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It’s been one of those days – a nothing day. The roller-coaster BGLs started overnight and haven’t stopped. Nausea hit around 11am only to be replaced with numb lips at 3.30pm just in time for an afternoon hypo.
I hate diabetes on days like today. It makes doing just the most simple, boring tasks difficult and right now after my BGLs have lurched between 2.8 and 22.4 I feel like my head is filled with molasses and my limbs are heavy with lead. I can’t see straight and I can’t think straight.
This is when I want diabetes to bugger off. If I could pack its bag and ship it to a farm, I would. It’s days like today that the silver lining is really hard to find and I am unable to think of anything remotely useful or decent to come out of having been diagnosed with diabetes. It’s days like today that I wish I was ignorant of diabetes and had never heard of it.
This isn’t burnout. This isn’t diabetes distress. I’m generally doing fine with my diabetes at the moment – regular checks, counting carbs, remembering to bolus, paying attention to CGM alarms etc. This isn’t where I do the I’m-so-over-it-I-can’t-deal-with-this-anymore-so-I’ll-pretend-I-don’t-have-diabetes dance which is frequently followed by the head-in-the-sand tango. No, this is just a nothing day where I want to pick up my diabetes, scrunch it in a ball and throw it a long, long, long way away.
It’s for these days that the term ‘invisible illness’ was coined. I’m at work, doing all the things that are expected on a Tuesday. No one is the wiser. Except me. The days that make me feel alone and tired because I can’t hold something up and say ‘look at this – it’s why I feel crap’. These are the days – the nothing days – that it feels like diabetes wins.
Myths to do with diabetes frustrate me as much as the next person. I want people to get it right when they are talking about diabetes; I want the media to report diabetes correctly and I want facts presented in a clear, non-threatening, easy-to-understand way. Of course, this is relevant to all types of diabetes.
What annoys me is people who are furious about one myth, but more than happy to perpetuate others.
Some people in the type 1 diabetes community are outraged if they are lumped in with people with type 2 diabetes. Campaigns and petitions have been developed to change the name of type 1 diabetes to avoid confusion between the two conditions. The thought of being thrown in with people who ‘brought this on themselves’ (that, by the way, would be another myth and completely unhelpful) results in Facebook posts, Tweets and blog after blog after blog.
Me – I couldn’t really care less. I have type 1 diabetes, I know it and I’m happy to educate anyone who has no idea about autoimmune diabetes. I’m also too tired and just plain over this discussion, so I try to avoid it. I do acknowledge that if it wasn’t for the significant number of people with type 2 diabetes, I’m pretty sure that the 120,000 of us with type 1 in Australia would get lost when it comes to funding and media attention.
But, for some it is a real issue and they get angry and do anything they can to make sure that they are seen as different from the majority of people with diabetes in Australia – the type 2 diabetes community. And that’s fine. If that’s what your thing to get angry about is, knock yourself out. (My thing changes every day. Today it was that I didn’t get a cup of coffee in me until after 11.30am.)
There are many other myths about diabetes and they annoy me more. Here are just a selection that I’ve come across in the last couple of days:
- If you use an insulin pump you have diabetes ‘really bad’ (wrong and rotten grammar!)
- If you have diabetes, you can’t eat sugar
- If you weren’t so lazy you wouldn’t have type 2 diabetes (genes anyone)
- Diabetes isn’t really serious
- Cinnamon cures diabetes (okay – it was me banging on about that, but I was just trying to justify in my own head eating an apple cinnamon muffin.)
- You can catch diabetes.
- You grow out of type 1 diabetes (blood. starts. boiling.)
I immensely admire and respect the work done by the Juvenile Diabetes Research Foundation, but using the term ‘juvenile diabetes’ just fuels the myth that this is a condition that only affects kids. Focusing on children who have diabetes is incredibly important, but those kids are going to grow up and hopefully live long, healthy, happy lives. Where is the awareness and focus on adults with diabetes? The reason the term juvenile diabetes isn’t used anymore is because it doesn’t accurately represent the broader type 1 diabetes population.
Of course I’m being somewhat self-serving. I was diagnosed as an adult and my experience of life with diabetes is through the eyes of someone who has lived with it since my mid-twenties. But during that time, I’ve needed information and services and programs that just weren’t there. Information about pregnancy, body image, parenthood, work life balance – things that are relevant to me at this stage of my life – was quite thin on the ground!
I completely agree and believe that there needs to be programs and activities developed specifically for kids with diabetes. Diabetes in day care and school settings is a critical issue to be addressed; camps for kids with diabetes are brilliant. But this is an ages and stages condition. Why is there not as much of a focus on other periods? Whilst some attention is being given to transition from adolescent to adult health care, what about for men and women with diabetes in their thirties and forties? Where is consideration of women going through menopause or for people at retirement age? Why is no organisation focusing on older adults with diabetes in aged care?
If people want to make sure that the world understands that type 1 diabetes is different to type 2 diabetes, then surely they also want to break down other myths about type 1 diabetes. This is not a condition that only affects children. Half of those diagnosed with type 1 are diagnosed as adults. The majority of people in Australia living with type 1 diabetes are adults.
Break down the myths. Educate people about what type 1 is all about. Just don’t do it at the expense of all the facts.
Is there a myth about diabetes that annoys you?
Today, things got a bit fancy with a visit to Government House for the annual Kellion Victory Medal Award Ceremony. The Kellion Medal celebrates people who have lived with diabetes for 50 plus years with awards given at 50 years, 60 years, 70 years and even 75 years. This year in Victoria, twenty-one people received 50 year medals and an additional fourteen were given their 60 year award.
I have written before that this is my favourite day of my work year and it really is! I am so honoured and privileged to be able to sit in a room with this remarkable group of people and hear their stories of long, full lives despite diabetes.
When it comes to diabetes, I am a mere teenager. With only 15 years under the hood, my Kellion medal is a long way off. But I love this day so much because I leave feeling positive and hopeful and encouraged.
If you’re looking for inspiration, this is the place to come. Interspersed with tales of boiling glass syringes and sharpening needles are the attitudes and the approaches that have seen these people not only live, but live well with diabetes.
Here are just some of the things I heard today.
Marjorie (50 year recipient) has given herself over 50,000 injections in her lifetime.
Judy (50 year recipient) says ‘I don’t feel sorry for myself, but it makes me happier if I can say sometimes that it’s crap to have diabetes’.
Kevin (60 year recipient) says he’s ‘led a good normal life’ but is frustrated there is not yet a cure.
Plus some great tips such as the one from Guy who received his 60 year medal today. ‘Never give up your sense of humour!’
Garth (60 year recipient) believes that ‘Common sense and a positive attitude are invaluable tools. The best way to treat diabetes is to lead a normal life.’
And the fabulous Peg, who is a DA-Vic Board Member and has run a support group for people with diabetes for many years says, ‘Join a local support group so you can meet others with diabetes, to exchange ideas and experiences. Never let diabetes stop you from experiencing life!’
I also learnt that even though there has been amazing progress when it comes to diabetes management tools and technology, some things never change. At diagnosis 60 years ago, Kevin was told there would be a cure in 5 years’ time. That old chestnut seems to have been around for a long, long, long time!
A bit fancy? Maybe. But if anyone deserves a special morning tea and a bit of ceremony it is people who have lived with diabetes for so long. It is people like this who we should be celebrating and throwing ticker tape parades for (and I say this not only because in 35 years I’m expecting ticker tape!). We should be looking to these people and acknowledging that surviving diabetes for such a long period does deserve awards, tributes and accolades. I want to be just like them when I grow up!
On Saturday, we hosted our latest Type 1 in the City event which covered one of the almost-taboo topics of diabetes – complications. As a diabetes organisation, we seem to at times be scared of speaking about this issue and when we do it’s in hushed tones. Despite being one of the most requested topics on our event feedback forms, we’re reluctant to put it on our ever-growing calendar of events.
As a person living with diabetes, I don’t like talking complications. In a stupidly superstitious way, I feel that if I do I’ll make them come true. (Yep – me and logic. Best friends!) But after 15 years of living with diabetes, I am, for the first time, having to face complications head on. The cataracts that have been threatening to cause vision problems are now at the point where I can no longer ignore them. At my six-monthly ophthalmologist check-up last week, I decided it was time to bite the bullet and schedule the surgery to have them removed.
I’m not okay with this and it’s more than just being a complete and utter wuss when it comes to eye things. Although it’s likely that I was going to develop cataracts, my diabetes is probably the reason why they first appeared when I was 28 year old and that I will be having surgery for them at 40.
I believe that at Diabetes Australia – Vic (where I manage Community Programs) we have a responsibility to put discussions about diabetes-related complications on the table. We should be talking about them. As soon as a topic becomes taboo, there is shame and stigma associated with it. And that shouldn’t be the case. For many living with diabetes, complications are a reality. We should be providing not only information about how to reduce the risk of developing complications, but also information about continuing to live well if complications do eventuate. And we should be doing this in a safe way that doesn’t cause shame or feelings of failure.
Maybe we need to start to rethink the way we speak about complications. Time and time again we hear that if we ‘take care of ourselves’ we won’t get complications. But we know that is not the case. It suggests failure on our part if we do get complications. Sometimes people do their very best with what they have access to, and complications still happen. If we reframe the discussion and make sure we consider the role luck or genetics may play, will that mean that people are less inclined to ‘do the right things’ because they think the result is pre-determined? Or will people actually feel better knowing that, if they do develop complications, they feel confident they’ve done the best they can with the tools available to them and the capacity they have.
My dear friend who does live with some diabetes complications is my go-to person when I want to ask questions about living with such challenges. She has some really strong and valid views about how we should be discussing diabetes complications. She says, ‘Discussions about complications shouldn’t be used as a threat. We don’t need to be showing the horror stories, but we do need to have available real, factual information about complications for those who would like to find it.
‘Also we need to make people aware that complications are not the end of the world. There are lots of people walking around with complications, living their lives. I work with others with diabetes and I don’t want to be the constant, visual reminder of what ‘can happen’. But I hope that they see that even with complications life can go on.’
One of the things that my friend mentions is that at times she doesn’t feel connected to the diabetes blogs she reads.
‘Sometimes when I read blogs like yours I think that you are doing it easy. It seems like you are doing really well with it. I don’t mean that with any disrespect, but my experiences are really different to yours. I’ve never read any blogs about people with diabetes who have had the same experiences as me.’
So what do we need when we are talking to people who have complications?
‘We need peer support – whether in a group situation or one on one or on the phone or online. While having treatment for complications, I was not given any offer of support like this and I think perhaps it would have been good for me.’
I feel incredibly lucky to have this particular friend in my life. I know that she worries that hearing about her diabetes life may scare me, it does the exact opposite. I know diabetes complications may occur – they were shown to me in all their gory detail the very day I was told I had type 1 diabetes and I was terrified. But speaking to her, watching her live a rich, full life (despite being a Collingwood supporter) doesn’t terrify me. It reassures me. It helps me understand that if complications are part of my diabetes future, they don’t signal the end. And that has given me hope. She’s pretty damn amazing!
I’ve been baking up a storm lately. It’s what I do when it’s cold outside. I love sweets but figure if I’m going to set my pump into overdrive, then whatever I am eating had better be bolus worthy!
I don’t ever use sweetener – it’s the real deal all the way for me! I’ve worked out that in most cases, the quantity of sugar listed in the ingredients list can be halved and the end product will still taste great. This is one of the fun things about baking and cooking in general. As you get more confident and learn how things work together, you can play with the ingredients to get the taste just as you like it!
If you feel like joining in, here are a few of my recent sweet treats and links to the recipes.
Does anything beat a homemade chocolate cake? This is one of the easiest, no-fail recipes you’ll find and it always results in a beautiful cake. Extra-special points for the fancy writing on top!
I always double the lemon quantity given in cake or slice recipes because I think it’s a crime if I don’t get a real hit of zesty-ness when I take that first bite! This recipe is brilliant and it’s no bake! The eight year-old kiddo made this pretty much on her own, so it’s a great one if you’re looking at getting kids cooking. I always feel like I’m getting my CWA on when I make this slice!
Bacon. Chocolate. Brownie. Were there ever three words that sounded better in a row? My baking hero, Nigella Lawson, came up with this recipe which includes a fudge-y brownie with salty, crispy bacon delights strewn throughout. The main problem with this recipe is stopping yourself from eating the candied bacon before you stir it through the brownie mix.
I have eaten more red velvet cupcakes than I care to admit. It’s my favourite cupcake flavour and I love tearing open the cake to reveal the seductive red colour. When we were in NYC over Winter, many afternoons were spent in Magnolia Bakery escaping the cold, enjoying a red velvet afternoon tea. Here’s their recipe. I’m warning you – they are addictive!
So, get baking! Then, put the kettle on and enjoy…Just don’t forget to bolus.
Feeling calm after having my senses blasted! A Sunday afternoon spent with family at a beachside pub, eating good food, listening to good music followed by a windswept walk on the beach.
Calm and at peace. A perfect Sunday.
The bar at Balthazar NYC
There is a restaurant in New York called Balthazar. It’s quite well-known and has been a favourite of ours when we’re in the Big Apple. Each trip has seen us eat a few meals there, pop by for a coffees and pastries, and visit with friends. We love it because the food is great, the staff are attentive and, with its dark timber-panelled and mirrored walls, it makes us feel like we’re in an old Parisian brasserie. And because there are playing cards on the ceiling.
Scattered across the ornate plaster work, are a dozen or so cards. Some are face up, others face down. We noticed them on our first visit there and tried to work out how they got there. The second time we ate there, we asked our waitress for the story behind the cards. ‘We had a party here quite a few years ago and a magician did a trick. And they stuck to the ceiling,’ she told us. Now we knew how they got there, but we weren’t too sure how they stayed there. We knew the result, just not the secret to their sticking power.
There are days that diabetes just works. Numbers stay in target, boluses give exactly the right amount of insulin for consumed carbs and no alarms squeal warning of falling or rising BGLs. Most times, I can’t work out why that happens; it just does. And I love it!
I’ve decided that on those days, I don’t try to analyse it. I sit back and watch the pretty flat line on my CGM and smile at yet another BGL check beginning with the number 6. I just accept the fact that I feel good and energetic and that coping with diabetes seems easy for a day or so.
The longer I’ve lived with diabetes the more I’ve come to realise that there are times that what we put in may not necessarily correlate with the results we’re getting. Sometimes, I need to throw my hands in the air and accept the day has gone to diabetes. Other days, I claim victory for doing nothing special. It’s the nature of the beast. Coming to accept that has been quite refreshing. Accept the result but know that sometimes I just can’t work out why.
This last weekend, the family went to a little French café in Fitzroy. We were enjoying our meals in the timber-lined room, with shelves filled with French wine and Champagne. All of a sudden, Aaron pointed to the ceiling. ‘Look!’ he said. There on the ceiling was a solitary playing card. We looked at each other in surprise and as soon as our waitress walked by asked her about it. ‘We had a party here a while ago’, she began. ‘And a magician did a trick. It’s been there for years.’ I knew that would be the answer she gave, but it still didn’t explain the magic. Sometimes, the method doesn’t matter. But the result is delightful.
Do you know the secret for getting playing cards to stick to the ceiling? I’m kinda torn between wanting to know and keeping the secret alive…..
Grief is an emotion that is, at times, quite toxic. It is all consuming and can be irrational. I’ve written before about grieving for my pre-diabetes life and how once given permission to do so, I was able to put in perspective where diabetes belongs in my make-up.
But the grief I have been experiencing for the last month has been like nothing I have ever known. It has moved in, made itself at home and is now ordering me around and making me angry.
It may come as a surprise, but I am actually quite pragmatic about the miscarriage. It happens. I knew the stats. At our first ‘Oh-my-god-we’re-pregnant’ appointment with the obstetrician, he calmly, but firmly, told us the stats. Thirty per cent chance of miscarriage at my age. I took it in, smiled weakly and added ‘plus, I’m not good at being pregnant….’ and let my voice trail off.
I refused to get too hopeful and every visit to the bathroom for the next few weeks, I expected to see the tell-tale signs of the pregnancy ending. Throughout our holiday, as I counted another week down, I got a bit more confident, a bit more hopeful. And even though I thought as I ticked of the 12 week and then 13 week mark that I was getting close to feeling sure the pregnancy had ‘stuck’ the stats were always in my mind.
When I miscarried, I was prepared for sadness, although not the all-encompassing grief that engulfed me and took over. But even that was understandable. I was grieving the loss of a baby and the addition to our family.
What I wasn’t prepared for was the anger. It started two days before we were due to get on a plane and head home. I woke up, and there in the pit of my stomach, I felt a heavy stillness that at times threatened to overtake me. At first, I was able to aim the anger at diabetes and to a degree, I still do. I cursed by body. MY stupid fucking diabetes made this happen. The rational side of my brain – which, in all honesty hasn’t had much of a look in lately – reminded me that an A1c sitting in the 6s would not have in any way contributed to the end of the pregnancy. The side that had been overtaken by anger simply disregards common sense. It does it well.
But diabetes – and me – were not the only targets for my anger. As is often the case, the people closest to me bore the brunt of my fury. Aaron was in the direct firing line and there was nothing he could do to avoid – or understand – where this was coming from.
As it became apparent that I’d need further treatment for the miscarriage – another D&C the week we returned home because the one in the US hadn’t been completely successful – I pulled away more. He was compassionate and concerned and I pushed him away. As we sat in the hospital waiting for my name to be called to go into surgery, he tried to hold my hand and I pulled it away.
I was short with my parents – especially my mother. I withdrew from them too and became silent and sullen. And angry.
I realise now though, that it wasn’t really anger towards them that I felt. It was just easier to yell or dish out the silent treatment or be nasty. Because the truth is that the anger was really directed at myself. I couldn’t tell my family that I felt that I’d failed them because I knew that they would tell me that it wasn’t the truth. I didn’t tell them that I was blaming myself for the miscarriage because they would try to make me see that it wasn’t my fault. I couldn’t tell them how much I was hurting or how sad I was because there were no words that expressed those emotions.
It’s been four weeks now. I still feel emotionally wrecked and my heart is heavy with sadness. There are moments when I feel my eyes fill with tears for no real reason – just because. But I can now look at myself in the mirror and not feel hopeless because my stomach has returned to its completely flat state. I can look at photos from our trip and smile at the memories rather than just focus on the fact that I was pregnant then. And now, I’m not. I’m healing and I’m breathing again and that is a victory.
I know that this is a stage on my way to acceptance. I just wish that there were a way that I could take loved ones along for the ride rather than attack them and alienate them.
This is the last time I’ll be writing about my miscarriage here. Diabetogenic is about real life with diabetes and despite trying with all my might, I can’t blame the miscarriage on diabetes. Thank you to everyone who has read, commented and sent their love through this time. It’s greatly appreciated.
‘Why do you use a pump?’ someone asked me the other day. I’ve been pumping for so long now that I’m not sure I can really answer that anymore. I use a pump because I have type 1 diabetes and I need insulin. I know that there are other ways to administer insulin, but at this stage of the game, I’m not even willing to contemplate them. Been there; done that. So I suppose the answer is I use a pump because I need insulin and this is the way I choose to administer it.
It got me thinking about the other tools I use for my diabetes management. I use a CGM because it gives me information about changes to my blood sugar and (frequently, but certainly not always) allows me to act before I end up really high or really low. It’s how I choose to try to keep myself in range.
And I use a BGL meter because I like the ability to know my real-time blood sugar. I also use it as a way to confirm what my CGM is telling me. I check my BGL a certain number of times a day – a number that changes and a number upon which I decide – because that number of times gives me a good snapshot into what’s going on. I choose to check with this regularity because it gives me the information I need.
Together, these things work for me and for my diabetes. Would these things work for you? Maybe. But I’m not the person to say. I’m not you and I don’t know your life and I don’t know what you expect from your diabetes management devices and tools. I’m pretty clear about my expectations – I want things that are as simple to use as possible; give me the information I need when I want it and allow me to react in as-close-to-real-time as possible so as to prevent high and/or low blood sugars.
There is no one size fits all when it comes to diabetes and anyone who has any idea of life with this condition knows that. We don’t need people telling us what the best thing to do is because that ‘best thing’ may, quite possibly, be the ‘worst thing’ for you.
Also what works today may certainly not be right tomorrow. There will be times in our lives that we need more from our diabetes tools. There will be times that we want to keep an especially close eye on what’s going on and other times that we can take a small step back and just get the basic information. There will be times in our life that we really can’t deal with any more than simple, uncomplicated, straightforward data because we are too overwhelmed or just plain over it.
Working out what’s right for you may take time and effort. There could be trial and error and starting on one thing and finding it’s terrific or deciding it’s not right and ending up exactly where you started. And that’s okay. Take the time; think about what you want and what you need; see how you can go about getting it. And then choose. Choose what’s right for you.
There are some days that I just wish I didn’t open the newspaper. This is one of them. On the front page of one of the sections of today’s The Age in Melbourne I was greeted with The Diabetes Time Bomb. Making sure that I wasn’t in fact ticking, or that I didn’t need to call in the Bomb Squad to evacuate the building as they worked out whether to cut the red or blue wire, I continued reading the article.
So glad I did. ‘Going blind. Getting your leg cut off. Kidneys packing up. Dying of a heart attack. The implications of being diagnosed with diabetes are shocking.’
They were the first words in this article. I nearly stopped right there. But, I kept reading, lured by the topic of diabetes. The thing is, the remainder of the article is really well written. It draws readers’ attention to the fact that there are increasing numbers of people being diagnosed with type 2 diabetes and it is being diagnosed in younger and younger people. It’s factual; it includes quotes from several experts using evidence-based information and there is an excellent case study.
But starting an article about diabetes with a shopping list of scary complications is alarmist and pointless. There is no context offered, no explanation of what they mean, no statistics and no concern shown for those of us living with diabetes every day. It’s damaging, inconsiderate and irresponsible reporting.
The Diabetes MILES study showed that 33 per cent of people with diabetes worry about the future and the possibility of serious complications. The authors tell me it is consistently the foremost concern of people with diabetes. Reading an article like this does nothing to reduce that distress and everything to accentuate it. Nor does it provide truthful and balanced information about diabetes complications. They are not inevitable. A 30 year old with type 1 diabetes has an 88% chance of still having good vision at age 60, and with newer treatments, chances are even better.
And for people without diabetes, why would they want to keep reading? There is nothing positive in a list that includes threats of blindness, amputation, dialysis and death. Head. Sand. La la la, not listening!
I am not saying sugar-coat it (pardon the pun!), I’m really not. Diabetes is serious, the statistics are scary, the costs are prohibitive – and we do need to address these problems now. We need strategies in place to prevent type 2 diabetes in those at high risk and, for people already diagnosed with all types of diabetes, to reduce the risk of developing diabetes complications. We need the Government (whoever that might be in 6 weeks’ time!) to adopt a coordinated national diabetes strategy and fund programs to address the issues.
And we need the media to highlight these issues. We need their reach.
But can it be done by focusing on the facts and what needs to be done? Keep interviewing the professional experts and the real-life case studies. Use evidence and talk about strategies that can help. And please, leave out the melodrama and the scare tactics.
Thank you to Professor Jane Speight, Director of The Australian Centre for Behavioural Research in Diabetes (Diabetes Australia – Vic and Deakin University) for her assistance with this post. As is often the case, I speak with Jane for a balanced, thoughtful and sensible response to my ranty, unbalanced, often ridiculous thoughts.
Diabetogenic 