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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.
The other day , I sat in a horseshoe shaped room and on a curved screen that wrapped around the room watched a video of a house and garden. The room was dark and as I concentrated on the moving images, I forgot about the other people in the room. The people sitting on the stools around me ceased to exist as did my companion who was sitting next to me unless he shuffled in his seat or leaned over to murmur something.
I was alone, focused and unable to be distracted by anything around me. The pictures were vibrant, stunning, bright. I was swallowed into the screen and felt myself wandering the gardens and peering into the rooms. I wasn’t a visitor or a viewer, I was in there; an active participant.
At the moment, I don’t really feel like I am an active participant in my diabetes management. I feel like I am on the outside looking in and am very easily distracted to think about anything but.
Right now, diabetes is taking a back seat as I deal with other far more emotionally encompassing issues. I am still coming to terms with the pregnancy loss I experienced almost four weeks ago and some subsequent concerns. I’m angry at diabetes right now, which is irrational given that it had nothing to do with the miscarriage. But I need something to blame, and I can grab onto diabetes; hold it up as the culprit. My faulty pancreas is taking a bashing at the moment as the scapegoat I need to try to make sense of what has happened.
But I know that this can’t go on forever and sooner or later I need to start to deal with my diabetes again. I am writing about it a lot, but I suspect that is a way for me to give it prominence and know that I am at least thinking about it.
It is times like this that having loved ones around who care about me and my diabetes can be a double-edged sword. While I am fiercely independent and can’t stand the thought of someone peering over my shoulder asking about my latest BGL , I probably do appreciate some concern and perhaps a little extra gentle involvement. I know that they are reluctant to step in, fearing my further withdrawal as I stupidly try to prove my independence. The truth is, right now, I need them to step in.
It’s a balancing act, because if your loved one with diabetes doesn’t usually welcome your help, how do you step up a little without attracting their anger? Testing the waters to see what level of involvement would be welcomed is probably the first step. If you’ve noticed that your loved one isn’t checking their BGLs very much – or at all, maybe asking if you can retrieve their meter from the depths of a handbag is a first step. Or if you see that the last spent CGM sensor has not been replaced, asking if there is a reason that they have not replaced it may have them talking about why they need a bit of a break from all the data. But at least they will be thinking about the rationale behind their actions.
Perhaps offering to take care of keeping hypo stores stocked or making sure that there is enough insulin in the fridge would be welcome. And inquiring about any upcoming medical appointments and offering to accompany them – with a promise of lunch or coffee – is a lovely idea.
Everyone is different and what works for some would not be appreciated by others. Often, when we are going through tough times – whatever they may be about – we are not looking for others to provide solutions. We don’t really want advice. We just want to know that people care, are standing by us and, if necessary, will help if asked. Hopefully, the period will pass and soon enough they will be once again an active participant in their diabetes management. But until then, be gentle, be involved and let them know that you are there. They will appreciate it. They really will.
‘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.
There was an interesting post in the diabetes blogosphere this week by a paediatric endocrinologist in the US. She tells the story of a young woman whose A1c didn’t match the numbers in her meter download. It turned out that she had found a way to manipulate the meter into giving false readings that, as it turns out, were all in target. I love that this blog is incredibly sensitive in dealing with these issues and there is no judgement directed towards the young woman in the story.
One of my biggest frustrations as a – often the only – consumer representative attending scientific conferences is the constant remarks about ‘non-compliant’ patients or snide remarks about false numbers in log books. Or the complete absence of logbooks.*
I have often wondered if the questions shouldn’t be about why the patient isn’t telling the truth but rather why they feel they can’t tell the truth.
I also don’t think that we should be pointing fingers and saying people who do this deserve everything they have coming to them and if they wind up with complications it’s their own fault. Really? Let’s dissect that for a moment.
I am pretty certain that no PWD who is not being completely truthful about their numbers is ever thinking ‘I am doing this because I want to get diabetes complications’. I am sure that as each day goes by without a consideration to diabetes – no BGL checks, limited boluses, food they are told not to eat etc – the PWD is not thinking ‘Goody – I’m a day closer to diabetes complications’. I am also sure that they are dealing with guilt, confusion, feeling physically below par and incredible frustration. They probably also feel isolated and don’t know where to turn. (Well done to Shara, the endo who wrote the blog, for referring her patient to a counsellor and actually spoke about the burden of diabetes. And thanked her for being honest.)
Let’s also for a moment just remember that blaming people for developing complications is really unfair. Yes, we know that by keeping our A1c under 7% we reduce the chances of developing diabetes complications. But keeping that A1c under that magic number all the time is incredibly difficult. So many things can throw off even the finest of efforts – stress, a virus, faulty insulin, a personally or professionally difficult time are just a few reason why.
And there are people for whom complications still develop despite doing all the things they’ve been told would help reduce the risk. Sometimes, it still happens.
I have an endocrinologist who was either born without the judgement gene or has simply beaten it out of herself (or perhaps had patients beat it out of her). I never feel judged by her. And for that reason, I feel that I can be completely honest with her. I can tell her that I’m not doing great and not checking my sugars as much as either of us would ideally like me to be.
I contacted her after my recent miscarriage to let her know what happened and said I’d be in touch. I didn’t call, A week or so later, she sent me a message saying that she’d had a cancellation this week and could see me. I could have made up a million reasons as to why I couldn’t go – work, family, too busy, not available at the time. Instead I simply said that I needed some time to regroup and I’d call her when I was ready. That’s how I feel. That’s the truth. And when I see her I’ll tell her more of the truth, which is after 13 weeks of intense diabetes scrutiny, I’m taking a break. I’m not checking my BGLs 20 times a day as I was (even while wearing a CGM constantly) so I’m not doing a heap of micro bolus corrections throughout the day. Right now, diabetes is not something that I particularly care about because I am grieving and just trying to get through the day. I bolus for what I eat, I have a constantly full reservoir and I am changing my line every 3-4 days as usual. That’s all I can do. It’s enough.
Another huge frustration for me is judgement from other PWD. We are constantly rallying against judgement from HCPs or people who know nothing about diabetes. In my mind, that intolerance of diabetes judgement extends to PWD. Can anyone honestly say that they live a perfect diabetes life and always have done so?
No? Then how about you check your judgement at the door? How about we ask the question why people feel unable to tell the truth? How about we consider the emotional state of the person behaving this way and ask what help they need to be able to do what is required to live a healthy life with diabetes?
And how about we just support each other and admit that sometimes diabetes is so hard that showing up for a medical appointment deserves acknowledgement and a pat on the back.
*Here’s an exercise for anyone who has ever been judgemental about creative number-entering into log books. Get yourself a diary and for the next twelve months, write down every item of food or drink you put in your mouth including the quantity. No cheating, no exclusions, no forgetting. Every single thing, every day for a year. How hard do you think that would be? Now imagine that you have do to that and show it to someone. How would you feel having to show someone the day where your whole diet consisted of a bloody mary for breakfast and an ice-cream sandwich for dinner? Actually – the three days in a row that you did that. Now do it for life.
Support comes in many shapes and sizes. When it comes to life with diabetes, I have always been lucky to have a support network village that consists of family, friends, a brilliant healthcare team and Nutella.
In the last few weeks as I have been dealing with more than just diabetes I have realised just how wide my support system really is and it’s surprised – and humbled – me.
Obviously, publishing an incredibly raw and honest piece on a news forum that gets over a million hits per month means that there are a lot of people out there who now know what I am living through. But then, I’m an oversharer, so ‘puttin’ it out there’ has never been something I’ve shied away from.
When it comes to diabetes, having that network to lift you up in times of frustration can mean the difference between sinking into a period of serious burnout and feeling like you have ways to cope. Knowing that there are people there to help you out – no matter the time of day – can be the difference between feeling isolated and feeling that you have someone’s shoulder to lean on. (I will once again send out a message to the DOC who has been that difference on more occasions than I could mention.)
One thing that I have learnt in my years having diabetes and when faced with particularly challenging times is that having someone say ‘Are you okay?’ or ‘I know this must be a hard time for you. I am here for you.’ helps more than words can say. Just knowing that people care and are thinking of you gives incredible solace.
We don’t always know what to say and we sometimes worry that our words may unintentionally hurt. So we say nothing. We think that it’s the better option. And perhaps we worry that if we ask someone how they are going, the chance of them dissolving into uncontrollable tears is something we just don’t want to risk. But personally, I’m always ready to take that risk, because I want people to know that they are being thought of and cared for.
Not everyone is comfortable talking about their life and not everyone is happy to ask for support. Sometimes we try to be stoic and strong for ourselves and those around us and sometimes we just want to pretend the crap stuff isn’t happening. Often, we don’t like to let people know we’re not coping or dealing with something particularly difficult. And in the time of Facebook when we only put forward our very best self (‘look! I’m on holidays/at a cool new café/eating Nutella’) we hide the tough stuff.
But when we do talk about it, it’s so wonderful and reassuring to have people reach out – it makes us feel safe. Right now, I feel so very safe and protected thanks to the many people who have reached out. And I want to say thanks.
Half and Half in iced coffee. God bless America!
After an absence from writing here and an absence from Australia, I’m back! Seven weeks away which involved attending a couple of fantastic conferences, visiting favourite cities and discovering new places, hanging out with old friends from the diabetes online community and making new friends, and spending quality time with my family. I was also introduced to the horror wonder that is American Girl much to the excitement of the eight year-old kiddo and the shock of her parents. I ate lots of yummy food and am in rehab for my Half and Half addiction.
Red velvet cupcakes make these girls happy!
Now I’m back and as I try to acclimatise to the weather (it was 40°C the day we left NYC and 7°C the day after we returned to Melbourne) and dealing with stupid jet lag, I am also coming to terms with a lot of other things. While we were away I had a miscarriage.
The Great Wall of Jelly Beans at Dylan’s Candy Bar in NYC.
I left Melbourne for Paris feeling hopeful – I was in the early days of a pregnancy, and Aaron and I were quietly excited about the much-longed for addition to our family. And until four days before we were due to come home, we got ever more hopeful and confident that we would be returning home with some extra special excess baggage and exciting news to share with our friends and family. It wasn’t to be. I miscarried just over 13 weeks into the pregnancy.
Hanging out in Washington Square Park
I am recovering slowly but surely. I know that time allows for healing. I also know that sharing stories and talking about things helps the recovery process. Yesterday, a piece about my miscarriage was published at Mamamia. You can read about it here. It is raw and emotional and I wrote it to try to explain to myself and others the conflicting emotions with which I was dealing at the particular moment when I had to let go of my hopes.
I’ll be back writing at Diabetogenic next week – sharing some of the things about my holiday and the conferences and talking about real-life with diabetes. And about how making my own Half and Half turned out.
Let’s go Yankees!
Today, for the first time in my ‘diabetes-life’, I am wearing a medical-alert bracelet. After a hypo last night that resulted in paramedics, IV dextrose and at-home hourly BGLs (just so I could avoid going to A&E), I pulled out of the draw the bracelet I bought a couple of years ago and put it on.
I have resisted wearing medical-alert jewellery for 15 years and I’m not really sure why. I have never been backwards in coming forwards about the fact I have diabetes and I am certainly not in any way ashamed of living with this condition.
But for some reason, in my weird and twisted mind, the wearing of a piece of jewellery that brands me as ‘type 1 diabetes/insulin pump’ (as the inscription on the back of the tag says) was just too much for me to deal with. I have always associated it with the idea that I would not be able to deal with my diabetes myself; that I’d need someone else to help me and that there would be emergency situations. I’ve pretty much avoided these circumstances so far. Until last night.
So today, I located the bracelet and linked it around my wrist. It’s quite pretty to look at, provided all I can see is the bracelet part and not the tag . But each time I catch a glimpse of it – as I am typing at my computer; as I sat in a café drinking my morning coffee; lifting my arm to push hair out of my eyes – I feel defeated and somewhat branded.
I’ve always wondered about people who get tattoos which proudly declare they have diabetes and I’ve never understood why anyone would do that. I just don’t understand why someone would want to have their health status permanently tattooed to their skin. I’ve always thought if I was to do that, I’d need to add all the other ways I want people to think of me. And having ‘Harry Potter tragic’ or ‘Delusions of Nigella Lawson’ scrawled up and down my arms would just be silly! Again, it’s not because I’m ashamed of having diabetes. Perhaps it has more to do with the fact that I defiantly go against what everyone else is doing and I quite like being the only ‘un-inked’ person in the room. Of course, this is merely my own opinion and I absolutely don’t think any less of people who choose to have a diabetes tattoo. Maybe if braver, I’d do it too.
I’m heading overseas in a couple of weeks for a long trip and for the first few days, I’ll be alone, without my family. It’s probably a smart idea to have something on me that says I have diabetes – just in case something happens. Maybe it will give me some peace of mind, as I’m sure it will my family.
But for today, I’m feeling fragile and not particularly happy. Not happy that now I feel unsafe and feel the need to have something that (in my mind, and I’m sure my mind alone) screams ‘TYPE 1 DIABETES’. I feel that it’s a victory to diabetes. And I hate losing.
Lauren’s Hope jewellery has some gorgeous designs. My bracelet has five strands of black Swarovski crystals holding together the medical-alert tag. It’s quite beautiful, really!
Diabetogenic 