Karen's story: managing a long-term complication of type 1 diabetes

I remember being really thirsty and not being able to stop wetting the bed and not knowing what was up with me. Then I have a memory blank, and the next thing I recall is being in hospital and being given an orange to inject into. I was told that I’d have to do this every day for the rest of my life, but no-one ever explained why I’d have to do this every day for the rest of my life!

I was told I couldn’t eat baked beans or bananas, because that was the advice at the time, but no-one ever explained why. Nothing about my condition was explained. I moved from Ireland to the UK ten years after my diagnosis, and that was when I first started to get more of an understanding of diabetes.

When someone finally did explain what diabetes was, I felt really hard done by! I thought, ‘so I can’t do this, and I can’t do that.’ Injecting never bothered me. It bothered other people more. I thought, ‘well, I need this to stay alive.’ People would sometimes stare or even call me a drug user, but it never bothered me at all.

When I was young, it was hard because I couldn’t understand why I couldn’t eat sweets or have sugary drinks. God bless my mum, she didn’t understand either. So, Mum never went out of her way to give me sugar-free drinks. She used to bake cakes and would never tell me I couldn’t have any. When my sugars went really high, the GP would just come out and give me a big dose of insulin.

I probably wasn’t the best at taking care of my diabetes in my teens. I always took my injections, but I did drink and eat whatever I wanted. It wasn’t until I got into my early twenties that I decided I needed to pull my socks up and look after myself better.

I got married in 1998, and I’d been sick a few times that year, but I didn’t think anything of it. The following spring, I was sick every day for about three months. I was in and out of hospital and was even referred to a psychiatrist because they thought I was making myself sick because I was traumatised by my mum’s early death.

Late that summer, when I was 25, a doctor told me he thought I had gastroparesis. I’d never heard of that, so when a test confirmed it, I was relieved to know that my illness wasn’t in my head.

Gastroparesis a long-term complication of diabetes that can be caused by fluctuating blood sugars causing nerve damage (neuropathy). Damage to these nerves can result in gastroparesis, where food isn’t moved out of the stomach as quickly as normal. It’s thought to be the result of a problem with the nerves and muscles that control how the stomach empties. Symptoms of this can include bloating, constipation, diarrhoea, having pain or discomfort in the upper part of the tummy, and feeling or being sick. Having gastroparesis means your food is being digested slowly, and at unpredictable times, which can affect your blood sugar levels.

When gastroparesis flares up, it can last for anything from 24 hours to six months.

Living with my complication

When I was diagnosed, the reality of what gastroparesis actually is hit me. I had a really nice nurse at the time, the sort of nurse who would get down and hug you, and she said, ‘you’ve got this complication, it will change your life, but you can’t let it ruin your life.’

I remember sitting on the hospital bed thinking, ‘is this how I’m going to feel all the time? Am I going to be sick all the time?’

For the past eight years, I’ve had botox injected into my muscles every ten weeks. The botox kind of ‘paralyses’ the muscle, to prevent it from clamping shut.

Balancing diabetes and gastroparesis can be a nightmare, particularly if you’re being sick and are going hypo. Sometimes you can suck a sweet, or I’ve tried glucose gel, which works quite well. When I first got gastroparesis, I stopped eating healthier foods, because they took longer to digest. Running the risk that what I ate was going to get stuck in my tummy, I didn’t want food that was going to keep me fuller for longer!

I love vegetables and had previously had a healthy diet, but I gave up eating dark green vegetables because I’d experience a cramping in my gut. I didn’t really eat brown bread, either. Then if I did eat those sorts of things, because they were new to my system, digesting them was quite uncomfortable. For years, my diet wasn’t great.

In January 2020, a comment from the doctor who was giving me my botox made me realise I needed to lose a bit of weight and get fitter. I Googled a lot and looked at calories on packets and worked out how thing affect my system. Then, I started off slowly and gradually increased fibre and fruit in my diet.

The first 21 days were difficult. At one point I thought, ‘I just need to stop this.’ But then I told myself to keep going, that my gut would get used to these changes. And it has. It’s been really good.

It took about a month for my system to get used to it. Thanks to my botox treatment, if I have a sandwich now, I can choose brown bread over white and I eat loads more fruit and vegetables. I also try not to take it to the point where I’ve eaten too much.

Getting active

I also started walking more. I do about two hours a day now. I leave early, then do a lap around the hospital where I work, which is about a mile. I often have to go to the pharmacy at the other end of the hospital, so that involves more walking. Then at lunchtime I get a 20-minute break so I then do another lap, and then I do two in the evening, which is nearly two miles. Because I’m only doing it for 20-25 minutes at a time, it feels easy. And while I found going to the gym made me have bad hypos, walking doesn’t make my sugars drop as drastically, so it’s more manageable for me.

Recently, at my annual diabetic review, I discovered my HbA1C had gone from 59mmol/mol to 54. I was so made up! I’m hoping it’ll be even lower at my next review.

Changing my eating habits – I don’t want to call it a ‘diet’ – and making lifestyle changes have made such a difference.

I’m married, I have two sons, and I work three days a week in an NHS admin role. I used to get stressed that my gastroparesis would mean having to take time off work. The stress, in turn, affects the gastroparesis. I eventually got to the point where I thought, ‘I’ve got this condition. I didn’t ask for it. There’s nothing I can do about it.’ I just had to accept it! Once I realised that, I stopped getting so stressed. Now, I haven’t had to take sick leave for nearly two years. I know it will flare up, I will end up in hospital every so often, but I just have to ride it out.

Having gastroparesis puts a lot of pressure on your marriage and your life. I’d be throwing up by my husband still had to go to work and I had to get the kids to school. It was hard at the time. My kids are older now, nearly 17 and 19. Now that they can look after themselves, I don’t stress as much. It was harder when they were younger.

As I’m getting older, I think I appreciate life more. I realise my situation might be a bit bad at times, but it’s not the end of the world.

Gastroparesis has been really tough, but having diabetes has never bothered me. Obviously I’d rather not have it, but it’s never affected my mental health. It’s just something that I’ve got and I feel that there are other people out there with worse illnesses than diabetes. My view is that you can’t live like it’s the end of the world. I’ve got diabetes, I just have to suck it up.