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diabetes tales

 

MIMI

I’m Mimi.
Daughter. Sister. Granddaughter. Friend.
Wannabe vet & farmer.
Frustrated horse rider.
Reluctant pianist.
Enthusiastic singer.
Elegant ballerina.
Thrill seeker.
Animal lover.
Trainee pancreas.
Which is the last thing you need to know about me. Because I’m not just a T1D diagnosis.
I’m a 10yo girl.

Mimi

 

Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!

 

diabetes tales

 

ASHLEY

I felt my life shatter when I was told I had diabetes. I didn’t know much about it then, and felt so alone, scared and broken. It took me a long time to accept it and find beauty in cracked glass from the Diabetes Online Community.

Ash

You can read more from Ashley at her blog, Bittersweet Diagnosis.

Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!

Someone said to me yesterday that it seems that I only ever eat doughnuts and Nutella. Or doughnuts with Nutella. This was in response to a photo I posted on Facebook which showed the kiddo and a couple of her friends being shown how to make Nutella spring rolls*. Actually, it was in response to most of the photos I post on Facebook which may or may not be of doughnuts and Nutella.  Whatever!

People seem to love pointing out what they consider to be the irony of a person with diabetes having such a strong love of fried sweet dumplings. It’s possible that the happiest day of my life was the day I discovered Doughnut Plant in New York.

But there’s no irony as far as I’m concerned. I love a good custard bomba, sugar-coated zippoli or jam-filled doughnut. And I have diabetes. And I have an insulin pump and I know how to use it! I must have missed the day at diabetes school where we were told we couldn’t eat doughnuts.

We are told that there is no such thing as a ‘diabetic diet’, yet the mixed messages we receive about what we ‘should’ and ‘should not’ be eating only lead to judgement and accusatory questions such as ‘should you be eating that?’ The stigma associated with diabetes and the media’s misrepresentation of all people with diabetes as overweight, lazy, fast-food-guzzling machines perpetuates the myth that food for people with diabetes should be cardboard-flavoured and devoid of any enjoyment.

Well I say screw that!

For the record (and in a pathetic-and-less-than-half-arsed attempt to justify my eating habits), I actually do enjoy an incredibly healthy diet. I cook most days and there are always lots of fresh vegies and lean meat on my plate. But there is no fun in posting a photo of chicken paillard with rocket, avocado and walnuts. As delicious as it may be.

beignetsToday is Mardi Gras and whilst I can’t be in New Orleans to join in Fat Tuesday celebrations (if only!) I will be thinking of beignet – the pillowy, fried and sugary doughy delights that I enjoyed in great quantities at Café du Monde when I visited the great NOLA last year. And at some point today, I hope to have one or three (with a side of insulin), sprinkling icing sugar down my front as I wave a handkerchief, walking the second line as Melbourne celebrates Mardi Gras in our own way.

Also – here you go! Some Disney and Dr John magic for your Tuesday.

Nutella Spring Rolls

Add a dollop (about a teaspoon-full) of Nutella to the middle of a spring roll or wonton wrapper

Fold in the sides and then roll into a cigar shape

Seal edges with egg

Fry in vegetable oil

Sprinkle with icing sugar and eat while hot

Enjoy

Bolus as required (either using a pump, pen, syringe or working pancreas)

I couldn’t be more excited to receive this in the mail today:

Kerri book

 

And I couldn’t be more proud of the wonderful Kerri Sparling who I am lucky enough to call my friend.

Renza & Kerri Brunetti

Run, don’t walk, to order your copy of Balancing Diabetes now!

For the first time in a while, I woke this morning feeling rested. I realised that it had been some since I’d had a solid night’s sleep without getting up for anything. And it felt good!

I’ve always been someone who can fall asleep at the drop of a hat. Sitting in the passenger seat of a car for more than 20 minutes is all it takes for me to doze off (I’m really not a great driving companion). And I think that in all my travels I’ve been awake for take-off maybe twice. The second the plane starts taxiing, I’m asleep. Caffeine doesn’t affect me and I can sleep in bright light and through loud noise.

When I was diagnosed with diabetes, one of the most difficult things to deal with was the need to wake at a certain time (much earlier than I was used to) so I could have breakfast and take my first insulin shot for the day. I can still remember the relief I felt when I started using a pump and could go back to sleeping away half the day if so desired (as it often was).

I worried about how I would cope with the promised sleep deprivation that a baby would bring, but pure luck delivered us a baby who slept through the night from an early age and who, even now, sleeps in on weekends and over holidays and knows to leave the grown-ups alone if she rises first.

But lately, sleep hasn’t been coming easy.  Between the heat (and resulting hypos), getting used to sleeping in a new house and waking due to pain in my right eye following my second cataract surgery, I haven’t really had many nights of restful slumber. Plus, it doesn’t help that the allure of ‘just one more episode’ of Breaking Bad is reducing the number of hours spent in bed.

The nights disrupted by diabetes result in days disturbed by diabetes. I find myself yawning and finding excuses for more coffee to try to keep me alert. And I think about sleep – and then stress because I’m tired and not sleeping properly. I feel sluggish and slow and find it difficult to stay on task. And I spend most of the day banging on about how tired I am because I didn’t get enough sleep.

Which, apparently, is the problem.

I read today that just thinking about sleep positively can impact on performance. This study published in the Journal of Experimental Psychology says that complaining about not getting enough sleep is the reason that performance suffers – not the actual lack of shut eye. There’s a placebo effect for you!

I’m not sure if that’s true, but given the number of nights diabetes does reduce the hours of sleep I get, perhaps some positive thinking is in order. Diabetes unfortunately means that there are nights of broken sleep. Maybe instead of complaining about it, I just accept it and think about the time I was actually dreaming and how good that was. Or look forward to the sleep that’s coming up.

Also, maybe a limit on the number of Breaking Bad episodes would help too. Just saying.

This week, the new school year starts for many kids and teens in Australia. I proudly watched our big nine-year-old walk into her new classroom – seemingly confident and secure. As parents, we know that with each passing year, we have to hand over a little responsibility as our kids grow up. We need to foster their independence and celebrate it, even at times when we want to bundle them up and try to protect them from the big bad world.

Today, my dear friend Catherine Forbes, writes about how her family is navigating independence with their fifteen year-old daughter who just happens to have type 1 diabetes. I love Cath’s attitude and approach because raising her beautiful girl isn’t about diabetes. It’s about helping her daughter be the best person she can be. Diabetes or not, I think this is relevant to all of us. Thanks for writing, Cath.

One of the most amazing things about watching your child grow up is seeing them take on their own responsibilities and realising that, even without you, they will thrive.  It’s no different when your child has type 1 diabetes.

For the past ten years, it’s been my job to look after my daughter; to keep her safe; to keep her alive. I’ve been the one testing, injecting, doing site changes, making adjustments and going to appointments.  I’ve been the one checking the carb count in every piece of food that she eats.  I’ve been the one nagging.  I’ve been her carer – and it’s been the most important job that I have ever done.  Sometimes, it’s extremely difficult to let go of that.  It becomes our identifier.  It’s who we are.

Cath

Cath and her daughter

But, I’m here to tell you that ‘letting go’ is so worth it, so rewarding and, ultimately, the best possible thing that you can do for your child.

Now, I’m not talking about handing everything over to them and walking away.  That would be a disaster.  What I’m talking about is slowly letting go of the control that we have, allowing them to make their own decisions and their own mistakes.  Allowing them to learn how to look after themselves safely for the rest of their lives.

Let’s face it; as much as we joke about them having to build a granny flat for us when they move out, the reality is that they are likely to be living on their own at some stage.  Possibly living with friends or a partner.  And certainly – not with us.  We want them to be confident and competent in their own care.  We want them to know what to do in any given situation.  And we want them to live happy lives.

Twelve months ago, we began consciously working on this transition time with our daughter.  She was 14 years old and had just been selected to tour the United Kingdom and France with her school netball team.  Even though she would have teachers with her for the tour, we wanted her to be confident enough to look after herself while she was away.  I made sure that she knew that I was there for her if she needed me and, nervously, handed over the responsibility for testing, carb counting and bolusing her insulin.  I did not ask.  I did not nag.  I cut back on the night time testing.

I admit to you all that, as we approached her quarterly visit to Diabetes Clinic, I feared that we would see the worst HbA1c ever.   It was a tough lesson – but also one of the proudest moments of my life – when she presented her best result EVER.  She had taken control.  She had stepped up.  She had set her own alarms to test during the night or she had asked me to check on her.  She had worn her Dexcom CGM and taken great interest in the effect of different foods and activity on her blood glucose levels.  Essentially, she was doing this on her own.

Stonehenge

Cath’s daughter at Stonehenge

When September rolled around and we waved her and her school mates goodbye, we knew that she was going to be just fine.  And, more importantly, SHE knew that she was going to be just fine.  For almost three weeks, I did not know her levels – not one of them.  I didn’t know what she ate or what activity she was dealing with.  And, when we spoke via Skype, diabetes was not mentioned once.  She told me about her adventures and the people that she had met.  It was magical.  A huge turning point.

Now, she is still driving her own diabetes management.  Several weeks ago, she told me that she wanted a pump holiday.  She asked me for guidance and I showed her what needed to be done.  In the past, her “holidays” have barely lasted a week.  Now, with her in the driver’s seat, she is entering week four on multiple daily injections and she is doing great.  I don’t know what all her levels have been but she is happy with them and that’s all that matters.  I see her testing.  I see her injecting.  I know that she is going to be just fine.

I know some remarkable and inspirational young people who just happen to live with diabetes – and I know that my daughter will be in good company in this community.  She too will be an amazing young person – taking life by the horns and doing whatever she chooses.  Diabetes is just a tiny part of the incredible woman that she is.

Catherine Forbes is a mother, advocate, volunteer and peer support mentor. You can follow her on Twitter here.

Trying to cut the chatter in our busy lives is near impossible. There are so few times that we are ‘off’ and for me there is a constant white noise keeping me company. There are very few moments in my day when I am not in some way having a conversation of some sort with someone – or multiple people. In a five minute period I could be speaking in person with someone (or some people) while answering phone calls, listening to voicemail messages, sending SMS messages, Skyping someone, sending photos via MMS, answering and sending Facebook messages.

And at the same time, it’s possible that I’m taking a photo of my coffee, updating my Facebook status (This coffee is awesome!) and sending a tweet or two (Great coffee from new café in Melbourne’s inner-North) all while adding the picture to Instagram.

There is no silence in there. No gaps.

This last week, I’ve taken a step away from some of the noise in an effort to try to find some calm. With my eyes still not one hundred per cent, simply grabbing my phone, swiping to awaken it and checking Facebook, Twitter, email, SMS messages etc. is not so simple anymore. Glasses need to be located and put on and then I can start. It’s not as instant anymore. And because of that, the habit is slowly, but surely changing.

It took the better part of the week to deprogram myself.

I’ve realised that this is something that needs to be done consciously. Yesterday, at lunch at an outdoor café with a large group of friends, I looked over to where our kids were sitting on the ground in the shade. There were about 12 of them, all gorgeous, fit, sun-kissed kids who are more than capable of holding a conversation. And they were sitting in a row, not conversing, not playing, not teasing and joking with each other. No. They were all looking at their own iDevice. Totally enthralled and engaged. Just not with each other.

As someone who is permanently attached to my iPhone (seriously, if I had to make the choice between life-saving-insulin-delivery device and I-can-connect-to-the-whole-wild-world-all-the-time device, it would be a difficult decision) I am certainly not saying that technology is the end of civilisation. I’m not demonising our connectedness and if the truth be told, being able to reach out and ‘see’ someone from the DOC at any time is incredibly reassuring to me.

But is it the end of the world if I don’t know that the New Yorker Facebook page has just updated its status with a new cartoon? (Probably not, but this one is hysterical!) And really, even though it can be incredibly frustrating if I can’t remember the name of an actor in an episode of Breaking Bad, it will not kill me if I don’t IMDB the answer straight away!

So – I’m trying something new (as promised earlier). I am going to try to detox the constant chatter from my life. It’s not about going cold turkey, deactivating my Facebook page and leaving the Twitter community. It’s about boundaries. It’s about giving attention to the people I am with at any given time. But more than that. It’s about giving myself time. And space. And silence. Because sometimes, the answers are found there.

Just after I wrote this piece, I read this Huffington Post blog. I totally get it!

How are your New Year’s resolutions going? I read something the other day that most men who resolve to lose weight in the New Year have given away their diet by 2 January. Way to commit, guys!

The reason most of us fail when we make resolutions – at any time, not just New Year – is because we’re unrealistic about what we’re hoping to achieve. We grandly make claims that we will reinvent ourselves in ways that are simply destined to fail. We get disillusioned at the lack of progress or disappointed any time we fall by the wayside.  So, we give up.

Diabetes resolutions are no different. Promising to start being a ‘good diabetic’ (my eye is twitching right now!) and swearing to never have a BGL reading above 8mmol/l is noble in its vision, but downright impossible to attain. The first reading above 10mmol/l and the towel will be thrown. In.

Changes need to be small and goals achievable. Small rewards along the way acknowledging what we’ve accomplished help too.

My main diabetes goal for the start of the year is to get my basal rates sorted. I know that things aren’t great and haven’t been for some time. Despite having lost a significant amount of weight over twelve months ago, I haven’t done proper basal testing for a long time. I guesstimated some changes at the beginning of last year after some really nasty hypos and that kinda helped, but not so that I felt that things were really on the right track.  Despite knowing that reduced weight means reduced insulin requirements, I didn’t bother to work things out properly and faffed around by reducing bolus doses to compensate for too much basal insulin. Just ‘cause you know these things doesn’t necessarily mean you fix them. Apparently.

So, I’ll be starting with my morning basals and taking it from there. It’s frustrating and I really would prefer to be doing anything else, but I know that when my basal rates are tight, everything else diabetes-wise is that little bit easier.

Outside my diabetes life, I’ve decided that this year my goals include things that stretch me and push me out of my comfort zone. Last year, we visited Marrakech, which was so unlike anywhere we’d ever travelled previously. It was great. I loved it! I loved being in a country where each day I experienced something new and I was surprised around each corner. As much as I enjoy going to places where I know how things operate, it was so much fun working out a new place.

GeorgeHarrisonBanjoUkulele_posterz_bgbkg.244133714_std

So with the desire of searching for something new to keep me busy – something that was a bit of a stretch – I found myself uttering the words ‘Yes, I think I would like a banjo ukulele’ while I was wandering around a music store in inner-Melbourne last week. It’s been years since I played any music, and rather than pick up my flute and start playing that again, I’m going to start something new. Why not?

The goal isn’t to be a virtuoso, it isn’t to play gigs. Hell, it isn’t even to be any good at it. The goal is to do something new and something fun.

New starts excite me. I love the possibilities of what lies ahead. The beginning of a new year has me filled with optimism. I don’t do resolutions, but I do like the ‘clean sheets’ feel of the start of January. And with a year behind me that was probably one of the most difficult I’ve ever had to endure, saying goodbye to 2013 has been more than welcome.

But as much as I love the new, the old makes me feel secure.

Old habits die hard, and for me that’s never more apparent than when it comes to diabetes. As much as I like to be up-to-date with the latest gadgets and know what’s at the cutting edge of research, I can still be relied upon to do many things the same; day in, day out. There is comfort in knowing that when checking my BGLs, my middle and ring fingers will always draw blood, so they are the two that I always use. There are minimal surprises when I insert a new cannula into the only fleshy part of my middle region – around the sides. Insulin delivers smoothly and evenly and after four or five days, I know that it’s time to change the line before my BGLs start to rise. Hypo treatments that work are the ones I rely on and mixing it up only reminds me why I’ve used The Natural Confectionary Company snakes for the last 10 years. Call it a rut if you want, but I prefer to look at it as ‘if it ain’t broke, don’t fix it’.

It only becomes a problem when something I’m doing – and continuing to do – isn’t working and I don’t do anything about it. Not learning from mistakes is denial in its worst form. There have been times when I’ve known what I’m doing isn’t working and instead of dealing with it and making changes, I make excuses for it. ‘Oh, inserting cannulas into my leg isn’t providing as stable insulin delivery as usual, but it’s only because I’m sitting at my desk for work. When I start walking around more it will be fine.’ (Note to self: your job means sitting at your desk. You don’t like walking around. Stop putting the cannula in your leg!) Or ‘Yep – I’ve been hypoing constantly at 3am for a week now. But I don’t need to change my basal rates. Oh, no. I’ll just keep seeing if it fixes itself’. (Note to self: it won’t. Change your basal rates, you twit.)

Einstein said that the definition of insanity is ‘doing the same thing over and over again and expecting different results’. I say denial is often easier than trying to work out what’s going wrong and making changes.

So even though I say I don’t do resolutions, I am making one promise to myself for this year. Denial is out. If something isn’t working or if something is wrong, I’ll address it. Making the same mistakes over and over and over again doesn’t serve me well in any way. I’ve been too complacent in accepting things simply because I’ve felt I haven’t the energy to tackle them head on. But no more.

As I stood watching the fireworks explode over the city, signalling the start of two thousand and fourteen, I exhaled the year that just closed and said a quiet good bye. But better than that, I felt the strength in me that had built over the year. Because that’s the thing. Learning from the tough times means that hopefully the same mistakes won’t  be made again. I know that if faced with any trials and tribulations like the ones that came into my life last year, I won’t be dealing with them the same way. I’m ready for them.

First day of the New Year and I’m full of hope and happiness. And complete and utter frustration. If I cover my right eye, the possibility of excellent vision, gorgeous colours and clear lines is there. I can see it and I can reach for it. When I cover my left eye, I see a murky mess where colours are dull, lines are blurred and there is no such thing as white – just yellowing gloom. And when I look out of both eyes I see a mismatch. With a headache. This is the reality of life between cataract surgeries.

1495543_10152084423870789_1327039898_n

One of the gorgeous women I work with bedazzled me up an eye patch!

The good news is that the first surgery was a success. To say that I was stressed is an understatement. I was anxious and nervous and prepared to walk away and simply put up with my eyes as they were. Even as I was waiting for the anaesthetist to administer drugs, thoughts of jumping off the table and running away, surgical gown open at the back and flying in the wind, into the car of my waiting chauffeur played in my mind.

But in less than 30 minutes of being knocked out (yep – I got my general anaesthetic!), I was awake with one eye patched. There was no pain, just grogginess from the anaesthetic. And the next morning, I sat in my ophthalmologist’s room as he gently removed the patch, gingerly cleaned out the eye and then….then I could see. The sharpness of my vision startled me. Outside, the blue of the sky and the green of the trees had me gasping. Everything was in focus. At least, it was out of the ‘good eye’. I was equally startled by how horrendous the vision is in my right eye.

The downside of cataract surgery is that the synthetic lens that has replaced my own milky lens can’t focus. So while my distance vision is great, I need glasses to read now. It’s a new world of trying to remember where I left my glasses (usually on top of my head) and every time I so much as want to check the time on my phone, I need to put them on. But I’m getting used to this and once the other cataract is removed, I’ll be able to spend hours upon hours finding the perfect pair of glasses. You can hear the disappointment in my words at the thought of adding further accessory shopping to my list.

I love a new beginning as much as the next gal and I’ve done a lot of things lately so that things really do feel new and full of possiblities. But until I get the second cataract removed I feel a little in limbo. In the meantime, it’s reading in very limited stints, napping in the afternoons and doing everything possible to deal with the ‘mismatch’ headache. And counting down until the next eye gets done!

Happy New Year folks.

photo-2

Reading glasses.

 

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