THE REALITY OF TYPE 1 DIABETES

BODY IMAGE, HEALTH, INSPIRING, THOUGHT-PROVOKING

We have all heard of Diabetes, but do we really know what the condition involves? Reading this list from Rosie made me aware of my own misconceptions as well as my ignorance, including understanding what the difference between type 1 and 2 is. 

  • Type 1 and type 2 diabetes are very different. 

  • Someone is diagnosed with diabetes every 2 minutes in the UK

  • Only 8% of people in the UK have type 1 diabetes. It is an unpreventable auto immune disease

  • Most Type 1s are diagnosed between age 11-14. You can get it later in life, but it tends to be diagnosed in children.

  •  It is treated with insulin therapy via MDI (multiple daily injections) or an insulin pump.

  • I’m on an insulin pump. This is a device I keep in my bra, and attaches to my body via a cannula in my stomach. I have to change these myself every third day.

  • Places are very limited to get an insulin pump on the NHS, this is because they are expensive. They require training, and cost between £1-4k to purchase.

  • However, prevention is way cheaper than treatment. A hospital bed for a diabetic costs £450 a night.

  • To get my insulin pump I had to write to an ethics committee.

  • Before getting my insulin pump in my second year of university, I was hospitalised every single year.

  • We are likely to die prematurely from a multitude of complications, and 1 in 6 hospital beds is taken up by a diabetic.

  • After soldiers, diabetics account for the largest amount of people needing amputations

  • At school I had the ugliest shoes in the world because my poor mum was so worried about looking after my feet.

  • I was diagnosed at the age of 11 after losing heaps of weight, and drinking like a fish. I would take 4 litres of water to bed with me at night and have finished it after a few hours.

  • Many diagnosis go undetected because people associate being fat with diabetes. A symptom of type 1 is actually weight loss, and it’s never developed because of lifestyle.

  • At age 11 I had my blood properly taken for the first time. Having a butterfly needle in the back of my hand, a collapsed vein, panic attack, then passing out meant that I developed a phobia of this. That isn’t good when you have to have it taken 4 times a year minimum. I’m just about over it now. I still cry every time I have drips put in.

  • On the subject of needles I have had (approximately) 74,460 blood sugar tests, 22,000 insulin injections, 1092 insulin pump cannulas

  • Yes they hurt.

  • I started my business for many reasons. A key contributor was that I knew I would have dark days. Ill days, or weeks where I wouldn’t be able to work. I didn’t want to have to explain this to anyone.

  • My entire life revolves around numbers. I have to test my blood sugar when I wake up, before I eat, before I go out, before and after activity, before I drive, and when I go to bed. These numbers dictate my whole life.

  • When I was diagnosed a lovely doctor asked me what I thought I would find more difficult, the needles or the food. I said oh my god the needles! How wrong could I be.

  • Needing to weigh and count food (to work out dosages) from the age of 11 meant I developed very disordered eating.

  • Diabulemia is now a recognised eating disorder where type 1 diabetics limit, or stop taking their insulin dose in order to lose weight

  • At 15 I was told if I didn’t start taking my injections properly I would end up in a coma, or worse.

  • Insulin can make you gain weight, and it’s a catch 22. The bigger your body the more insulin you need, and the more insulin you need, the bigger your body.

  • I made the decision that I would rather be a bit fat and much more  healthy.

  • I’m constantly fishing food packaging out of the bin to check the carb content.

  • Then constantly wishing on the front of the packet it said ‘carbs’ rather than ‘sugars’. Type 1s count carbohydrates not sugars. This is because all carbs turn to sugar in the body.

  • We can eat anything as long as we know how many carbohydrates are in it. That could include a bunch or kale, or an entire lemon drizzle cake.

  • When I look at a plate of food, all I see are numbers.

  • That said, we cant have coke and full sugar drinks. These get into our blood stream too quickly.

  • Ironically we often need coke and full sugar drinks (and sweets) to save us from hypos.

  • On this note, you should never treat a diabetic hypo with chocolate. The fats in chocolate slow down the absorption of glucose, making it quite a timely treatment.

  • Whatever extra illness you have, with diabetes it’s worse. A cold? Nope that will be a chest infection. A UTI? That will likely turn into a kidney infection. Mosquito bites? You’ll probably need antibiotics. 

  • When people complain about their bodies ‘I hate my fat arms/look at my cellulite’ I can’t help but be angry. All I see is a healthy functioning body, and I’m deeply jealous.

  • I can’t be spontaneous, and I have to have a handbag that will fit in: blood tester, sweets, spare needles, spare insulin, as well as everything else a regular 27 year old woman needs.

  • I have to phone ahead at airports

  • I have to pretend that I’m okay all of the time.

  • Puberty was a nightmare, pregnancy will be a nightmare, menopause will be a nightmare. Insulin is a hormone and it likes to react with other hormones.

  • I didn’t think I could be sexy with an insulin pump. There’s something about disconnecting  tubing from your bruised belly that makes everything less sensual.

  • I’ve been asked if I’m planning a family from the age of 19. As a single 19 year old who one day really wanted a family this was pretty depressing. The younger diabetic women have babies, the safer.

  • Unplanned pregnancies in diabetic women are incredibly dangerous. Because of this I’ve been on birth control since I was 15.

  • I had a string of failed relationships and bad dates before meeting my partner at 25. Up until then I genuinely thought having a family would be out of the question.

  • It made me talk to my partner early on about the seriousness of our future. Happily, he’s stuck by me.

  • And although I know the sooner I have a baby, the safer, I am currently really enjoying life childless while my business is growing.

  • My mum had me at 37, and we have the best relationship. I didn’t ever think leaving it that late might not be a choice for me.

  • I’ve developed anxiety for the future, especially for starting a family. I’m 5x more likely to have a still born baby, and 3x more likely that they will die within the first few months of their life.

  • I will also likely have to have a c-section, and deliver well before full term.

  • Back in the 1950s diabetic women were given medical abortions to avoid complications to both mother and baby.

  • I could have kidney failure and lose my sight during pregnancy.

  • On the plus side, I’m up so much in the night already I probably won’t be losing any more sleep than normal.

  • The general public doesn’t understand how serious or difficult it is. This makes me want to scream.

  • If a diabetic joke comes on TV or the radio I will instantly turn it off. It’s never funny.

  • 64% of diabetics will develop depression as a direct link to managing the condition .

  • I worry people think I’m being attention seeking, dramatic, and boring. It’s a constant fear of mine that people think I’m complaining.

  • Type 1 diabetes cannot be cured. No amount of healthy eating, meditating, or cinnamon powder will make a difference. This is a life sentence.

  • From the outside I look healthy and happy, that’s what can happen with invisible illnesses. Under my clothes I’m part robot with tubes and sensors, bruises, and collapsing stomach muscles.

  • And I’m terrified of the future.

  • My diabetes has taught me perspective. It’s a big thing to start injecting yourself at age 11, and to live everyday knowing that there’s no cure. It means you tend to not sweat the small stuff so much.

  • My diabetes has made me ‘sensible’ which I used to hate, but I’ve grown to love. I figure I can still be fun, I just don’t make choices that will deliberately put me in danger

  • This is why I’ve never tried recreational drugs.

  • On the other hand I have been sick in a taxi and held it in my hands for the entire ride so I didn’t get fined 50quid, and my friends have had to bath me after a night out.

  • Its all about balance. Sometimes I get it wrong.

  • I tend to do the things I want to do now. I started my business at 23, I appreciate all of my friends so deeply and have no time for toxic people. I paint walls bright colours. I plan holidays and days out, I wear bikinis.

  • I say yes to all of the opportunities I can, and my heart still breaks every time I have to miss out.

  • I met a partner who isn’t cross with me when I wake him up all through the night, who stands by me even though he’s scared for our future too. I found someone who thinks I’m sexy, tubes and all.

  • Every single day is relentless, and every single day is difficult, and it will be for the rest of my life.

  • It’s taught me a lot about perseverance and strength of character.

  • I still would do anything to be free of it. 

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4 Comments

  • Reply JaneBee87 July 22, 2019 at 6:46 pm

    Thank you – this was enormously informative list. So much that I didn’t know.

  • Reply Emma Keeley July 23, 2019 at 7:36 am

    Thank you for opening up your heart, its heartbreaking to know how much you go through but important for others understand the seriousness of diabetes, that as you say is so regularly misunderstood. Thank you for opening my eyes.

  • Reply Emma B July 24, 2019 at 7:00 pm

    I must say, as a fellow Type 1 diabetic I have found this post quite negative.
    Yes, Type 1 Diabetes is presently a life long condition but some of the statements made are so extreme and very rare. I was also diagnosed at a young age and have had the condition for 15 years but I have only been hospitalised once and have been through a healthy pregnancy and have a healthy baby.
    I know things have to be real, but if anyone is reading this especially as a young women recently diagnosed and thinking about a family or the parent of a Type 1 Diabetic child, I just want to say, this is only one persons opinion/experience and many are not the same.

  • Reply Emilia July 28, 2019 at 1:26 pm

    Agreed with Emma B. Being a type 1 diabetic for 25 years now, diagnosed at 7, I feel this post is painting a rather negative life as a T1D. Yes, it is a condition that you think about 24/7, but I do not let it, and have not let it rule my life. I live and have lived a healthy lifestyle, did everything all my friends did during their 20s all with a very well managed hba1c, thus being able to have a healthy little boy who was born at 38 weeks via induction naturally with no problems. Anyone reading this post post who has been diagnosed recently please please do not feel your life will be any different from those ‘normal’ around you. The key is everything and anything in moderation, a healthy and active lifestyle and the world is yours!

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