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

May 10 2012

In celebration of Mum

Mother’s Day has never been big in our house. In fact we see it more as a commercial “Hallmark” kinda thing. We do believe firmly in treasuring the mother’s in our family each and every day however. And I do get my Mum some flowers, as does my hubby for me. I must say it is a nice excuse to get flowers which happens twice a year on Mother’s Day and our wedding anniversary.

The women in our family are strong, beautiful and smart. Both my grandmother’s migrated here from England with young families in tow. Both came to this country for a new, bright, shiny life and found that it was not as easy as they had been made to believe by the brochures. Both had loving husbands who worked hard to make sure their families did have a “better” life. And so they did.

I remember as a young child living in a town where one set of grandparents lived and a just short drive to another town where the others lived, all the wonderful, warm and loving times we had visiting and staying with them. There are some hilarious stories, where my maternal Grandma on a mission would cook mountains of bacon, eggs and toast, piling them sky high, way before anyone actually got up! This made for rubber eggs, cold toast and congealed bacon but, it was delicious! She and my grandfather were gypsy’s, travelling around the country and having adventures and they were so exciting! One of my best and earliest memories was going as a little girl to where my Grandma was teaching at the kindy and being so proud as she played the piano, sang songs and played “Heydey Heydey Ho, the great big elephant is so slow” because she was MY grandma and she was and still is, amazing. I remember staying with my paternal grandma and sharing secrets. She was always so glamorous and at 97 she is still living at home and still as sharp as ever. We have a special bond and in particular this grew after we had a major car accident when I was driving and nearly killed her. There was a bit of “what happens on camp stays on camp” that day. I also remember playing hours upon hours of yahtzee with her, but never winning and sitting in her tiny, hot kitchen where she had cooked a full English roast WITH Yorkshire pudding, in a 40 degree heat wave!

What I remember most is the pride, care and gentleness in which these women loved and still do love me today. I am very blessed to still have 2 Grandmothers and an amazing Mum of my own.

Now my Mother is indeed another entire blog. She is my idol and my mentor. With only 20 years difference in our age, sometimes it feels like we are best friends but at other times strictly mother and daughter. She is smart, funny, beautiful, caring, sharp and sometimes a little bit eccentric! She tells me how much she loved being 20 and having a baby to play with, despite the fact my parents had no money and life was not easy, they were happy. She was there with me through every moment of my life. Some good and some not so good. I remember countless family holidays and expeditions, laughter, adventure and most of all love.

Of course a major moment in our lives was the diagnosis of my type 1 diabetes. My Mum was the one who was suspicious about this. She was the one who took me to the doctor and was with me when we got the news ” she has type 1 diabetes”. She was the one who stayed by my bed for 2 weeks while I was in hospital. She was the one who changed the entire family’s eating habits to meet my new diabetic needs. She was the one I turned to when I was scared, sick, tired, angry, hurt and everything in between. I slept with her jumper when she was not around so I could drink in her smell. I got homesick when I went anywhere, ever and had to be picked up in the middle of the night. I argued and drove her crazy as a teenager with type 1 diabetes taking countless risks and making her life hell. I struggled with the fact she and my dad were my teachers in high school and wanted to get away from them for just a moment. I called her when I left home at 17 with type 1 diabetes to go to the city to study and was terrified. In all the ups and downs of my life she was there.

In recent years she joined me in my work in diabetes and we have had adventures both at home and in other countries in our work together, seeking to help make life for other families affected by diabetes just a little bit better. She stays firmly by my side helping support other people suffering with depression, diabetes burn out and just feeling lost with it all.

And finally, she is the one who taught me how to be a Mother.

So now we come to my journey as a Mum. When I was diagnosed with type 1 diabetes as a child I was told I would never have children and if I did, they would be deformed or worse still, not survive. I grew up with this in my heart. However I was a girl born to have children. I asked my Mum when I was about 14 if she would pleeeeease have another baby! But of course she was not going to do that! So at 26 I did have a baby. And he was perfect. And then I had another 2 over the next 15 years. Again this is a whole blog on it’s own and I have written one on it.

Today I want to celebrate my children. I now have 3 boys ranging in age from 3 years to 13, to 18 years and they are the best thing in my life, no argument. I love their smell, the feel of their skin, their boy brains, the way they talk to me, their jokes, their cuddles, their respect for other people, the way they see the world and most of all the way they love me. Having them at 3 different stages of life, one just 3 and a half, still needing me very much in fact wanting to be on top of me all the time with his messy fingers, sweet smell and imaginative worlds; one 13 just starting his journey into growing up, at high school and dealing with the onslaught of hormones, with such a passion for the world and for learning; one 18 just finished school and beginning his journey as an adult, navigating his way through all of the responsibilities that suddenly land on your lap, but still needing his mum.

These 3 human beings are the centre of my world. I love how they understand my diabetes. My 3 year old Maxwell just the other day was hugging me and clambering on my lap and said ” I want to kiss your pumpy” and planted a big kiss right on my insulin pump. Does he somehow know it is what keeps me alive? Their constant chatter, noise, mess, needs and love, is what keeps me alive. And I now know that all the stress, trauma and worry I put my Mum through would have been worth it to her. Not that she wanted or enjoyed it, but I know now that as a Mum, you take the good with the bad, you love your children no matter what and you love them fiercely. You forgive them. You give them second chances and third and fourth and however many it takes. You quietly get on with what has to be done. That is what being a Mum is all about. And the rewards are endless. You get to be the one who has the best cuddles. You get to be the one they tell their secrets to. You are The One.

So on Sunday I will celebrate Mother’s Day. Not with diamond rings and whitegoods but with love and celebration of my grandmothers, mother, children and all the other women I know who sit up all night with vomiting children, console broken hearts, cry on the first day of school and the last, sit up working out how to afford new shoes or the school camp, clean up all the mess without complaint, sing songs, watch the same DVD over and over, roll in the dirt, cook the meals, make the lunches and fill their homes with love. And if your child happens to have diabetes? We both know you will also be the one waking up to do the 3 am blood glucose check and dealing with the hypos and the ketones and everything in between.

I salute you all. Happy Mother’s Day.

May 8 2012

Reality or ?

I love reality shows. I mean I really love them. Well some of them. I am a total sucker for anything relating to singing such as the latest installment “The Voice”.  I have been a dedicated Idol fan and have even ventured into the X-factor and others. This stems from my unmet desire to spend my life as a singer and my passion and need, to sing. I love singing. As all the contestants say as they stride up with sweaty palms and faces full of fear “it’s what I do, it’s all I ever wanted for my whole life (even if they are only 16), it’s just something I HAVE to do”. Yes if I am stressed, sad, bored, angry, happy or anything in between, a good singing session makes me feel totally at peace. And I pursued it for a while. As a young person I was told to keep pursuing it. But babies and life, got in the way. This does not however stop me from singing or enjoying music. The last time I checked it costs nothing to open your lungs and sing.

Other reality shows I have been known to be drawn in by include Survivor ( I LOVE the host Jeff Probst ). There is something about the idea of being shipwrecked on a desert island that is compelling, even if it is along with a massive crew, a medical team, cameras in your face and a cute host. What I think it is about this one is that it is actually incredible how these people survive. And I wonder how some of those girls manage to make a bandana into a skirt. And of course there is all the infighting and back stabbing – television gold.

I am currently hooked on The Biggest Loser. I find this one tricky. As a person who has been overweight, very overweight and a health care professional working in diabetes, I know that the way these people lose weight is definitely NOT reality. Nobody in life gets to spend 6 hours a day training, locked in a house with no distractions, with buff trainers working your ass off and not allowing any potatoes or bread (didn’t you know those things are evil?). But there is the Commando…….and the tears and amazing human stories and ways that people open up their hearts and talk about their lives. Despite all the contrition, continual repeating of scenes after ad breaks (seriously do you think we are so dumb we lost memory of what happened 5 minutes ago and need a refresher?), manipulation and knowledge about how these shows are set up – it still makes me cry. And you can bet I will be front and centre tonight at the big reveal.

 

Yes I have also watched a few seasons of Big Brother, although I am not sure I will be able to stomach it this time around. (but who am I kidding I am bound to have a peek); Race around the World: various versions of rennovation and building shows and once, just because I knew someone in the show, Masterchef. Cooking shows are the ones that puzzle me the most. People salivating, crying and arguing over cooking a pavlova really does not rock my boat. Perhaps it’s because as a person growing up with type 1 diabetes food really has a different meaning and I have a different relationship with food than your every day person. Those of you who live with diabetes will get what I mean. And since developing serious issues with diabetic gastroparesis food has become something I just need to get in to my body. I am still dealing with the grief of losing the pleasure of food. Or perhaps it’s because at the same time this is showing we are watching obese people who were also obsessed with food, try to lose all the weight and change the way they relate to food. Or the fact there are so many people in the world who simply have no food.

I was thinking that maybe the reasons we love “Reality TV, is that it is not reality. These shows are more like “unreality”. They are more like dreams. Things people would love to do, to have happen to them. What you love depends on what you wish you could do, have or be, in your life. And of course there is always the prize money and the very short lived celebrity status that comes with a good reality show.

It does bother me that this has become pretty much the primary source of television programming – oh except for violent crime scene shows, but that is another whole blog. I wonder if it means people want to live in a dream world at the end of the day, to watch other people living out their dreams rather than go for their own dreams.

If I could make the perfect reality show it would have a cure for diabetes, along with all the other terrible diseases, no poverty or hunger, no war or violence, everyone with enough and caring for each other and the planet. But perhaps that reality show is too far out of our reach.

See you on the couch.

May 4 2012

One plus one does not always equal two

I have come to the conclusion after 33 years of living with type 1 diabetes and more than a decade speaking with and listening to the stories of hundreds and hundreds of people living with diabetes in all its forms, that in diabetes, 1+1 does not always = 2. 

If you listen to the often well meaning folk who tell you diabetes is a simple equation, you will be greatly misled and sadly suffering guilt, frustration and all sorts of other hard stuff, on the days when this equation is blown out of the water.

As far as I can see, this is particularly so for those of us living with type 1 diabetes but I also know my lovely type 2 friends and family who have these days. 

I once asked my Endocrinologist about this and in his words it is because “insulin is an imprecise science”. The bottom line is that thanks to the amazing Banting and Best we now have insulin. Thanks to all of the wonderful researchers and pharmaceutical companies developing better types of insulin all the time and better ways of delivering insulin, we now have better quality of life. But – this does not a pancreas make.

You know those days. The ones where you wake up and for no reason known to diabetic kind the meter, one of your best and most hated friends, beeps and says “20 mmol” (360 mg/dl) . The days where you do exactly the same as any other day yet suffer a number of hypos. The days where you swing from one extreme to the other. The days where you want to throw in the towel, have a time out, turn into someone else, run away, or simply scream.

These are the days where a good friend in the DOC (diabetes online community) can really be your saviour. 

Often there are reasons. Reasons such as hormones, stress, a virus coming on, a bad night’s sleep, delayed emptying of food into the blood stream, a dodgy injection or pump site, insulin that is off, old or the cloudy type insulin’s that are dodgy in how much you actually absorb each time you inject, varying levels of activity, the time of day, how long you have had diabetes, a guesstimation of carbs in the meal you ate because nobody ( and I have experimented with this at conferences with a table full of diabetes educators and dietitians) could possibly tell exactly how much carbohydrate was in the meal you just ate, an over bolus because you were sure the last time you ate this your blood glucose went up, forgetting to take insulin or not taking enough, excitement, your age, the weather, because it’s Thursday.

Oh yes there are often reasons, but they can be reasons that are impossible to find or understand – or simply the biggest reason of all – injecting insulin is not a substitute for the amazing way the human body runs things.

So that is all. Some days are diamonds – you know the ones where you wake up with a blood glucose of 4 mmol (72 mg/dl) and all the decisions you make about food, exercise, activity levels, which way to go to work, how much to have for lunch and what pair of shoes you want to buy – all fall into place and you have a smooth ride. Other days? These are the dog days. The ones where you wake up high and spend the day chasing your tail, up and down, until you are shattered, angry and sad, all at the same time.

If you are having a dog day today try to hang on to the fact that there are others of us out here having one right along side you. And, who knows, tomorrow might be a diamond day. Just depends on whether the diabetes fairy decides to sprinkle her blood sugar dust on you while you sleep.

May 2 2012

Journey into Cyberspace

When I started Diabetes Counselling Online, all those years ago in 2001 when the Internet was a new idea and people had zero idea about using it for anything much, let alone delivery of health services and information, I struggled to find anything to guide me. There were a couple of Australian websites offering counselling and a number of American Counsellors offering paid e-counselling. There were no guidelines other than some International ones and so I set out into the great unknown.

Even then, the DOC or Diabetes Online Community, was quietly beginning. Yes, health services may not have grasped this new technology very quickly, but there were some people living with health conditions like diabetes who were standing up and taking notice, along with us. The wonderful Reality Check now the Type 1 Diabetes Network http://www.d1.org.au/ was an inspiration to me in the way that young people with diabetes had begun their own network of support and a place to gather. Still, nobody was offering professional counselling online in diabetes and certainly not professional counselling from people who happen to have diabetes themselves, for free.

Surprisingly this remains the case. Diabetes Counselling Online is still the only service I know of that provides free web based counselling specifically to people with diabetes. What makes us unique to the many other diabetes sites now available, is that we still provide a totally personal and individual e-counselling service, for free.

When Facebook and Twitter moved into the mainstream, we jumped before many and we have always been right in the midst of the opportunities to communicate and connect with people living with diabetes.

Of course there is now a huge DOC and many wonderful people blogging, sharing and setting up groups and places for people to connect and find the support they so desperately need. And here we sit, quietly getting on with what we do. Each new story that comes to our inbox, is posted on a Facebook group or our forums, gives us the desire to keep going. Each time a person tells us about how sad they feel at times, the many ways they are trying to make sense of diabetes, how it gets its fingers into every corner of their lives, how alone they feel, how frightened, worried, guilty and frustrated, it gives us an injection of passion and reminds us that we do this simply out of a desire to make a difference.

That is what amazes me every time I read a blog, see a post or comment somewhere in this wonderful place we human beings have created – how much people can share concern and yes, even love, via typing words on a computer screen and sending them through cyberspace, I hope the cynics who used to say a decade ago when we started “but HOW do you do counselling via EMAIL?” “How can that WORK?” have well and truly realised that it is no different to sending a love letter to someone via a boat at sea, although it is a little bit quicker! I hope people see that despite the nasty, dark and scary places that the Internet can take people, that there are many corners of the Internet that are bright, light and welcoming- where you can pull up a chair, grab a cuppa and feel connected, feel less alone, feel home.

This has been a wild ride for us, this journey into cyberspace and the world of diabetes online. We have both forged pathways and watched it blossom. We have been pushed to want to give up and then been pulled right back in by a mother asking for help as she cries for the fear she has about the future of her child with diabetes, a young man who is struggling with how he will manage his life with this disease, a woman who has spent her life hating herself and now feels the weight of guilt pushed down her throat because not only is she fat, but she now has type 2 diabetes, the many hundreds of voices from people who just don’t have anywhere else to be heard, who feel they can not ask these questions anywhere else, who feel that if they do, they will be not heard.

We do not push our barrow, we are not ones to stand up and talk about all of our achievements and perhaps, that is why we are still a small group of people trying to keep things afloat. But I can tell you one thing, perhaps because we live it, because we know what it feels like to ride the roller coaster, we have one hell of a huge combined heart. And that my online friends, is the heart of diabetes.

Mar 27 2012

Do you need to walk a mile in their shoes?

ImageI was at a diabetes event put on by myself and my partner with our Diabetes Wellbeing Services the other day and had a realisation – It does not matter how much you think a health care professional understands, no matter how caring they are, how well you know them,  how wonderful they are in their passion and work for people with diabetes – they don’t truly understand what life with diabetes is like.

Now this may seem simple, obvious, an “of course” kind of thing. However having worked with some amazing people over the past decade who are really passionate about the wellbeing of people living with diabetes, I had come to presume they were on the same page as me. To some degree this is true, but what transpired on this night reminded me that there are things abut life with diabetes that you can not learn from a book. You can not learn from having an in depth conversation with a person who does live with diabetes. You can not learn from doing a PhD. Does this matter? Perhaps not. But maybe it means we still need to hear a lot more from people with diabetes and their families and not so much from those who tell us how people with diabetes “should” manage their diabetes and their lives.

The event was “Perspectives on Pumping” – my idea was that health care professionals usually put themselves up as “experts” and talk to each other at seminars and conferences with great certainty about what it is really like to live with diabetes. At our event we put the people on pumps up as the “expert panel” to tell the health care professionals and pharmaceutical reps, what it is really like to go on a pump. This had amazing outcomes. One woman, who was new to selling blood glucose meters and has zero previous experience of diabetes, ended up in tears after listening to people on pumps and their parents talking about their pump as their “life line”, the stress, anxiety and sadness of diabetes, as well as the drive and energy they have to live healthy and happy lives. She tells me it took her 4 days to recover from the evening and that she had been in the camp of thinking diabetes just needed healthy eating and exercise and “she’ll be right mate”…..What an amazing introduction for her to a diabetes event.

Other moments were listening to the passion of the health care professionals and how much they want to make life easier for the people they see. How much they fear “doing the wrong thing” and want the relationship between health care professional and person with diabetes to be a true partnership – with both having rights and responsibilities.The biggest revelation for me came when my partner told me the next day she had never thought about the Pump as being a person’s “lifeline”. She and another colleague who are some of the most amazing diabetes educators I have met and truly tuned into the wellbeing of life with diabetes – had never thought about it like this………wow…..

I wondered what they had thought the relationship with your pump is like then? I imagine they just see it as a piece of technology to assist people with diabetes to get the best outcomes. Maybe I need to ask them this question. As a Pumper my relationship with my Pump is very personal. And I often feel reliant on technology for my life and can feel anxiety about what would happen if things broke down, especially when I am far from home.

Even when health care professionals listen to people with diabetes voices, such as listening the stories told by people living with diabetes and sharing this – the fact remains that true understanding comes only from experience. Even then I question whether we can ever really know anybody but ourselves as it is only our own personal experiences and mind that we can most truly connect with.

Does this mean you can not be a brilliant diabetes health care professional if you don’t live with diabetes? I don’t think so. But I do think we need to have more of these events, where people living with diabetes, their families, health care professionals and the pharmaceutical industry sit and talk. Really talk, listen and share. It can only be good, for all of us,

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