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Life with diabetes

Living with diabetes can be difficult, but you shouldn’t need to put your life on hold. Here are stories from people who have learnt to adjust to life with the condition.

Muhammad cheering

Muhammad IsmailDiagnosed aged two-and-a-half

Appointments left me feeling small

To the outside world, Muhammad Ismail gave off every appearance of living a busy and fulfilled life. Living with type 1 since the age of two-and-a-half, Muhammad seemed to be managing his condition and coping well. But deep down, something wasn’t right. 

I guess when ‘not being okay’ becomes routine, it ends up being normal.

Muhammad says he now knows he was suffering from diabetes burnout, something he never knew existed. His diabetes care started off positively, thanks to support from family and a caring specialist nurse, who encouraged him to manage his diabetes well, but not at the expense of his quality of life. As his care changed over the years and he moved from children’s to adult services, Muhammad felt increasingly frustrated by attending appointments with healthcare professionals who he felt lacked empathy or a desire to find out what was really happening with his condition.

I’d got to a point where I could get away with measuring my sugars infrequently, guess insulin doses extremely well, have limited hypos and have an HbA1c of below 6.5. I could manage exercise well and only really struggled when I went out for a three-course meal and dessert at a posh curry place

He says: But I couldn’t really see the point of bothering. My hospital appointments felt pointless. I’d turn up and be asked for my diary. When I said I didn’t have one, I’d be told off. Then they’d check my notes, scroll through my history and say ‘well done’. I often thought that was more out of shock than praise. No one ever apologised for making me feel small, they didn’t try to find out how I managed my condition or ask if there was anything they could do to help me. So, I’d be given an appointment for 12 months’ time and rush back to work.”

Working in a hospital with patients who were struggling with their diabetes, or complications, also took its toll.

"There were experiences with my job as a hospital pharmacist that would make me wonder why diabetes leads to so many bad outcomes, it would usually end up with me asking, ‘why bother?

It’s a lot easier to hide from a condition than grinding your way through your daily routine only to see others suffering when you don’t have the ability to influence or change their outcomes in a positive way. That stuff is soul destroying.”

Read Muhammad Ismail's complete story
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Dr Shukrat Salisu-Olatunji

Keeping well during Ramadan

As a Muslim, Shukrat observes Ramadan and always makes the intention to fast as far as she can safely do so.

She is aware of the exemption from fasting for people living with a long-term health condition – such as diabetes – and appreciates still being able to partake in Ramadan in other ways, as is required. 

For Shukrat, fasting safely is about planning in advance, listening to her body and understanding that things won’t always go as planned.

She says: “Fasting with type 1 diabetes is a personal decision and there is a lot of work to do in advance of Ramadan to spiritually and physically prepare for the holy month. I make the intention and prepare to fast so that I can experience the month holistically but know that I have to listen to my body.” 

Making adjustments

Shukrat takes each day at a time during Ramadan. She will always make the intention to fast and have her sahoor (pre-dawn meal) but will listen to what her body is telling her as the day progresses and make the necessary decisions to keep fasting or break the fast if necessary.

She plans her meals and adjusts her insulin doses, as well as closely monitors her blood sugar levels and how she feels throughout the day. 

“If my blood glucose levels have been stable and I feel well then, I will continue with the day’s fast but if they drop too low or go high and I’m feeling unwell, then I know I need to break my fast.

"I understand that staying safe and well is the most important thing as I need to keep up with the other acts of worship in the holy month.

Shukrat, who is currently studying for a PhD in Health Sciences, is also a member of the Sheffield Diabetes UK Group. She says meeting other people living with the condition has also made a huge difference.  

“It’s invaluable to hear other people’s experiences of living with diabetes. Resources and diabetes education courses, like DAFNE, have been incredibly helpful and being supported with the skills and knowledge to manage my diabetes, helps me to fast safely.

"However, there’s also nothing like talking to someone else with lived experiences that you can relate with.  Having lived with diabetes for over 16 years, being part of the Sheffield group has been the first time I’ve been able to ask the advice of other people who know what it’s like to live with diabetes. That support has had a big impact on me.” 

Read Dr Shukrat Salisu-Olatunji 's complete story
Christine's story

ChristineDiagnosed with type 1 in 1971

Learning to live with diabetes in the 70s

After three weeks I left the hospital with a urine testing kit, protamine zinc insulin (a long-acting combination of insulin) and a glass syringe. To test your urine for sugar you had to empty your bladder around 30 minutes before you needed to test. You add five drops of urine and 10 drops of water into a test tube, and then a tablet.  If there wasn’t any glucose present the liquid went blue: I used to love it going blue as that meant I could eat some foods like chocolate. 

I only had one injection at that time. It was so restrictive, as my day revolved around when I gave myself the injection, and how my body reacted to the insulin throughout the day. I had to mix short-acting insulin and the long-acting insulin myself.   

Food labelling was non-existent - there were no foods that were labelled as ‘diet’, so my mum would have to buy the specialist tinned fruit in Boots or make the food up from scratch.   

I remember having a crib sheet of food. It consisted of red and black lines. The red foods were forbidden. How times have changed... 

Carb counting and multiple daily injections 

I moved over to four injections from two injections a day in 2000. I love being on four injections.  If I had my time again, I’d go straight on four injections a day, as it gave me the freedom to move my mealtimes around.  It fitted in with life in the office very well. I could now go to lunch at either 12 or 1pm, and I could go out after work.   

A few years later I learned to carbohydrate count and this helped me work out what my insulin needs were. So fewer hypos and hypers.  

During the 1980s and 1990s, diet food appeared on the supermarket shelves, like diet fizzy drinks and diet yoghurt. It gave so much more choice and gave me confidence that I wasn’t eating too many carbohydrates. Food labelling has improved so much. This too has given me so much more confidence to try new things. 

Read Christine's complete story
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AndieJanuary 2021

Getting back into a routine

When I wasn’t having to work, I wasn’t going to restaurants or squeezing in rushed meals when life got hectic. It was easier, because I could be more controlled about what I was eating, had time to check my blood sugar and take my medications at the right time. I must admit it’s got harder again now I’m back working at the school. If I don’t have time to heat up the healthy lunch I’ve brought in, I’ll end up eating in the school canteen (I’d never normally eat a white bread roll these days if I can help it!). 

Activity

When my daughter’s at her kickboxing class I’ll always still fit in even a 30 minute class, which is more than I was doing before. It’s also given me time to explore ways to take care of my health and put them into practice. 

Read Andie's complete story
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JonDiagnosed with type 1 diabetes aged 5

Diabetes didn’t hold me back in life

Having diabetes didn’t stop me doing anything. My mum and dad were great like that. They never said: “Oh he can’t do that because he has diabetes.” But sleepovers made me nervous. I worried about doing my evening injection and having breakfast the following morning and standing out compared to everyone else.

I’ve always been of the opinion that diabetes shouldn’t hold you back. You just have to take extra precautions. So always making sure you’ve got some hypo treatment on you and having your meter on you so you’re able to test your blood sugar. When my sugar levels are slightly raised, I run and join in with the children or just have a bit more insulin and test again.

I've been a PE teacher for 18 years now. In the early years when I was fresh out of university and still living in those uni ways, I think my blood sugar control maybe wasn't the best. But as long as you've always got hypo treatment on you, there's no reason it should stop you doing anything. In my office desk I've got three or four tubes of Dextrose and a massive pot I keep cereal bars in.

Family life

My wife’s a nurse and when we first started going out – even before I’d said anything – she saw my insulin pens on the table. I thought I’m not going to get away with anything in terms of my diabetes now. 

Both my boys see it as normal. If they see me as having something because my blood sugar’s going low, it’s just known as Daddy’s having medicine because he’s not feeling very well.

My oldest is six and a half and I'll get him to help me. So he’ll scan the sensor on my arm or put my carb numbers into my meter. He knows if Daddy needs some sugar to either get me a drink or go and get the tablets – he knows where they’re kept. He’s got a girl in his class who has type 1 diabetes, so he doesn’t see it as something different. 

I like to keep my children active and be involved. Exercising definitely helps me in managing my condition. I notice this when I'm not as active, for example during the school holidays when I’m not cycling to work.

Bringing diabetes into the open and dispelling myths 

With the changes in diabetes technology, whether you’ve got something on your arm you can scan or a pump that's much more visible, the conversations are there to be had. And a lot of students are inquisitive. When I talk to them, somebody might say, “Oh, my uncle's diabetic, or I know someone, one of my neighbours is diabetic” and this sparks more conversations.  

"I think there's still a lot of education needed. I did a lesson the other week and the member of staff that had prepared it had actually got their information about diabetes wrong. But we then had a productive conversation about it, which was good." 

Occasionally there are still the odd comments, like, “Can I catch it? How do you get it?” and I remember a boy in secondary school actually say, “My mum says you're diabetic because you've eaten too much sugar.” 

Read Jon's complete story
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