‘You don’t know what you’ve got till it’s gone’

Dr R waves a filament triumphantly at me; ‘Ah, he says, we are normal’!

My feetBut I know the truth, I may have passed the filament test and in Dr R’s eyes be ‘low risk’ but my feet are far from normal, in fact they feel odd. I just know there has been a change and it’s not a good feeling. They use a filament, a small, thin, soft piece of plastic, to test sensation on the feet of people who have diabetes. ‘Can you feel that?’ is their phrase. Over the last 5 years or so I have noticed a real difference in my feet. I can’t always feel sensations like I once could and they get sore and give me a terrible burning sensation if I walk a few miles – I suspect its neuropathic pain. It’s not so bad that I need to do anything in particular but I know it’s not as it was – I think I have early sensory neuropathy.

I’ve had type 1 diabetes for more than 30 years, to be precise 34 years and 9 months. I’m well and although not as fit as I would like to be I’m active and doing OK. The trouble is I also know it’s a bit like walking a tightrope; diabetes can just nudge you off balance at any time for no seemingly rational reason.

My feet 2012 in Italy

My feet 2012 in Italy

Feet are funny but massively important parts of you. I seem to have hypersensitive feet; it’s always been a thing that irritates me that I can’t wear the beautiful toe post sandals. I just can’t tolerate the bit between my toes. On the plus side I am not, and have never been, a smoker and I do look after my feet, they are treated to lovely foot cream at bedtime almost every day and I am very careful these days about being barefoot (although I still do it, I mean, after all you need to feel the sand between your toes).

A diabetic foot is what it’s called – not the toe post sandals part, that’s just me – but the risk that people with diabetes have, the risk of complications of ulcers that don’t heal and amputations. You are warned about the risks; your feet are precious and the risks are related to good control. However, beyond 50 years of having diabetes of the so called ‘medallists’ only 39% of people are free of problems with their feet – yep that’s right: 6 in 10 people had some symptoms of neuropathy according to the study by Sun et al (2011). (Great study by the way – if you are interested in what happens to people with diabetes over time but not for the faint hearted with diabetes). I think that’s a lot. At clinic they risk assess you against criteria a little bit like this.

But that’s all well and good.

I am 51 and not 101.

I want to wear fashionable and sexy shoes – that usually means heels.

There is not a healthcare professional in the land who thinks that is OK; I have been advised to wear ‘sensible’ shoes. I rebel and I refuse. My wardrobe is full of suitably unsuitable shoes……

flat pumpsBut this summer has proved different. It is with sadness that I report that I feel myself slipping into the comfortable shoes abyss – I even bought some wide shoes this week; it makes me sad.  Here they are my little (wide) black walking pumps.

I know that many people have issues with their feet and for many different reasons and I empathise. My compromise solution is to wear comfort for walking and heels for all else. So if you see me slipping on a pair of wide pumps you know why – I’m walking somewhere and trying to keep my fitbit steps up! The truth is I’m a middle aged woman with diabetes who is watching out for her feet. And for all doctors, podiatrists and nurses; please remember we are people who want to express ourselves through our footwear like many other people, give us a break for as long as we can hobble in the shoes!

I will be wearing suitably unsuitable sexy heels for as long as I can 🙂

My favourite suitably unsuitable shoes :)

My favourite suitably unsuitable shoes 🙂

The other thing is, numbers are about other people aren’t they? But the uncomfortable truth is that they are about you and me too.

Footnote: I wrote a blog for the lovely @whoseshoes about my mother in law and her shoes and you can read it here

The title of the blog is from the wonderful song by Joni Mitchell – thank you to Pete, @swelldiabetes for reminding me!



Exploring New Territories

It was a usual morning with an early start at 6 o’clock to get the train from Wakefield to London. It was all pretty much typical, Costa coffee in hand and sat waiting patiently, shivering, on the station platform, as I always arrive early. As is also usual, I’m filling in those pockets of time with my Twitter feed on my beloved iPhone and I notice that the HSJ were announcing their first ’Social Pioneers’. As I do, I flick it open and the first thing I notice is a lovely picture of the lovely Teresa Chinn. Then as I scrolled down, there I was: gobsmacked – me a ‘Social Pioneer’?

I am passionate about how information empowers. Information can bring independence and create changes and shift in social order. So bringing information to nurses can enable them to improve their practice, see things in new ways, revolutionise and encourage improvement as well as spotlighting where things might not be right. For citizens, information can drive real change, be disruptive in creating new paradigms of systems and behaviours; I think that ‘Patients Like Me’ is one of the best examples I can think of that shows this; have a look at this story to see what I mean:

Frustrated ALS Patients Concoct Their Own Drug’ The Wall Street Journal, April 15th 2012

This powerful very short TedTalk from Stanley McChystal is about how having the confidence to open up information can make significant differences to what happens and illustrates my point too.


‘Information is only of value if you give it to the people who can do something with it’ Stanley McChrystal 2014

‘Sharing is power’ Stanley McChystal 2014

So what has this got to do with me being a ‘Social Pioneer’?

In around 2010 I discovered social media. I’m naturally curious and experimental so, curiosity prompted, I wander into social media. Wandering is a good description – I had little knowledge beyond being a Facebook user, no skills and little insight = scary!

What I discovered was a space that I think has huge potential for nurses but also those people who have health needs – it has the power to transform some aspects of how we use information.

What I also discovered amongst the nursing community was a reticence, anxiety and resistance and sometimes all of these things are still present. It frustrates me sometimes that I sense a lack of professional confidence about using social media and experimenting with its potential amongst many nurses. I also discovered people who I now realise are social pioneers, people with long term conditions and experiences of the health system that I started to follow and watch – I was amazed.

I saw the huge untapped potential that I believe social media offers us. Yes, it breaks down boundaries and flattens hierarchies, but it also has the real potential to change the very nature of the power based relationship between systems and people. I also believe it still has untapped public health potential but it has to move beyond broadcasting to achieve the possible.

So in 2010 I decided that one of the things that was needed were some role models in nursing that showed what could be achieved and as no one else (other than a few notable exceptions like Teresa @agencynurse and a few other pioneers) were taking that on, I decided that I would. If I was to show the power of social media I needed to ‘show’ it, not just point at it; doing presentations about social media is one thing but living it is another. So my ambition was to be a good role model for nurses in social media. That’s when the real pioneer journey began. My delight on being identified as a social pioneer was partly to do with feeling that it was evidence that I had, at least partly, achieved some of what I had set out to do.

In my journey I also discovered a very eclectic diabetes community and I am proud to say that I have also been part of that, making I hope, a contribution based largely on my 35 years of living with type 1 diabetes but of course combined with my other skills and knowledge. I have written with another social pioneer – @parthakar (whom I have never met in real life but know that I will 🙂  )  about the use of social media in the professional interface between professionals and patients – this would never have happened without Twitter. Here it is:

‘A New Dawn: the Role of Social media in Diabetes Education’

pionee signpost

Famous signpost with directions to world landmarks in Pioneer Courthouse Square, Portland, Oregon

That’s why the word ‘pioneer’ was the part that gave me the most satisfaction when I read the piece in the Nursing Times and Health Service Journal supplement. I was also cited alongside many people I greatly admire – each has made a unique and significant contribution. I was delighted that the write up picked up some of the very things I was trying so hard to do, rather than just my level of frenetic activity! That’s exactly what I set out to do, to start to chart the new territory of social media for patients and nurses and other people who are part of the big NHS and social care extended family and I hope I am a little part of an enduring story.

FlorenceI also came to realise that being called a ‘pioneer’ gave me great satisfaction for other reasons; I have always taken on roles in leading (and sometime ‘bleeding’) edge environments; complaints management in 1990 (listening to complaints then was not what it is now), NHS Direct, the National Programme for IT and informatics is still, in its own way, pioneering. There is also the point that nursing has a strong history of pioneers like Mary Seacole and Florence Nightingale – fantastic role models.

So on Wednesday I celebrated with a very large piece of cake!

Anne Cooper – ‘Social Pioneer’ – who would have thought it! Now where is the next territory to explore?

So that’s enough about me (a very self-indulgent blog this week AnnieCoops!): A very big thank you to everyone who was kind enough to nominate me (you know who you are), the Nursing Times and Health Service Journal and the lovely judges: Jenni, Andrew, Shaun and Emma. But also I couldn’t be social without conversations and it is those people who increasingly have the confidence to share, debate, support and push conversations in social media that I need to thank. Your conversations, blogs, video blogs inspire me, help me to grow and learn, support me and enable me to see new futures – thank you.




The rules of a food diary

Ever tried recording a detailed food diary?

The 10 Rules

  1. You must record everything that you eat that contains carbohydrate and preferable fat content too
  2. You should record an accurate time
  3. All drinks that are not low calorie to be included (no cheating)
  4. Everything that you eat (no exclusions)
  5. Even when you clean out the cake making bowl you have to count that too!
  6. If you are not sure how much carbohydrate you need to weigh your food – be precise – no guessing
  7. Eating out is a nightmare – how do you ask your friend/restaurant ‘How much does that weigh?’ or ‘Did you make that sauce with oil?’ but you need to record! No exclusions
  8. Check every bottle and every label – that’s right read the pack!
  9. Write it all down or record it accurately somewhere – most Apps not useful
  10. A gentle reminder – don’t forget to live at the same time 🙂

Oh and I nearly forgot – keep testing your Blood Glucose if you have Diabetes too…..


I recommend all HCPs try it for a week 🙂


The highs and lows of being a patient

roller coasterI’ve had a very mixed day today, you know, one of those ones where it’s a bit like a roller coaster, up and down and all around – I’ve been to clinic and it wasn’t all good news. To make it worse the good news came first and then the pricking of the bubble 😦 but I guess on balance it was OK in the end.

For those of you who know little about Diabetes I had a clinic appointment and was waiting for a test result called HbA1c. It’s a test that helps you to understand how well you have managed your diabetes over the previous 2-3 months (you can read more about it here). As I had been trying very hard to improve my diabetes management I was looking forward to seeing how well I had achieved this aim. But it wasn’t good news 😦Diabetes

My result was actually higher than I have ever had before and I just don’t understand why. I also have slightly raised blood pressure which has persisted for a year or so. Regarding my BP my lovely consultant, Dr R, wants me to take more tablets but I want to try losing some weight first but we agreed a middle way; a 24 hour BP recording to see what is really going on.

I was despondent. I need to lose weight – for the BP (and also for me) – but that complicates my overall management and I honestly don’t understand why my HbA1c is so high.

This is where the experience turned around – Dr R, is simply a star. Now you need to understand that I suspect I’m not an easy patient, particularly for the nurses, but probably also for the docs. I try so hard to be a ‘good’ patient but I also know that I’m a Yorkshire lass who has a reputation for calling a spade a shovel at times of pressure and clinic = pressure. I also, of course, can smell patronising behaviour from a long distance and my response isn’t always as gracious as it should be, despite my efforts.superstar

I am pleased to report that Dr R handled me and my need for help with skill and aplomb. We have a plan and, more, we are going to manage it using email and technology. It seems that he has heard my pleas for less ‘clinic’ and more remote help and responded with a positive optimistic and helpful outlook. I certainly didn’t feel patronised or told off, he just made to feel like they were going to help me to get to the bottom of my issue. I feel sure with a bit more effort on my part and with his insight and skill we can sort this out. It was the first time I have ever really come away feeling like I had a clear ‘plan’.

But the other thing that happened also made me very happy indeed. Sometimes, as a patient, when you give feedback it’s really hard to see whether anyone is taking you seriously. The place where I receive my care is a struggling Trust. On the recent staff survey only just over half of the staff said they would recommend it as a place for their friends and family to be cared for and they were in the worst 20% scores for all trusts for some of the measures. The diabetes centre is fairly new, build from charitable monies but when I got there today the reception area was closed, shuttered and unmanned for the second time – I suspect a sign of the underlying cracks in the system.Pressure

I also know they have a problem with workload and they need to think about how they can do things differently but I think they feel like they under siege; torn and burdened.

But I discovered that they do listen; Dr R is a gem. I spoke to him last time in clinic about how difficult it is to get an appointment and how I didn’t think I need to physically be with him in the same room and surely we could use different ways to communicate? I also subsequently pointed him at my blog about a ‘Year of Care’ – see here.

Well, well, well; he was bursting to tell me his news as soon as I walked into the room and he brought a massive smile to my face – they are going to start a service improvement initiative to do exactly what I suggested, finding 20 patients from each of the 3 hospitals who would like to try to work with the team in new ways, using email and technology, to see if it works! I couldn’t have been prouder. I just hope of course that it is better for everyone and that includes saving some money but they are going to do this properly, with proper measures to assess the impact – my little heart swelled with pride.Computer stethescope

I also persuaded him (I hope 🙂 to look at how these patients could connect with each other using social media; I offered to run some sessions for those patients who were interested – you never know it might help them to be better connected as it has done for many of the people with diabetes that I chat to on Twitter, using #DOC and #ourD. It seems I have volunteered myself to help and am delighted to do so.

So, today was a day of highs, too high a HbA1c and a great one of feeling good that I might be helping to support making things better even if it’s in a very small way. Dr R promises me that they will write this all up when they are done and I can’t wait to see the outcome.

Are you a patient who has a good idea? Why don’t you try offering it up to see what people make of it? You never know you might have one of the solutions everyone is looking for!idea

Fruit pastilles, jelly babies and information

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 BigBenscattering 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.

Jelly babies

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.clip_image002

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

Early morning testing

The hardest thing to say out-loud

It’s not very often I’m asked to talk about having Type 1 Diabetes – I’m usually in some nursing or informatics forum or talking about social media – but a few weeks ago I was delighted to be able to go to talk to a group of MSc nursing students in Nottingham. I had a great time. I came away with a real feeling of optimism for the profession. I hope they enjoyed it – some of them are likely to read this and I have no doubt they will tell mDiabetes sugare…..

While I was telling my story something strange happened, something cathartic and afterwards I realised I had never said some of the things I said to this group out loud, in fact when I said them I could almost feel the group do a sharp intake of breath, a moving back, a sitting up straighter; I don’t know, something shifted, moved as if they started to really listen.
So what was this revelation that I made? Difficult as it is for me I have decided to write it down.

Moving homeIn 1989 we moved house. It was the first time I had ever moved and I found the whole experience exhausting. We started early and finished late, running around, packing, unpacking and dealing with problems. I remember that I probably didn’t stop for food but my husband’s Mum made us some tea (that’s dinner in the North – just in case I am confusing you), I suspect I didn’t eat so much of it, as I was so tired – too tired to eat. I remember we hadn’t had chance to assemble the actual bed so we fell exhausted onto our mattress on the floor of our new bedroom. I woke up some hours later with paramedics in the room and no idea why they were there or indeed where I was.

It transpired that I had had a hypoglycaemic attack (a very low blood glucose) and I hadn’t woken up, caused I suspect, by my acute tiredness and lack of eating. I had fitted, a full blown seizure, and it was the scariest thing you can imagine. My poor poor husband had called an ambulance – I had been in a full-blown non-epileptic seizure, with loss of consciousness and convulsions and he was also very scared – it wasn’t one of the things I had warned him about!

Home - I didn't let it happen the second time we moved to this house.

Home – I didn’t let it happen the second time we moved to this house.

I can’t describe how this feels even now. I am someone who likes to be in control and to think that I was in a state whereby I didn’t know what had happened still makes me feel frightened. When people talk about avoiding hypoglycaemia at all costs, even when it means poorer control and all of the things that go with that, I completely understand.

This is hard to say out loud. I have no idea why. I fit at night if my blood glucose is low and if I am so exhausted that I don’t wake up. Why do I find that so hard to say? I think I know why and it’s the reason why I am writing this down.

Even though this is still hard to say – ‘I fitted’ – it wasn’t actually this that created the tension in the room with the students – so what on earth was it? When I fitted I was incontinent of urine and I wet the bed. I used exactly those words – ‘I wet the bed’. The room felt different and they were listening to me in a different way.

There are some things that still feel taboo, that carry a stigma and I think that having ‘fits’ is one of them and that I have internalised this based on my experiences and society around me during my lifetime. Internalized stigma is felt within the person with the condition and reflects their feelings, thoughts, beliefs and fears about being different (Muhlbauer, 2002). The fact that the students seemed unfazed by this confession was counter-balanced by what happened when I said that I had ‘wet the bed’. It wasn’t just me that noticed – there was someone with me on that day who commented afterwards, independently, ‘Did you notice what happened in the room when you said you had been incontinent of urine?’ I don’t know what made me say it – I had never said it out loud to anyone before – not even to my other half. So here we seem to have another social taboo, one that I had internalised.

Urinary incontinence is a really common condition affecting more women than men. If you simply google ‘stigma urinary incontinence’ you will find a plethora of articles about it. So, it seems that some topics are still hard to discuss. Writing this down is hard and it feels difficult to say; I feel that I might be judged as different and that this might mean people treat me differently.
tabooI have not experienced a seizure, or indeed urinary incontinence, for years now, mainly through improved control, because of my beloved insulin pump, and through more care and diligence around testing. But the fact is that it has taken me almost 15 years to say the words out loud make me feel sad. Many people live with conditions such as incontinence and as a result of the stigma attached to this do not report it to healthcare professionals who may be able to help. My hope in writing this down is that it helps to create conversations about some of these taboo topics that impact on so many people lives.

To find out more about urinary incontinence here is the link to the NHS Choices webpage.

Muhlbauer S. 2002. Experience of stigma by families with mentally ill members. Journal of the American Psychiatric Nurses Association 8:76-83.

POMPOM days and diabetes

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.

Diabetes sugarThat 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.

Diabetes BG testingWe 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.

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:

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.

Woman alone

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!

Guest blog: Sweet Tale

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:


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 1st 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

Now You See It – Now You Don’t

Proliferative diabetic retinopathy

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. Case notesI 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.Anne 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.

A Maths Test, a White Witch and the Dark Art of Diabetes

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