I got ‘O’level Maths at school; at least I have the certificate to say so. It was 1979 and yes I am that old; I got a grade A too. I got my sciences as well – good grades. I’m also a nurse; one who is supposed to be a lead for informatics but don’t be misled – I’m no nurse geek. That leads me to believe, at least on paper, I’m reasonably competent in that sort of ‘mathy-sciencey’ sort of way.
More recently I wasn’t so sure as my story, this time, is about how very complicated it is to manage diabetes.
A few months ago I decided it was time to be brave and take the plunge; I asked my Diabetes Specialist Nurse (DSN) if I could borrow a Continuous Glucose Monitor (CGM). A significant step, as it allows you to see what your glucose levels are 24 hours a day and helps you to assess whether the basal (base amount) of insulin you are getting via your pump is about right – so far so good. My DSN is a real star; we don’t have CGMs where I get my care so she had to ask for a favour from the rep for me to loan a CGM. I think, (unfortunately – you will see why) she was using me as a ‘test’ patient. I suspect she thought ‘lets see how anniecoops gets on with this’.
In my case the CGM is a small electrical sensor that is inserted into tissues and wirelessly transmits glucose readings to my insulin pump – with me so far? Here is a picture of the exact one and my pump:
I’ve learnt to use the pump well over the last three years and have gradually adopted most of the things it will do and added them in to the management of my diabetes. The pump ‘stuff’ (tubes etc) gets changed around every 3 days and the sensor lasts 6 – still OK? The results from the CGM via the pump can be seen on a computer programme that shows your readings over the period of time that they were taken. In this way you can see what’s been happening over time. A bit of a miracle for me who was brought up with urine testing tablets (but that’s another story).
Ok, so off I go; I have to say having taken the plunge I was vaguely excited! I had an appointment with my DSN and the CGM lady to get going. The transmitter is small but it is VERY dependent on the correct insertion of the sensor. The sensor even has a special ‘insertion device’ like this:
It looks harmless and useful doesn’t it – don’t be fooled! The technique for inserting the device is 16 steps long (I’ve just counted from the manual they gave me). I could go on……. but I feel too traumatised.
What happened over the next two weeks was upsetting as I couldn’t manage to do the inserting myself and being of stoic nature (see my previous blog) I was so determined to go alone and in doing so have wasted 3-4 sensors. Physically inserting the device is really hard as there are so many rules about where it goes and how to do it but essentially I needed to put it somewhere where I could see it to remove the attached transmitter for showers etc. In my experience with my pump your tummy is the best area but my boobs were a major barrier for me to see anything!
The upshot of it all is that I am now waiting for some more sensors and this time I am clear that I can’t do this on my own. Maybe I can over time but I’m going slowly for now.
Hopefully it doesn’t stop here as once I have the results perhaps then I can use my ‘mathy-sciency’ sort of skills, as we will have to interpret the results; make sense of patterns, ratios, timings and hormones. There is also the dreaded ‘dawn phenomenon’ (don’t ask). Perhaps then I will impress the DSN with my skills…..
So, if anyone ever tells you managing diabetes is a piece of cake then punch them on the nose for me. I struggled with the technology and we still have the maths to face, although I really do think I’ll be OK with that…….
If we are going to use all of the devices that are available to help people help themselves then we really do need to think about skills and what sort of help is available. When I couldn’t get the sensor to transmit the most helpful people were the CGM helpline team who were calm and unflappable. My DSN was nearly as under confident as I was – bless her (I guess I was her test patient). If we are going to use all this technology stuff we need to think carefully about how we help patients to understand and be self sufficient, if that’s what they want; I certainly do – it really is very complicated you know!
How frustrating. The technology will I’m sure get more user friendly, but this made me appreciate the simplicity of managing my random, but much less complicated, diabetes. Does feel like at the moment this stuff needs a bit more development before it could be more mainstream. Good luck with it.
You are so right- its complicated as a mum of a boy with T1 and it’s complicated as a nurse! Someone told me 3 years ago that Diabetes management is a dark art- they weren’t wrong!
Hi Annie – real life summary of you managing the device, admiration to you! I think what you have written will encourage patients to persevere & seek any advice they need if they experience any difficulties as you have described.
If you struggled with your ‘mathsy-science’ brain, others won’t feel as bad. Hope it all goes well for you, look forward to any sequel!
Fantastic blogging Anne. Thanks for telling the tale of your CGM success!
Hopefully the next one will go in better with less stress. One thing I’d check though is whether you need to remove for bathing. When I’ve been fortunate to get one I never have and they seem to survive OK.
Look forward to hearing how the next ones go.
Dave: thanks so much hun. You are more than likely right and I will check. By the time we had got to step 11 and we were at the taping on stage am not sure I remember much 🙂
Great to have you guys to talk to. It makes all the difference to me in the world.
Thanks, I enjoyed reading your blog…….you’ve hit the proverbial nail on head, in so much as..let’s imagine how our patients would get on.
Another great Blog Anne! A 16 step process for using a device is not user friendly in my opinion. I would be hopeless as I am not the sort of person who reads manuals, I just fiddle and work them out, but sounds like the CGM is a whole different ball game! I’m certain you’ll crack it.
Great reflection – just wondering or maybe that is ‘reflecting’ on your experience. If you as a knowledgeable professional are having difficulties what about those without your extended knowledge? Keep going with your ‘trial’ maybe the pitfalls make you more stoic!
Love this blog. i was a DSN before entering the portals of academia 16 years ago – always more to mananging diabetes than number crunching. Found the job impossible to do and moved to HE where I thought I could make a difference (oh dear!!).
I blog to to relfect – great job – marvellous – keep it up
Thank you to everyone who has commented on my blog. Its been interesting to see the responses. I was heartened to read that others also thought it was hard (I love the dark art of diabetes) but I guess, more importantly, that if we are going to maximise the potential of technology we need patients who can understand- if this is to happen we need to make it as easy as possible;the technology needs to respect patients! My other reflection is that these might be new skills for HCPs and we should make sure staff are equiped too!
Anyway – when the new sensor comes hopefully I’ll be able the tell you all abut the mathy-sciency stuff as well!
Thank you so much for contributing.
Another great blog Annie, keep em coming. I did laugh out loud at your boobs getting in the wat comment!
Looking forward to the Feb 2014 sequel to this post….sending positive vibes by the bucket load 🙂