Dear anniecoops


I had a complicated teenage years. At 14 nearly 15 I found myself looking after a house and Dad after our Mam had left; Dad was clueless, he didn’t even know how to write a cheque let alone look after all the household affairs. Mam had done it all. I picked up where she left off.Anne 1975

The foundations of our lives are laid down in our early years. As a result of these circumstances independence has always been really important to me. I left school at 16, having been one of the top stream at school, and started work in a bank. I was, of course, advised to go to University – nearly all my contemporaries did exactly that – but wanting to be able to look after myself was a key objective for me and financial independence a key driver.

It was 6 weeks into my first proper job that I started to feel unwell. There was a small supermarket next door to the bank and I was buying can after can of pop to drink – I felt so thirsty. As a result of my drinking I was constantly up going to the loo at night. Classic, had I known it, symptoms of type 1 Diabetes.

I think it must have been the tiredness that did for me and after a little while I decided I really didn’t feel right and went to see my GP. In those days he took a blood sample himself to send off to the lab.

Two days later I was out with my boyfriend – on the motorbike where we spent all our spare time – when the GP came knocking on the door to ask me to go to the hospital. He was non-too pleased when Dad told him I wasn’t at home and of course we had no mobile phones back then so I was summoned to North Ormesby Hospital early the next day. It was there, at 16, on my own, I was told I had Diabetes.

005The experience of being on an adult female medical ward at 16 was fundamental, I think, to my deciding to become a nurse. But this blog is more about what things I would tell myself, the things I have learnt about having Type 1 Diabetes in the 36 that have passed; things I couldn’t have known. They are not all things I have done wrong – some of them are a celebration of things I feel I have done right too.

You can do it yourself

For me taking control and being independent has been key to the way I have managed to live the last 36 years. There are only two times in the last 36 years that anyone else has given me my insulin injection – the first was the very first time when a nurse showed me how, the second was when I let my husband have one go to see if he could do it, ‘just in case’. Diabetes usually needs you to do exactly that – take control. I think I have done this well and I have refused to let Diabetes be the dominant part of my life.

I would say: ‘Don’t worry – you can do this yourself’

Finding Diabetes friends

I learnt this lesson much later in my Diabetes career but I wish I had known it sooner – knowing other people who have Type 1 has really been helpful in the last 5 years or so. I have found new friends on social media, people who inspire me, have helped me, make me laugh and I know I have helped some people too. I just wish someone had told me, encouraged me and helped me 36 years ago when I was 16. I really could have done with a mate!

I would say: ‘Go find people to connect with who have type 1 too, they will understand better than anyone else’.

Never stop learning

It took me a long time to realise that keeping up with what is happening in Diabetes care can be really powerful. For many years I took no interest. I let my (then) British Diabetic Association (BDA) membership lapse and just carried on in exactly the same way for many, many years. Diabetes is complicated and I wish I had carried on learning constantly throughout the last few decades.  I think this is partly about ignoring my Diabetes; I don’t mean not looking after myself, but only caring about knowing enough to live.

I would say: ‘Never stop trying to learn more about Diabetes, it will help you to both improve the quality of your self-care but also make sure you know when treatments have improved as no one will necessarily seek you out to tell you’.

Almost everything is possible but some things are a bit harder than others

ward sisterI have never let my Diabetes get in the way but it can be a bit of a challenge. I remember people doubting that having a baby would be OK but it was, I remember a school of nursing telling me that they didn’t take people with Type 1 Diabetes for nurse training but someone else did and I remember working night shifts and wondering if I would cope but I did. Sometimes things are a bit harder than others but I have never let my Diabetes stop me from doing things I really wanted to do.

I would say: ‘Almost everything is possible but you might have to plan a little bit more than other people, perhaps less spontaneous but doable nonetheless’.

Ignoring it won’t mean it goes away

Finally I would tell myself that trying to ignore Diabetes and pretend it isn’t there doesn’t mean it will go away. I learnt too late that testing blood glucose is a good thing to do and to do it for me not for the doctor. It’s better to know what’s happening and I care more about it than anyone else. But then it’s easier these days – 5 seconds was unimaginable back in the late 70’s, we were still testing urine in test tubes then. Technology has improved our ability to feel in control without it being the centre of our lives; for this I am grateful.

I would say: ‘Test more and learn about your body. Ignoring it and doing the minimum isn’t the answer but you can be in control of Diabetes without it being in control of your life.

Finally, AnnieCoops, love, laugh and hug more. Diabetes doesn’t stop you doing any of those things :0)IMG_3687

Trying to make it look easy


I stand. I’m not quite sure what to do, the lights are flashing, I look up to see if I can work out what I’m supposed to do but I feel confused. I know I need food but I also have to pay and I just can’t work out where the tills are. I don’t know how long I stand there, minutes, but I know I need to move.Diabetes

I had been busy, focussed, trying to fit stuff in and get everything done. I had popped out to buy a present for a girl who was leaving and we didn’t have too much time so we needed to crack on. I suspect I felt a bit light headed then but I was absolutely focussed on task, it was only afterwards that I realised I needed to eat.

No matter what everyone tells you about being prepared, that’s all fine, but when my brain is struggling and thoughts are fuzzy I am not always as logical as I could be. I did have hypo treatment tablets in my bag but I seemed to have forgotten all about those. Believe it or not in a city centre buying food, preferably fast acting junk food, isn’t as easy as it sounds. I bought some Jellies from Thornton’s and crammed a few into my mouth, barely chewing, merely trying to ingest as quickly as possible.

Sometimes, for some reason that doesn’t always seem to bear any relevance to logic, it seems harder to bring my blood glucose up. It’s a rare event but nevertheless happens now and again. I needed something to drink, something with sugar. I knew what I needed to do. I walked through the shop doorway and stood.drinks

I stand a while. No one seems to notice. I close my eyes and try to think. I walk a few steps, wander past the isles. I see a fridge and eventually a grab a drink. But where are the tills? I feel mildly panicky. I can’t drink the drink without paying can I?

This happened to me two weeks ago. I manage this day, as I have managed for 36 years. Eventually I feel marginally better and slowly make my way back to the office. I tell no one and get on with my work. I know that there will be an inevitable rebound high so I keep a close eye on my blood glucose but giving myself more insulin seems counter-intuitive and I worry – too little and I will feel rubbish through ketones, too much and I will bounce down again…. It feels a little bit like Russian roulette.

I tell no one because I don’t want pity. I get on with some work but pack up early and make my way home.

I feel like I have the worst hang-over ever. My head feels sore and slow, my brain reacting to the lack of glucose, objecting and asking me to slow down.

Somehow it seems worse, the recovery, as I get older. It takes me longer to bounce back, to be on top form. This time the feeling of other-world-ness and being in a different space to everyone else persists for another day.

Type 1 Diabetes is hard. It’s a bit hard every single day but that’s OK. But just sometimes it’s more than hard, it’s disabling and frightening.Jelly babies

Do you know what it’s like to feel seriously hypoglycaemic?

Here is what a few of my twitter friends with Type 1 said when I asked them:

IMG_3687

Me and my unofficial carer! He looks lightly scared I know!

#labelsr4jamjars


DUKA few weeks ago I was very lucky to be invited to speak at the annual Diabetes UK Professional conference. I do not have any involvement in Diabetes in my professional life and as a consequence I very much felt like I was attending as a patient, who happened to be a nurse, and the conference almost felt like it had been ‘flipped’ for me; I was an outsider looking in. (Here is the link to our presentation on Social media).

I am more used to being a more integral part of a conference these days and even though on this occasion I was also a speaker it felt very different. I was there in my own time, rather than as a professional, so that was part of it, but it led me to see the conference through a new lens.

I have noticed before how people who have a long term conditions are often referred to by professionals and always had a sense of unease. For example overhearing a doctor refer to ‘the diabetics in the clinic’ makes it sound like those people are a separate species, almost a sub- species, that the professional sees them as separate and different from themselves. This has long led me to think about labelling theory and how it might apply in these contexts.

DiabetesAt the conference I yet again experienced this dissonance around the use of language. People with Diabetes referred to as ‘Diabetics’, ‘Subjects’ (of research), and cohorts. That data points were not really about people but abstract concepts that are of interest. This type of language seems to place these people outside of what everyone else ‘is’ and although labelling theories seem to have fallen out of favour, I can see how certain groups are placed out of what might be considered as ‘normal’.

I am no sociologist and I hesitate to link my observations to any theories – I know someone will pull my thinking apart – but what I do know is that there is both a good part and a negative part of being labelled in this way.

Some people wear ‘Diabetic’ as a badge of honour. I understand why this might be so. It allows people who may be similar to group positively together and own that individual and group identity. Others, like me, see Diabetes as a part of themselves, but perhaps not the most significant, and prefer to be seen as person first (who happens to have x or y condition). There are many conditions where these language labels are used: Diabetic, Epileptic, Schizophrenic, Bulimic, Anorexic…..

Those who say labels don’t matter and its just the language we use are often people who have not experienced any stigma associated with a condition. My experiences are low level but nontheless present. When I was younger I never had to explain that I have T1 Diabetes, the assumption was I was young so I would be ‘one of those diabetics who injected’. Later in my life things changed, as a rotund middle aged woman, now I have actually been told ‘You should stay thin and then you wouldn’t be a Diabetic’. Other low level stigma includes conversations like ‘You shouldn’t be eating that (cake, chocolate, etc) should you?’

I feel labels don’t help, in fact they get in the way of empathetic relationships, they create a perception of what matters to the individual based on their condition. As Brene Brown says empathy is feeling ‘with’ the person and not applying judgements. I strongly believe that empathy should be person focussed not condition focussed.  I am, however, expressing a view that may not be popular and others may challenge. In a study by Ogden and Parkes (2013) they found no difference in the beliefs of those with and without Diabetes using the word ‘Diabetic’ vs ‘Person with Diabetes’ although they do recognise that their methods may have impacted the outcome as they used a scenario based assessment to test their theory.  I could probably have told them what they would find using this method. There is more evidence in mental health that labels are perceived as unacceptable – I think there is more debate in this area and also a deeper understanding of the impact of stigma.

labelr4jamjarsI know that not everyone holds my view but I believe #labelsr4jamjars – we should always say the person first ‘Annie with Diabetes’.  A long time ago, when I was a ward sister, we had labels we applied to beds to label the person in them ‘Diabetic’ in red letters. I didn’t like it even then and I removed these from the ward and talked to staff about how I expected everyone to know who happened to have diabetes and that the labels would not be reinstated.

As an anonymous person with diabetes at the conference I did wonder how far we had moved on. Looking at it from the outside, through a new lens, it did feel like we still had a long way to go.

Thank you to Dorcas Lambert for the inspiration and courage to write this blog – its been brewing for a while – here is her blog on the same.

‘A diabetic’ versus ‘a person with diabetes’: the impact of language on beliefs about diabetes’ Ogden J, Parkes K, (2013) Eur Diabetes Nursing 2013; 10 (3): 80-85

jamjars

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

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Hen Replacement Therapy HRT – thank you June Girvin 🙂

anne 25

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

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!