For diabetes awareness month I thought I would set my colleagues, who do not have diabetes, a little challenge, to live with type 1 diabetes (T1D) for 5-7days. I was unsure who would want to participate and also wondered how I would actually really feel knowing others had access to my live continuous glucose monitor (CGM) data.
Surprisingly quite a few of my colleagues were interested in taking part and I limited it to 4 participants, all senior diabetes specialist nurses (DSN).
I sent details of the challenge to them so they were aware of what they were voluntary taking part in, including potential alerts whilst sleeping, and emphasised that if at any time taking part was causing them additional stress or ill health they needed to withdraw from the challenge.
The rules: Test blood glucose (BG) before eating, driving, exercise and any other time they felt it may be necessary. They would use my live CGM readings to make decisions; if about to drive and BG shows 4.4mmol/l, they would need to treat accordingly to drive. Of course my actual BG would not change due to decisions they made, it was allowing the opportunity to respond to the numbers like I have to.
‘You will need to check BG with every meal and carbohydrate snack/drink. You will be required to carb count and calculate your insulin dose, including any corrections you may need with the BGL reading presented to you’.
Living with T1D requires continuous decision making throughout the day and those living with T1D often feel the burden of self-management. Having interruptions, making decisions, counting carbs, adjusting insulin and factoring in day to day life can have a negative impact on the person living with T1D. This in turn can impact self-management and how the person with T1D responds to their own BG readings.
Many health care professionals have limited understanding into living with T1D and therefore may become upset, frustrated or at a loss with how they can help. They may lack insight of the day to day interruptions and understanding why injections or BG testing can be forgotten, or why some do not bring their meter to clinic. For me, sharing data is the same as giving someone access to my bank account. They can see what I have been doing, my eating habits, if I have missed insulin doses, forgot to test my BG, and may draw on their own conclusions as to why I have had a high or low BG.
Aim: To enable a greater understanding of living with T1D, 24/7, and gain insight into potential issues faced
The challenge: Initially I was extremely nervous to be sharing my CGM data with my colleagues. Whilst I know they are very understanding, there is always that feeling of being judged.
What if my BG is consistently high? What if they disapproved of my carbohydrate intake? What if they kept having to treat a hypo, if it interrupted their sleep or working day? What if they thought I was a ‘bad’ diabetic and shouldn’t be a diabetes nurse?
But, what if they gained a little more insight of living with T1D? What if it helped them to pause and reflect during a consultation?
For the record, I am so very impressed at their level of compassion towards those living with diabetes, so at no point did I feel that they needed to improve this. Agreeing to take part in this just shows the type of people they are; always wanting to support others and look for ways in which we can all enhance our skills and knowledge to support those living with diabetes.
The day before the challenge started I sent a little message to the group;
‘Good morning. Unfortunately your latest blood results confirm you have T1D….please start injections tomorrow as per the information sent…please carry your preferred hypo treatment…test BG before driving as per DVLA guidelines…’
Day 1: This was exciting and scary all at once. All the ‘what if’s.’
I was off work and needed to go into the city center, a little shopping trip. My CGM alerted me to a potential low after showering and the first message came through, ‘thank goodness I’m not driving, I’ve just had a banana.’ Not long after this I was alerted to a hypo which required everyone to take fast acting glucose, regardless of where they were.
Later that day I had another hypo along with messages ‘are you ok…eat something sweet…’ Two hours later another alert followed by messages, ‘are you ok, you’re dropping again.’ 3 hypos in 1 day! I hadn’t had a hypo in weeks, to be hit with 3. Did my body do this on purpose to throw some excitement into this challenge? I hope not! Please don’t say I’m entering ‘hypo season,’ how embarrassing! The third hypo that day really got me, of course I said I was ok, but I did worry when I started to feel ‘weightless.’
Wow, what a crazy first day. It wasn’t until later when I realised how exhausted I felt. I was so pleased I was off work the following day.
Day 2: I forgot to bolus as was on the phone sorting an imminent house move. Of course this caused a raised BG and plenty of alerts.
My colleague advised that she had missed a lunch time dry injection, as was in a meeting and had a dress on, so injected once in the car. A great insight into the difficulties faced, some that may not have been considered.
Days 3-7: These days were pretty uneventful, a few meal spikes and overnight highs, alarming throughout the night. One of my colleagues advised she got up early hours in the morning to take a correction. This involved going downstairs & working out how much insulin she would need along with giving a dry injection.
Reflection: This challenge has been a learning curve for all involved, including myself. I realise how I have become comfortable with letting my BG run higher, even though I have a CGM to alert of hypos.
During my time as a student nurse I had to join a new team for each placement and always worried about having a hypo, so would try and keep my BG higher. I imagine, although I have settled in my new role, there is still a fear of having a hypo in front of others.
My colleagues really are awesome! They respected the fact that I live with T1D 24/7 and apologised for ‘checking in’ with me if my BG was going low or high. I did not mind receiving messages from them, it was actually really kind of them.
The care and compassion they showed throughout this challenge were admirable. I would highly recommend for other health care professionals to take part in a similar challenge.
Reflections from 2 participants
Having worked as a HCP in diabetes for 17 years I hoped I had a small insight to what it might be like living with diabetes, having tried to support people with the condition, listening to them explain what it is like and the struggles they face as well as the positive side of diabetes.
There is an awful lot of remember if you have Type 1 diabetes and you have to think about everything before you do it. Suddenly what you are eating becomes ‘how many carbs are in that, how much insulin do I need, is a correction dose required?’
The first day of this challenge the CGM alarmed three times due to hypos. This was a real reality check into what it can be like to have hypos and having to treat them. My teeth felt horrible after all the sugar. During one of the alerts, I was driving and needed to pull over as the alarm would not stop. These all added extra time out of my day which I didn’t really have. But this is how it really is and made me think, this is real for my colleague and other people with T1D.
BG testing: One night I worked late and jumped in my car to drive home and realised half way home I hadn’t tested my BG level. I did this the following day too! It made me realise how easy it is to miss this test because of life being busy. It may only takes a few minutes, but it’s those few extra minutes when you are busy or tired. I advise people all the time to check their BG before driving, and now understand how easy it can be to miss this vital test. What if I had been too low to drive in addition to being tired?
Injections: This was not too bad but I did reuse needles a few times which became uncomfortable, so I ensured I changed them every time. There were several times towards the end of the week, the weekend mainly where I tend to graze more, and forgot to inject before eating. I injected in front of colleagues in research, one was a new colleague, so that was interesting explaining what I was doing. I also injected in a room with people with T1D, but no one was watching. I explained to them the challenge I was taking part in. I was nervous though, doing the injection in this group, as I did not want to make light of what they live with day in and out.
CGM: I liked being able to see what your BG levels are doing and can understand why people would want to use this. I think, if I had T1D and did not have such device, I would be checking my BG levels a lot and would probably not sleep well. Fascinating seeing BG levels at the touch of a button. I wouldn’t want to have diabetes and insulin without this software as it makes management so much easier. I t enabled planning; i.e. if BG is falling, glucose can be taken to prevent further drop
This experience has heightened my awareness of all the extras you have to take into account when you have T1D and that you can never really switch of from it. There is a lot of stuff to carry around and always have with you. I do think it might stop me doing things, but I hope not. It really is part of who you are.
I have only had a very tiny insight this week into the condition, I will never truly know what it is like and how hard it can be.
Thank you to my colleague for sharing her BG levels with us and for helping us understand a little more of what it is like to live with T1D. I hope it will help me be a better DSN.
Thank you to my colleagues who kindly took part in this challenge. You really are amazing!