I’ve been mucking about with video creation at the moment and here’s one I made for the diabetes diet. Stephen Spielberg has nothing to fear, but it’s a start, right?
I’ve been mucking about with video creation at the moment and here’s one I made for the diabetes diet. Stephen Spielberg has nothing to fear, but it’s a start, right?
Ah, the green monster… It surfaced this week, startling me with its intensity. I’m talking about jealousy and the mean feelings I experience occasionally in relation to diabetes.
Every week, the mighty search engine that is Google picks out the week’s diabetes news for me. Most of the time, it includes new research, a dose of doom and gloom where scientists and doctors reinforce the lower life expectancy/increased likelihood of contracting a nasty side effect (Gee, thanks folks) and a Daily Express article telling you to eat this food to avoid diabetes*.
This week’s offerings included a video on the BBC where a teenage type 1 spoke about the pump she wears which uses artificial intelligence to monitor her blood sugars and keep them within normal range, and how it will allow her to soar through life. She’s one of the first type 1s to get this pump on the NHS.
Believe me, I know a one minute 55 second film clip tells nothing like the full story. I don’t know the extent of the teenager’s medical background. Her mother, the video showed, found it hard to sleep at nights because she was so worried about her daughter’s overnight hypos. I get it, I get it, I get it…
But the horrible green monster reared up anyway. “It’s always the young ones,” I muttered, bad-temperedly. There might even have been a self-pitying tear or two. “What about me—don’t I get an award for long service? Thirty seven years with this ruddy condition! There are empty jelly baby packets in landfill sites all over Scotland to prove it**. I wouldn’t mind soaring myself.”
The nasty bout of whingeing was in part triggered by a letter I received this week relating to my progress on the flash glucose monitoring (FGM) waiting list. At my appointment at the diabetic clinic in September last year, the doctor put me on that oh so elusive list. The waiting list was only the start. After that, a mandatory half-day educational course takes place and then a letter wings its way to your GP requesting they prescribe FGM. Still there I was. ON THE LIST!!!
“Happy days, Emma!” I said to myself as I skipped out of the clinic, phoning my mum and then husband to share the good news. They whoop-whooped too.
I waited. And waited. “Well, I suppose those half-day courses are over-subscribed,” I said to myself. Friends, patience isn’t among my virtues but I held off writing to the good doctor to request a situation update until the beginning of March. The letter I got in return said there is a cap on funding and until that increases, I’m on a static waiting list.
Again, I get it. Times are tight, but every other type 1 I know sports one of those FGM thingies on their arm, included blasted Theresa May. (Admittedly, I don’t know that many type 1s.)
Here’s the thing—I never envy other people their non-diabetes status. A long time ago, my brain must have told my heart jealousy over the impossibility/unlikeliness of a cure in my lifetime was too much of a wasted effort. But when I read of other diabetics and their access to the latest tools and tech, I glow so green I’m practically radioactive.
Fortunately, perspective kicked in after twenty minutes or so of mumping and moaning to myself. In the US, two senators have launched an investigation into rising insulin prices (585 percent from 2001 to 2015 for Eli Lilly’s Humalog, for instance), and this in the world’s wealthiest country. Many people have tried swapping insulin types and brands, changing to something that might not work as well for them or worse, stopping it or rationing it.
In addition, part of my work at the moment involves communications for a health-based project in two African countries where access to any diabetic medication is seriously limited, and knowledge of how to treat the condition not as wide-spread as it is in the developed world.
I don’t have the latest up to date equipment, but I do have insulin (Brexit fears aside), plenty of test strips and all the other bits and pieces I need. The green monster surfaces from time to time, as I’m sure it does with you. Let it do its whinge-y bit and then remind Madam Monster we do live in the best of times for people with diabetes (country dependent of course). If I’d been born 100 years earlier, I wouldn’t have made my 11th birthday. So, Emma 1, Jealousy 0.5.
*Yet to click on that one as I assume it’s click bait.
**They will outlive me.
Here at the Diabetes Diet, we’re fully on board with the making life easier message. Living with diabetes is like supporting a part-time job on top of everything else in your life.
And boy, if we were unionised, we’d revolt against the lack of time off and sick pay (ha!), and work conditions that are an uphill struggle all the time… One of the reasons low-carb diets make life easier for the sugar-challenged is that we don’t have to spend ages figuring out how many carbs are in particular dishes and how much insulin we need to cover them. Meat, sauce and salad is a lot easier to work out than meat, veg, roast potatoes and a Yorkshire pudding.
So, with that in mind, here are our favourite hacks:
If it’s not there, you won’t miss it. Temptation comes in many forms, but it’s much easier to ignore the siren call of crisps or chocolate if you don’t keep them in the house*.
If you can master the omelette, fried fish, steaks, burgers or open a tin of tuna, mix it with mayonnaise and tip it on a bed of crispy salad, you’re laughing. Diabetes makes you tired. Have some go-to super-fast meals you can make quicker in the time it takes to order and wait for a take-away.
Starters tend to be lower in carbs than main courses, so go for two of them. Three, if you are very hungry.
Cheese, olives, unsalted nuts, hard-boiled eggs… all help satisfy cravings and have plenty of protein for satiety.
To be honest, I’ve yet to meet the low-carb bread recipe that convinces me, but some of the baking ideas might work for you. Bread, cakes, biscuits and even fudge are out there so why not give some of them a try?
*Reader, all too often I slip on this one. Or do that thing where I buy crisps or chocolate for my other half, kidding myself that they are for him. No, no, not me oh luscious purple-foil wrapped packet…
Because I am hyper-organised (crap), I scheduled time to write a post for World Diabetes Day—spot the deliberate mistake. Said designated day took place on 14 November, unmarked by we at the Diabetes Diet. Hey ho!
Instead, here I am posting about it more than a week later. You could argue that living with diabetes also takes place on the other 363 days (and the extra one every four years) of the year, so why make the 14th special, although awareness-raising exercises are always useful.
Anyway, I thought I’d list some of the quirky things about living with diabetes. We all know the big stuff, but there are some teeny-tiny bits you put up with which aren’t obvious to those who don’t have the condition…
Gnawing anxiety when parted from your bag. I have an industrial-sized handbag so I can carry around everything—blood testing equipment, two pens, spare needles, jelly babies and a full make-up kit*. When I visit people and they try to take my bag from me to put it with coats, I cling to it. I’m never more than a few metres from that bag.
A trail of litter that follows you everywhere. I do my best to dispose of it at the time, but I wish someone would invent a small bin that magically appears at your side every time you do a blood test or injection so you can throw away your used needles and blood testing sticks there and then. Every few days or so, I have to do a clear out of my bag where old needles, their wrapping and used sticks gather at the bottom. Once, I was in Regent’s Park in London and I spotted a used blood testing stick on the group and it delighted me. I knew it wasn’t mine**, but the thought that there was another type 1 in the vicinity felt comforting.
An aversion to ordering drinks when you are out that are in a glass. How do you know it’s the diet version? I only feel secure when my drink comes in its bottle or can. Otherwise, you might end up drinking the full-sugar one which will hit you like a sledge hammer almost immediately.
Puncture-marked fingers. I’m still on the waiting list for the FreeStyle Libre so in the meantime, my fingers keep that little collection of black dots that marks frequent finger pricking. You are supposed to vary the fingers, but my right hand bears the brunt of tests because I’m left-handed.
Toilets are very important. High blood sugars make you pee a lot and the first thing I work out whenever I go anywhere is—where’s the loo? Also, I’m not fussy. I have friends who won’t use dirty toilets such as the ones you get on trains. I don’t care. It’s a loo and it’s going to take me from bursting discomfort to huge relief in minutes.
It’s a full-time job. Managing diabetes takes up a lot of time and energy. You don’t get holidays and you can’t quit, and you have to do it on top of everything else you do. The boss is often a moody cow too. The skill-sets needed include arithmetic (figuring out insulin doses to match food), organisation (making sure you have everything you need when going out and keeping on top of your prescriptions), an understanding of biology and how your body works, and the ability to forward plan for most aspects of your life.
*Strictly speaking, not needed for diabetes
**On second thoughts, it could have been. Those things get everywhere. I’m always finding them in weird places.
You find me, un-sensored and sad… Yes, I’ve completed two weeks on the FreeStyle Libre sensor and reader system, and now I’m back to finger pricks, at least temporarily.
At my last diabetes clinic appointment, my consultant* agreed that I’m a candidate for flash glucose monitoring (which is different from blood glucose testing, but more on that later) and sent me off with a 14-day sensor while I wait for bureaucracy to kick in.
So, what’s flash glucose monitoring like? For the uninitiated, the system comprises a sensor you wear on the back of your arm and a reader that can be used any time. Type 1 diabetes tends to encourage obsessive compulsive behaviour, and the FreeStyle Libre system facilitates that, though it’s no bad thing.
Where flash glucose monitoring differs from blood testing is that the sensor reads levels from interstitial fluid, so it lags about four and a half minutes behind blood glucose readings. If you drive, the DVLA requires you to do blood tests, rather than scans beforehand to avoid the risk of hypos while driving.
Parents love them because they can check children with type 1 diabetes while they sleep, able to work out if they are risk of a hypo, and they are also routinely prescribed for pregnant women who have diabetes as frequent testing makes it easier to maintain the tight control you need while growing a baby.
The accompanying app can be downloaded by others, who can gain access to your information if you give them permission. Again, something that is useful for parents although such scrutiny would have horrified the teenage diabetic me.
Here’s what I found:
After a day or so of overcoming the hesitation—I can’t do another test, I just did one an hour ago… Oh. Yes, I can—I averaged 11 scans a day, and about two blood tests usually at the same time to check accuracy and a few times because I was hypo.
Easy-peasy-lemon-squeezy! You can use the reader through clothing, it only takes a few seconds. It’s much easier than pulling out a meter, sticks and finger-pricker—especially when you’re out and about.
I had the odd bit of disparity—usually if my blood sugar was low, as the sensor lags behind blood glucose readings. However, most of the blood tests I did at the same time varied only by 0.1 o 0.2 mmol, and I did get hypo readings that registered at the same time.
No issues there. That thing stuck to me for the two weeks. I didn’t do any swimming in that time, so I can’t attest to how well it works in that setting. Nor did I try it out in the sauna/steam room as threatened—though one suggestion a fellow user came up with was using cling film to bind it onto your arm. The reader lasted on the battery charge for the full two weeks too.
There are lots of things that sell flash glucose monitoring to me—ease and frequency of testing two of them—but there are other super-useful components. One is the pattern tool. You can see where you have the most glucose variability and when you tend to have hypos. In the two-week period, I had (ahem) 17 low glucose events, most of them between 11am and 5pm and that corresponded with the time of day I have most glucose variability.
I’ve never been good at logging my blood tests. It just feels too much like hard work. I know you can download from your meter, but the checks I made on the flash glucose monitor gave me a clear idea of what happens. And, more importantly, some ideas of how to fix it.
The excess hypos may have been because of the half-marathon, which happened not long after I started my 14-day sensor and because I’ve been eating more carbs. As we say in the Diabetes Diet, more carbs mean more insulin. Bigger amounts of insulin mean bigger mistakes. A salutary reminder, then, that it’s back on the low-carb for me.
Thanks too, to Steven Morrison—my blog and book co-author’s son—who emailed me in detail about his own experiences using the FreeStyle Libre. He’s a convert too, and the cling-film tip came from him.
So when does my prescription come in? I’m now on a list for a short course at the hospital and once I’ve taken part in that, the organisers write to my doctor recommending she add sensors to my list of prescribed diabetes medications and gear. Fingers crossed, it doesn’t take too long.
Ah, the good ol’ days of diabetes – glass syringes, peeing on sticks and rigid eating times.
We veterans remember them fondly and with the odd head shake in disbelief. Did it really used to be like that? by ‘eck, we have come far… Recently, I wrote a book, Artists Town, which features. a type 1 protagonist. My book is set in the early 1990s and life for we pancreatically-challenged has changed substantially since then.
My own diagnosis came in the 80s. Here’s what used to happen then. See if you remember any of this stuff, and newbies read it and gasp.
Insulin shortages and low-carb dishes—no obvious connection, I grant you but bear with me.
The first relates to a news item on Channel 4 last night, which warned of insulin shortages post-Brexit in the UK as the country produces little to no manufactured insulin (apart from a factory which makes the stuff derived from pigs).
Sir Michael Rawlins, the chair of the Medicines and Healthcare products Regulatory Agency, told the Pharmaceutical Journal last Friday that, “We make no insulin in the UK. We import every drop of it. You can’t transport insulin around ordinarily because it must be temperature-controlled. And there are 3.5 million people [with diabetes, some of whom] rely on insulin, not least the Prime Minister.”
Strictly speaking, that’s no true as the Channel 4 story pointed out. Wockhardt UK produces the animal insulin, but its products are used by some 1,500 to 2,000 patients every year. And that’s less than 0.5 percent of the estimated 421,000 people in the UK who rely on insulin.
Channel 4 News spoke to the major manufacturers, Sanofi, Novo Nordisk and Lilly. All of them make insulin in Europe.
The Healthcare Distribution Association (HDA) UK which represents medical suppliers in the UK wrote to the UK Government post the referendum in 2016 to warn of serious upsets to the supply chain should Brexit negotiations go wrong.
HDA UK said the UK medicines supply chain had “inbuilt resilience” and “flexibility”, and that they were aware of proposals by the government and manufacturers to develop plans for a buffer stock of all medicines.
A spokesperson for the Government said they were confident of reaching a deal, there were contingency plans in place to ensure no disruption to supplies.
Channel 4 News’ fact check conclusion is that as the companies and the Government don’t anticipate shortages, we should be okay.
Back to low-carb recipes and my tenuous attempt to link the two. If you follow a low-carb diet and you use insulin, in general you don’t need to take as much insulin. If shortages come, you’ll have more time to use your insulin while the powers-that-be attempt to sort out this almighty mess.
Cue plug for this blog and The Diabetes Diet! Is that distasteful of me?! Probably.