Sarah's story: learning how to prevent serious complications from diabetes

I was diagnosed with type 2 diabetes in May 2014. But I'd been getting what I now know as the symptoms for around six to nine months before that. I'd become incredibly thirsty all the time and was drinking gallons of the wrong stuff, like bottles of pop. So I was going to the toilet a lot and then developed bad thrush. I'd constantly wake in the night to go to the toilet and would then end up falling asleep in my chair. I could barely sit down due to the pain so visited my GP in a desperate state. 

My doctor had a specialist interest in diabetes and made me come back the following day for blood tests. When I phoned for the results I was told, “We can’t tell you the results over the phone but we’ve made an appointment for you to see the nurse in the diabetic clinic.”

Between being told this on the Tuesday and attending my appointment on the Friday, I'd read every horror story you can find on Google and was incredibly worried and upset. I was in there for between 20 minutes and half an hour with my mum, and all I can remember is them saying it was a lifelong condition and I needed to make lifestyle changes. I was put on to metformin straight away and later insulin, as my HbA1c was 94.

I left the appointment and went straight to do my normal weekly shop. I remember picking everything up and reading the labels of all the stuff I'd normally buy and having to put the food back on the shelves. In the end, I burst into tears in the middle of Tesco, abandoned my trolley and went home. I was in shock.

I'm always hyper aware of the complications that can happen because of diabetes, so if I notice anything odd I will go straight to the doctor and get it checked out.

I now have eye screening once a year. They are so important as they can pick problems up early. I also have my annual blood tests, foot checks at the doctors and then six months after that I will go to the hospital where they check my feet again and my insulin levels. So far, I don't have any complications with her eyes. 

And when people from my group tell me about things they're concerned about, I'll always encourage them to go and see their doctor. I always encourage them to get their healthcare essentials, screenings tests, and collect their results - and ask what their results mean too. It's not just about going to your appointments, there can be a lull in between these and people need to do things to keep their condition in focus.

My turning point was when I was sat in my doctor’s surgery and saw a postcard for Diabetes UK’s Living with Diabetes Day. That was the day that completely changed my life. Although it was a lot to take in, I took my mum along and we both learnt an incredible amount. I spoke to dietitians, diabetes specialist nurses, consultants – everyone was there to do their little bit. After the event, the message hit home that with good control, I can do something to avoid serious diabetes complications like sight loss, kidney problems or needing an amputation.

It was at this event that they asked who would like a support group in Newport (the area I lived) and 200 hands went up. Not long after that, I started the group. I started it because when I was first diagnosed, I wanted someone to say to me, “it’s not the end of the world, come and have a cup of tea and a chat.” That was what I wanted the group to be like, so that people didn’t feel alone and could help one another. 

I can sometimes feel isolated. My kids are amazing and very supportive, but there are times when I get frustrated because they don’t understand what it’s like, as they don’t have to live with it. 

When I’m feeling down, really down, it can feel like it’s the end of the world. And there are times when I don’t know how I'm going to carry on, but it’s at those dark times that I pick up the phone and speak to someone from the group or send them a few text messages. This really picks me up.

It's been running for three years now and I get a sense of satisfaction and achievement from running the group and from constantly learning something new about the condition from the different speakers we invite. 

Looking back, my lifestyle was unhealthy and I'd always been a big girl. At first, I felt really uncomfortable and self-conscious as every time I picked something up to eat it, someone would ask me whether I was allowed to eat it or not. It was a time for a lot of education, not just for me but for those around me too. I decided I needed to diet and put the kids on the diet with me.

Now, as a family we sit down and plan a menu together each week – it’s our Thursday night ritual. I think planning is absolutely essential and helps me a lot.

There were other changes I tried to implement, like trying to do more exercise. But I have a problem with my balance, which at times hindered my progress. I tried the NHS Couch to 5k, which was great, except for when the dizziness was really bad and I couldn’t run in a straight line.

So I spoke to my doctor who referred me to an Exercise on Referral scheme. This involved going to the leisure centre for a medical with the nurse and getting advice on the type of exercise to do, which was really helpful.

I've now completed the Diabetes UK London Bridges challenge for the past two years. The first year it took me six and a half hours but after lots of training I've managed the second attempt in three and a half. I remember getting to the finish line and saying “I’ve made it mum” before bursting into tears. I was incredibly proud of myself and really enjoyed it.  

I try to walk to more places, like if I pop into town I will walk and not get the bus. It’s a case of retraining myself to do it. My HbA1c is now 50.

I wish I'd been given more information when I was first diagnosed, as opposed to being told you have diabetes and someone will see you in six months’ time.

So in addition to running the Newport support group, I'm currently volunteering with the health board and the expert coordinator for structured diabetes education. The aim is to get more bums on seats at the courses, so I rings patients and ask if they want to do these courses, explain what's involved and that I've done it myself and can vouch for how good they are. As a result, they seem to be getting more uptake. I think that a lot of people don’t realise there is structured education out there so working on the promotion of these courses is essential. 

I'm also on the reference panel for the Diabetes Research Unit at Swansea University and reviewed new Pocket Medic videos before they were made public. They show sensible ways to shop and what to look for on food labels. When I was diagnosed, what I was going to feed my family was a real panic. I think these videos should be compulsory viewing for everyone at their diagnosis appointment.

When I was first diagnosed, I was in a bit of a rut and felt really sorry for myself because I was unwell. But I now feel that my diagnosis has given me a purpose – to spread my knowledge and raise awareness with as many people as I can.