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Cara Dillon - my life with Type 1 diabetes

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Folk singer Cara Dillon, 41, was diagnosed with Type 1 diabetes in 2007. The award-winning artist grew up in Northern Ireland but now lives in England with her husband and manager, Sam Lakeman and their three children, twin sons Noah and Colm and daughter, Elizabeth.

Here, Cara chats to Diabetes UK about the challenges the condition poses for her and why she's hoping to offer music lovers an alternative to Slade this Christmas.

How has life changed in the nearly 10 years since you were diagnosed with Type 1 diabetes?

"It's difficult to believe how much it has changed. It's become a part of who I am, like part of my name. I think of myself as Cara Elizabeth "Diabetes" Dillon.

I can't believe that I'm unable to pick up a bar of chocolate or banana without thinking about how it might affect my blood sugars, I see food as numbers, I can't jump in the car without checking my sugars, I can't leave the house without my testing kit, my insulin pen, some snacks etc. I have a special cupboard filled to the brim with all my medical supplies.

I wish every single day that it would go away, that the highs and lows weren't there. One day I'm doing great, my blood results are excellent ... the next day I'll feel low after a hypo or two or three. I constantly have sore fingers from all the blood tests. I'm fed up with the bruises where I inject my insulin ... I feel like a pin cushion! All this, and I worry about what will happen to me in the future.

But, as well as all those tiresome and inconvenient details I've also become far more aware and more patient. I have a greater empathy for people who suffer with other conditions. I've learnt that I'm brave, I'm proud of my achievements ... sometimes every single day is an achievement and I’ve learnt to call myself amazing and courageous.

I'm a hard-working, self-employed mother of three, I don't have a personal assistant or a live-in nanny and my parents and other family are in another country. I know I'm a good example of how you can live a full, adventurous and uniquely demanding life with Type 1 diabetes. Sometimes it's miraculous I do any of it at all ... but that's life."

What was your initial reaction when you were diagnosed?

"The GP seemed unclear about late onset Type 1. He thought I had Type 2 and started me on a course of pills and gave me a blood testing kit without the word diabetes being mentioned and I thought I had cancer. For an entire week my readings were over 26mmol/l every single time I checked myself and I had no clue what was going on. When I was finally rushed to A&E they got me started on insulin and got me levelled out.

When I got straight, changed GP and knew what it was I was dealing with and how it was going to affect my life I was 100% totally overwhelmed and went into shock for days. I just felt like I was never going to be able to have a life and care for my twin babies ever again. It was like I was mourning the life I had had before. Then one day I woke up and looked at my two babies and thought "to hell with this! I'm not going to let this stupid disease stop me from caring for these two little boys!" and I vowed to kick diabetes’ ass! That's what I've tried to do every single day since and I think I'm doing a pretty good job so far!"

What is the hardest thing about having the condition?

"The relentless testing and injecting...it just gets to me sometimes. I'm a bit of a control freak and like to be top of the class and this gets in the way. It's so frustrating to constantly have to think about my blood sugar levels. It's infuriating when I can't seem to keep them under control and they jump unpredictably and it's sometimes really, really scary when I find myself having a bad hypo and I'm far from home without the familiar foods I know and trust to sort me out. It's not something to take lightly or ignore.

Sometimes it's the challenge of just keeping it regular. Other times I need to try and get my blood sugar under really good control for a recording session. It's an incredibly fine balance when you have an orchestra in Abbey Road waiting for you to sing and a bunch of Disney execs behind the glass expecting a performance."

How did you cope in the early days of diagnosis when your twin boys were still so young?

"In all honesty, I think it was the boys’ extremely premature birth that was in some way responsible for me developing late onset Type 1. They were born at only 26 weeks after I went into labour onstage during a concert. After an unbelievably traumatic three months in hospital they were finally able to come home with Sam and me. They were still only just 7.5kg at a year old and we were worried sick about them.

Added to that I still had to go out and perform. I was on tour in Ireland when I got sick and I think that's what triggered the auto-immune reaction. I was exhausted and I started getting all the signs that something was seriously wrong and I knew it was bad when I went into the twins’ room one morning and I couldn't physically lift them out of their cot.

Everything about the early days is a bit of a blur because I was sleeping very little with night feeds with the twins and I was still learning about controlling my blood sugars. I was having constant hypos and then swinging really high. It was very, very tough. But over time it got easier and the boys started thriving and I felt that anything was possible. Knowing that I managed to cope with all that has given me great strength. What doesn't kill you makes you stronger, right?"

Did you get the help and support you needed when you were planning your next pregnancy?

"Yes I did. I can't fault the support I got from the moment we decided to try to the months following Elizabeth's birth. I was under the watchful eye of the experts at the Endocrinology unit and my obstetrician who were both based in Bath's Royal United Hospital. I felt very reassured by their constant monitoring and the sense of concern for the wellbeing of the baby and me. My consultant even called me before I went on stage at gigs to check I was doing ok. When it came to 37 weeks I elected to have a scheduled caesarean section because I was stressing so much about the increasing danger of stillbirth nearing full term. All went very well and I'm blessed it did."

How does being on tour affect your diabetes?

"Well, that's where Type 1 diabetes feels like a huge challenge. Try to imagine how stressed and excited you feel when you go on holiday. What will the flight be like? The hotel? Where will we eat? Will I like the foreign food? What if I get sick?  Well, throw in a public performance and imagine doing that every single time you step out of the door to go to work.

There are so many variables when I leave the house to go on a run of concerts that I have to be prepared for everything and even then I still find myself in trouble. I try to eat two hours before I go onstage to let my system balance out. However, that is rarely possible as we could be delayed in traffic or the sound-check could overrun with technical difficulties. My blood sugars invariably go up when I perform live so I have to  try and keep them with range before I go on.

The adrenaline rush of being onstage kicks my blood sugars high and that affects my singing. When they get even slightly high (say over 8mmol/l) I can't hit the notes I need to with as much ease as I'd like, a little higher and my hearing starts to go and I get really, really tired. It's like walking a tightrope. My singing is usually very exposed and precise.

I'm not in a rock band where I can hide behind a guitar solo or the drums. I'm usually in a concert hall singing with a few acoustic instruments, sometimes unaccompanied, sometimes with a symphony orchestra. It's extremely taxing and I never ever take it lightly. I always give everything I can when I perform and it shows. I quite often have rebound hypos in the middle of the night after a concert.

The travelling is also extremely difficult. For example I've just returned from a short tour of China where I sang in four cities which included five flights (31 hrs), 1 bullet train (8hrs), 11 airport transfers (16hrs), bed at 1am and leaving hotel at 5am every day for five days; gruelling doesn't come close to describing it. Then you have to consider the food and not knowing what we're eating the majority of the time. I filled my bag with brioche rolls and cup a-soups for emergencies. It was my fourth tour and it was the best craic I've had in ages. I have some pretty comprehensive health insurance, that's for sure!"

Do you feel people are well informed about your condition? Do you get irritated if people don’t ‘get it’?

"No, and to be completely honest, I was one of those people. I had no real understanding about diabetes until I was diagnosed. I knew very little about the serious health risks relating to it. My understanding of it was very superficial and ironically that's what frustrates me now when I tell people I'm Type 1.

The most common thing I hear is, "Oh wow, how did you lose all the weight? You're so small." or " Yeah, I have diabetes as well (meaning Type 2), it's a shame we can't eat all that chocolate anymore."

I sometimes wish that there were entirely different names given to the two types of the same disease, then I think it would be easier for people to understand how significant the difference can be.

That being said, my own diagnosis has led to everyone that works for me now having a great understanding of the condition. My tour manager, band members, sound engineers and booking agent, even my radio plugger brings biscuits along to live recordings "just in case". All my family, my friends and even the promotors of the gigs have to be conscious of my condition. That's a whole lot of people who now know a lot more about diabetes than they did before I was diagnosed."

What advice would you give any loved ones if they find out a member of their family or one of their close friends has Type 1 diabetes?

"I guess I’d tell them to try and understand how significant and serious the condition can be so they can try and empathise as much as possible with the ups and downs (emotionally and physically) that will inevitably happen, but also that when their family member or friend get themselves on an even keel then it's relatively invisible and doesn't really change a thing. I'd recommend they learn what to do if they feel they need to intervene in the event of a hypo or excessively high blood sugars...that would be it. Knowledge is key."

Do you worry about your children potentially one day having the condition? Are you prepared if it happens?

"Of course I worry, what mother wouldn't. However, I feel that they would have a very different experience of the condition if I was at their side to guide and reassure them than if they were diagnosed as a child in a family where they were the first. I think that is the most difficult situation there could be. I've thought about it happening and obviously I've been very open with all three of them about my blood testing and injecting. They see me doing it all day every day since they can remember. It's all they know and we would just cross that bridge if and when we had to."

Do the children understand that Mum is a bit different? Would they know what to do if you were having a hypo?

"Absolutely, they know I have this condition and it's an important part of my life. They all know what to do when I have a hypo. Even Elizabeth, who is only just six years old, knows where to find my glucose tablets at home. Only recently when we were walking along a canal in Bradford-Upon-Avon I had a really bad hypo but we were a mile or so from anywhere. Sam  stayed by my side and the boys instinctively ran off down the tow path to ask some other walkers if they had any food for their mammy and they came back with an apple and two biscuits.

Fifteen minutes later when I came round we continued our walk to the pub and had a drink and some food. To be honest I know they can't really comprehend the consequences of my diabetes but as long as they know what to do and that it's very important, that's all that matters. Thankfully I'm lucky enough to know when a hypo is happening and have never fallen unconscious as a result of one. My warning signs are very strong."

Who or what has helped you the most to cope with having this condition?

"I have to say Sam, my husband. He has been undoubtedly the most reassuring and supportive person throughout. Obviously he's with me 24/7 and as a result he follows my ups and downs with me. He's forever insisting I check myself when I don't feel there's any need only to find out that he was right and I was very high and obviously confused. He's arranged with our booking agent to have certain foods included on our backstage rider to cover all eventualities. I may need instant sustenance upon arriving at a venue after being stuck in traffic or I may need to stash something in my bag for a middle of the night hypo etc.

As for what I'd say a set of digital scales that I used when I started counting carbs in the beginning, they were invaluable."

Have you met any other Type 1 musicians or fans?

"I've met quite a few Type 1 fans who are all very pleased to have an extra special connection with an artist they like. It feels like this special club that you're in and there's always a few knowing nods and laughs about certain things. I've only met one other musician with Type 1 (although it's not my place to say who) and we spent a journey to a festival together discussing the pitfalls. He said that his biggest fear was having a hypo onstage so he would overcompensate by eating lots of sweet things before going on which left him wrung out afterwards. I didn't think this was a good plan at all and told him so."

Tell us what you are up to at the moment?  

"I’ve just returned from another short tour of China which was as mind blowing as it always is. I'm going to Disneyland in Paris for half term to watch a live show that features two songs I recorded in May. In addition, Sam and I have just finished recording my first Christmas album which is called "Upon A Winter's Night" and is released on November 18th.

I'll be going on tour throughout the UK with my band to perform the Christmas songs in late November and early December. I'm so excited to be finally doing this as it's something I've wanted to do for years and years. I like to think that my voice and style of music bring a whole new feel to Christmas that's makes a good antidote to Bing Crosby and Slade. As for next year...it'll be gigs, recording and singing as usual...all while raising three kids, testing and injecting."

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