Seven observations on using the FreeStyle Libre for a week

hand holding FreeStyle libre meter
You will prise this from my cold, dead hand…

Blood, I miss the sight of you… I’d gotten used to those tiny beads that popped from the tips of my fingers several times a day. This week, not so much.

And as misses go, it’s a rubbish one, right?

As the proud new owner of a FreeStyle Libre (may the universe rain her blessings down on NHS Greater Glasgow and Clyde), I know the much-vaunted advantages. Ability to test more often and easily. Probable positive effect on your HbA1c levels (the long-term measure of blood glucose in the body) and reduced likelihood of complications.

Here, then, are my observations on the lesser quoted points you notice when you wear one…

  1. I’m clumsy as heck. Yes, I keep bumping into door frames. Maybe I always have walked into them on a regular basis but when I hit my right arm (the one I’m wearing the sensor on) off a door frame, I notice. Three times in the first four hours of wearing it.
  2. The absence of black dots. Those of us who’ve spent our lives doing five or six blood tests a day (see above) can hold out fingers tips covered in tiny black dots. Occasionally, the skin peels away in protest. Three days in and mine VANISHED.
  3. Oh, the joy of the night-time test! You wake up, roll over, grab the sensor from our bedside table and wave it in the direction of your arm. Voila! The result. No messing around opening that wee case up, taking out the tube of sticks, popping it open, finding a stick and taking three attempts to insert it into meter, pricking your finger and missing the stick with the dot of blood, etc. And all done in the dark because you don’t want to disturb your other half.
  4. No more vampire impressions. I did blood tests on public transport, in offices, when out and about, in the gym, the cinema, the pub, restaurants and more. And I was discreet about it, but when your finger bleeds you suck it to get rid of the excess, right? Some folks think that is disgusting or that you should always wipe it on a tissue or surgical wipe. Who has the foresight to carry all that around as well as everything else?
  5. Having to remind yourself you can test whenever the heck you want. I’ll get used to the feeling quickly but I’m still adjusting. Shall I test again? No, no I only pricked my finger an hour ago and I’m only prescribed XX amount of sticks every months so no… Stop right there, lady. Shall I run the meter over my sensor again? Yes, yes, yes!*
  6. Staring at your graph. Oh the fascination of watching what your blood sugar levels get up to over eight hours. Telling yourself you will record this properly, oh yes you will, and work out patterns so you can make educated adjustments, rather than relying on guesswork.
  7. Missing the sight of blood. As you might have guessed, the intro to this piece was a big, fat lie. I’m one hundred percent happy that bloody fingers are a thing of the past (ish, you still have to do some).

* Ten’s the recommendation, in case you were wondering. Too many’s not good on the sanity levels.

My people all together – #type1diabetes

blood testing equipment type 1 diabetesEver sat in a room and thought, “I am with my people”? That was my experience this week as I attended an education session the NHS had put on; my attendance a condition for prescription of the Abbot FreeStyle Libre.

I doubt I’ve ever been in a room with so many other type 1 diabetics. Sure, type 1 is a hidden condition. Perhaps others travel on trains with me or flit about the offices of the University of Glasgow dropping their test strips wherever they go?* Still, my original statement holds. I reckoned on about 200 people there, with perhaps a third of them partners or parents.

All shapes and sizes

I arrived at the Queen Elizabeth University Hospital early and watched in fascination as folks trooped in to the lecture theatre. We come in all shapes and sizes—all ages, all colours and all creeds. Who were the ones with diabetes? I put it down to those of us who carried our precious bag—the FreeStyle Libre and the doctor’s letter handed out when we registered—tightly. I’d expected lots of young people, but that wasn’t the case. The average age, I reckon, was mid to late 30s. Every time I saw someone who looked a lot older come in, I cheered silently.

Take that, reduced life span, and shove it where the sun don’t shine.

Our session took the form of a PowerPoint presentation by one of the diabetologists at the hospital, followed by some Q and As. I didn’t bother asking anything. As an introvert, I’m not going to raise my hand in a room that full of folks—even if they are my people. But there were plenty who didn’t suffer from shyness who dived in.

Can you scan your sensor through clothes? Yup. (So handy!)

Can you swim with it? Yes, but only half an hour is recommended. (Seriously, do people swim for longer than that? It’s the world’s most boring form of exercise unless you’re in open water.)

How long does it take for the prescription to come through once you hand the letter to your doctor? About 48 hours.

Can you connect it to your phone? Yes—there’s an app for it.

What happens if it keeps falling off? Some people have slippier skin than others. Thankfully, the two times I tried the sensor it stayed in place for its allotted fourteen days.

Talking to my people

I longed to talk to my people, but didn’t. See above-mentioned introvert tendencies. Who would I have chosen? The Indian girl who talked about running, exercising and wearing a sensor? The man behind me who asked if the Libre 2—the one with alarms that sound if your blood sugar levels go up or down too rapidly—would be available for us in the future? The glamorous young couple where I couldn’t work out which one would hold out the fingers covered in black dots from too much finger-pricking?

No. The one I’d have picked out was the woman I guessed to be in her late 30s who came in with an older man and woman I took to be her mum and dad. I watched her sit down near me and wiped away a wee tear. That might have been me once upon a time, attending with my lovely, supportive ma and pa. My father died nine years ago and how I’d love to have shared this new, wonderful development in diabetes care with him.

Session over, my precious bag and I got onto the bus to go home. “A new chapter, Emma B,” I said to myself. “How terribly exciting.”

*About to become a non-problem. Yay!

Type 1s in the US dreading their 26th birthday

insuline supplies on the Diabetes Diet websiteSometimes a story pops up which serves as a timely reminder of how lucky we in the UK are (catastrophic, undemocratic political shenanigans which might lead to insulin shortages anyway notwithstanding)…

This week’s news feature that popped out to me was a BuzzFeed article about Millennial type 1s in the US, forced to come off their parents’ health insurance at the age of twenty-six. Insulin prices in the US tripled from 2002 to 2013 and a recent study found its average annual cost increased from $3,200 to $5,900 a year from 2012 to 2016. Unregulated capitalism—always a good thing, hmm?

Most Millennials, the article pointed out, have to contend with the long-felt after-effects of the 2008 financial crisis, debts left over from college or university and the gig economy where it is hard to get health insurance in the first place. Or there are jobs that don’t have insurance, the insurance doesn’t cover diabetes or the deductibles are so high, the insurance isn’t worth the paper it’s written on.

Rationing insulin

The reporter spoke with a number of twenty-six-year-olds forced into rationing insulin and using syringes and lancets repeatedly to try to keep costs down. One mentioned skipping meals so he didn’t need to take at least one dose a day, and another said her insurance didn’t cover the insulin she’d previously used. The one it sanctioned made her feel ill.

Why the age of twenty six? As the article states, outgrowing your parents’ health insurance has always been an issue for young adults with chronic health conditions. The Affordable Care Act of 2010 allowed them to stay on that insurance until they got to twenty-six—a universal deadline.

Even government-sponsored insurance is so “stupid expensive” one person quoted in the article said, it’s not worth it.

Different career path

And what about job choices? Again, those featured in the article spoke about sacrificing what they really wanted to do for a job or career path that offered sufficient financial reward or great insurance in order to get the life-saving medication they need.

Twenty-five-year old Allie Marotta told BuzzFeed she fears the approaching deadline.

“Being postgrad, figuring out your career,” she said, “all of that is crazy to begin with, and then adding the layer of worry about medical stuff and having it be a life-or-death situation, literally a life-or-death situation all the time.

“It shouldn’t be this hard. You see other countries doing it and it’s not this hard. There’s no reason for this to be the way that it is.”

Diabetes and the ol’ green monster

Me this week. Not attractive, I know

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…

No awards for long service

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.

Patience, not one of my virtues

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.

The blessings of perspective

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.

The Five Best Low-Carb Hacks

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:

Make your home carb-proof

bar of chocolate on the diabetes diet
Get thee behind me, Satan…

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*.

Have easy meals

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.

Eat two starters when out

Starters tend to be lower in carbs than main courses, so go for two of them. Three, if you are very hungry.

Stock up on low-carb snacks

Cheese, olives, unsalted nuts, hard-boiled eggs… all help satisfy cravings and have plenty of protein for satiety.

Try some of the substitutes

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…

The Quirky Things About Being a Type 1 Diabetic

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 picture of a blood testing machine on The Diabetes Diet

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.