What it’s really like to live with type 1 diabetes

My friend Alastair is doing the Ride London 2016 and will be cycling 100 miles around London and Surrey at the end of this month to raise money for Diabetes UK.  Diabetes is a condition that is known to affect 3.5 million people in the UK (with around 549,000 people estimated to have undiagnosed diabetes).  90% of people living with diabetes have type 2 diabetes which develops when the body can’t produce enough insulin or if the insulin being produced can’t work properly.  Insulin is a hormone produced by the pancreas which allows glucose to be used by the cells in the body, or to be stored for future use, and stops the levels of sugar in the blood from becoming too high (hyperglycaemia) or too low (hypoglycaemia). Most diabetics I know have type 2 diabetes, which can sometimes be controlled by diet or exercise, but may also need to be controlled through taking diabetes medication or having insulin injections.  I also have a couple of friends who have type 1 diabetes which is caused by the body not producing any insulin at all.  Despite this, I knew very little about it and just how dangerous it can be.

 

Alistair’s wife Ruth has type 1 diabetes.  She has kindly shared an insight into what it is really like to live with type 1 diabetes and how it impacts upon her daily life:

A diabetic woman with an insulin pump (image taken from Shutterstock)

I haven’t got type 1 because I ate too many sweets. I can’t reverse it if I try a certain diet. It’s not my fault and it’s a pain – literally. For reasons scientists aren’t entirely sure of, people with type 1’s immune systems destroy the beta cells that produce insulin. So whilst your blood sugar is controlled by your pancreas, my pancreas is effectively useless and I stay alive by constant testing and injecting. There is no cure, it will get worse as time goes on and it affects my entire life. Diabetes can affect your eyes and feet (high blood sugar over time damages blood vessels), kidneys (if your blood sugar is too high your body resorts to your kidneys to clean it up which they struggle with), slows up healing (not good considering how often I’m sticking needles into myself) and all organs (back to the damaged blood vessels).

 

It takes over your whole life, from the minute you wake up (what’s my blood sugar reading?) to taking more insulin at night. I test my blood sugar at least four times a day, more likely six or seven (pricking my finger each time) and inject insulin at least four times a day – three times with meals, extra if I’m having snacks and take longer-lasting insulin at night.

 

You can’t just grab a sandwich, take an impromptu walk or go for a quick drink. Everything needs to be planned. If you have type 1, before you eat you have to test your blood sugar (involving a meter, a lancet which contains a needle to prick blood from your finger, and testing strips). You then have to work out how many grams of carbs are going to be in what you’re eating and then inject the matching dose of insulin into a fatty part of your body eg. your stomach, thighs, arms. Not easy on the tube. If you are planning to do any exercise, you have to take this into account when taking insulin (you take less as exercise burns up glucose) and drinking alcohol throws everything off. No two type 1 diabetics are the same and it’s very complicated. Blood sugar is not just affected by what you eat/drink and how much exercise you take, it also changes depending on stress, tiredness, being ill…the NHS offer week-long training for type 1s. Seriously – it takes at least a week to get to grips with all of this. So trust me, I know what I’m doing. Which leads me on to…

 

You can eat whatever you like, you just adjust your insulin dose. So please don’t make special ‘sugar free’ things for me or buy me ‘diabetic chocolate’ (which tastes disgusting). And please, please don’t ask me if I’m sure I should be eating that. But on the other hand, please don’t think I’m rude if I double check you got me diet coke or ask how long it’ll be until we eat. I have to work these things out in advance.

 

If you have a hypo, it means your blood sugar is low and you need sugar. Not chocolate – it’s too fatty so the sugars are released slowly. Sugar. So sugary drinks, fruit juice, sweets etc. If your blood sugar is high, you take more insulin. Generally simple. Unless it’s so high you need hospitalisation for diabetic ketoacidosis or so low you slip into a coma. You can have hypos at night. It’s horrible.

 

It’s not the end of the world. Yes, it’s a pain and yes it takes over your life. But it doesn’t stop you leading your life. Support is vital – from diabetes specialist doctors and nurses, from Diabetes UK and from family and friends.

 

Thank you Ruth for sharing an insight into living with diabetes and good luck to Alastair for the Ride100.  If you would like to support the work of Diabetes UK and sponsor Alastair on his cycling challenge, you can do so via his JustGiving page.

 

And then the fun began...
Cuddle Fairy

 

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11 thoughts on “What it’s really like to live with type 1 diabetes

  1. This is really informative -one of my best friends from school was diagnosed at the age of 7 with type 1 diabetes so I got very used to making sure she checked her blood sugar etc. She manages it really well and managed to have a healthy pregnancy and gorgeous baby boy, which is wonderful. I know a lot of people who have type 1 diabetes get very frustrated at the statements bandied around about how diabetes is caused by unhealthiness or obesity, as that’s not the case for them. #BloggerClubUK

    1. Thank you Ellen – I can imagine those comments are very frustrating. Glad to hear that your friend manages her diabetes well.

  2. It’s really eye-opening for someone who has never had any experience of this – although I did have a friend at work who had diabetes (not sure if 1 or 2) and had to constantly be either injecting or then phoning up the diabetic nurse if the reading was a bit off. It really is a bit of a massive headache isn’t it? I hope someone does find out a way to cure it. Thanks for linking up to #thetruthabout Louise!

    1. I have to admit I never really thought about just how all-consuming it was and my friend’s wife sharing this was a real eye-opener for me too. Lovely to link up again Sam and thank you for hosting.

  3. This was really interesting and so important for raising awareness (especially considering the myths, some of which your friend mentioned). Thanks for sharing X #bloggerclubuk

    1. Thank you – I was so glad that my friend was willing to share an insight into life with diabetes. I have to say I learned a lot from reading it.

  4. This is a great post and very surreal to how it is to live with Type 1 diabetes. I have had since I was diagnosed at 5 years old. And 25 in 10 days. I’ve had two healthy pregnancies and happily married. Type 1 is no joke and very serious. I can totally relate to many comments she said. Honestly, it’s an inner battle to deal with. But the blessing is to be here still and knowing there is medicine to keep me alive and a cure in countries using plants and so forth. Life is beautiful when you appreciate the smaller things. I have an attitude to keep a schedule and stay on track with things but with my health it can be repetitive and tiring. Being positive and having my family is worth working hard on myself.

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