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Blog #13 April 3 2013
If you think that you are having a bad day...
I forget my test strips, insulin, hypo fix...the lot. Making sure I remember everything is difficult, day in day out. When I forget stuff, that’s when things go wrong. The things I remember I don’t even need. There’s times when I can't be bothered to test. Something else is going on, diabetes is a pest.
What makes it all worse is that my school mates think it’s cool that I get to eat in class – in fact it’s a pain having to eat when you’re not even hungry. They don't understand how hard it can be. They think it’s funny when my bloods are low and I talk lots of rubbish.
But I don't like having to live off machines and numbers. Feeling and knowing the worst could happen. I can only dream of a future without diabetes. Only then will I let go of my number one worry: ‘Will I wake up?’
Blog #12 January 31 2013
A friend of mine with Type 1 diabetes was really weight obsessed. She'd skip meals and not eat for days on end. She says that her obsession doesn't really ever go away and because she has diabetes there is always the temptation to stop taking your insulin to lose weight. It is really just like starving yourself, but it doesn't work because, as she found out, you get a weight rebound.
Her mum had no idea at all what was going on and she still doesn't. Cutting her insulin dose nearly killed my friend. She ended up in a High Dependency Unit on IV and heart monitors and was in hospital for a week. When she was on the general ward, she was accused of diabulimia and she was yelled at and she denied it - but she really didn't know how serious it was at all. She had no idea where to get help from so she never got it and she never told anyone the truth about it.
Dibulimia is an eating disorder in which people with Type 1 diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss. It’s a very secretive thing with very scary consequences and it's hard to spot, even if you know the person well.
Diabulimia usually starts because people believe that insulin makes you gain weight. Without having insulin, you have no energy, so you struggle to make it through the day. People plan on just doing it for a few days and then it can get addictive and go on for weeks or even months. Attracted by the idea of weight loss, diabulimics don't realise how dangerous what they are doing can be.
For more information and to find out where to get help, visit this site
Blog #11 16 November 2012
I am immune system. pancreas. destroyed.
I am diagnosis. denial. understand.
I am education. learning. grasping.
I am carbohydrates. counted. counteracted.
I am insulin. injections. pump.
I am line change. bubbles. frustration.
I am cannulas. sticky. painful.
I am 50 test strips. new lancet. finger pricks.
I am hypo. sweets. sugar rush.
I am within range. scream of joy. fantastic.
I am hyper. extreme thirst. ketones.
I am d.k.a. life-threatening. complicated.
I am non-preventable. life long. Type 1.
I am the cure. miles away. without your help.
I am silence. 10 hours. sponsored
I am asking politely for donations.
I am world diabetes day.
I am £300, collected and counted.
Blog #10 23 August 2012
Ever since the day I turned ten it seemed like my life had changed for the worst.
I was forever explaining to people what I could and couldn’t eat, due to the diabetes and coeliac disease. I even met with a dietician who was suggesting food alternatives and I had to tell her that I couldn’t eat them.
I also have hypothyroidism, and living with all three auto-immune conditions isn’t easy, but being diagnosed with combination of all three in such a short space of time was overwhelming.
People always seem to be surprised that I was not born with diabetes and because I am not fat they ask me ‘why?’ I can tell them what happened inside me, but even I have no idea why.
I have had Type 1 diabetes for just nearly five years now and it still seems that I know nothing. Well, actually I know a lot, and I have learnt a lot, but diabetes is a condition that you never stop learning about.
Most people assume that I am fine because I know exactly what I'm doing. Don’t get me wrong, I try my best but each day is a learning experience where you just try things and then hope for the best!
Something that has surprised me about living with diabetes is how every Type 1 person that I have met is amazing, every single one of them.
I have volunteered at Diabetes UK events and have found that you can learn from anyone, no matter how old or young. I was once at an event and a little six-year-old boy said: “I think it will be difficult when I grow bigger, because I’ll have to do it all by myself without Mummy and Daddy’s help”. You wouldn’t expect a six-year-old to think about things like this.
When I changed from four daily injections to my insulin pump I took on a lot more responsibilities, for example, changing my insulin.
I now think a lot more about the future and I would never let diabetes stop me from doing anything. I will always find ways to work round my various conditions.
Blog #9 August 2012
The realisation that having Type 1 diabetes was for life kicked in after about a year or two.
People tell me how brave I am and how they would never be able to do all the blood sugar tests and injections, but they would if they really had to. People tell us they understand, but really, only other Type 1 diabetics truly understand.
I was told my injections wouldn’t leave much scarring. My confidence was knocked as the years went by the scars and bruises seemed to become worse and although nobody ever commented on them, and the chances are they never noticed, I felt like everyone was staring at them.
I know from personal experience that diabetes is not easy to handle or control and it can cause a lot of stress. It feels like there is a lot of pressure on you about everyday choices you make and I know how strong you have to be to cope with the demands of insulin, medication and blood testing every day to maintain glucose levels as close to normal as possible.
Some days it gets tough, and you sort of like sit there and think, why me? And you just feel like living your life the same way as all of your friends. It can be difficult to accept that your immune system suddenly turned on you destroying all of the insulin producing cells in your pancreas through no fault of your own.
But, most days living with diabetes is okay. You soon get used to it and as it is part of you, you should respect it! I‘d welcome a cure of course but the priority is good care and treatment, making it easier ways to live with diabetes, day to day.
You just have to get on with life and if what I contribute towards diabetes research doesn’t help me directly, I hope that it will lead to a better standard of care for newly diagnosed people, because Type 1 diabetes is a life threatening condition and I wouldn’t wish for anyone to go through the journey of diabetes.
I am a lot stronger than I ever thought I could be and I have learnt that I probably know the ins and outs of my diabetes management better than doctors or nurses do. Through knowledge and experience, it does get better.
My life will never be the same as it was before diagnosis. I hated it, I’ve faced up to it and now I am proud being Type 1!
Blog # 8 Tuesday 11 July 2012
Oh the joys of being a Type One teen!
Being a teenager with Type One diabetes is a total inconvenience!
Just because you have exams or something special happening, diabetes does not have a day off. No matter the time of day, if you have a ‘hypo’ it has to be treated, whether you’re ill or its the middle of the night, or first thing in the morning.
Most people think that a teenager would never turn down sweets, but when it changes from a want to a need, they’re really not enjoyable. You crave sweet things you used to like as a child that you haven’t had in ages and it turns out you suddenly hate them now, as you cannot stomach the sugar.
Sometimes it feels like your body is fighting against you, even if you do everything right, almost as though it hates itself.
People can be ignorant and rude and they say stupid things because of their lack of knowledge of the different types of diabetes: “Aw my Grandad’s diabetic, you have tablets don’t you?” People’s silly little presumptions cause you to break down crying. Other people think you’re critically ill and you need help or they just don't understand diabetes because it’s an invisible condition.
You try to laugh off the silly, immature comments whilst being torn up inside. People have no idea how hard it is to live with this lifelong condition. Science teachers get everything wrong and you want to correct them, but you don’t feel strong enough.
You have to remember to check your blood sugars even when you’re laughing and joking with friends and then fill in a book or download them on the computer when you’re all stressed out with school work.
Blood glucose test strips grow legs and walk through your bags and house. You become so used to wearing infusion sets, you put a new one in and forget to take the old one out! Or you forget you’ve injected and end up accidentally giving yourself another shot. You can no longer find an injection/infusion site that doesn't hurt or have lumps. The mental and physical scars don’t disappear.
You burst into tears sometimes because you’ve had enough of the hassle of diabetes; you wish your life was back to normal - you just wish you were like everyone else.
Blog # 7 Saturday 26th May
The sun was shining, my bloods were spot on and everything seemed perfect, and to top it all off, it was the day on which I carried the Olympic Torch!! I was nominated by my youth club due to my voluntary efforts, positive attitude and charity work. I am not only a Type 1 diabetic but I am also coeliac and have an underactive thyroid, but despite these medical issues, I get on with my life and I don’t let anything hold me back.
I treated myself to a gluten-free McDonalds breakfast! I skipped lunch - excitement and nerves were building up. I didn’t run until 4.30pm and my bloods were perfect; it seemed too good to be true! I went to an evening celebration, left my meter in the car (naughty I know) ate an ice cream and didn’t bolus since I hadn’t eaten since 10am, but I felt fine.
I did check my blood sugar at 1pm, but I couldn’t carry my test kit due to the way the Olympic Buses were organised.
It was the most amazing day of my life, totally unforgettable. Saturday 26th May -diabetes loved me and I thanked my pump.
Blog#6 March 5 2012
In my previous blogs I told you about when I took my first cannula out after having insulin running through it and how it left a bigger mark than before.
Well, a friend of the family who is a paediatric nurse happened to be around whilst I was changing my cannula.
She said: “Didn’t they tell you to apply pressure?” Since then I have followed her advice and when I take out my cannula I now press my fingers down on the area where the cannula has punctured the skin. This helps decrease scaring and only leaves a tiny speckle.
It’s only been 3 weeks since I’ve been using my pump, and I absolutely adore it! It does feel extremely weird not having to inject and it’s great being able to live a relatively normal life. It’s amazing as you can live life on your terms, not a schedule of snacks, meals and shots! My insulin pump allows me to be more flexible with food, as long as I use it correctly.
Blog #5 24 February 2012
Yesterday, after changing my cannula, everything was fine and I had my pump in my hoody pocket. As I bent over to pick something up off the floor, my pump fell out of my pocket and as it fell to the floor, my cannula ripped out of my belly.
As painful as it sounds, I’m pleased to say I didn’t feel a thing! I no longer have blood sugars in double figures, but I have recently seen a rise in hypoglycaemia. Since going on the pump, my hypo treatment has changed. I now treat my hypo with 15g of carbohydrates and then re-test in 15minutes, and repeat if necessary.
At first, I didn’t think this method would work as it didn’t seem a lot of carbohydrates to bring my bloods back to normal if my blood sugars were around 2.5. But this method does work for me.
The thought of having something with you practically 24/7 can seem quite daunting and you may need to be aware of what clothing you wear. But it doesn’t totally control your wardrobe. The only drawbacks are tight-fitting clothes and possibly crop tops. Nothing’s impossible as you can always find a way around it. I’ve even sewn pockets into my onesie - this makes wearing the pump at bed time much more comfortable.
I am due to go back in a month to have my HBA1C tested again, so then I will be able to compare the way in which my diabetes care has changed, for better or worse.
Blog#4 February 20 2012
It’s been 4 days since I began to use my insulin pump.
It’s been challenging, exciting and most certainly tiring. Not having to take 4 shots day in, day out is amazing!
I feel really confident with it and I am so happy not having to inject. But when I took my first cannula out after having insulin running through it, it left a bigger mark than before, and I hope it will fade and eventually disappear.
Previous blogs I have read and people I have spoken to about pumps talk about all the extra things you have to carry round with you like resources. However, as long as you had been carbohydrate counting before changing over to a pump, I cannot see the difference with what you need to carry with you.
So far I love my Insulin pump because no one needs to know about it . You don't have to get it out. It doesn’t bother me if people ask questions or anything but the fact that strangers aren’t staring whilst you’re out doing injections is great.
I feel as though people see me for who I am, not ‘Hannah with diabetes’.
Blog # 3 February 15 2012
Mixed emotions, lack of sleep due to the excitement. Was awake bright and early due to happiness, fear, nervousness and anxiety all rolled into one. I was finally going live onto insulin using my pump!
I had my pump explained to me. My insulin pump is the Accu–Chek Combo which is controlled by my blood glucose meter. You do your blood sugars and then you enter the amount of carbohydrates you eat and exercise that you’re doing. You select ‘confirm’ then ‘deliver’ this then gives you the necessary insulin to correct your blood sugars and counteract the food.
This gives me the ability to correct my blood sugars by just pushing buttons, giving me freedom from rigid dosing schedules. Not doing injections is fantastic but it has also been quite strange and for the first few days it weird that after 4 years that I did not have to jab myself and it felt like I was missing something!
I have been testing my sugars between 6-8 times a day which is more than I ever did in the past but it's necessary so that you can see exactly what your blood sugars are doing according to your doses and according to how much and what food you have eaten.
Frequent testing is also essential because an insulin pump only delivers fast acting insulin so you don't have any long acting insulin in your system as a backup. If insulin delivery gets interrupted whilst on an insulin pump, your blood sugars can go dangerously high in a pretty short amount of time, so you need to know what is going on and treat high blood sugar levels quickly.
Blog #2 February 13 2012
I met with the Roche pump rep on Wednesday, who gave me my pump and explained the different infusion sets to go with my pump.
I was worried about putting the infusion set in. She reassured me and I put one in whilst in the hospital and kept it in for a few days without the pump attached.
At first I knew it was there, but after about 10 minutes I completely forgot. I was asked to change it over the weekend. I felt really relaxed about doing it because I was shocked how there was literally no pain whatsoever from when I put it in at the hospital.
I then realised I had to take the cannula out and panicked a little... to say the least it’s easier to put a cannula in than it is to take one out! But, this is only due to the extra-sticky plaster that holds the cannula in place.
However, I am sure that this will only take experience and courage to overcome this small obstacle. I also think that it is important to say that you should take everything in you stride. Take one thing at a time and you’ll be okay.
Firstly I was worried about putting a cannula in, which turned out fine! Then taking one out, which wasn’t as bad as I was expecting, and I thought it would leave my skin in a mess and that there would be blood everywhere, I was wrong!
I would advise everyone going onto an insulin pump to stay relaxed because your initial presumptions are more than likely incorrect, you only know if you try!
Blog #1 February 10 2012
I’m Hannah, I’m 14 and I have had Type One diabetes for 4 years and when I was first diagnosed I found it difficult to accept but after a year I realised that if I looked after myself and accepted the diagnosis then you can control it without it controlling you.
Although I managed to maintain fairly acceptable blood sugars, an insulin pump has always appealed to me; the first thing that got my attention was the level of flexibility of a pump, as it can administer insulin to suit your lifestyle.
I am going to be blogging about my journey of changing from 4 daily injections to an insulin pump.