Rachel Salt's son was diagnosed with Type 1 diabetes when he was 17. After a difficult spell he fell in to a coma and ended up in intensive care.
Since his recovery he has been able to come to terms with his diabetes and is now able to manage it better. Determined to raise money and awareness to fight diabetes and support her son, Rachel is taking on the 2018 Great North Run with Team Diabetes UK.
Rachel's story
Ben was working on his A levels when he was diagnosed which was already stressful for him and he was not far off his 18th birthday. He was badly affected by the diagnosis and decided to rebel against it. He carried on eating everything he wanted, didn’t take his insulin when he told us he was and was not checking his blood sugar levels.
He got depressed and skipped school, I had to find him several times and take him back to school and try to talk to him about how it didn’t have to affect his everyday life and that his A levels was going to get him where he wanted to go, university. He wouldn’t listen to me. The idea of not being able to go out getting drunk with his mates once he turned 18 without the worry of his diabetes was also another issue.
Intensive care
Eventually it came to us finding him collapsed on the bathroom floor, his blood sugars and ketones sky high and an ambulance had to rush him into hospital. We were told his condition was extremely serious and they put him into an induced coma to try and help his body to recover. We took a photo of him whilst in the coma hooked up to many machines hoping it would scare him into starting to look after himself. When he did finally come out of the coma he assured us he would try harder, but 6 months later he was back in intensive care. They didn’t have to put him into a coma this time but he was still in a serious condition with severe dehydration and a chance of organs shutting down.
Progress
Since then he seems to have come to terms with it, we haven’t had any hospital visits for a while but as he is now over 18 and doesn’t allow me to come to doctors’ appointments with him I can only take his word for it. His weight does go up and down like a yoyo.
Worrying about his safety
Finding him on the bathroom floor was the scariest thing I have been through. He was about to go to university, it made me paranoid, I didn’t want him out of my sight.
We did let him go but if he didn’t answer his phone or texts it would send me into a panic and I would be texting his flat mates, his landlord, anyone I could find that would check on him. He didn’t like this. He’s since moved to a university closer to home, but I still panic if he doesn’t answer me on the phone and he could be genuinely unable to answer.
I am a mother of four, I work full time and I am at university; so with an already extremely busy life it’s really hard for me to not worry constantly about him. I also found out he had not attended any of his hospital appointments since turning 18 but there was nothing I could do about it as he is classed as an adult and I had no right to the information. I found out through chance.
Difficulties with care
There are a couple of things I would like to see happen with helping people to deal with diabetes. When Ben was diagnosed at 17, they couldn't decide which team to put him under.
They put him into the children’s team to begin with and I just don’t think they had the right tools to deal with a teenage boy. They treated him like a child and told him to give up all sugar and told him insulin doses to take. This didn’t work at all as he still ate what he wanted and wasn’t getting anywhere near enough insulin. The adult team were slightly better giving him a little bit more responsibility to work out his own insulin doses by carb counting. He found this interesting and helped him to focus a little on what he was eating.
"He also commented a few times he wished he knew someone his age that had Type 1 to talk to. He obviously found it hard to talk to adults about his diagnosis"
The need for support
He also commented a few times he wished he knew someone his age that had Type 1 to talk to. He obviously found it hard to talk to adults about his diagnosis. I really think a peer group of people his age in either a face to face meeting, a chat forum/an app or on social media would have been massive help to him at the time he was diagnosed and would probably still help him now.
The other thing I would like to see is the 18-year-old given the option to designate a ‘buddy’ someone who can keep an eye on him as at 18 I still don’t think they are all that responsible. Someone who can check he is attending hospital appointments and that he is being kept up to date with nurses appointments at the doctors.
When Ben has not taken insulin and his blood sugars are high he gets moody, his temperament changes and he snaps at people. I can tell straight away when he is not looking after himself but there is absolutely nothing I can do about it. If I told him I was taking him to the doctors whether he liked it or not he would come but I am not able to find out when his hospital appointments are. I’m sure a lot of deaths could be stopped if someone could help keep track of a young person’s health checks.
Running for a cure
I started running 7 years ago when I finished my treatment for breast cancer. Partly to raise money for Cancer Research, partly to help lose weight from all the steroids and partly for my mental health to get over the shock of cancer.
When Ben was diagnosed I realised there were loads of people raising money for cancer, but I had never been asked or seen anyone raising money for diabetes.
I wanted to help raise money for research into curing diabetes and maybe to make people aware that children diagnosed late in life as teenagers have not had the time to come to terms with the changes in their life, whereas children diagnosed are more used to coping with their diabetes by the time they reach the rebellious teenage years.
I don’t think there is enough out there for teenagers diagnosed late in their life as a child.
Fundraising and run training
I don’t find running easy and I am not fast, but if I can raise as much money for charity as I can I am happy. I started with Birmingham half marathon and with my friend raised around £600 for Diabetes UK. I helped my mom do a charity cake stall and raised over £1,000. I then decided I wanted to try and raise more so I applied for the London Marathon.
I never thought I would be offered a place so when I got the call to say I was in the team I was extremely shocked and also scared. I had managed to get up to a half marathon training on my own but I wasn’t sure if I could train for 26.2 miles on my own. So I joined a local running club called Sneyd Striders.
The club was amazing, not only helping me train during our club nights but a few of the members worked out my long runs on a Sunday for me and I always had 1 or more of the club run with me. Some were not training for anything but still ran longer runs every week and got me up to 20 miles. It was extremely difficult to fit in my university work, my other children and working full time but luckily I have a very supportive family and husband. I was worried about the £1850 target sponsorship, but I managed to raise £3,000 and I was over the moon. The London Marathon with Diabetes UK was the best experience I have ever had with a run.
The Great North Run 2018
This year my university workload has increased so I didn’t feel I had the time to train for the marathon so I decided I would do the Great North Run instead, it would be less training intensive. My very good friend Heather who I work with offered to run with me, she is running for Breast Cancer Care so I get the best of both worlds, plus she will help me with the fundraising. Together we will be doing raffles, cake sales, quiz nights and a virtual run to raise money for the 2 charities. We will also be running the Liverpool Rock and Roll Half Marathon in May which I will be doing in my Diabetes UK vest, promoting Diabetes UK and to also help us get more sponsorship.
Support from Ben
Ben has supported at both the London Marathon and Birmingham Half and came to cheer me on. He is very proud of me for it and I think it has really helped him to come to terms with his diagnosis.
Looking forwards
I am really looking forward to running Liverpool and the Great North Run for Diabetes UK and hope the money goes to research for a cure and maybe to look into setting up Peer Groups to help young adults/teenagers.
If you would like to join Team Diabetes UK and take on the Great North Run to support people affected by diabetes, follow the link below.
