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I was recently sent an article from Medscape that was written by Svetlana Katsnelson MD, endocrinology fellow at Stony Brook University Medical Center in New York.
The gist of the piece is that for a week as part of her endocrine fellowship training, Dr Katsnelson wore an insulin pump and checked her BGLs, and now believes she knows about living with diabetes. She also considers herself non-compliant because she didn’t bolus for an apple.
This may be oversimplifying the article a little and I honestly do believe that the intention here is good. But a little perspective is needed, I think. It was this comment that really upset me:
‘The experience provided me with a better understanding of how to use the devices that many of our patients use every day, but it gave me much more than that. I truly began to understand how difficult it is to live with diabetes.’
No, Dr Katsnelson, no. You do not truly understand how difficult it is to live with diabetes.
What you have is an idea of what it is like to walk around with a device delivering non-life saving saline into your system. You also have an idea of how it sometimes hurts when a sharp object pierces the skin on your finger. You probably could have deduced that anyway because, you know, sharp object, skin, nerve endings etc. You know how the buttons of these devices feel under your fingers and the weight of the devices in your hands.
You may have an idea of how tricky it can be to accommodate a pager-like device if you are wearing a pretty, flowing dress to work (if that is your want). You may now understand how annoying it is to have to stop what you are doing because it’s time to do a BGL check.
But what you don’t understand is that diabetes is about so very much more than that.
Here is what you don’t have any idea about.
You don’t understand the feeling of ‘this is forever’ or ‘I never get a holiday from this crap’. I know that this was acknowledged in the article, but really, you don’t know how it feels to never be able to escape diabetes.
You have no concept of the boredom of living with a chronic health condition, or the monotony of doing the same tasks each and every day over and over and over again!
You don’t understand the fear that overtakes your whole being as you imagine all the terrible complications that have been threatened and promised as result of diabetes.
You have no notion of the frustration of living with a condition that doesn’t have a rule book – and in fact changes the rules all the time!
You haven’t any perception of the fear I sometimes feel that I’ve passed my faulty genetic matter onto my beautiful daughter; or that I am a burden to my family and friends.
You will never feel the judgement from healthcare professionals because numbers are too high or too low – or that there are not enough of them.
You will never be called non-compliant by a doctor or made to feel guilty because you are eating a cupcake – all because your beta cells decided to go AWOL.
While I really do commend the notion of HCPs trying the ‘day in the life’ (or ‘week in the life’) idea, I think that being realistic about what this experience provides is important. It does not give any insight into the emotional aspects of living with a chronic health condition. It doesn’t explain the dark place we sometimes go when we are feeling particularly vulnerable or ‘over it’.
I have to say that all in all, this article left a sour taste in my mouth and I don’t like to feel that way because it sounds like I am being Grouchy McGrouch. I’m not. And as I said, I think that the intention here is good.
I just don’t want Dr Katsnelson to think that she now knows what is going on in my head when I wake up at 4am and every terrible scenario plays out leaves me feeling a pressure on my chest and a blackness in my mind that threatens to overtake me.
But I also want Dr Katsnelson to know that I really don’t expect healthcare professionals to know and understand all of these things. I expect them to treat me with respect and dignity. If this exercise has helped that, then great, but please, call it for what it is.
The article discussed in this post (Svetlana Katsnelson. Becoming the Patient: Not as Easy as It Looks. Medscape. May 12, 2014.) can be accessed here by first creating a free login.
I don’t deal with stress particularly well. I shrink away.
I don’t eat; simply unable to stomach the thought of food or drink and getting through the day with water and gagging on whatever I force down.
I also go to ground, staying at home, not wanting to engage with anyone, switching off online, not blogging or posting to Facebook or Twitter or Instagram.
Recently, I caught up with one of my best friends after a (very unusual) three week break. ‘What happened?’ she asked. ‘The last time we saw each other you said you weren’t feeling great and then I didn’t see you for three weeks and you didn’t respond to my messages.’
I stopped and thought about it. And realised it wasn’t her that I was trying to avoid – why would I? She is nothing but supportive and wonderful and lovely. It was me.
‘I’m sick of myself,’ I heard myself saying. ‘I am sick of what’s going on. I’m sick of the diabetes burnout I’m experiencing. I’m sick of it all. I just want to disappear.’
I wonder if that is what I am trying to achieve when I am dealing with a stressful situation.
I stop eating and see and feel myself shrinking away.
I stop standing tall, instead wrapping myself in blankets and jumpers, folding into myself and taking up less space.
I stop seeing people so I don’t have to hear myself talking.
I limit my online presence, making my cyber-self withdraw.
Am I trying to make myself disappear somehow? Shrink away from the world and my problems?
I want to take up less space, not fill a room, curl into a corner of my bed. I want to be small. And insignificant. Because what I am dealing with seems so big – too big – and momentous. I want to be less weighty because the problems are bearing down on me.
I see this clearly when I emerge from the fog. As I stretch and look for sunlight and see people and engage again, I find my voice and start to feel bigger. Literally and figuratively.
It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today’s we’re writing about the emotional side of diabetes. Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!
There is a dark place in my mind that is locked most of the time. Usually, I manage to keep it closed away and it remains hidden.
And when I am feeling strong and robust and life is moving along at its usual pace without too many problems, I am not tempted to go to the dark place, to open the door and examine what’s hidden.
But when I am feeling vulnerable – for whatever reason – and my defences are down, I peek. Stupidly, I go in, treading carefully, cautiously looking around. To the dark place.
The dark place is the fear that lives inside of me about diabetes. It’s the fear of today, of tomorrow. And of the unknown. It scares me and it scars me. It makes me feel fragile; breakable. And highlights how broken I am.
In the dark, I feel the relentless-ness and the never-ending-ness and the overwhelming-ness of diabetes that I usually simply expect – and accept. Suddenly, the day-to-day and more-than-manageable tasks that I need to do seem impossible, daunting, too big to contemplate.
The dark place is quiet, the only sound is my amplified heartbeat.
I’ve learnt to breathe slowly, see the dark place for what it is, allow myself time to visit, accept what is there and then close the door. I come back and face the light and life and the people I love. I go to work, I see my friends, I bake, I drink coffee, I listen to music. I look like I am living my life – and I am. But when I’ve visited the dark place, I am scared and look over my shoulder. I feel oppressed and fatigued. It takes me a while to fully come back – sometimes only a day or two, sometimes longer.
This is my emotional side of diabetes. This is the dark place. This is the exhaustion of diabetes.
It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. The first topic for the week asks us about the diabetes causes and issues that really get us fired up. Here’s what I have to say! Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!
I am not in any way foolish enough to believe that what I write on this here little blog or the work I do as a diabetes consumer (patient) advocate has the ability to change the world.
But I am confident enough to believe that my messaging is strong and that I generally stay on topic.
There are many things that I feel passionate about when it comes to being a diabetes advocate, but nothing more so than who is in charge of driving the diabetes bus. And that is the person with diabetes.
There is so much written about patient-centred care. Google it and you’ll come up with a…well a google of links. But despite much of it talking the talk, I’m not sure that it really walks the walk. The idea of patient-centred care is often at odds with policies and procedures of healthcare settings making it difficult for the person with diabetes (or other medical condition) to really be in the driver’s seat.
For the person with diabetes to be truly in control (and I’m not talking control in the sense of their BGLs, I mean in the sense of decision making) everyone needs to really subscribe to the model where the patient is smack bang in the middle of the picture, directing traffic, and making the ultimate decisions.
This doesn’t mean that it is done in isolation. No. It’s the exact opposite really.
It means that with support from HCPs, from diabetes organisations, from peer groups and from the health system, the person with diabetes is armed with all the information needed, given the right guidance, shown all the choices. And then, with all of this, they make a decision as to what they believe is the best thing for them. Nothing is withheld, everything is discussed, all options are in the table and considered.
I have too often had the options taken away from me. While I am pretty good at standing up for myself, it is exhausting at times to have to fight for my care to be the way I want it to be. And it’s frequently when we are at our most vulnerable that we have to fight the hardest. Hospital admissions (planned or emergency), times of extreme diabetes burnout or when we’re struggling to stay on track are the times that we often need to stand up for ourselves…even if we don’t have the energy, the inclination or the desire to.
When push comes to shove if I am charged with dealing with this condition 8,736 hours a year, then I AM driving this bus. The role of the support team around me is to give me suggestions and options about how to navigate, but then let me decide if I’ll turn left or right. And come along for the ride – even if they don’t necessarily agree with the road I’ve chosen.
Today, I’ve also written a post at the Diabetes Australia – Vic blog about another cause close to my heart – The Diabetes Stigma Project. Have a read!
Last week, I attended a workshop given by Rosie Walker who is a UK-based diabetes and education specialist. You can read more about Rosie and her independent company Successful Diabetes here. The focus of the session was diabetes consultations and I was eager to go along as the ‘consultee’ as opposed to the consultant (most of the other participants).
One of the topics was how consulting rooms can be more ‘patient-friendly’. After this discussion, I asked if we could, for a moment, steer the conversation to waiting rooms.
I see my endo in private rooms and there is nothing particularly offensive about the room I wait in until she calls me in. It’s quiet, there are plenty of chairs and some out of date magazines on the table. I’m always pleased that there are travel mags, so I can do a little armchair travel as I while away the time.
My GP’s waiting room is a little more bustling. It’s larger, the phone doesn’t stop ringing and, because it is a very busy practise, people come and go constantly. There are signs on the walls asking people to not use their mobile phones while waiting to see the doctor in an endeavour to keep some of the noise down. The magazines are about health and wellbeing or home renovation. And golf. Someone in the clinic is a golfer and recycles their mags in the waiting room. Again, pretty innocuous and not an unpleasant way to spend some (often considerable) time waiting for my name to be called.
But I have seen some slightly terrifying things in waiting rooms that have made me want to turn around and walk out. Once, in a presentation I was giving in the waiting room of a diabetes clinic, I did actually draw attention to the horrendous poster which depicted graphic images of amputated toes.
I am not sure who thinks that it is a good idea to put up scary photos of ‘what will happen if you defy me’ in waiting rooms. Is there any logic in showing photos of amputated limbs, eyes with diabetic retinopathy or terrifying slogans of ‘diabetes is deadly serious’? Does this make people skip into see their doctor eagerly, or fear they may be threatened? At its worst, it’s akin to bullying. At best, it’s thoughtless and unnecessary.
Often, people sitting in waiting rooms are already anxious and scared about what is waiting for them. Will there be results from tests that could be bad news? Will the HCP be cross because diabetes hasn’t really been a priority lately? I know that I am often apprehensive about what is waiting for me behind the doctor’s doors and I don’t do HCPs who do judgement.
Waiting rooms need to be a safe haven, free of judgement, nastiness and fear. They need to calm us down and make us feel that we can be open and honest once we get to see the doctor.
For me, my dream waiting room would look like this:
Lots of natural light so I can see outside; not too much noise, but equally not so silent that I’m afraid to speak; details about relevant information events coming up; a barista in the corner making the perfect coffee (I said DREAM waiting room); comfortable chairs; free wi-fi; no TV blaring health messages (although, one of my HCPs does have Bold and the Beautiful on loop, so I get to catch up on that when I’m in their waiting room once every 12 months); gorgeous prints on the walls (absolutely no scary photos); a pin board with research news.
In lieu of perfection, however, I’d just be happy with a comfortable chair, some architecture and house porn and a water station. And a lovely, non-judgemental HCP on the other side of the door.
What do the waiting rooms you’ve spent time in look like? What would you like to see?
Technology in diabetes has come a long way in recent times. In the almost-sixteen years I’ve had diabetes, we’ve seen the advent of ‘smart’ pumps, CGMS and even trials of closed-loop systems that make the artificial pancreas seem a real possibility in the not-too-distant future.
BGL meters are smarter too, with new ones having built-in wizards to help keep track of insulin on board to avoid stacking-induced hypos. Carb to insulin ratios and insulin sensitivity factors can also be programmed to help calculate the amount of insulin required, taking into account how much insulin is still active, the carbs in what you are about to eat as well as your current BGL. These calculations, once the domain of pumps only, can now be used by all people with diabetes with minimal training.
There are aggregate apps that pull together data, make them into pretty graphs and assist with finding patterns, highlighting problems and allowing the user to send the information to their HCPs for online discussions (or follow up at your next face-to-face appointment).
There is data everywhere and we can track, estimate and predict our BGLs, insulin doses, carb intake. It’s all there for the taking.
And it can be overwhelming.
If information is power, then with this much information at our fingertips, we should all be incredibly powerful! But sometimes rather than power, instead I find it’s information overload. I stop responding to the data because there is just too much of it. In the same way that we are bombarded with social media updates so we stop listening, the never-ending data stream become white noise, too hard to distinguish anything of any real meaning.
I mentioned that in an endeavour to keep things simple, I stopped wearing my CGMS. There was no point in attaching an $80 sensor if I wasn’t going to be doing anything with the numbers it was constantly giving me. Instead, it made sense to do whatever BGL checking I felt I could manage and actually respond to the information in a meaningful way.
I’m still enjoying this lower level of data collection and am finding that it has contributed to be staying on track, rather than contributing to a season of burnout. Tailoring the information I can deal with is a smart way for me to ‘cope’ without being the data nerd I am at other times.
You will never hear from me that the technology available in helping manage our diabetes is a bad thing. You will never hear me say that it is a waste of time or pointless or an unnecessary expense. But I will say that I think there needs to be an acknowledgement and understanding that sometimes it’s just too much and can result in feelings of desperation, exhaustion and a sense of it all being just too much!
If you are finding that all the data is excessive and paralysing you into inactivity, think about cutting back the information you are collecting to the basic minimum. This, of course, will be different for everyone and there is no right amount of data for everyone. Being safe, feeling satisfied and being able to cope with what you are getting is key.
It’s Friday! So here are the Pogues.
Also – would you vote for me in the Australian Best Blogs 2014 Competition? Click here to be taken to a short survey and select Diabetogenic (half way down the first page) as your blog of choice. Thank you!!
There has been a lot of hoopla on social and mainstream media about a mum who posed in a crop top and shorts, surrounded by her gorgeous three young boys, showing off her body, with the words ‘What’s your excuse’ emblazoned atop the picture.
The image is lovely (they’re all in red; Photoshop in a couple of reindeer ears and a Santa hat and she could use it for her 2014 family Christmas card). But what is not so lovely is the accusatory and more than slightly judgemental text that comes with it. What’s my excuse for what? I’m not really sure what she’s asking. Is she asking what my excuse would be for not having a body like that? That’s an easy one to answer. I don’t like exercise and just the thought of doing sit ups makes me want a bacon sandwich. Also, I don’t care. And also, I don’t particularly see that I need an excuse for looking the way I do look. Or don’t look.
Can you imagine if I put up a photo on this blog of me surrounded by the things I do (family, friends, work, baking cupcakes, eating cupcakes, going to music gig, drinking coffee, writing, watching ‘House of Cards’, enjoying the latest anime movie at home with our nine year old, dancing around to Billy Bragg*) holding a lab result with an A1c of 6.5 per cent with ‘What’s your excuse?’ above my head?
My A1c is not 6.5 per cent right now, and quite frankly, I don’t look for excuses as to why that’s the case. But even if I was sitting in that sweet spot, it’s not my job to question others as to why they are not. It’s none of my business and it also promotes that ridiculous idea that as long as my A1c is in target then I’m a success.
I think of the times when my A1c has been what is considered ‘perfect’ and I know that it hasn’t signified that I’m winning at life. Or even diabetes for that matter.
When I was pregnant (with my daughter as well as other times when I miscarried) my A1c sat in the mid 5s – low 6s. But I was checking my BGLs every 20 minutes and any result above 8mmol/l had me in tears as I worried about what I was doing to the developing baby. I would panic as I waited for my A1c results, fearing a number that would suggest I wasn’t being the best mum-to-be I could.
Periods of extreme stress when I don’t eat much also result in much lower A1cs, but the stress and anxiety I’m experiencing don’t really suggest to all else in my life being great.
We can’t point to a number (whether that be a diabetes number or a number on the scales) or how we look in a crop top as a measure of success.
I am all for celebrating people’s successes. I love it when my friends with diabetes have been really working hard at reducing their A1c and tell everyone about it. It’s great news and it should be celebrated. But that’s because it’s about them and what they have done. Not about why others are falling short.
Enough with the judgement folks. You want to rejoice in something you are proud of – knock yourself out! I’ll celebrate with you. Just don’t do it at the expense of others.
*It’s Friday. Dance around to Billy Bragg!
When there is a lot going on in any aspect of life, the KISS principle makes a lot of sense. And given that when I’m busy, I often get stupid, keeping things simple is a really good idea.
At the moment, I am just waiting for one or more of the balls I have in the air to crash to the ground. In the meantime, I’m trying to simplify things to manageable levels.
While that may mean taking some shortcuts – preparing extra portions when cooking so I can make one meal stretch to two or saying no to things I’d ordinarily say yes to – I’ve learnt that paring things back to the absolute minimum is sometimes incredibly refreshing.
In an endeavour to ensure that I am able to manage just the basics of my diabetes management so I am happy and don’t feel like I’ve dropped the faulty-pancreas ball, I have really cut back. The necessities don’t go (insulin gets delivered; BGLs get checked etc.) but the extras do get put on hold for a while. The post-meal BGL checks are not as frequent and I made the decision to not wear my CGM for the moment because I wasn’t doing anything with the data. I dealt with any alarm by silencing and ignoring it; not acting to remedy what it was telling me was wrong.
So what does this mean? Well, my average BGLs are probably going to be higher, and the variance between my higher and lower readings will be greater. As a result, my next HbA1c is probably going to be less impressive than the last.
But I am not feeling overwhelmed and I don’t feel like I am failing diabetes. I have made a conscious decision to dial back on my usual level of care to something that I feel that I can achieve. While my diabetes care may be less, my mental health hasn’t really taken a beating. It means that I feel okay about my diabetes and okay about my wellbeing. I suspect that the result of not cutting back may have been both falling in a screaming heap.
Keeping it simple keeps me in line; it keeps me content and it keeps me happy. Win, win. KISS KISS!
On Saturday night, before delving into the craziness that was White Night, I attended the launch of a terribly exciting new resource. Enhancing Your Consulting Skills; supporting self-management and optimising mental health in people with type 1 diabetes is described as an ‘education resource for advanced trainees in endocrinology and other interested health professionals’. That’s right. It’s written for health professionals who will be working with and for people with type 1 diabetes. 
I attended with a dear friend who shares my pancreatically-challenged state. We also share the same endocrinologist – one of the collaborators on the resource – and were there at her invitation. We know just how lucky we are to see an endo who understands self-management, ‘gets’ the fact that burnout happens and doesn’t have a judgemental gene in her body. We know that having an endo who we can email in between appointments is a privilege we would never abuse. And we know that living in the inner city means that we have access to healthcare that many others can only hope for.
Hopefully, this resource will mean better education of new endo trainees and that the care we are so fortunate to receive will be available to many more people with diabetes.
This resource is a huge step forward in medical education. It is the first time that the needs of people with type 1 diabetes have been directly addressed with a strong focus on self-management and mental health. As Professor Alicia Jenkins highlighted in her speech, people with type 1 diabetes spend, on average, three hours per year with their healthcare team. The remainder of the time we’re doing it alone. There is no treatment option other than self-management and an understanding of how HCPs can support that is critically important.
Endocrine trainee, Michelle, gave a candid speech how she has come to view people living with diabetes. She said that when she first started attending a young adults with diabetes clinic, she was frustrated and said that she blamed her patients for not getting the results she expected. This honesty was refreshing and it was so pleasing to hear how she now knows to focus on the positives rather than negatives when working with PWD.
Dr Jennifer Conn gave a warming speech about how she never stops learning from her patients. This humble attitude is one of the reasons that this book is so well written. It acknowledges the expertise held by the person who lives with diabetes and knows their condition better than anyone else possible could.
I looked around the room and saw that there with the glitterati of the diabetes HCP world, were some of the pancreati – the people with diabetes who the book was written for. It’s a tribute to the writers and organisers of the launch event that people with diabetes were invited.
I’d like to congratulate the team who have put this together, and the NDSS for supporting the development of the resource. This is a win for people with type 1 diabetes and I can certainly see similar volumes being written for type 2 diabetes and, indeed, other chronic health conditions.
At the end of the event, I wandered back out onto the Melbourne streets, waiting for nightfall when the city would light up and fill up with hundreds of thousands of people. I looked at my friend and thought how lucky we are – a night of Melbourne brilliance kicked off with hope for a better future for people with diabetes.
Disclaimer
One of the collaborating writers involved in this resource is my endocrinologist. I was asked to provide comment on some sections of the book and my photo and a screen shot of this blog are included in the final book. I did not receive any payment for any of this involvement.
The development and printing of this book were funded by the National Diabetes Services Scheme (NDSS) which is administered by Diabetes Australia. I am employed by Diabetes Australia – Vic.
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