I have been staying in hotels in London this week and happened to notice, and smile, that almost every bag I have for overnight travel has a stub of a roll of fruit pastilles in it, my preferred ‘hypo on the go’ treatment, as I hate glucose tablets.  Jelly babies are another stalwart and they live in a bag in the glove compartment of the car.  They are all a reassuring presence and I wonder if my life will always have an ironic scattering of sugar from the fruit pastilles in all my handbags and makeup bags.

The reason I noticed was that I needed to eat some of them as I was away, in a hotel room alone, and didn’t want to go to bed with blood glucose of 5ish, it just feels too low and a hypo at night may not be a great thing for me – my previous blogs tell that story.

But this is a good and positive story as over the last months I have been using my new continuous glucose monitor (CGM) and unlike the first time it’s all gone quite smoothly.

I bought my own transmitter and sensors around Christmas time as a gift to me, costing £275 (just so you know) with 5 sensors that last 6 days each.  Medtronic had a special offer on (runs until end April – see here) and as I have my wonderful Medtronic pump where it can read the data from the transmitter,  I decided to give it another go.

I don’t want to wear a CGM continuously with the current technology.  It means another site and more paraphernalia attached to me.  I am, however, interested in why over the last 6 months I have really struggled to keep my blood glucose down.  On the face of it I was doing the same as I had been doing for months but I was getting frustrated as nearly every reading was in the teens and I was feeling tired and a bit fed up.  I wanted to know what was happening so I could try to do something about it and a record of my blood glucose coupled with my insulin regime needed looking at and I probably needed to change my regime, you see in diabetes it’s more complicated than just not eating things and being ‘good’.

This time inserting the sensor with the fab rep from Medtronic, for the first one, went really smoothly and the second at home on my own went even better.  I realised that I needed not to rush, that it would take a bit more time than a pump ’re-siting’ as it’s slightly more complicated but also I’m still a novice.  On balance my advice to people new to them is give yourself plenty of time, and don’t rush, take things step by step and I found that meant I didn’t waste any expensive sensors this time around.

Information is gold and information means power.  My results from my CGM showed me that I had two problems not one and that although I had been trying to fix one of these things without the information unless I corrected both I was doomed to fail. 🙂

I found that the insulin delivered by the pump all the time (called the basal rate) wasn’t quite enough at some times of the day and needed to be increased and also my ratio of insulin to carbs, in the evening in particular, was wrong.  The second of these two things was sending me to bed with a higher reading than I wanted most days and because my basal at night was good, i.e. it kept me at steady blood glucose through the night, if I was going to bed high it just maintained that – go to bed high meant waking high.  Not the outcome I was looking for at all. 🙂

So here I am two weeks on – I do not have the CGM inserted at the moment.  Wearing them all the time with the current technology is not for me.  The warnings from the pump (I know I can change these) drove me nearly crazy – ‘Low predicted’, ‘You are definitely going low’, ‘come on Annie you are low’,’For F’s sake eat the fruit pastilles’ – of course they are not the real alerts and maybe it would be better if they were, but I found I was constantly alarming and when I was at work that was a bit cross making. 🙂

The best thing that has happened is that I have only had one reading over 10 in the two weeks since I changed my regime.  I am stunned and so delighted.  This is information for people at its best, I feel more in control and am actually looking forward to my next HbA1C – it’s a bit like an exam where you feel that you might have done OK!

But of course in life there is always an upside and a downside.  What many people don’t realise is that for many people tighter control means more hypos and that’s why I noticed the fruit pastilles and I need to restock.  Yep – I’ve had more hypos with the tighter control.  That of course also affects my weight so the next phase is to try to tackle getting my weight down again.  It never really ends!  But my CGM experience has been a great one so far and I’ll let you know what the HbA1C is in a few weeks!

PS this was my BG this morning 🙂 #HappyAnnie

Early morning testing

I’ve been quiet about my diabetes recently. When the rest of my life crowds in, a busy time, the amount of head time I have to spend on thinking about diabetes declines. So I am in the middle of a busy time of my life, especially at work, where we have been going through major organisational change.

That is one of the issues about diabetes, it is relentless and you never get a day off. So I am living with the consequences of my lack of attention over the last few months, my blood glucose of late has been higher than I would like and I feel much more tired than usual. It’s a vicious circle and pushes me towards avoidance of a HbA1c assessment and any conversation with anyone about it really (you have no idea how much I have had to push myself to write this down). I really don’t want to hear the bad news from the DSN about an elevated HbA1c.

Although not written about extensively some commentators refer to something called ‘diabetes burnout ‘a term given to the state of disillusion, frustration and submission to the condition of diabetes. When people reach this place they ignore their diabetes, I assume in an effort to find some respite for the unremitting responsibility and thinking that diabetes places upon an individual. I can understand this as diabetes is there for every second of every day and doesn’t just affect me when I eat but affects almost everything; I have to test my blood glucose before driving my car, going to bed, every meal, any exercise, any stress, travelling – actually almost anything that is just part of living.

People with diabetes in my experience don’t usually want sympathy – it’s more of an understanding and forgiveness for those days when it just seems like it’s too much to cope with. Non-patronising encouragement works well for me and focussing on things that are good. I dread a discussion about a ‘poor’ HbA1c which feels more akin to a school report where I know I didn’t revise.

We know that people with diabetes are much more likely to suffer from depression but this paper also highlights that we know less about diabetes and anxiety and the impact on well-being. It urges nurses working with people with diabetes to be aware of the psychological impact of diabetes. It’s worth a read.
http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/1161/files/pdf/jdn14-5_190-5.pdf

If you have diabetes or care for someone with diabetes and you feel you may be depressed there is useful information on the Diabetes UK site here:
http://www.diabetes.org.uk/Guide-to-diabetes/Care-homes/Mental-health/Depression/

I tweeted that I was feeling fed up about my continuously (or so it feels) too high blood glucose readings and I was told I was having a ‘POMPOM’ day (I know it wasn’t meant in a bad way :0)  for the person who tweeted it!).  I hadn’t heard the description ‘POMPOM’ before and can find no information about it on the web but apparently it comes from the Expert Patient Programme and stands for ‘Poor Old Me, Poor Old Me!’. I have to say I did have a bit of a reaction as sometimes I think I just want diabetes to ‘sling it’s hook’ and give me a day off – I am only human after all!  I’m not sure POMPOM is a useful description of how it feels those days when I honestly don’t want to be bothered as I have far too many other things going on.

So – I’m fine – I know I’m resilient but I must get back my concentration and do some exercise. That’s my action plan!

This a first time for me on my blog – a guest blog.  My Mum’s husband, Ian, also has Type 1 diabetes.  I have known him for many years but I still found some of his story about his care surprising.  In many ways he is quite inspirational – you will see why as his story unfolds:

A SWEET TALE

By Ian Bowman

I am writing this narrative about my 42 years as a person who happens to have diabetes. I was prompted to do this by Anne, who felt that other people might benefit by the experiences I have had over the years; the things I seemed to get right and the mistakes I have made.

From the age of 13 when my father bought me a bike I have been an active cyclist, I joined a club and toured all around the local countryside. At 16 I started to race and by the time I was diagnosed as having diabetes I had become a 1^st Category rider, so I was very fit – this has a bearing on my later life with Type 1 diabetes.  Just so you know a category 1 rider has to score a number of points in competitions for riding during a year and there is only one classification – elite – that is higher.  I understood this, unlike the term ‘Type 1’ – in those days you either had diabetes or not!

I am in the lead here! Look at the cars to see the age of the photo!

At the time I was diagnosed I had no idea what diabetes was.  I was working as a joiner and I had started to feel lethargic and terribly thirsty.  Unaware of what was wrong I started drinking loads of lemonade little knowing that I was making it worse.  Eventually I went to the local GP who suspected I may have diabetes.  I, and the people around me, had a very limited knowledge of what this meant.   I knew not to eat cakes and biscuits but that was it; pastry, pies and savouries we thought were ok. This was all about to change and my life with it, when I was sent to hospital for tests.

I was sent to Middlesbrough General Hospital to the medical ward.  In those days you were kept in while they carried out the tests.  I was in hospital for a week; it was a strange week with me been totally ignorant of what was the matter with me.   Syringes, needles, diet, insulin, and all the things that would become part of my life I knew nothing at all about.  After a week and all the tests, I was diagnosed as having diabetes and was told by the consultant in her office.  It didn’t sink in to start with, everyone is afraid of the unknown.  I was fit young with things to do!  I was confused.  I walked out of her office and walked out of the hospital my mind racing with what I had being told.  I walked into the town my mind still trying to come to terms with this new twist in my life.  I remember it was a lovely day and I just walked.  Eventually, and this may give some idea of the person I am, I accepted the fact and decide to be positive.  I walked back to the hospital into the consultant’s office and told her that this condition was not going to stop me from doing anything I wanted – and by and large it never has.

The journey started from there, they would not let you leave hospital until they had worked out the right dose of insulin and I could inject yourself. They gave you an orange to practice on.  No way did I want to stay!  I wanted to go home, so I started to inject myself and have done so ever since.  I was given a glass re-useable syringe and a small box containing about 12½ inch steel needles,  you had to boil the syringe and needle every time you used them and you used the needles until they were blunt. I was also given a booklet with different values for carbohydrates, a word that I had to look up to see what it meant, and a testing system where you could test your urine for sugar levels.  With support at home I started to come to terms with my new way of life.  In those days I was on insulin which was a mixture of quick acting and long acting and it was bovine based.

At the time this was all alien to me but because of necessity we adapt. To carry on cycling I needed to learn more about me and the affect of having diabetes, hypos, glucose, measuring, testing, now a way of life.

Around the time I was diagnosed my GP was killed in a plane crash as a result no follow up with the hospital was ever arranged so I was never seen by a specialist. This left me very much to my own devices.  I went with no specialist support for 10 to 12 years with no one monitoring my condition.  I feel sure that I am living with the consequences now, much later in my life. I have problems with my feet (neuropathy) and eyes (retinopathy).  What has changed is the support we now receive; the back-up we get now has improved vastly.

Over the years I have never given up my cycling and I have managed to remain exceptionally fit and this coupled with what I had learned about myself helped me with my control.   In those days with the cycling club I was in it was common practice to ride 150 miles on a Sunday, from Skelton to Scarborough, Hexham, Pateley Bridge, York – all over the north east of England.  I still ride my bike today, still with the same club where I have been the Secretary and Treasurer for the past 30 years.  We still ride up to 100 miles some Sundays during the summer.  Back in 1975, I and two other members of the club rode the clubs 260 in 24 hours, which meant me riding nearly 300 miles that day.

Riding in the alps

I did not return to the fold, i.e. under the care of a specialist, until it was decided to standardize insulin units when it was decimalized into units of a 100.  This changed my prescription and as a result I was required to attend the health centre where it was identified I had no specialist backup.  Now I have regular check-ups.  With support things have improved over the years needles and testing are better, meaning that my control now is quite good; my GP says I am his favourite patient.  I carry out multiple daily blood tests which helps me to achieve good control.

Another very important factor is the fact that I attended a DAFNE (Dose Adjustment For Normal Eating) course; I cannot recommend this highly enough.  DAFNE is a training programme designed to make it possible for people with diabetes to have a greater choice of food – as it says for normal eating.  DAFNE provides you with the skills necessary to estimate the amount of carbohydrate in your food and to inject the right dose of insulin. This helps you to lead as normal a life as possible, with good control.

A specialist once described having diabetes as like a three legged stool, the legs representing diet, medication and exercise; if you remove one leg the stool falls over.  You really could apply this to everyone, even if they haven’t got diabetes!  One positive aspect of having diabetes is that you health is constantly being monitored, problems identified even problems not necessarily diabetes related.  The other really important thing is be positive as having diabetes is also about getting to know yourself because everyone is different and you have to work out what works for you.

I am now 66 years old and not only do I still cycle I have done many long distance walks including the coast to coast walk.  I used to run half marathons, but since I retired I have concentrated on my first love – cycling. I also have two dogs to walk and an allotment which both myself and the wife do.

Throughout my life I have believed that I can have a full and healthy life despite having diabetes and I still try to live my life in this way.  You cannot defeat diabetes but you do not let diabetes beat you.

Ian Bowman

On the coast to coast walk

Proliferative diabetic retinopathy (Photo credit: Community Eye Health)

Before I started to connect with other people who had Type 1 diabetes on Twitter I had no idea that so many people had the same feeling about diabetes retinal screening that I did. It has been a real revelation and to some extent has made me feel marginally better; before that I felt such an idiot – after all its only having a photograph taken of the back of your eyes and other than the stinging drops and nuisance of dilated pupils it’s not painful at all.

They don’t really understand why diabetes causes retinopathy but Diabetic Retinopathy is the most common cause of new blindness in the UK in those people who are of working age. In many sites it states that once someone has had diabetes for more than 20 years nearly all people with diabetes will have some retinopathy. I have had type 1 diabetes for 33 years.

Just before I go on in those 33 years I have never been admitted to hospital (with the exception of having my son) and never had a day off ill due to my diabetes. My case notes I would say are remarkably thin – here is a picture of them. I have worked with hospital notes for many years – take my word for it for 20 years of care at my local hospital these are very thin! I conclude that I have remained reasonably well controlled for a significant period of time (I’m touching wood as I type).

Back in the 1990s, before the national retinal screening programme existed I had great care. I used to see an Ophthalmic Registrar every year in the diabetes centre. I had continuity, as I saw him quite a few times, and he was great. Apparently I have some interesting blue crystals in the lens of my eye that he used to show medical students if they were with him. It used to make me smile.

In later years the retinal screening service was created locally and I started have photographs taken of the back of my eyes. I wasn’t sure at first but I became used to the convenience of a local appointment. The technicians were pleasant, if sometimes a bit patronising – I think because I am now clearly middle aged they assume I am type 2 and have never had eye screening done before; of course I have had my eyes examined more times that I care to remember. In conclusion the local retinal screening service is a great service.

Eye screening has always made me vaguely anxious. Part of the problem with retinopathy is it can be a little bit unpredictable – improved control, as much as poor control, can cause deterioration. That’s what happened to me. It could be a co-incidence, and due to the length of time I have had the condition, but when I got my beloved insulin pump they started to see deterioration.

Eyes are very precious. They mean I can see to draw up my insulin and count the carbohydrate on packs of food. I can see to set my pump. I can read for work and pleasure. I can drive. All of these things mean freedom, independence and an ability to support my family. The thought of losing these is so scary I can barely write this down.

Retinal screening isn’t a great experience either. It takes me out for around 4 hours when I just can’t focus to drive or do very much at all. When I went to the retinal screening service, as it was local, I could get there on the train and bothered no one. I could make up the work time I missed and all was well. This is a picture of my eye yesterday after dilation – it’s impossible to focus and bright light is painful as the pupil is so dilated the eye can’t close it down to protect the back of the eye.

This went on until around 18 months ago when the retinal screening process referred me to the hospital as there was deterioration in my eyes and I now fell into the category of having a referable diabetic retinopathy. As an aside I can’t get to the hospital on public transport easily and I’m not allowed to drive so usually my other half has to take a day off to take me to the hospital.

I duly waited for an appointment and eventually an appointment arrived. It wasn’t a great experience. I saw a registrar who was patronising and lectured me about how I must have good control; the implication was I hadn’t been good and I must improve. That day I was feeling a bit bolshie so I told him to look in my notes at my HbA1Cs before he made a judgement about my level of control. I think on that occasion the most recent reading had been 6.8 – good by most standards. His advice – we need to see you in 3 months. He said my eyes were the same as the last photograph but there was still the same problem.

I had a persistent sense of dread. I know that any illness or issue can cause a speedy deterioration and that the patient can’t always detect it. It’s a bit like a sword hanging over your head. But I’m a pragmatist and I carry on. There is little point in feeling sorry for yourself – it serves no one well.

I waited ….. and waited. Eventually an appointment arrived for 6 months later. I had been told to expect one in 3 months but I know how pressured services are so I just tried to stay well and went for the next appointment. The doctor, this time the consultant, was lovely – ‘No change – please come back in 3 months’.

I knew there were no appointments in 3 months – I asked. They don’t allow you to book at the time of your visit either. So you go home and wait for a letter. I waited and a letter eventually arrived. This time it was 8 months later before I could be seen.

The pressure is incredible to attend the appointment. There is no way I could conceive of cancelling and trying to re-arrange – so if I was doing a really important job at home or work I’m not sure what would happen. I feel sure I couldn’t rearrange at least without further delaying my appointment.

Yesterday I went for this latest appointment. The good news is – no change. Unfortunately he advised me again that I need to go back in 3 months. I told him I knew there were no appointments and how I knew. He advised me that his recommendation was that I should be seen in 3 months. I said to him that it was unfair on patients to recommend 3 months knowing that there were no appointments.

He is lovely but advised me to write to the hospital. I was a complaints manager for 9 years and I do not believe this is the right approach. He told me that since many more patients with type 2 diabetes were being seen in the retinal screening service the number of referrals to the hospital had doubled and that they could no longer cope without more doctors.

This is a really good example of how we need to look at and possibly change whole systems. If we can’t afford to be seen every 3 months we need to look at new ways to deliver these services to make sure we protect as far as we can the vision of patients with diabetes. At the moment the system is creaking and failing me, as a patient. I don’t know if this is the pattern everywhere or just in my locality. If we screen patients and find disease then we have to do something. I would love to work with them to work out what is possible. I can’t believe that my screening could not be done by using digital photographs and continuing to monitor them more closely but without me taking a specialist appointment as well as giving me responsibility to ask to see someone if I have a period of poor control or have symptoms; it just seems illogical as it works or doesn’t work now. I’m getting potentially worse care when I may have a greater need. It’s all upside down – now you see great care – now you don’t.

Last week I attended a lecture about diabetes and the use of motivational interviewing.  Interesting as it was, I have remembered one key thing that the lecturer said – that people with type 1 diabetes need to understand maths to GCSE level C, as a minimum, in order to manage their condition well.  I knew this of course and I also know that I struggle sometimes, despite my competence at maths; when you are tired and it’s late, working out ratios and residual insulin vs your carbohydrate intake can be a challenge.

Maths test:

Can you work out, for example, how much the total carbohydrate value is for these sandwiches?  There was, by the way, no total weight on the pack to help…..

The results from the continuous glucose monitor or CGM

Last time I blogged about my diabetes I told the story of my sensor and how challenging I had found it.  I can report that the second time it was a success!  My DSN inserted the sensor and I managed to get 12 good days readings.  I do think it must be difficult to manage some of the data on your own if you are not inclined to maths and stats.  The graphs are complex and not for the faint hearted – I think they are complicated especially when there are multiple-factors that could affect the results.  An example of a graph of my results is shown below: (pretty isn’t it 🙂 ). This was the second set of 6 days and are terrible!  They are all over the place but the adjustments I have been able to make as a result have made a real difference.  The continuous glucose monitor hopefully will have helped me to regain a better level of control.  I had accidentally disconnected the pump one night and another I just couldn’t get my blood glucose to go down.

Since I’ve been thinking more about my diabetes I have come to realise that its a lot more complicated than I lead people to believe.  As someone once said to me ‘diabetes is a dark art’.

Its not just as straightforward as taking insulin to cover the food you eat, even if that’s what many nurses learn.  Well, of course at the very simplest level it is, but there are so many other factors to think about.

Some extra factors to consider….

I found out from my sensor that I am more insulin resistant in the morning than the evening so need a different carbohydrate to insulin ratio between 6 am and 12 pm, so not only do you have to be good at sums you have to be able to tell the time too.  And of course there are some foods that just don’t seem to work out; for me pastry and fish and chips just guarantee a hike in blood glucose no matter what I seem to do.  Other people complain about pizza or pasta which I seem to manage fine – its so individual and therefore there are few hard and fast rules and its a lot of personal learning.

I also discovered that I was hypoing at night and getting a resultant rise, which meant I was sometimes waking with an unexplained (till now) high blood glucose.  I also have some dawn phenomena, a rise in blood glucose caused by the normal production and release of growth hormone which results in a rise in blood glucose in the mornings.  Its common but means that the basal (base amount of insulin given continuously via pump) has to be adjusted to different rates over the day.  I currently have a pattern that delivers 5 different amounts in the day.  Confused yet?

If I am doing something stressful at work then, counter-intuitively (you expect a low blood glucose) I need to take extra insulin.  If I am running a workshop all day for example I would increase my basal rate by 25% overall.  I’m doing a big presentation this week so I will need to test quite a bit and probably adjust to take account of a probably high otherwise I will feel poorly.

There are so many things to think about.  It really is, as I’ve said before, very complicated and no one person with type 1 diabetes is completely like another.  I don’t think about it all the time but neither can you have a day off.  So, I’ve decided that I am really a white witch who struggles to manage the dark art of diabetes. I quite fancy myself as the white witch from Narnia, slaying the dark monster diabetes.

The white witch from Narnia

Did you get the carb value right?  Its 46.6 gm CHO