Category Archives: Living with t1D

Here’s Looking at You, Retinopathy Reminiscences

Through the window the last rays of sunlight are disappearing,  the waiter stops by  “Now you can see each other” he says, putting the flickering candle down between the glasses and the pate. There’s a momentary pause in our chatter, “You have no idea how true that is” Maryanne responds. I nod and toast my thanks to modern ophthalmology as I take a sip of wine.

Maryanne lives in Brisbane, I’m in Sydney and it’s been difficult to organise this catch-up drink. M is visiting Sydney for a conference, the weekend she arrived I was in Melbourne for my own conference so we’re meeting for an afterwork drink on Monday night. We skip lightly over the last 15 years, within a few minutes we’re talking about our eyes. Drawn to share again those dark experiences that nobody else really understands. Those years with impaired vision and the threat of blindness. We were young then, now we’re middle aged and feel as though that experience could have happened to someone else.  We talk about how that fear influenced the decisions we made and the lives we led back then though and how that’s impacted on where we are now.

Next we’re discussing whether or not we should undertake PhD studies and career changes. We know that if our eye problems had happened 20 years earlier we wouldn’t be sitting here, able to see each other, able to drive and contemplate more post-grad study. I feel more able to envisage the future now than I could as a younger diabetic, I worry about what things this disease can still throw at me but so far I’ve survived its best efforts.  If you happen to be deep in the trenches fighting retinopathy or some new complication, take heart, treatments these days are excellent and there is plenty of great life on the other side.

It’s now dark outside and the windows have turned into mirrors. I look up and see my reflection, I tell myself I’m doing okay for almost half a century of diabetes.

All things shall be well and all manner of things shall be well.” Juliana of Norwich

Language Matters & Compliance Officers

Melinda Seed writes for Twice Diabetes

In the midst of  the launch of the UK’s statement about language and diabetes (good to see them catching up with the pioneering work of Australia on this) I’ve been thinking about the sort of communication that I’ve found most helpful around diabetes.  Here are some of the things that have stuck in my mind as being really helpful over the years. Continue reading

My D Team: Me, Myself and I

The only player on the D mgt court!

The other day somebody innocently tweeted that diabetes management was a team effort.That got me thinking and although it’s dangerous to push metaphors too far I don’t believe thinking of diabetes management in terms of a team is appropriate or helpful.

The team analogy implies that everyone has a role to play at all times and most importantly that everyone shares the joys of victory or the bitterness of defeat. This is simply not true. It is me and me alone who feels the hypos, the highs, the fear and reality of complications.  Every finger prick, every needle, every blood test, dilated pupil exam or pump site change is felt by me alone. It is me who savours the ‘victory’ of a straight line on the Libre after eating pasta or the relief of a ‘clear’ complication screening.  The closest I come to sharing this is the empathy  in the diabetes community when rejoicing or commiserating with those of us who know exactly what it’s like. Continue reading

A New Pump on the Aussie Block: Ypsomed!

A new pump is available in Australia, right now. The Ypsomed (pronounced ipsomed) has been TGA approved and will be reimbursed by your health fund and the consumables are on the NDSS.  I was invited to attend a soft launch of the product and provided with a loan pump to ‘test-drive’. Ypsomed covered my travel and accommodation expenses to attend this event and lent me a pump to test drive. I have not been paid or expected to  write about or comment on this or any other product.

 

Size comparison, Ypsomed at top, my current pump below.
My current pump (on left) alongside the Ypsomed.

The first thing I noticed about the Ypsomed is its size. It’s small and lightweight. I REALLY like that it is much smaller and much less bulky than my current pump (which is only a few months old and yet is the biggest pump I have ever owned).

 

 

It has a large, touch screen. Despite being small, almost the entire front of the pump is the screen, so it’s easy to read and use.

The pump is made in Switzerland (which has a reputation for quality in manufacturing) but 24/7 support is local rather than using an international call centre.

I was surprised to learn that Ypsomed has a long history of involvement in diabetes devices. They were, in fact, behind the Disetronic pumps available in the 80s through to the early 2000s. The current pump has been available in Europe since 2016.

 

The pump has a glass cartridge, which appeals to me as I feel the insulin may be less likely to degrade in glass and hope that at least there will be a tiny bit less plastic diabetes waste around as a result. Here’s hoping that Novo start bringing the pre-filled cartridges into Australia (they are currently available in Europe).

It is water proof (although I haven’t tested this…yet) and takes a AAA alkaline battery (the pump won’t accept lithium batteries).

A downside at the moment is that the pump doesn’t ‘talk’ to any of the CGMs, so blood sugar readings would need to be entered into the MYLife app manually in order to calculate correction doses. Ypsomed staff assured us that they are in talks with most of the CGM and Flash manufacturers

I understand that the Ypsomed blood glucose meter talks directly to the app for bolus calcs etc.

I haven’t actually attached the Ypsomed pump yet-I plan to in the next day or two (no sense wasting the full insulin reservoir in my current pump.  I shall update this review about usability and button pushes and also the use of the app once I’ve worn it for a while.

For a couple of other early reviews check out:

Bionic Wookee

Diabetogenic

I am excited about a pump that is smaller AND the fact that more players are entering the insulin pump market. I was worried with the withdrawal of J&J that we might end up with only one pump in Australia.  I’m sure that every pump has its own pros and cons but if you are looking for a pump or an upgrade make sure you check out all available options. Some educators or endos tend to push the pump that they’re most familiar with, I’m all for choice-so make sure you see a sample of ALL the pumps in the Aussie market before you commit.

 

Diabetes Christmas Gift Guide, Just Don’t!

Imagine being gathered around the Christmas tree and and unwrapping  a startling visual reminder of diabetes complications. Well this is what some British diabetes organisation is suggesting people with diabetes might like to find in their Christmas stocking.

What about…No? Continue reading

Incredible Bulldust from Supposedly Credible Sources

Melinda Seed writes for Twice Diabetes

“Health Professionals should direct patients to credible online sources” this is the mantra of those wanting to continue to control the information people with health conditions can access.

Well, what is a credible site Diabetes NSW?  The IDF?

The National Health Service of the UK (NHS)? They run all health services in the UK and are government owned & controlled, surely they would be credible?

Here’s an offering from one part of the NHS posted on 17th November 2017.  It looks like an ad sponsored by Big Food. Imagine the outcry if Coca-Cola DID run an ad like this! This is misleading and just plain WRONG. Potatoes contain carbs but it is not simple sugar and the metabolic and nutritional impact is WAY different from that of Coke or orange juice (which looks surprisingly low in sugar in that pic to me).  This tweet-a picture of a display the diabetes nurses of the NHS took to a local shopping centre is so wrong, so potentially damaging and so misleading, I am beyond words.(Just kidding I can nearly always find the words to rant.)

Despite initially defending the tweet for quite some time, the West Suffolk NHS did delete it but I’m just leaving it here for the next time somebody starts dissing people with diabetes sharing health information on line.* Get your own houses in order first!

 

*West Suffolk NHS are by no means the only “credible” organisation disseminating misleading information. Health information is complex and doesn’t lend itself well to sound bytes and tweets. The sooner public health promotion officers realise this the better.

In the interests of balance, here is a useful infographic produced by people with diabetes. Note it doesn’t promote branded products, includes quantities and is relevant to the season at hand-Thanksgiving and Christmas are particularly times when you eat foods out of the ordinary, so a quick guide to carbs is helpful.  Kudos to the people at Beyond Type 1.

 

If Healthcare Really Were Patient-Centric

Melinda Seed writes for Twice Diabetes

Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care?  It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.

Here are some ideas I had: Continue reading

Beyond Normalising Mental Healthcare in Diabetes

The psychosocial aspect of diabetes is a bit like the weather everyone’s always talking, but nobody does a thing about it. Such was my view preceding DX2 Melbourne where I was one of a cast of thousands participating in a webcast about mental health and diabetes.

The consensus view (I think it was unanimous) was that psychosocial care should be normalised as part of diabetes healthcare. I agree 100% with this. I recommend Renza’s post at Diabetogenic about the webinar and particularly the importance of ending the stigma around mental health.  Frank of Type 1 Writes was also on the panel and has written insightfully about this topic too.  The focus of the panel discussion was on seeking help at times of distress but I’d like to take things one step further than this and talk about

Prevention!

It is my contention that not only does standard diabetes care fail to heed prevention strategies for psychosocial distress but it actually causes or exacerbates mental health issues in people with t1 diabetes. Continue reading

Don’t Be Just another Brick In the Diabetes Wall

Melinda Seed writes for Twice Diabetes

Healthcare is a highly structured environment and everyone has their assigned rights and responsibilities that belong to those roles.  Those within the system are highly motivated to maintain the status quo to keep the forces of chaos subdued.

Diabetes, particularly type 1 is troublesome to the health status quo. For starters none of us can ever be the ideal patient. We can’t be healed in the “you’re good as new” kind of way and the professionals have to hand over their traditional roles to us. We are the ones doing the injections, the blood testing and keeping track of our health.  It is little wonder that many professionals view diabetics as troublesome patients.

As if this isn’t bad enough, many of us with diabetes (and other health conditions of course) choose to speak to each other and publicly about living with diabetes and we’ve been able to do so very effectively via social media.  This sort of activity is threatening to the system and the gatekeepers want to fight or control it. Continue reading