It is Diabetes Awareness Week and this week I’ve been reflecting on ‘my wins’ and challenges since being suddenly diagnosed with Type 1 Diabetes (T1D) at the age of 30.
To say the diagnosis was a shock is an understatement. I started to have all the classic symptoms in a very short space of time (couple of months) – dramatic weight loss, tiredness, extreme thirst and hunger – even though I was constantly eating! No one else in my family has diabetes, although a few family members have auto immune conditions. I knew that something was not right as I was eating so much yet still losing a lot of weight. Luckily, I was working for a healthcare agency at the time and had some medical knowledge, so I took myself off to the GP and had a blood test. The GP then referred me quickly to the diabetes team at Trafford General who, within days, had initiated insulin and I was given all the kit I needed to help me manage my diabetes.
To begin with it was all a bit of a novelty, especially having all the medical devices. I was working on a glucose meter project at work at the time so knowledge as a patient came in quite handy. However, after about three years post-diagnosis I hit what I can only describe as a ‘brick wall’. I was doing everything that I’d been told to by my healthcare professional team but nothing seemed to be working and I wasn’t getting the control I wanted in terms of achieving my target HbA1c. As before, the Diabetes Nurse Specialist and Consultant reassured me that what I was experiencing was perfectly normal and in fact ‘I was a text book case!’ They told me that sometimes even if you are doing all the right things, managing your diabetes simply does not go the way you would want it and, rather than you controlling it, it feels like the diabetes is controlling you.
The Consultant told me at diagnosis that if I looked after myself and followed their advice there was no reason I would not live a healthy, normal, active life. I have always remembered this and considered myself lucky to be living at a time when medical advances meant that I could do just that. Sadly my diagnosis came between both my parents being diagnosed with terminal cancer (I know – terrible luck!). I was able to see the positives – at least it was a treatable disease. And at least I would still be able to follow my dream of having a child one day if I looked after myself (years ago diabetic women were advised not to have children).
Since having T1D I have run two marathons and had a healthy baby. These were mammoth challenges and accomplishments living with T1D.
My first marathon was Amsterdam in 2009 and the following year I ran Munich marathon. My diabetes team at Trafford General were supportive as always and helped me work out a plan during training. At the time I was on pre-filled pens but now I wear two devices – I wear an insulin pump and also a sensor to constantly monitor my blood glucose via an app on my mobile phone. These have greatly transformed the management and made it far more convenient than constant finger prick tests and injecting insulin from pre-filled pens.
Pregnancy should be planned in someone with T1D. I had to attend a pre-conception clinic to ensure my HbA1c was at the right level before I could try for a baby. I also had to take a higher dose of folic acid. Luckily because of all the running my HbA1c was at the right level so I didn’t have to wait long before I became pregnant. Pregnancy though was very challenging. There were scans every two weeks and my insulin dose changed constantly throughout the pregnancy. However I managed my diabetes well throughout pregnancy and, despite the challenges, I gave birth to a healthy baby girl!
My diabetes nurse once told me that, on average, a patient spends roughly 2 hours a day managing their diabetes. It is very time consuming and you can’t have a day off from it.
There have been many ups and downs living with diabetes. But my message to anyone who has been newly diagnosed, or to a parent whose child has just been diagnosed, is this – yes it is time consuming and inconvenient and unfair but with modern medicine it is treatable and it shouldn’t stop you from doing anything you want do. Living well with T1D requires a good relationship with diabetes healthcare professionals. But first and foremost it is important that you take responsibility for your own health and keep talking to your diabetes team who have specialist knowledge and who are there to help and support you.
So have fun and live your life!