James’ Type 1 diabetes has led to many physical health complications, which have in turn impacted on his emotional health. Doing things he loves, like listening to music, and sharing his struggles with his wife and mum, helps him live his life to the full.
Living with Type 1 diabetes since the age of 12
“Without the support of my family and friends I’d probably be in a worse state than I am now. I do rely on the people that are close to me, and without them I’d struggle.”
James journey with diabetes
- James was diagnosed with Type 1 diabetes when he was 12.
- Has suffered from health complications since his early 20s and this has had a big impact on his emotional health.
- Uses different ways of staying positive, like listening to music and keeping active, and speaks with his wife and mum when he needs support.
- Has recently been offered counselling following an operation on his foot leaving him housebound for some weeks.
I was a typical 12-year-old lad, who was into football in a very big way and not keen on school. I was also extremely slim. In fact, ‘more meat on a butcher’s pencil’ was often the term used to describe my build. From the age of 10 I seemed to suffer from every illness going: colds, stomach bugs and infections – and this seemed to be the start of my downfall.
Two years later I was in hospital after collapsing on the football pitch, weighing just five stone. It was then that I was diagnosed with Type 1 diabetes. That’s brilliant, I thought, no more sweets and I’ve got to inject. To be honest I don’t think I realised how poorly I was; being so slight and frail with extremely high sugars in my urine and producing ketones.
Over the years I found it difficult to get my diabetes under control, even when I eventually received a blood testing device (which was the size and weight of a house brick). This helped a lot but if I had high blood sugars, the only way to get them down was by exercising. There was nothing like corrections with insulin – that didn’t arrive until much later – and I was only on two injections a day. However, I found that being physically fit and active throughout my life has helped me and my diabetes.
It was roughly in my late twenties that the complications started in my hands, with pins and needles that drove me up the wall. I had to undergo surgery for carpal tunnel syndrome and trigger finger. My hands were then bandaged for several weeks and this was followed by physiotherapy.
Another complication followed soon after that was probably even worse; my shoulder started to become stiff and extremely painful, and I was diagnosed as having a diabetic frozen shoulder.
"Once again I needed surgery to resolve the problem. I remember waking up from the anaesthetic and the pain being unbearable. It’s something I will never forget."
While at work one day a stone got into my shoe, but due to the lack of sensation in my feet I didn’t feel it rubbing against my toe.
This resulted in a huge blister that turned into a nasty foot ulcer. I was advised to give up work so my foot could heal, but I didn’t do this, as I loved the job that I’d worked so hard to get. Plus, financially I couldn’t afford to stop working. We tried everything to heal the foot ulcer, but just before my 40th birthday my toe was in agony and I was admitted to hospital. I was told the toe was beyond repair and had to be amputated.
After the surgery the consultants noticed a rapid change in the shape of my feet, however this wasn’t due to diabetes. I was diagnosed with a muscle wasting disease known as Charcot-Marie-Tooth, which meant very testing times ahead.
Not long after coming out of hospital, the next complication hit me – and hit me hard. I woke one night and could see black floaters in my eyes, which really panicked me. I ended up in eye casualty the next morning as I could hardly see out of either eye. I was informed by the consultants that I needed to let my eyes settle down in order to clear for laser treatment.
I eventually underwent a significant amount of laser treatment, but it was also recommended that I had a vitrectomy on both eyes. The procedure helped my sight a lot, but I lost my night vision and peripheral vision, too. However, this really was a small price to pay in order to keep my eyesight.
It got to a point where, if I don’t do anything, my emotional health could go down and I was fed up of feeling like it.
I’ve lifted my moods many times with music, sitting out in the garden, or speaking to someone and having a laugh. I’ll put music on, it lifts the mood, anything that will take you away from things.
"I’m always learning. Physical health and exercise can help emotional health and how you’re coping emotionally with things like anxiety."
Lack of sleep and pain cause me to have a bad day. It’s an individual thing really. Through medical complications and not working, it’s a huge challenge.
When I had my surgery, I developed sepsis. I became really poorly and asked for counselling but I wasn’t offered any.
I’ve just had further surgery on my foot and will be housebound for the next few weeks, which I feel really down about. This time I’ve been offered some support and I’ve already had one counselling session over the telephone. I’m only entitled to four sessions and I don’t see that as being long enough to make a difference.
Talking to friends and family
I think talking to people helps. I speak to my wife and my mum because they understand me better than anyone else. Without the support of my family and friends I’d probably be in a worse state than I am now. I do rely on the people that are close to me, and without them I’d struggle.
If they think I need to go to the doctors, they’ll tell me. I probably know the answer already, but I trust my wife to tell me that I need to go and sometimes I need that.
You’re always learning about Type 1 diabetes. If I’ve got a main issue I’ll ring up the diabetic nurses. My mum’s always on the end of the phone, because a lot of people work and so you can’t ring them. During the summer the neighbours are around so I’ll go and speak to them. There’s not really any method to it, it’s just trying to do something at the time because you can get into a rut.
"I’ve never asked for help and regretted it. I think talking to people helps, talking to anybody helps."
I never used to suffer with things like anxiety which I suffer with now, because you’ve got so much time to think about things and you think and think and overthink and I find it very difficult.
One day you’ll be over the moon, and the next day you’re not. I think it’s one day at a time, you take each day as it comes.
"Health and happiness run hand in hand in my eyes. If you are healthy, or trying to be, you’re happy."
I always try and do bits to keep my spirits up, listen to music, go out, whatever you can do to lift your spirits up. My neighbours and I always have a laugh, humour does help people through and I use it. I’ve always had that personality side to me and I think my dad taught me that.
I think you’ve got to live life to the full. Exercise, blood sugars, eat in moderation, be vigilant with it. If I could reverse Type 1, then I wouldn’t think twice about it, I would do it. So, be mindful, blood test, exercise and moderation.