As many of you may know, this week is D-Week, and Diabetes UK have been (brilliantly) flooding the theme ‘Know Diabetes. Fight Diabetes’ all over social media, encouraging us to get involved.
Now we all know diabetes can be a struggle – heck, its 8.15am on a Friday and I’m sitting in the office stuffing a chocolate bar to stop myself fainting before I’ve even opened my emails – that’s just part of the game. But I think the real message DUK are trying to get across with the ‘Fight Diabetes’ part of this slogan is that they are fighting for us to get the care and support that we need, fund research and stop discrimination – and I’m all for this.
Now – how about ‘Know Diabetes’? After walking out of my GP’s surgery yesterday with both a completely new insulin prescription and a completely raised HbA1c result (ugh), and, if I’m honest, feeling a bit overwhelmed, it got me thinking – how much do I really know about my body and my diabetes? So to start – lets flip back alllll the way to a Friday afternoon almost 13 years ago where it all began – diagnosis day.
25/06/2004 – My diagnosis
So – did I know I had T1 Diabetes?
In a word – no. I had NO idea. I’ve written this before, but rewinding back to that Friday, my Mum hadn’t dragged me to see my GP about the fact that was a bit tired, a bit skinner, and, as my Dad liked to call me (ha!), a bit of a slack bladder (it’s OK Dad – I did pee a lot. Honestly thinking back it now trying to get me in a car for more than an hour was a bloody nightmare – sorry about that…!). I was at the GP’s for something completely different – but as she assessed me, and asked more questions, I think something must have clicked for her – as after asking me to pee in a pot, she then pricked my finger, and within the hour I was sitting in hospital being taught how to inject water into an orange.
I was always told that my T1 was ‘caught’ early – and to this day I still think that it’s thanks to that particular GP that I found out when I did – because she has T1 Diabetes too. I personally feel that being able to diagnose T1 in the early stages without having much experience of it yourself must be quite difficult – because many people – like I didn’t – probably don’t feel like there’s something wrong. So I’m pretty darn thankful that my GP did know T1 inside and out, as leaving it undiagnosed any longer could have left me in a much worse situation.
Did I know what diabetes was?
Ha – again, I’m afraid the answer to this one is no. As awful as this is – at the age of 12, to me T1D was being able to wear a necklace to school and maybe even eat a KitKat in class – as that’s the only experience I’d ever had of it through one of my classmates having T1. I never saw her do her injections, as her mum would come in at lunchtime and help, but we did often see her check her blood sugars. Apart from that? She was just like everyone else (of course with the added benefit in my opinion at the time (!) of being allowed to wear jewellery and eat chocolate every now and then…) – so actually, when the GP told me ‘you have T1 Diabetes’, I didn’t really react. I didn’t think anything of it – I just thought it’s going to be fine – no big deal.
I think that’s the beauty of being diagnosed as a child – as you don’t dwell on the negatives so much. I remember laughing when my Dr. at hospital started explaining ‘hyper and hypo’ to me, as I just replied ‘I’m always hyper!’ (Of course, meaning energetic – having no idea that hyper in Diabetes terms actually meant the complete opposite – an ironically, I was always hyper without insulin. Ha. Confusing – but just reiterates how ‘fine’ I must have felt, I guess). I remember refusing to stay the night in hospital because I had a netball match the next morning that I ‘just couldn’t miss’ – and I didn’t. I just got up, did my new injection, and went and played (my poor Mum!). Kids just have a way of ‘getting on with things’, and not really thinking about the consequences – which, at that time, was probably a blessing in disguise.
The point where I think the whole ‘diabetes’ thing really hit me was when I had my first hypo. I can’t remember how many days later it was after being diagnosed, but I think up until this point I thought that diabetes was just doing a couple of injections and finger pricks a day, and everything else would continue as normal. Anyway, after realising that that actually wasn’t the case – and that hypos were pretty horrible – I freaked out (and cried!) – And I think that’s the moment I knew I had T1.
16/06/2017 – Today
Ok so let’s fast-forward 13 years to today – I still have diabetes, I still treat it with daily injections, and I definitely still don’t know everything about it. But I probably do know a heck of a lot more.
Would I know if I had diabetes today?
I’m going to be honest here – if I was somebody not exposed to T1 and its symptoms, I’m not sure I would link my ridiculous peeing habits to T1 diabetes straight away. But I do think that I would twig soon enough that if I started losing weight for no reason, coupled with almost hangover-like excessive thirst that I have when my blood sugar is high, that something wasn’t right.
So for anyone unsure – the main symptoms for T1 diabetes, known as the ‘4 T’s’ are Toilet, Thirsty, Tired, Thinner – they might seem vague, but they really are the warning signs that your body has too much glucose floating around that it’s not able to use properly – so if you do feel any of these, don’t hesitate to see a GP.
What do I know today that I didn’t know a few years ago?
Thankfully, this is quite a long list – T1 is a MASSIVE learning curve and there’s lots to take on board and it can be a bit crazy sometimes. But there are definitely some key bits I think I’ve learnt over the past few years which may or may not help you guys:
- HbA1c results are not the ‘be all and end all’
HbA1c results basically give you an average glucose reading over the last 3 months (I’ve written a bit more about this here for anyone interested) – but it’s important to take your HbA1c results with a pinch of salt, as it really is just one number.
Sure, you could have a fantastic HbA1c result within the 5-6’s% – but what if that average is taken from a severe number of very high and very low blood sugar levels? Take this make-shift graph below (apologies – my Excel skills aren’t exactly pro) – these blood sugar readings would probably give rise to a similar HbA1c result which, on the face of it, looks great – but that single average gives no indication about the fluctuations in BS’s experienced over the 3 months.
- Eating lower – carb does help my blood sugars
I know many have different views re eating low-carb/keto as a way of helping T1 Diabetes – personally, my view is eat what makes you happy – that’s what insulin is for! But there’s no denying it – my blood sugars are definitely more stable when I focus on a lower carb diet. Now this may not be the case for everyone, but to me it makes sense – at the end of the day, my body can’t process carbs. It just can’t. So of course – trying to make it process carbs is always going to be tricky – but tackle it carefully with lower carb counts and less ‘insulin guessing’, and the challenge is usually lessened.
- Do your research and push for what you need
Unfortunately, T1 is a massively self-treatment based condition, and I’ve come to realise that you’ve got to help yourself in order to get the help you need. A classic example of this is yesterday when I turned up to my GP and asked about ‘Fiasp’ (a newly approved rapid insulin which works even faster than NovoRapid – SO exciting). Now my nurse had never heard of Fiasp – and I had to explain what it was to her and show her loads information and websites about it – but once she understood, and saw that it was available on prescription for an equal cost to NovoRapid, she was more than happy to approve my prescription. But had I not bought it up myself – it’s unlikely that this would have been mentioned to me anytime soon.
The same goes for pump therapy and structured education – if you want it, push for it. I’ve made calls, I’ve made my nurse make calls, I’ve talked to Input, I’ve done the lot – and that’s all just to get myself onto a structure education course. Not all clinics work in the same way – but if you feel like there is care available that you would benefit from, you’ve just gotta’ go for it make the right people aware of your needs. GO GIRL (/boy) GO.
- It’s really nice to meet others with T1 Diabetes
I was thinking about why this is so nice the other day, and realised it’s pretty relatable to a lot of things. Bad days at work, exam stress, moving to University – all these big scary things are a loadddd easier if you can talk and rant to someone else about them – and better still, someone going through the same thing. So again I’d say go for it – chat to people on Twitter (there’s LOADS of T1’s on there – you can’t miss them!), sign up to Type 1 Events run by DUK, and have a search around on Facebook for any T1 Meetup’s going on – again, there are loads out there, and it really is nice to whack out your finger pricker alongside someone else doing the same thing for once.