A poem from a diabetes Mum: I lost a layer of skin

One of our members has written this beautiful and moving poem about her child with diabetes – she has agreed to share it. We are sure many of you will identify.
thank you Maureen
xx

I lost a layer of skin
I lost a layer of skin as we entered the hospital on the day of the diagnosis.

I didn’t feel it fall off.
It certainly didn’t hurt.
It gently slipped off with less than a whisper, unnoticed, like a soft, satin scarf.
I wish I had noticed it leaving.

I imagine it floating gently over the roofs of nearby houses,
carrying with it the half formed dreams I alone held for my child,
leaving behind only rawness.

Over days, weeks and months a strange new layer has grown in its place.
It’s a bizarre contradiction – tough yet sensitive.

Watching the drops of intense ruby blood makes it want to shred itself
Glimpsing needles pierce the stomach where raspberries were once blown makes it ache.
seeing the sombre eyes of a child learning to cope leaves a hollowness.
Dragging a weary body through night times of wakefulness leaves it feeling prickly.

It’s certainly more careworn than the layer it replaces
but it’s strong and it needs to be.
It bears the brave scars of battles: some internal and silent, some of epic proportions.
Hiding the multitude of maternal fears which largely remain unshared has hardened the carapace.

It has to be tough for the times when it’s all too much for a child who just wants the old normal.
The old normal isn’t coming back.

I like to imagine
that I’ll find that layer of skin again some day and fashion a purpose for it in this new existence,
for there is hope.

 

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Georgia’s Blog, stepping out of the comfort zone

young women laughing

This Saturday night I am going out somewhere for a few drinks and already I can taste what I’ll be having, as because I am both Diabetic and Coeliac my choices are limited. I usually stick to completely sugar free options as this way I don’t have to worry about the roller-coaster ride with my Blood Sugar Levels.

This weekend however I’m leaving my comfort zone and trying something new, I’m opting for a Martini with Lemon not Olives, but I have had a sip before and not sure it is to my liking, I guess we will find out.

I always dream of being that City girl who orders nothing but a Cosmopolitan, I guess I would like to channel my ‘Carrie Bradshaw’ in more ways than one. For anyone that knows me, you know how Fashion crazy I am and have a blog to prove it! I recently went for a Carrie Bradshaw style when I went out one night, most of my style is inspired by the elite of the Fashion World, however having Miss Carrie as an inspiration can work in more ways than one.

Aside from fashion, her attitude with her friends, her confidence, her independence and of course her thriving career. I know a script writer created her so I can’t be totally envious, however having her style in all the ways she is, isn’t totally a bad thing.

Leaving your comfort zone is sometimes necessary, depending on what it is of course – safety always comes first. I tend to stay in my zone of comfort, and most times I regret it. Last Saturday for example I didn’t feel like leaving my home and venturing out on my own, and now I wish I had. I had a pretty good night in the end but I was kicking myself that I didn’t have the guts to try something bold.

I guess what I’m getting at is, it’s time to bring my inner Carrie out and have confidence in my decisions and overall self, to trust my gut and go for it, to try the new drinks I’ve wanted to, to go out and have fun, to make the most out of my life and leave my comfort for those nights when I really need a night in, I’m only young once right? I recently read an article about ‘what I wish I did when I was 22’ and with now working full time I’m afraid I’m missing out on youthful events, but it turns out I’ve still got time to act like both a teenager and adult and still make the most of my young years.

So here’s to acting your shoe size and not your age, on that note maybe I should buy some new shoes – since I’m channelling my inner Carrie Bradshaw.

Also some Gluten/Sugar free drink options would be greatly appreciated.

YOLO? Georgia

young women laughing

 

 

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choices in diabetes management

How you choose to manage your diabetes may have powerful consequences. What may seem a small thing, such as type of insulin; how you deliver this – by pump, pen or syringe; the blood glucose monitor you use and how often you monitor – can be huge things in your diabetes management, ability to take control and how you feel about yourself and your diabetes.

what kind of diabetes manager are you?

Looking at what you would like people to say about you at your funeral might sound odd, but it can be a good way to find out what is important to you in life – for example would you want people to say “he was a really good diabetic”? Or “he could stick at things and work them out”; “she managed against the odds”; “she had a great sense of humour!”

This can help to find out what really matters to you in life and these are the things that guide you to take actions in getting and maintaining motivation and control over managing diabetes and other areas of life.

taking control of your diet and food

issues to consider around food include:

  • What sort of dietary “management” is needed for your particular situation?
  • What type of diabetes you have?
  • How old are you?
  • Are you are very active or not?
  • Are you male or female?
  • Do you want to lose, maintain or gain weight?
  • What types of foods do you enjoy and want to have in your eating plan?
  • Does food factor much in your diabetes management? For example do you want to have a low carbs, and/or low GI carbs eating plan? How about portion sizes? What about built in treats? What will you use for hypo management? What about exercise carbohydrates?
  • Are there issues to consider such as your culture or religion, family eating habits and daily routines with work or study that impact on the way you eat, when you eat and so on?
  • What is your financial position and are there any restrictions on your weekly food budget?
  • Would you benefit from some input from an dietitian? This may be to revisit your understanding of carbohydrate management; find out what is new in terms of diabetes and food if you have had it for a long time – things change rapidly; weight management support; or any other reason why you feel some outside support and input may be helpful.
  • What is your history and relationship with food – how do you feel and think about food? Perhaps you don’t think about food – it may be that being conscious about food and how you think about it, can help you to manage better.

These are the kinds of questions you can think about and discuss with your diabetes team, so that you develop a realistic and healthy relationship with food that not only makes diabetes management easier, but makes food just a regular part of life and not something that needs to dominate things. You can read more at our Food and Weight Matters pages here

older man gym

taking control of your exercise and activity

issues to consider around exercise include:

  • Your age and fitness level
  • How much time do you have for formal exercise and how much you can build incidental activity into your day?
  • What type of diabetes you have? People with type 1 in particular have hypo management to work out with exercise and this can become frustrating and disheartening; people with type 2 diabetes are often trying to lose weight and may have some physical restrictions for exercise
  • Do you have any physical restrictions?
  • Think hard about what physical activity you have enjoyed the most in your life? This is the most likely thing you will stick at – do you like solo or group based activity for example? Do you like to be indoors or outdoors? Do you like routine or variation? Do you want to combine aerobic and strength based exercise? How motivated are you?
  • With type 1 diabetes, how will you prepare and manage blood glucose? What will you do if you plan exercise which does not happen? How about if you have unplanned activity- how will you deal with the risk of a hypo? How to minimise hypos and increase the weight management aspects of exercise with type 1 diabetes?
  • If you have type 2 diabetes and have physical limitations, have not exercise before and/or feel embarrassed due to being obese or overweight when exercising – what can you do to feel better about this, so you can get out and exercise? Would counselling, or other support be helpful? What about specialised groups such as walking groups, Heartmoves and Lift for Life? Look around for resources to support you on this journey.
  • What sorts of ideas, thoughts or stories do you have about exercise? We all have them! For example, when the weather is better, then I will go walking; when my knee is better, then I will go to the gym; when work is not so busy, then I will go to the pool” – these “When, Then” stories are something we all have in many areas of life and they are not helpful!
  • If you are constantly waiting for the perfect time to exercise – don’t! There is no better time than the present and the barriers to exercise can be broken down when you can consider all of the above elements.

And finally how will exercise assist you in your life?

It is not just about a healthy heart and body, exercise also increased feel good hormones, reduces stress, helps us sleep and makes us feel we are doing something positive for our health – so it is a very important thing to work out how you can stick at it for your whole life.

Maybe you are better off walking to the playground with the kids and playing with them if you have a young family, so you all benefit? Or walking the dog so he also gets a workout! Exercise Physiologists are wonderful support to assist with working out how to build exercise into your life. Hop onto our Diabetes and Exercise page for more.

taking control of blood glucose monitoring (bgm)

BGM is an unwanted but critical part of diabetes control. However there is no set standard when it comes to choosing a monitor, or deciding how many times a day, week, month, to check your blood glucose. This can make it very confusing!

young woman counselling

type 1 diabetes

Generally, you can consider that in type 1 diabetes, you will need to do a minimum of 4 – 6 blood glucose checks a day ( and calling it “checks” and not “tests” can have a big impact on your feelings as checking is a guide, testing is…well a test)

Many people wth type 1 diabetes do more than 6 checks a day. On an insulin pump you may do many more. It is also important to remember that on sick days, at times of high activity or exercise and other unusual situations outside every day routine – more BG checks are needed.

How often you check depends on why you are checking, what you will do with the results and how you will feel about the numbers.

In type 1 it is important to check regularly so that you can monitor for high and low blood glucose; make adjustments to insulin for high readings and catch low ones; manage the dose needed for the carbohydrates you are eating. It also has safety purposes, such as when driving, working or looking after children – it is important to know what your BGL’s are so you can be sure you are in a safe range and not going to lead to a danger for yourself or anyone else.

there are a few reasons to check bgl’s in type 1 that assist your control:

  • to keep track of what is happening with your diabetes overall and on a daily basis
  • to monitor impact when there are management changes – such as with hormonal changes, pregnancy, growing up, changes from injections to pumps, change of insulin, a new diagnosis of another condition or introduction of a medication that may impact on BGL’s
  • to manage sick days and prevent ketones and hospitalisation
  • to manage BGL’s when in hospital for surgery or other reason
  • to manage exercise
  • to prevent low and high BGL’s
  • to ensure you and others are safe
  • to manage the food you eat
  • to make you feel better about how things are travelling on a daily basis and reduce anxiety

and overall, to get some sense of control and ability to make necessary changes.

Type 1 diabetes can present a roller coaster ride within a day, or even from hour to hour, so BGM becomes critical. BGM also becomes very wrapped up in mental health and wellbeing. The results of BGM can seem like a test of what kind of person or what kind of “diabetic” you are, leading to you feeling down on yourself if the results are not what you would like.

It can become a huge stress and a ‘symbol” of your diabetes – so if you are having a hard time, are feeling burnt out and unmotivated, not checking BGL’s can feel like a way of ‘rebelling” against diabetes.

However the background stress of knowing that you actually don’t have any idea what is happening with your diabetes will build up and ultimately have the opposite effect, with you feeling more stressed and more burnt out.

Stopping to check BGL’s can really assist in feeling in control. Sometimes you may need to ease back on this, if you are doing a lot of BGM and feeling burn out, try doing less checks, rather than none and giving yourself some time out whilst still maintaining control. The way you think about results and what goes on in your head can really undermine this one – so try to tune into this and see the thoughts that run through the background around BGM.

type 2 diabetes

 In type 2 diabetes there may be no need to monitor BGL’s at home at all, or you may need to be checking the 4 – 6 times a day and anything in between! This depends on whether you are newly diagnosed, have had type 2 diabetes for a long time, are on diet control, medications and what type, or on insulin. Some of the reasons for BGM at home in type 2 diabetes include:

  • Just diagnosed and need to get an idea of what is happening
  • Changing management – to medications, different medications or insulin ( the vast majority of people with type 2 will eventually need an insulin injection or more down the track)
  • Illness or other medical condition or surgery/hospital admission
  • You want to do regular checks as you like to see what is happening from day to day

Often with type 2 diabetes, initially there is no need for checking BGL’s at home, or just to get some idea of what is happening. Your GP and or diabetes educator should discuss this with you at diagnosis.

If the outcome if for dietary management and lifestyle changes at first, then it may not be necessary to do any BGL checks at home for a while. The doctor will use your 3 monthly HbA1c check to see how things are going as it gives an average over the past 8 – 12 weeks.

You should have some say in whether you want to do some checks at home or not. Some people will do a few checks a day, or a few a week and if this is the case, it is helpful to do them at a range of times, to get some overall patterns.

If you are on a medication that can lead to hypos and/or insulin, then checking up to 4 times a day is usually recommended. As with type 1 diabetes, exercise and activity, missed meals and illness can affect your BGL’s and so a closer watch is needed.

Many people with type 2 diabetes get mixed up with all the conflicting information about BGM and it is important to ask questions and also be clear about what you want to do at home when it comes to BGM. It is also true that BGM can become a real stress and lead to people feeling depressed and worried – if this is the case it is also important to work out what is going to be best for you and speak up!

What kind of management choices do you make for your diabetes?

Helen

xx

Helen Edwards

Founder and Director Diabetes Counselling Online, person with type 1 diabetes for 35 years,mum of 3 and blogger at www.recycledinteriors.org

 

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prejudice, judgement & bias- who me? I’m a nice person! I know all about diabetes, right? Talkin’ WDD2013 blues

Today is World Diabetes Day, 2013. What is your wish for today? Mine is that through awareness and education, the prejudice, judgement and bias shown by media and ordinary people about those of us living daily with diabetes would come to an end. Or at least reduce. It’s also about the self education that those of us living with diabetes seek and need, to manage our diabetes well, and to deal with our own self blame.

So my wish is for Education.

I have personal experience of living with Type 1 diabetes, Type 2 diabetes and also gestational diabetes. My first darling daughter was diagnosed with Type 1 when I was 32 years old, a young mother. I was diagnosed with Type 2 at 52, and my beautiful second daughter with gestational when I was 61, and already a grandmother to 2 grandbabies from my Type 1 daughter. I have many relatives living with all types of diabetes. I have lived and breathed diabetes for 34 years. I frequently get angry or defensive when I see people with diabetes misrepresented or judged. 

Nobody chooses diabetes. 

Probably the biggest single judgement made is thinking ‘people cause diabetes by what they eat’. Yet many people eat indiscriminately themselves, not thinking, ‘should I eat that, it might give me diabetes’. They probably think, ‘I shouldn’t eat that, it might make me fat’, because that thought is about how we look in the mirror, not about our health.

My theory is, some of those people go on to develop diabetes, and then feel more ashamed and self blaming than they would if they understood how it all works. Sure, being overweight & not exercising & not eating a healthy diet are risk factors. But not everyone living like that will develop diabetes.

All children eat & drink sugar. All over the world. Yet only a small percentage of children develop type 1 diabetes. Those who do, need to eat sugar or glucose at times to balance their insulin intake, because it’s not a mathematical equation. People who think they know ‘all about’ diabetes, even some in the medical profession, will sometimes act as ‘experts’ and tell the Type 1 person, ‘you can’t eat that’.

Sugar does not cause diabetes. Sugar does not cause diabetes.

Read more about that here.

We are a food obsessed world. I cannot turn on my TV without coming across a cooking programme, every day. There are more restaurants & cafes in my hometown every day, including ‘pop ups’ ‘takeaways’ and ‘home deliveries’. Groceries can be ordered online and delivered to the home. We are in a time of Feasting in the Western world, alongside incredible famine in other places.

The big push for World Diabetes day this year has been about Prevention. This push is partly driven by the panic of governments world wide that the ‘epidemic’ of diabetes is threatening to be a huge financial drain on budgets.This has stirred up all kinds of guilt, anger, bias and prejudice, including within the Diabetes Community world wide.

There are some parents of children with diabetes wanting to revert to the old ‘Juvenile Diabetes’ name for Type 1 diabetes. It is true in this argument that there is as yet no way to Prevent Type 1 diabetes. However, this ignores the fact that adults are also diagnosed with Type 1, and that some people are now diagnosed with LADA,’late onset’, or type 1.5, or may have both types.

Type 2’s universally carry a heavy load of guilt, thinking ‘somehow I caused this to happen’. The implied judgement is, ‘You should have Prevented this’. It’s true that for some people with Pre diabetes, losing weight, watching their diet, & exercising will mean that they can prevent or delay their diabetes eventuating; or that for people with type 2, their diabetes will be controlled for a time (maybe a long time) without medication. It’s also true that they will probably progress through oral medication to insulin, if they live long enough. So ‘prevention’ is probably not the accurate word: it’s probably more accurate to talk about ‘delaying’; and only true about the onset of Type 2.

For all people with diabetes, the fear and risk of complications from poorly controlled diabetes is very real, and a daily battle. Prevention then can be used to mean Prevention of complications. This is the message of WDD2013 and the IDF that I would like to see people taking about, rather than the ‘prevention’ of diabetes itself. The Prevention (or delay) of Complications of diabetes.

This can be done by Educating people with diabetes, in a non judgemental way. Those of us with diabetes can be pro active in seeking self education, we are autonomous human beings, we can choose to find out what we need to know, and bring our Health care professionals, families, work colleagues and friends with us on the journey. People can be helped to manage their diabetes at an optimal level. That means, making and keeping appointments, monitoring & testing, eating, exercising & medicating. It also means looking after our Wellbeing.

These are the reasons why my wish is for ‘Education’ about diabetes; and that includes a wish that ‘Judgement’ & ‘self blame’ be removed. Who gets judged for having asthma? Motor Neurone Disease? Breast Cancer? Like many others, I have lost loved ones to all of these things. So why is diabetes different?

We are turning the World Blue for diabetes today, my wish is that this not be the ‘blues’ of Depression, up to 3 times more likely for pwd’s, but rather the blue of the blue blue skies, sunshine and optimism, the blue of Hope that insulin, oral medication, testing & monitoring, research, health care professionals, & above all Education, can bring to the whole world, one where diabetes is just one of many chronic conditions for which the sufferers are not blamed, and where everyone can be helped to live full, giving, and rich lives.

Helen Wilde

Helen is a long term Senior Counsellor with Diabetes Counselling Online, Teacher, mother of a type 1 diabetic for 34 years and a type 2 diabetic herself for 12 years.

You can get help from our team here: http://www.diabetescounselling.com.au/counselling-request/
You can also join our Chat, forums & chatline from the front page of the website.

A scratchy Jug Band rap from 1926 Talking Blues

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