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)  😂

Diabetes week 2020 - Thursday Ramblings...

So today’s post was planned. I was going to do ‘tech talk’. Looking at developments from when I was diagnosed to today. However I wanted to do it with some video links which I haven’t had time to finish. So then after some chatting with others I thought I’d do some ‘practical stuff’. Maybe do a sensor and set change demo BUT tonight’s turned into a bit of a bloody situation so I’ve abandoned that too. So instead I thought I’d ramble and see where I end up. 🤷‍♀️

I’ve had lots of experiences with my diabetes. It’s lead me to meet some amazing people, some of them now my closest friends. 

This amazing lady is  my go to in an emergency, she always knows the right way to sort me out. Whether it’s food, tea or talk she knows the answer. She also knows whether I need a good telling off or someone to listen and smile. Without my diabetes I wouldn’t have met her. The silver lining to a normally stormy cloud ☁️ Thank you for being you. 

My diabetes has landed me in some interesting predicaments and you would think the enhanced technology would make life easier...not always the case. I once terrified a lovely little old lady on Tesco car park. I jumped out of the car and went to run into the shop when I felt a funny sensation in my stomach. It appeared my pump wire had wrapped itself around my car wing mirror and I’d ripped it from my stomach. It must’ve be precariously placed as there was so much blood it was like a horror movie.

On another occasion I slammed the car door shut whilst Kevin planned on waiting in the car, as he went to pull away I realised the pump had got snagged and was still trapped in the door. I actually attempted for three a few seconds to jog alongside the car like a nutter. 

My pump has been washed several times. Not deliberately I should add. It’s Normally clipped on my belt and I have on more than one occasion managed to scoop it into the washing machine, shut the door and press the start button.  I then have to sit there and wait for the door to unlock, well I don’t but I know if I didn’t I’d probably forget it. I’ve also knocked  led it into the bath on several occasions. 

When I had my first pump fitted my dog decided he’d walk off with it in the middle of the night. In a very bizarre manner I ended up following him to the kitchen to retrieve it. 

Hypos are also an adventure. I’ve done so many random things when my BM is low. These random crazy things are not always my fault may I add. Once when I was in the car wash with mother Nulty I said oh no I’m hypo, she replied why don’t you get out and get something? It seemed like a good idea at the time. Fortunately i got a bit wet but not much else. 

The kids love a pre meal hypo. No matter how often I have to tell them to share if  mummy is having sugar we should all share. Although it’s not much to ask when they’ve been in training from birth to deal with it. 

Although life is easier if we smile and try and look for the silver linings I’ve frequently experienced bullying, discrimination and people who I feel should’ve been better. Last year I spent a lot of time reflecting for a DUK think lab and I have decided  to Write the reflection as a separate blog so go now I’ll just pop this here. 

💙 If that’s you ⬆️ no matter who you’ve lost 

it’s never to late to reach out and fix it 💙

Diabetes Week Day 3 - The emotional stuff...

The emotional stuff...

I’ve been diabetic for 35 years in February just gone. 

Based on rough numbers that’s 

💙49,000 finger pricks 

And

💙 30,000 injections 

With that in mind it’s interesting to think about other numbers, although estimating them is impossible! How many hospital appointments? How many diabetes related decisions a day? How many hypos? How many missed events? Lost minutes? Money spent on sugar?

It’s like a full time job. Only it has no holidays and is unpaid and there is no guarantee of performance related results. Which I suppose is why we all occasionally encounter diabetes’s distress, burnout, fatigue...whatever term it is, we get sick of it. It’s the emotional response to having to cope with something huge in addition to day to day life. In some instances it becomes so severe that it starts to become physical. People disengage with care, take risks and stop attending appointments. 

In many cases this distress can be triggered by the response of others to the condition. The response of others can be the most difficult to overcome.  

Recently in a guide there was a list of questions that people with diabetes should be asked at or around diagnosis. I don’t ever remember being asked any of them. Maybe because I’ve had it so long, but some days I think I know how I’d answer each question then other days the answer is totally different! 

Example related to other people - How do you feel about telling others you have diabetes?

 Most days I’m a ‘loud and proud’ kind of person. I’m as happy to talk about it as I am talking about my hair colour or my nail polish. But every so often a trigger memory appears and I start thinking hmmm maybe I don’t say anything this time. Even though I know hiding it will be impossible for long. 

So if you’re reading this and are feeling diabetes distress talk to someone, anyone you trust. It helps. I’m lucky my DSN team are family these days. I have an amazing relationship with them and trust them. I also have my mum who knows everything. If you’re reading this and you know someone who you think is in distress ask them, as gently as possible. Be open to the no, I’m fine and no nothings wrong comments. Ask them is there anything they want to share. Be willing to sit in silence if they need to think. Accept it if they cry or become angry. Don’t think you have all the answers but suggest options. Don’t feel under pressure to fix them immediately. 

#team #TheBigPicture #missingmatt

❤️already met the rest of the team yesterday ❤️

Diabetes Week 2020 - The Hypo

Hypo Vs Hyper 

So I thought maybe after referencing fluctuating BMs yesterday it would be useful to address what the Lows & Highs are like, how they feel and the impact they have. 

Hypo - when a BM is lower than it should be. Now there are set guidelines for this but I think it’s important that I point out that it’s often important to set our own guidelines. For me a BM lower than 5 is hypo as I start to feel awful at this number. Hypos for me are horrible because you need a sugar or glucose intake. The glucose gel and tablets make me gag they’re awful (in my opinion). I also struggle with sweets as I don’t like them. The general go to therefore is Coke or Lucozade. The next problem is how much? Again their are guidelines on how much but measuring out how much you need when you’re low is a nightmare so often it’s a guess. When you’ve had your dose you then have to wait it out to see if it comes up or whether you need a second dose. I find ‘the wait’ really hard. I often react to quickly or over react and then end up in the other direction. 

The feeling of a hypo is varied. Quite often it’s like trying to emotionally and mentally wade through fog to the right destination. I know what I should be doing and how but it sits just on the edge of my mind. Sometimes it’s like a dreadful hangover, I’m confused, have a splitting headache and just want to sleep. 

The hypers are the other way - too high. Again there are guidelines for this but I think people experience their own high levels. At present over 12 and I feel high. This needs correcting. At this side we use insulin to reduce the BM and patients are given a correction dose by their own medical team. 

Being Hyper is different to hypo. It makes you confused, thirsty needing the bathroom every ten minutes! Can cause headaches, sickness and tiredness. The scariest part about being hyper is the potential for ketones developing. They make everything that bit more serious. 

The thing that really sucks about both of these is the impact they have. When they occur quite often we have to pause life. We need to BM; treat and allow the treatment to take effect. No matter what you might be doing. This can be a disaster in the workplace. People are less understanding (more about that later). But even in day to day life it can be hard. We frequently have to pause games to deal with mummy’s numbers. Although we have an extra warning system as my furry friend is ankk ok e to sniff a hypo. 

I’m also lucky, my team have pretty much grown up with it. To them pausing our football game for mummy juice is completely normal. They even come for a cuddle whilst we wait for movement. I’m lucky as I have the best team and because hypos/hypers can and do come out of nowhere. 

My other current ‘live in’ team member took the photo 

Probably some bits I’ve missed but that’s the gist. 

Diabetes Week 2020 - The Big Picture

The Big Picture

The more I think about that phrase The Big Picture’ the more I wonder what we incorporate into it? I mean my diabetes manages to wander its way into every area of my life, it’s like a tiny person that I carry around. It requires frequent attention and to be honest can go from behaving like a well mannered and self respecting adult to a toddler whose been handed the wrong cup in seconds. So today I thought I’d let you see my daily diabetes drills. 

Let’s start at midnight - the beginning (technically) of a brand new day. If I’m lucky I’m snoozing but  throughout the night my lovely Miao Miao is tracking my blood sugars. It traces whether they’re going up or down and how quickly they’re changing. Should there be a sudden change it if they dip below 5 my phone starts singing.  That’s why if you ring or text me in the night I’ll probably see it. I don’t guarantee a reply but I’ll see it. 

At about 3am I’ll wake and scan my arm yo update my libre sensor. This has to be done frequently and at least eight hourly to update the graph otherwise there’s an interruption in data. When I wake up at 7am I scan my arm again, check the data from my Miao Miao is correct via finger prick and that its calibrated and passing to my watch correctly. 

Breakfast - quick pre meal arm scan, eat, carb count, work out insulin based on BM numbers and carb ratio. Put it in the pump, internal debate about what kind of bolus will suit the day, press the button. 

1030am pump beeps to remind me to arm scan, quick prayer that it’s in the green lines.

Lunchtime - on a prepared day I have a good lunch which I’ve Pre carb counted for so I do a quick arm scan and eat then bolus and I’m done. Most days I grab whatever I can in between juggling everything else, work out the carbs roughly, scan and go for a roundabout bolus hoping I’m in the right area with type of bolus. 

Mid afternoon quick arm scan on a couple of occasions, if it’s in the lines I carry on if it’s rising Or falling rapidly I get a lovely arrow just to confirm the urgency. If the arrow pops up quick check is necessary with a finger prick check. 

Tea time same as breakfast and lunch. Arm scan, eat, bolus, internal debate about corrections and bolus options. 

Bed, quick scan, debate whether any adjustments are needed, make adjustments. Sleep. 

Wake at midnight panicking to scan arm. 

Repeat. 

Now this seems ok, right? Quite straight forward? But additionally every 14 days I have to change libre sensor in arm. Every three days my pump needs filling and the set and cannula need changing. BM kit needs charging frequently. Back up meds need ordering and storing appropriately. And the pump battery is only ever flat as you’re about to close your eyes to sleep. 

The graphs - 

 

 

So these are the beautiful creations from the libre. They very kindly highlight lows in red again just to confirm the urgency of the situation. 

So what causes rapid changes? 

Let’s just make a list 

💙Exercise

💙Wrong bolus

💙Wrong food

💙Stress

💙Missed meals 

💙Missed bolus

💙Hormones

💙Medication 

💙Illness

So there it is, my diabetes day. 

A dear friend once featured in a video about the “little black bag” which is something diabetics couldn’t have because of all the supplies we had. As the tech gets smaller and more efficient I do wonder if the “emotional bag” is getting bigger...diabetes and emotional health, a story for another day 💙

Diabetes Week 2020 - Introduction

     

Up until 2017 there was an event organised to coincide with diabetes week which encouraged people to write about their experiences with the condition and share it via social media channels. I’m not sure why it ended as i was otherwise engaged in 2018 but I noticed last year that it had gone.

 This year I thought even though effectively I’m now just writing my own blog for me and even though it may reach fewer people without the group approach it may well still be worthwhile. During my pondering Diabetes UK launched their diabetes week theme

Diabetes Week 2020

Everyone’s experience of diabetes is different, but we’re united by a common goal – building a better future. Help us paint #TheBigPicture this Diabetes Week. The triumphs, the setbacks, the daily routines and unexpected turns.

https://www.diabetes.org.uk/get_involved/diabetes-week 

With this in mind I thought I’d start with a weeks work of sharing and see where it leads too. I’ve no themes or idea of direction for each day so if you’ve an interest, question or burning idea please throw it my way. Additionally sharing is the best way to get information out there so if you feel inclined to do so, amazing . 

I’m going to use this thread as an introduction thread for my new start so I’ll hopefully have a new post finished for sharing later on.         (Still pondering which direction to go in first) 

#myteam #TheBigPicture #Family