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

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