A day in the life with type 1 diabetes
Lis Warren was diagnosed with type 1 diabetes in 1965. Learn more about what a day in the life of a type 1 diabetes advocate and volunteer looks like.
5am Got up for the loo. Arghh, noticed my continuous blood glucose monitor (CGM, which is integrated with my insulin pump) is reading 14mmol and has been at that level for 2–3 hours. Aching and exhausted — suspect a virus is cause of unexpected high, which can signal an infection (or one coming — it’s like having a crystal ball!). Press buttons for a quick infusion of 0.7ml insulin to nudge number down. (My pump corrections calculator suggests more, but am trying to stay above 4mmol to regain awareness of low blood sugars (hypos), so err on the safe side.)
7am Alarm clock sounds, glance at CGM. Dropped to 8mmol so happy with that, but definitely feel poorly and wish I could stay in bed, but workmen expected at 8.00am…! No insulin taken for the few blackberries I eat as just not hungry. Decide I should make an adjustment to the tiny background insulin drip that continues 24/7 aka the basal rate. Experience has taught me I need much more when unwell. Set a four hour, 40% increase to see how things go.
8am Emails to read/answer, concert tickets and a CD to buy online (yes, some of us still use CDs), then update my ongoing review of the Hypo Awareness Restoration Programme (HARPdoc) for Kings, as they’re still developing the course plus I need to build up my ‘hypo prevention plan’! Now into my third week with this variant of the DAFNE course[1] — been a huge help so far. All on the course have had type 1 for decades — it’s common for hypo signs to diminish over time, with dangerous consequences. We’re being challenged to experiment with new ways of thinking to modify our usual behaviour and it seems to be working. Decide to write a blog about this one day, as it may well help others[2]!
11am Finally peckish so have some bread plus a few strawberries — in summer I use fresh berries as my ‘jam’ — they’re tastier, healthier, easily mashed plus don’t need to work out the carb content and insulin dose for a small number! Sweetened jam would be different.
12 noon Blood glucose now steady so will maintain the basal increase for a further 6 hrs. Need to order my online repeat prescription. My CCG is skint and after years of lobbying on their behalf with my Patient Participation Group, am mindful of the cost of insulin and although a bottle is ‘only’ around £15, I’ve always got that media thing DIABETES COULD BANKRUPT THE NHS in mind, so I’m really careful with diabetes supplies, never wasting a single drop of precious insulin. Sadly, media coverage has made many of us feel guilty for having diabetes: type 2s for causing their own illness and type 1s for costing too much. Not good.
3pm Relieved my blood glucose remains a healthy 5mmol so feeling chuffed. The insulin adjustments are working perfectly for once! After years of clinicians talking about good and bad blood sugars, it’s so easy to judge oneself using these readings. Poor self-esteem is common in people with diabetes. However, am grateful for my insulin pump, which allows frequent changes and tiny adjustments that aren’t easy with injected insulin regimes. My diabetes management is at its best in 50 yrs with the pump and CGM combination so feel very grateful for this life transforming technology J
4pm Walk to shops, eat a couple of dates first to maintain blood sugar as even small amounts of non-strenuous exercise can cause a drop and am happy the basal rate increase is appropriate.
5pm Invited to join a type 1 focus group on the proposed soft drinks ‘sugar tax’. Am for it as there are dozens of alternative hypo treatment options to sugary soft drinks, which are so bad for majority of youngsters. I accept, will enjoy the banter!
10pm Exhausted and need sleep before busy day with the Government’s Diabetes Think Tank tomorrow. Blood glucose is mid-range so now reduce basal rate to take account of 2 glasses of wine, as this can cause blood sugar to drop. Really don’t want my CGM to alarm at midnight tonight! All done, night night, zzzzz…
Lis Warren, co-chair of the Patient Experience work stream of the Diabetes Strategic Clinical Network for NHSE London and Service Champion volunteer for Diabetes UK. liswarren.co.uk
[1] DAFNE: Dose Adjustment For Normal Eating — course for people with type 1 to learn how to manage their diabetes well, to count the amount of carbohydrate eaten and match it with an appropriate dose of insulin.
[2] HARPdoc Kings College Hospital, in partnership with Sheffield, Bournemouth and Guys & St Thomas’s, are hoping to run more courses. If this goes ahead, these hospitals will be looking for participants who have a Gold Score of more than 4 to take part.
