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Advice for people with diabetes and their families

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“The emotional impact of not being able to drive hit me hard – I felt like I’d lost my freedom and independence.”

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Mim is currently a student working on a PhD in social work. In 2012 she was diagnosed with Type 1 diabetes at the age of 36, after going into a coma and needing emergency hospital treatment. At the time of diagnosis, she felt overwhelmed by everything she immediately needed to know so she could manage her Type 1. 

Mim had a severe hypo last year, which resulted in her driving licence being wrongfully revoked. We helped her get it back. Since then, she’s worked hard to keep on top of her blood sugar levels so that she can continue driving

Mim Cartwright 
Aged 42 
Has lived with Type 1 diabetes for nearly seven years

 

 

“There’s no day off from it. Every time I eat, I need to think a lot about how it might affect my blood sugar levels.” 

Mim's journey with diabetes:

  • Now 42, Mim was diagnosed with Type 1 diabetes in 2012 when she was 36.
  • She went into a coma before being diagnosed. 
  • The hospital where she was treated and diagnosed gave her leaflets on the condition, but Mim felt overwhelmed by it all.
  • Having Type 1 diabetes meant that she had to get to grips with taking medication and managing her condition immediately, which she found stressful.
  • Driving became an issue for Mim, when she was taken to hospital last year in an ambulance after she had a serious hypo. Afterwards, her licence was wrongfully revoked by the Driver and Vehicle Licensing Agency (DVLA).
  • Mim, with the help of Diabetes UK, got her licence back, but found the emotional impact of being unable to drive for several weeks hard to cope with. She felt a burden to friends and was unhappy about the loss of her independence.
  • Looking back, Mim wishes she’d been better informed about driving rules and diabetes. She’s now very careful about managing her diabetes, so that she can continue to drive. 
  • She can’t afford flash glucose monitoring, but has tried the FreeStyle Libre. 

My experience of diagnosis 

Being diagnosed with Type 1 back in 2012 was a very stressful time for me. I was 36, and went into a coma and was rushed into hospital. It felt like I had no time to adjust to my diagnosis – I had to just get on with it. I had to get to know so much so quickly – it was a question of having to sort out how to manage my diabetes with medication straightaway. I was given loads of leaflets about diabetes, but I just felt so overwhelmed. And then I was told that I couldn’t drive for a few weeks, until my blood sugar levels had settled and I had reported my diagnosis to the DVLA.


Driving, Diabetes UK and me

Driving was a concern very soon after diagnosis for me. I needed to get to the pharmacy for my diabetes medication and to hospital appointments, but initially couldn’t – having been told not to drive. I didn’t want to be a burden – having to ask for lifts all the time. 

I found not being able to drive really hard, but things settled down after that and seemed to be fine – for a while. But then I had a severe hypo last year and wasn’t able to manage it myself. I called an ambulance and was taken to hospital, where I saw doctors and nurses I didn’t know as none of them were connected to the diabetes team who usually care for me. That’s where my problems began – they advised me not to drive on the basis of this one hypo. They told me to call the DVLA and repeat what they’d told me to say to them. This resulted in my licence being revoked.

I couldn’t believe this had happened – it seemed unfair. I needed answers and support, so I phoned the Diabetes UK Helpline number, which I got from their website. They confirmed I was right in thinking that the DVLA shouldn’t have revoked my licence based on one hypo. 

When I’d contacted the DVLA about it, it felt very impersonal and slow. They weren’t very helpful. But I found the helpline team were personal and supportive. They have a contact at the DVLA, so through that relationship between the two organisations they were able to help me get my licence back. I got it back in six weeks. The DVLA sent a letter admitting I hadn’t needed to have my licence revoked – but there was no apology.


Hypos

It’s been a really important lesson for me – had I known more about driving rules, and had been more informed, I might have talked to the DVLA differently. I could have been more empowered with the right knowledge.

In spite of the problems I’ve had, I realise that driving rules are there for the right reason – to protect everyone with diabetes and the public. But I still think they’re unclear and complicated.
I know that my blood sugar levels have to be 5mmol/l to drive. And if they’re 4.9mmol/l, then I need to eat something to bring my blood sugar levels up so I can drive. 

If I have a hypo, I can drive again 45 minutes later once I’ve done a test and my levels are OK. And if I have a hypo when I’m driving, I know I have to stop, turn off the engine and take the keys out of the ignition. Then move to the passenger seat. 

I used to always use Jelly Babies to treat my hypos, but once, in the summer, they melted in my car when I was at a park and ride. I needed to treat a hypo, but they were all congealed. I couldn’t find a vending machine, either, so had to ask people in the bus queue for something sugary. It was embarrassing! Now I keep glucose tablets in the car – they’re more reliable and last for ages.


Emotions

I think the most challenging thing for me now that I have Type 1 diabetes, is having to be aware of it all the time. There’s no day off from it. Every time I eat, I need to think a lot about how it might affect my blood sugar levels.

The emotional impact of not being able to drive was another thing that hit me hard – I felt like I’d lost my freedom and independence. Not having control when it came to getting from A to B was so stressful and I didn’t want to be a burden.

I didn’t like asking people for help, either. But I had to ask my friends to drive me to places and give me lifts home when we went out in the evening. Having to plan ahead a lot more was so exhausting, like having to remember to take a rucksack to work so I could go shopping on the way home and carry stuff home.

Emotional impact aside, not being able to drive affected my social life and work, too. It doubled my commuting time, as I work in Bristol city centre and live out in the countryside. There’s only one bus an hour, plus a walk to the bus stop and then a long walk when I get off at the other end. Not forgetting the financial impact – the cost of bus tickets really added up.


Guidance and support

I went on a DAFNE course, which really helped me learn more about having Type 1 and gave me the opportunity to meet other people who share my condition. I found peer support through hospital groups, too – and ended up joining Facebook and WhatsApp groups. I found these groups were really important, as we supported each other and discussed things about Type 1 that we had questions about. I posted questions in the group, too – including questions about driving rules when my licence was taken away.


Managing my Type 1 diabetes

I can’t afford flash glucose monitoring but I know how life-changing it can be.  

But the fact that people with diabetes can now use Flash when they’re driving to check their blood sugar levels is great news.

The one thing I wished I’d known when I was first diagnosed, over six years ago, was that you don’t have to be perfect. I kept trying to get the numbers right – perfect, even. I was a perfectionist. But then in time I learnt to let go. The one bit of advice I’d give to anyone diagnosed with Type 1 diabetes now is – be kind to yourself. 
 

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