Diabetes Day…if you’re not part of the solution…

November 14th marks world diabetes day. 

This year is a huge year in terms of recognising how far research and technology have come. 100 years of people being able to be treated…seems like a long time ago yet it’s not, really. 

In such a small space of time technology has managed to find new ways of delivering insulin, testing blood sugars and supporting patient needs. 

What’s not come a long way is society. Now I’m not blaming everyone but there’s a small contingent of people who need educating. Let me tell you, in my experience, some of them are diabetics themselves. They are so badly managed or so poorly understand their condition that they've no idea what they’re contributing too.  Maybe they’re too stupid to care, I don’t know. 

Then there’s the “know it alls”! My nans cats sisters dogs owner was diabetic so I know everything types. Again, often it’s those who should know better who are the main perpetrators. Sometimes they’re “medical professionals” who have a little knowledge. I’ve been told by occupational health advisors to “take an extra shot of insulin when you’re low”…often I wonder if they want me to ring 999 myself first or hope someone else does it. 

Then there’s the bully’s. The trolls. People who just want to hurt you. 

The final group, those who say nothing. The people who hear; read or see actions that need to be challenged. Actions that should be challenged. Yet they stay silent. These are the ones I find most annoying. By saying nothing you’re accepting that behaviour. You’re saying yes that’s ok by me. You’d think these people would be weak people and maybe they are in some ways. The people who let us down the most, in my opinion, are these people. 

These negative people have appeared so often in my life.  Yet you never fail to be shocked by who they are. I’d love them to not only walk a mile in my shoes but spend a day inside my head…!! The maths we do daily is madness. 

It’s like having a million browsers open, whilst trying to safe break using instructions in a foreign language and listening to baby shark on repeat - some days!! 

So yes in my opinion what needs to come a long way is people. 

BUT, Not one to finish one a downer let’s celebrate the good members of our community. In no particular order…

The gorgeous folks in this group. Honestly they are all fab but some of them just feel like they’re family! These are the people awake in the middle of the night sharing your confusion, exhaustion and desire to rage bolus from goodness knows how far away. 

These two monkeys - who can find a bottle of “mummy juice” at a moments notice. Who know when I’m cranky because I’m low and who can both assist with libre scanning and pod changing ♥️ They are my heroes. 

This one! He wakes up in the middle of the night, puts up with my rages and makes sure I’m ok when I fall asleep in a hypo heap. 

My Dad, who refused point blank many years ago to inject an orange and has since had unwavering faith that I can do anything. 

The pup. He can sniff a hypo from a good distance and more importantly he can sniff it from as deep sleep. He is my companion every day and a complete superstar. 

I’m going to add in here my brother and sister who I doubt would thank me for posting photos of them. They know when I need a reality check and when I need a hug in lots of instances before I do. They take the hypo rages and although we fight it out, lots, stick by me when I need them. And our lovely Matt who always seems to be on hand when I hit the deck (lots in pregnancy) and who makes some of the best post hypo brew and biscuits. 

I’m going to mention those friends who are either part of our community or who have been so amazing and have supported me in any way. To the friends who I can pick up with where I left of last week, month or year and who understand when I’m not up to things. 

Lastly, my mum. She is, without doubt my rock. The person I ring at all hours. The one who drives me to appointments and holds my hand. Who minds the kinds when I shattered and who sits on every sports sideline with me cheering on the kids. She also drives us to all these events when we need her. She might be totally crazy but she’s my kind of crazy ♥️

 

So to the type one community I hope you’ve had a controlled WDD, to the positive influences thank you and to the negatives…well let’s hope you improve. 🤷🏼‍♀️

Let’s talk “professionals”

 

       Some if the current team with focus group members 

With diabetes it’s inevitable that you’ll need extra care. It might just be routine check ups but you’ll need to confirm you’re receiving the right treatment and for this you need a medical professional. For me this has always been done in a hospital setting. I don’t have the relationship or trust in my GP practice to receive my care there. Trust is an important factor for me in this relationship and I’d guess others may feel the same. 

To explain this let me go back to the start. My diagnosis wasn’t straight foreword. I’d been unwell and had family GP visits which hadn’t paid off. My poor parents where up the wall and the GP basically inferred they’d wasted his time. For some reason we had an on call visit from a different doctor, Dr C. She walked into the room, sniffed the air and told my parents to go straight to hospital. She could smell the ketones. I don’t remember a single thing about her, but she probably saved my life and so I’m eternally grateful. 

Upon arriving at the hospital we met one of the loveliest doctors I’ve ever known, Dr A. He is my hero. During childhood if I had to be admitted I’d always ask if he was there. As I grew older he moved up the professional ladder, yet he still always seemed to be around. He instilled confidence and determination in me. He was kind hearted, funny and so pleasantly spoken it was impossible not to trust him. He was there when I went in for diagnosis and a couple of years ago my son saw him 33 years later. Even just seeing him calmed me. 

My care during childhood was done by a diabetic nurse and a consultant. If I’m honest I didn’t have a good relationship with either and as I got older this didn’t change. The only thing I did like about clinic was when Cath was in. She was the most lovely nurse who did height; weight and attempted to keep you calm whilst the diabetic nurse shoved drops into your eyes. I hated going to clinic and as I got older would often try to think of excuses not to go. Thankfully my mum would always make me go but it was never  a productive or inspiring chat. I’d give one word answers and try not to engage. Even though I hated clinic at 16 I was disinclined to move to the adolescent clinic! 

Adolescent clinic was good and bad. They encouraged you to take part in the appointment and talked to you directly. M who was my nurse was amazing! She was firm but listened to me and what I was saying. She worked with me and encouraged me. My consultant was another matter. I don’t know if he was serving some kind of “time” or whether he didn’t like people or just didn’t like me. Either way it was the same as kids clinic when I had to see him. I felt angry that he didn’t listen and that he made lists of everything I was doing wrong with no solutions to the problems. But at least here I liked the DSN and the other staff. The problem was this was a transition clinic and as soon as I’d settled it was time to move up into the adult clinic (or at least that’s how it felt) I wasn’t very keen on another move but those where the rules. On the plus side hopefully this would be the last move as such. 

Arrival at adult clinic was super surprising. The HCAs who did height and weight seemed really friendly, not judgemental which I found nice. They filled in lots of the paper work and generally made me feel really at ease. The first DSN I met, J was lovely. She made me feel welcome at clinic and made me feel safe discussing everything (probably too much). She made me feel like anything was possible and I was really surprised by how quickly I began to open up to her. She’s since moved positions but she’s not changed. Still lovely; friendly and welcoming and to be honest more someone I’d consider a friend who I talk to about my condition. This makes it so much easier to get positive results. 

Around the same time I met the new consultant. This was the big issue for me as I’d rarely got in with them in the last. The nerves the night before where horrendous! It felt like the night before a job interview. I mentally made a list of all the things I’d done “wrong” or all the bad things I’d done. When my name was called I was worried a no idea why! Dr F turned out to be the most fantastic consultant. I feel like he listens to me! He talks to me about options and doesn’t ever push me into a decision I’m not sure or happy about. I’ve actually put up a fight in the past to be seen by him. When I was pregnant and transferred to a different consultant I repeatedly asked the nurse could I go back to his clinic. Always met with a no but then the consultants on pregnancy where generally good to. As always I had a preference as one termed things as instructions “you need to do this...” “you must try this...” The other talked to me in a similar manner to Dr F and made me feel like I was in control (pretty sure I wasn’t but at least it felt like I was some of the time). 

Pre-pregnancy  brought me to P. She is the most amazing DSN I have ever met. She’s a superstar. She knows me better than most. We have a very honest conversation whenever I see her. I don’t feel the need to hide anything. P has been through two pregnancies with me, she’s held my hand when I’ve been happy, sad, surprised and shocked. She came to see me on her day off just to make sure I was ok. I will be forever grateful to her for absolutely everything and hope that she’ll be around for a while longer as I can’t see me trusting anyone else this way!

We do have lots of other fab DSNs at our clinic and if I try to name them all I’ll definitely miss one out. They’re the people who ring me back in the middle of the week when I’m having a mini meltdown and talk me round; convince me I’m doing ok even if I can’t see it and promise to get P or J to phone me back. They’re also the wonderful people who go above and beyond when I need it. I hope they know they’re so valued even if we don’t always say it. 

For the first time in a long time we also have a wonderful dietician who I feel tries to understand me. C doesn’t instruct but listens and advises. Makes suggestions about what I could try but will ask first “do you like...?” 

So why the long ramble? Well lots of reasons - firstly because I’m grateful to have a superstar team. This is so important. If you can’t talk to your team honestly then you’re not receiving the treatment you should. Hiding things doesn’t help either party. 

Secondly because I hope they know how grateful we are to have them. Even during the past twelve months I’ve felt like I can call them to discuss problems. Yea like everyone they’re overstretched abs yea at times it’s been a longer wait but in the main I’ve still received care as I’ve done previously. 

Thirdly because I want other people to know it is possible to feel happy in your team and if you’re not it’s ok to ask to explore other options. Yes you’ll meet people along the way who are difficult, I have and still do. Some of them I’ve chosen not to mention just because I’m really not giving them room in my blog (or brain) 

So I suppose in some ways this is a thank you post. In others it’s a “heads up” if you need it. ❤️

Decisions decisions decisions

So originally today I was planning something long and reflective BUT it’s been a difficult day BM wise and the perfect opportunity to demonstrate the full time commitment needed to manage. I mean let’s think about daily decisions we make. What to wear? What to eat? When to eat? Whether to go out or not? Imagine adding a whole host of other decisions onto that! Today I’m talking about those decisions. 

So first off the images above, not ones you generally want to see. 

To make it really easy I’m going to lay my day out showing diabetes decisions from 9pm last night to 9pm tonight. 

So 2100 my BM was 11.4 and rising slowly (target around 7) questions - was tea insulin right? Should I give CD (correction dose) or increase basal? Wait it out an hour? Is pump still working ok? Early night out the window “wait and watch” time Decision was a 20% increase for 30mins and to wait and watch  

2200 An hour later were at BM 13.1 and steady. Straight line should suggest insulin is working. Wait and see? Just eaten so had 5.2 u worked out exactly (inclusive if recommended CD worked out by pod handset) 

2305 An hour after that there’s only a slight increase(13.9) ...wait or treat, it’s been two hours? 

Increased basal to 30% for an hour

0023 BM now 12.4 so seems to be going down let’s leave it and sleep? 

Pod recommends another CD decide to take half the CD

0330 BM 12.8 It’s held rather than dropped...treat with CD? Or increase temp basal? 

Pod recommends a CD of 3.75 so take that and try to settle again. 

0747 BM 4.2 As a bm that’s a little low for me waking up but at least it’s “in the green” quick sugar hit or wait it out? Take meds for other condition anyway so need to wait half and hour now...

Temp basal decrease by 15% for 30 mins

0813 BM 3.8 and in the red! Should’ve had sugar hot first. Treat with top of luck add bottle? 

Lucozade taken 

0942 BM 8.6 back in the green. Hopefully it’ll stay there comfortably. 

1056 BM 7.1 so decide to eat breakfast. 24g of carbs 

Pod works out 3.15 bolus needed 

Thank goodness it does some of the maths these days!

1157 BM 11.1 and rising slowly...did I wait long enough for prebolus? Set running out? 

Temporary increase to 15% for 30 minutes

1351 - forgot it’s POD change day - nightmare! This means 4 u straight in to stop rise then a temp basal on new pod once in. Pod loaded and old one deactivated. New pod attached to outside of right arm. 

1358 BM 10.5 and steady. Little bit high? Treat? Cause? 

Pod works out no dose needed

1446 BM 9.2 lunch time so pod works out insulin.

4.95u given 

17.21 BM 15.7 no reason it should be! CD? Increased basal? BOTH? Set blocked? Running out? Getting sick? 

40% increase given for 30 mins. 

1747 BM 18.1 and I’m feeling pretty grim...pen injection? Arrow indicates rapid rise...wait it out? 

Increase continued and 3u in.

1800 BM Still rising temporary basal having no impact. 

Remove pod and replace after looking at patterns. Arm bleeds enough to suggest pump partial blockage. Pod deactivated and new one set up on back left hip, Temporary increase and CD given. 

BM shows downward trend arrow. 8u prebolus given for tea.   

1835 BM 15.8 but steady...wait? 

Temporary increase has just finished so decide to wait and watch. 

1912 BM 14.8 steady so waiting it out seems a good idea...? Another small bolus? 

Downward arrow suggests waiting 

1958 BM 9.6 and dropping rapidly! Turn off? Lucozade? Biscuits? Eat the contents of the fridge? 

Small dose of lucozade to reduce dropping time

2011 and it’s 7.2 still dropping rapidly... where will it stop? Why is this happening? 

Finished the lucozade

2100 BM 4.3 and now dropping slowly...lucozade? Turn off? 

Two digestives eaten. 

Going to be another long night 

So why is all, this relevant?  Well partially because it demonstrates the constant need to be thinking about decisions that affect those blood sugars. It’s a 24 hour job. Therefore 21 additional decisions demonstrated in one day. Each one important on its own but also as part of the bigger picture. Some days yes there are fewer but equally some days there are more! 

Can you for a minute imagine not being tired after all this? Exhausted in fact. That’s all before a normal day has even started. So please next time you tel, me I look tired or need a good nights sleep think about this...I probably desperately do but the chances of getting it are slim. And I’ve probably not decided what I’m having for tea tomorrow yet either...

 

36 years...

 So this week is the marks my 36th anniversary with my diabetes. I can’t say it’s been easy, interesting yes easy no.

The best way to describe it is like having a full time job that you didn’t apply for, don’t feel qualified for and can’t walk away from. But if you can’t walk away then embrace it you must. 

For my children it will be completely normal. In fact my youngest actively searches people for a pod or sensor when he meets them. My eldest is perfectly happy explaining to people about “the mummy juice” (pretty sure for the first week of him getting mummy juice nursery thought I was an alcoholic) 

In those years I’ve done an awful lot I’m proud of. I’ve encountered an awful lot I’m appalled by. I’ve seen some huge changes in treatment and technology. I’ve met absolute superstars and some really dreadful people, bullies almost. As I say it’s been interesting. 

I decided this year I’d do a post for seven days to mark the week as when I was diagnosed you didn’t get a specific date more a week of information thrown at you! 

So this will be post number one. If you don’t want to read them I’m ok with that. If you do fantastic, I hope you enjoy and maybe even learn something. 

Just for fun here’s my littlest with his hand on the pod. (And O just because ❤️)