The ‘big M’ – more taboo subjects #changethechange


It’s taken me a while to get my blogging mojo back. I’ve not been great you see; back in late November I was struggling with staying well – diabetes related – and had a couple of weeks where I am sure most normal people wouldn’t have worked. But I soldiered on. You see for decades that is what I have done. I have, in the Cooper family way, ‘Just got on with it’. What I find, at 51, is that it’s not quite as easy as it used to be. This has all been coupled with something else that has really been worrying me. I just can’t remember things like I used to. These two things together gave me a real sense of being out of control. Why did I feel so tired? I mean, so tired I felt like I could sleep anywhere. Why couldn’t I seem to remember one day to the next, let alone what I had promised to do, nor people’s names? Why didn’t I feel on-top of my game?? I finally think I know what is going on (and before someone jumps in and gives me wise advice of course I will be seeing my lovely Dr R in due course)  I think it’s one of those taboo subjects that no one talks about – the Menopause. After I started to feel a bit better in December I was lucky to go out with my friends, all a similar age to me, from book club, for our pre-Christmas ‘do’. They are all my age contemporaries – a GP, nurse, laboratory scientist, careers advisor, hairdresser and housewife come chef. I love them all. I decided to confess how I was feeling. I am so glad I did. ???????????????????????????We had a feisty conversation about aging and memory, about being tired, not sleeping, hot flushes and cold night sweats. It seems I am not the only one. One of my friends described her memory symptoms so vividly that I immediately started to feel better. There followed a long debate about the pros and cons of HRT. I definitely came away feeling more normal and much, much more optimistic. Since then, having had the conversation, I feel so much better and am actively doing things that help me to feel good. I know that is obvious but sometimes I just don’t do it! tabooIt led me to think about why on earth no one has ever even broached the subject of the menopause and diabetes. In fact no one ever seems to talk openly about the menopause…. It just seems to be jokey comments and a nod and a wink. Is this another taboo subject? The ‘big M’?? I looked online and of course the ‘big M’ does affect diabetes – it’s obvious. If you search online it says so; the ‘Big M’ can make you hypoglycaemic or maybe hyperglycaemic or maybe just a bit unpredictably dodgy…. And of course if sleep eludes you that has a habit of messing everything up too. If you wake up feeling a bit sweaty then is that hypo sweaty or just a sweaty episode? Well of course you just don’t know without testing and testing and testing. Ah, the ‘big M’! The other thing I found was that although again we don’t talk much about it, the ‘Big M’ can affect memory and it seems to be well reported by women, even if it never seems to be discussed openly. I found various pieces of information but this is the most insightful – a healthtalk resource where women talk about their experience – worth a look. menopauseYou need to understand, I don’t do this sort of messing around in my life! I ‘just get on with it’ and I don’t want to think that the ‘big M’ is getting in my way. Information about what is probably happening to me, along with the shared conversation with my lovely friends, made me feel better. I suppose it’s just another thing like Diabetes, a new visitor in my life, the ‘big M’. My experience over the last month just reinforced for me how important open conversations are and the importance of good quality information. I just wish someone had told me about the ‘big M’ before now. Oh, and I forgot to talk about weight didn’t I?!!? Oh forget that. Lets ignore that! I feel better now and on top of things again. I really wish these were not conversations that make me feel slightly uncomfortable, after all the ‘big M’ happens to many, many people. Why is it that it feels so taboo?

Post script: This blog led me to a group of wonderful women who are determined to change the conversations we have about Menopause and the evidence we have for care about menopause.  To find out more search #changethechange on Twitter

image

Hen Replacement Therapy HRT – thank you June Girvin 🙂

anne 25

Who knew? Me 25 years ago 🙂 No ‘big M’ here 😀

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Conundrums (the ups and downs of diabetes)


Woman aloneHave been working on my diabetes control this week – hard, harder than usual and it got me thinking about choices, dilemmas and conundrums.

If I eat in the evening at 6 or before, I get better control at night – but no one wants to go out for dinner at 5

If I eat healthily I am better controlled – but no one likes to be watched eating pudding alone

If I walk too far my feet burn – but everyone thinks I’m putting it on

I love latte coffee but it’s less good for me – Americano sucks

Being tightly controlled means more hypoglycaemic episodes – means I put on weight

When people are kind to me about having diabetes, I’m horrible and I hate it – what’s wrong with me?? I think I just want to be like everyone else

Diabetes BG testingI can’t be bothered to hide my insulin pump any more (getting too old to be bothered) – but then people stare

If I get on with my life and forget about Diabetes – it always comes back and bites me on the bum

My lovely son had a coarctation of the aorta when he was a baby and had to have surgery – I will never know if it was my fault = #guilt

My biggest fear is losing my sight, not being able to read my beloved books – but I take solace in knowing I would be able to listen to Radio 4 and the Archers

Diet coke is officially the most boring soft drink in the world – but often the only one served in bars (and then you are advised to check as they often give you full fat!)

I couldn’t join the Queen Alexandra’s Royal Army Nursing Corps because of my diabetes – but it didn’t matter in the end

Having a bad hypo during the day is awful but at night is even worse – thank god my pump has made this better

There is no such thing as a day off – but having a ‘kinder-to-self’ day is possible

I hate repeat prescriptions they are the bane of my life – second only to finger pricking

I am never going to run a marathon – but I never was a runner

When I’m going hypo my brain is working so hard to tell me to eat that I often overeat. It’s hard sticking to 15 grams of carbohydrate which is what is recommended

No one ever really celebrates a good day – as there are so many days to do!

I am very organised; planning is critical – but even then I forget stuff!

Diabetes isn’t static so you think you have worked it out then something changes – another ‘what the bloody hell’ moment!

But do you know Diabetes also contributes to who I am and some of who I am is not so bad.

Best friends at the seaside

Diabetes paraphernalia


IMG_3184This is an experiment inspired by the brave and lovely Charlotte (@bipolarblogger) but also to push myself to try new things.

Charlotte did a vlog to ‘show and tell’ all her medication for a week.  It was fascinating and helped me to understand.

So mine is a vlog to show you all the ‘stuff’ I use to manage my diabetes in a week. This is my personal list, everyone has their own approaches, favourites and tricks.  These are mine and mine alone.

Let me know what you think in the comments box :0)

PS I have learnt more than I needed/intended to know (ever) about video files, their size and how to compress them – #learningexperience

 

 

‘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.

Cake

 

 

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…..

Food

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