24 Hours of Living with Type 1 Diabetes Decisions and Emotions

Decisions are currently being made around access to technologies (Hybrid Closed Loop — HCL) that will massively affect the lives of people living with Type 1 Diabetes. What very few people understand — and why would they if they don’t live with it — is the complexity and continuous work involved in trying to keep this auto-immune disease under control. The toll it takes on the emotions, sleep patterns and general health.

NICE guidelines around access to treatment in my experience are often made clinically regarding the following:

• ‘HbA1C’ (an average number of the amount of glucose in your blood). The lower it is, the better the perceived control
• ‘Time in range’ (the time you are between a, say 4 and 10 mmols target). The higher it is, the more it is seen you have things under control

What I don’t tend to see is: How much time and effort is going into trying to get things into some sort of balance? What is the impact on your mental health, sleep, general stress levels? And their impact on your long term health? Here, I provide a detailed — albeit slightly abridged — example of living with Type 1 Diabetes, through a 24 hour example. There are hundreds of variants on this and apparently 42 factors that can influence blood glucose, such as stress, hormones, illness etc. I use a continuous glucose meter (CGM) and am fortunate to have a tubeless insulin pump. Many have injections instead of a pump.

I’ll highlight the event, decisions, emotions and how I — as a patient who has read up on it — not an expert— understand Hybrid Closed Loop (HCL) might help. HCL is where the CGM and insulin pump communicate and adjust background insulin. You’ll get a sneak peak into the world of someone living with this — and be one of the few. You’ll read the complexity of decisions minute by minute, even on a fairly ‘good’ day. How exhausting and non-stop it is and how regardless of effort levels, the numbers go all over the place for various reasons.

(Info to non pump-users. I use the term ‘basal’. Instead of a long-term night injection, insulin pumps provide continual background basal. One can adjust this, to reduce or increase the amount of background insulin.)

Morning

5.45am: I wake, feeling muggy. I slept badly, due to correcting my sugars each time I wake — which is every 1.5/2 hours at the moment. [Emotion: I feel rubbish. How HCL might help: It would have helped level my blood sugars to some extent, so I’d likely wake feeling fresher.] My level is 7.2. But as it’s dawn, (dawn phenomenon, see previous overview blog), I realise by looking at my phone for the CGM results, that my blood sugar is rising and is now 9.3. [Emotion: Oh no, it’s going up quickly and I’m going to be high soon, just when I thought I was right. How HCL could help: Learns the patterns and adds insulin as my blood sugar rises — before I even have to look.] To prevent this going up, I add some insulin from my pump. I have to work out how much to put in — not too much, not too little and keep watching whilst drinking tea. [Emotion/ impact: I’m constantly watching if I want any chance of being ‘in range’ at the moment. How HCL might help: I won’t need to watch as much, as it will be doing it for me.]

6.15 am: I’m due to eat soon. So I add insulin from my pump, 10 mins before eating. I get caught up in some articles in the news and realise it’s 15 mins. So I rush to eat. [Emotion: Oh no, I might go low soon. How HCL might help: I’d still have to manually bolus for meals. But if I’m heading low, it could suspend insulin and take some pressure off. I won’t be able to entirely switch off.]

6.45am: Greyhound walk time. Before leaving, I check my blood sugar and reduce the basal rate on my pump, so I have less insulin in my body and my blood sugar goes up, ahead of me doing something that will usually bring it down (exercise). My blood sugar starts to rise anyway. I’m now 11.6. I decide to leave the reduced basal on for the walk. As I’m walking, I check my blood sugars regularly. It is now 12.4. I leave it as am walking and it should go down. Then it goes to 14. [Emotion: Frustration. What shall I do? I could walk faster, but the dog is sniffing (!) or I put more insulin in, else I’ll keep going up. How HCL might help: It would already — before I noticed it — be working on getting my blood sugar down.] So I decide to take off the reduced basal and increase the basal to add more background insulin and bring it down.

7.45am: I’m home but blood sugar is still at 14.3. So I put more insulin in. Wait. Not much change. I get on the exercise bike to try and bring it down. Not much move initially, but then it starts going down fast. [Emotion: Darn, it’s the down arrows and is now coming down fast — I’m concerned I’ll go low. How HCL might help: It may not get this high, as it would have been working in the background to help, but could also help prevent a low]. So I suspend the insulin to prevent a low, but inevitably go low, to 3.8. Eat some jelly babies. Then no move. Now I’m 3.4, so I eat more. Almost suddenly, it’s 9 and rising with fast arrows up. [Emotion: Heck. Now I’m going up — but I only had a few jelly babies, guv!? How HCL might help: Adds insulin in the background to help.]

I realise as I type this, both laughing and cringing at this light bulb moment— can you see how much constant watching, analysing, decision making and related emotions are going on in the first couple of hours of being awake? And all of this, while the rest of life goes on.

9.30am: I decide to mow the lawn, which can bring my blood sugar down, so I reduce my basal insulin. Still, I get it wrong, as am busy mowing. [Emotion: Just realised I blamed myself there when writing. Quite common. We blame ourselves (or others do) for blood sugars not being right. How HCL might help: Could be suspending insulin as I look to be going low, thus reducing chances of going low.] I eat jelly babies. All OK. But I have to keep checking my phone. [Emotion: I’ve cracked this. I’m on top of it ;-).]

10am: I sit down, have a coffee and relax — blood sugars are stable. [Emotion: Yey ;-) Breathe.]

Afternoon

12pm: It’s time to eat soon. So, I add insulin. (I’ve had to calculate amounts. See previous blog.) Sometimes I’m level, sometimes not afterwards. I’m planning a walk with a friend at 1.30pm, whereas I normally walk around 12.30. Sometimes my blood glucose rises when this happens and I realise how challenging it is, simply meeting people at different times of the day to my normal exercise routine. But today it’s level.

1.15pm: I reduce my basal ahead of activity, but as it’s not doing the spike it sometimes does. As I’m meeting a friend, I take extra sugar as don’t want to go low while walking. Still, it’s on the lower side as we walk. We pause while I eat jelly babies and a bar. [Emotion: I don’t want to be a nuisance. I should have sorted this. No, don’t blame yourself ;-).] After some time, it looks OK. When I get home, it is now 13.3. [Emotion: What???!!! Aaargh! How HCL might help: While on my way home and unable to focus on blood sugars, it would be working to bring my blood sugar down. Less frustration.]

I have a busy afternoon and forget to look. I realise by glancing from time to time, that it has been high a lot of the afternoon and despite my correction doses, is not going down. This could be for a number of reasons. [Emotion: Crikey, you get on with life and everything goes more belly up. How HCL might help: While I was busy, it may have reduced it in the background.]

Evening and night

After dinner I’m still trying to correct it. [Emotion: This isn’t good for me, being high over so many hours. Aware of long term implications of not keeping it in range.] Finally it comes down before I go to bed.

11.30pm: After an afternoon of correcting doses, the alarm wakes me as my blood sugar is low. But after some jelly babies, it doesn’t go up, so the alarm goes off again, just as I have dosed off. I eat more and then wake again. Blood sugar is 11. I add some insulin to bring me down. [Emotion: I’m fed up, exhausted. I want a good night’s sleep. How HCL might help: I possibly wouldn't have had the over-compensation causing me to go low, as it would have helped first. But if I were going low, would have picked it up and suspended insulin, ideally preventing my low.]

1.30am: I wake, look at my phone for my CGM. It’s 10.2, so I add more insulin. [How HCL might help: Correcting in the background.]

3.15am: I wake, look at my phone. Blood sugar looks OK. Go back to sleep.

5.45am: I wake and it all starts again. [Emotion: I’m shattered at the moment. And I know there’s technology that can help this. But decisions are being made about funding and I’ve no idea if and when I could get access to it, which is depressing. I feel like a pain to keep asking about it.]

What this highlights is the decisions and emotions each day. A Type 1 friend on a pump said this felt like reading a day in her life. Another friend and I decided that you either watch it a lot like I describe here — stressful and not great for lifestyle or mental health, but may get closer to targets. Or you live life — but blood sugars suffer. It’s a tough balance and something suffers, whichever you choose. Another Type 1 friend, fortunate to be on HCL confirmed, that this rang true. And now as an HCL user, “I realise with huge relief that I’m freed of all that hyperactivity of trying to second guess what the arrows are actually telling you.” (Arrows referring to blood sugars and the direction they are going in.)

In what I’ve written, I found 15 times when this condition had a detrimentally emotional impact. I’ve made countless decisions day and night, around things that most people wouldn’t spend a nanno second thinking about.

I hope this shows that a ‘time in range’ or ‘HbA1c’ number — while useful for stats and hospitalisations predictions — is not indicative of the full health impact on an individual — nor a fair indication of whether they should have technology to improve their lives. Just because someone reaches these numbers, doesn’t mean they’re sleeping like a baby, or living stress free. We know the risks and costs of mental health issues, stress, bad sleep. And in the short term, just because I’m not in hospital, doesn’t mean I’m not stressed out doing my best — or having situations that might bring me close to being hospitalised or worse.

Please, to those making decisions that will affect many lives — and I’m aware have a cost impact — and to those supplying the technology and looking at the costs of doing so: Please look at the broader picture of living with Type 1 Diabetes. Not everyone wants or is comfortable using tech or having it on their body. But please consider those who are desperate for this life-changing technology and doing their best coping and trying to improve their health— and thereby their short and long-term impact on the NHS.