job was to tell them to go over to the wall and fill their names in on the paper, then we sort of all just stood back to look at it once everyone had their names filled in.

There were four young people in total, not including me and Diaz. Also on this particular day they had one of the new hospital psychologists and one of the new diabetes nurses in attendance. One of the other activities we all did was to get into alphabetical order as quick as possible; that was quite funny and it got us all talking more. We all got to drawing our trees and Diaz volunteered to present hers to the group as an example for the other young people to be able to follow, they used my tree as an example of what to draw, and Diaz was an example of what to write. So we had a short break and Diaz presented hers, after that everyone else got to writing on their trees and we helped everyone figure out what they could write and I was helping out a young girl who was really quite shy and didn't say much but I'm happy that I managed to get her smiling and talking more.

All four of them presented their trees and after each one had finished presenting, the rest of the group gave them "fruits". Basically what the fruits were was as the person was talking, we wrote down positive things about them, for example from what they were saying about their family you could tell they were a very caring person, things like that. The fruits are a really good confidence builder because these "fruits" are how you come across to other people just from talking to them, so that's something really lovely for young people to be able to realise, just how much of a great person that they really are. And I think sometimes struggles with type one diabetes can make you forget that, you begin to dwell on your struggle to manage diabetes and see yourself through type one- you think "I must be an awful person, I can't even control diabetes" and actually the Tree of life project helps you see that actually that's not true; because diabetes isn't all that you are, there is so much more to a person than diabetes.

We discussed diabetes as a "storm" and we spoke about challenges that young people with diabetes face that young people without diabetes face and that none of the challenges are our fault and just how we can overcome those challenges, that diabetes isn't our fault. It was nice to see how others coped with diabetes when they struggled. We also spoke about in the "river" that life is, at times you are swimming along nicely but you can run into obstacles like rocks and perhaps big logs, that may be harder to get past, representing diabetes and the the aim is to be able to get grounded and stand strong against the current and the only time you can do this is to get out of the water and be able to reflect on life and the way you can achieve this is to be like a tree on the side of the river. Well, I may not have done the explanation the psychologists justice but it goes something like that.

During the breaks we all got on really well and had a lot of laughs together, at one point me and this young 12 year old boy had exactly the same blood sugar at the same time: 5.1 mmols. The Tree of life takes place on the 12th floor of the UCLH in the young people's school room, and the view from up there is amazing, so that prompted a lot of conversation too. At the end of the day the other young people were given certificates and they can choose a few of the "fruits" that were given to them after their presentations to put on the "my skills and abilities include..." section of the certificate, then the next part is "my hopes and dreams for the future are..." then the last part is "I would like to thank the following people for making a special contribution in my life..." (or something like that). The certificates were presented to them in a little "awards ceremony" at the end, parents and some of the doctors and nurses off of the young people's ward came in to watch. The psychologist read out their names and what it said on the certificate, then I handed them their certificate and Diaz shook their hands; it was really sweet.

Then lastly Diaz and I were presented with certificates for being peer trainers.

I would post a photo of my tree but that was almost three years ago and I can't exactly find it. If I find it I will just edit this post and replace this sentence with a photo of my tree! 

I really like the Tree of life days and even as a peer trainer and not really joining in as much as I did back in 2011 as a participant, I still learnt and benefited from the day just as much as I did back in 2011 when I first went. I hope I have another opportunity to be a peer trainer for future Tree of life days. If I remember correctly, I think right now the UCLH is the only hospital that actually runs the Tree of life project which is pretty special; so I feel even more honoured to have gone to one of the very first sessions and to have been able to go back on Thursday almost three years later to be a peer trainer.

I'm so glad that they actually remembered me and saw enough potential in me to call me back to be a peer trainer...they told me and Diaz that we made "brilliant role models" for the young people who attended the Tree of life day so that was really nice of them, Diaz went for the first time in 2011 I think, and the girls that were at the 'peer trainers' training day both attended in 2012 I think, I suppose they will be contacted to attend a different Tree of life day in the future as me and Diaz were peer trainers at the first one this year.

I had a really great day and I know that everybody else who attended did too. Diaz is a fab person and I'm glad I got to spend the day with her as my peer training partner, we really get along. And It was amazing to spend the day with other young people who all have type one diabetes. We all totally understand each other and I think diabetes just really gives us that instant connection, but it's the ability that we all had to take our conversations beyond diabetes that made it even more special.

-Ellie



Tuesday, 8 April 2014

Dear Diabetes

Last night and this morning/today I posted a photo to Instagram, Facebook and Twitter that I had seen online; the photo was someone holding up a piece of paper that read 'Dear Diabetes'. I posted it with the caption "How would you finish this sentence?" I got a few replies and I thought I would turn them into a blog post. I view these comments on diabetes as those we wish we could say to it if it were a person; these are the thoughts that come from deep within our frustrated diabetic brains...the thoughts that hardly ever surface because we're too busy trying to keep ourselves alive to dwell on just how annoying and frustrating a life with type one diabetes is; however, most of these comments have an air of positivity about them, because no matter how great the struggle is that diabetes brings- as type one diabetics we have learnt to look for the good in our situation, whether that be being made a stronger person, or being made more aware of health. I'm going to put the comments below. Hopefully this can give non-diabetics an insight into just what goes through a diabetics head when they're asked to reflect on their disease; perhaps then non-diabetics can try to understand more just how tough it is to live with type one diabetes. You will also see that I decided to turn some of them into a drawing.




"Please F off and get out of my life. It would be much appreciated. Thanks. From your best friend, Chloe." - Chloe from Type One Teens on Facebook also known as @thattypeonediabetic 
"F you diabetes!" @sami_rr
"We have been together for ten years but we never make each other happy. I think it's time we go our separate ways. P.S You we're always a bitch." @zainalitype1
"I'm tired of you getting in the way of my sweet tooth! Sometimes a girl just wants to eat an entire pint of ice cream without worrying that it will make her feet fall off!" @katie__eliza
"I am sick and tired of you interfering with almost every aspect of my life. Go take a long walk off of a short pier." @faithfulannie
"Type one diabetes can't stop us! Keep on fighting." @ciniminnie 
"After twelve years of fighting and struggling I am asking you one more time...what are you doing to me? Can't you just make me happy for once and leave? I don't want to hurt your feelings...actually I do. I hate you, diabetes." @myrtheheida
"Bye!" -  Jacob from Type One Teens on Facebook
"I've had enough of you. I want my childhood back. It would be great if you left and stopped causing trouble with my body. I do not want to lose any of my limbs so jump in front of a bus. From your soul mate, Naomi." @thatenglishdiabetic
"Thank you for making me grateful for everyday that I live. But stop waking me up at 3am with low blood sugar." @sarahbirmingfag
"You have changed my life in more ways than I can comprehend. My outlook on everything has changed. From the people I love to the food that I eat. You taught me that not everyone takes you for who you truly are, people have thought I am contagious. You have taught me to value everyday that I wake up, because maybe one day you could be the reason that I don't. I'm a healthier person because of you and I have a drive to tell the world all about how mean you can be and how difficult you are. I spread awareness because I hope that you won't exist any more." @help_find_cure 
"Let me sleep." - Kai from Type One Teens on Facebook 
"You've made me stronger, wiser and a little bit edgy. Thank you for choosing me to prove to the world what a strong person that I am and always will be. And thank you for leading me to the realisation that awareness is my responsibility." @nosa109
"Go away diabetes!" @Mrs_Nichola_D
"Can you just give me a friggen break! You're a bas**rd, but thanks to you I have met some amazing people that I now call family, you can f*** off now...thanks" - Arrianne from Type One Teens on Facebook
"It involves a lot of swearing and finishes with an 'off'!" @mikeyw_tutu
"Please F off" - Joel from Type One Teens on Facebook
"I hate you" - Jake from Type One Teens on Facebook
"F you" - Hannah from Type One Teens on Facebook, also known as @baddiabetic 
"I'm inquiring about the possibility of a short break from your tyrant-like reign on my life. Any information regarding this subject would be greatly received. Many thanks, Josh." - Joshua from Type One Teens on Facebook
"I hate you. I want my pancreas to work again please." - Georgina from Type One Teens on Facebook
"Just go away already." - Maya from Type One Teens on Facebook
"I hate you. The end." - Jade from Type One Teens on Facebook 
"I'm writing to seek a divorce as after our honeymoon, all we seem to do is fight. Therefore, either kindly behave or get lost! Regards, me." - Sarah from Type One Teens on Facebook 
"Whilst I appreciate you giving me a good understanding of what happens to the food I've eaten, I'm not that interested to be honest." @AdrianLong3 
"You're a bast**d." - Lois from Type One Teens on Facebook
"It has been a constant fight and  I would ask that you let me break free from your reigns for at least a day. Please let me go a day without the pain and worry of your burdens. Thanks." - Alyssa from Type One Teens
"I want to thank you for the fact that because of you, I have met some incredible, brave and awesome people. I really appreciate that. Don't get me wrong, but your job is done now. Bye!" - Myrthe from Type One Teens on Facebook
"Please f*** off!" - Maya from Type One Teens on Facebook
"You have opened my eyes so that I can see all the good things in life and made me appreciate everyone and everything so much more." - Stephanie from Type One Teens on Facebook
"Please do us all a favour and go away because you are not wanted, you are a foe and not a friend, so stop acting all tough because you're not. One day you will be cured and us diabetics will win and live happy and healthier lives without you!...And stop making us get DKA because it's horrible!" @jayemcgovern
"I don't particularly like you very much." -  Jazzy from Type One Teens on Facebook
"I f***ing hate you, but thanks to you I am who I am today; a stronger girl. I've met some amazing people because of you who are also strong, and some of who who are now my best friends. Other than that I hate you. Thanks for what you've done but could you please leave now? Cheers!" - Chloe from Type One Teens on Facebook
"Why did you kill my pancreas?" - Zoe from Type One Teens on Facebook
"Where is the cure?" - Megan from Type One Teens on Facebook
"I would also like to thank you for giving me the determination and drive to better myself. Thanks to you  I have felt at a disadvantage from the word go but that has driven me to achieve so many goals! Simply to prove that I can do it even with diabetes trying to drag me down as well. You over the years have molded me into the determined, focused (possibly self destructive) fit healthy man that I am today. So thanks beta cells maybe I'm better off with out you?" - Joshua from Type One Teens on Facebook
"Can you just go?" - Mia from Type One Teens on Facebook
"I really think it's time for a break and stop stressing me out thanks! aha!" - Holly from Type One Teens on Facebook 

This is type one diabetes through the eyes of the Diabetes Online Community, hence why I left people's usernames from Twitter and Instagram. I hope these comments can show people just how much of an impact type one diabetes has on a person- some are frustrated, some are grateful to type one diabetes for teaching them some positive lessons in life and some are plain fed up with dealing with this disease. I hope that for the non-diabetics or for the people who's family members or lives have not been touched by diabetes, that seeing some of these diabetics ask for just ONE day off from dealing with diabetes, you are aware of just how stressful it is.While everyone's individual views on diabetes and it's individual impact on their lives may not be exactly the same, what is the same is everyone's drive to raise awareness and to find a cure, and what is also the same is everyone's strength that we all have to be able to deal with type one diabetes. 

-Ellie