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‘Do you want basal with that pizza?’ We were in Little Italy at a restaurant we’d been sent to by the owner of a local guitar store.
I stared blankly at the waiter. What was he asking me? Of course I’ll need basal with that pizza – it’s freaking pizza. And I’ll need a shed-load of dual wave bolus too. Why were we even having this conversation?
‘Basil’ my husband whispered to me.
‘Oh, BASIL! Basil! Yes. Yes please.’
In Barnes and Noble the other day, loitering in the kids’ section with the kidlet, I saw this book:
The other night, wandering around a holiday market, we warmed our freezing fingers in a chocolate shop and I saw these – the perfect antidote to a syringe of insulin!
As we made our way to a guitar shop in the East Village, we walked by this diner – surely the perfect place to treat a low.
Just a couple of blocks from our apartment is this sculpture. And even though I know it’s not about diabetes, it is to me.
And every time I look up, I see skyscrapers that are shiny and edgy and beautiful. And they remind me of sharp, pointy needles.
Diabetes – if you look, you can find it everywhere…
I was more than a little honoured to see that three Diabetogenic posts from last year had been voted Best of the Betes Blogs. Thanks to Sara from Moments of Wonderful for running this – and acknowledging diabetes blogs and bloggers. And thanks to those who voted for me.
In New York City, the streets are full of people. With only hours until the ball drops, there are people everywhere and more police than I have ever seen trying to control the flow of people and traffic. We just fought the crowds to get back to our apartment where we plan to spend a couple of hours before braving the cold and heading out again to catch some fireworks and see in 2015.
Never one for resolutions, I don’t have a list of things I plan to achieve. As tough as 2014 was, I’m not swearing to leave it behind with promises of new starts. I’ve tried that the last couple of years only to find more difficult times ahead. I have learnt that a clock ticking over to 1 January does not promise anything new. It really doesn’t.
But that doesn’t mean I am not hopeful.
Today, as we spent a most wonderful afternoon in what could be the most beautiful place in NYC, I saw this card:
And then I realised that as much as I don’t care for resolutions, I do care for these things. And it is with pleasure, and a hopeful heart, that I can say that right here, right now, I have all these things. I am healthy – despite diabetes; and I am happy and at peace with who I am.
And in all honesty, that is a really good way to see in the New Year.
When you read about travelling and diabetes, you are told about the practicalities:
Pack twice as many diabetes supplies as you think you’ll need.
Carry a letter from your healthcare professional explaining you have diabetes to give to security personnel.
Don’t forget hypo food.
All of this is great advice and definitely things to consider when packing and planning a trip.
The theory of travelling and diabetes is different for every person and every trip. And every trip I learn something new – and not everything I learn is about diabetes!
Hotel cocktail hours are a great way to wind down from a busy day at a conference, read and respond to work emails and write a blog post of the day’s activities. Hotel cocktails are the work of the devil and their contents cannot be measured ensuring effed up BGLs for the remainder of the evening.
Don’t ever assume that people will know what an insulin pump is. We went through seven security checkpoints (Melbourne, Dubai (x2), Vienna, London (x2), and Amsterdam) and at all bar one I set off alarms and was given a pat down. Each time I asked the security attendant if they had seen an insulin pump before and apart from in Melbourne, the answer was no. (For the record, it was Amsterdam airport that didn’t cause any problems. Perhaps not surprisingly….?)
Don’t try to explain an insulin pump to said security guards who have never before seen such a device. Case in point:
DUBAI
Me: I am wearing a medical device here. It is shaped like a box. I can show it to you.
Security attendant (SA): Yes please.
Me: Here it is. It’s an insulin pump.
SA: Is it a pace-maker?
Me: No. An insulin pump. For diabetes.
SA: Oh – a pace maker. For your heart?
Me: No. It gives me insulin…medicine. For diabetes. Diabetes?
SA: Ah – you have a heart problem.
Me: …..Um. Okay. Yes. Yes.
SA: Thank you. All good. You can go.
The Natural Confectionary Company jelly snakes taste different in London to in Australia. No idea why; they just do.
Jet lag is cruel, evil and soul destroying. I say that as I write this not knowing what day it is; what country I am in, or how to spell my name.
Riding a bike around Amsterdam will cause hypos. Most people who have half a brain and have lived with diabetes for 16 years would know this and therefore make appropriate considerations to the quantity of insulin they give themselves. I am not one of those people.
On yer bike.
Walking around cities will cause hypos. See above.
Eating Sacher torte for breakfast may not be nutritionally ideal, but it’s fun and delicious and a lovely way to start the day. And if you have it with whipped cream, you’re getting a serve of dairy. #PracticallyHealthFood #OkayThatWasALie
Being prepared for any contingency is a really good and smart and important idea. But it is a bloody pain to have to carry a whole suitcase (of carry-on luggage) with all the spares only to bring most of them home.
It’s possible that while I will tell everyone that seeing Klimt’s ‘The Kiss’, going to the Rijksmuseum, visiting The Anne Frank House and going to see ‘L’elisir D’amore’ at the Vienna Opera House were all amazing and incredibly culturally enriching, the thing that got me most excited was going on the Harry Potter Tour at Warner Bros. Studio and riding a broomstick.
Travelling is fun; attending conferences about diabetes is eye opening; visiting new places is a privilege; catching up with DOC friends in real life is magical. But. Missing our little girl hurts like nothing else, and being greeted by said little girl late at night as the cab pulled up in front of our house is the sweetest thing ever. Coming home? Nothing ever beats that. Not even riding a broomstick.
Community Service Announcement for those in Australia affected by daylight saving which kicked in yesterday making it even harder for me to have any clue what freaking day it is.
You are welcome!
There are times – frequently – that I really don’t want to have to speak or think about diabetes. But it comes up. Often in the most unlikely places.
Other times, I hope it won’t, but it does.
Such as going through security at airports. As we left Vienna to travel to London, I was stopped after I set off alarms (again). I had already taken off my boots, my necklaces and my bangles, but I was still making the alarm sound.
I was taken to a curtained-off room for a search and when I produced my pump was shocked to hear the lovely woman from security tell me she’d never seen one before. ‘Never?’ I asked. ‘Never,’ she confirmed.
Same thing happened as we headed Amsterdam. More alarms, more searches, more pat downs and a special little swab for my pump.
So far, it was three for three – Dubai, Vienna and now London.
When we landed in the UK and got to the end of the customs queue, we had a most friendly customs agent chat to us about the reason for our stay. ‘Well, I’m doing some work. And I’ve come from a conference in Vienna.’ ‘What do you do?’ He asked. ‘I work for a diabetes organisation in Australia and I’ll be spending some time with diabetes people here. The conference was a diabetes conference.’ And he was off, sharing the he used to work for a health insurance fund and diabetes is a really, really big problem and why don’t people look after themselves and even when you tell people what could happen to them if they don’t start looking after themselves they ignore you and then they get complications and then……’
And then I decided to not listen anymore, smiled blankly and waited for a new stamp to appear in my passport. Because UK Passport Control is not where I look to have a discussion about diabetes.
A visit to the chemist to buy cough mixture came with the question, ‘Do you have diabetes.’ I wish I could lie and just say no, because when I said yes, there was then a big discussion about the sugar free mixture and having to ask the pharmacist ‘can diabetics take this?’
And then there are the times when it is just a pain in the bum and whilst trying to enjoy a stroll, we have to stop so I can replenish my glucose stores.
Hypo-treating on the streets of London.
A couple of weeks ago in Vienna, I was surrounded by members of the diabetes community – many of whom I am lucky to call my friends. We may live with this condition, but it really isn’t what we talk about when we sit together after the official stuff is over. No, we talk about anything but diabetes for most of the time. It’s actually refreshing!
Because so often, it seems that even when I don’t want to have to think about diabetes, I do.
I sat in the Qantas Club Lounge fighting back tears as the kiddo sent me text messages saying she would miss me. There were tears when I left, but my mum assured me that she was okay within about five minutes. (There’s a double-edged sword for you – happy that she is okay, but, dammit, couldn’t she be upset a little longer?)
I was hoping to drown the sadness of three weeks without my little girl with the excessive food and booze on offer in the lounge, but a stupid BGL of 17.3mmol/l (hello stress) saw me nibble on some nuts, drink half a glass of sparkling wine and avoid the dessert table. Missed opportunity.
By the time I boarded, my CGM was showing a much nicer number and I settled in for the long flight. As usual, I was asleep before we took off and managed to get in five hours of sleep, waking only because my pump was vibrating. (At that point, I felt I needed to explain to the person next to me why the little box in my top was vibrating and what it was for and I have diabetes and it’s telling me that my blood sugar is above it’s high limit because I’m stressed when I’m in transit and I miss my nine year old daughter and I wonder when the wine cart will be around.)
I am not afraid of flying – never have been. But I loath being in transit. It stresses me out and that sends my BGLs soaring. I bolused a little and upped my basal rate a touch.
When food arrived, I took two mouthfuls of the chicken-rice-vegetable combination that seems to make up pretty much every airline meal and held on to the chocolate bar. My CGM graph was pretty stable for the remainder of the first leg.
At Dubai airport, I set of every alarm possible going through security and was escorted to a private room to be patted down by a female attendant.
‘I’m wearing two medical devices – one here (I patted my chest) and one here (this time, I patted my abdomen where my CGM is inserted). I can show you if you’d like.’
After playing diabetes show and tell, I collected my things and moved through the airport, finding somewhere to have a coffee and regroup before the final flight. (And avoid accidentally buying a Hermes bangle.)
A two hour lay-over and I boarded the plane for Vienna. Thirty minutes in and off went my alarm warning me that my BGL was dropping too fast. I treated the impending low and fell asleep for a couple of hours, waking for a meal (another two mouthfuls!) and rounded out the flight with a couple of movies.
Checking into the hotel, I realised it had been 26 hours in transit door to door.
Travelling with diabetes has it’s challenges. I never travel now without wearing CGM because I like being able to pull out my pump and see how I am tracking. I love that I can respond to arrows before the number becomes problematic. This is, of course, the beauty of CGM all the time, but being able to stop having to deal with a nasty hypo while cruising at 35,000 feet in a cramped space is convenient beyond belief. Equally, being warned about the ‘about-to-happen-in-transit-stress-highs’ before they become horrid, socks on teeth, needing to wee every five minutes hypers is fabulous – for me and the person I’d be climbing over to get to the loo!
So, now, I’m in Vienna. The first strudel and schnitzel have been consumed. I’m jet lagged beyond belief. But my BGLs are over their in-transit-stress. Everything is how it should be and I’m ready for EASD!
On Saturday, I head to Vienna for this year’s EASD conference. Yesterday, my aunt asked me if I was packed and ready to go. ‘Ha!’ I laughed. ‘Of course not! I’ll do that an hour before I need to leave for the airport. I don’t even know where we have a suitcase at home.’ I am not an organised traveller by any stretch of the imagination, and generally have the philosophy that if I forget something, I’ll buy it when I get there. (Actually, I secretly hope I’ve forgotten things like shoes and bags so I NEED to buy them when I get there….)
This ad hoc attitude generally works. Except, of course, when it comes to all the diabetes things.
I feel like I’ve got everything under control. Until I list all the little things I need to do, need to buy, need to find, need to organise. It’s nothing major; nothing big. No; it’s the little things. And they add up!
I need:
- Insulin…(do I even have a current prescription? Call the pharmacy and check);
- pump lines and reservoirs;
- BGL strips;
- to organise my loan pump;
- to order sensors;
- to check my travel insurance;
- to locate a spare meter. Surely I can find a working one (without a flat battery) in the myriad spares at home or in my desk;
- to find my letter from my endo;
- to locate (and wear!) my medic-alert bracelet;
- to buy hypo supplies for the plane;
- my Frio pack…(just realised I’ve not seen it since we moved at the end of last year);
- spare batteries for my pump…(especially urgent after getting a battery alarm this morning);
- syringes;
- back-up long-acting insulin…(do I have any in-date long-acting insulin in the fridge?)
- to get a manicure and pedicure. (Okay, not strictly diabetes related, but I’ll be using this as my check list. If it’s on here, it has to be done!)
The clothes and shoes and everything else that those with functioning beta cells need to pack can indeed wait for an hour before the taxi arrives. But all the diabetes things need to be organised and sorted and planned. Five days; that’s heaps of time. And I just booked in my manicure for Friday. Organised!
‘Which five albums would you want with you on a desert island?’
Putting aside issues of how to play the albums (I’ve not watched enough Gilligan’s Island to work out how to fashion a coconut, palm frond and pile of sand into a sustainable electricity source), it’s fun (and hard!) to think of the five albums I’d want to listen to repeatedly until rescued by Captain Jack Sparrow.
It’s just as fun to decide the five movies or five books I’d choose. (At least with the books, electricity is not needed.)
But what about the five diabetes things I’d want with me if I found myself stranded?
Disaster management when it comes to diabetes is something that I have stored in the to-do list at the back of my mind along with sorting out my Will and cleaning out the third drawer in the kitchen. I know I should do them, but really, really, really don’t want to. I’ll get around to it eventually.
I also think that given my personal situation – inner-city living, five minutes from the nearest tertiary hospital, know heaps of people I can call on if all my diabetes supplies get eaten by a wild animal etc. etc. it’s not likely that I am going to need to set my disaster plan in action any time soon. But never say never, right?
The only time I really think about it is when I am travelling and there is a (tiny) chance I could lose all diabetes supplies on me and be somewhat stranded without the support and emergency back-up I’m used to. When I travel, I over-pack for any situation. I take two spare pumps, enough diabetes supplies to last at least twice the time I’ll be away and make sure that everything is packed in a bag that is never out of my sight.
But…what if?
Well, for the sake of the diabetes desert island play list game, I think it would be the following:
Insulin – obviously. Lots of it. And some way to deliver it. While I am very attached to my pump (literally as well as figuratively), for the sake of this exercise, I’m going to say that I’ll use syringes to deliver said insulin. That way, no need to worry about batteries, pump failures, infusion sets, reservoirs etc. etc. I’d also want a BGL meter with a very long-life battery and lots of strips. Of course I’d need lancets. Ha-ha-ha-ha. Just kidding. I’m assuming it’s going to be hot on the desert island, and warm weather always results in lows, so I’ll need enough jelly beans to see me through until I find another source of glucose (hoping there will be a plantation of delicious berries somewhere). And finally, a Nutella tree. Just because.
Whilst I doubt (hope?) I’ll never be stranded on a desert island, this exercise reminds me once again that diabetes adds that extra layer to thinking about how to manage different circumstances. But I think my list is sorted. I am now going to spend some time watching Gilligan’s Island to really prepare myself.
Friday tunes. This would definitely be on my playlist. Because even if stuck on a desert island, I’d still want to listen to Tom Waits.
There is a wonderful website I love called ‘Humans of New York’. It showcases the work of Brandan, a NYC-based photographer who tells the stories of people on the streets of New York and accompanies their words with gorgeous photos. I love it for a number of reasons. The stories are all beautiful and run the gamut from gloriously joyful to tragic and tear-inducing. Also – New York: what’s not to adore! There are ‘Humans of….’ blogs and projects from other cities too now – Melbourne has our own.
There’s an intimacy and openness to Brandon’s subjects as they share what’s on their mind at the moment he takes the photo, or tales of things that have happened in their lives.
I’ve always loved hearing people’s stories. I ask a lot of questions of people in an endeavour to get to know something that isn’t at the surface. Finding out what explains people – what makes them tick, get excited, saddens them – is a privilege and a joy.
Reading blogs gives the same insight and it also connects me to the writers. Diabetes blogs by others help me understand my own diabetes story better. And I blog in the hope that my stories do the same for others.
So – I’m starting something new. Every now and then, I am going to ask one of my friends with diabetes to send me a photo and a sentence or two about their diabetes week or something about their life with diabetes. I haven’t got a catchy name for this yet, but suggestions are greatly appreciated.
If you’d like to participate, get in touch using the contact me button at the top of my blog.
So – for today, I’m asking Eliza to kick it off this new project.
Where was your last overseas holiday?
My last trip was to Japan. It was unbelievable. Having diabetes didn’t stop me tasting every food I could find or having a go at every slope on the mountain. The most tiring part was digging my skis up out of hip-deep powder every time I fell over.
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.
Today 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)
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.
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