You are currently browsing the category archive for the ‘Awareness’ category.
It’s Diabetes Blog Week thanks to Bitter~Sweet Diabetes. This week, over 150 diabetes bloggers from all over the world are taking part and sharing stories about their lives with diabetes. This is the second year I’ve participated and I can’t wait to read what everyone else is up to. So, here we go with Friday‘s topic……
I’m afraid that I have no desire to swap type 1 diabetes for another chronic health condition. I’m not interested in starting all over again and becoming an expert in something I had no real desire to learn about in the first place. ‘At least it’s not cancer,’ I’ve had people tell me in an excellent example of apple/orange comparison. I’m sorry, but I don’t like the idea that one condition is a consolation prize. Diabetes certainly may be a manageable condition but, unless a transplant is involved, there is no opportunity for remission. It’s also a condition that doesn’t understand the concept of taking a break or letting up on the care required to look after it as best I can.
For me, the silver lining in this whole diabetes palaver has always been the people I’ve met.
The DOC has been an amazing source of support– there is never a time of day when I can’t log onto something and find another PWD up and ready to shout out a word of encouragement. There have been many times a middle-of-the-night low has been accompanied by someone from the other side of the world chatting away and then checking in on me. Feeling alone when you join the DOC family is impossible.
One recurring theme in the DOC is annoyance aimed at people who don’t get what we’re going through and those who say stupid things. I see this again and again and it is one of the reasons that I am a lot more careful about what I say to people I know, or meet for the first time who are living with a different medical condition to mine. I have no idea what someone living with a condition like Parkinson’s or cystic fibrosis goes through, so it would be ignorant of me to think I could understand and start offering advice on how they could better manage. I like to think that I am far more sensitive to the sensibilities of living with a chronic health condition and while I will never say ‘I know what you’re going through’, I can appreciate the frustration of having to consider your health at times when you would rather just be enjoying a cupcake.
I do wonder if my approach to other people with health conditions is because of my personal experiences or just plain common sense and good manners. The things people say are sometimes insensitive, thoughtless and plain stupid. But you know, you can’t cure stupid; which is certainly one chronic condition that I wouldn’t trade diabetes for.
Follow Diabetes Blog Week on Twitter by searching the #DBlogWeek tag.
It’s Diabetes Blog Week and this is my Tuesday post which was first published at the Diabetes Australia – Vic blog.
It’s Diabetes Blog Week thanks to the very clever Karen Graffeo at Bitter~Sweet Diabetes. This week, over 130 diabetes bloggers from all over the world are taking part and sharing stories about their lives with diabetes. This is the second year I’ve participated and I can’t wait to read what everyone else is up to. I’m in for a lot of very late nights! So, here we go with the topic of Monday……
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your daily life with diabetes? On the other hand, what do you hope they don’t see?
I have frequently commented on how lucky I am to have a health care team that consists of some pretty amazing people. My endo actually does read my blog and recommends it to not only other people with diabetes, but also to endos-in-training. I completely understand how unusual this is, but it makes me realise just how fortunate I am to have a HCP who has some insight into my real-life with diabetes. Or at least, the things I’m prepared to share!
So, because of that, I’m going to concentrate on the second part of today’s topic – the things we don’t want them to see.
And the truth is, there’s nothing I don’t want them to see. I could say that I’d prefer they didn’t know about the days where my meter doesn’t see the light of day as it languishes around the bottom of my bag; or the days where my CGM graph looks like a mountain range; then there are the days where I know I should do a line change, but can’t be bothered and just deal with the higher BGLs and the angrier and redder cannula site; oh, and the culinary delightful days where my total nutritional intake consists of three coffees, a jam doughnut and a piece of toast with Nutella.
But I believe that this may be called life. And it’s important that they know these days are kind of typical! I am not perfect in any aspect of my life, so why should I pretend to be when it comes to my diabetes? And why should my HCPs be presented with only the stuff I do ‘right’?
I want my HCPs to see real-life with diabetes; which is basically real life. With diabetes sprinkled on top! We all have so much more going on. Diabetes? Of course it’s a part of me, but it needs to fit in with the rest of my life. And for me, that’s one of the most difficult things about life with diabetes. How do I manage to do the things I’d like to do to feel healthy, strong and well but keep things in perspective?
Actually, perhaps that’s one of things I’d like HCPs to see and know – I’m trying. Each and every day I’m trying. And that is more than enough!
Follow Diabetes Blog Week on Twitter by searching the #DBlogWeek tag.
I am lucky when it comes to my diabetes support network. I know this and I will say it several times in this post. I also know that I am likely to come off as being ungrateful which is not the case at all. Today, I want to explore the idea of how these support people are identified, either by themselves or by people living with diabetes. Specifically, I want to talk about the term carer.
The Oxford Online Dictionary defines carer as:
a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.
I don’t have a carer. I am the person responsible for living with my diabetes, but I do not have a disability and I certainly don’t consider myself sick. And, although I’m pushing a ‘significant age’ I am not yet elderly.
I understand and completely believe that there are people who are really and truly carers. There are people who are responsible for feeding, toileting, bathing, communicating for another who is unable to do it themselves. I am not referring to instances like this. I am referring to, I guess, diabetes.
I don’t consider my husband, who is involved in my life with diabetes to be my carer. He’s my husband, my partner.
Living with diabetes is not a solo game for most and this is a truly wonderful thing. We get support and help from people and I for one feel very fortunate to know that I have people (family, friends, healthcare professionals), I can rely on if I need them.
But I don’t consider any of them my carer. I would refer to them as my support network. In the case of my HCPs, they’re paid to help me with the things I need.
My husband would never say that ‘we’ are a family with diabetes. He would say that I (his wife) have diabetes. Not for one moment would he consider himself to be living with this condition even though he regularly is part of it. But as far as ‘ownership’ goes, it’s mine. He will step up as much or as little as I ask and in the few times it’s been necessary, he’s taken over, done what’s needed to be done and then, when safe, stepped back.
My independence and confidence in my ability to self-manage comes from being given the space from those around me to do what it is I need to do. I know there have been times when Aaron would like to sit me down and force feed me glucose because he can see that I am low. As I stand at the open fridge and in my hypo-fog state try to calculate the carbs in a cucumber (yes, I know!) he has had to just step back and let me work it out myself, stepping in if asked.
I see this like watching my daughter do something in a way that is frustrating to me. I would love to jump in, show her how to do it far more effectively (or do it myself) and then move on. But her self-confidence and her ability to trust her decision making process needs to be encouraged, not overshadowed by a parent who insists on taking over all the time which suggests that she cannot do anything herself.
To me, the term carer implies helplessness. I get that diabetes is a lifelong condition and that there are stages in a person’s life when they may need extra care. For example, children with diabetes are reliant on their parents for the day-to-day management tasks. But is that being a carer or is that called parenting albeit with an incredibly extra degree of difficulty? Or what about an adult with diabetes who is having a period of hypo unawareness and their partner is required to, at times, inject them with glucagon? Is this being a carer or is this just doing what partners do – look after each other at a time of illness or need?
What about when I am lying in bed, unable to move because my BGL is high, I have mild ketones and am vomiting? As I decide whether or not I need to take myself off to A&E, my husband is holding a bucket in one hand and my hair in the other. I don’t consider him to be my carer, any more than I considered myself to be his carer when he hurt his back and I was warming up a heat pack and giving him pain killers every four hours.
I don’t in any way want to undermine the importance, help or value of the support I receive. I don’t for a minute want to say that I don’t need it or resent it. But equally, I don’t want to be considered as being helpless. The relationships I have with people where diabetes is sometimes considered are based on incredible respect – from both parties. They respect that I am the one who is living with this and dealing with it and I respect the way they allow me to do that.
Okay, over to you. Do you consider the people in your life to be your carers when it comes to diabetes, or do you consider yourself to be the carer of someone with diabetes? Is there another term that you use or prefer?
I hate to jump on any bandwagon, but I’m jumping on this one – boots and all! Some of you may have seen the petition that is going around at the moment about changing the name of diabetes, or rather revising the names of type 1 and type 2 diabetes to better reflect the nature of the conditions.
Yesterday, I read a most thoughtful and well-considered commentary on the issue by Queen of Diabetes Art Lee Ann Thill. (I don’t know Lee Ann personally, but I adore the work she does around Diabetes Art Day and her brilliant project the VIAL Project.)
Lee Ann suggests that changing the name of type 1 diabetes to better distinguish it from type 2 diabetes is not going to do anything when it comes to public understanding of diabetes. She’s right. Stop for a minute and think back (if you can) to a time where diabetes wasn’t part of your life. How much did you truly know about the condition? Did you even know there were different types of diabetes? Could you identify the myriad ways type 1 diabetes is treated?
Did you know that there are four types of multiple sclerosis? No, neither did I until I asked Dr Google. (Although, I did know that there was one called relapsing-remitting MS because that’s what Jed Bartlet had in The West Wing, so naturally, I’m an expert on that!) And is it really important that as a person who has no connection to anyone living with MS that I have an in-depth knowledge about it? Or understand how it impacts on the life of a person with MS? Should I be expected to understand that primary-progressive MS is different to progressive-relapsing MS? My tiny little brain is already pretty full of information I need (location to closest decent coffee shop) and useless info (being able to quote Marx Bros films), so I’m not sure that I have room for minute details about living with MS or any other health condition other than the one I have to deal with daily.
I understand how frustrating it is to have people tell me that they can cure my diabetes if only I’d stand on my left foot under the full moon on a Tuesday in November and lots of other things. But I don’t think that changing the name of diabetes is going to stop people offering these gems.
What we really want to fix are the people who are being stupid and insensitive. And I’m afraid that’s just not going to happen.
Diabetes sucks – I think that’s one thing upon which we can all agree. And there are some really significant and important issues that people living with this condition face on a day-to-day basis. Such as access to healthcare and to technology; inadequate healthcare; kids being safe while at school; discrimination in the workplace; emotional wellbeing;
None of these issues will be solved or made better for people with diabetes by changing the name of the condition. More funding is needed to improve access to technology and increase the number of HCPs (especially in rural and remote areas); better education and training is needed to improve HCPs’ knowledge about diabetes and real-life with diabetes; more training – compulsory training – is needed by the people who are charged with looking after kids in school and out of school hours care; tougher penalties may stop discrimination in the workplace; regular screening is needed to identify the emotional health of people with diabetes.
Surely, but surely we should be directing our energies towards these issues. I have accepted that when it comes to diabetes I am going to spend the rest of my life dealing with ignorant, stupid and insensitive comments from people who could be described using similar adjectives. Changing the names of type 1 and type 2 diabetes won’t magically make people stop being so ignorant. It would simply add another layer to the confusion.
Yesterday, the same question was posed to me twice: ‘How would you like health professionals to deal with people living with diabetes?’
The first time was after a short presentation I gave to a team of physicians visiting Australia from Thailand. I am incredibly privileged in my role at Diabetes Australia – Vic because I get to meet some amazing people from all over the world. The visiting doctors were very interested in our program and asked some great questions about how we run things – especially around the value and importance that we place on peer support and peer networks.
The second time was as part of last night’s OzDOC tweetchat. I was moderating the hour of rapid-fire diabetes cyber-chat, but it was Kim Henshaw who had come up with the ingenious topic of swapping places with our HCPs. Kim had posed some really thoughtful questions about how we would like our HCPs to respond in certain situations. The answers were amazing.
When I was asked the question for the first time -almost as I was walking out of the room after my presentation yesterday – I didn’t hesitate to answer.
‘Without judgement,’ I said. But then I felt that I needed to qualify that with, ‘And for them to realise that I live with this 24/7 without an opportunity for a break. I am doing all I can and there are going to be times that it is just too much.’
‘Thank you,’ the doctor who asked the question said.
‘Oh, and that it’s not all about numbers,’ I added quickly. ‘My A1c, blood pressure, weight, cholesterol – all my numbers – don’t give you anything more than a snapshot of a particular metabolic thing. I am much more than that.’
‘Good – that’s great. Thanks,’ said the doctor
‘And,’ I jumped in (guessing by now he wished he hadn’t asked the question), ‘It’s about more than the clinical side of things. My emotional wellbeing is just as important and if I am feeling burnt out emotionally, it’s highly likely that I’ll be struggling to get the day-to-day physical tasks done.’
‘Right. Thank you. Our next speaker is here,’ he said.
What he didn’t realise was that the next speaker was the fantastic Professor Jane Speight from the Australian Centre for Research in Diabetes. Later on she thanked me for setting the stage for her and what she was about to talk about. I thanked her for so eloquently providing the evidence to support my rantings!
I was more than ready for that question last night at the tweetchat!
Recently, I bought my husband a book called Three Wishes – An Intimate Look at Jazz Greats. I was in a local book and music shop looking for a copy of a documentary about the Baroness Pannonica de Koenigswarter who was a fascinating woman. She was a jazz patron and writer who moved to New York in the 1950s. Unfortunately, the DVD wasn’t in stock, but the bookseller suggested this book instead. I’m so glad he did.
The book is gorgeous – beautiful, archival photographs of jazz musicians. And each of them was asked the following question by the Baroness (who also took the photos): ‘If you were given three wishes, to be instantly granted, what would they be?’
How delicious! You can only imagine the responses she received from these great men and women of jazz.
I inscribed the book for Aaron with my three wishes and I’m afraid they weren’t anything ground breaking – health, happiness and something about New York. Quite generic, really. A lot of the responses in the book were about the musicians’ musical hopes, wishes and dreams.
So I decided to reframe the question and ask it in a diabetes context: ‘If you were given three wishes regarding diabetes, to be instantly granted, what would they be?’
Would we need three wishes? Surely for just about all of us, the first wish would be ‘cure diabetes’ and then we could be done with it! No more diabetes, and I’d be writing about cupcakes and coffee. And maybe doughnuts to keep things interesting.
But I think there is more. Because surely, if our first wish is a cure, we need to qualify that – it must be for everyone. It must be achievable, available and affordable. And surely, but surely, we should also be asking for a vaccine so that never again does anyone have to live with this condition. `
Today, there is no cure and, even more, there is no cure just around the corner. So maybe, with this in mind, my wishes would be a little more realistic. Perhaps those three wishes would like this:
- I wish the technology we have today was available to everyone. I wish every single person who wants access to the latest insulins, devices, treatment options can have it at their fingertips;
- I wish every person with diabetes could have access to a team of health professionals who are smart, sensitive, non-judgemental and understand what life with a chronic health condition like diabetes is all about. And that mental health screening was available to everyone – with proper follow-up treatment.
- I wish everyone knew about and had access to the DOC and peer support networks.
Again, maybe not ground breaking. But equality of care? I think that is certainly something worth wishing, hoping, praying, dreaming about.
I put the first question to Thelonious Monk….
“If you were given three wishes, to be instantly granted, what would they be?”
He was pacing back and forth, and he paused for a moment to gaze out across the river at the New York skyline. Then he gave his answer.
- To be successful musically
- To have a happy family
- To have a crazy friend like you
And I said, ‘But Thelonious! You have those already!”
He just smiled and began pacing again.
Three Wishes: An Intimate Look at Jazz Greats
What are your three wishes when it comes to diabetes?
I’ve lost a bit of weight over the last three or four months. Not intentionally, just because stuff has been happening and I forgot to eat. The truth is a lot more boring and not relevant to this blog at all, but the easiest way to explain it is that November last year was crazy-busy, stressful and little food was consumed. Whatever.
Apparently, it’s okay to comment on people when they’ve lost weight. And with it comes a lot of praise – as if it’s something of which I should be proud. But I know that the tough few months I’ve had is the reason I look this way, so when I stand in front of the mirror, I don’t see someone who looks good in what she’s wearing, I see someone who is looking tired and a little defeated.
It is another example of just looking at what is in front of us and not trying to work out what is going on behind the scenes.
My HbA1c is sitting in the low 7s at the moment which of course, would have every health professional alive patting me on the head and calling me a ‘good diabetic’. Well, thank you. But the reason for it is a combination of erratic highs and lows, and not eating much which does wonders for keeping a steady line on the CGM.
The truth behind results – whatever those results – can be more than a little deceptive. And being the person I am, I want people to know the truth. Well sort of. I want people to know that I haven’t been trying to lose weight out of vanity. It metaphorically has fallen off me because I’ve been stressed and busy and barely eating. So the numbers on the scales (if I bothered to weigh myself) wouldn’t be a reflection of effort at all. Equally, my A1c isn’t because of hard work; it’s because the limited food has helped, and the highs and lows have averaged out. I’d feel like a fraud if anyone thought anything else.
It’s all too easy to take what we see at face value and assume that what we see is what is real. But the two are completely different things. I’m never sure how much I should pry into what is really going on in others’ lives and I certainly don’t want a million questions thrown at me. Is a ‘you look good’ comment all that’s warranted when discussing weight loss? And should an in-target HbA1c be taken as an absolute that needs no further investigation? Honestly, I don’t think so.
The devil is in the detail, I guess. But making assumptions and not delving deeper will never get the truth. It will only tell half the story.
A self-awareness exercise I came across recently had me facing some interesting facts. The idea is to list things that you regret having done or not having done and then seeing how you could address each regret. And also, to think about why you did or didn’t do the thing you regret doing. Or not doing. (Okay, those last sentences made way more sense in my head that it does on paper, but hopefully you get the idea.)
The regrets have to be things over which you have some control. So saying ‘I regret I’m not taller’ doesn’t count. Unless you deliberately made yourself shorter by sleeping in a shoebox. Or something.
So, I sat down, got honest and wrote down the things that I do regret and here are some of them:
- I regret not having lived overseas
- I regret giving up playing the flute completely
- I regret not having another child
- I regret not buying those red shoes I saw at Bloomingdales the first time I went to New York City
- I regret waiting until I was 36 before visiting New York City for the first time
- I regret getting a perm when I was in secondary school. What was I thinking?
- I regret the times I ignored my instincts – they were always, but always spot on!
- I regret not being able to speak Italian. (But I will continue to say that all it would take is six months in Venice for me turn my high-school skills into fluent Italian. And I have the hand movements down perfectly!)
- I regret not telling my family that I love them more
- I regret wearing white jeans. Ever
- I regret not having seen Frank Sinatra sing live
- I regret spending my teens, twenties and now thinking I was (am) fat and trying to hide my body when it is perfectly fine
You get the idea. I then tried to do the same exercise, but based on how I feel about my diabetes. Did I have any real regrets? My list looks like this:
- I regret waiting three years before starting on a pump
- I regret not finding my endo from the beginning of my diagnosis
- I regret any and all of the guilt and shame I have felt about having diabetes
- I regret not speaking with someone about diabetes sooner and understanding that it’s okay to grieve
- I regret feeling the need to be stoic all the time and understand that sometimes it’s okay to say ‘this really sucks’.
I actually am quite proud of my diabetes list of regrets. So much of diabetes is out of our control. Whether we’re talking about our diagnosis or complications which we may or may not develop – sometimes despite our best (and worst) efforts – we sometimes still get dealt something that we hoped would not happen.
I guess for me, I don’t want to look back and say ‘I regret not having seen my ophthalmologist frequently’ or ‘I regret not having my kidney check done each year’, because if something happens, I don’t want to think that I could have prevented it.
Let me be clear. This is not a blame game. I know people who could make a list that would have no regrets at all because never did they miss a screening check, never did they see an HbA1c result above 7.0% and still have developed complications. I just want to be able to say I did everything I could to help. It’s as much control I can claim over this condition. A condition that really doesn’t understand what control is.
So, what are your diabetes regrets?
Oh VicRoads, are you trying to destroy me? Really?
With all that has been going on with the issues surrounding the new driving and diabetes guidelines; with all the inconvenience you are causing for people who are living with diabetes each and every day – all the hoops you are making us jump through; all the bureaucracy you have built in for us to simply hold a drivers’ licence, wouldn’t it be nice that just for once you could be a little – just a little – accommodating?
And yet, when I jump through each and every hoop and call you to ask you for an extension on getting my eye review form in I am told no. An extension will not be granted because my medical review form (different to the eye review form) was one day late.
I am unsure as to why I have to submit an eye medical review – I’ve never had to do that before. My eyes have been stable for years. This was clearly documented on my medical review form.
The woman I spoke with at VicRoads told me that if they did not receive my report on time, I would be issued a letter the following day telling me my licence was suspended. However, according to her, I have a two week grace period in which I can still drive. So why not simply give me an extra week so that I can get the form in on time? I have made an appointment to see my ophthalmologist, but of course, could not get a time until the day after the report is due. (He’s away at the moment as is half of Australia ‘cause it’s – you know – Summer holidays).
My driving record speaks for itself as does my diabetes record. I know more about how safe it is for me to get behind the wheel of a car than most people. I check my BGL, I make sure I travel with food in case I go low, I wear a CGMS that alarms not only if I am low, but if my BGL is dropping too quickly so I can prevent a hypo.
And never before have I been late with a review.
So – here’s some advice for everyone after the trials and tribulations I have dealt with in the last few months with Vic Roads:
- Regardless of when you have an appointment with your health professional to fill in your medical review form, call VicRoads the second you receive your letter requesting a review and tell them that you need an extension. There are dozens of reasons that this may actually occur – appointment is cancelled, doctor takes extra time to send the report, you don’t make it to the post office on time etc etc.
- If you do not get the report in by the due date, you will receive a letter from VicRoads warning you of the suspension which will take effect in two weeks. You cannot ask for an extension at this time; it’s too late. If you think you’ll need extra time, call BEFORE the due date of the original letter (usually 8 weeks from the date of the letter) and ask for the extension.
- Remember that it takes time for the medical review team to process your review. So even if you do get it in on time, there could be a delay in you getting the ‘all clear’. Obviously, this isn’t a problem if you get it in way before the due date, but if you’re just sneaking it in on time, it could result in your licence being suspended. I actually took my last review form into VicRoads and asked to speak with someone from the medical review team and pretty much demanded that they approve it that day.
- Off the top of your head, do you know the date your driver’s licence expires? No cheating – do you know? I had no idea and found out the hard way one morning when a police car pulled me over as I was driving to work. After they did a random number plate check and discovered my licence had expired I was fined $359. Great way to start the day! I had absolutely no idea my licence had expired and was 100 per cent certain I had not received a reminder letter from VicRoads (actually, being paranoid every time I get a letter from them, I was more than 100 per cent sure). I went straight down to VicRoads to renew my licence and asked if they had my correct details because I had not received a reminder about my licence. I was right – they had not issued a reminder because my licence had been suspended. Since November 2010. I nearly fainted. Long story short: apparently it was a clerical error with some smarty-pants at VicRoads indicating that I had not submitted my last review. Despite the fact that I had in my hand a letter saying it had been received and I was good to drive for two years before the next review. As I found out, reminders are not issued if your licence is suspended. (The fine was overturned, but it took a lot of time, letter writing, and sitting on the phone for this to happen!)
Having a licence is essential for many – most – of us, and whilst a pain, I completely understand why I need to have a medical review form filled in every couple of years.
But making things difficult for us only makes us angry at the process and the inconvenience of it all. Anecdotally, I’ve heard of people who simply don’t tell the licensing authorities about their diabetes to avoid the rigmarole involved in having a conditional licence. This is far more dangerous, in my opinion and puts these people at significant risk because of insurance and legal implications.
And this brings us back to the whole driving and diabetes issue and the development of the new guidelines. How is it possible for licensing authorities to have any idea of the actual process and how it impacts on people living with the condition if we are not consulted? Had Diabetes Australia been given a seat at the table when the new guidelines were being developed, this would have been considered. Had consumer reps been invited to take part, this would have been raised as a concern. It’s not good enough. Because this isn’t a simply list of guidelines on a page of a website. This is about our lives.
Obligatory photo of FIAT 500 that accompanies any driving posts. I may be a little obsessed. #dreamcar
Diabetogenic 