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I couldn’t be more excited to receive this in the mail today:
And I couldn’t be more proud of the wonderful Kerri Sparling who I am lucky enough to call my friend.
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 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.
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.
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.
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.
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.
Reading glasses.
I have one sister. She is younger than me and much, much smarter. She also is able to wear yellow shoes and look elegant and stylish – something that I am yet to manage without looking like Donald Duck.
Actually, her style is something that is enviable. Earlier this year, she moved back into her newly renovated home. This may sound unremarkable, but the way she managed to pull together everything in a timely and on budget way is testament to her super organisation skills. Now, she has a home that is perfect for her in every way because she’s considered how all aspects of its design need to work with her. It’s light, bright and airy and a perfect showcase for the beautiful things she’s collected in her travel to over 48 countries. Everything has a place and every bit of space has been used perfectly.
I guess that now she’s moved in she’ll never be leaving!
That’s part of the appeal of doing something exactly the way you want. She designed the extension and renovation to work with her life. Her house and garden are low maintenance and easy to live in. There are open spaces and a kitchen with wide benches for the meals she makes for friends and families (and birthday cakes she makes for her ridiculously fortunate niece!). Everything works because she was able to plan it from the beginning, keep an eye on it throughout the build and then put the finishing touches on it herself once she moved in. When things didn’t go to plan or there was a problem, she worked through it with her builder and changed the plans to suit. But she never lost sight of what it was that she wanted and what she needed. It has her name stamped all over it!
I’m really trying that philosophy with my diabetes at the moment. I’ve set some goals that are right for me and, I believe, achievable. I’m keeping an eye on things and using the results I’m getting to make plans and make changes. When I’m thrown a curve ball (AKA three overnight hypos in a row) I make changes – but I keep the goals I’m working towards at the back of my mind. I’m doing things the way that work for me, fit in with my at-the-moment-crazy life and don’t get stressed if I need to make a slight change to things.
So far, things are working okay (albeit the three nights in a row hypos). I’m relaxed because I’m looking big picture, not at tiny results. A lousy day of numbers is but a lousy day – not a long term indication. Stopping, regrouping and taking stock regularly help.
So while the end game for me is not a beautiful house it is diabetes managed in a way that makes it easy for me to breathe. And that’s a good thing.
Sisters
World Diabetes Day is drawing to a close across the world. The clock is about to turn over into 15 November but it seems that blue lights will burn brightly for some time to come.
Melbourne’s iconic GPO gets its blue on for WDD13
My WDD started on its eve with an important event for diabetes research. The 2014 Diabetes Australia Research Trust awards presentation gave 22 Victorian researches grants. Many people aren’t aware of the commitment Diabetes Australia makes to research each and every year. This year alone over $3million dollars was given, including the $150,000 Type 1 Millennium Award which is specifically for research into type 1 diabetes.
After the awards, I found myself in the Melbourne drizzle wandering down to the GPO. As I approached, I saw it lit in blue. It looked splendid! Staff from Diabetes Australia – Vic and some of the Diabetes Australia Young Leaders donned blue ponchos and held all manner of lit-up blue things (I got a wand!! I’m just like Hermione!!) and stood in the glow of the GPO. This is part of the IDF’s global light up a monument campaign. You can read here for other iconic buildings and monuments that have been washed with blue. It was some fun for an important awareness-raising activity. And now, I have a blue wand!
On WDD proper, I found myself up just after 4am and on a 6am flight to Sydney to answer some questions about diabetes on a new breakfast television show. Studio 10 ended its morning with a discussion about World Diabetes Day and I was asked about life with type 1 diabetes. It was an opportunity to bust some myths which I’m up for pretty much any time! You can see the interview here.
What I wish I knew…..
Next up was the launch of a new book called What I wish I knew about type 2 diabetes which is a collection of stories of people living with diabetes (all types – not just type 2 despite its title) and health professionals working with PWD. This gorgeous little book by Marty Wilson tells wonderful tales of people who have lived with diabetes for many years. It also includes one of my previous blogs. Look out for the book – it’s definitely worth a read.
World Diabetes Day is an important day for the diabetes community. It is our day to talk about diabetes and have others thinking and talking about it too. Whether it be international organisations like the IDF who yesterday released new global diabetes statistics in their Diabetes Atlas, or local and national diabetes organisations like Diabetes Tasmania who attended Government House for an event with some of their Young Leaders, or community events and activities like the global 24-hour diabetes Twitter chat, it’s a day where diabetes is front and centre. My Facebook and Twitter streams were full of blue and family and friends commented on my posts and even posted on their own pages about diabetes. (A shout-out to my sister who got TOTALLY in the WDD-spirit by wearing blue circle earrings and plastering her Facebook wall with WDD messages. Thanks, Toots!) I even pinned blue circles onto our real estate agents’ very suave suits as they came to do an open for inspection for our house sale last night. Everywhere I looked I saw blue.
Diabetes may not be understood by everyone. But yesterday was a day where we could talk about it and hopefully give people a little more understanding about what life with diabetes means.
Of course, it doesn’t end here. The WDC is in just two weeks. Let’s keep the conversation going. And don’t forget the OzDOC get together on 3 December as part of WDC!
This is the story of Hypo Boy who, when not being a superhero, is the fabulous Spike Beecroft. I’ve known Spike for quite some time, and his incredibly amusing anecdotes about his life with diabetes never fail to have me in fits of laughter. This is a classic Hypo Boy tale that has been shared many times before. Recently, it appeared again on my Facebook page, and I asked Spike to guest blog and write about it here so you could all enjoy. Take it away, Hypo Boy…
People with diabetes are super human in lots of ways. We do the little bit extra that others just can’t do. Sure it’s not flying or shooting laser beams but it is a little extraordinary, and when you’re in hypo zone, that ‘super-ness’ can overwhelm your brain and give you powers you didn’t know you had; in fact it can give you powers you don’t actually have but you become convinced they’re there. My inner and very confused superhero is Hypo-Boy.
There are a number of things we all have to do in life that are stressful. Some we can manage to avoid with very little effort, like speaking in public or getting married. One stressful occasion that is difficult to avoid is moving house. Even if you opt to stay with your parents for your life at some point they will move to avoid you.
Stress does strange things to PWD and stressful situations confuse your finely-tuned spider sense of what’s going on with your finely-tuned and gym-trained body. If you’re hypo unaware and under massive stress and your gym routine consists of only riding a bike (you’ve seen those guys – they’re all legs and bits of string from their shoulders instead of arms) then moving house is a disaster waiting to happen.
The fateful day had arrived and I’d started the long and very strenuous task of packing up the house into boxes, loading said boxes into the truck and then transporting them to their next destination. Being an engineer and a logical person with type 1, I decided to start working from the back of the house and move forward. It was a clear and concise plan that involved the placement of items in the truck with regard given to weight, size, ease of load and unload. It was a perfect plan.
Then I started moving stuff.
It was going well – I was ahead of my predetermined plan, boxes where moving, I had a rhythm, I didn’t have time to test, I stumbled occasionally due to the weight/size of the stuff I was moving, the sweat on my brow was what they talked about in VB ads. I was THE MAN.
Hypo Boy knows one thing and he knows it well – Hypo boy knows when he’s low and everyone else are retards of the highest order. In retrospect the stumbling was due to being low and not being super co-ordinated; the sweat was from being low. But I was on schedule and I do like the odd VB.
The last item to be moved from the room was a big white couch. It’s a three person couch – one of those things that’s not super heavy, but is awkward to manoeuvre. It’s really a two-person job, but Hypo Boy can convince you (and himself) of many things including that he is THE MAN and that physics and ergonomics are fantasies. And also that the fuzzy vision and misjudging the size of items is just from the stinging of man-sweat.
Hypo Boy decided that the most efficient way to manoeuvre the couch out of the room was to tip it vertically and slide it on one end through the doorway. Lifting couch vertically and sliding couch on the fabric side across floorboards couldn’t be easier. Hypo Boy’s brain knows its stuff. This was going to work. Perfectly! Or until it’s halfway through the door and perfectly jammed in the door jamb.
Whilst a couch on its side does slide nicely across a polished timber floor, a vertically arranged couch with its back facing you, jammed in a doorframe provides almost nothing to grip on and use to push either forwards or to pull back on to reverse the operation.
After a few tries at various methods to move the couch, the sudden and very real feeling of weakness that comes from realising that you’re low hit. , And I realised I was not just low, but orange-box-NOW kind of low. Hypo boy had deserted me; taking with him his strength and mental clarity and leaving me stuck in a room with no hope of escape because I’d successfully stuck a couch in the only exit.
A real feeling of fear as I desperately tried to un-jam the couch and get to the hypo fix. But when you’re really low the ability to open a Mars Bar can escape you let alone trying to move a couch! And logically working out how to move the thing is way beyond what I capable off. It was looking grim. I could see the news headlines –MAN FOUND DEAD TRAPPED IN OWN ROOM. POLICE BAFFLED.
Fortunately for all of Hypo Boy’s fans an alternative plan hatched. Maybe – just maybe – Hypo Boy’s last vestiges of power would help. Exit the room via the window! And so I did. Then the next challenge: the locked back door. Again Hypo Boy’s brilliance came through: crawl through the dog door. Hypo boy looks good in lycra, but could afford to lose a few kilos. Doggie door needed some minor attention after its use by an animal several sizes larger than the designers ever considered.
Finally the kitchen! Hypo boy could save himself!! Why Hypo Boy had packed the jelly beans first was a question for later. There were slightly stale and not so crisp Ginger nut biscuits that would have to do! Well done Hypo Boy. Well done.
Later forensic investigation would reveal that:
a) the couch was pretty well jammed in
b) trying to grab the couch on the other corner would have made the couch twist nicely and popped it out of the door allowing the move to continue, Hypo Boy is obviously VERY, VERY focused on the right side of the world.
Thank you Spike for guest posting today. Please come back again and share more of your stories!
Diabetogenic 