I’ve included links in this post to give further information about terms that people may not know. Feel free to google anything at any point, or leave me a comment so I can help you out!
I have been a type 1 diabetic since 2006, when I was diagnosed aged 8 (that’s 12 years ago!!!!). I was the first to be diagnosed in my family, having picked up a virus that wreaked havoc with my immune system and destroyed my pancreas (shit luck, right?) Worse when you consider that it took a year for me to get a diagnosis, because doctors kept telling me ‘it’s just a virus, you’ll get better. One year later, a year of school missed and half my body weight gone, a doctor finally did a simple finger prick test and sent me straight to hospital, where I stayed for 5 days and was diagnosed with T1D).
My relationship with diabetes is… rocky, to put it mildly. I never accepted the diagnosis (I still don’t) and it’s wrecked my mental health.
Some background info before I get into this post properly-
When I was 11/12, I got an insulin pump. This is a device that clips onto the waistband of your trousers and is connected to your body (generally stomach or buttock) by a plastic cannula, held by a sticky plaster, and a plastic tube going to the pump. This replaces the traditional insulin injections that are associated with diabetes. It is revolutionary technology- you type in how many units of insulin you want it to deliver (based off calculations and conversions of carbs and blood sugar levels- the constant carb counting was another factor of deteriorating mental health and subsequent binge eating/starvation- and an eating disorder called ‘diabulimia‘). In theory, great, and a lifesaver for some.
Because of the nature of the insulin delivery (a basal-bolus regime), it undoubtedly improves your diabetes control. However, for me I couldn’t stand having something attached to my body which turned my invisible illness into something much more visible. As far as the rest of the world were concerned, I didn’t want anyone to know I was diabetic and having the pump attracted lots of questions- ‘why has your phone got a wire?’ ‘Is that a video game?’ ‘What happens if I pull on the wire’ (FOR THE LOVE OF GOD DONT PULL THE WIRE PLEASE). I had the pump for about 4 years, before deciding with my doctor to have a ‘pump holiday’ and never going back.
Fast forward to 2018, aged 20, where I’m under the care of a different diabetes team in a different city. I was told about a clinical trial involving the freestyle Libre- a type of intermittently scanned continuous glucose monitor. It’s a sensor the size of a £2 coin that you apply to your upper arm- similar to the pump, it was a small plastic cannula and sticky backing to hold it on.
It’s not difficult or painful to apply, and really is pretty insignificant. The clinical trial involved having one sensor on each arm for 2 weeks, and scanning both every few hours to check the sensitivity of the technology. I fell in love with not having to do fingerpricks to check my blood sugars anymore- my fingers were scarred with black dots from years of testing. Instead, I scan it either on a meter or with an app on my phone, and it produces a graph to tell you what your sugars have been doing for the last 8 hours- v nifty.
not my graph above unfortunately…
After the trial finished, I knew I wanted to start on the Libre asap- despite still hating having a visible reminder that screamed DIABETES on me. I’m sure that the sensor is much more noticeable to me than anyone else, but it still scares me.
The main issue is that, despite the NHS recommending CGM’s for all diabetics, getting NHS funding is a challenge- a big challenge. I was told I’d have to be doing over 8 tests a day to qualify (damn, I was doing none at this point. I hadn’t actually tested my blood sugar in about 3 months, just relying on my ‘sense’ of what my blood sugar was- which should never be underestimated, it’s remarkably accurate). Turned out actually that wasn’t the case, and that I qualified for funding because my HbA1c was high, so I was added to the list to be discussed. Children automatically qualify for funding because of the amazing improvements the sensor can give.
In the mean time, I self funded the sensors. One sensor lasts for 2 weeks (before it’s removed and a new one put on the other arm) and one sensor was costing me £57. That’s over £100 for a month of treatment, and something that was changing my life. I only found out recently that my HbA1c, which was 13.2% before starting on the Libre (very very high) has fallen to 9.9% since starting (still high but not that high!!) and that bodes well because one of the conditions of continuing funding is being able to demonstrate an improvement in HbA1c.
High HbA1c levels are what lead to the complications of diabetes- kidney failure, eye damage (I have mild damage to the nerves in one eye because of diabetes- but my poor eyesight generally is just shit luck again), foot ulcers, yeast infections, heart disease, loss of sensation/nerve pain in hands and feet (I don’t have nerve damage in my hands, but do suffer from nerve hypersensitivity which reduces feeling and gives me pain in my hands- unrelated to diabetes though) and more- it’s a really cheery future.
After months of waiting for funding to be approved, I finally heard back that I’d been given funding for 6 months initially (will be reviewed after 6 months to see if I hit my targets- in which case, it can be extended).
I still have problems with the Libre- I’ve constantly paranoid about it falling/being pulled off, which means I wear a plaster around it to hold it on, which reacts with my skin and gives me bruises, rashes and eczema (fun). I still hate having something on my body- although it has fuelled conversations with other diabetics who spot it and know I’m one of them. It gives me stupid looking tan lines. I’ve had people at work come up to my and pull up my sleeve just to have a gawp- or even worse, say ‘oh you’ve got something stuck to you, let me get it off for you…’ (NO WHY ARE PEOPLE OBSESSED WITH PULLING THINGS JUST STOP).
A few of my tips for making my Libre stick longer, which really reassure me:
- Exfoliate your arm before putting it on- I use St Ives exfoliator, because that’s what I use for my face..
- The plasters do help. I get mine from PimpMyDiabetes (Canadian based company, reasonable prices!!)
- Some have said that pressing on the visible sticker around the sensor with a teaspoon can help it stick? Not 100% sure but worth a try.
I’d love to find a way to learn to love my body, diabetes and associated technology with it. Mental health care for people with diabetes is poor (an understatement) despite the majority of people with diabetes (or people with chronic illness in general) suffering in some way. When I was first diagnosed, I apparently saw a counsellor for a while- I have hazy memories of this, but really just remember seeing a lady and playing board games with her once a week??
I now see a specific diabetes counsellor, which in theory is great, but in reality there’s only enough funding for him to work one day a week, meaning I waited 9 months to be seen by him and now see him for an hour every 2 months. Better than nothing? Sort of. I self referred to the community mental health team, who have a specific team for chronic illness, and even a specific team for diabetes! Hurrah! I had an assessment with them and was told that my ‘diabetes distress score’ was apparently too high for them, and would they like me to be referred to the diabetes psychologist at the hospital? I explained that them that the diabetes psychologist at the hospital has told me to refer myself to them because he felt I needed at least once weekly CBT and he couldn’t offer that. The other service wouldn’t accept me and told me to self refer later in the future if I wanted.
Better funding for diabetes psychology is something I’d love to raise awareness/funds for, but have no idea how you’d go about that? A challenge for another day.
This post didn’t turn out to be the post I thought it would be, but I feel like it might have been valuable? Felt cathartic for me to write anyways. Me and my diabetes have been on a 12 year long journey together, full of downs and slightly worse downs and very much worse downs, but it’s a journey that I have to stay on no matter what, so I’m hoping I’ll learn to embrace it soon.