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A new hipster cafe recently opened in our neighbourhood. We knew it has serious hipster credentials before we even walked in because it is housed in a warehouse which was once a printer, and it’s hidden away without any obvious signage.

Recycled plastic and coffee husk coffee cup.

When we stepped inside, we found the staff had appropriately ironic facial hair and tattoos. They were all cool and friendly. I felt old and decidedly uncool, but nonetheless, found a table down the back and sat down.

The menu was full of fermented goodies, organic kale, and a million varieties of kombucha. There is no smashed avocado on the menu here. Oh no, that’s too common. You want something smashed on your organic, ancient grain toast? They offer post-hipster smashed edamame.

Organic, fair trade coffee is served in cups made from recycled plastic and coffee husks. Because: of course.

And there is an indoor herb garden on the mezzanine.

This is exactly the sort of place that someone could brunch at, and then confidently fill in one of those newspaper ‘what I ate today’ surveys. And it would look like this one I prepared earlier (back in 2015).

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Every Sunday, in the Life magazine of The Age newspaper, is a column where people (usually B to Z grade celebrities) are asked about what they eat on a given day.

They all seem to follow the same boring, unadventurous, ‘this-is-what-a-dietitian-wants-to-hear’ diet. Usually, they start their day with lemon water (to help kick start their metabolism or help with their bodies pH or boost their antioxidant intake or cleanse their liver – it depends which pseudo-science crap they have been reading up on that week), which I am reliably informed (by, you know, qualified practitioners) does nothing other than potentially erode tooth enamel.

Mostly, the foods consumed by those lying about reporting what they ate include a lot of kale, brown rice, kale, grilled salmon, kale, green tea, kale, organic vegies, and kale. Because, kale.

It was in such an article that I first heard of Pete Evans with his ridiculous claims of activating his nuts.

The dietitian – the very sensible and very lovely Dr Joanna MacMillan – then usually comments that even though the person had lied reported eating well, they should try to incorporate more grains/leafy green vegies/lean meat/low fat dairy etc. in their diet to ensure they are following evidence-based dietary guidelines. There is (thankfully) often a ‘stop believing the crap you are reading’ message in there – and a reminder to stop eroding their tooth enamel first thing in the morning.

So, I thought I would write down everything I consumed on a recent day. And then translate it into the language used in these articles.

Breakfast

Caffe latte

Single origin organic coffee grown by virgins on an Ethiopian hillside, reverse-osmosis filtered organic water, organic milk from cows grazing on organic kale while piped music is played to them, fair-trade, organic, raw sugar grown under the organic sun and picked by night under an organic full moon. 

Avocado toast

Two slices of artisan organic sourdough bread, evenly toasted by hand with a blow torch using organic butane, spread with organic avocado picked that morning, speckled with organic black sea salt from the organic Black sea.

Lunch

750ml pineapple juice (I had just mowed the lawn and was hypo. Really hypo.)

Pure filtered organic pineapple nectar, extracted by hand from an organic pineapple, naturally sweetened by smiling pineapple nectar extractor pixies. 

Afternoon tea

Caffe latte

As above, but this time sweetened with organic agave syrup from Mexico.

Dinner

Homemade pasties.

Ratatouille of organically-grown baby vegetables including organic peas, organic potatoes, organic green beans, organic corn, organic onion, organic celery, organic spinach, organic zucchini, organic eggplant, organic garlic, organic turnip with organic micro-herbs wrapped in organic butter-pastry, gently baked until organically golden brown.  

Salad of avocado, spinach leaves, sesame seeds and dressing

Avocado as above, organic baby spinach leaves picked just before becoming teenage spinach leaves, sprinkled with organic sesame seeds drizzled with a dressing of organic EVOO and organic balsamic vinegar. 

Dessert

Three gluten free chocolate chip cookies (gluten free because the only flour-like product in my house at the time I had a sudden urge to bake was almond meal. Strictly NOT for any health benefits.)

Trio of gluten-removed organic dark chocolate shard biscotti made with gluten-free organic almonds, crushed by hand, baked into organic orbs of goodness.

Basically, my diet that day involved a couple of coffees, three quarters of a litre of pineapple juice, two slices of bread with avocado, a couple of pasties and three chocolate chip cookies. Not great at all. But honest.

And it was a good day, a healthy day. Because with everything I ate, I bolused insulin for it (not the pineapple juice – that hypo was terrible!). I ate what I chose to eat and then did what I needed to do to manage my diabetes. I took insulin. Or rather, sub-cutaneously infused organic insulin made by the delicate hands of Celtic insulin faeries.    

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I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)

Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.

But! Here are the ones I was able to decipher. Buckle up…it’s a long one. 

Ask patients? That’s novel

Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.

I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.

More here.

Research and people with health conditions

What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way. 

And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.

Thanks for listening

It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.

Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!

The driver’s seat

This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.

More here.

Complications and language

The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.

The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)

You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.

Wellness is not the same as medicine

My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.

I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.

Diabetes Voice reboot

The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.

Well, that’s candid…

This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!

(Click for source)

Right device, right person, right time

Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.

More here.

What are the barriers to preconception care ?

This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)

‘If only there was a….online community for people with diabetes’

That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.

The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.

HypoRESOLVE on Diabetes mine

I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.

On a break

I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.

I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.

In the meantime, be well and be kind to yourself.

Yesterday an article was published across Australia detailing a new report showing that Australians with diabetes are missing out on the recommended levels of diabetes care. Most of these people receive their diabetes care in general practise.

A couple of things before I go on:

  1. The article was behind a paywall, but Diabetes Australia shared an image of a portion of the it, and that can be accessed here. If you have access to a News Ltd. account, you can read the article here.)
  2. I want to say that in writing this post today I do not want to be seen to be doctor-bashing. I don’t believe that is constructive in any way whatsoever. However, I do think that there needs to be acknowledgement that the level of diabetes care in general practise is not ideal for a lot of people.
  3. The language of the article was atrocious. It appeared first under the heading ‘How diabetes sufferers are dicing with death’ Seriously, journos, ready the freaking Diabetes Australia Language Position Statement.

Onwards…

There was some discussion online after the article was shared, with a few doctors believing the article wasn’t all that helpful and feeling that it was unfairly unfavourable towards GPs. Someone also commented on the language used. (I’m not sure if they meant on Twitter or in the article. The language in the article was strong and very critical of GPs.)

The report is damning, and it shows that the results for people with diabetes are not good at all with only one in three people diagnosed with diabetes receiving expected standards of diabetes care. Only half had their A1c checked, and of those, only half again were in range.

This is despite there being a documented diabetes annual cycle of care (for which GPs receive funding). If completed fully, the annual cycle of care includes: annual A1c, cholesterol, and kidney checks, weight and blood pressure checks, as well as two-yearly eye and foot checks.

For me, it shows yet again how stacked the decks are against so many people with diabetes. We don’t receive the level of care recommended and then, when we don’t meet expected outcomes, or develop diabetes-related complications, we get blamed.

If we want to talk about things that are unhelpful and not constructive, let’s begin with that.

We seem to forget that most people don’t innately know what is required to manage diabetes, or what screening checks are required – especially people newly diagnosed with the condition. A lot of people rely on their healthcare professional – in the case of diabetes, usually their GP – for this.

I’ve written before that in my case, my GP is not in any way involved in my diabetes care. This is a deliberate decision on my part. I understand it is also a privileged decision – I have easy access to my endocrinologist, and other diabetes specialists for all my diabetes healthcare needs.

But that’s not the case for everyone, and a lot of people are reliant on their GP for all their diabetes clinical care.

People with diabetes are being let down.

Even though pointing fingers and appropriating blame is not necessarily helpful, it’s what we seem to do. We can blame the system. We can blame a lack of funding. We can blame a lack of continuity of care. We can blame the fact that there are no coordinated screening programs. We can blame the need for more specialist care. We can blame a lousy and ineffective electronic records system.

But what we can’t do is blame people with diabetes. No one asks to get diabetes. No one asks to get diabetes-related complications. So how is it possible that in a system that is letting us down, we are the ones blamed when it happens?

Also, this week, we have heard story after story of missed type 1 diabetes diagnoses with people reporting that despite seeing their GP (often repeatedly) about their symptoms, they were not checked for type 1 diabetes.

It is undeniable that some GPs simply do not know enough about diabetes to diagnose it in the first place, and then to treat it in an ongoing and effective way, and this is leading to those of us living with it not receiving an adequate level of care to live as well as possible with diabetes.

While there may be some hard truths in the report, hopefully the result will be better care for people with diabetes. Because, surely, that is all that matters.

As National Diabetes Week activities began, I kept a close eye on the Twittersphere to see just how the week was being received. Pleasingly, there were a lot of mentions of the #ItsAboutTime campaign, and I set about retweeting and sharing activities by others involved in the week. 

One tweet, from Edwin Pascoe, caught my attention:

Edwin Pascoe is a registered nurse and credentialled diabetes educator in Victoria.  He is currently undertaking a qualitative study as part of a PhD at Victoria University into the lives of gay men and type 2 diabetes in the Australian context.  Data is collected but analysis is underway.

I read Edwin’s tweet a few times and realised that he is absolutely right. I can’t think of ever seeing anything to do with any diabetes campaign that addresses the specific issues faced by LGBTI people with diabetes. So, I reached out to Edwin and asked if he would like to write something for Diabetogenic. I’m so pleased he did. 

One of the criticisms of diabetes representation in the media is that it lacks diversity. I completely agree with that sentiment. Because while we certainly may share stories, we also need more voices and more perspectives, and come to understand that there are different, unique and varied experiences and issues faced by different groups. 

I’m thrilled to feature Edwin’s post today, and am so grateful that he took the time to write it. 

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CDE, Edwin Pascoe

Diabetes is a chronic condition that is managed in the context of people’s lives and this fact has been increasingly recognised by peak bodies in diabetes within Australia such as Diabetes Australia, Australian Diabetes Society, Endocrinology Society of Australia and The Australian Diabetes Educators Association.

Diabetes education has therefore become not just about defining diabetes and treatment for people but exploring how people with diabetes manage these things in context.  Creating the freedom and space for people to speak their truth will allow health practitioners to explore appropriate solutions that are congruent with the person with diabetes needs.

The following will cover some of this context and how sexual orientation may influence diabetes.

Context is everything

The context of lesbian, gay, bisexual, transgender and intersex (LGBTI) persons has not been recognised formally by these same peak bodies in diabetes specifically.  Arguments shared informally have suggested that what people do in bed does not affect diabetes and considering we have full equality under the law why would it matter. Further to this health care professionals (HCPs) have suggested none of this worries them as all people are treated the same, but herein lies the problem as:

  1. Not all people are the same.
  2. LGBTI people are still not fully recognised under the law in Australia despite the recent success in Marriage Equality. For example religious health care services and schools are permitted under law to fire or expel anyone that does not follow their doctrines.  In some states gay conversion (reparative therapy) is still legal despite the practice having been shown to cause significant psychological harm.  It is also important to note that it was only quite recently that the last state Tasmania decriminalised homosexuality in 1997 so this is in living memory.
  3. The law is not the only determinant of social acceptability but is entrenched in culture (we know this from numerous surveys that have seen the up to 30% believe that homosexuality as immoral (Roy Morgan Research Ltd, 2016)). Law changes have only meant that in part hostilities have gone underground.
  4. The focus on sex or what people do in bed fails to see people as whole and often lead to false claims of promiscuity in LGBTI people. There are also assumptions in relation to what people do in bed for example anal sex is one of these stigmatised practices.  In reality not all gay men practice this and a significant percentage of heterosexual people do engage in anal sex.

Reports from the Centre for Disease Control and Prevention in the USA identified that 44% heterosexual men and 36% of heterosexual women have engaged in anal sex (Chandra, 2011).  Mild displays of affection such as holding hands and leaning into each other engaged routinely by heterosexual couples are heavily criticized when observed in same sex attracted people causing LGBTI people to self-monitor their behaviour.  If they choose to engage in this behaviour it is often considered and calculated rather than conducted freely.

The result of this is that there is a lot of awkwardness around the topic of sexual orientation for both the HCP and LGBTI person, something not talked about in polite company.  This means that rather than talking about their health condition in context there is tendency to talk in general terms if they are recognised as LGBTI, or they are assumed heterosexual until the person outs themselves during the consultation.

However outing oneself can be an extremely stressful experience as, despite good intentions by HPCs, LGBTI people may still be fearful and remain silent to the point of even creating a false context (a white lie to keep themselves safe).  It has been a known practice among some LGBTI people that some engage in the practice of ‘straightening up’ the house if they know HPCs or biological family members are coming to their homes, to again keep themselves safe.  This is not to say that all situations are this bleak but that for some at least it is.  Does this prevent people from seeking help in the first place when required?

Studies on rates

In the USA Nurses’ Health Study, it was noted that the rates of diabetes in lesbian and bisexual women was 27% higher (Corliss et al., 2018).  Anderson et al. (2015)examined electronic records for 9,948 people from hospitals, clinics and doctors’ offices in all 50 states (USA).  Data collected included vital signs, prescription medications and reported ailments, categorised according to the International Classification of Diseases diagnostic codes (ICDs). They found that having any diagnosis of sexual and gender identity disorders increased the risk for type 2 diabetes by roughly 130 percent which carried the same risk as hypertension.  Wallace, Cochran, Durazo, and Ford (2011), Beach, Elasy, and Gonzales (2018)also looked at sexual orientation in the USA and found similar results.

However one must consider the country in which this data was collected as acceptability of diverse sexualities and differences in health care systems do make a difference. In a study within Britain the risk for type 2 diabetes was found to be lower than the national level (Guasp, 2013).  In Australia the rates of diabetes in a national survey came out as 3.9% in gay men in 2011 (Leonard et al., 2012)and this was the same as data collected by Australian Bureau of Statistics (2013)for that year (they did not differentiate between types).

Life style factors

Life style factors such as exercise and food consumption are important to consider as these are tools used to manage diabetes.  Studies have found significant level of homophobia in Australian sport that prevents participation(Erik Denison, 2015; Gough, 2007)and that there are elevated levels of eating disorders including binge eating disorder in LGBTI people (Cohn, Murray, Walen, & Wooldridge, 2016; Feldman & Meyer, 2007).

Qualitatively, a study was conducted in the UK/USA by Jowett, Peel, and Shaw (2012)exploring sex and diabetes, and in this study one theme noted was that equipment such as an insulin pumps put participants in a position to have to explain and the fear they were being accused of having HIV.

Stories

The following two stories may help give context to how sexual orientation has influenced these two people’s lives.

The first story is regarding a gentleman who came to see me for diabetes education for the first time who had lived the majority of his life hiding his sexual orientation due to it being illegal.  During the consultation I was trying to explore ways to increase his activity levels in order to improve blood glucose levels, strength and mental health.  He advised he didn’t like going for walks even if it was during the day in a built-up area as it was dangerous.  When asked to explain this he said he feared being attacked due to his sexuality as he felt he looked obviously gay, but I didn’t see that.

A second story later on was from an elderly lesbian woman who was showing me her blood glucose levels.  I noted her levels were higher on Mother’s Day, so I obviously asked what was going on there. She bought out a picture of her granddaughter from her purse which immediately bought a tear to her eye. She said her daughter had a problem with her sexual orientation and so stopped her from seeing her granddaughter, and that it had been two years since she had seen her.

It’s only the start

It is important to note that each letter of the LGBTI acronym has their own unique issues with regard to diabetes.  I have mainly talked about gay men here as this is what my study covers but there are studies on transgender people (P. Kapsner, 2017), increased rates of diabetes in people with HIV (Hove-Skovsgaard et al., 2017)and of course many others.  In Australia we don’t routinely record sexual orientation, only in areas of mental health and sexually transmitted diseases, and as such data is lacking in this area. It’s time to be counted and there is a need to learn new ways to improve engagement for LGBTI people with diabetes.

References

Anderson, A. E., Kerr, W. T., Thames, A., Li, T., Xiao, J., & Cohen, M. S. (2015). Electronic health record phenotyping improves detection and screening of type 2 diabetes in the general United States population: A cross-sectional, unselected, retrospective study.

Australian Bureau of Statistics. (2013). Australian Health Survey: Updated Results, 2011-12. from http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4338.0~2011-13~Main%20Features~Diabetes~10004

Beach, L. B., Elasy, T. A., & Gonzales, G. (2018). Prevalence of Self-Reported Diabetes by Sexual Orientation: Results from the 2014 Behavioral Risk Factor Surveillance System. LGBT Health, 5(2), 121-130. doi: 10.1089/lgbt.2017.0091

Chandra, A. (2011). Sexual behavior, sexual attraction, and sexual identity in the United States [electronic resource] : data from the 2006-2008 National Survey of Family Growth / by Anjani Chandra … [et al.]: [Hyattsville, Md.] : U.S. Dept. of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, [2011].

Cohn, L., Murray, S. B., Walen, A., & Wooldridge, T. (2016). Including the excluded: Males and gender minorities in eating disorder prevention. Eating Disorders, 24(1), 114-120. doi: 10.1080/10640266.2015.1118958

Corliss, H., VanKim, N., Jun, H., Austin, S., Hong, B., Wang, M., & Hu, F. (2018). Risk of Type 2 Diabetes Among Lesbian, Bisexual, and Heterosexual Women: Findings From the Nurses’ Health Study II. Diabetes care, 41(7). doi: https://doi.org/10.2337/dc17-2656

Erik Denison, A. K. (2015). Out on the fields.

Feldman, M. B., & Meyer, I. H. (2007). Eating disorders in diverse lesbian, gay, and bisexual populations. International Journal of Eating Disorders, 40(3), 218-226. doi: 10.1002/eat.20360

Gough, B. (2007). Coming Out in the Heterosexist World of Sport: A Qualitative Analysis of Web Postings by Gay Athletes. Journal of Gay & Lesbian Psychotherapy, 11(1/2), 153.

Guasp, A. (2013). 2013Gay and Bisexual Men’s Health Survey.   Retrieved 09/07/2018, 2018, from https://www.stonewall.org.uk/sites/default/files/Gay_and_Bisexual_Men_s_Health_Survey__2013_.pdf

Hove-Skovsgaard, M., Gaardbo, J. C., Kolte, L., Winding, K., Seljeflot, I., Svardal, A., . . . Nielsen, S. D. (2017). HIV-infected persons with type 2 diabetes show evidence of endothelial dysfunction and increased inflammation. BMC Infectious Diseases, 17(1), 234-234. doi: 10.1186/s12879-017-2334-8

Jowett, A., Peel, E., & Shaw, R. L. (2012). Sex and diabetes: A thematic analysis of gay and bisexual men’s accounts. Journal of Health Psychology, 17(3), 409-418. doi: 10.1177/1359105311412838

Leonard, W., Pitts, M., Mitchell, A., Lyons, A., Smith, A., Patel, S., . . . Barrett, A. (2012). Private Lives 2: The second national survey of the health and wellbeing of gay, lesbian, bisexual and transgender (GLBT) Australians.

  1. Kapsner, S. B., J. Conklin, N. Sharon, L. Colip; . (2017). Care of transgender patients with diabetes. Paper presented at the European Association for the Study of Diabetes, Lisbon Portugal http://www.abstractsonline.com/pp8/#!/4294/presentation/4612

Roy Morgan Research Ltd. (2016). “Homosexuality is immoral,” say almost 3 in 10 Coalition voters [Press release]

Wallace, S. P., Cochran, S. D., Durazo, E. M., & Ford, C. L. (2011). The Health of Aging Lesbian, Gay and Bisexual Adults in California. Policy brief (UCLA Center for Health Policy Research)(0), 1-8.

A couple of years ago, I clumsily wrote a post about how there is simply not enough information available about women, diabetes and sex. That post remains one of the most read posts on this blog. Within half an hour of pressing the publish button, over two dozen women I don’t know reached out to me to say it was the first time they had ever read anything about the issue, and that their concerns and questions have never been addressed…mostly because they didn’t know how to ask them.

A week or so ago, the topic came up again thanks to a new survey that is being conducted out of the UK, headed up by health psychologist Kath Barnard. The introduction to the survey highlights that sexual health issues for women with diabetes are a neglected are of study, acknowledging they have an impact on wellbeing, self-image and relationships.

Here is what I wish I was told about sex and diabetes when I was diagnosed – or at least could easily find information about somewhere.

  • Diabetes can affect how you feel about sex. (Seriously, being diagnosed as a 24 year old, this should have been a headline.)
  • And it can affect sexual function in women. I really wish I had known this, because it was not mentioned when I was diagnosed (or for a long time after). Sex was different after diabetes, but because no one told me that it could be, or what might happen, I thought that this was just me. And because I thought it was just me, I didn’t speak to anyone about it. I guess because I was embarrassed and ashamed.
  • Yes, sex is exercise and can result in hypos. But it’s not just lows that affect sex. (This was literally all I was told at diagnosis about the impact of diabetes on sex: ‘You might have a hypo after or during sex, so eat a sandwich beforehand.’ And all I could think about in that moment was trying to work out how to incorporate a sandwich in foreplay. (Please do not send suggestions.)
  • High glucose levels are not good for libido. Sitting with glucose levels in the high teens and twenties does not put me ‘in the mood.’ It makes me feel tired, grumpy, frustrated and stressed. All of these feelings are conducive to diminishing sex drive.
  • And rollercoaster glucose levels don’t help either.
  • While I was warned that sex can cause hypos, I wasn’t equipped with how to deal with that. ‘Sorry, honey – I need…well, I need some honey, because I think I’m about to pass out,’ is a mood killer. For everyone involved. I learnt that very early on.
  • I wish I had been told how to speak about my concerns about sex – with HCPs and especially with Aaron. I felt like my body was failing at everything and that made me feel decidedly unsexy. But by not having the words or ideas of how to speak about it, I simply didn’t. (And again, I wouldn’t have had any solutions even if I did speak about it, so what would have been the point.)
  • The body image issues I had been living with for some time became amplified once I had diabetes. Suddenly not only could I see all these faults with my body, but now it was also broken from the inside. I felt unattractive, I didn’t want to have my body on show because to me it felt inadequate. It would have been good to have someone suggest I speak to a psychologist and work through this sort of shit!
  • Here are some ideas that might work if lubrication becomes an issue, because it might.’ That would have been a mighty useful comment to have received, instead of feeling like my body was slowly, but surely, shutting down all functions that I had, until that point, taken for granted.
  • Here’s an idea: often, at diabetes events, we receive bags chock full of goodies: Foot cream, alcohol swabs, glucose tabs, cardboard-tasting muesli bars, recipe books. Throw a tube of lube in there too, event organisers! At least this will get people thinking, realising that if this is an issue for them, they’re not the only ones, and probably start some conversation.
  • I wish HCPs understood that this may be a really difficult and awkward conversation for some people, and many women with diabetes won’t feel comfortable raising the issue. So please take the lead here and ask questions – even: ‘Have you noticed any difference in how you feel about sex?’ Do it gently…
  • Desire and arousal are not the same thing. Wanting to have sex, but knowing that it may be painful, difficult or just plain not the same as before, plays with your mind. I wish that had been explained to me, because arousal issues actually meant desire was affected.

I think that had I been better informed about all of these factors, or at least told that sex was something that diabetes could (or would most likely) affect, I would have been better equipped. It took me a while to muddle through it all myself.

I know that talking about sex – in and out of a diabetes context – is not always easy. But just because something is difficult doesn’t mean that it should be swept under the carpet and ignored.

Unsurprisingly, it was speaking with other women and learning that they had the same issues, questions and concerns that led me to seeking clinical and psychological help to work through everything. I feel like I got there in the end, but it took a lot longer that it needed to. Because I honestly thought that I was the only one dealing with it all. However – as is so often the case with diabetes – our concerns and stories are already someone else’s, and there are answers to be found if we know where to go to looking. I just wish that instead of having to search, they had been given to me at the beginning.

Please consider filling in the Female Sexual Health and Diabetes survey here. It only takes about ten minutes.

I caught up with Grumps a couple of weeks ago in London and bored/annoyed him to death with requests for him to write for me again. Success! Off you go, Grumps… 

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A couple of weeks ago I was lucky. Lucky that my great friend Renza was in the UK. Lucky that we had time to catch-up. Lucky that JDRF UK invited us both to talk with their staff about #LanguageMatters & #TalkAboutComplications.

Smiley / Grumpy

One of the questions during the session was around how can we get the language matters message out to healthcare professional?

Renza gave her view. I can guarantee that it was brilliant and articulate. But if I’m totally honest, (which I can be now, with her back on the other side of the world again), I wasn’t totally listening.

I’m shit at multi-tasking you see. In fact, I struggle with single tasking most days.

You see I was thinking (another thing I struggle with….)

It’s easy (relatively) to get the message out to my diabetes team:

  • Discussions
  • Position statements.
  • Frowns and a raised eyebrow at the required time.

But what about my extended team?….. How would I do this?

What Would Grumpy Do?

Basically, I did what I often do, (which pisses people off).

I answered with a question.

  • ‘Who is in my HCP team?’
  • ‘How many HCPs are in it?
  • ‘Do I see the same HCP every time?’

Ok. That’s three questions. (I’m also shit at maths.)

I’d kind of inadvertently got a head start on this one because at the beginning of my foot ulcer treatment (fucking ages ago), I considered how joined up my care would be.

Don’t get me wrong. Each team is fantastic and the care is brilliant. It’s not joined up, though.

My brain works, (when it actually works), in pictures. So, I mapped this out:

Grumps’ brain drew this.

There are a lot of HCPs involved here, in several locations and different fields of expertise. The only person present at every single appointment and meeting is me.

So, I am the one best placed to ensure that my care is joined up. In which case, I am best placed to ensure that I am talked to in a consistent way, using the language that I am personally comfortable with.

I’m not saying that its easy. I am saying that it’s my responsibility to try.

The best manager I ever had used to tell me: ‘What you permit, you promote’. If you let people treat you in a way that you do not like, it validates it to them.

Live Long and Bolus!

Grumps.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

I woke yesterday morning to a shit storm on Twitter. I had dozens and dozens of notifications where I had either been retweeted, mentioned or @-ed. (And yes, sorry, I did just turn the @ symbol into a verb). I was hoping that someone was sharing news with me that in the eight hours I’d been asleep, diabetes had been cured, JK Rowling had released a new Harry Potter book, or Nutella would be sponsoring me to…well, eat Nutella.

Alas…it was none of these. No; it was not.

I slipped down the rabbit hole of people replying to a tweet where I’d shared an awesome blog post by my mate and all ‘round wonderful human, Georgie Peters. Georgie was commenting on the recent study which has been widely shared (and written up in the NY Times) about type 1 diabetes and LC diets. (If you’ve not read the NY Times article, do! The study is really interesting and as someone who predominantly follows LC it all makes perfect sense to me…and makes my CGM trace devoid of roller coasters lines.)

Georgie’s piece was not demonising LC. In fact, quite the opposite. She was suggesting that it is absolutely a valid way of eating for some people, just as eating moderate to high carbs might be.

Distilled into one word, Georgie’s post was about CHOICE.

In more than one word, Georgie was warning that diets that are inherently restrictive in nature could lead to an increased risk in eating disorders. Georgie was specifically referring to children on LC diets who are not given a choice in the way they are eating, or as she far more eloquently puts it: …the food choices of children and their right to bodily autonomy.’

Choice. It all comes down to choice.

Apparently, that was completely lost on the people challenging what Georgie was saying. One person was somehow trying to say that the idea that a diet restricting carbs was no different to a kosher diet, and does that mean that people following a kosher way of eating have an increased rate of eating disorders? (If you can join the dots to make something that even remotely makes sense, please do so for me, because I have tried and keep coming up with a massive question mark.)

Another doctor claimed that she insists all her surgical patients go on a low carb diet (pre-surgery), and that they have no choice in the matter. Two things: type 1 diabetes isn’t the same as prepping for surgery. And any doctor who even suggestedthere being no choice in anyaspect of my diabetes management would be given the sack very quickly. (I’ve no idea about pre-surgery diets, because that’s not my thing. Diabetes is. Georgie’s post was about diabetes, not about pre-surgery diets. The surgeon’s comments added to my confusion, because: apples and oranges…which are probably banned on her LC diet. And further down the rabbit hole we go.)

The food we eat; the diet we follow, are inherently personal choices. No one has the right to insist that there is only one way of eating. One of the frustrations that some of us who do want to follow a LC diet have is that there are some HCPs who refuse to even acknowledge that it could possibly be a positive and useful diet for people with diabetes, some going so far to say it is harmful.

The other day as many of my friends shared the NY Times article, I saw them plead for others to open their minds. I want that, too! I want people to have the information about how LC might work as a diabetes management strategy and be open to the idea. But more than that, I want people to then choose what works for them.

And when it comes to parenting (and I know that I don’t have a kid with diabetes, but I am a parent), I know this to be true: we all want what is best for our children. The thirteen-year-old in our house doesn’t have complete autonomy over food choices, because I do ninety percent of the shopping for food and cooking. I like it that way, because I get to eat what I want, and don’t have to do any of the cleaning up after I’ve messed up the kitchen! Win, win!

While she doesn’t have a choice in what is served up at the dinner table, she does get to decide what of it she eats. I know she doesn’t have diabetes, so when it comes to thinking about food, she doesn’t have to consider her glucose levels. But there is far more to health than that.

I am doing all I can to inform and educate her on what makes for a healthy, balanced diet. I have to trust that what I am doing is enough to result in her making healthy choices most of the time.

Choice – that’s what Georgie was writing about. Is it really that hard to understand?

In kind of related, but really, just that I want to share something: this nut and seed bread is incredible:  

It’s low carb (at least, it is the way I make it, because I swap the oats for coarsely ground hazelnuts) and, quite frankly, is the best thing I have ever eaten. (To make it decidedly not low carb, slather in Nutella…!)

There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.

Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.

Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.

Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.

Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’

And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.

Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.

Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.

Drops in; vision blurring. Waiting…

Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’

Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’

Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.

Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.

And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’

Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.

Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.

And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’

When I was in my teens and twenties, I was, just as many women are, dismayed with the way I looked, and susceptible to the claims of beauty products that promised I could be thinner, more toned, more beautiful, smoother, more attractive, more <insert whichever part of me obviously needed improving>.

Of course, all of the things I was desperate to change and refine were measures of my worth, right? Because if I was thinner, more toned, more beautiful, smoother, more attractive, more <insert required improvement> that would make me a better person. Right? Of course.

I didn’t look like one of the supermodels (not just models, mind; these ones were super) that were everywhere I looked. At the time, I was spending all my energies being a flute player, but even the classical musical world wasn’t spared the attention to how women should look, with Jane Rutter suddenly appearing wrapped in nothing more than a bedsheet and a sultry look (impressive with a flute shoved against her bottom lip, while playing Debussy). ‘Great’, I thought. ‘Now not only do I have to look like a fucking model. I have to do it while playing flute. Naked.’

The feelings of inadequacy were strong and I know I spent far too much time desperately wishing I looked different. I probably spent too much money on products that promised to make that happen. And delivered nothing.

When I was twenty-one, someone gave me a copy of Kaz Cooke’s fabulous book Real Gorgeous. I can’t remember who it was, but suspect it was my mother. I read it in one sitting. I already knew of Kaz Cooke (from her brilliant ‘Keep Yourself Nice’ column in the weekend papers), but this book was a revelation. She laid bare all the sneaky tips and tricks and lies the beauty industry used to expose our insecurities, feel as though we needed to be different and, subsequently, buy their products. Of course, I already knew what she was saying. There was nothing in there that, when I had a moment of rational thinking, I didn’t already understand. But to have it set out so practically and emphatically was just what I needed to get over the idea that I needed to look and be different to how I was.

I actually saw Kaz at Marios over the weekend and stopped her she walked past me. I introduced myself and the kid (who was so horrified and embarrassed that she looked as though she wished the ground would swallow her up), and thanked her for all her books, but especially Real Gorgeous. ‘It saved me, in some ways.’ I told her.

And it did. It stopped the self-doubt. And it made me confident enough to admit to myself that I was more than enough. Just the way I was. And that nothing about the way I looked needed improving. (Thankfully, this was before I tried any naked flute playing. At least, any in public…)

As it turns out, I struggled with the same insecurities and feelings of inadequacy and self-doubt when it came to being diagnosed with diabetes. I think it is only in recent years that I have come to understand that the constant second guessing about being good enough achieves nothing other than increasing my anxieties and contributing to burn out.

With time, I came to apply the same cynical filters to diabetes product advertising as I now had permanently in place when looking at health and beauty advertising. In the same way that not every woman looks like Cindy Crawford, not every blood glucose check will be 4.8mmol/l.

‘Real Gorgeous’ wisdom on the left. Real diabetes on the right.

One of the most damaging things that we can do is compare ourselves to others. Because when we do, we often fall short. Our A1c may be higher, our time in range lower, our technology not as advanced, our healthcare professionals not the ones on the TV or on conference stages.

Being around and sharing with others living with diabetes is wonderful (here are twenty reasons why) but it can be damaging if the only thing you are doing is using them as a yardstick for your own diabetes.

It took me many years to stop feeling that I needed to ‘keep up’ with my diabetes peers, or that my diabetes needed to look like someone else’s diabetes. While I may try to align myself with others who have similar ideas about diabetes, I do it on my own terms, using and doing the things that work best for me.

The way I have adopted DIYAPS is not the same as many others. I call it ‘Loop Lite’, using just the absolute basics, without any of the add-ons. I don’t produce pages of graphs to analyse, because that’s not what I need. But what I do is perfect for me.

The same goes for finding the way to an eating plan that works for me. While learning about the details of LCHF, I refused to go ‘all in’ as many seem to. I adapted it for the way I live.

The way I do diabetes and the way my diabetes behaves is enough. It is right for me. It is my Real Diabetes.

Today, I have a brand new copy of Real Gorgeous on my desk, all wrapped up. It’s a gift for the kidlet who is already a huge Kaz Cooke fan (she has had Girls Stuff on her shelf for a few years now).  She already has a very healthy filter when it comes to beauty advertising, but I know that it is possible that she will be susceptible to the same feelings of self-doubt that I was.

I want her to know she is enough. So very much more than enough. We all are.

Click on photo to order your own copy of ‘Real Gorgeous’.

Today I’m in Sydney giving a talk to the team at Roche about how I try (and generally fail) to simplify the most complex health condition in the world.

Alas, as I finished prepping my slide deck, I realised I have no real solutions and actually, diabetes remains bloody complex.

As you were…

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