I am delighted to have been asked to get involved in DAFNEplus, an NIHR funded research programme to explore how people can maintain optimum blood glucose control beyond the first few years post DAFNE. I am one of the lay members of the Programme Steering Committee, whose job it is to oversee the completion of the research.
Here is my story and why jumped at the chance to support DAFNEplus….
Since 27 November 1997 I have lived with type 1 diabetes. Some say it is one of the most complex conditions to self-manage, and as with all long term conditions it significantly affects both physical and mental health.
I had been experiencing all the classic type 1 diabetes symptoms; losing weight rapidly, thirsty, lots of trips to the bathroom, and exhaustion. Luckily for me, I lived in a shared house with my friend who is a nurse and she encouraged me to go to the GP. I can remember the consultation clearly, the GP tested my blood sugar level, jumped up and exclaimed, ‘yes, we have a real diabetic!’
He then sent me off to the hospital where a very kind diabetes specialist nurse took me to a room with a sofa and a box of tissues. I can remember the exact penny dropping moment when I said to her ‘do you mean I am going to have to inject myself with insulin every day for the rest of my life?’ The box of tissues was empty by the time I left the room.
The next thing I did was read as much as I could about the condition, as like most people I didn’t have a clue about type 1 diabetes. Unfortunately, at that time there was not much on the internet, whereas now I can recommend if you want to learn more go straight to Diabetes UK and Type 1 Resources websites.
Life with Type 1 Diabetes
Living with type 1 diabetes is not easy. In a nutshell, my body doesn’t produce the insulin which is needed to change the glucose (sugar) in food into energy so I have to inject that insulin myself. If I didn’t, then a dangerous chemical reaction called Ketosis would occur.
I worked out recently that I have injected myself over 40,000 times and tested my blood sugar level around the same amount of times. Every time I eat I have to work out the amount of carbohydrate in the food and then match the insulin to it.
The big goal is to keep my blood sugar level as close to ‘normal’ levels as possible because this reduces the risks of the many horrible complications which type 1 diabetes can result in. The other big concern is hypo’s, this is when my blood sugar level drops too low. I have warning signs like feeling hungry, irritable and shaky and sometimes I speak and think less coherently. Because of this I must always have access to sugary food or drinks, my children quite like the fact that I always have sweets in my bag! It’s not always straightforward either because so many other factors affect my blood sugar level including exercise, hormones, stress, alcohol and illness.
Anxiety and depression are highly associated with diabetes. Depression is twice as high in people with diabetes than without and 68% of people with diabetes who need psychological support do not receive it. I am part of these statistics. Whilst the NHS has mostly provided me with excellent diabetes specialist care in terms of the medical side of my condition, I have never been offered any emotional or mental health support. Actually, I don’t ever remember a health care professional asking me how I feel in the context of my diabetes care.
Something really important happened to me 7 years into my diabetes life which really helped me to feel more in control. I invested 5 days in taking part in a structured education course, DAFNE (Dose Adjustment For Normal Eating). My motivation for undertaking the DAFNE course was that I wanted to have children and I wanted to do everything in my power to reduce the risks of my diabetes affecting my children.
I am not overegging the impact of this course by saying it transformed my life. It benefited me in so many ways. I felt empowered with new information and skills and more connected (for the first time) with others who live with type 1 diabetes. My confidence and self-efficacy grew and not only did I feel it, but it showed in my HbA1C results.
Pregnancy and childbirth is really complex for a woman with type 1 diabetes but because I had undertaken the DAFNE course I was able to deal with these complexities and the results for me were two healthy children who are my world.
There are now formal healthcare NICE guidelines which recommends proven structured education courses like DAFNE for all people living with Type 1 Diabetes.
The enduring nature of living with type 1 diabetes and also the uncertainty of the future, remain for me, the biggest challenges. In the last few years my control has not been so good. It is not terrible but could be better. In the midst of a busy life juggling work, children and life in general, diabetes has slipped down the list of priorities. I think I have probably suffered with what is commonly termed as ‘diabetes burnout’. I believe mental health, technology and peer support are all pieces of the jigsaw to help with this endurance test.
For me, discovering the diabetes online community has really helped. Peer support is one of the most undervalued resources in health/care. I have learnt so much, felt less isolated and alone, found helpful new resources and been inspired by the courage and determination of people to not only help themselves but spend their time and effort helping others.
Technology has also helped by providing me with information, e.g. I can go out to some restaurants and look online to see what the carbohydrate portions are of the menus. Also the kit is getting better with new approaches to monitoring and self-tracking emerging which I have found really helpful.
Mental health support is still sadly lacking although again online resources are now beginning to be made more widely available and the need to tackle the mental and emotional side of so called physical conditions like type 1 diabetes is being acknowledged.
In the last 20 years, I have led a fulfilling life, type 1 diabetes has rarely got in my way. I’ve travelled round the world, climbed the Inca trail, got married and had children, completed an MBA and got out of doing the housework as it gives me hypo’s (milking it I know)!
I am not sure what the next 20 years will hold for me. I know that if I am able to keep my blood glucose levels close to optimum levels and if I have a healthy physical and mental lifestyle I am doing what I can to reduce my risks of complications. The DAFNEplus research programme is exploring possible options for supporting people like me to achieve that. I sincerely hope that we find the right answers or at least move forward in the right direction.
A heartfelt thank you to Professor Simon Heller and the dedicated health care professionals, researchers, patients and others involved in the DAFNEplus research programme.
Roz Davies, Sheffield
Thomas Wensing by CC 2.0