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I got to thinking the other day about life. I know, deep…..but from time to time lately (must be getting into my 40′s surviving 30 years of type 1 diabetes plus having teenagers and a toddler) I have really started to ponder this.

Living with a chronic disease or life threatening illness can really put you in a headspace where you start to question what life is all about. Many people talk about realising what is really important when faced with their own mortality. In particular when there is shortened life expectancy; daily impact from their condition and/or chronic pain – there is often a real impact on the way we view and live, life.

In these fast paced, competitive, money focussed “me” times of the human race, it is all too easy to get caught up in the idea that life is all about what you can get out of it.  We see that we need to get the latest “iPad”; “Blu Ray”; Widescreen TV; sports car; bigger house and so on – but we miss the point that these things do not make us happy.

People then seem to pass this message on to their kids so early – little ones are taken to 4 different classes each week – you know, music, dance, sport, extra tuition – all driving towards the ultimate goal of being a “celebrity”, being “rich”, “successful” and supposedly “complete”.

What people who have never faced a chronic or life threatening illness can fail to realise is that at the end of their lives none of this will matter and none of this will be of any consequence to anybody at all. What will matter will be the people we have touched in our lives, the impact we have had on other human beings, the experiences we have had in our short lives (in comparison to the universe) and the way in which we lived these lives. That is what we have put in to life.

In my opinion a life lived graciously, generously, with joy and passion and connected to other human beings on this amazing planet – is FAR more valuable and treasured than one lived to excess…

Looking at the universe and seeing all those planets out there, which at one stage of the history of our solar system may have been just like our earth and who knows, may have harboured “life”,  makes you realise that we are totally at the mercy of the environment in any case and that human history may one day end just the same way, perhaps becoming a planet of gas and volcanic activity, viewed from space by a new and emerging life form.

Who knows, anything is possible – just look at the miracle of a new baby and you can see this.

Yes I have just become an Aunty for the second time  (yay!) and it never ceases to amaze me how a baby is created and born – nothing short of a miracle.

Living with a chronic disease such as diabetes can also make your view of life become very insular, very focussed on how horrible you feel today, how hard it is, how unfair it is – this then makes life seem very small and hopless.  If we can take some steps back and look at the bigger picture of life, this is where diabetes (or whatever you have to manage) can seem smaller and the possibilities of life, depsite this disease, can loom large and joyful.

When you feel anger rising because your teenager did not clean their room, do their washing or turn out the light; when you become stressed because your house is a mess, or you have not had a chance to tick off all the things on your “to do” list; when you scream at the car in front of  you for going too slowly – just try to stop, breathe and remember that every minute lived is a gift – and that it is in your control to shift the way you feel about all of these daily pressures to ensure a happier and more peaceful ride, no matter what challenges you face

What is a holiday? Does it have different meanings and bring up different images for different people? I think the answer is a resounding “yes” and “no”. We all have shared ideas and images about holidays. There are the traditional shared holidays and there are also shared ideas about the ultimate holiday. Maybe it is skiing on a powder white slope; lazing on a golden sunny beach under a palm tree; hiking in bushland; an eco holiday; rail journey or cruise – whatever the word “holiday” conjures up for you, there will be many dreams, memories, emotions and plans centering around the idea of a “break”.

In order for this to work we need to be taking a “holiday” from something. For most of us this involves ‘getting away from it all”; spending time with family and friends; “hitting the road” and exploring the many twists and turns of a new place. We are so focussed on work and the everyday grind that holidays have become a formal part of our lives and one which many of us spend our time working for. A classic Aussie dream is to retire and become a “grey nomad” – hitching up the rig to finally get out an “live life for real”. This saddens me as the “for real” is the everyday – it is what happens from the minute you wake up, to the minute you go to bed and even the sleeping part. This is our lives and holidays form an important part of our lives.

So why are holidays so prized, dreamt about and planned? Think about someone on a game show, what is one of the main things they want to win? Either a holiday or money to go on one. This holiday thing is the big time when it comes to something we are all working to achieve.

My thoughts are that holidays are full of “down time”; are often spent with those we love the most; are often taken without the usual hustle and bustle of every day life; often take us away from our technological dependence (although nowadays this is not so true); allow us to go with what we feel we want to do with our time, rather than what we think we have to do; are full of happy and exciting memories; are often taken in exotic or distant places.

However there are also those holidays which are taken close to home, perhaps at the family shack or caravan park; are taken over a few short days and don’t cost the earth. In fact those types of holidays are often some of the best.

To me the important thing is the time spent savouring life. The time spent slowing down, stopping to “smell the roses”, enjoy family and friends and the world around us. Even if we have the old family arguments, stress and the predictable travel problems such as travel sickness, mess ups with arrangements, missed or delayed flights, language barriers and an array of other problems especially when overseas, the ultimate memory of a holiday is usually positive.

To me, part of the pleasure of a holiday is the planning. Working out when and where you will travel to; where you will stay and what you want to do with the time, even if this is “nothing at all”!The rest of the joy is in the doing, and then the remembering……

I have so many memories of holidays – as a toddler camping in a 2 man tent with my parents in the bush; as a child traipsing around Europe with my hippy backpacking and (crazy) parents dragging a 2 year old and 7 year old all over the world; as a teenager (grumpy but secretly thoroughly enjoying) holidays to places like New Zealand and Fiji, as well as travelling around Australia; as an adult being so lucky to go to Italy and South Africa for work with my Mum in tow (these memories are absolute gold despite fraught airport moments and robberies!); and taking my own family on so many holidays – to the beach shack a few hours away, the caravan park in my home city, interstate to forests and beaches and theme parks and road trips, and most recently to beautiful Brisbane where mum, Maxwell and I stayed in a wonderful old Queenslander and woke every morning to bird song and the warmth of the sun overlooking green in the middle of a city!

To me holidays form a major part of the threads of our lives.

I think that in life with diabetes we also need a “holiday” from it. If managing diabetes is like a job, then surely holidays and short breaks are just as vital to our continued diabetes management as holidays are to our lives?

How do we do this? We need to think about how we are travelling with our diabetes – are we ok with it, are there areas we could manage better, are there areas we are focussing on too much? Do we have problems that we need to sort out? Does the balance of where diabetes sits in our lives feel about right, or not? And how long since we have had a break?

Just like when planning your regular holidays or short breaks, even if all you do is take the occasional long weekend off work – you need to think about some regular breaks from diabetes. This does not mean stop looking after your diabetes. It just means allowing yourself premission to perhaps have a treat; not check blood glucose as often for a day or so; focus on other areas of your life for a bit; do some relaxation and self talk which helps you to put diabetes into a balanced state in your life – that there are many other parts of your life that are important.

Sometimes our health can become the focus of our lives. This can in turn make us “sick”. It is important to acknowledge that you are here, living every day – and that this is a gift. Taking a real holiday can be one way of helping you to take a break from diabetes and the stress it can bring.

Happy plannning!

Now I was thinking when I was away on my Easter beach holiday, about the thin line we can walk when we live with diabetes. Depending on the type of diabetes, how long you have lived with it, how you choose to manage and your own personal preferences and personality, you may or may not check your blood glucose.

If you are like me, type 1 for 30 years, on an insulin pump, live with erratic swings at times due to gastroparesis and a history of anxiety about hypos – then you probably check your blood glucose quite often, some may say even obsessively! The black marks and tough pads of my fingers are testament to this. I like to know what is happening inside my body, I like to be able to wake up with a reasonable blood glucose level if I can so I can eat without stress, to get through an exercise session without a hypo, to go out and about without feeling horrid from high or low levels and to care for my family without risk of anything going wrong due to my diabetes. In short, I like to feel in control. Unlike in my younger years I don’t like that crazy, heady feeling of being out of control – another sign of this is my decision to give up alcohol about 12 years ago.

Don’t get me wrong, this has not always been the case. When I got diabetes home blood glucose monitoring was not even happening. It came in shortly afterwards and the machine was huge by todays standards and required a squillion steps, washing and drying the testing strip and waiting for what seemed like an eternity. In my teen years and young adulthood I can not say I checked my blood glucose that often, I really don’t remember, but it was certainly not central to my life like it is now.

Is that a good thing, bad thing or bit of both, this checking often??? I think it is a bit of both for me. I do think that feeling compelled to check often can result in over correcting if you are not careful and also puts your blood glucose in front and centre all the time. But for me, this is usually not a bad thing.

So here is a little story about this reliance on a piece of machinery, how important it can become in your life and how scared you can become if it disappears…On the weekend I had planned to go to the local seaside markets about 10 minutes away from our beack shack. We were all very excited about this adventure. We bundled all the kids and granny into the car and arrived with high expectations about treasure hunting and finding local goodies. My blood glucose had of course been high that morning (it’s like it just knows) and I wanted to keep a close eye on it as I had given a bolus of insulin prior to leaving.

After about 30 minutes of wandering about I decided to check and see if I could have a snack or two…..(the smell of BBQ and donuts was overwhelming). A blanket of dread came over me, (not because my bag is such a mess), but as I looked I realised my blood glucose monitor was not in my bag – horror! I looked and looked, you know when you think something should be there and it isn’t? How you go over and over the same ground?

To add to this feeling of falling from a great height with no safety net, I could not see my hubby and kids, or my mum, so decided to head back to check the car, it had to be there.  Finding mum along the way I told her to look for the others and I hiked back up the hill to the car praying it was there. Of course when I go there, no machine. I searched and searched, then called Dad at the shack to see if he could find it. I headed back down the hill by this time little tears were starting – tears of frustration that even after 30 years diabetes can bite me any time it likes.

I still could not see my family and was getting pretty upset by this stage. Logically I knew I was not in too much trouble but at times I find it hard to pick up a hypo after all these years so this was at the back of my mind despite rationalising with myself. Asking around the stalls to no avail, I found Mum and she headed off to look for my family.

I too walked up and down and finally we all found each other, but still no machine. Of course we decided to head back. Everyone had had enough in any case but the wet blanket of my diabetes was very present. Luckily I had a back up machine at the shack – always a good idea to have more than one, especially when you go away. And as mum also has diabetes there are usually plenty to go around!

So, back at the shack, still no machine. We did wonder about my toddler jhiding it as he has a history of this – once deciding to hide Mummy’s machine under the skirt of a soft toy mouse standing at Grandma’s front door – it was just the genius of my ever toddler thinking dad who looked under her skirt and discovered it!

So I decided it was just lost and that was that. Mum however wanted to crack the case and she went back later and yes, some lovely person had found it and handed it in to the local tourist office. Everyone she spoke to knew all about diabetes as most of them had it! I was glad to have it back and wondered what adventure it had been on while away from me, had some random person used it to check their blood? Had it seen anything interesting on the market stalls, as I sure had not had time to look! Perhaps it had found a treasure and tried to tell me but I had been too busy to notice…

Looking back on this couple of hours of my life it may seem strange to some people, to feel so stressed by this experience. I know lots of people who would go out for the day and not check their blood glucose at all. The thing for me is that I would have lost the control that is so important to me, if I could not check to see the trends of my blood glucose.

And that is the moral of this story – it is your diabetes, you are the person most affected by it so stand up for the ways you want to do this and don’t judge yourself or other people who choose to do it differently.

Oh and bring on the artifical pancreas and let’s hope you can padlock it to your body so it is not possible to lose it at a seaside fair!

Have you ever felt like you didn’t “measure up”, didn’t quite “cut the grade”? Perhaps you felt “not good enough” or inadequate or worthless? Maybe a sense you just didn’t have it “all together” as you would like, or you dropped the bundle? This is how Michael White, the founder of Narrative Therapy,  once described the way that people may feel if affected by a sense of “personal failure” ….

The idea of “normality” is fairly new. It is also very powerful. It provides us with the criteria check lists by which we measure and compare ourselves and our “success” in life. Normality can sometimes work for us and sometimes, against us. Ideas about what is “normal” can isolate people and groups of people and give power to those who live their lives within this idea of “normality”. It also leads to us picking up invitations to feel like “failures”. Guilt gets a big part to play as well when we feel we “should” be, act, think, a certain way “or else”.

These ideas can also be used to diminish people on the basis of cultural or spiritual practices, sexuality and physical and mental health and ability.

The idea of “normality” can be interesting to consider in the light of living with something like diabetes. What is a “normal diabetic”?  How do we (and others) judge ourselves and the way we manage and sometimes don’t manage our diabetes. Sometimes it is just too hard so no wonder.

The word “normal” actually comes from the Latin or French word for the carpenter’s square, or normal angle! So we may ask ,what has that got to do with us? It was only in the 19th century that the word “normal” began to be used to in relation to people and their actions, rather than just to angles.

In recent times the idea of what is “normal” is applied to just about anything !- we are judged on our height, weight, clothes, body shape, child rearing, house and garden, time taken to grieve or adjust to something like diabetes, how angy and happy we are etc etc etc

There are many places in public arena such as our popular media for example, where ideas are created which are tempting for us to measure ourselves against. Just pick up any women’s magazine; home rennoavtion mag,  or watch all the advertisements on tv.

Lists about what is “normal” also abound!

The idea of what is normal is also constantly changing - we have developed so many ways of measuring our “normality” and we then equate this to what we are worth – it means we are “worthwhile” or “worthless” depending on how “well” we are doing against all of these “lists”.

For example

1. finished school (oh and went to the right school)

2. got a good job and/or went to uni

3. got married

4. had kids

5. built a house

6. got a 4 wheel drive!

7. have lots of family holidays

8. Have an HbA1c of 6 % all the time and no diabetes complications

8. have a tidy house

9. kept my figure and regularly go to the gym

This may be one person’s list by which they measure their worth…and what a list!

This leads to a sense of not being “good enough” or being a “failure” being very easy to fall into – if not fitting into what is expected, we can be overwhelmed by what can be called the “normalising gaze”.

So have a think about what lists and ideas are in your life that may actually lead you to feeling bad about yourself and falling into the trap of “failure” -

In my mind – there is NO normal – we are all beautiful and all unique