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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.
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.
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!
Last night my husband and I were out to dinner when he said “Let’s play a game. It will test our Beatles knowledge. We need to come up with a Beatles song for every letter of the alphabet.”
Really, he’s just a show-off smarty-pants and knew that there was no way that I could out-play him when it comes to the Beatles – Blue Jay Way? Really? Who even knows that’s a Beatles song?
So today, I thought I’d play a diabetes alphabet game. We had our end of year team lunch, so I had a group of incredibly bright women to help out. The way it worked was I said the letter and whoever came up with the first thing beginning with that letter won (with a few edits from me). Here we go:
A – ‘All the time’!
B – BGLs (close second to ‘Bugger’ with thanks to Kim)
C – Complications (and constant.)
D – Diabetes
E – Eyesight
F – Fuck! (Snap! Kim and I said it at exactly the same time!)
G – Glucose
H – Hypo / High (it was a tie. Special mention to Jane’s ‘HI’ from friendly meters when we’re reeeeaaaallllly high)
I – Insulin
J – Jelly beans
K – Ketones
L – Lucozade (Kim again!)
M – Mellitus (followed by a discussion on how it’s pronounced. Is it Mel-it-us or Mel-eye-tus??)
N – Normal (given that at the time of doing this there were more pancreatically-challenged people involved, we decided that our ‘normal’ is those with type 1 diabetes!)
O – Ophthalmologist
P – Pee stick (with pump as the runner-up)
Q – Quick-acting
R – Retinopathy
S – Slow-acting
T – Tablets
U – Undiagnosed
V – Veins
W – Wonderful people (with a shout out to the DOC)
X – X-tra sexy (with a shout out to the DOC)
Y – You’re in control!
Z – Zzzzzzzz (‘cause it’s boring. And I really want a good night’s sleep uninterrupted by either high or low sugars as has been the case every night this week.)
I suspect that everytime the game is played, the words would change. (Case in point: how was C not cupcakes? I’m shattered!) But it was a fun way to spend 15 minutes. I wonder if our ‘diabetes state of mind’ could be analysed by the words we come up when playing this game. I know that on those days where diabetes is misbehaving, most words would be negative. But when diabetes (very) occasionally plays nice, perhaps cupcakes would be the first thing we think of when the letter C is called.
And hey – next time Aaron suggests we play the Beatles alphabet game, I’ve got A sorted. I’m calling Ain’t She Sweet.
Okay – it’s over to you now. What words would you come up with?
Today at Diabetogenic Paul Buchanan is guest blogging for me. A couple of months ago, Paul asked me to guest blog for him. You can read that here. Paul has lived with type 1 diabetes since January this year and because he’s not the type of guy to sit back and wait for things to happen, he set up the #GBDOC Twitter and Facebook pages and a website, too. A couple of months ago, Paul asked me to guest blog for him. You canead that here. I was lucky to meet Paul at the EASD European Bloggers Summit earlier this month. There were lots of girly squeals (both of us) when we met. Take it away, Paul!
Ok, so I was diagnosed in January 2012 with T1 at the age of 44 – a bit of a shocker – but then it would have been a shock at any age. And another thing, I’m a grown up! I’ve had to deal with some pretty serious things in my life so far, work, travel, relationships – I’ve got a few scars, I’ve been around the block a few times, so dealing with ‘the D’ shouldn’t be too tough, right?
I mean, I really am a lucky guy, ‘cos almost immediately I found the #doc (the Diabetes Online Community) and wow – talk about support! There isn’t a question I can’t ask, there isn’t an issue I can invent, there isn’t a problem that exists that the #doc hasn’t got an answer for. When I say “an answer” I really mean a thousand voices all crying out with advice and love and empathy!
And another thing, talk about technology! 2012 and I’m on these tiny weeny little 4mm 32 guage needles that mostly I can’t even feel going in (there is the odd ‘screamer’n’bleeder’!), I’m queuing up for a pump and will get CGM just as soon as those tight-fisted buggers at the NHS realise how much of a difference it makes in quality of life and start to fund them properly over here.
I’ve got mobile apps that help me track, well, everything really! I can email and text my Nurse Consultant (she is a goddess amongst HCPs). I’m back in training having now done my first triathlon, I’m signed up to do a 70.3 ‘half’ Ironman in 2013 and life is good!
So, yeah, bloody lucky!
Being a ‘grown up’ with a few years under my belt I don’t give a stuff if other people are offended by me testing or injecting in public, in a restaurant or in the shops! I have no issues with telling people or answering questions, probably ‘cos it gives me chance to show off how much I’ve had to learn in the last six months, and I have never had to be a child with D. I have never had to feel different, never had to be treated differently, never had to worry about ‘being just like everyone else’. To all of you who were diagnosed as children, I salute you. That you not only ‘survived’, but that you are all now a part of the #doc and so willing to help others is a testament to one of the demonstrable upsides of living with a chronic condition – you are all better people than nearly everyone I have ever met, and I am proud to be a part of the family.
Lots of Love
@T1HbA1c
Thanks, Paul! You can read more from Paul at his blog here. The #GBDOC Twitter chats take place on Thursdays at 7.00am AEDT. You should sit in – they’re a very amusing bunch!
The app mentioned above in Paul’s post is MySugr. I had a look at it when I was at the European Bloggers Summit and can’t wait for it to be launched here. It’s great to see a diabetes data tracking app that has been developed by folks who ‘get-it’. I’ll let you know once it’s available in Australia.
Diabetogenic 