32 weeks and counting: Food
Mum: I felt strongly that we must manage the condition as best we could and was emphatic about three aspects – food and meal times, following the rules and involving Sarah as much as possible in the management of her condition.
Me: I wasn’t aware at diagnosis that this would be the start of a very different relationship with food. On a one injection a day routine, with the requirement to eat set amounts of carbohydrate at set times of the day to try to maintain blood glucose levels on an even keel, choosing what and when to eat, eating for pleasure or eating to satisfy hunger were no longer the considerations.
It was made very clear to me while I was still in hospital post diagnosis that sweets would be off limits. The Friends of Macclesfield hospital had received donations of Easter eggs to distribute to children spending Easter Sunday in hospital. All the other children chose their eggs. I had a nurse choose one for me. It was a very specific choice – a chocolate egg with a hole cut in one end and edged with icing decorations. If you looked through the hole, you saw a spring scene with rabbits, grass & trees made out of a combination of cardboard and icing sugar. It was placed on my bedside locker and I was told very clearly that I was not allowed to eat it. The picture of that egg has stayed as one of my “snapshot” memories – it brought an odd mix of emotions, from awe at the crafting to sadness from the “do not eat” instructions.
Dad: It was a testing time for Sarah. The Easter weekend came soon after her readmission to hospital. Sarah was on a general children’s ward and the Friends of Macclesfield Hospital kindly brought in chocolate Easter eggs for all of the children. Sarah had a specially decorated egg positioned at the side of her bed and was told that she could look but not eat it. Sarah still remembers how she felt. She was on a regime of having just one injection of insulin a day – a regime that continued for her first three years or so as a type 1 diabetic – so her eating had to be managed around this fixed supply, limiting her intake of carbohydrates strictly, so as to minimise the peaks in her blood sugar levels. Today, there is more acceptance of adapting to different patterns of eating and using booster doses of insulin to deal with the effects. The Friends had kindly intentions but it was a harsh experience for Sarah.
We tried to learn the carbohydrate content of various foods so that we could calculate what Sarah would be able to eat at each meal, given the specifications of her daily insulin injection. The nursing staff tried to educate us in all these matters. I fear we were not very good students. Under the stress, we kept forgetting details and needed to ask the ward sister to go over the details again: Sister showed her impatience with Margaret more than once.
Mum: Meals were a big learning curve initially. Food portions were counted as ‘lines’ and you were allowed a certain number for each meal, which took some time to work out. But it did result in our assessing what constituted a healthy diet for the whole family. We all had the same food, ate more vegetables and fruit for dessert.
Dad: We instituted a strict routine of eating meals at the same time each day, a routine we followed whenever we could throughout the time when Sarah lived at home. We ate supper at six o’clock because that seemed to fit in well with Sarah’s routine. Whenever my commitments at the University permitted, I would travel home to have supper with the family at that time, though I would then usually retire to my study to do some more work. This daily routine became habitual for us all and Margaret and I still like to have supper early when we can. And we chose simple, unadventurous meals, for which we could measure the carbohydrate content confidently.
Of course, Sarah was the one who carried the real burden of the condition and she dealt with it brilliantly. She fully accepted the need for the injections and the control of diet. We provided eating treats from time to time, a vital aspect of coming to terms with the condition. All too often, in the early years, the treats were special diabetic products, diabetic chocolates or diabetic jams on bread. They were not like the real thing - indeed, in those days, the taste was often pretty awful. We made good progress in managing her diabetes but her condition frequently fluctuated unexpectedly and a problem requiring a quick response could occur almost at any time.
Me: On one injection a day, food could not be variable or spontaneous. Even when I eventually moved to two injections a day, insulin was not sufficiently fast acting that you could decide to inject to accommodate varied food intake. I had to eat fixed amounts at set times throughout the day. Each meal or snack allowed a set number of ‘lines’ which equated to 10g of carbohydrate. I was involved in learning to count lines from very early in my diagnosis. I was on a 4:2:4:2:4:2 diet where I had 4 lines at breakfast, lunch and dinner and a 2-line snack mid-morning, mid-afternoon and before bed. It didn’t matter if I wasn’t hungry – I had to eat. It didn’t matter if I was hungry - if it wasn’t a scheduled time for food, I could not eat. In the early years you ate to feed the insulin dose you injected. Increasing the food or carbohydrates for a special treat was out of the question because you couldn’t administer a booster insulin injection as you can choose to do today: insulin did not work fast enough.
I hated my mid-morning snack. The timing of it could not be varied and it did not coincide with the morning break at school. I had to eat my snack – usually a chocolate digestive biscuit wrapped in paper - in lesson time. The response that I have had when recounting these feelings to others in adulthood completely misses the point. Their reaction was to think how lovely it must have been to be able to eat a chocolate biscuit in class time. My feeling was shaped by my having no choice; it wasn’t a treat but a daily requirement which caused embarrassment. I was aware of feelings of envy from my classmates and I hated being different. In class, we sat facing forwards at individual wooden desks with lift up lids and I would quietly lift up the lid a few inches when the teacher was writing on the blackboard, trying to take bites unnoticed.
I also had to eat a snack before school PE lessons. Mum included a small rectangular metal hinged tin with my PE kit. She lined it with greaseproof paper and placed some squares of chocolate in there to be eaten before PE lessons to help ensure that the increased activity would be countered by the chocolate to help prevent a low blood glucose level. At least with the commotion of getting changed I could eat a couple of squares of chocolate unseen.
I was trusted from a young age to be able to manage counting my lines. I remember the first unaccompanied birthday party I attended. I was 8 and it was a party for a boy from school. A trestle table was laid out in the middle of the room in which we ate with all the food in the centre and chairs for us, up and down both sides. I remember sitting at the table furiously concentrating on what I could choose and counting the lines quietly in my head. It doesn’t take many sandwiches, crisps, pineapple (on cheese and pineapple sticks), chocolate finger biscuits or fairy cakes to exceed a 4 line or 40g carbohydrate allowance. I remember helping myself to more than my fair share of the cocktail sausages as they were counted as free foods with no carbohydrate. I was very grateful in the 1970s that birthday cake was wrapped up in a napkin to take home from a birthday party, otherwise a slice with icing could well have accounted for my 4-line meal allowance by itself!
Mum was very concerned that I understood the importance of matching food and insulin from an early stage; that I would have full understanding of what I was eating and would be confident to question adults if I thought they had got it wrong. I remember one of my annual inpatient stays in Pendlebury Hospital. There was a day room to the side of the ward where they served the meals. One lunchtime when Mum was visiting me, she was aware of a child who had not been served pudding: when the girl tried to leave her seat to explain this to the nurses, she was told to sit down. I believe Mum intervened. She was certainly adamant that I needed to understand the importance of persisting with speaking up if I was aware that something I should have been given had been forgotten. Her concern and insistence that I had to take responsibility for myself has remained with me throughout my diagnosis.
My grandparents lived in Buckinghamshire and because of the distance to travel to visit us in Cheshire, they would stay for a number of days when they came to visit. My grandmother would bring up a supposedly secret stash of chocolate curly-wurleys and she would pass them over to my sister in what I assume she felt was a surreptitious manner soon after arriving, encouraging her to take them straight upstairs to her bedroom. I have no idea whether she honestly thought I was oblivious to the exchange but I wasn’t. I hated the subterfuge but didn’t want to say anything to limit embarrassing either my sister or my grandmother. Type 1 care was all about the practicalities with no encouragement to consider the emotional impact. So, just as in the hospital setting, this reinforced an expectation of deprivation – I should not expect to have the same choices and unfettered access to food as others.
Deb: These furtive gifts of chocolate caused me immense guilt. It is a shame that none of us were able to stop and talk about our feelings. However, I also loved the attention and enjoyed the fact that my grandmother wanted to bring treats up for me. Chocolate had become a very high status food due to the controlled conditions surrounding it. I was aware that some foods were kept to help deal with Sarah’s low blood glucose levels and I justified in my mind that our grandmother’s gifts were my equivalent.
Me: On the occasions when we travelled to visit my grandparents in the South, my grandfather helped to lessen some of my feelings of deprivation. He was an avid gardener and grew tomatoes in a large greenhouse. He would present me with a small wicker basket and encourage me to go and pick the tomatoes he grew. I would be picking them for lunch but not all of them would make it to the table. Although not really carbohydrate free in the quantities I would eat them, they, like the birthday party cocktail sausages, tended to be counted as “free” food. To this day I love the smell of tomatoes in a greenhouse and the recollection that he found, whether consciously or unconsciously, a food treat that I could enjoy.
This rigid dietary control started to relax for the first time nine years after diagnosis. Towards the end of my family’s three year stay in Connecticut, USA, I took part in Dr Bill Tamborlane’s insulin pump research at Yale University Medical School. My six month trial of an insulin pump meant that now permanently attached to a source of quick acting insulin, I had the ability to give a dose of insulin at the push of a button to allow a little more flexibility in both when I ate and the quantity of carbohydrate that I ate. Carbohydrate counting was still required, but rather than being given a fixed amount of carbohydrates to eat at set times of the day, I was now given a ratio to use to determine how much to inject based on judging the quantity of carbohydrates that I was eating. I remember the first time I queued up to buy a chocolate chip cookie in the high school canteen for a treat after my usual brown bag packed lunch. I was also able to go to sleepovers with my friends and eat pizza, even if it was later than my usual mealtime. This was a huge power shift that gave me a voice, for the first time, in food choices.
Over the years since my diagnosis, the delivery methods for insulin, the speed of its absorption, and the monitoring of blood glucose levels have improved which allows greater opportunities for food choice. Has this led to an easier relationship with food?
Not really - food consumption is complicated.
The general starting point today for those managing type 1 is to identify how much insulin is needed for a set amount of carbohydrate to maintain blood glucose levels in a normal range. However, once you have identified what you consider to be the right formula for your body, eating is not as simple as blindly applying this ratio to everything you eat. There are additional factors to consider:
Sensitivity to insulin varies according to the time of day. I generally need higher doses of insulin in the morning than I do at lunchtime, to cope with the same quantity of carbohydrate.
Where I inject insulin affects absorption rates and so I have to deal with variability in the ideal time to wait between injecting and starting to eat.
The size of dose will affect both when the insulin peaks and the duration of its action time in your body. Once injected, insulin will not just sit and wait to start working until food is absorbed. So, managing the gap between injecting and eating is critical. Start eating too quickly and your blood glucose level will end up high; wait too long to start eating and you will have to deal with a low blood glucose level.
The glycemic index of food (how rapidly food will raise blood glucose levels) must also be factored in to decisions about how far in advance of eating to inject. General guidance recommends that you inject about 20 minutes before eating but this will need adjusting based on all of the points above and what level your starting blood glucose is, at the time of injecting.
You need to estimate the carbohydrate you are eating in every meal or snack and use an appropriate ratio to calculate the insulin dose you think you will need. This ratio will be unique to you and the time of day - it may well be different for every meal. This is not a fool-proof calculation. The actual amount of insulin that your body will require may be affected by many factors outside your control and you have to take account of these factors alongside your food choices.
The higher the fat content of a meal, the more likely your blood glucose is to stay raised for longer after eating.
Protein has the ability to increase blood glucose levels, when it is eaten without carbohydrate. However you are not generally encouraged to take account of protein in calculating the amount of the injection.
Pump therapy in the 1980s gave me more choice and flexibility but I still wanted to feel good. I hated both the feeling of a prolonged low or high blood glucose level and so if I struggled to identify how best to inject for particular foods, I would often decide that I was not sufficiently interested in a food choice to want to persevere.
Entering different stages of life has also affected my approach to food. I wanted a family and when planning pregnancies in the 1990s, I was very aware that poorly managed food intake leading to greater variability in blood glucose levels would affect the development and health of any baby I carried. I spent three months, prior to each pregnancy, fine tuning insulin doses required for the food I intended to eat. This may seem an extreme approach but I was not on an insulin pump at the time and continuous glucose monitoring was not on the scene. The words of a science teacher when I first started secondary school proved useful in determining my particular approach. She drummed into us the importance of changing only one variable at a time, in any experiments we did, so that we could be confident that no other variable was affecting the results. Throughout the nine months of pregnancy, pregnancy hormones would often have an erratic effect on my blood glucose levels and the best way of working out how to manage this was based on having confidence that the food I consumed had been rigorously tried and tested with insulin dosing prior to the pregnancy, so that any blood glucose excursions were more likely to be as a result of pregnancy hormones. Taming the impact of one variable and learning from the results is always easier than taming the impact of multiple variables.
Trying to manage the effects of hormonal changes through the perimenopause, and trying to understand the best way of dealing with often quite extreme fluctuations in blood glucose readings, led to a further period of quite strict self-imposed food control. Whilst experimenting with dietary recommendations for women at this stage of life, I adopted the same mindset as in pregnancy. Isolating the impact of one variable – perimenopausal hormonal changes – was easier when not also dealing with the complexities that would come from making frequently changing food choices.
Neil: What has struck me the most in living with you is the impact that non-routine food settings can have on you and how difficult it is to find a reliable solution to managing this. Eating out can cause problems: estimating carbohydrates, predicting when food will be brought to the table, knowing when best to inject, is often difficult. When food has taken an hour or 90 minutes to arrive and you have resorted to eating glucose tablets to deal with falling blood glucose levels to counter poor restaurant service, it is understandable why some of these experiences have left you less enthusiastic about eating out.
Me: That’s not to say that we haven’t had some interesting holidays experimenting with very unknown foods. The one that stands out was an off the beaten track lunch of dim sum on a trip to Hong Kong, where no-one spoke any English and we made our food choices by pointing at dishes on a trolley wheeled between tables, with little idea of what was in each one. There are occasions where the benefits and thrill in choosing to be adventurous make the risks worth accepting but it is not how I want to manage my normal day-to-day food intake.
The medical profession’s attitude to managing food choices with type 1 is much more relaxed these days than at diagnosis in the 1970s. No food is off the table, you just need to determine how to inject for it. However, with all of the above considerations I tend to be happy sticking to what many might consider an unadventurous diet. Having been diagnosed in an era when sweet foods were actively discouraged, my tastes have undoubtedly been conditioned by the rigid dietary restrictions that were followed in my first nine years of diagnosis. Having found foods that I enjoy and can reliably inject for, I usually do not value experimenting with new dishes highly enough to warrant the impact of high or low blood sugars.
