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 ❤️) 

Diabetes Week 2020 - Roundup

Diabetes Week 2020 - Round Up 

So the end of another week, in lockdown. I’ve deliberately not mentioned lockdown as it’s a delicate subject. So instead my weekly round up. 

 💙 I’ve done 39 bolus since Monday

💙 My ratio is 48% Basal to 52% Bolus

💙 My total daily dose of insulin is 47.750 units 

💙 I’ve arm scanned 232 times 

💙 33 scans a day

💙 My estimated HbA1c is 6.7% 

💙 I’ve done 40 BMs

 💙 I’ve done two set changes 

💙 Changed two libre sensors (first one failed and bruised😢) 

❤️ I’ve painted fences

❤️ Baked

❤️ Planted seeds 

❤️ Attempted to teach the kids to ride space hoppers

❤️ Drawn pictures 

❤️ Made lots of meals 

❤️ Thrown parachute army men out of the windows

❤️ Recorded family birthday messages

❤️ Cleaned

❤️ Wrestled the dog

❤️ Cut my husband and children’s  hair 🤦‍♀️

The point is #TheBigPicture is my t1 is part of me but not all of me 💙

Diabetes Week 2020 - Community

Community

In our community you see a pump or libre sensor and straight away gravitate towards that person...

BUT...

This week, as my posts suggest, has been Diabetes week 2020. This week Diabetes UK have worked hard to make sure that even at this difficult time awareness and hope has been spread. For lots of people this has been via social media. In the north of England they’ve even started a page which allows members to chat, share information and stories and generally support each other. 

 

This was posted to the North page and offers some interesting information https://www.facebook.com/1808443829390476/posts/2635628633338654/

This made me think about the communities that help me. I have my family community who support me regularly with my diabetes, and my t1 friends. I also have an amazing diabetes team who I think are the most amazing people. They go above and beyond regularly but even during the recent difficulties have continued to support me amazingly. 

Last year,  I had the opportunity to experience events with the wider diabetic community. I was reluctant to do this at first but i found them to be truly enjoyable experiences. 

Firstly I attended a Change Lab which focused on emotional health and diabetes. This was reflective as it started off with those of us with diabetes writing a reflective journey, (I’m typing this as a separate post). 

This lab was a collaboration of DUK, patients and many other professionals. It’s also one that will hopefully see some changes for the better in our communities. 

 

Following the change lab I was invited to the St Helens Diabetes User Group meetings. This group looks for opportunities to improve care and communication in our local area and again it’s a great opportunity to meet different people.  

 

The communities that I’ve experienced in relation to both my care and local developments/initiatives are so important as they make us realise that we’re not alone and together we can make the best of this situation. 

Diabetes week 2020 - The Tech Journey

The Tech Journey

I was diagnosed with type one diabetes in February of 1985. 

My friend once described it as a life marathon, she was probably spot on. But in that time I’ve seen so many changes that I thought maybe it would be interesting  to share some of them. 

When I was first diagnosed glass syringes 💉 we’re still being used but my parents had the option to buy smaller disposable syringes. At the time that’s what they did.

 They were also given test strips which involved you taking blood from a finger/heel/toe and putting on the strip with a tissue. After thirty seconds you wiped it with a clean tissue and compared it to the scale on the side for a number. 

(Something similar to these)

Technology has come such a long way in that time but the concept or aim has stayed the same. 

My beautiful assistant has prepared videos to show some of the kit we used and what we use today. 

When I was about three we were given an injection insertion device to help me do my own injections. This is shown in the video above and it still makes me jump every time it fires. It’s so loud that my assistant won’t press the button. I was slightly younger than him when we got it. 

Over the years the injection devices got smaller and easier to use. They’re probably all still around somewhere but the first one is always around. Maybe a reminder in how far we’ve come. 

When I was almost 16 we moved onto insulin pens. Again shown in the video above. At the time I had two . One for background (long lasting insulin) which I injected twice a day 12 hours apart and one (a different colour on the instruction of my nurse) which I would inject with whenever I ate. This development introduced an element of freedom as I could eat things slightly more freely. 

The pens I used until 2008. In 2007 my consultant mentioned and insulin pump and to be honest I was reluctant to try it. In 2008 though I was injecting several times a day so I agreed to try it. My first pump was this one. When asked what colour I wanted I was told most people went for black as they’re easier to disguise. I chose blue “loud and proud”. 

This was a complete game changer. I could eat pretty much anything, alcohol (!) became manageable and cake, chocolate cake. Pizza which is a complete nightmare to break down was amazingly easy. We’d agreed with the team that I’d be able to remove it for holidays but when I went back there was no chance it was coming off! I loved it. 

The pumps are updated regularly as there’s always improvements being made. 

This is my most recent pump. It does lots and originally I had a hot pink one but it lost a fight with a swimming pool. This one can link to lots of other equipment like blood meters and sensors. The pump can if linked up suspended itself to help prevent low blood sugars and can warn of high sugars. 

This was really useful when I was pregnant as control needs to be much tighter during pregnancy. The pump as shown in the video can connect to the body via a range of cannulas so there is a choice for patients in respect of what kind of fitting they want on the set (needle left in or removed; self inserted or via an inserted device). The set on a pump is changed every three days and although it has its own complications it’s a massive difference to pens. 

This pump is where we are now with regards to insulin administration. 

Blood glucose monitors are used to ensure glucose are within range. As posted in previously being to high or to low has it’s own impacts. 

As shown above the original glucose test strips relied on a personal interpretation of the results. Since then lost of blood meters have been released and in the same style they are constantly improving. 

The video shows one of the earliest meters I had which I’ve still got. Unbelievably it still turns on. The idea was you pricked the finger still and wiped the blood away but then inserted it into the machine which would determine what the blood glucose reading was. Over the years there was a range of meters that we used and there’s some of them in the image below.

The biggest change with the meters was that the coded side of the stick went into the machine and the blood went onto the stick AFTER it was inserted. 

During pregnancy I was given guardian sensors that read blood regularly to improve control. These are amazing although sometimes painful to insert. But I loved them. 

Following pregnancy I had to go back to finger pricking alone, which was hard. 

Then I was asked to try freestyle libre as I was BMing so frequently. 

GAME CHANGER!

This tiny little disc is inserted into your arm and you can scan it with either a reader or an enabled iPhone. It gives you a reading immediately. As you can see in the video it comes already loaded onto the inserter and you just apply it to arm and push the gun down. The one in the photo and video is a failed one which is waiting to be returned not a used one as I said 🤦‍♀️

 

Again they come with challenges. This is the site of one that had failed. It’ll be bruised and sore for a week ish and was quite bloody BUT as soon as it was out I put a new one in as I wouldn’t want to be without it. 

Recently at a Diabetes Change Lab a lady introduced me to a Miao Miao. That’s the device that sits over the top of my sensor. It’s bit licensed in this country so has to be purchased but they can provide a regular blood sugar reading and act as a co start glucose monitoring system like the  sensor used in pregnancy. They need calibration so finger pricks are still necessary but no where near as many. They Can alert to a rapidly changing glucose level when linked to an iPhone and also have the ability to send a reading to a smart watch so a reading can be seen without equipment. 

So that’s my tech journey! I’m sure they’ll be more changes in the future but it’s amazing to see how far we’ve come and I’ve not even mentioned finger prickers (although I’m pretty sure my dad would still prefer a heel)  😂