Saturday, 1 November 2014

November is Diabetes Awareness Month

It's Diabetes Awareness month!

1 in 600 young people in England have type 1 diabetes. On June 21st 2009 I became one of them, I was 11 years old, nearly 12, I'm 17 now and in my 5th year of living with type 1 diabetes.

What people aren't aware of is how it happens, and it's symptoms and just serious it is. Type 1 diabetes is an autoimmune disease in which the pancreas attacks the insulin producing beta cells in the pancreas. My pancreas does not produce insulin. Everybody needs insulin to live. It regulates the amount of sugar in our blood by allowing energy from the food we eat into the cells to be used by the body...which is why  I'm attached to an insulin pump 24/7, it gives me insulin via a cannula under my skin. If I didn't have insulin via a pump or injections then I would die because I would have zero insulin in my body and the amount of sugar in my blood would rise to dangerous levels, causing my blood to turn acidic and if left untreated without insulin, this condition, otherwise known as diabetic ketoacidosis, is fatal.

Trying to keep my blood sugar at a safe level is a 24/7 job. I don't get to take a break. Too little insulin and my blood sugar will go high, too much insulin and my blood sugar will go low. That's why I also have to prick my finger 4+ times a day so  I can see what level my blood sugar is at. High blood sugar makes me feel thirsty and tired and is treated with more insulin, low blood sugar makes me feel shaky and weak and left untreated with glucose can also result in a coma or death. Overtime diabetes can lead to complications like blindness, kidney failure, nerve damage, amputation and more. It is not impossible to control blood sugar, but it is hard- it's not just food that can affect my blood sugar, it can fluctuate due to the weather, stress, illness and even emotions. A simple cold or flu can send my blood sugars very high despite lots of insulin and sometimes this can result in a trip to hospital.

I've been hospitalised about six times since being diagnosed with type 1 diabetes. 5 times out of 6 were due to being in diabetic ketoacidosis (DKA for short), the condition that I mentioned earlier. Two of these times were due to being unwell and the other three were due to my insulin pump cannula coming out during the night and I didn't realise, and so I got no insulin for hours, resulting in the build up of toxins in my blood called ketones, which make my blood turn acidic. If this is left untreated it is fatal. And then this summer I spent two weeks at UCLH getting my insulin doses re-calculated and getting help to get back in control of my diabetes.

People don't understand how serious type 1 diabetes is and just how much of a 24/7 job it is. So that's why I've written this long blog post! To make people aware. But what I also want to make people aware of is that yes, I struggle with this disease a lot of the time and yes, I have my down days...but I am okay. And  I know how to enjoy my life and I am grateful for what I have got. I haven't got time to waste being depressed about being type 1 diabetic, or wondering why I have to deal with this. Instead I've tried to get something positive out of it, I've tried to use it to help others and raise awareness. The opportunities that I have been given from having type 1 diabetes are more than I could have ever imagined and so unexpected- I'm glad that  I have had positive things to focus on, like being co-chair of JDRF's 2014 Type 1 Parliament in March, doing a speech at JDRF's charity gala in London in June this year, having this blog that has over 35,000 views, going to Parliament with Diabetes UK in June last year and doing a speech there too, and getting to know some amazing people.

That's not to say that I don't ever get upset about having type 1 diabetes, or want to give up...and there are days when I just want to cry about it because it can make me feel so rubbish, and some nights I'm afraid to fall asleep for fear of a low blood sugar during the night...The reality is that despite how positive I can be about it, it's still a huge weight on mine and my parent's shoulders, and to have that lifted off of our shoulders would be a huge sigh of relief. To help me through it I have amazing parents who support me so much, along with the rest of my family and friends.

Life with type one diabetes is a tough journey and definitely has it's highs and lows (excuse the pun!) but it is as my blog title says...bittersweet.

So, every November (and every month actually!!) be aware of type 1 diabetes and it's symptoms (thirst, tiredness, weight loss and going to the toilet a lot), be aware that even type 2 diabetes isn't always caused by a bad diet, be aware of the parents who work super hard every single day to look after their type 1 kids, be aware of the charities like JDRF who are trying to find the cure, and be aware of the thousands of kids, teenagers and adults who are out there living with type 1 diabetes like me. All doing our best to raise awareness, all fighting through the tough days and still smiling, and all wanting to remind people of one more major thing: No! We did not get it from eating too much sugar.

Some photos:

Love how gross I look in this photo! Not!
Hospital with DKA 
JDRF Walk to cure diabetes last year 
JDRF's Type 1 Parliament in March 2014
Me with my mum and local MP Nick De Bois
Another time that I was in DKA 
My insulin pump
Speech in Pariament with Diabetes UK in June last year
And me! 







Wednesday, 15 October 2014

Infusion site

For as long as I can remember I've put my infusion set in my stomach. I could never bring myself to put it anywhere else. It's the most comfortable place for me and it doesn't hurt at all, unless I hit a nerve...then it hurts. I've been so used to doing it in my stomach that I totally forgot about the rule of rotating sites until every time I tried to do a bolus my cannula would sting a lot, so I decided it was probably a good idea to give in and rotate sites. I know that's bad diabetic etiquette to not rotate sites! But when you're apprehensive to put it anywhere else it's a bit hard.

Site change day rolled around and I pulled the cannula out of my stomach for what would be the last time in a little while. I'm giving my stomach a break, it's got so many little marks from infusion sets. I'll just go mark another part of my body with needles. The chosen place was my hip, but more round towards the fattier bit at the back. This was probably the longest amount of time that I have taken to insert a cannula, second to the very first time I ever did it. I sat for a long time...contemplating my decision..."will this hurt?" "have I put it in the right place?" "Can I even insert it here?" I knew all of the answers in my head, but my brain wouldn't comprehend them and I just couldn't bring myself to fire in the needle. I think it was the first time that I actually said I was scared. I was scared to put my cannula there and I'm not afraid to admit it. So I asked my mum for help, and she re-assured me lots of times that it was in the right place. So I did it, and you know what? It didn't even hurt. I was just so apprehensive about it and nervous to get out of my old ways of inserting it into my stomach. The next morning I totally forgot that I had even changed sites and couldn't feel it one bit.

I had no choice but to do something that instilled such apprehension in me, there was no way that I wasn't going to have to fire that needle into my stomach whether I liked it or not. And that's unfair to me in my head, why did I have to go through such emotion and insert a needle into my skin? Because I'm type 1 diabetic. Nothing will change it and for the rest of my life I will continue to put needles into my skin over and over again and no matter how scared I am, I have to do it anyway. Bravery isn't being unafraid, it's doing something even if you're scared. Some would call me brave, but to me I'm doing what I have to do to stay alive. I realise that I found courage to move my infusion site to a different place and yes, it's not a major thing but it's unsettling when you find yourself at a time of fear in the face of something you have done hundreds of times before. I suppose it was fear of the unknown, I was getting myself out of old habits. I know what it feels like when the needle goes in, I know what it feels like if I hit a nerve, but only when it's in my stomach...anywhere else was a mystery to me.

I'm glad I did it. I got over a hurdle that I had been reluctant to jump over for a very long time. I don't feel silly for being nervous to do it. I think it just re-instates the fact that you can never really, truly, get used to needles- no matter how often you've been stabbed with them. It's something that is still so alien to a person whether they're diabetic or not, and it's a reminder that we're not immune to pain, or the fear of needles- I still find myself in times where I'm afraid to fire the needle in- and it's natural, it's natural human instinct. I'm not afraid of needles, I was more-so just fearful of putting it in a different place. And that's what was so unsettling for me I suppose!

-Ellie

Wednesday, 17 September 2014

Ramble

I'm slacking with my blog, and I always say that it's because I have nothing to write about yet I live with this disease 24/7...there's almost always something to write about; but the question is if I remember to do it or not. Today marks three weeks being back at sixth form, and I'm already feeling overwhelmed by it all, by exams and re-marks, and re-sits and whether or not we'll get our final grades next year. And if you asked me how I'm feeling I'll tell you I'm tired, because I am, and it's sixth form and it's diabetes, and dumb hormones that don't do their job properly.


There's nothing of any significance going on with diabetes, I try my best, I get up everyday and go through the same routine as the day before, and the day before that...the whole thing became monotonous a long time ago; but my attitude to it changes everyday. One day I'll feel determined and the next I'll feel like it's all too much...but it can never be too much; because at the end of the day I don't have a choice whether it feels like too much or not. I recently found out that Elsa from Frozen was inspired by the executive producer's son...who is a type 1 diabetic, it made me smile and it made me feel proud to be diabetic. For a film with characters that had such an impact on people's lives to be ever so slightly affiliated with type one diabetes makes me smile, it's such a positive. I agreed to seeing the psychologist at the hospital- I spoke a lot about how I'm feeling in clinic back in August- it felt good to have everything out in the open and to know that my consultant understands. I'm happy with myself for agreeing. The problem I had for such a long time was that seeing a psychologist meant talking about yourself, about how you feel about things, and I just remember thinking "I don't even know how I feel, how can I tell someone else about it?" But it seems clearer in my head now. I feel like I'm at a point where seeing the psychologists can benefit me the most. What happens with me at the moment is I let myself get discouraged by high blood sugars, it's mainly when I know that the high blood sugar is my fault because then I don't want to test again because I don't want to know what the reading is because I know it will be high...it's a bit of a vicious circle and I think I just need to know how to have a different attitude to it and how to find motivation to fix my blood sugar when it's not right, instead of choosing the easier option and running away from it.


But I am determined though, I'm determined to get to a point in my life with diabetes where I wake up and the first thing that comes naturally to me is to check my blood sugar (I'm actually quite good at testing in the morning and they pleasantly surprise me most of the time) or for the first thing I think about before eating is to give myself insulin. Saying that, I'm definitely not as bad as I used to be and I have had major breakthroughs in blousing and testing my blood sugar but I'm still not that good at keeping it up. I don't know maybe I strive for too much, perhaps I expect myself to be perfect at looking after diabetes or something- but that's never possible, you can never be a "perfect diabetic". I look at the people I know who have brilliant HbA1c's and I considered them a perfect diabetic, but I have to remember they have their struggles with high and low blood sugars too, but it's how they let it affect them that matters.


On that note, it's not even really related to any of what I'm talking about but I thought I would say it before I forget it. I'm back at school now and everyone is comparing grades, and sometimes I look at HbA1c's in terms of grades; for example a 5 or 6 A1c is like an A* and then a 7 is a B and so on...and when diabetics compare HbA1c's it feels like comparing school grades sometimes. I get annoyed with the people who aren't happy with a low A or a high B at school, and that's how I feel about people who are unhappy with an A1c on the higher end of 6 or 7 and they want it to be better. I get annoyed because I didn't get any A's in my exams, I actually didn't do that well apart from a B in media- and I don't have an A1c of 6 or 7, in fact mine has been over 10 for as long as I can remember. If I had an A1c of 7 I would be over the moon; and then that brings me to remember that everyone has a different circumstance and so for me an A1c of 7 would be amazing because I haven't had one under 10 for a very long time, but for someone who always has A1c's at the lower end of 6, a 7 is disappointing to them.


I have no idea why I felt the need to ramble on and say that but I like to get things off my chest and most of the time that's either talking about it or writing about it. I feel like I ramble a lot when I blog, that's probably because I find writing down how I'm feeling so therapeutic and it actually helps me think things through; for example when I was talking about how I feel earlier- I managed to make sense of it by writing it down and the possible solutions I may or may not have mentioned have come from my head whilst writing, so what I'm saying is that I don't really pre-meditate what I'm going to blog, I just have one idea in my head and let things stem from there.


Anyway, that's pretty much all that I have to say for now. I'm actually at school right now, it's my free periods so it's okay...I have to finish off reading the rest of Wuthering Heights though, so I'm going to go and do that.


-Ellie

Thursday, 11 September 2014

Happy Birthday mummy!

Happy birthday to you, mum!

You are my absolute world. You are the strongest person that I know, you have a heart of gold and people can't help but love you! I don't know what I would do without you, as well as my mum you're my best friend, my motivation, my inspiration! You mean so much to me; when you're sad, I'm sad, when you're happy, I'm happy! I am so proud to call you my mum, and I am so grateful that you're mine.

Thank you for everything that you do for me, and for the support you give me. You keep me going! Thank you for being my biggest source of support and comfort. I know you're going through a rough time at the moment; and I would do anything to take it away from you. Your positivity and determination through it all inspires me. You help me to stay positive with my diabetes and you teach me to be thankful for the health that I have. I know my diabetes causes you worry and stress, and it's been the reason you and dad have had to jump out of bed at 1am to drive me to the hospital, it's been the reason for your sleepless nights and I know it's been the reason for some of your tears and more...despite it being tough on you as well as me you still help me to see the light in the dark; you help me to understand that I can do great things even with type 1 diabetes and you show me how to embrace it. As well as having to take care of all the regular mum stuff, you're also a type 1 mum- which makes you extra special!

But obviously there's more to you than just helping me with my diabetes- as well as a type 1 mum you have to deal with all the other stuff that comes with being a mum! Like cooking for us all (Your cooking is the best) and cleaning etc...and I know that I can be lazy and a moody teenager at times and I don't help as much as I should, and that makes you upset; but I never mean to make you upset and I'm always really sorry after you've been angry with me, and it makes me sad when you're sad; so know that even when I'm being a brat I don't want you to be upset because you are everything to me! I will try harder to help you more and stop being so lazy because I love you!

Mummy, you are clever and you're kind and you're amazing! You are caring and friendly and you light up my world! You are the most important person in my life; you are my life! So once more, HAPPY HAPPY BIRTHDAY! I love you so much and actually words can't really describe how much I love you, but as said in the book- "Guess How Much I Love You" which I know you know is the book we used to read together when Lauren and I were little-
"I love you right up to the moon...and back" and more!



                                          









                       



Tuesday, 26 August 2014

Hope

The sky on a sunny day is something I find great joy in looking at. I could watch it for hours, I love watching the clouds go by, spotting birds fly over, and seeing trees flutter in the wind in the corner of my eye. I enjoy the smell in the air too, it smells fresh and it just makes me feel so relaxed. In looking at the sky I have no other thoughts than how beautiful it is, how fascinating it is as a part of this great big world and what doesn't exist in my thoughts while I watch the birds and aeroplanes fly above me, is diabetes. I realise that the beauty in this world has the ability to push diabetes out of my mind, even if it's just for a moment and that tells me something. I remember, even on my darkest days with diabetes, that there is more to life than type one diabetes, my life is not consumed by this disease no matter how much I struggle with it. The sky shows me just how big the world I live in is, and just how much that diabetes shouldn't stand in my way and in it's simplicity I can try to imagine a world without diabetes and it gives me hope...hope that one day I will be looking at the sky and diabetes will be in my thoughts, but as a distant memory.

Overwhelming

Without sounding too negative, I can't help but think sometimes of how overwhelming a life with type one diabetes can be. It is constant, it is 24/7 and sometimes quite intensely so. In the midst of my struggles with type one, I've been trying to figure out ways to get myself back on track, and the planned admission, so far, has been one of the only things that have actually worked, and lasted for longer than about a week. It gave me a sense of routine, it reminded me of what it means to be in control over my diabetes and being back in control has reminded me of the intense amount of effort that goes into staying healthy as a type one diabetic. I am not saying this as a means to fall out of routine again, because that's not what's happening...I'm just merely reflecting on all that it is to live a life with type one. I'm 17 years old, I shouldn't be worrying about any of this, but I am, and the fact that I cannot live without the vials of insulin in the fridge is a scary thought sometimes. My body does not have the ability to sustain life on it's own, and if I did not have my insulin pump or insulin injections I would not be here. But even insulin is a hazard to some extent, if I take too much my body goes spiralling into low blood sugar, too little and it goes the opposite way. The word 'caution' springs to mind, I have to have my eyes open to the effects of this disease 24/7, I have to keep watch on my blood sugars, on how much carbohydrate I'm eating, how I'm feeling, everything- or I would get unwell. That is why I cannot have a break. That is why routine with type one diabetes is so intense. That is why it overwhelms me when I think about it.

It's not just the routine that overwhelms me though. It's also the possibility of what this disease can do to my body. I'll tell you what I am most afraid of out of all the possible complications...blindness. I know if I say it people would probably think "don't be negative" or "that won't happen to you" or "just look after it and you'll be fine" but it's hard to "just" look after it no matter how afraid I am of what could happen if I don't, and I'm not going to paint a pretty picture of flowers and positivity because sometimes it just isn't that, sometimes it's hard to see the light no matter how hard you try. It's the scariest one for me because to see everyone around me, and the sky and the trees and the sun when it shines is a privilege...I take great joy in seeing the world around me and to think that type one diabetes has the possibility to take that away from me is something I can't quite fathom, because on one hand I have hope it will never happen, but on the other hand I am very aware that it could. I am afraid, but for some reason that has never been enough to kick start my motivation to get back into control again. However, what is important is that I'm getting back into control and to look ahead to a positive future with type one is the way to go, although I have the right to rant when I want to!

Everyday I am reminded that what I live with is not to be downplayed, the potential type one diabetes has is not to be brushed aside. I am living with a disease that works so hard against me. But the fact that I still smile despite type one tells me that I'm winning to some extent, even if I'm not fully back in control of it yet, but I've worked pretty damn hard to get to where I am with it. So I'll keep pushing on because I have so much love and support around me, and the drive to do this, because I know that I can, no matter how overwhelming it gets sometimes.

Sunday, 17 August 2014

Planned admission: overview

On July 21st I was admitted to hospital for 2 weeks. I totally fell out of routine with my diabetes, I didn't test my blood sugar very much and bolusing for food was a rarity. The most I did was change my infusion site, and when I was done I would prime it with a large amount of insulin and then continue with my day, it was unlikely that I would touch my insulin pump again that day- except for the odd bolus here and there. I relied very much on my basal rates to keep my blood sugar under some sort of control. I wouldn't say I was depressed or in denial about diabetes, I just found it easier to ignore it...being in hospital reminded me of all the feelings and the thoughts that looking after diabetes entailed and as I think back I reckon I just didn't want them. But not in an "in denial" way, just a "I don't really want to deal with this" I don't know how to explain it, I gave up to a certain extent. I had let diabetes go so much that even when I tried to correct my blood sugars it wouldn't work so I didn't try anymore, then I didn't want to test my blood sugars because I knew that they would be high, and so my body got used to high blood sugars and I continued living in a state of high blood sugar and I could find no motivation to fix it. I have lost motivation many times before and somehow managed to pick myself back up and bring myself back from the brink of a HbA1c any higher than 12; but they were short lived. They were mini bursts of motivation that I couldn't find the  ability to keep up. But with a HbA1c of over 14% it soon became clear to me that I wasn't going to be able to turn this one around on my own, despite all the support I got from my parents, family and friends I just couldn't do it, I wanted to be able to do it but I couldn't.

Admitting to needing help was a really big thing for me, I thought that if I admitted that I needed help and couldn't do this then I would look weak, I thought that it would defy everything that I have ever said about diabetes, that I would never let it get me down, and that I know I can do it, but I figured out that actually for a little while, I actually couldn't do it. Afterwards I realised that admitting to needing help was the stronger thing to do, I reminded myself that to run away and hide from my struggles with diabetes is more cowardly than saying that I can't do it. So when my consultant mentioned the admission I spoke to my parents and we all agreed that it could help me, so I went ahead with it, I decided it was time to actually do something about it because this time around I couldn't pick myself up, as much as I wanted to, I needed help that went beyond the support from my parents, family and friends, as valuable as it is.

The admission is planned and it consists of four stages. I'll give you a run down of the stages now so I don't have to get into too much detail about it later. On stage 1 you're put on an insulin drip for 48-72 hours and your blood sugar is tested every hour, the drip is a machine called a 'sliding scale' and so they entered in my basal rates into the sliding scale and when I ate they doubled the rate. This helped them figure out how much insulin I need and figure out new basal rates, so that on stage 2 they can enter them into my insulin pump and see if they work. On stage 2 I was put back onto my insulin pump, but the nurses did everything for me, so they bolused for me when I ate and for corrections, and the blood sugar checks were every couple of hours. Having the nurses do everything for the first two stages was so I could have a break from diabetes, so then the last two stages were about slowly getting me back into control of my diabetes. Stage 3 was I did boluses and corrections for myself  but with supervision from the nurses, they still had to do my blood sugar checks because it's "hospital rules" or something, that whilst you're in hospital they have to use their own blood meter. Then stage four was me doing everything on my own and the nurses didn't have to watch over what I was doing, all they had to do was write down how much insulin my pump had given me, the insulin that was active in my pump, if any, and how many carbohydrates I'm eating when I ate. Stage four also meant that I could go out off of the ward, I could during stage 3 too. But in stage four I could actually go home for a couple of days.

Each stage brought a new scenario, everyday was different for my blood sugars and my team realised
that my insulin requirements actually change everyday. Some days I need more insulin than on other days. Even though at times during my stay I thought the boredom was going to kill me, there were
some eventful moments.

The day I was admitted was Monday 21st July, I went up to the hospital with my twin sister and our friend, Eleanor because my parents were working and so they couldn't come. The nurses were waiting for someone to be discharged from the main ward when I arrived and so I was put in the daycare ward for what I thought would only be a couple of hours but it ended up being for the whole day and  night and for most of the next day. I had quite a peaceful time there though because the people who came onto that part of the ward were only there for a couple of hours for infusions and so they went home and at night it was just me on the ward. It felt a bit lonely at first but it was okay, the fact that i had a bed by the window kept me sane because the view of  London at night from the 12th floor was  incredible. On Monday night I was awoken at 4am by the nurse because I had somehow managed to pull my cannula out while I was sleeping, and so I had to have a new one put in, which wasn't ideal at 4am. I didn't sleep very well at all the first night especially.

On Tuesday morning I saw my consultant and we just talked about how things were going. That same day I was moved from the daycare ward to the main ward, but before I was moved some volunteers were coming round. They had purple tops on that said "fun team" on the front with rainbow! They just came round to have a chat really, we spoke for a good while until it was time for me to be moved to the main ward. Earlier on that day my mum and sister also came to visit so that was great to have some company. There were three other girls on the bay with me, all in for different things, I got speaking to the girl who was opposite me and we actually ended up having a really good laugh together, we would go and make tea in the evenings and once we went out for a walk to get some fresh air, and one night we stayed awake chatting until about 1:30am. She went home just less than a week before me and so I got very bored when she left but we exchanged Instagram usernames and are still chatting now, more than 2 weeks later.

Wednesday rolled around and in the morning I went to have a shower and it was absolutely freezing!
I had to rush anyway because I could only be disconnected from the drip for half an hour but still, it was so cold! But thankfully the freezing water was just a one off, the showers that followed after
were okay, the water temperature behaved itself. It felt great to be disconnected from the drip even if

it was just for half an hour. My twin sister, Lauren and my friend Eleanor came to visit on Wednesday, we had a laugh about photos of each other's faces that were edited to look distorted and it looked hilarious, then we went to the rec room to play the Nintendo and we made some loom bands! That evening I was disconnected from the drip and put back onto my pump and it felt so good to be free from the drip, no more feeling restricted from the cannula or having to drag the pole around with me wherever I went. On Thursday morning I saw my consultant again, and I was officially on stage 2 of my admission and the cannula could be fully removed.  My mum came to visit me too and we made cakes in the rec room!

Saturday. My mum, dad and sister all came to see me that evening- not much had really gone on during the day on friday if I remember rightly, so it was lovely to see my family not just because I was bored and wanted their company but because I missed my parents and missed being at home with them. On Saturday morning the youth worker brought her little dog in! It was so cute and calm. I can't remember what day it was, it may have been before Saturday or after...but one night during stage 2 was quite...eventful. We put it down to cannula issues but for some reason my blood sugar didn't want to come down that night, they shot right up into the 20's and they didn't want to budge. I changed my cannula and the nurses said if my blood sugars don't come down then they would have to use the syringe to correct my blood sugars, so at about 3am I was woken up so they could do a syringe injection, it kind of hurt a little bit but being half asleep I didn't really care too much, then at some point around 4am I had to have another injection if insulin because my blood sugars still didn't budge. It was crazy because I was having all that insulin from my pump, plus two syringe injections and my blood sugars just weren't coming down. The next morning we were on hypo watch because I
had so much insulin during the night and they were concerned it would catch up on me during the day! It didn't.

Not much happened on Sunday through Monday...On Tuesday I saw my consultant again and was
officially on stage 3! That meant I could do everything on my pump for myself now, whereas before
the nurses would have to bolus for me on my pump. I really liked being back in control of my pump and by this point I could really feel my sense of routine coming back, I knew my blood sugar was being tested every two hours and actually expected it and went to get the nurse when it was time to test my blood sugars and she wasn't around to do it. On Tuesday evening my uncle came to visit me, and because I was on stage three I was allowed off of the ward in between meal times so he took me out for a walk and we had tea at pret! It was depressing having to go back to the ward and I was really fed up by then but I had to keep reminding myself that what I'm doing is for the best and I just had to keep pushing on because it was all worth it in the end. On the days that I felt especially down I said to myself "down but not out". That Wednesday wasn't very eventful either, apart from young peoples group that was going on in the rec room and we played jenga. On Thursday I took part in the tree of life project again, it was on the 12th floor of the hospital anyway so it was quite handy, I just had to walk down the corridor! I saw my consultant too, and was officially on stage 4! It was exciting it finally be able to be in control of my own diabetes again and I definitely felt ready to do it all on my own again. On Friday evening my friend Chris came to see me and we played with the youth workers' other puppy in the rec room and we also went for a walk.

Saturday morning, the 2nd of August, I got to go home! A lot of people said to me when I told them I was being admitted, about how I won't be in my natural settings and stuff and how that would probably impact it, but the point of stage 4 was so you can see how you get on back at home and see if you can keep up the routine. I went back to the hospital on Monday morning and because the weekend went so well they didn't have to change anything and so I could go back home! I had to go back on Wednesday morning for a review and to be discharged but then I was free from the hospital! I completed all four stages in 2 weeks and I'm feeling proud of myself. On Wednesday 6th august I was officials discharged and it felt great.

The admission was tough emotionally and physically and there was a lot of tweaking of my basal rates and lots of blood sugar checking but it was all worth it. At times I wanted to leave, I wanted to go back to how things were before because before I didn't experience so much frustration, but I knew I had to keep pushing on. I had two low blood sugars during the time that I was there, one during stage one and one during stage three, the first hypo definitely felt worse than the second one because it was the first hypo I had in a long time. It was an eventful admission at times and I missed my parents and family and just wanted to go home but I'm glad I did it. I'm glad I agreed to do it because if I didn't I reckon I would still be living with blood sugars over 15 24/7 and that's not a good way to be, it feels good to be back in control and to have a sense of routine.

I go to clinic on the 21st and I hope I can continue staying in control.

P.s I may or may not have got the days muddled up but that's because I can't remember some of three days that certain things happened on, it's been about eleven days since being discharged. I didn't mention everything either I just wrote this as a mini summary of my stay. My basal rates work really well now too by the way!

-Ellie


Wednesday, 30 July 2014

Stage 3

(I totally forgot to post this on the day that I wrote it! So here is a little summary of stage 3- when I was actually doing it. I need to write a blog post about my overall experience, so I will do that in a minute)

Today is Wednesday. I'm surprised I can even keep up with the days being in here- sometimes it feels like all the days just merge together. Yesterday I moved onto stage 3 of my admission. Stage 3 means that I can do things by myself but with supervision from the nurses; I'm also allowed to leave the hospital in-between meals, but that also has to be supervised by someone else like a relative.

Yesterday evening my uncle visited and so he took me out after I ate my dinner; which was really nice because I hadn't been outside in a while! It felt so lovely to get some fresh air and it was a sunny evening so that made it even better. We walked down the road and just sat outside Pret A Manger and had some tea; it was so good to be around people other than patients and nurses, to hear noises other than patient buzzers and beeping machines, to smell nice food and not hospital food. Being stuck in here has actually made me appreciate things like that so much more; it's the little things. Just being outside has become such a huge thing for me, it wasn't before; but it is at the moment- while I'm cooped up in here, being outside is something that makes my day right now, it may not be a big thing to someone else, but to me, right now, it's a big thing! We were out for about an hour and a half and it was depressing when I had to come back to the ward, but I'm the type of person who likes to "live in the moment" and so I didn't let the thought of having to come back here ruin the time that I was spending away from the hospital, I just enjoyed it for what it was.

Today I had my first low blood sugar, and even though it made me feel bad, I was so happy to see numbers that were single figures. I never thought I would ever appreciate a low blood sugar, but I did and when I saw that low number I actually thought "finally!" finally my blood sugars were something other than high, I had to correct it with juice and not extra insulin and it felt...good? Obviously low blood sugars are awful and I really don't like them but I was relieved to see it because lately I've been constantly high and I got to the point where whenever I've been having my blood sugar checked I've been expecting to see an 11 or higher. So to finally see single figures was great. My waking blood sugars were actually 5.8 but sure enough after breakfast they were 10.4; and I just thought "oh great" they're probably going to be stubborn again now, but to see that something was actually doing it's job is good! I know to be low isn't "good" but it's the fact that my blood sugars responded to the insulin by going down...they went down and not up. So I was happy to see it. But obviously I don't want to be low all the time so don't get any ideas, diabetes!

I'm getting there though, hopefully stage 4 will commence soon and I'll be able to get out of here and hopefully I will leave the hospital feeling more in control of my diabetes.


Saturday, 26 July 2014

Planned admission: thoughts

I feel bad because I've been totally neglecting my blog. I think it's time to write a post. 

I have been in hospital since Monday, I'm here for a planned admission to help me get back on track with my diabetes and I can't tell you just how bored I am. Actually it's an understatement to say I'm bored. The admission is in four stages and currently I'm on stage 2.

From Monday morning until Wednesday evening I was on a sliding scale and the rate on it was doubled when I ate. The sliding scale helped my consultant work out how much insulin I need so my basal rates could be recalculated. Then on Wednesday evening the new basal rates were set up on my pump and so since then it has been a case of monitoring my blood sugars to see how my blood sugars react to the new basal rates. 

They're being a little bit stubborn right now and are running slightly high, around 10-13 quite a lot, but that's hardly anything compared to what my blood sugars were before coming into hospital. Things are being tweaked as we go along and I should be on stage 3 soon. 

I've been thinking about it and I feel like this is quite hard emotionally? Number one because I want to be at home because I miss being around my parents and family and I'm bored, secondly when I didn't look after my diabetes there was no effort required and it wasn't so much hard work and it wasn't a huge thing to me. Now that it is being looked after and things are being tweaked I am reminded how much it takes to get things right with diabetes, and I don't like that, I don't like the frustration that comes with it all and the wondering why your blood sugars have behaved that way etc. and I know things will be tweaked and my blood sugars will go down to normal eventually but at the moment while they're running a little high and not quite getting into the normal range it makes me want to give up, and go back to not bothering because then it doesn't bother me. 

I suppose those thoughts have only surfaced to me now, I think perhaps I maybe shut diabetes out for such a long time because one of the reasons was I just didn't want it and all the emotion that it comes along with to exist to me. Now they do, and the frustration towards diabetes is here and I want to go back to cutting it off- but that isn't wise, and it's not the right thing to do. The idea of getting back into control does exite me though and I look forward to the time when my diabetes will be routine to me again and hopefully that time will come before I leave the hospital. 

I'm feeling positive about it though. I know I just have to keep an open mind about it and keep pushing forward because it will all be totally worth it in the end. I have to remind myself that what I'm doing here is for the best and negativity shouldn't be in my mind. I'll learn to deal with the frustrations and all the emotions diabetes brings- and I think I'll take the short-lived frustrations of temporary bad blood sugars over the permanent feelings of hopelessness and wanting to give up. I think I should look at frustration as a good thing, as in... I care, I want things to be better now, and I'm done living with constant high blood sugars and all that they entail. 

I want to feel a low blood sugar again. I want my body to remember what it feels like to not be constantly high, my blood needs a break! It's been over five years now and what I never anticipated when I was diagnosed was just how much it would affect me emotionally and looking back I took it all in my stride so so much and even after being diagnosed I don't think I understood the full extent of what I was about to face, and diabetes has become so much more than what I ever thought it would be. 

I have every bit of faith in myself that I'll get back into routine because number one, I have so much support from my parents, family and friends, and number two I know there will be a point where my basal rates work perfectly- it's just a case of tweaking things right now and when that happens and things settle into place I know it will get "easier". I put easier in quotation marks because it's not really "easy" but hopefully you know what I mean. 

Stage 4 will be the real test when I am fully handed back control over my diabetes and I will do it all by myself again...but I know I can do it. I really do believe in myself for real this time and I have to just keep up with it and hopefully diabetes will truly be routine like brushing my teeth...what I was told on the day I was diagnosed over five years ago. 

-Ellie 



Tuesday, 15 July 2014

Insulin pumps: Don't be ashamed

I have been meaning to write this blog post for a little while now but have never found the time or the right moment, but in light of Sierra Sandison, a type 1 diabetic who recently won 'Miss Idaho 2014'  walking out onto the stage wearing a swimsuit and her insulin pump and posting the photo on facebook; I figured this is probably about the right time to talk about this particular subject.

Sierra posted the photo of her walking down the runway, insulin pump in tow, and wrote how she finally faced her fears and showed off her insulin pump...proudly. From being a part of Type One Teens and (obviously) being a diabetic myself, I know a lot of people feel ashamed or embarrassed of their insulin pump and they don't like to show it, and choosing clothes can be a struggle because anything that shows off their pump is out of the question, and it frustrates me. It makes me frustrated that society's idea of being "beautiful" and "fitting in" means that people who wear insulin pumps feel alienated and their insulin pump makes them feel ugly. It's not true. And it frustrates me even more because an insulin pump is not all that a person is and it most definitely does not define a person's value or their beauty.

I've seen various posts on Type One Teens from some of the girls talking about how they feel ashamed of their insulin pumps- and it might be easier for me to say this and realise this because I personally see no shame in my pump but I used to feel a bit embarrassed when I first got it, but this is what I've told them.

I think of it as though nobody can even see my insulin pump. When I'm out in public I just continue with whatever I'm doing, and there have been many times when I've been out in public and caught people blatantly staring at my insulin pump. It's curiosity. They are most probably looking at it trying to guess what it is, I can almost guarantee that they are not looking at it thinking "That's really ugly" or "That thing on her waist ruins her outfit". When I see people staring at it I either look back at them or I do nothing; I don't move it away, I don't cover it up, I do nothing. Perhaps if I see someone staring at it I should stare at the water bottle in their bag or at their phone- they're normal everyday things, right? They're nothing out of the ordinary, and if someone caught me staring they would probably wonder why I'm staring at something that really isn't all that interesting...that's probably what most of us as diabetics feel like to some extent when our medical devices are being stared down by a random stranger in public, because medical devices like insulin pumps and blood sugar meters are a diabetic's "normal" and I think of it as, my "normal" diabetes life does not stop in public, it continues outside of my house regardless of how peculiar my actions may look- and it frustrates us so much and makes us feel so self-conscious about it because for us giving insulin and checking blood sugar is a part of our daily lives, just as checking e-mail on the train is a part of someone else's daily life. (Although diabetes management is a bit more important than emails- but I'm hoping you get the idea of what I'm trying to say)

At times I like showing my insulin pump, when I look down at it it's a reminder of just how hard I fight everyday to be healthy and I'm proud of that. Plus an insulin pump is a major part of the battle with type one diabetes so embrace it for being such a fabulous piece of equipment! Here is another way of looking at it, random strangers in public do not know that you wear an insulin pump, so they most probably won't be looking for one! And even if they do notice it sitting on your waist or stuck to your arm just continue what you're doing- do not let your thoughts wander into a mad frenzy of "Oh my goodness my pump must look really bad right now!" or "How can I hide it, they must be judging me". Never ever forget that an insulin pump does not define you as a person, it is a small part of you, not the whole picture- and I can guarantee that most of the time, if not all the time, when someone looks at you they see you as you, and not as someone who wears an insulin pump.

You do not need to be ashamed, nor do you need to feel embarrassed of a medical device that is part of the reason that you're even able to go out in public and enjoy your life. And don't ever feel like an insulin pump makes you any less beautiful, because besides the beauty in your face, beauty is found in your general personality, strength, your courage and your ability to handle a life with type one diabetes with grace and your head held high.

-Ellie




Wednesday, 2 July 2014

Feeling disheartened

I haven't properly written a blog post since May. I wrote a quick one for my 5 year 'diaversary' but that's been it lately. I don't really know why I haven't blogged, I have been busy with exams and sixth form but things aren't so hectic with school any more; so I don't really have an excuse! I feel like I lost motivation for a little while, I just haven't felt the desire to write a blog like I used to. Everytime I've been on my laptop I open up blogger but I just don't post. Anyway, I've decided to put that behind me and get back to blogging properly again; my blog looks so empty.

I wish I could write this post and say that diabetes is going great; but it's not. I've been struggling more than ever with it lately, and to be quite honest I'm not sure why. I feel like it might have had something to do with being thrown off track due to exam stress and things like that, and I never picked myself back up again. In March my HbA1c was 9.7%, the first time I got it under 10% in literally about three years, maybe more. The last time I went to clinic was a couple of weeks ago and my HbA1c now stands at 14%, the highest it's ever been. It's safe to say I have been feeling so disheartened about it all lately, and I am really trying but it's just that nothing is a routine for me any more, so it's too easy for me to forget to do something or to not do it at all; and I'm struggling to get back into routine. Diabetes care does not come naturally to me any more.

When you're first diagnosed people always says "It will be second nature to you, like brushing your teeth, or breathing!" It started off like that, the first couple of years with diabetes were okay, and the last few years of it all I can think of is high HbA1c's, and I wish that I was a "good" diabetic and did everything I should- but it's almost like because I lived eleven years without being a diabetic, my brain finds a way to get it back to that. I know it can't be obviously, I know I can't run away from it and I have to face it- but saying that, it's not as if I'm in denial about it, I'm aware of the fact that diabetes isn't going well at the moment, and I am aware of the fact that my blood sugars are high a lot, but I just really am struggling to get back on top of it.

I know what high blood sugar can do to me, I know how much my body will suffer in the long-run if I don't get things back under control but I'm working on it. I really am. I want to get back into control, but I'm going to run into times when I struggle, I know that. But I get really frustrated when I feel like I just can't do it, and it's really easy to feel disheartened. I don't want to struggle with it, but the fact is that I do, and everyone deals with diabetes differently and I'm just one of those diabetics who runs into "diabetes burnout" more often than not. I know looking after diabetes can be done, and I know there are so many people who go above and beyond despite type one diabetes- but then I always wonder how they do it, I wonder how they always find the drive to test and inject and things...I must sound so silly saying it but it's true, I wonder why I don't have the intense drive and they do. I want it.

I don't feel "depressed" about it, just a little down. And I'm struggling to be positive about it at the moment, until I know that I'm doing better I just feel so discouraged. I keep thinking about being co-chair of Type 1 Parliament and speaking in Parliament for Diabetes UK, and attending the JDRF Gala, and my blog and how positive about it I can be; but then I think- how can I be trying to help people when it appears I can't even help myself? I keep feeling like I've never been the right person for any of that stuff. Then I remember everyone has their ups and downs and that what I feel right now about diabetes is just a phase. I love advocating for it and sometimes I feel like my passion to raise awareness and advocate is enhanced by the fact that for me, it isn't a breeze and I've definitely experienced the ups and downs with diabetes. I can see it from both sides most definitely. And I have really realised lately that a life with type one diabetes is truly bitter sweet.

When I was diagnosed I don't think I thought as far ahead as 5 years, I was just taking diabetes one year at a time, well; a day at a time but you know what I mean. I don't think I really had any expectations or goals of where I wanted to be in 5 years in terms of diabetes- and now that I'm here I wish I did set myself some goals, it might have helped me keep up motivation and keep up a routine. I have the desire to get back into control but just can't seem to get there. I sound like such a broken record; and what I'm saying may not make much sense because I'm finding it difficult to express what position I'm in right now. It's definitely 'diabetes burnout' but I just don't know how to explain it.

Both me and my mum got upset over my HbA1c, my mum probably more than me. But I know it's because she worries and I know that you're probably reading this mum, so if you are and although I probably told you this the other week, I just need you to know I'm trying and I will get there. Find reassurance in the fact that I haven't given up and I won't give up- because I know that wouldn't get me very far. And I would do anything for you and I'm working super hard on getting back on track- for both of us, because I don't want you to worry about me, and trust me I don't want any damage to happen to me either. <3

I salute my parents for putting up with all my struggles with diabetes, I know it's super hard for them to know that I'm not doing great with my diabetes care at the moment. And I know they feel helpless but right now the best thing to do is just be there for me, because it's not that I don't want their help- it's just I feel that at the moment nothing is really working for me and I will get back into control because I've done it before and I've done it again. And in all honesty what I really need right now (and always will! ha ha) is my parents love and support because without them I have no idea what I would do- and in doing just that they are helping me in more ways than they know...!

I'm struggling to see the light at the end of the tunnel right now, I've been through rough patches with my diabetes before, but it just seems like an even worse one right now- enhanced by my HbA1c being high too. My consultant suggested going to see the psychologist to see if they can help me, but I am sort of against the idea because I just don't think it would do me much good because they are there to help you find more motivation, except I have the desire to do it and get better at my diabetes care but I just can't seem to find the routine...I mean I am feeling a bit discouraged but I feel like that's something I can get over on my own...and  I don't want to go to an appointment and find that I just don't open up at all because that would be a total waste of time. I don't know, I have a couple more weeks to make up my mind, I might warm to the idea, at least I can say that I've tried then.

That's where I'm at for now. I know I'll get there and I know I can do it, I have faith in myself that I can do this. And I know that I'm strong enough to do this, but at the moment I don't feel so strong.

Monday, 23 June 2014

5 years

June 21st 2014 was the very day 5 years ago that I was diagnosed with type one diabetes. 

I didn't get it from eating too much sugar, nor did I get it from having a bad diet. Type one diabetes is an autoimmune disease in which the immune system attacks the insulin producing cells in the pancreas- my body no longer produces insulin. Insulin turns the sugar from the food we eat into energy for the cells and if there is no insulin the sugar just builds up in the blood; which is very dangerous.

I have to replace the insulin my body does not produce by having multiple daily insulin injections or using an insulin pump that delivers insulin via a cannula under my skin...without insulin I would die. On top of giving myself insulin I need to test my blood sugar 4+ times a day to make sure it's in a safe range. My blood sugar fluctuates constantly every single day; from high to low. High blood sugar makes me feel thirsty and tired and has been the reason for me being in hospital four times in five years in diabetic ketoacidosis- a life threatening condition which can result in a coma if left untreated. Low blood sugar makes me feel weak and shaky and very hungry; this too can result in passing out or a coma if left untreated.

Even though diabetes has put me through a hell of a lot in these past five years I have actually found something positive in a life with type one diabetes too. In between all the rubbish I've tried to raise awareness as best I can, I've spoken in Parliament for both Diabetes UK and JDRF, I've spoken at a JDRF gala and I've got a blog about life with type one diabetes which has conjured up over 27,000 views in just over a year.

I wish I didn't have type one diabetes at all, but I know that sitting around moaning about it isn't going to change the fact that I have it; so I channel my frustrations into something positive instead. However, I still definitely have my down days, I have days where I cry about it, and want to give up...and I know there are things worse than type one diabetes but it doesn't deny the fact that type one diabetes is still potentially life-threatening, and poses the risk of devastating complications for me, like blindness, kidney disease, limb amputation, heart disease, nerve damage, and more.

Although my life is in my hands 24/7 and I have to deal with everything that is type one diabetes; I love life and I am so grateful that I have such supportive parents, family and friends- and I especially do not know how I would get through all of this without my parents and I am forever grateful to them for all their love and support. I have had and will continue to endure thousands of injections and finger pricks, and hundreds of pump cannula changes, along with many sleepless nights, and tears and lots of hospital appointments, and more...plus I've been through five hospital admissions (including diagnosis), but I still smile.This disease has taught me responsibility and has made me stronger. I won't give up until there is a cure.

Bring on the rest of my life with type 1; because I know I'm strong enough to deal with it, even if sometimes I don't feel so strong.

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