Jun 1 2012

Growing Pains

Sometimes I think I am my own worst critic. In fact I know that I am. This can be a good thing, as it makes me question my actions and do my best. But it can also drive me crazy, make me spend countless hours worrying about what I said, or did not say and obsess about all sorts of things. I wonder sometimes if living life with a disease that requires precision and testing all the time has made this worse.

I used to spend hours when I was younger worrying about how I looked. Finding the right clothes. Getting the right haircut. Wearing the right makeup. Looking for a cool boyfriend. And pretending I did not have type 1 diabetes. Once I was diagnosed with diabetes I did anything I could to hide the fact that I had a broken pancreas. I thought that I was a freak. I did not feel like I fit in with the crowd and living in a small country town just made that worse. Kids can be so cruel and even something like diabetes can become a target for bullying.

We moved there when I was just 9 years old and with my parents not only being “hippies” but being teachers at my area school, I stood out. Being new in a small town is often not an easy ride. I was bullied. Teased. Picked on. To the point I would spend hours in the sick room with tummy aches and can remember telling my Mum I was never going back to school and they would have to home school me. Of course I kept going.

Not only was I a little overweight as a child, from a family that were “different” and a bit of a softie, but I was also very smart. This did not make for being high on the popularity stakes! But by the time I was in late primary school I had a good bunch of friends. Oh we were not the “cool” kids, but we were essentially happy.

Bring on the end of year 7 and WHAM along comes diabetes. I missed the first two weeks of high school. My caring parents went to the school and explained to all the teachers and my friends, about type 1 diabetes and what they needed to watch out for. Suffice to say I headed into year 8 feeling like a complete and utter outsider.

I still had my group of friends, but I was looking for more. At the end of year 8 my soon to be best friend came to the school. She was a fiesty, pretty and outspoken girl and I decided on the spot that I would make her my friend. And I did. We became inseparable. And we became the victims of more bullying, even our friendship was targetted but we remained strong together.

Gradually diabetes faded into the background of my life for me. I decided not to let it bother me. But in my 14 year old way this did not mean accepting it, it meant not looking after it, pretending it did not exist. I also delved into behaviours that were completely out of character in my attempt to “fit in”. But still I was not accepted as part of the “cool crowd”, no matter what I did and I did some things I was not proud of.

Looking back now as a wise old woman of nearly 45, with 33 years of diabetes, 3 children, numerous relationships, trips to other countries, learning, seeing, understanding and knowing – I realise that all that time – those people were not cool. Those people were not people I would want to be. Trying to please the bullies by trying to be what you think they admire does not work.  And I sure as hell do not admire the behaviour of bullies.

And finally, I have realised that the way I behaved at the time was just a young woman crying out for acceptance – from someone, anyone, but mostly, from herself.

Growing up is hard. But growing up with something that makes you feel different when all you want is to fit in can be hell. I am glad I made it. I am glad that I also made it with all of the things I started out with before diabetes. I LIKE being a little bit different. I LIKE standing out from the crowd. And I LIKE that I can see right through a bully and realise they are just a little girl wanting to fit in too.

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Being “cool” is not about being the same as the bullies – it is about knowing who you are and then standing by yourself and being proud of who you are.

May 21 2012

D-Blog Week topic 7 – Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??”

Better late than never I have made it to the finish line. I was determined to complete this 7 day blog challenge and am pleased to say I have done so!

It is very apt to finish with a shout out to a diabetes hero. There are so many I could talk about. So many people I have “met” in my 10 year journey in the diabetes world. Before starting this journey I had never spoken to another person with diabetes. Nope, in the 23 years (at that stage) I had lived life with type 1 diabetes I had never actually met another person living with it. And what a difference it made to my life! I can remember the first time I sat down with a group of people all checking our blood glucose at the same time and how amazing that felt. I was not a kid that wanted to do diabetes camps. I wanted to stay right away from identifying myself with this disease.

I am now loud and proud.

So there is one of my diabetes heroes – all the people I have met, spoken to, texted, talked to online and generally come across in the past decade. This includes all the parents, families and passionate diabetes health care professionals. However I want to focus on a couple.

My Mum  - who is the parent of a type 1 (obviously) and for the past 8 or 9 years, a person living with type 2 diabetes. And my Aunty Viv – who is also now a person living with type 2 diabetes.

These 2 women are my rocks. And they rock!

They have walked alongside me in our work caring for other people living with diabetes for the past decade. They have worked tirelessly to keep things afloat, between them being the primary fundraising team, volunteer coordinator, admin support and Counsellor. All of this while they deal with the every day ups and downs of being Mums, Grandmas, daughters and people caring for their own diabetes.

These women and the kind of woman I want to be. These women are what I call the “sandwich mums” – the ones who care for their own mum, my Grandma, who is suffering the cruelty of dementia, their children and their grandchildren and usually keep quiet about their own pain and suffering. problems and struggles. These women give and give and then give some more. These women are passionate, beautiful, funny, caring and generous. These women are my family. These women live with diabetes.

These women are quite simply my diabetes heroes.

Thanks for a great week!

See you in blogland

 

May 19 2012

D-Blog Week Topic 6 – Saturday Snapshots

“Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

My life with diabetes is just that, my life. So I am posting some of the pictures of my life and if you live with diabetes – you know it is in every shot.

Hiking in Tasmania with my beautiful family = plenty of jelly bean stops and lots of beautiful memories – plus a fair bit of COLD air!

Maxwell – my third baby, fourth pregnancy and first time one of my children did not need special nursery care thanks to Pumpy – one of the best moments of my life and you can even see diabetes poking its little face in

The wonder that is a South Australian Summer.

One of the best moments of my life – seeing dozens of whales at the Head of the Bight about to cross the Nullarbor Plain – just breathtaking and yes diabetes was there as I drove 8000 km and back again

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On top of the world in Esperance, WA

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Driving from Adelaide to Perth and back again in 17 days across the Nullarbor and I drove most of it – lots of stops for BGL checks! I find this kind of trip sends me sky rocketing.

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My first baby, Cameron (in the middle) finishes school and heads to his formal – what a lot he has learnt about diabetes and about life :-) So proud – oh and his friends are pretty sweet young men too

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Simply one of my best pieces of work

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James and Maxwell’s hands when Max was just born

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Would you believe it was cold on the Nullarbor! And no we did not see any camels.

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Hard at work counselling people with diabetes

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Another holiday – on the Sydney Ferry – so lucky to be able to have holidays with the kids. Far better than a freshly painted house or fixing up the cracks!

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Each day when the sun sets I am grateful for my life – the sunset from my backyard

And the same goes when I get up each day – the sunrise on the Nullarbor – the most beautiful I have ever seen- the Truckie with Lady Di on the back just made it for me!

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May 18 2012

D-Blog Week- topic 5 – What they should know

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

This may just be the easiest topic of the week. Here goes.

What they should know (those who are more pancreatically blessed than I) is that they are lucky. 

What they should know is that they take for granted the fact they can go to bed, without thinking. They can wake up in the morning, without thinking. They can eat, without thinking. They can go for a swim, without thinking. They can go on a trip, without thinking. They can go for a walk, without thinking. They can party, without thinking. They can live, without all the extra thinking, planning, worrying, guessing, deciding and generally “being on top of it all” that those of us with diabetes have to do. 

Do you know how tiring all this thinking gets!

 Life with diabetes is all about thinking. Planning. Deciding. Balancing. Managing. Dealing with crap. Finding each and every moment of your life can be dominated by your blood glucose if you don’t watch out. Finding that sometimes, you just don’t care anymore. Just can’t do it anymore. Just can not work out how you will manage to do it for the rest of your life.

But you do.

Because as any person with diabetes will tell you, if you don’t live with diabetes, we are tough.

We are smart. In fact I would say we are brilliant.

We know our body better than anyone. We work hard. We try. Sometimes we get it right. Sometimes we don’t. We have to consider so many things that you don’t and usually we do it quietly, without fuss, so you would not even know.

We are different to you. But really we are all the same. Just people doing the best we can with the hand we are dealt. It just happens to be the D-card.

There are many hands you can be dealt that are hard. Like cancer, motor neurone disease   ( I have experienced losing loved ones to both of these), poverty, mental illness and violent families. Many things can make your life a living hell, make life much harder than that of others.

Diabetes is just one thing. We are not saying it is the hardest. We are not saying we hate our lives. In fact diabetes can make life joyful. And people with diabetes certainly make joyful lives, as do other human beings when faced with hardship.

But sometimes, it is good to be able to tell you what it is really like because usually, diabetes is something you just get on with doing.

Thanks for listening.

 

May 17 2012

D-Blog Week – topic 4 – Fantasy Diabetes Device!

Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

 

I have not thought about this before. I am not sure why.

Perhaps I have merrily gone about my 33 years of life with diabetes without wondering about devices, rather accepting what there is and getting on with using it. I know when I got type 1 and had to test my urine I felt like a leper. I know when the doctor said I now had to do blood glucose testing I rebelled, no I quite clearly stated, “I AM NOT DOING THAT”. But I did.

I know I was intrigued and quite pleased when moving from a needle which required attaching to the syringe, to an all in one syringe and finally, a pen for my injections. I know I have rejoiced each time blood glucose checking got easier, smaller, faster. And I know I worried, stressed and feared starting on a Insulin Pump but 11 years down the track would never go back. I also know that living life reliant on devices, on batteries and things that can break down or require refilling at the most inopportune moments is a life filled with stress.

But thinking about a fantasy device? I am not sure I have ever done that.

So for today’s topic, the first thing that came to mind was that I would like to say that my fantasy diabetes device would have to be quite simply a working pancreas. That is all. Is that too much to ask for? A pancreas that knows exactly when and how much insulin to release? A pancreas that does not involve wearing a device clipped to me 24/7 and cannula and line changes every 3 days? A pancreas that does not BEEP all the time, that does not require me to prick my fingers 15 – 20 times a day to tell it what to do, that does not require priming, that does not require me to take a 10 kilo handbag everywhere with spare pump supplies and needles “just in case” and that does not feel incredibly uncomfortable when I roll on it during the night?

Or how about a pancreas that does not get it wrong, that does not over or under shoot, that does not make me swing from trembling sweaty low, to desert mouthed, foggy brained high.

In short a pancreas that WORKS.

This is not a whinge. I live a full, happy and fruitful life despite diabetes and I am mostly positive. I am certainly very grateful for all the new developments in technology that enable me to live this life.

But a working pancreas – now that would be something to see in my lifetime. 

And at the moment – that would also be a fantasy.

May 16 2012

D-Blog Week – topic 3 – One thing to Improve

Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Well on the flip side of not being all that good at taking time out to celebrate my achievements in yesterday’s topic, this one I have got covered. I have been far better over my life at telling myself all of the things I need to improve, get better at, do better with and generally, at beating myself up for all of the things I said, did, or did not say, did not do, or wished I did.

I guess that is part of being human. 

I have come to learn it is also part of being a person with diabetes. We seem to be perfectionists and we seem to do an awful lot of self blame and self bashing. I am not sure if it is due to the messages we get about how easy is it to manage diabetes, about how if we just eat healthy, exercise and take our insulin/medication, check our blood glucose and be a good little girl or boy, it will all be ok. And if we don’t? WHAM. And that in fact, even if you do all these things diabetes does not play fair. That sometimes it is impossible to do these things. I challenge anyone who does not have diabetes to live the way we have to for just one day and see how it feels, what it is like.

When I started working in diabetes psychology I learnt a great trick which I try to use. When getting a high or low blood glucose reading, don’t call it “good” or “bad” as you will wind up seeing yourself as good or bad. Don’t beat yourself up about it being high or low, have your initial emotional reaction and then move on to working out what to do about it and if possible, how to avoid it next time. This works. Sometimes.

Despite knowing this and working hard to practice what I preach, there are days when I get a high reading and still think “oh my god that is bad” and I still say to myself,”you SHOULD NOT have eaten that piece of lemon cake” etc etc etc……..this is one thing I could do better – give myself a break sometimes. I seem to have this inbuilt drive to be perfect, whatever that is, in all aspects of my life. And to be incredibly hard on myself. Sometimes I feel like there must be some huge person in the sky watching over me and checking my every move off a list as I feel so god damn accountable – to who or what I am not sure. I have worked for myself, from my home base for a decade and I still get so stressed out over deadlines (which essentially I create) and making sure I “do the right thing”. To be fair, I have had some pretty big people to be accountable to – firstly people living with diabetes, then those who have provided funding for our work over the years, including the generosity of those in the community who donate their time, love and money, to my amazing family for being on the ride with me and then, to myself.

But, sometimes I wish I could give myself a break. In diabetes and in life. Just take some time to drift for a day or so, to not think, to not worry and to say “you are doing ok kid and the world will not end if you don’t manage to do 6,456,745 things today. Just be a human being and not a human doing. Be a person, not a diabetic, for a moment.

So, my one thing to improve? Pretty big. But given how accountable I am to the world? I think I can do it. After all I do have diabetes and that means I can do anything.

 

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May 15 2012

D-Blog Week topic 2 – “One great thing”

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

This is a challenging topic for me. I spend so much time talking with other people about their diabetes, their problems and their amazing achievements that I don’t stop so much to think about how I am travelling myself. As a type 1 diabetic for 33 years who has 3 boys ranging in age from 3 to 18 years I think that is pretty much my number one GREATEST thing ever. That I had these beautiful people and have managed to somehow care for them at the same time as my own diabetes, is pretty cool and the best thing in my life. It is also pretty cool that I have lived and not just lived but flourished, with type 1 diabetes for so many years.

Having worked in diabetes for a decade I know that I am also doing great things for people with diabetes. I get the warm fuzzy every time someone tells me how much my words and caring have helped them through a dark time, cleared up a question that had been bugging them, or made them laugh out loud. After so many years doing this it is simply my life. I was the proud recipient last year on World Diabetes Day of the very prestigious (In Australian type 1 circles) “Seed Award” from the amazing and totally fabulous folk at the type 1 diabetes network. This award celebrates the achievements of someone making a difference for people with diabetes and I was thrilled to get it. The guys over at the type 1 diabetes network and in particular Kate Gilbert, had a big influence on me when I got started with Diabetes Counselling Online all those years ago. They remain a vital part of the type 1 support and advocacy puzzle in Australia.

So that was a good day. It reminded me that it is ok to celebrate my achievements and not brush them off. It reminded me that people really do appreciate and recognise all the extra miles I walk along with the small group of mostly family and some other very generous people with diabetes, to support others. Take last night, I am not well, had a 3 year old to put to bed, had a Facebook chat to run in our “Rural Diabetes” group, had 2 young women with type 1 texting and messaging me at the same time and another mum of a type 1 with some questions. All of this when I really wanted to watch the first battle rounds of “The Voice”!! AND I had a day where my own diabetes did not play fair. I spent the entire day hovering between 16 Mmol (288) and 20 mmol (360) – no matter what I did – pumped more insulin, changed the site, did not eat….you know the days. And then of course I was low by bed time and spiked again overnight to you guessed it, 16 mmol (288)…..so among all the lovely moments of my life I am surrounded by diabetes – my own and that of many, many other people. And you know what? I do not regret or wish away any of it. 

I do sometimes need to stop and give myself a pat on the back. Give myself a hug and say well done, you are amazing. My Endocrinologist once said to me that living with type 1 diabetes is a full time job on its own. And he was right.  Motherhood is also a full time job. So I guess with these two jobs, plus running a national counselling service, diabetes wellbeing retreats and just starting my PhD – I pretty much have all my time covered. Not wasting a second.

Thanks for making me think about it guys.

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May 14 2012

Breakthrough in diabetes!

There are so many “breakthroughs” in diabetes, so many times we hear they are close to something that never quite gets there. And then there are all those “cures”; all those”facts” about how various foods, fruits, Amazon rainforest leaves, spells and potions will “CURE YOUR DIABETES!”. Or the really great one about how a special form of crystal healing can reverse diabetes, of any type.

So, today we are bringing to you 10 reliable, well tested and found to be true FACTS about diabetes:

1) When you drop a blood glucose finger pricker somewhere it will always land in a parallel universe that you can not see

2) When you want to go and exercise on the spur of the moment, you can’t

3) When you go to bed and your blood glucose is 6 mmol and you decide you might go low over night so you eat something just in case, you will wake up high and find you did not need to eat. When you go to bed the next night and your blood glucose is 6 mmol and you decide not to eat coz last time you did not drop but went high, you will wake up in the night at 3 am all clammy and sweaty and feeling like death as you are now low

4) When you have a hypo and are really craving something in particular, it will not be in the house. When you have a hypo and are really craving something in particular, it does not really matter as ANYTHING can taste like the best food ever created when you are in a hypo feeding frenzy

5) We will all experience at least one unstoppable hypo eating frenzy – enough said on that one

6) Finger prickers will not be changed every time we do a blood glucose check, nor will we wash our hands EVERY time we do a check – last time I checked people don’t carry sharps containers and basins everywhere with them

7) Sugar is not the enemy

8) Spontaneity is overrated but it would be nice, just once

9) The world does not understand the differences between types of diabetes and probably never will

10) People with diabetes may not have a functioning pancreas – but we have one hell of a strong combined heart.

May 14 2012

Diabetes Blog Week – jumping in!

The third annual Diabetes blog Week. What a fantastic idea! Thanks to Karen of Bitter-Sweet we are jumping into it!

 

I love the idea of lots of people with diabetes sitting down and writing about life with diabetes, all at the same time! Over here in “Oz” we don’t have as many people putting their voices out there as they do in the US but we do have some wonderful ones.

The first up topic is to write about other people’s blogs and bring new ones to the table so people get to see the whole array of voices that are out there. The thing is, a lot of the blogs that I read are already listed as some of the best known, top rated ones, so I am not sure that I can add a lot to this topic. What I am going to do is post about one of my favourites by an Australian blogger.

I have been blogging for quite a while but not as long as I have lived on the Internet and definitely  not as long as I have lived with type 1 diabetes! Internet = a decade delivering free counselling for people with diabetes via the charity I started Diabetes Counselling Online and type 1 diabetes, well that = since way back in 1979 when blood glucose monitors were not in every day use and pork insulin was the mainstay.

Since I have been working online over the last decade and in particular since we started hopping around places like Facebook quite a few years back, other Aussies have begun to realise there is a big online community of people with diabetes out there.

One of my favourite Aussie blogs is from Renza. Renza has lived with type 1 diabetes for a very long time. She has also, like me, worked in diabetes for a very long time and uses her personal experiences to drive her passion for supporting and advocating for people living with diabetes.

Like me, she is a mum with type 1 diabetes and topics about life with a young child become intertwined with topics about life with diabetes. If you are a mum with type 1 diabetes you will know what an amazing, tiring, scary, frustrating but totally and utterly rewarding journey pregnancy and motherhood are – definitely a topic worth blogging about.

Renza and I seem to live twin lives in blogland, often finding we are blogging at the same time and often about similar topics!  Renza joked the other day that we will have to stop doing this or people will talk and I replied “let them!”.

The cleverly named blog “Diabetogenic”  chronicles Renza’s life with diabetes in an often funny and easy to read way. I find it very easy to connect with what Renza writes and feel a connection to her not just in blogland, but in diabetes solidarity. 

Looking forward to the week!

May 11 2012

Dear Diabetes

Dear Diabetes, even with you in my life, see what I can do?

Dear Diabetes

I have not written to you before and thought it was probably time that I did, seeing as we have been living in the same body for 33 years now. I am the one you screw around. The one you make your slave. The one you watch prick my fingers 15 times a day, push needles into my stomach. I am the one who tends to you, tries to work around you, feeds you with insulin, worries about you, takes you everywhere I go. My mind is the one that got messed up when you first came to live with me when I was just a little girl and the one who shouts at you every now and then.

We have been through a lot you and I, there were all those years when I did not treat you very well. I remember how I starved you of your need for insulin injections. And how I used to eat too much, drink too much and try to pretend you were not there. Just so you know, I was not ignoring you it was just that you made my life hell and I was not sure I would ever work out how we could have a happy relationship.

I really hope you appreciate how much room I have made in my body and my life for you. If it was not for me, you would not even exist. And in some strange way, although I often wonder what it would be like if you left me, I know if you did not exist I would not be the person I am today. I am not sure what you think, but I do think we are doing ok mostly. I would not say it is a match made in heaven, but I have become used to you. I am not sure how it would feel not to have you in my life. I am not going to apologise for the days where I get angry, frustrated and upset with you. I think anyone would understand given how hard you make me work. I mean what other relationship never lets you rest? Never lets you eat, sleep, exercise, travel, work, play, get sick, get your period, have babies, walk through each and every day of your life, without a break?

And, what other relationship holds over your head ALL the time, the fact that if I don’t look after you, you will shower me with all the horrible complications you can bring to my life. You have already brought me some of those. I will not thank you for that.  I am not sure if you are trying to punish me for not caring about you when I was younger. I am not sure if it is your fault, my fault, or a combination. I am glad that you have seen fit to let me keep my eyes, my kidneys and my feet, for now. I really wish you would not try to scare me with these threats, do you know what that does to a person’s mind?

And while we are at it, one thing I would love to ask is why you don’t play fair? Have I not treated you well, mostly?  I mean honestly just when I think I have you sussed, you turn on me and make life difficult. You would think that by now, you would be easy to handle but there are some days where I just don’t get you. You are certainly a tricky thing, just saying.

If you could, please try to stay consistent. I do not appreciate working out how to deal with a certain food just to have you stuff it all up the next time I eat it. I do not appreciate you being quiet and calm one day when I exercise and trick me into thinking I have it worked out, only to jump out at me from nowhere the next time I do exactly the same exercise and drop me on  my ass with a low blood glucose – stealth attack I call that one. And I do not appreciate how you interfere in everything I do. I have never met anyone who is so over involved in another person’s life. Could you please give me a break sometimes?

One thing I can say is that despite the ways you have tried to make me suffer, I have been able to conquer you so many times. Just look at my 3 beautiful children. I bet you thought I would never be able to do that with you around. Got you there! Oh sure you made it hard, actually it was an epic, difficult sometimes traumatic, exhausting, but ultimately beautiful experience. You tried your hardest but in the end I won. That is because, dear Diabetes, you have made me a better and a stronger person than I would have been without you. And for that I thank you.

So, if you have anything to say to me, I am sure you will. You are really good at making your presence felt, even when I try to ignore you. I am sure I will see you soon. Probably the next time I prick my finger and watch the countdown to see how much you have a grip on me at that moment.

See you soon.

yours in pancreatic failure

Helen