Saturday, 17 May 2014

Life with type one diabetes in pictures

These are just some photos which basically just sum up most of the "major" events that have happened in my life with type one diabetes in the past couple of years. I started to really get into doing stuff about it  (like walks and awareness raising etc.) within a few of years after diagnosis; the first couple of years of being diagnosed was pretty much just about learning and getting my head round things! Hence why there is a big jump from 2009 to 2011. 

I'll start with the day I was diagnosed: June 21st 2009
We ran the Race For Life that day; and that evening I was in the hospital having been diagnosed as type 1 diabetic. 

June 14th 2011: The day I got my insulin pump; Maurice.
                                                                                                                                                                 
. Around August 2012 or 2011: Around when I first joined twitter I think and then not long after that I discovered the Great Britain Online Diabetes Community and just the rest of the #doc in general! 

February 2013: 2nd time being in DKA. I think it was around Feb. I've forgotten the exact dates! ha ha. (I have no photos from the first time I don't think! Which was in June 2012 I think, if I remember rightly) Both of the first two times in DKA were due to pump cannula issues.  

March 2013: When I started this blog!



March 2013: Coming across Paris on Instagram. Over a year later and she is easily my diabetic best friend! I am so thankful to have met her, I love her so much and she totally gets what I'm going through because she goes through it too. I am just so grateful that I know her. 

June 2013: Going to Parliament with Diabetes UK and doing a speech for their campaign 'Type 1 Essentials'.


September 2013: Doing the JDRF Walk To Cure Diabetes in London with my mum and auntie! 

October 2013: The 3rd time being in DKA. Not fun! Being unwell with type one diabetes doesn't really mix. 

January 2014: Taking a pump break.

February 2014: 'Kidney scare' first visit to Great Ormond Street Children's hospital to have my kidney function double checked after annual review showed protein. My kidneys are ok by the way. 





 March 2014: Type 1 Parliament with JDRF! Being co-chair and doing a speech, plus meeting some amazing people. Like Grumpy pumper a.k.a Chris, Laura, Lydia and Nathaniel. 

Early March 2014: Getting my Hba1c down to 9.7% from it being 12.5% just 6 weeks prior to that. And I also got it under 10 for the first time in literally a couple of years. 

March 2014: Being in DKA for the fourth time. This time due to sore throat and wisdom teeth infection. Like  I said being unwell with type one diabetes doesn't mix very well!


April 2014: Becoming a peer trainer for the Tree of Life Project which is basically just a diabetes support group which runs every year at the hospital. 

May 2014: Second time going to Great Ormond Street Hospital to check my kidney function, all seems to still be okay!

May 2014: Just a little glimpse into the life of a type one diabetic teenager, it's a struggle when your insulin pump tubing gets tangled in your headphones.

So that's it so far really. I just want to thank everyone like my mum, my dad, my family and my friends (both non-diabetic and diabetic!) for helping me through all of this, for all your support and for helping to make life with type one diabetes so much easier for me, because it's hard it will never truly be "easy" but the amazing people that I have in my life help to make it as "easy" as it could possibly get I suppose. I don't know how I would have coped with, or achieved a lot of the stuff in this blog post if it wasn't for you all, especially my parents- and I will never be able to put into words just how much I love my mum and dad and just how grateful I am to them for everything that they do for me, I couldn't be more grateful for them. Strangely, I am grateful to this disease, but just simply for the good things that have come about in my life due to type one diabetes, like meeting my diabetic best friend Paris, and going to Parliament twice with both JDRF and Diabetes UK, and meeting all of the amazing people that I did. Even the episodes of DKA as much as they sucked and were such an awful experience; I have come back stronger with all four and I will never stop fighting against type one diabetes. 


What makes me feel down

Before I start this blog post let me just say this; I do my best every single day to stay positive about this disease. I try my best to be strong and remember that I can't let type one diabetes get me down...and I count my lucky stars every single day that I am not living with something much worse. However, that doesn't deny the fact that this disease puts a lot of strain on me physically and emotionally, and what needs to be understood is that type one diabetes still has the potential to kill and it still is so so hard to deal with despite it not being as bad as other things. I wish I didn't have type one diabetes, I really do. But I am positive about it anyway, so I will finish on this note, when I write this blog post and tell you all my thoughts and fears about type one diabetes; remember that I know I am strong enough to deal with it all, but sometimes I just need to vent, and let it all out. I don't like talking about what I fear with type one diabetes because I think it will make me appear weak, but I know I'm not. However, this is still a big step for me to reveal it all.

I'm all for seeing the silver lining in a life with type one diabetes and how it makes me stronger etc. But before it makes me stronger I have to endure it and I obviously do not like that part. It's been almost five years since I was diagnosed and I have been hospitalised five times due to high blood sugars; including my diagnosis. That's once or more every year since being diagnosed. Being in hospital with diabetes means you're either too high or you're too low; and each time my blood sugar has been too high, I've been in diabetic ketoacidosis, close to a coma, through no fault of my own. The hospital sucks; it's boring and you go through pain with the I.V's and blood tests and you can miss important things at school and it's just all round an awful experience. And what I hate is that type one diabetes puts me at the risk of that every single day. I know it can be avoided blah blah...but sometimes things just don't work out the way you want them to with type one diabetes.

What I will move onto next is something most people would prefer to leave unspoken. In my mind it's one of the worst things that type one diabetes can do. But I'm going to say it because what's the point in having a blog if I don't speak how I feel? Low blood sugar during the night, could potentially kill me. And it scares me every single night before I go to sleep. I always make sure that I do everything that I can to keep my blood sugars from falling during the night and I set alarms to check my blood sugar when I've made changes to basal rates etc. but it still scares me and it's still a thought that lies at the back of my mind every single night. Type one diabetes has taken away what it is to go to bed at night, it's meant to be relaxing and a time for dreaming about lovely things etc. but I don't relax. I just don't. It is not like that for me. I know that it is a rare occurrence but it happens, and I've only heard of a few cases but it's a few too many, people like Nicole and whenever I see a blue candle on Facebook my heart breaks. Type one diabetes means that sometimes just falling asleep at night can be one of the scariest things in the world.

Diabetes burnout. Diabetes burnout is what occurs when you feel so fed up with type one diabetes that you don't want to deal with it any more. When I say it is 24/7, I literally mean twenty-four seven. Diabetes does not sleep, it does not stop when I go on holiday, or when I'm spending time with my family or when I'm at school, or out with my friends...it simply does not stop. I hate feeling burnt out, because there is more to it than just not wanting to deal with diabetes that day, or for a few days even, sometimes even weeks, months! Who knows! There is more to it, every high blood sugar is slowly damaging my body; and so the longer I get stuck in the vicious circle that is "diabetes burnout" my Hba1c is getting higher and higher and so is my risk of long-term complications. And it is NOT easy getting out of burnout, I have struggled a lot with not doing what I am supposed to do with my diabetes care and for a long time I lost all motivation with it; I just could not bring myself to do it. I just could not bring myself to test my blood sugar or give insulin and it was this way for a long time for me, and when I did actually test my blood sugar or give insulin I had to force myself to do it. I know you may be questioning how can she not give insulin, if it is so important to her health!? but that's the thing with being "burntout" you just lose all motivation and the sheer intensity of looking after diabetes can be come too overwhelming sometimes.

I have no cure right now. I am completely insulin-dependant and when I think of it I remember just what that means. I literally can not live without insulin. If it wasn't for insulin when I was diagnosed almost five years ago I would not be living, before insulin type one diabetes was considered a terminal disease. I know that I am living and obviously I am grateful for that but the fact that I wouldn't be able to live if it wasn't for the vials of insulin that occupy a quarter of the shelf in the fridge, I would not be here.

It's exhausting. Diabetes does not care if it is a school night or not or if I have to get up early in the morning; if my blood sugars are bad then I can be up for hours at a time. Having to eat chalky glucose tablets and a slice of bread at 2 am is not pleasant; and the chances are you're not going to be hungry at that time earlier; but when it means that it will save your life by stopping you from falling into a coma during your sleep then you just eat. And high blood sugar, stabbing a needle into your arm, stomach or leg isn't exactly pleasant either, I am on an insulin pump but if I have high blood sugar during the night then I do a correction with my insulin pen so my blood sugars correct a little bit faster. But even if I stay up during the night or not, the constant fluctuations in my blood sugar make me feel so tired, I can literally go from having very high blood sugar one minute, to having low blood sugar the next, and this is a shock to the system! Your body is not meant to have fluctuating blood sugars, but mine does unfortunately because even despite taking insulin and trying to control my blood sugars, blood sugar swings are almost inevitable just due to everything that can affect them, which is a LOT of things, probably almost everything from illness to emotions.

Jokes. Why is it so funny? Not only does someone with type one diabetes have to deal with the disease itself, but we also have to deal with the misconceptions that surround it. People use the umbrella term 'diabetes' and say it's caused by eating too much sugar etc. Well type one diabetes falls under that term and it definitely is not caused by too much sugar. Most of the general public do not understand; and I don't expect them to but I wish they tried to. I wish people wouldn't make assumptions because it's frustrating. I want to be able to say to someone "I have diabetes" and not think that they are most probably wondering if I ate too much sugar. When someone hashtags a photo of sweets with "diabetes" they don't get that they're being hurtful to someone who actually has diabetes; people with type two as well as type one because actually I think I read somewhere that 20% of type 2 diabetics are not even overweight. Both types of diabetes are serious and that is a fact that has been lost somewhere between people's ignorance and social media.

I could go on for ages about everything that makes me feel sad about type one diabetes; but then that would make all of this too negative and I don't like negativity. However, like I said earlier just because I try my best to be positive about diabetes it does not mean that it isn't serious and that it isn't the reason that some times I just want to cry, because it just gets too much. Some times I just need to rant and this blog post is effectively, a bit of a rant. I'm sure there are more things that annoy me about living with type one diabetes but I don't go on about it all the time because I know I'm stronger than type one diabetes and all the crap that it gives me. I try not to dwell on the negative stuff as much as possible because then I will lose sight of the fact that I am lucky to not have anything worse, although it sucks A LOT; and with all of the support of my family and friends, I'll be ok.

-Ellie


Saturday, 10 May 2014

Rant

It's another night that I lie here waiting for my blood sugar to come down from being high, I can't sleep with high blood sugar...too thirsty. I caught an 18.3; corrected and laid back down. I looked across at my sister and she's sleeping...I'm not. I reckon if I worked out how much sleep I get compared to her it would work out to about minus one million. My eyes are open but I can't see anything, just the silhouettes of the objects in my room and the dim screen of my blood sugar meter, as the high blood sugar reading slowly fades away until the screen turns to black. I just rolled up the blinds to let the moon in, it's almost as though the light makes me feel less alone, it breaks up the darkness. These are the nights I take the opportunity to reflect, mainly on type one diabetes and the struggles it has presented me with over the past five years; I like to be positive but sometimes I just need to let things out, I need the chance to let my deepest feelings out about this disease. Negative thoughts just clog up the system, so why not let them out?

I have fired a needle into my finger over 9,000 times. 9,000+ times blood has been drawn from my finger tips, and over 9,000 times a reading has come up on the screen of my blood sugar meter. Sometimes it is fine and other times it is not. One moment my blood sugar could be perfect and the next moment I could have very high blood sugar. It is a constant balancing act that you are not guaranteed to succeed in. There are no guarantees in a life with this disease and it is hard. I can tell you that for a fact. I am sixteen years old and my body no longer has the ability to keep me alive due to the failure of the insulin producing beta cells in my pancreas after my immune system turned on them...I am now doing that for myself with the help and support of my parents, family and friends. The fact that I take my insulin and prick my finger and take glucose tablets when I have to is the reason that I am still here after almost five years and that is my reality. I shouldn't need to do all of this, I shouldn't have to wear an insulin pump, I shouldn't know the carbohydrate content of many food items off by heart, I shouldn't need to endure high blood sugars because my body can no longer stop that from happening, I shouldn't need to do my best to avoid a low blood sugar because I am taking a medicine that is my lifeline but too much of it could kill me.

I have been in diabetic ketoacidosis four times in five years. That is four times in my life that I have been very close to falling into a coma, that is four times in my life that my blood has turned acidic, four times that my parents have had to drive me to A&E, four times that I have sat in the bathroom sobbing because the acidic state that was raging on in my blood made me feel that awful. And there isn't really any way to "sugar-coat" a situation like that because DKA is what it is. It is a moment when you realise just how much your body relies on the insulin that sits in the fridge, because anything that results in a few hours without it could kill you. Because I am insulin-dependant, every single breath that I breathe, every morning that I open my eyes depends on it and nothing but a cure can change that.

I count it as a blessing that I have not experienced a severe hypo (low blood sugar) which has resulted in loss of consciousness before. However I have had a low blood sugar in which in that moment, I was close to it. It rendered me unable to even test my blood sugar on my own, my hands were trembling so much and my vision was getting so impaired that I gave up trying and just lay there calling for my parents. They had to feed me pure sugar, something that most parents are totally against, but if it meant their child's consciousness depended on it, then I'm sure that a few minutes extra brushing that night would be a thought far from their minds. My blood sugar rose quickly and I was ok again and thankfully dinner was almost ready. But just like that I went from doing my homework, to lying on the sofa close to passing out. Like I said, it's a balancing act that you're never guaranteed to get right. Tonight I have caught a high blood sugar, but some nights I have caught a low blood sugar. Now "I won't go there", because we all know the fear that lies in the back of our minds in regards to night time low blood sugar; but let me just say, that living with type one diabetes means that sometimes just closing your eyes and falling asleep at night can be one of the scariest things in the world.

Being a type one diabetic is something that I never expected would come about in my life. For eleven, almost twelve years I lived a life that didn't know type one diabetes, but is a distant memory to me now and my life is very different from what it used to be. However looking back on the past five years has made me remember that despite type one diabetes I still have a life. Yes, it has taken up a huge proportion of my life but it is not all my life. I always say this, but it is true and I have to remember that being a type one diabetic is not all that I am; although it has helped to shape me more as a person. However that "shaping" has come from struggle and I do not like that; but I have realised that in order to let type one diabetes have that positive affect on you as a person while it tries to make all the negative ones, you need to have the right attitude to the disease. But it's hard to find it. And I can tell you that this attitude that I have developed towards it did not occur overnight, I didn't just wake up the next morning after being diagnosed and try embrace what I had just been diagnosed with,it took me time and even now I struggle to find positivity in what diabetes puts me through. I mean after all, it's not easy to embrace a life-long chronic disease that could be potentially life-threatening and poses about a gazillion health risks...

I have spent many nights staring at the ceiling just wanting to cry, some days I want to cry and scream and shake my fist, I want to question type one diabetes, I want to question why I was given this disease. Because some days it just feels so unfair. Yes, it could be worse, and in comparison to what other people have to go through I know that I haven't been dealt the worst cards in the world thank goodness, but type one diabetes is what it is. It can still threaten my life, it still requires a life of needles and finger pricking, it still evokes many different emotions, it still causes worry and fear and stress, not just for me but for those that I love too. It still makes me fear even going to sleep at night  Some days I just have no words for it all. I try to stay positive about it and be strong but some days it just kicks my butt and there is no denying it. And sometimes no matter just how hard that I try to be strong and I try to be positive, those feelings seem to be a world away at times. But miraculously in some of the moments that I have just felt so beaten down by type one diabetes I have still managed to smile.

At times I don't want the responsibility, I do not want the responsibility for my own life, but I know that I have to. I have to do it because if I don't then I would't get very far! It just seems wrong. It seems wrong that my body can't keep me alive by itself any more. It's just crazy to think about it. But to take responsibility means to accept it, and that is what I did the very first day I was diagnosed and I still do. I accepted it. I have accepted the life that I had just been so abruptly thrown into. Despite all of the struggles it has put me through and despite all of the negative emotions diabetes has evoked and despite all of the needles and the hospital admissions and the hospital appointments; I am living my life to the fullest despite type one diabetes, but it's just that sometimes you just need to have a good little rant. Tonight I just felt like I needed a moment to rant about this relentless disease that I live with 24/7. Because after all, I am awake at 1:30am dealing with a high blood sugar that I shouldn't even have to be dealing with, but like I said, I do it because I have to.

I can't just "take a break" from my ever-changing blood sugars, I can't get into bed at night without making sure that my blood sugar is okay, I can't leave the house without my diabetic supplies, I can't just start eating my food when it comes to breakfast lunch and dinner...that requires a lot of maths; working out carbohydrates, insulin dosages, correction doses etc. I can't fall asleep without glucose tablets by my bedside, I can't go on holiday without packing a bag full of supplies, I can't even go for a walk without packing a bag full of supplies.

But what I CAN do is learn not to focus on what I can't do.

Because actually, there is one big CAN and that is that I can take what diabetes has put me through and use it to raise awareness and use it to help make me a better and a stronger person. I can take something positive away from the challenge that is type one diabetes. But there is also one more can't, and this is one which I probably should focus on.  I cannot let type one diabetes break my spirits. I cannot let it win. There are many times when I have let it, I have felt so discouraged that I have let the negative aspect of this disease come over me but  I just can't let it do that, because to let it win would mean that I gave up, and that's not an option.

Ah, a life with type one diabetes is just so crazy but it's alright because I've got this, and with the love and support of my parents and family and friends then I know I can fights diabetes.

-Ellie

Monday, 5 May 2014

My very first low blood sugar

I had what I now know to be my very first blood sugar a few months before I was actually diagnosed with type one diabetes.

I don't remember the exact month but it was at some point early in the year in 2009. We were driving down to Clacton to see relatives on my dad's side of the family, and the journey is about one and a half hours. I started to feel what I thought as "really weird" towards the end of the journey- I knew that something just wasn't right. However, I didn't think much of it because I had no reason to; I put it down to sitting in the car for so long that I felt so weak. When I got out of the car my legs felt like jelly and I could honestly just about walk so when we got inside I sat down the whole time hoping whatever I was feeling would just go away.

All I can say is thank goodness it was lunch time, because if I hadn't eaten something quickly that day then I most probably would have passed out. I felt so hungry and ate very fast, immediately I began to feel better again and the feeling went away. My body knew my blood sugar was low; however I didn't- and this incredible urge to eat was so strong, my body was screaming "feed me or you'll pass out!" Yet I was unaware; I was unaware of the diagnosis that was to come a few months later, I was unaware of the battle that was raging on inside my body.

I find it mad how my body even developed a low blood sugar with what was to come- the eventual failure of the insulin-producing beta-cells in my pancreas. I wonder if at this point the auto-immune attack had begun, or if it hadn't started at all? I really don't know, but what I do know is that I had not been diagnosed as a type 1 diabetic at the time, nor had the words "type 1 diabetes" even been spoken to me before. This occurred at a time that I think, my body appeared to be "fine", I can't remember if I even had any symptoms of type 1 by this point either. What I now know to be my first low blood sugar was an unnerving experience for me; I had no idea what was going on with my body and I just tried my best to carry on as normal despite the symptoms that I was experiencing that day and despite being quite concerned I didn't think much of it after the event had passed. I went back to being normal, however it didn't last long.

Shortly after that day the symptoms of type 1 diabetes would become even more prevalent, the auto-immune response would be in full attack against my pancreas and there would be nothing I could do to stop it, yet I had no idea. The symptoms of a low blood sugar would not come back until the day after I was diagnosed; sitting in my hospital bed the nurse tested my blood sugars and they came back at a perfect 5.5 mmol.

Although it was nearly five years ago I still remember this moment very clearly; I suppose because it was the moment that it truly hit me...I realised the effectiveness of the insulin, and I realised just how much my blood sugars had come down, I was experiencing something other than thirst and lethargy for the first time in a long time.

I was sitting at the end of the bed; I felt very shaky and weak but I did my best to ignore it and carry on with whatever I was doing; I didn't want to mention it because once again, I thought nothing of it. However, my mind was racing with thoughts, an 11 year old me sat at the end of her bed wondering what on earth was going on with her body. The nurse looked at me and I suppose I just couldn't hide the look of concern on my face and she said to me "Hold out your hands?" and so I put them out in front of me, barely managing to keep them up. And my hands were shaking, they were trembling.

The nurse explained to me this was normal and what I was experiencing were actually the symptoms of a low blood sugar, I know I wasn't low at 5.5 but this was low for my body at this time. My blood sugar was 45 at diagnosis the day before and so a 5.5 was probably a bit of a shock to the system; having been accustomed to high blood sugars for so long. It's bizarre but it's just what happens, because 5 mmol of sugar in the blood isn't much to a body that was used to having 20+.

Even now I still experience this, if my blood sugars have been high for a little while, once my blood sugars get down to a normal range again I experience the symptoms of a low blood sugar, and/or the first low blood sugar that I have after being high for a long time is worse than it would be if my blood sugars had been in good control prior to it.

Obviously in five years I have experienced many many low blood sugars; and although they were scary and unfamiliar to me at first- unfortunately they have become a part of my everyday life now. I know what it feels like to experience a low blood sugar as a non-diabetic and so to think that I have almost become "used" to the feeling is very strange to think about. That first time that I experienced low blood sugar whilst in Clacton is a time that I will never forget, just because of how unnerving that it was; and if anyone asked me back then if I could ever get used to that, or if I could handle experiencing those symptoms again I would have said no. I had no clue that I would experience what I now know to be low blood sugar even just once again, let alone as many times as I have done and will continue to, until there is a cure for type one diabetes and my life will no longer depend on insulin.

-Ellie