What it's like to be told you have diabetes, and how you can cope
Prime Minister Theresa May, who has Type 1 diabetes, is an advocate for greater awareness on the disease. Here, diabetics including UTV political editor Ken Reid, who had a toe amputated due to the condition, talk to Laurence White.
Diabetes is regarded as one of the serious health epidemics of the modern age with around 86,000 people in Northern Ireland living with the condition. It is estimated that there are around 3,000 new cases each year.
Around 10% of cases are Type 1 diabetes and one of the most prominent public figures with that variation of the condition is the new Prime Minister Theresa May.
She was diagnosed after going to her GP in November 2012 with what she thought was a heavy cold. However she was displaying the classic symptoms of diabetes - significant weight loss, drinking more water and making more frequent trips to the bathroom - and now has to inject insulin four times a day.
An intensely private politician, she initially found it difficult to talk about her condition, but has since been keen to spread the message that having diabetes does not mean that life has to change totally.
Mrs May points out that getting into the proper routine - keeping a close check on blood sugar levels and adapting her diet to take account of the condition - means that she can continue with her increasingly heavy workload and enjoy her strenuous walking holidays with her husband.
We talk to three people who have diabetes and learn how they cope with what can be a disturbing diagnosis.
‘I lost a toe ... you need to get help quickly if you notice problems’
Utv’s political editor Ken Reid was diagnosed with diabetes in his mid-50s when he experienced dramatic weight loss and a numbing sensation in his legs. His is a genetic variation and other members of his extended family have the same condition.
“Essentially I have Type 2 diabetes, but with some symptoms similar to those of Type 1 which one of my children Sarah has,” he explains.
Ken, who lives near Ballymena with his wife Sarah, is fervent about educating people with diabetes to follow the correct lifestyle regime as he is well aware of how quickly complications can arise.
“Initially, I just had to take tablets to control my diabetes, but perhaps I was not careful enough. Obviously I have a fairly hectic lifestyle in my job which may have been a contributory factor. Anyway, I developed an ulcer on one of my toes and very quickly ended up in hospital.
“I remember lying in the Royal Victoria Hospital in Belfast wondering if I would lose my toe, my foot or even a part of my limb. In the end I just lost a toe. It does affect my balance a little but it could have been so much worse.
“I was off work for seven months and in a wheelchair for six, so that shows the potential consequences of the disease. I was fortunate in that I got my toe seen to within a couple of days. The secret for people with diabetes is that if they notice anything different, get it seen to immediately. You could have very little time because diabetes affects circulation and that can develop into something serious. Never ignore any symptoms.” Ken (61), who has addressed the Royal College of Physicians in London on the topic — “even consultants like to hear the patient view of managing the condition as everyone’s experience is different” — says people with diabetes have to take it seriously.
“If you follow the rules then you can live a fairly normal life. I have to inject myself with insulin twice a day, but that is fine. You have to eat the right things and check your blood sugar level regularly.
“It is more difficult for me when I am away from home with work but mine is well under control and my blood sugar levels are within the right limits. Even so, I have had problems with my eyesight. I am getting treatment for those and it is going well.” Ken says that since he was diagnosed with diabetes he is amazed at the number of people who have told him they also have the condition.
And he sees Theresa May as a good role model for diabetics. “Some people find the diagnosis tough, but she shows that you can lead a normal life and hold down a very responsible job if you manage the condition properly.” He also points out that top sportsmen like former Tottenham Hotspur and England footballer Gary Mabbutt and rower Sir Steven Redgrave, who won gold medals at five Olympics, have the condition.
“That proves you can do almost anything as long as you manage your condition properly,” he adds.
‘It’s like you have a second job but you just don’t get a break from it’
Public relations consultant Amy Black (26) was diagnosed with Type 1 diabetes in 2001 when in primary school. She recalls: "A couple of months before a boy in my P7 class had been told he had diabetes and he stood up in class one day and told us about the symptoms he had been experiencing.
"Some weeks later I felt very lethargic but I had just come back from holidays and thought it was due to jet lag. I had always been skinny as a child, so weight loss was not apparent, but I had an unquenchable thirst no matter how much I drank.
"My mum, Anne, is a nurse and she had blood sugar testing equipment. When she tested me my reading was 34 millimoles per litre - the normal range is 4-7.5 millimoles. She took me straight to the Ulster Hospital at Dundonald where I was admitted and kept in for a couple of days.
"I remember when the reading came up on the machine my first reaction was hysterical laughter. I couldn't believe it. I knew what it meant and I was in shock. The laughter was followed by hysterical crying. None of my family had seen this coming and it felt really surreal."
For Amy, who lives in Newtownards, the most difficult time in coming to terms with her condition was during puberty. She says: "Every teenager wants to feel normal like everyone else. Here I was injecting myself every day."
In her later teenage years and at university Amy soon realised that the lifestyle followed by most of her friends had serious consequences for her.
"I discovered that alcohol really impacts on the management and control of diabetes. If I had a few drinks when I went out with my friends on a number of occasions I had seizures. I had hypoglycaemic attacks which can leave you shaking and confused.
"I didn't realise that you could get them in your sleep and because you are asleep you cannot fix it and you just sink lower and lower and it gets to the point where you are having seizures and become semi-conscious.
"I live on my own and I remember on one occasion I woke up in the middle of a seizure. It was a near death experience. Eventually I was able to get my medicine - I don't really know how - and that brought me round.
"Ever since that I have had to wear a panic button around my neck, with which I can summon help if I have a bad hypoglycaemia experience. These attacks can be very serious with people going into a coma or even suffering brain damage.
"I was never much of a drinker, so it wasn't as if I would be getting really drunk. Now I try to avoid alcohol just to be safe."
Amy now wears an insulin pump which she finds much more convenient than injecting herself daily. It is a device which looks like a bleeper and gives insulin through a tube inserted in the body. It is especially useful for children, as parents then don't have to worry about teaching staff having to administer insulin during class times.
She argues that the mental strain of diabetes is more challenging than the physical demands.
"It is like having a second job from which you never have a break and you don't get paid for. It wears you down," she says.
"For some teenage girls, the constant concern over what they are eating and counting carbohydrates, means they can develop an unhealthy relationship with food. I know a few girls who have diabulimia - they stop or skip taking insulin to lose weight but then are unable to control their blood sugar levels and they can develop diabetic ketoacidosis. This is potentially life-threatening as the body begins to burn fatty acids."
For Amy the biggest problem in living with diabetes is the complications which can arise when she becomes stressed. "It can impact on my control of the condition and I can get very sick very quickly. I just need to be aware of that. I can feel lethargic and my concentration levels can drop rapidly. Other than that, the diabetes does not impact on my life significantly."
‘It did take some time to come to terms with it’
Like the Prime Minister, Carryduff woman Roberta McCullough was diagnosed later in life, in her early 50s. She says: “I read Mrs May’s story and it reflects exactly my own experience of diabetes. I was slim and active, I played tennis every week but I experienced weight loss. There was no family history of diabetes and the tablets I was put on initially were ineffective as it was discovered I had Type 1 diabetes.
“This happened predominantly to children and adults under 40, but we are seeing it more often in the older age groups.”
Roberta admits that being told she had diabetes was traumatic. “You are living with a long term condition and you need time to come to terms with it. In my case it came right out of the blue and it took me a while even to tell other people of my condition. You have to get your head around it first of all,” she says.
“Education is the key and as time goes by, managing diabetes becomes easier. I live a normal life with a positive attitude. Diabetes fits around my lifestyle, rather than my lifestyle fitting around diabetes, and with forward planning everything is achievable.”
She lists a healthy balanced diet, exercise and managing good blood sugar control — testing it four to eight times a day through a finger prick monitor — and injecting herself with insulin four times a day as her ideal diabetes management routine.
Roberta carries a quick acting carbohydrate such as a packet of fruit pastilles or some pure orange juice in her handbag at all times as well as a longer-acting carbohydrate such as fruit or a plain biscuit. These help avoid the possibility of a hypoglacaemia attack when blood sugar levels plunge.
As evidence of her positive outlook, Roberta says: “In some ways my diagnosis has enhanced my life.
“I work part-time as a registered nurse and my supportive employer gave me the opportunity to undertake a diploma in diabetes and I am now the diabetes link nurse in my workplace.
“Not only can I share my knowledge I can also empathise with patients who have diabetes.”
Roberta is heavily involved with the Diabetes UK charity and is secretary of the Ballynahinch support group. She helps to spread the work of the charity through regular reports to her two local newspapers.
She has also spoken to MLAs at Stormont about living with the condition and sits on a number of groups with healthcare professionals to give a service user perspective.
“Not only do I feel I’ve helped raise awareness but my voluntary work has helped me to come to terms with living with diabetes and has given me the opportunity to meet many people from all walks of life,” she says.
And she has a final word of encouragement for those with the condition: “Discipline is important. If you follow the rules you can deal with diabetes and lead a totally normal life and avoid potential long-term complications.”
Remember to watch out for the four Ts
Dr David Chaney, NI national director of the Diabetes UK charity, says more adults are being diagnosed with Type 1 diabetes later in life.
He adds: "With the majority of Type 2 diabetes cases we can point to lifestyle and diet as contributing factors, but Type 1 diabetes is not related to lifestyle and diet. It is an auto immune condition which means that the pancreas ceases to produce insulin, therefore insulin must be injected daily for survival."
The symptoms to look out for, particularly in children and young people, are the four Ts:
- Tired - sleeping more than normal or lethargic
- Thirsty - experiencing an unquenchable thirst day and night
- Thinner - sudden, unexplained weight loss
- Toilet - needing to go to the bathroom more often, notably through the night or wetter nappies on babies than normal
"If you think your child has these symptoms then act quickly and seek medical advice.
"Diabetes, whatever type you have, is a very serious condition with serious consequences if it is not managed well. The long-term complications associated with diabetes includes lower limb amputation, kidney failure and, in some cases, blindness.
"Diabetes is a lifelong and, sometimes, a life changing condition but it can be managed with the right information, support and services in place."
For further information contact Diabetes UK Northern Ireland tel 028 9066 6646 or email n.Ireland@diabetes.org.uk