Six years ago, almost to the day, my body began to attack itself. My immune system started to destroy the beta cells in my pancreas and my ability to produce my own insulin – the hormone everyone needs to stay alive – was rapidly fading. I was developing type one diabetes and I had no idea it was happening.
Today is World Diabetes Day and this is my diagnosis story.
I was 26, newly single and I’d just moved into my first flat on my own. I’d thrown myself into my job as journalist on a weekly newspaper; I was focused on my career and on a constant hunt for my next front page. I was always busy – often exhausted – but rarely gave a second thought to my health. I didn’t think I needed to. I prided myself on being something of a machine and thought I was unstoppable.
When I woke up one late November morning with blurred vision I wasn’t worried. I drove into Leeds, where I was covering a hearing at the city’s crown court. I remember leaving the court building after listening to a morning of legal arguments in a dull room filled with harsh strip lighting. My eyes couldn’t adjust to the outdoors. As I walked back to my car, I was struggling to focus on anything – the shop signs, the crowds of people, the traffic. But I still wasn’t particularly concerned. I hadn’t been sleeping well and put it down to tiredness.
In fact, I was so convinced I was just a bit exhausted that, when my editor insisted I go to A&E, I thought I was wasting NHS time. After a brief spell in triage, I was sent away and told to see an optician. One of the questions I’d been asked was about my family’s history of certain conditions and I’d told the doctor I had an aunt and uncle with diabetes (I didn’t know which type), but it didn’t seem to trigger any alarm bells for either of us.
It was actually my news editor who first suggested I may have diabetes after Googling my ‘symptoms’. I thought I only had one, but she’d noticed several. I’d lost some weight, which I knew but had put down to my recent break-up. I was always thirsty and drinking litre-bottles of water at lunchtime. I was going to the toilet more frequently and I’d been complaining I wasn’t sleeping well which was, in part, due to getting up several times a night to go to the loo. I didn’t know it, but the four most commons symptoms of diabetes are known as the four Ts: Toilet, Thirsty, Tired and Thinner. I had them all.
After seeing an optician, who pointed out that it wasn’t normal for someone’s vision to deteriorate so rapidly overnight, I made an appointment with my GP. He initially told me to go to a different optician for a second opinion, but eventually agreed to do some blood tests. A week later I was summoned to discuss my results. My blood glucose reading was high. It was 19mmol/L, when a normal reading should be between 4-7mmol/L – however, he wanted to repeat the test because he ‘didn’t believe it’. I remember the doctor saying: “I don’t want to alarm you, it could be diabetes – but you don’t fit the profile.” He suggested I was too old to have type one, but too slim to have type two. I now know that both of these assumptions were wrong. When I came out of the appointment I called my mum and cried. I just wanted answers.
While I was waiting for the results from my second blood tests – when I’d already had to wait a week for an appointment to have my blood taken – I was feeling increasingly unwell. I was supposed to be going to Stoke for a weekend with my friends, but I was exhausted and didn’t feel comfortable driving such a long distance with poor vision. My friend Becky is a doctor and when I told her why I couldn’t visit, she urged me to call a friend immediately and to get them to take me to hospital. As soon as I put the phone down I got in my car and drove there straight away.
When I arrived, doctors tested my blood sugar and it was in the high 20s. My ketone levels were also extremely high. At the time, I didn’t know what ketones were – I now know they’re an acid created when the body has insufficient insulin to get glucose from the blood into the cells to use as energy. I was told I was seriously ill and it was lucky I’d arrived at hospital when I did as diabetic ketoacidosis can be fatal.
By the time a doctor confirmed their diagnosis – that I had type one diabetes – I’d already known it for weeks. I’d prepared myself to hear those words, but I was not prepared for the reality of living with the condition. For the rest of my life I’ll have to inject the insulin my body needs but can no longer create itself. I’ll have to monitor my blood sugar, count the carbohydrates I eat and make potentially life or death decisions about how much insulin to inject on a daily basis. It’s a reality I still find difficult to accept now.
Within 24 hours of diagnosis, I had been sent home from hospital with a bag of insulin and needles and a new way of life.
Six years on, I’ve had to learn what diabetes is. As it’s a condition you largely manage yourself, I’ve had no choice. I’ve had type one diabetes for 2,162 days now and have given myself more than 10,000 injections in that time. I don’t always get things right – I’ve had more hypos than I can count and have had one serious hospital admission – but I am constantly learning to manage my diabetes.
My diagnosis story is unusual because it took so long – more than three weeks of appointments. I didn’t know the symptoms, so I didn’t recognise them. My doctor wrongly thought that, as I wasn’t a child, it was unlikely I had type one. I’ve since learnt that type one can develop at any age. Once I was out of hospital and recovering, I complained about my GP’s conduct as I believe his failure to diagnose me left me dangerously ill. I live on my own and it’s awful to think about what could have happened if I had not gone to hospital when I did. I now trust my own instincts more when I know something doesn’t feel right.
On World Diabetes Day, I hope more people learn the symptoms and raise awareness of type one diabetes. If you have any questions leave a comment below. I’d also be really interested to hear others’ diagnosis stories.
Hannah Postles 