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At the Diabetes UK Big Event on 14 July, one of the sessions we held was called Teenagers, transition and diabetes. During the session we heard a speech from Angela talking about her life with diabetes. Angela has been kind enough to pass the speech on to us so we can share it with you.
“I can’t remember how I felt when I was diagnosed as diabetic as I was only six years old. Ever since that day though diabetes has been part of who I am, with daily injections of insulin and countless finger prick blood tests there to remind me, in case I forget.
What’s not hard for me to forget is that diabetes is a very serious condition, with very serious complications if not taken care of properly. You cannot prevent type 1 diabetes, which usually develops in childhood; it’s not fully understood why it starts and is also the type which I suffer from. Type 2 diabetes is the more common, occurs later in life, and most of the time is caused by a lack of exercise and bad diet – but it can also be hereditary.
People often ask me how I got diabetes – was it because I ate a lot of sugar when I was younger? When they ask me this question it angers me because I don’t know how I got it, it just happened, like most things in life. Even though I take four injections a day, this hasn’t stopped me from living my life – it has instead made me a stronger person and has made me realise how precious life is.
As I have had diabetes since the age of six I don’t remember my life without it but one thing I do remember was when my parents told me that I would have it for life. Growing up with diabetes has given me a lot of ups and downs – it’s like having a relationship with a partner! I didn’t know how difficult it would be til I reached my teens and had to rely on myself to control my diabetes, instead of my parents.
Through talking to people about my condition they would often think it was easy to control – most people think that all I have to do is take an injection now and again. However when I tell people I have to take four injections and an average of four blood tests every day, they seem shocked – and that’s without telling them about having a hypo.
Having a hypo is one of the worst feelings ever, it feels like I lose control of my body. I start getting a sweaty back and hands, lose sensation in my legs and my words begin to slur. Having a hypo takes three hours of a diabetic’s energy, which means it leaves me very tired and weak. On average I have up to three hypos a week. However when my blood sugars are high it’s also a really nasty feeling as I start to feel sick to the point where I feel like vomiting and I get headaches so bad I need to lie down and sleep. This balancing act of high and low blood sugar is a really difficult and a constant struggle.
As mentioned before I have been through a lot of struggles with diabetes – ones which are completely out of my control and could so easily be fixed by the decision makers.
At the age of sixteen my disability allowance was taken away from me due to the fact they considered me to be able to take care of myself and my diabetes. On one hand they were telling me I have a disability and on the other they said I haven’t. I haven’t changed my condition, it’s still here and always will be. Even though the disability allowance wasn’t much, it still helped my parents buy me the correct food and drinks to help me through my hypos.
According to the government I am not considered to have a disability but according to my car insurance company I am being penalised – my insurance has risen due to the fact they say I have a disability. I’ve been fighting for my blue badge but wasn’t allowed one due to the fact they said being diabetic is not considered a disability.
Two years ago I became very unwell when I forgot to take my insulin – I felt sick and weak for months. Some days I wouldn’t even be able to get out of bed but to get myself better I went to the diabetic clinic in the hospital where they told me I was lucky to be alive as my blood sugars were very unstable. As a result of trying to get my control back to normal I had to test myself more often, but when I asked my GP for more medication they wouldn’t give it to me as they said I’d been using too many strips. This is ridiculous – someone with Type 1 needs to check their blood as often as they need to, especially when they’re ill – why are there these restrictions? So I contacted my doctor in the diabetic clinic and she rang and emailed my GP – but I still didn’t get the medication I needed. It got to the point where I had to ask my diabetic friend for strips. Up until this day I still have to fight for my medication.
The final point I would like to make is that throughout my secondary school years I wasn’t allowed to eat my lunch with my friends in the canteen as apparently students were scared of me because they thought I was an ‘Heroin Addict.’ This was because they were not educated at all about my condition. On a number of occasions I had my parents come into the school to discuss this situation, however nothing got dealt with so I therefore spent five years of my life eating lunch with a nurse. This obviously made me feel isolated from other peers in my class. I believe that there should be more education given to students about diabetes from teachers and parents, to prevent anyone from feeling secluded from society.
Diabetes is an ongoing battle for everyone who has the condition but I feel that if more money was given to research it could make my life and other diabetics’ lives easier – even if it was an insulin that we could do once a day would be amazing. But the government has decided not to put the money into research but by doing this, it is allowing more money to be spent on treating the complications from diabetes instead of making it better.
But it’s not just all doom and gloom – as I said before diabetes has shown me how precious life is and will never stop me from doing anything I want to do. I have just graduated from University with a 2.1 in Journalism, I go to the gym and keep fit, I socialise, I do anything my friends do – I’m even the personal barmaid to the Chelsea football team! It goes to show that with this condition you can still live an enjoyable life.
Thank you for reading.”
Great article, sounds like you had some tough times but you have the right attitude!
your article was lovely to read. i have had diabetis for 49 years it lives with me. i have excerlant doctors they give me 3 boxes of freestyle a month as i can do up to 8 finger pricks a day also a couple thro the night, so i class my self lucky, you keep on at your doctor as its important for us all to do finger pricks as many times as we want, not them telling us when we can do this. so we now how our blood sugars are running.i wish you well
Hey Angela
Well done on that article as its a very good read, you should be proud of the person you are and how strong you are. Great article an I enjoyed readin it!!!
As a grandmother bringing up her 17 year old grandson who also has had Type 1 since 6 years old, this article has given me so much insight in to a condition that I thought I knew about. My grandson lost his DLA at 16 as well, he said to me that it was as if someone in government thought you pancreas magically healed itself once you got to that age.
People have know idea how much affects not only the sufferers life but all those around them. Jack gets annoyed when there are headline such as ‘…. Such and such can cure diabetes’ without the difference between type 1 and type 2 being explained.
A really good insite into a young persons world living with Diabetes type 1.
My daughter who is now just over 30yrs old, diagnosed at 5. School life is so hard for anyone with this condition and the lunch time separation so cruel. School days should be fun, hard work and making friends. Such a blot on those schools that allow and don’t challenge silly stereotypes re Diabetes, but then so many teachere are afraid of injections and the paraphenalia that goes with the child/ young person, who has Type 1. Lets hope that ways to measure blood sugar levels advances to non invasive finger pricks. My daughter also frustrated by the rationing of strips. In the meantime, keep blogging Angela, it is great to hear what you have to share.
An interesting perspective on experiencing and living with diabetes from an early age.
I was diagnosed age 14 , in 1964, no home blood glucose monitoring,very primitive urine testing only and a two injection a day routine which meant that I must eat the prescribed amount of carbohydrate at the specified intervals or suffer the consequences .As far as I’m aware there was no disability living allowance and I am a little surprised to hear that anyone with diabetes was/is able to claim it unless perhaps their mobility or sight is compromised. Be interested to hear about other peoples experience with this on. I was asked at work around the mid seventies would I consent to being one of their registered disabled to fulfill their quota, it was not something that I sought,and I don’t really consider myself to be disabled although it clearly it can and does impact on my daily living.
Today I am on four injections a day, modern day insulins are much more advanced than they were in 1964, and of course I have home blood glucose monitoring, insulin pens, and the knowledge and ability to adjust my doses on a daily basis. Additionally most packaged food has nutritional content marked which is didn’t when I was first diagnosed.
I think really it is a matter of getting things into perspective and adjusting the mind. When told I had diabetes back in 1964, I was given the alternative, in the nicest possible way, comply with the injections/diet regime or basically you become very sick and possibly die. Its nobody’s fault, you have to meet the challenge head on and do your best to manage your life . Todays crop of diabetic Olympians should hopefully offer young people the hope and inspiration to go out and achieve whatever they can whilst at the same time managing their diabetes to the best of their ability.
It is not easy, despite all the education.technology etc it can still catch you out for no apparent reason. Having the right medical expertise around you is also important who can guide with understanding and empathy whilst also ensuring that you have the right insulins and technology to support you. I have had several consultants over the years and some of them really did not have the first clue about what its like to live daily with diabetes and the unpredictability of life.
So we are not all getting the same standard of care and attention as Diabetes Uk campaigns over the years have demonstrated. Doctors/NHS trusts/NICE and the politicians behind them who fail fund and to prescribe what is needed to manage the condition adequately should be exposed every time in the press.
Like you Angela I too was diagnosed with Type 1 Diabetes and have now had it for over 49 years. I was also on DLA the lowest possible and then they made me take a medical examination and all of a sudden I have no disability and am fit for work. Yes I can work but I know for a fact thay Type 1 is a Disabitily as if we stop yaking our Insulin we Will DIE eventually or end up in a COMA.
More needs to be done so that Diabetes Type 1 is definitely a DISABILITY and there are Hundreds of people who sadly have Type 1 and have no clue how they got it in childhood. Take care Angela and live your Life to the Full. Best Wishes always. Karen
Great story… you’ve had the exact experiences in your childhood/teenage years as I did. I was diagnosed 26 years ago with Type 1 at the age of 10 and only another diabetic knows the ups and downs along the way. I hope you continue to share your stories with us.
Fantastic article enjoyed reading it – it is so spot on! As a mum of a teenager who was diagnosed only last year at 15 years old I have been struggling to come to terms with my son suddenly been diagnosed with Type 1 and having to spend his holiday in Portugal in intensive care due to high and unstable glucose levels and all the things he now has to do on a daily basis. But like you say it makes you realise just how precious life is and your article certainly brought a lump to my throat. I am so proud of him like I am sure your parents are of you.
What a fantastic attitude, You have had a tough time but diabetes treatment is readily available and there’s lots of great advide out there too. Thanks for sharing.