The Tangerine Diabetic

The Perfect(ish) Real-life Metaphor - A Hypo and a Walk

2025-03-31T23:35:00.010+01:00

Hello There!

Before putting finger to keyboard I asked around to check if blogs are still a thing in a world of reels, stories, pods and 'Toks. The feedback was that yes, apparently blogs are not pining for the fjords and are definitely not ex-blogs. So here goes. Oh, and for any new readers, grab a drink, I tend to meander a bit but hopefully there's an arc of a thread in there somewhere.

Today we have a tale of two adventures. One seemingly a lot simpler and safer than the other but, as it turned out, just as adventurous.

On a lovely Sunday in March (a.k.a. yesterday as I type this); the rest of the family were elsewhere and I decided it was time to complete a walk I'd been hoping to do for a long time. Roughly based on this one from Paul Sharkey. Thank you Paul, great route.

All proper prep was done. Route tracked on Ordnance Survey app, a paper map in the rucksack. Weather forecast predicted strong winds on the higher levels so the bag included trousers, hat and gloves along with a windproof jacket just in case. Food-wise, I had my go-to walking lunch: a Tesco meal deal along with an apple, a filled soft flask, and plenty of Haribo and Kendal Mint Cake. After a recent cash-only café encounter, I made sure to bring some change. A bit like reading blogs, it turns out, old-school money is still handy outside of town!

Fully prepped, me and the dog load the car and set off to Far Sawrey Village Hall.

Now let's rewind another 24 hours to Saturday evening. It had been a busy day and Maggie needed a walk. Although she always likes to stretch her legs properly, I knew tomorrow was promising 10 uppy-downy miles so I was happy to make it a short one after hers and my tea. My food was some lovely left-over filled potatoes from the night before and a small bowl of apple crumble and custard. As always with my carb-counting it was a bit sketchy and I bolused away.* I'm fortunate to have some of the most advanced diabetes kit attached to me 24/7. This means my inputs are a lot more limited than they used to be and my opportunities to mess up my continual science experiment are also reduced. At this point my, always-flaky short-term memory didn't remember that a walk was planned for after I'd eaten. If it had I probably would have either reduced the insulin significantly or not bolused until I got back. For those who like to watch TV dramas constantly guessing what's going to happen next, you're probably thinking along the right lines.

*Tech diabetes term - a bolus is a dose of short-acting insulin that is used to counteract the carbohydrates in food to prevent blood sugars rising to dangerous levels. Happy to give anyone a Diabetes 101 if this new to you; drop me a line

Back to the walk.

The day was looking wonderful. After just over a mile we dropped down towards Lake Windermere.

It being Mothering Sunday, there were lots of families out and about and a nice atmosphere was in the air. Once we got to the shoreline Maggie continuously bobbed in and out of the lake hoping I'd throw something in for her to chase. Her excitement reached a peak when she found a tennis ball but my refusal to throw it meant she dropped it eventually. Also today I was trying out some new trail running trainers. So occasionally the walk turned into a jog to lift the pace a little. Quite enjoyed these parts and it helped to give some added variety to the outing.

After a while we went up from the lake and looped around Wray Castle. Stopped for a lovely coffee and enjoyed the view from the terrace. While there, entertainment was provided by mums being spoiled rotten on their special day with tired, hungry kids wanting to be anywhere else than in one of the most beautiful places in the world. It was a heart-warming sight. 😁

After the coffee we dropped down to the lakeside again where I repeatedly threw a stick into the lake for the hound to swim for and bring back while I munched on lunch. Everyone was happy.

Next was the climb up to Latterbarrow. An elevation change of 660ft in just over a mile. Now I'm not claiming it to be bigger than it was, but there was no running involved in this section. Actually that's a lie. I thought I'd give it a go but after about 20 metres I understood I like enjoying the view on the way up and to save my speed for the flat sections, or on the way down.

The summit was lovely. For the first time since I'd reached the side of the lake, my sweatshirt went back on. It was definitely not hat or gloves worthy but there was a small breeze to give a slight chill in the air. There was one other couple on the top who left soon after we arrived. Reward for the peak was an apple and a smug nod that I was doing well

The descent down from here was a little less obvious but the paths were fairly clear so I wasn't too concerned with the map checking. Though occasional phone glimpses ensured I was going the right way.

Now's a good time to return to Saturday evening.

It was starting to get dark when we left. For this reason we kept off the canal and headed over the bridge down the hill. Street lights aplenty and, as it's a residential area, there's a park where Maggie can have a quick run off-lead. We're now getting towards the furthest point in the walk.

As we descended my original planned route went straight on then right. The map also gave an option of right then left to get me to the same opposite point of a virtual rectangle. Follow the route Dave. Onward!

Soon after this point my 'onward' should have been 'stop and check the map'. As the path wasn't the most obvious at that point I had missed the Right Turn Clyde. I proceeded on, although I did think the path more resembled a stream than a formal route now. And then I checked the map.

Meanwhile back on the dog walk I could start to feel my bloods drop. About two thirds of a mile from home, insulin was on board but I knew I had three small bags of Haribo in my pocket. One was opened and consumed in a single gulp. So I'm in a slightly tricky situation but good planning has meant I've got a way out safely. Erm, we'll come back to that.

The terrain now was obviously not an approved route. So it was time to decide the best course of action. Retrace steps to find the missed turn and crack on. Or make a sharp right, up a gulley, over some felled trees and towards where I should have been by now. It won't be that hard. And the slope up isn't that steep.

Approaching the top of the rise I can hear Laura in my head. Asking why we've carried on when the most sensible thing to do was admit our mistake and go backwards? But onwards. GPS is telling me I'm only about 50 metres from the correct path. You'll be OK Dave. It can be that hard.

As I descend on the path at the far end of the small park, co-ordination of limbs is starting to go a little. Not quite at dad-dancing stage yet but it's getting close. Remembering the small bags of sweets in my coat pocket I fish around for the second of them as I reach the bottom of a small slope. However, the pocket also contains one glove, the other is on my left hand, and a stream of rapidly-untangling dog poop bags. Eventually one bag, of the sweetie variety, is extracted and I start to try to open it. This is getting harder to co-ordinate but I manage it eventually.

Meanwhile 18 hours later, at the top of the slope the terrain is changing. Along with felled trees, we now have bramble and numerous very low hanging branches. Now I'm not saying this is comparable to Rat Jaw, and that I can be put alongside Jasmin Paris, Damien Hall and John Kelly, but my legs are getting absolutely shredded. (*If the references in the last sentence make absolutely no sense to you, I suggest you read/watch about the human machines that attempt the madness that is The Barkley Marathons and the massive achievement by Jasmin last year.)

To add to the Saturday evening picture, don't forget the reason I was walking in the first place. I've got the lead and somehow my left hand has a vice like grip on it. To make life easier I try to clip it to my belt, which is a 2 second task, but that's just not achievable so it stays in my hand.

Although there's a lot of fuzz going on, I know that trying to get down on the ground will be my safest option. Legs are no longer taking me in any meaningful direction and, in reality, I've got no idea which way I should try to go anyway, even though I've walked these streets hundreds of times. Now if you've been fortunate enough never to experience a bad hypo, it's hard to explain what it's like. A comparison is blind drunkeness but with even less co-ordination. And the visuals are very similar too; which we'll come to in a second. So I wanted to get sat on the ground and wait for the sugar to kick in. Even in this state I know it will. Well more hoping than knowing, but the wish is there. However once I'm on the ground my limbs are still flying in all directions so that's not working either. Hypo-brain is still in overdrive, so maybe if I start to walk, it will be OK?

On the trail, or off the trail I should say, I can't see the path but I sense I must be close. A clue to this is a family chatting as they stroll through. Enjoying their family day and no complaining going on either. But now I don't want to move until they are well past. I'm not sure I would appear at my finest emerging from the undergrowth. Think Tom Hanks in Castaway. So I maintain my position for a minute hoping to not scare or worry anyone.

To prove my point, starting to walk didn't turn out so well the night before. It was now fairly dark and not many people around. However, just as I topple onto some shrubbery in someone's front garden, a lady walks past with her dog. To describe her would be impossible, as although it was a well lit area my vision was not great. I think her hair colour matched her dog's but that could be complete fiction. She nervously asked if I was OK. Obviously I was unable to stand, or indeed sit, and yet I still just said "Yeah, I'm OK" as if climbing out of a bush with no muscle control was perfectly normal. I am confident her mind was wondering why a drunk man was walking his dog in this quiet suburb late at night and who'd trusted the dog with him. It wasn't an unreasonable question to someone without the full facts.

The walkers had now passed, out of earshot, and a check of the map confirmed I just need to go as straight as I can and I would soon be on the correct path again. To be fair to Maggie she'd also foraged her way through the undergrowth and hadn't abandoned me. There's a pattern here. Bless her! While this is going on, there are obvious regrets about choices made. But throwing realisation of stupidity onto the physical pain was helping no-one.

I slowly made my way out of the trees and space to walk freely was available again. A quick check around to make sure I'd emerged unseen, and we were off at speed.

As an illustration of both direction and slow pace I now present my Garmin data for that section of the walk.

By some miracle, comprehension was starting to return slowly. The fast acting carbs were obviously kicking in and I emerged onto a road that looked more like one I should be on to get home. I still didn't have full understanding of where I was, but there was enough recognition to know I was going in the right direction. I was also able to open the third and final small packet of Mini Strawbs. Better late than never I suppose. And then the brain starts to process what has happened and the guilt and self-judgement arrives by the bucket load. As I got to within a hundred metres of home everything was clicking into place and the sense of vulnerability arrived like a dumper truck. The final walk home went as quickly as it could. The brain starts to work at pace now. As well as the complete loss of dignity with someone who I don't think I know, I'm also missing a glove; I like those gloves!

Coming home for the final three miles was a breeze. Mostly downhill with very obvious paths to follow.

Speed picked up again and we made it to a celebratory cider with 10 miles done in 3hrs 10 mins. A chance to refresh and admire the scars of victory. (Stats on Strava if you're into that kind of thing)

So what was learnt from the two errors within 18 hours?

1: Even with the best prep, you'll still find a way to mess up. It's inevitable. Accept it.

2: Don't bolus for food before a relatively low carb meal just before a walk. Let the 780G do the correcting and stay safe.

3: If you've gone in the wrong direction, turn around and find the easiest way back to the correct route.

4: If someone asks if you're OK, they are probably trying to be kind and not judging. Be honest and ask for help.

The more important question is whether these learning opportunities will be heeded and followed. The answer to that is I'm honestly not sure. Probably, but until I'm in those situations again who knows.

Before I finish off, thank you for getting this far. You've done well! I know it must have felt like climbing through a bramble with no obvious directions at times!

I hope I've managed to put into words what a pretty bad low blood sugar feels like for me. And if you also have a dodgy pancreas, I hope you think I've done a good job of it too.

So, yes, blogs still exist. And apparently, so do I, despite my best attempts! Maybe I'll write again before another five years pass. Or maybe I'll just stick to Instagram and dog pics. Either way, see you out there.

Derwent Water Splashes

2024-05-13T10:28:00.007+01:00

For those that have read my writing before, , for those that haven’t, you might want to leave now as I tend to witter and ramble with only occasionally having a thread and consistent narrative.

Normally I’m very diabetes focussed but today it will be mainly about water and walking. Do not panic though, I’ll throw in a bad diabetes decision in there too to tenuously maintain my writing theme.

A plan formed around Wednesday of last week. Laura and Martha were off for a hair colouring session and the weather forecast was looking peachy. Maggie the mutt gave a perfect excuse to get her out into the Lake District for the first time. As the forecast was getting drier and hotter my plans shifted from a hill climb to looking for a lake based route where lots of jumping in the water to keep cool could happen. Just to be clear it would be Maggie splashing around and not me. Buttermere, Crummick Water and Ennerdale Water were all good options. However, Derwent Water ticked lots of boxes. It has a circular route of about 10 miles but also has the Keswick Launch boat that nips across the Water at various points. This meant if either of our sets of legs got tired, or it got too hot, we could jump aboard and get a lift back to the start.

Early start meant early to bed. Then the phone vibrated with an Aurora Watch alert. So obviously I climbed out of bed and went up to the highest window in the house to look out and see if the aurora borealis was visible. And yep, it distracted me for half an hour with some impressive colours that were massively enhanced by my phone’s camera.

Anyway, back to bed and the alarm was set for 6.15 along with a reminder to set a temporary target (basal) on the insulin pump. See, I told you there’d be occasional diabetes mentions! The early start was planned to avoid the forecast heat of the afternoon sun and the inevitable traffic gridlock that would appear later in the day.

The alarm went off, obviously, and after doing as told by the reminder, and a quick breakfast, I shoved some* food in my bag and put a tired Maggie in the back of the car.

The drive up to Keswick was enjoyable on the eyes. Coming over Dunmail Raise there were a bunch of walkers coming the way. The lanyards suggested an organised event and yes it was the Keswick to Barrow walk I did with my sisters 12 years ago. And, yep, I wrote about it here.

We parked at the Rugby Club which was a comparative bargain at £5 for all day and supported a local business directly.

Setting off we went off clockwise aiming to stay as close to the shore as possible for lots of splashing fun. After passing the car park by the Theatre By The Lake, Maggie got her first taste of Derwent Water and was as happy as, well, a dog in water. At this point the thought of fuel popped into my mind and I had half a meal deal chicken Caesar wrap. No insulin was taken as I knew the energy used would cover the carbs.

Now normally I’m marching off on runs and trying to beat, admittedly slow, times and deadlines. Today however I tried to slow it down a little and let Maggie dictate the pace. Unfortunately for me her pace is normally zoomy. The fellow walkers at that time of day were a mixed bunch but everyone I had a quick chat to with agreed it was better to be out earlier to enjoy the cooler sun.

After a while the shoreline narrowed. After standing for a little time to wonder if we’d be able to get through without going up to the road, our answer appeared in shorts and running vest coming the other way. His feet looked fairly dry so we cracked on. Some great views across the water at this point and we watched some rowers have an early morning workout.

After a bit of scrambling we made it around to a point before Lowcrag Wood. Here there didn’t appear to be any other option than go to a path on the other side of the road through some woods. So we crossed and carried on. Maggie was let off the lead again in here but after breaking the trust and nearly venturing onto the road, the lead was clicked back on.

Up ahead was a ‘Private No Entry’ sign that signified a choice to make. Take a gamble and go left following a path that doesn’t appear to loop back, but goes to the Lodore Falls, or go onto the road and follow that for a a third of a mile to rejoin the path around the lake.

Obviously we took the gamble. We went up to the falls and at this point could look down on the very lovely Lodore Falls Hotel.

What I could also see were even more ‘Hotel Guests Only’ signs. Without going rogue and strolling through the people enjoying their find breakfasts outside there was no option than to a mini retrace.

So back to the road it was. This was the most awkward session but the road was quiet and it was only about 500m so not too stressful.

Next was a return the close to the lake. We’d reached the bottom end so after crossing a footbridge I took a rest, enjoyed the view and wolfed down the second half of my wrap and a bag of salt and vinegar McCoys. Up until now I hadn’t done an insulin bolus and numbers were staying well within range. I didn’t add any Fiasp here either as I knew my pace meant carbs were being used fairly consistently. I’d also had a few wine gums before then but not many.

A few snacks for Maggie here too, along with some water in a small metal bowl I’d brought along. As is normal, she had a decent few slurps and then ran off with the bowl in her mouth hoping I’ll run after her to join in her game.

After a distracted retrieval we started up the west side of Derwent Water. By now it was about 10am and the day was starting to warm up. Because of this we kept in the welcome shade of the woods. However we also took some breaks on the stony shore with others enjoying the sun at the same time.

* <-- Yeah, that asterisk earlier did mean something! It was also here that the absence of the bag of dried mango was noted. My food packing at 06:30 didn’t appear to be perfect. Hey ho; mini grumble to myself and crack on.

As we moved up, my eyes went left to look at heights of Cat Bells and a steady stream of walkers making their way up. I agreed with the dog that staying low was definitely the easiest and coolest option.

The number of walkers around us was steadily increasing as we passed Hawse End and Maggie found lots of other dogs to play with. Unfortunately for her this is where we said goodbye to the water for quite a while. On the plus side there was a lot of shade to keep cool.

As we made our way back to Keswick, passing through Portinscale I stopped at a coffee van called Harry’s Bean Machine. Harry was a really friendly chap who supplied me with a tasty latte and a delicious luxury caramel slice. Highly recommended if you’re passing.

(And this is where the wheels fell a little off my diabetes van. Again I didn’t bolus but about 15 minutes later I was guessing I should have, with a reading of 9.9 and a vertical up arrow. The sensible decision would be to ignore it and let the tech do the job. However a little heat induced tiredness and assumption that I knew better led me to rage bolus with a guesstimate of the carbs in the caramel slice. Inevitably 20 minutes later I was dropping like a stone and fixing that with wine gums and a prayer. Thankfully calm was restored before the drive home.)

Well nourished, we cracked on and finally arrived back at the rugby club car park. It was a lot busier now and I was very grateful for the peace of the early start.

As it was so hot though, and the dog had walked so far, a reward of a dip in the Water was needed again. We did one final loop down to the edge and a few stick throws in got her swimming and fetching in the cool water. Everyone was happy.

A route map is provided by Keswick.org but I left my printed version at home along with the mango. Maybe that’s karma though as the orientation of the map with it running south to north from top to bottom is still messing with my head.

Driving home Maggie slept all the way and we had a small degree of smugness watching the cars queueing north while we whizzed back down to north Lancashire.

It was a great morning by the water and I’d thoroughly recommend it as a low level walk that still had plenty of variety. For a diabetes perspective it went well and lessons were relearned about trusting the tech over instinct.

Stigma - A look in the mirror

2022-09-06T09:06:00.005+01:00

(metaphorical photo 1 - Munich Olympic Park - an Olympics has many different events and a lot have very different skills needed)

So last time I tapped away words on this blog I mentioned I'd be back with another post about stigma. I know it's been a while but it's been rattling around my head ever since and I thought it was about time I got some perspectives down.

Since I joined the world of the Diabetes Online Community back in 2010 my perspectives and thinking has evolved over time. I know it's not fashionable nowadays to be allowed to change opinion but my curtain parting from the 1990s suggests I'm not always at the front of high fashion.

For a big chunk of time since 2010 there was / is a noticeable feeling from the Type 1 diabetes community that those people with Type 2 diabetes should be viewed with a little bit of a sideways glance and not be invited into the 'proper' diabetes party. While I've always tried to push back a little bit on that I know that somewhere in my twitter history will be a comment about how outraged I am that a comedian made a joke about diabetes and how they were upsetting me as a T1 when it would be OK to poke fun at the T2s. *For 100% clarity this is view NOT appropriate and thanks to conversations and developed understanding my views have changed. Whether it's worth getting upset over a random comedian making a lazy joke is a completely different discussion.

The trip to Barcelona was fantastic as, for the 1st time that I could remember, Abbott had invited some people with Type 2 diabetes to be an integral part of the weekend and to talk about the work they are doing to improve the lives of those with T2 across Europe. With this came an admittance from some in the room that, as a community, we've not always been welcoming but how this was now changing. Looking around the room I could see a lot of nodding, smiling faces and this was a good thing. It was less about them and us and more about how we could share common experience to improve the lives for everyone about diabetes of all sorts.

Amazing, stigma, and pre-conceived ideas, were becoming overcome and we were such a positive welcoming family that no-one would feel excluded.

Well, almost but not quite.....

You know that bit about where I'm always rambling on about how I wear two hats now? One hat, let's say peaking running cap, as a person with diabetes and one, a nice warm wooly hat, as a parent of someone with diabetes? Well during the weekend a couple of times comments were made about 'parents' and how they just don't understand what it's like to have type 1 even though the 'parents' say it's tough. And these things were said pretty openly with knowing smiles from everyone and acceptance that what was being said was correct. There was a definite feeling that in the league table of pain involved in living with diabetes, the parents were in the bottom half of the table trying to avoid relegation into Division 2 where all, well maybe not all, the healthcare professionals lived.

(metaphorical photo 2 - Dresden hat sculpture - it's a hat, though it doesn't look that comfy or light)

Each time I heard a comment like this I thought back to the words of Wendy Smith from morning 1 who talked about stigma, bias, and not fully understanding a viewpoint until you've stood in those shoes. What made me most surprised was that a lot of the time the people saying these things were the ones who had said we needed to work to reduce stigma within our diabetes world. There, appeared to be, a distinct lack of understanding about the challenges having diabetes in the family brings.

Being a parent of a child (or grown-up offspring) with diabetes brings its own emotional and physical stress. I agree it's not the same as having to manage the diabetes monster yourself but that doesn't make it easy.

Remember all those warnings about feet dropping off and blindness that impacted you as you grew up, or are still impacting now? Well they heard the same things. In fact they probably heard them first and, nowadays, dived straight onto the internet to try and find out what the long-term impact of your condition would be. As we know the internet is rarely a reassuring place when looking for calm reassurance. The difference here is that although the 'parents' will help the person with the dodgy pancreas, ultimately, past a certain age anyway, they don't have direct control over what is injected, eaten or exercised. And that's chuffing hard. Every CGM alarm sets the mind whirring about immediate or long-term danger. And every period without alarms means that they just worry things are going wrong without the tech working.

This isn't a competition about who has it harder, it's an acknowledgement that it's tough for everyone. The challenges are completely different but the cause of the stress is the same and the enemy is common.

(metaphorical photo 3 - Concept cars in BMW Museum - looking at things from a different angle changes the lines seen. Getting a bit deep now)

I'm writing this on the train going to work and as I look down the carriage I have no idea what challenges my fellow travellers are going through either physically or mentally; although a lot of us do look like we could do with a double espresso to get us ready for the day ahead.

Once again I'll got back to a key subject of the Barcelona weekend. Stigma. We all need to accept we have them and look within to see if there's anything we can do to reduce the impact of that and make us understand the shoes that other people are wearing. And that includes me.

Above all, be considerate, be nice, and ask questions. In our part of the online world people generally like to share how they feel and what they experience. We can all learn by trying to find out more and breaking down those bridges.

PS. For those of you who don't know, last year after watching the London Marathon on the telly I thought it would be a great idea to enter the ballot and try and get a place for this year's event on 2nd October. And unfortunately for me I was successful! My training has mostly gone OK which you can see a summary of if you feel like donating on my JDRF sponsorship page - every Pound / Dollar / Euro / Shekel is gratefully received.

(photo 3 - no metaphor here, just me trying to stay sane on another long training run)

Barcelona! My mind started whirring....

2022-05-16T21:16:00.003+01:00

A couple of weeks ago the 15th International Conference on Advanced Technologies & Treatments for Diabetes was being held in Barcelona. For those who like a good acronym this is more commonly known as ATTD, for the hashtag lovers this was #ATTD2022. To coincide with this Abbott held its annual Diabetes Exchange (or dX) event in the same city, at the same time. This is an opportunity for diabetes bloggers and social media people from 9 countries across Europe to come together and discuss the important things going on in their countries and also share things that are important to them. A little strangely though we got nowhere near the conference. Although I did take some time outside of the Abbott event to meet some people who had been there which was very interesting.

Here comes the legal bit and the part the cynics amongst you will be interested in ….

Abbott paid for my Ryanair flights, transfers, hotel accommodation and most of the food and drink while I was attending the timetabled elements of the trip.

They do that to get my views and input but put absolutely no pressure on me about what to share or what angle to take. Whilst I feel fortunate to be able to go along I also understand that it’s proper of me to always be honest to them, and you, about feedback during any product or marketing discussions. Having said that there is generally very little product discussion. This year especially discussion was limited as we were located in Spain that has very strict rules on promotion of medical products to people who are not medically qualified. Apparently having Type 1 Diabetes for 43 years means I’m merely an amateur. Hey ho.

In regards to payment for our time this took the form of 100 trees being planted on the group's behalf in Portugal through https://www.reforestaction.com/en/reforestation-europe.

The official theme of the two days was ‘Make it Count’, looking specifically at digital trends, emotional well-being, stigma and access to care. There were roughly seven different segments with the common theme of the above running through them. Obviously in there were some elements that really connected with my thinking and others that passed over my head a little. And I think that’s great too as the other 30ish people in the room would like those bits.

I’m going to share with you my take-aways that got my mind whirring. Top of the list was Wendy Smith. After a motorbike accident at the age of 17 she suffered severe spinal injuries that have affected the rest of her life. Helped by the mindset of her parents she saw the experience as an opportunity rather than a hinderance and subsequently became a paralympian, coach, psychologist and NLP trainer. An inspirational woman.

What really struck home to me was her discussion on stigma and how we all hold pre-conceptions. If we are aware of them and acknowledge them internally we can become much better people when dealing with others.

An example was a reply she received from a Doctor when asked about if something would be possible

"We don't know, because you're unique."

It's a simple phrase but reframes any type of preconception about what will most likely happen if a certain treatment is given. We often talk in language of certainties even though we know multiple factors can impact on the result.

And while we come with bias and beliefs based on our upbringings and experience, so do the healthcare professionals we engage with when talking about care for us or our children. Acknowledging, or even accepting these biases exist, might change how we feel in those discussions and also help us to adjust how we need to challenge more effectively if needed.

There were interesting discussions that followed about how the language of diabetes has changed over the years but also how it still needs to change more. Even in a room of people that would like to classify ourselves as open-minded and accommodating, we, including me, still hold preconceptions that time will hopefully change. I could write for a long time on this as my mind has gone down a few rabbit holes since so it will be something I’ll come back to in another post very soon.

Dinner on Friday evening was a wonderfully fishy tapas selection. It was also a good chance to learn from others about many things that affect their life with diabetes including cycling from the Netherlands to China and how to try to make a living as a photographer in Italy.

Drinks in a bar followed and as I left I was ‘promised’ by others that they would also be at the 7AM meet for a run along the harbour. Apparently the day before 11 people with diabetes had said they would be at the start line.

4. Yes, FOUR! That was the grand total of people with diabetes on the 52 seater bus. Along with us were a couple of muggles who worked for Abbott and John Burns, our guide for the session. The Guinness of a few hours earlier certainly didn’t make it an easy one but it was a good chance, again, to speak with people fighting their own diabetes (T1 and T2) battles across Europe. To add to the challenge a very quick transition from waking-up to starting to run meant I didn’t have much chance to prepare my pump basal rate. This meant I was also juggling a plummeting blood glucose for the final couple of kilometres. Thankfully the trusty Haribo kept me the right side of 3.5, although collapsing in a heap while proving that diabetes shouldn’t be a limiting thing would have be perfectly ironic.

As always, for me, the real value in these meetings comes in the non-timetabled parts where we get to chat with people who we’ve perhaps talked to online or maybe never talked to at all before. Once again it highlights that even in a medical condition that has no boundaries it’s possible to share common thoughts with people who, without diabetes coming into my life, I would never even know about.

Saturday was more thinking about the same topics. The subject of language came up again and it highlighted how there’s still so much work to be done with the professionals who we work with to manage our condition. Language Matters is becoming a global phrase that is hopefully making a difference and the more we speak about it, the more change can, hopefully, happen.

Before we said our “Adios Amigos” we had a final workshop discussion on improving access and breaking down barriers and stigmas. A big chunk of the solutions came from our shared value in peer support. Almost universally, the one thing that had helped a lot of us improve our own diabetes life was the help of people who are walking in our shoes at the same time. The value of peer support and reaching out to the those who currently feel alone in their diabetes world should never be downplayed.

Thank you again to Abbott for asking me to be part of this discussion and I hope our feedback over the two days can also help you to improve things for others with diabetes, of all kinds, across Europe and beyond.

Keep an eye for my upcoming stigma post, it might be an interesting one.

Diabetes Admin and Possibly a Big Mistake

2022-04-26T09:08:00.006+01:00

No writing for ages then two separate topics in one post. Keep up at the back, this could be a fast one - unlike my running, which we’ll come to shortly …..

Part Un

So the last time I whittled on it was about how advancements in technology are all about the least worst (or other adjective) option for people living with diabetes. Another area where life is just painful in the world of all diabetes types is admin. So much chuffin’ admin.

When not juggling glucose levels to a manageable range, it seems the rest of the time is spent organising and correcting errors in the system. A prime example is a recent change for Martha. The end result was needing her long-acting Lantus insulin being added back to her prescription and needing some additional test strips for a new blood glucose meter as her old one was kaput. Not too hard a challenge you’d think? Well I won’t go into the details but the end results were returning from the chemist with an insulin cartridge, instead of disposable pen, and the wrong type of test strip that wasn't compatible with any meter we had. Added on top of that the pharmacy misplaced some insulin of mine at the same time I went to collect hers

Now getting this resolved doesn’t sound too inconvenient: An email to the wonderful diabetes specialist nurses, who send a new letter to GP who amends prescription, writes a new one and I collect. But it’s the time and hassle fitting all of this into our day and then making multiple trips to the pharmacy. I also appreciate the extra waste of misprescribed drugs as these cannot be taken by anyone else once handed over and I had walked out of the pharmacy.

And this is on top of the standard admin crap of ordering other supplies, booking and attending appointments and just keeping on top of stuff

Now reading back the above it sounds like a bit of a pointless rambling whinge; and yep, you’re right. But it’s another example of the unseen challenge of living with a long-term condition such as diabetes. And that leads me nicely on to Part Deux

Part Deux

Back in 2009 before I started my diabetes turnaround I decided I was young and healthy enough to try and run the (last) Flora London Marathon. My diabetes management at the time involved a fair chunk of guesswork but somehow I made it round in a rather annoying 5 hours 3 minutes.

After a few random challenges in the middle involving bikes and fire (not the same challenge thankfully), and a massive incentive in the form of Martha’s diagnosis, I decided to enter again and run to raise money for JDRF UK. Their focus is to work towards lives without Type 1 Diabetes and also reduce the impact of it while searching for that golden cure. Sounds like my kind of charity!

And so I’m now just over 5 months away from standing on the start line in a park in Greenwich with 26.1 (yes that 0.1 matters!) miles ahead of me without an Uber or underground to get me to the road in front of Buckingham Palace. The training has started but I’d forgotten how hard running actually is on the body and my knees are feeling it already. However the incentive is easy to keep in mind. If I can keep going every penny I raise will go towards making Martha’s (and mine I suppose) life easier and healthier in the future.

On my fundraising page - oh yes, you knew that was coming - I shoved in a paragraph that’s been bouncing around my head a lot lately…..

Type 1 Diabetes is strange condition. Living with it is a continuous 24/7 job that requires constant thinking about everything that gets eaten, drunk or any activity undertaken; that includes simple stuff like nipping out for a quick walk or doing the housework. Paired with that is continually adjusting insulin or food to allow everything to happen. Because me, Martha and the rest of the family do this continually and with so little fuss it's almost invisible to others how much of our daily life is spent trying to do this successfully; and it's blooming hard work! Staying alive every day when your body is actively trying to kill you is as much fun as it sounds.

If you like what you read here and if any of it has been helpful at any point I’d be very grateful if you would be able to click the linked donate a £, $, € or ₪. Every single penny, cent or agora is appreciated.

Obligatory link - https://www.justgiving.com/fundraising/davesowerby2022

That’s all for now. I must get out on the road as I know there’s no substitute for miles in the bank. Although I hope to achieve a faster time than 2009 thanks to improved health I also know the 13 years extra age in the legs will be working against me.

I will keep posting updates on the running on here as the leap from a man who struggles to keep running for more than 20 minutes to one who can do it for a few hours progresses. Hopefully.
Wish me luck, I'll need it!

Have a great day and may it be free of diabetes admin.

Least Sad Option

2022-01-18T19:59:00.003+00:00

*Random photo, taken recently, as not sure what to go with this time.

Occasional visitors to this blog may be familiar with the fact that I’m generally a glass half full kind of bloke. Diabetes throws me and my family many challenges but my overall outlook is always trying to ‘look on the bright side’ and appreciate that things could be a lot worse.

And that works. For me. I find it far less stressful to think on the positive side than the reverse; and this beast of a condition can give plenty of options for negatives if we let it. Shall I mention my unbelievable clutzyness and higher than ideal stress levels when I had an expired CGM, empty pump and no blood glucose meter while a couple of hours from home recently?

Before I really get my teeth into my subject of this ramble I also want to say I also struggle with today’s option of only having a single, very strong, point of view on everything. I quite enjoy debate and changing my outlook as I learn more and more about something. So feel free to tell me I’m completely wrong and how I am ridiculously stupid. I might not agree with that today but I might in a while and I’m OK with that.

Modern diabetes is a world apart from where me and, mainly, my parents entered it forty-odd years ago. I’ve got much faster working insulins, the ability to know, fairly accurately, my glucose levels by looking at my phone and a tiny electronic box in my pocket that stops and starts insulin delivery based on what my glucose level is. Totally mind-blowing and something that a lot of people have worked bloody hard to achieve. I also feel incredibly lucky to have access to this kit through the NHS with no costs, apart from general taxation. And the research continues to increase accuracy and automation at a speed that completely amazes me every time I see a new article about something about to he released.

To all the scientists and researchers in the century since insulin has been delivered to people with diabetes, I say thank you very much; you are amazing and my cup of gratitude is overflowing for you.

Can you sense a ‘but’ coming? You can? Well spotted!

Sometimes reality hits. It did for me last week. The reason for the thunderbolt isn’t important but at the time I found it almost disabling and it prompted me to get typing today. Again I'll say this isn't my normal thought on diabetes but I think it's OK to think it sometimes and especially in relation to my advice to other parties below.

Although everything is amazing and technology helps to make diabetes easier; the best tech available is still always the ‘least sad option’. The idea that having to fire a needle into myself every three days, stab my fingers at least twice a day and press buttons whenever I want to eat or exercise isn’t what you’d call ‘great’. The alternatives are other forms of puncturing the skin or an early shuffle off the treadmill of earth. Neither really appeal.

Having diabetes is a massive burden on the people with it and the people around them. When talking with friends, family and even others with the condition we frequently play down how much of our daily headspace it occupies. And how chuffing hard it is sometimes to have to be switched on to our condition so much of the time.

In the coming years we’ve got more tech coming than would be conceivable 20 years ago; Dexcom 7, Medtronic Guardian 4 (then 5), Abbott Freestyle Libre 3, Omnipod 5, and many more, the list is endless. But a little honesty would be nice. Please. These are all things arriving to help make things a little less shit than they are currently are. This is normally missed from the photos of cyclists and dog walkers. To be fair to Medtronic the recent blue balloon campaign came closer than I’ve ever seen before at showing what a drain diabetes is.

*I’ve started now, once I get ranting I can’t stop!

Another line where med-tech finds it hard to resist is the idea of ‘upgrades’ when technology needs replacing. I’ve always found the word a little distasteful. These aren’t mobile phones that we are demanding so that we can take better photos. This is kit built to reduce our diabetes stress; make our lives easier, not easy, just easier. The obligation to feel lucky and grateful to have the stuff that keeps us safest is a little humiliating.

Most people will recognize the phrase “Don’t worry, the cure is only x years away”. I’ve long enjoyed the wry smile it generates on my face. In 2013 I got a t-shirt made that said “It’s OK, the cure is only 10 years away. © 1979” Perhaps we’re closer now than we ever have been but 10 years isn’t today.

Is it OK to feel like this when only 101 years ago diabetes would have meant a very short and not very healthy life? I’m not sure, as my head struggles with a little guilt at coming across here as massively ungrateful.

We CAN achieve anything and as a group people with diabetes we are magnificent at smiling and carrying on as though it’s not massively impacting on everything we do. And that’s almost OK because there are individuals facing much bigger problems than us, but that doesn’t make it easy or less heavy.

Does your device or insulin manufacturer realise, and hopefully accept, that being the ‘least crap option’ is still the best place to be in your thoughts? They should aim to do this and do so without being upset and having the honesty to embrace it with you.

Don’t worry, Positive Dave will be back again soon, just needed to get this one off my chest. Thanks for reading this far and I’d love to hear if you think I’m right, or if I’m completely bonkers?

We Didn’t Know What We Were Doing Either

2021-04-20T16:19:00.002+01:00

Growing up as a child you will often look at your parents and wonder how they can be so knowledgeable and speak with authority about pretty much anything you ask. In relation to bringing me up, I sort of assumed my parents had had secret training and once a person reached a certain age they had supreme knowledge bestowed upon them. This allowed them to impart rules and expertise to me as I grew.

It was a short time after the birth of our son that the reality hit. Most of parenting is winging it and asking for advice from those who have been there before. For most new parents this comes from their own parents and friends who’ve done it before. In time confidence rises. As long as you are doing what you need to do to keep them healthy, safe and happy, that’s the most important thing. Everything else is bluster and convincing the offspring that you are the wise and worldly ones they should always believe.* And the Circle of Life continues. I’ll pause here and allow you to have a moment to sing-a-long to Elton. In time people might ask us stuff about parenting and it’s always nice to share what has gone well and warn about what hasn’t worked for us.

*Yeah, I know this slowly fades as the teenage years arrive but allow me to stretch the story a little.

You are possibly reading this ramble as a parent of a young person newly diagnosed with diabetes. First up, welcome to the club. Keeping on with the lyrical theme I always liken it to Hotel California. It’s a lovely place, even if it’s one we’d never chose to be in. There are lots of people who are in the same place as you and we’re happy to help if you want us to. Sadly you can never leave. Yet. Maybe one day. 🤞

The next thing to say is that it’s all going to be OK. I’ve had Type 1 for over 40 years, so when our daughter was diagnosed at the age of 12, it hit us hard but we also could very quickly put long-term perspective into everything. Diagnosis is often an emergency situation where the person diagnosed might have got very sick, very quickly, after slowly deteriorating over weeks at such a slow pace it was hard to see. Congrats on getting your young person diagnosed though. You might feel guilty it took so long, even if you had no prior knowledge of this wonderful condition. You shouldn’t though; the fact they are now getting their insulin from a syringe, pen or pump instead of their pancreas means all is good now. It’s highly possible your head is also now full of the fear over what every blood sugar reading might do to their future health. The early days are often full of presented rules and threats to the point where you are fearful of pretty much everything. How can you ever get to the point where you know everything and will do enough to send them off into adulthood managing their own condition and still being healthy, safe and happy?

I’m in a few Facebook groups for parents of young people with diabetes. The fear and feeling of not knowing anything is always present in those who arrive looking for someone who can help them to understand what it means. It's normal to feel like that and that’s OK. But I feel it’s so important that from day 1, diabetes is seen as a part of them and not defining them. They have diabetes and the diabetes will have to adapt with whatever the person wants to do; please promise to do your best to try not to let it stop anything, unless laws prevent obviously. There are enough World Cup winners, ex-Prime Ministers, pop stars, actors and people who have trekked across deserts and the arctic to prove that it’s a pain in the arse sometimes but it’s not a blocker.

The early days after diagnosis are tough because your ability to ‘wing it’ is hampered by a lack of experience and a massive fear that anything you do will cause either short or long-term damage. In these days it’s important to reach out and ask for help. You will probably have been given an out-of-hours telephone number to call by your diabetes team. Believe it or not, this number has been given to you to use and they won’t get mad at you for calling it. If it’s 11pm on a Friday night and blood sugars are sky high, give them a call, they want to help. Another option is to find someone locally to you who has a child of similar age with Type 1, or has Type 1 themselves. A little bit of sharing on what has arrived on your doormat will normally prompt someone to say “Oh, I know Johnny has Type 1 and his parents are really nice.” If there’s no-one, ask your diabetes team if they know anyone who might be able to offer a sympathetic ear. (If you're reading this and you still have no-one, drop me a line, honestly). The only thing I would say is that Type 1 Parenting is like normal parenting. If another parent suggests something that you don’t agree with, or sounds dangerous, smile, nod and do a little more reading before deciding that would be a ridiculous thing to do. Don’t be afraid to let common-sense kick in and ask yourself if what you are about to do is safe in the short-term. You can always discuss future strategies once daylight and calmness has returned.

The ‘joy’ of diabetes is also that it doesn’t always follow the rules and doing exactly the same thing three days running will produce three completely different results. That’s OK too. Blood glucose results, just like HbA1c tests, are not scores; they are a marker for what to do next. It’s hard sometimes but please don’t look at a number as bad. It’s an indicator, so if it’s high possibly correct and if it’s low have something to eat. Getting lots of numbers between 4 and 8 is an absolute dream but if that’s not happening don’t stress. It’s easier to make rational choices and small changes when the mind is calm, then when it’s panicking.

Just like our growth as parents and the building of knowledge over years, the same will happen with you and your child’s understanding of Type 1. Work with them to help them build the management into their life. Let it be something they are proud of bringing up to prove how even more fantastic they are to have achieved something even with juggling insulin and carbs at the same time. Ultimately it’s their condition but for now they will need you to help them work out how to manage it in a way that doesn’t hold them back. You can do that in the same way you winged it to become a wise parent.

Or was that just us and everyone else always knew what they were doing?

Please let me know if you're new to this journey, or have been doing it a while. How's your 'winging it' going?

2020 - More Light Than Darkness

2020-12-22T13:59:00.002+00:00

It’s approaching the end of the year and thoughts turn towards what has happened in the past 12 months and whether it’s been ‘good’ or ‘bad’ and whether we come out the other side in a better place than we started it.

Over the last few days I’ve seen a few messages from public facing people in all walks of life signing off for the year with mainly negative phrases:

“What a terrible year that was!”
“Glad to see the back of 2020!”
“Good riddance to a bad year!”
“Can we promise to wipe 2020 from history?”

First up the obvious bad. A lot of people will experiencing Christmas without a special someone for the very first time. This will be an even tougher time of year for them. The amount of people who have passed away earlier than expected cannot be ignored, or dismissed. Covid-19 is certainly a ruthless virus that has greatest effect on those with the smallest defence against whatever the body throws at them. And at times I’ve feared I, and members of my family, were in the often named group of 'vulnerable' people.

Our family has been very fortunate in that none of us have been in a situation where we have felt the need to test or isolate. A few of our extended family have isolated as a precaution but nothing positive confirmed at any stage.

For us without doubt the biggest hit has been the inability to see close family apart from very occasional garden visits. This break has been hard emotionally as there’s nothing like a hug from those you love when feeling a little wobbly.

A late blow to the stomach has been the closure of international travel meaning a Christmas gift planned for delivery this week is stuck somewhere on the wrong side of the English Channel and it probably won’t arrive until the New Year.

But let’s have a look at what has happened and how, even in what appears to be darkness, we have plenty of rays of light shining through.

Chez Sowerby 2020 has definitely had some highlights. Including:

More time spent with immediate family means more time to get done those things that always seemed to get delayed. The back garden had a bit of a makeover and we look forward to being able to have people round to enjoy it with us soon.

The one hour of exercise in the first lockdown definitely encouraged us to explore the local area and we had some great walks out, especially when the weather was wonderful. I know we are very fortunate to have these sights within 10 minutes walk and therefore have it much easier than others without the access we do.

I’ve worked at home at least 3 days a week for nearly 15 years now. With everyone else being forced to too it has strangely made me feel more connected to my colleagues than ever before with regular Pod meetings definitely helping.

Connecting online with distant family is something we hardly ever did previously but the occasional quizzes of 2020 gave us chance to do that in a way we’d never have done before. We’re looking forward to doing one final 2020 one this week.

Haircuts were suddenly a thing to really appreciate!

We had an amazing holiday in the north of Scotland where we managed to escape the continuous news for a week to enjoy the scenery, wildlife and surprisingly great weather. It was a real tonic after 6 months of not going out, going out, not going to work, going to work, ……

We took the chance to splash around on the canal.

We even found some good football moments. There weren’t a lot of games played but memories were still created to be looked back on in years to come.

Our nephew got married to his wonderful bride in August. It was in doubt all through the year but they managed to organise a perfect celebration even with restrictions involved. Facebook Live streaming to us all stood outside followed by Prosecco and photos in the churchyard afterwards made it a very special. And with the most junior bridesmaid rocking a Dexcom with style we were very proud.

Which bring us on to diabetes. The end of 2019 was tough in the house with Martha’s diagnosis. But 2020 enabled her, and us, to learn how to get a handle on the condition and how to deal with wobbles. We’ll not eliminate them but we know how to cope and understand that there’s never blame attached to highs and lows; it’s just how it goes sometimes. And then half way through the year the extra cannonball of coeliac and going gluten-free arrived. That was, strangely, almost harder to handle. But she did, and she did it fantastically well. I must also say the support of the diabetes community has continued to be priceless for us and I thank you all.

Reduced activities provided an initial issue with numbers for both Martha and I, but as life became very repetitive and regular it also became easier to manage once the tweaks had been made.

Diabetes tech has still been advancing and people such as Tim at Diabettech, and Kamil at Nerdabetic have done a great job of keeping everyone up to date. The future is so exciting and the great thing is that it’s for all treatment types. For so long everyone has been talking about pumps and CGMs only. Now more and more the next generation of insulin pens are also getting written and talked about. In the UK access to technology is slowly improving and future initiatives seem to be making this a more available reality rather than a dream.

At the start of the year when the virus was first emerging I was very lucky to be able to get to ATTD in Madrid. However since then all those types of events have flipped online. I’ve also been fortunate to contribute to some of them through either presenting or taking part in discussions with other people with diabetes. Even when speaking I always learn something from them and the value of the question and answer segments should never been downplayed. Also having them forced to be moved online has made access much easier for those of us not located in a big city. I hope this can continue in some way even when movement is free once again.

While in Lockdown #1 the wonderful Jen asked me to be part of her Type 1 on 1 Podcast series. It was a great therapy session and I really enjoyed looking back at my life with diabetes and also how it affected us all when Martha was diagnosed.

New diabetes technology is being launched all the time and I look forward to being able to, hopefully, try some of it out very soon. When I do I’ll share here whether it works for me or not.

2020 has definitely been a year for the family and I feel very lucky to have my most wonderful wife and children to share it with.

If you’re reading this, and have got this far (well done!), the challenges of 2020 will have affected you in your own personal way. We've each had fences to overcome and for some those fences are still being climbed over. I really do hope though that you can also see your own moments of light in what is commonly viewed as being a completely dark year.

And yes, it’s slightly disappointing not to have that last gift wrapped and ready for Christmas Day but it will be something to look forward to in what can be a wonderful 2021.

Merry Christmas and Happy New Year!

Going Live With The 670G

2020-12-22T13:33:00.002+00:00

******** Hmm. So I found this in my drafts when it should have got published in 2019. Oops. Here it is anyway, I hope it's still helpful.😀********

Hey! I'm glad you've arrived here. Whether it was on purpose or an accidental click you are welcomed with open arms and payment with a bag of Haribo.*

In my last article I talked through the decision making process for my pump refresh. For those that haven't read it I'll cut to the chase, it's the Medtronic 670G. If you want to know my full reasoning have a look To Loop or Not to Loop.

So what's happened since? Well at the start of July I was booked in for training and the handover of the shiny new pump. Unfortunately due to illness this had to be cancelled and postponed to early August. I wasn't too chuffed about this and asked very politely, yes I was polite, if I could get my hands on it so that I could get used to the buttons and menus before receiving the full AutoMode training in August. After an awkwardly long pause my diabetes team said “Yes!” I may have let out a little yelp and done a little jump of excitement at that point.

So I went along and picked it up.

You can see how that went and how I got set up by having a look at the three videos I did:
here - Getting to know the Medtronic 670G System - Chapter 1
here - Getting to know the Medtronic 670G System - Chapter 2
and here - Getting to know the Medtronic 670G System - Chapter 3

*Haribo bags subject to availability and numbers of hypos between now and the claim being submitted.

******** Hmm. So I found this in my drafts when it should have got published in 2019. Oops. Here it is anyway, I hope it's still helpful.😀********

Podiabetes

2020-06-02T06:12:00.015+01:00

Welcome readers! For those of you visiting for the first time I say a hearty "Hello!" and I hope you like what you see. Feel free to have a meander back through the archive. As we'll come to shortly, I've been having a reminisce about all of my diabetes and certainly a lot of my blog-life. There's some decent stuff in there I think and I hope you like it too.

So before I wrote my first blog here, I'd spent a little time in the world of Twitter and other lesser known forums. I started to meet some fantastic people with Type 1 Diabetes. And one of those people was the most wonderful Jen. Otherwise known as Miss Jen Grieves. Over the years we've stayed in touch and it's been great to see her turn her blog into a multi-media encompassing library with something for everyone.

Last year she delved into the world of Podcasting with her Type 1 on 1 series. It was great to see her speaking to some fantastic people who all tackle this little monster called Type 1 Diabetes in their own special way. It came as surprise recently when she dropped me a line asking if I'd be part of her Season 2. Nervously I said yes and we arranged to have a chat over my experience of diabetes through the years.

It was great to speak to her and I hope you find it interesting to listen to my verbal ramblings, and pseudo counselling session, under the expert guidance of Jen.

Before you click away and listen to what we talked about, thank you, as always, for taking the time to visit my page. If you've got any questions or comments please leave them below, find me on the socials or drop me a line to the email address at the top of the page.

Transistor
Google Podcasts
Apple Podcasts

Stay safe and enjoy!

Dave

PS. I mentioned Diabetes UK (as they are now) camps from my youth. Here is a trophy I won at Springhill Camp in the late 1980's for tidiest tent. As I said in the Pod' sport wasn't my strength back then!

One Hat Is No Longer Enough

2020-01-14T14:53:00.000+00:00

Since starting to put down my thoughts in word on this page I've also read with interest the views of parents of children with diabetes. Reading their stories I’d often sit a little bit too comfortable and be grateful that I was only looking after myself. Well you can guess what happened next.

In summary my daughter Martha gained the unhelpful antibodies and was diagnosed with Type 1 just over a month ago. The diagnosis bit is covered expertly by her here - My diagnosis

Looking back there was a viral infection about a month before. For the week prior to diagnosis all 4 Ts existed in some way. But a bunch of assumptions on what the cause might have been for these independent factors meant we didn't join up the dots immediately. And you'd think we'd know what to look for!

To say it hit us hard is putting it mildly. And that's coming from a family already managing my diabetes 24/7. It might be wrong to feel lucky in a situation like this but, if it was going to arrive anyway, I'm glad the whole family's experience of me helped us to hit the ground running. Being able to do a quick doom-laden finger prick on the morning of diagnosis gave us the key fact. From there we followed the process through. Knowing that it would be tough but not impossible enabled us to see the light. I can only imagine the horror and uncertainty that will come if a newly diagnosed child is in your family and all this information that you need on day one is suddenly dumped from a great height.

I'll take a pause here and thank the fantastic team that dealt with us on the day and have done ever since. It was flawless. A call by Laura to the GP surgery at 8am, appointment with GP within 3 hours, referral straight to paediatric ward at Royal Lancaster Infirmary, diagnosis confirmed by a range of nurses, doctors, and blood-suckers, meetings with consultant, dietician and DSN and release home (at our request) all before 7pm. We will forever be grateful for your speed and human touch on a day that wasn't easy emotionally for any of us.

Talking with my parents later it brought back memories of me as a 3 year-old being made to run up and down the hospital corridor so that they could see what would happen with my co-ordination when my blood sugars dropped and I had a hypo. Thankfully none of that here!

All credit to Martha, she was the one pushing the 'no-limits' boundaries from day one. Within an hour of the formal diagnosis a professional asked her about the sport she plays. Her response was that two days later she would be playing for her school in a football cup final at Morecambe FC. There wasn't even a thought in her mind that diabetes could stop this. And it didn't.

Very quickly it became apparent that all the decisions I make silently in relation to handling my diabetes we would need to teach Martha. And that's been hard. Anyone with Type 1 will probably agree that not all choices made are logical or fully proven. There's an awful lot of "well, let's try this and see if it works". A definite difference though if the experiment is on someone else's body. It's well shared that at least 42 factors influence blood glucose. (Because 42 is the answer to life, the universe and everything.) Now I need to pass on those factors.

I'm experienced at managing an adult's Type 1 using a variety of of technology. Now it's a clean start with injections, finger-stick blood tests and a quickly added Libre. We've played it safe all the way. Despite the urge to get straight into carb counting, dose adjustment and Libre we hung back and waited for the green light from Martha's team. Any changes to insulin dosage, exercise strategy or carb-ratio is discussed with them first as they have much more experience with 12 years old and type 1 than I do; a few decades have passed since then for me. There's also now Youtube which is always a great source on helping see things in action. As an example look at my little helper when I did one for inserting a Libre. That person also appeared in quite a lot of my other diabetes video blogs which is a sadly ironic now.

The impact on the non-D members of our immediate family can't be understated. Diagnosis in a family with no-one with diabetes leads to a very steep learning curve for all but it's a shared learning experience. I know Laura found it hard as the mum will naturally have a big part of the early diabetes decision making. Because I'm, sort of, experienced Martha naturally asked me a lot of questions early on and for Laura this must have been hard to see. We both had stages of grief at what was lost but I was able to slip into organisational automode and just work through it. Thanks to this blog and other social media I also have quite a large network of people I could call upon for support.* Laura didn't have this although the contact from other mums since has helped a lot. For Martha's brother he has been fantastic in wanting to help her and make sure she is OK. Proud of you Joe. I don't want to speak for him but I know it's been hard to see this happen to his sister.

*A quick word of thanks to the all people who have either reached out to me or responded to my requests for help. The cushion of support felt is priceless. You know who you are. Thank you x

Now that it's post Christmas and we're more than a month in, normality is starting to arrive. The usual sport driven activities are being worked into her treatment and she was fantastic in managing everything. Last Sunday with two intensive football games lasting over an hour that were only 75 minutes apart. She bossed it.

For my diabetes, this has gone into autopilot. And for this I am eternally grateful for my 670G. It's allowed me to drop the ball a couple of times and fixed things through the night when I've not bolussed correctly or just eaten badly. I absolutely love this piece of kit. Considering 1979 or now I know Martha is 'lucky' to be in a place where the 670G, other homemade artificial pancreases and devices like the Libre exist. Some of it might not be right for her now or in the future but the fact they exist at all is just mind-blowing.

Since New Year Martha has had a lot of lows that we needed to record so that we could find a pattern to share with her team. And thanks to the food diary and Diasend this has been used to make a couple of adjustments. It's highlighted to me that there's no substitute for detail when trying to identify a pattern. And so my note taking has kicked to try and improve my numbers too.

So my Diabetes Hat wearing now comes in two forms. One for me and one that I share with Laura and Joe for Martha. Martha has her own hat. It has definitely allowed me a better perspective on what being a parent of a child with diabetes is like and I do hope and believe that my time stabbing and dosing myself will help a little. Time will tell.

Thanks for reading and once again I'll point you to the real leader and expert in Martha's diabetes - https://martha1diabetes0.blogspot.com/

Aye, Aye Captain

2019-10-07T06:22:00.000+01:00

“You’ve done really well to have type 1 diabetes for over 40 years and not have anything like this happen to your eyes before.” A sentence that was meant to be kind and reassuring but one that hit me like a knife.

Complications have always hung over me like a blade but this was the first time I’ve truly felt they are an inevitability for me rather than just a possibility.

On the day before I’d been driving my daughter to, another, football game and suddenly my vision changed. It wasn’t blurred and I could drive safely but it was like I had dirty glasses on and the floaters were very noticeable.

After I got home my wife persuaded me, strongly, to visit our local optician. I was of the mindset of burying head in sand but she rightly refused to let me do that. Thank you as always L.

Sadly the optician had left for the day but the kind assistant willingly phoned around all opticians within 15 miles to try and get me seen as quickly as possible. The only one who could help within 24 hours was Boots who slotted me in the next day. I was fine with this as it reduced the sense of urgency and stopped me feeling like I was making too much fuss.

By the end of the day all objects had disappeared and I was convinced I was over reacting. However after waking, the effects slowly reappeared though at a lower level.

At the appointment I had usual measures taken and eyes dilated before she had a good look into the back of my eyes. The diagnosis was posterior vitreous detachment. Or in other words a change that’s not reversible but normally appears a couple of decades later than where I am now.

Thanks to the advances in technology I now have some of the leading, available, diabetes kit attached to my body 24/7. But this doesn’t mean I can avoid everything.

I also know that life throws awkward arrows at lots of people and a slightly affected vision is pretty low scale in the world of permanent body changes. I continue to thank my lucky stars that I’ve got this far with, still, nothing major hitting me and I’m going to keep remembering that as much as I can.

That doesn’t mean I can’t be a little scared now and again. I wouldn’t be human if I wasn’t. When it happened I was a lot scared and today I’m still a little bit worried. Thankfully I’ve got a wonderful wife and family around me who always support and I’m very lucky to have them with me when I wobble. Though my daughter was a touch disappointed when i pointed out I don’t need a guide dog. Yet.

But I’m not moping and not looking for sympathy. It is what it is and thanks to sharing here I can keep perspective on where I am and how fortunate I am.

Thanks for reading and good luck to you all.

PS. Yes I know I’m a little behind on my 670G blogs. A short summary is that’s not perfect but it’s bloody amazing and I love it. Longer review to follow next time.

To Loop or Not to Loop (Part 1 of x parts)

2019-07-03T10:06:00.001+01:00

Pleased to meet you, I’m Dave and I’m a lapsed blogger.

(*There’s a rather complicated disclaimer for this series of posts. In summary I’m getting paid nowt and haven’t got anything because all choices and decisions have been driven by me. It might spoil the end if you read it now but if you want to it’s down at the bottom. Thanks)

It’s been a while since my keyboard and video device were fired up for the purpose of this blog and, as always, I apologise for my tardiness. Like everyone with Type 1 diabetes, at times I often struggle to fit managing my condition into a busy life and in this instance the blogging has dropped off a little. Oh well, time to pick it up again with a new series. The thinking here is that if I say that I will write the next one I probably will. Anyway, you’re rambling again Dave; crack on.

Almost exactly 8 years ago I decided it was time to sort out my condition and grab hold. At the time I was injecting and testing at less than optimal frequency. Once I became engaged with my diabetes I quickly arrived at a point of deciding whether to stay with multiple daily injections or shift to an insulin pump regime. If you’d like to revisit my headspace at that time please have a read of my ‘To Pump or not to Pump’ blog from back then. Also at that time I was very fortunate to have started to get to know the wonderful Every Day Ups and Downs Mike who was going through the same decision making process. (BTW If you click on the link above and never come back I’d understand, his articles are always 5 star.)

After saying yes to the pump I got to choose, from a choice of one, the Medtronic Veo. A few weeks later I ended up with Fred.

Over the years in-warranty replacements, and the very kind lending of pumps from elsewhere – you know who you are - have kept me with the same pump model. I now have Pink and we’re comfortable with each other.

Me and Adam (or Red or Pink) were, mostly, very happy together. We did however, have a break in 2015 when I had a brief, #gifted, fling with a 640G for 64 days.

Thankfully Adam wasn’t bitter and took me back as long as I promised not to be unfaithful again. And this is how it has been since 2011.

Those of you who have an insulin pump may be scratching your head and wondering how and why I haven’t been forced to update my out of warranty pump before now. To be fair, I’m not entirely sure. I think the 640G thing confused hospital systems about how old my pump was. I also smiled nicely quite a bit and said it was working fine and I’d sort it once it broke. “Surely it’s better I’m saving the upfront costs that a new pump would bring?”

A key reason for me not switching was that I didn’t want to get locked in to another 4 years when technology was advancing so quickly. I genuinely loved the SmartGuard function of the 640G that helped to reduce my hypos but I also knew that something that would also deal with the highs shouldn’t be too far away. And if Medtronic were working on that I hoped the competitors would be too.

Over this time what began as a small revolution started to take hold. #WeAreNotWaiting and other groups of wonderful engineers were using existing technology to build their own ‘artificial pancreata (AP)’*. This has also become known as Looping. The origin of this is the idea of closing the loop between blood glucose measuring and insulin delivery so that it is done with very little input from the person with diabetes.

*No, I didn’t know what the plural of pancreas was either. Every day is a school day.

If looping and #wearenotwaiting are new terms for you I’d recommend some background reading as others with much more experience describe it much better than me. This excellent article by Tim is a great place to start.

#edit Tim has also pointed me towards this excellent book Automated Insulin Delivery by a leader on the subject Dana Lewis avaiable in print or as a free download. "Dana is a creator of the “Do-It-Yourself Pancreas System” (#DIYPS), founder of the open source artificial pancreas system movement (#OpenAPS), and a passionate advocate of patient-centered, -driven, and -designed research." In summary; an expert in this field. Follow her.

One piece of the jigsaw used in a lot of the homemade systems was a Medtronic pump that looked exactly like mine. And if the original Adam had survived until today he would have been one of that kind.

Unfortunately for me, over time Medtronic locked down the pumps after the media went a little hysterical about pumps being able to be controlled remotely to give lethal doses. It was all about the version number of the pump software. My current one is version 2.8B. To be able to loop I needed version 2.6A or younger. At one stage, with permission, I went hunting through a box of old pumps at my diabetes clinic and came away with a few possibles. Unfortunately as soon as I put the battery in, the version number was always too new. And this week they have issued a soft recall to remove all the hackable pumps from use; for safety reasons obviously.

All the reading about looping online was drawing me in and over the last couple of years the idea of a more automated system has appealed more and more. Tied with this I have been wearing, and paying for, an Abbott Freestyle Libre almost full-time for nearly 4 years so the idea of not using continuous monitoring in a more productive way seems negligent. Slightly deteriorating hypo awareness has also made me realise that from a safety point of view adding a few automated airbags into my diabetes care would be a very good idea.

I’ll pause here to say that the following is how my thinking has developed over time. Just because it is different to others' doesn’t make mine or their decision wrong. Your Diabetes May Vary has never applied more than it does at the moment with so many different treatment options possible.

So which way would I go?

For me it has come down to two key questions, which are linked very closely.

1: Which pump, or system, would I like to have the most?

2: Which are available to me?

In my inner psyche I do like rules and staying on the grid. Saying that I’m not averse to bending the rules a little. Until NHS funding was secured in April for my Freestyle Libre I was using a MiaoMiao device to enable me to get my glucose readings delivered to my watch. There was risk here as the readings didn’t have the official device’s adjustments for temperature etc but I accepted and accounted for those risks to give me convenience and alarms.

Over time I have discounted the idea of paying for an older Medtronic pump or buying a newer one from another country. As demand has grown both would have probably cost upwards of £500. And with that price comes no assurance on how long it would last before I'd need to purchase another.

So now it comes down to options for new pumps that are on the market that have automation built in or where it can be tagged on.

As it is the list I could see available is:

Home built systems: Dana RS plus Dexcom, Omnipod plus Dexcom plus Rileylink, Accu-chek Combo plus Dexcom plus Smartpix or Realtyme.

Manufacturer built systems: Medtronic 670G plus Guardian 3, Tandem t:slim X2 (with Basal IQ imminent, Control IQ forecast for 2020) plus Dexcom G6.

So how did I reduce the list down to a top three very quickly? Well, I’m afraid the first two to go are the Omnipod and Accu-chek combo. The Omnipod for no other reason than I like a tubed option. I know exactly where the bit that I need to give me insulin is. It’s attached to me somewhere. The Omnipod needs its handset and I would lose this. There’s no doubt here. My forgetfulness is legendary and the day would come when I’d walk out the door, get on the train and shout a few swear words because the vital bit was next to the kettle at home.

And the Combo? I'll be frank, it just doesn't excite me. I know I can automate my pancreas with it but I've got another 4 years to go with a new pump and it will be in my pocket for most of that time. I'd prefer a colour screen. And if no colour then it needs to be smaller; a la mylife YpsoPump. There you go, no logical reason to cross it off the list but it's a personal choice so I'm letting myself be irrational.

So three to go…

Dana RS – One of the smallest pumps in the world it also uses Bluetooth to communicate with a smartphone to allow management through an app. Also designed to be compatible with Android APS that will allow automated insulin delivery decisions to be made based on reading from a compatible CGM. At the moment the most popular CGM brand to use for this is Dexcom. The UK distributor for the pump is Advanced Therapeutics, sensors are direct from Dexcom.

Medtronic 670G System – An upgrade on the 640G, the 670G uses, Medtronic only CGM, to continually read the glucose level in the body and deliver basal insulin according to that. Once fully in automode it does not require patterns to be set as it is continually updating. The wearer still needs to enter carbohydrates for meals. A downside for many people is that the target BGs are much higher than people can set with homemade systems. Another downside for some is Medtronic’s Guardian 3 sensor. I have always found the earlier Enlite sensors to be good but others have not. This has has knocked some people’s confidence in the brand and has a knock-on effect to those who have never tried but hear the testimonies. My usual mantra applies here; unless you've tried you can't be sure how it would work with your body. On top of that in the UK are also issues currently with sensor and consumables supply. For me, I’ve not had an issue but the others have had problems and that could be a concern going forward. The 670G is supplied in the UK directly by Medtronic only through centres that have been approved for supply.

Tandem X2 – The Tandem is a fascinating option. A new entrant to the pump market it is manufactured more in the way of a mobile phone than an insulin pump. This means that as features are developed these can be refreshed through software updates rather than a whole new pump. This helps to reduce the fear of committing to something for 4 years when the next big change is "in the next 12 months".

New deployment in the UK has Basal IQ live and existing users will be updated soon. This works in a similar way to SmartGuard on the Medtronic 640G. Using the Dexcom G6 sensor it suspends insulin before the wearer hypos and resumes basal delivery once the numbers are safe again. The next upgrade is Control IQ. This will add in the ability to automatically deliver insulin when the wearer’s blood glucose is above a predefined number.

No confirmation either way on whether there will be a cost to upgrade the software in the UK. Dexcom sensors are available from Dexcom direct and the pump and consumables are supplied to hospitals by Advanced Therapeutics.

So I have a theoretical shortlist of pumps I’d like to move on to next.

I like to share a lot on these pages about my health and don’t tend to keep any of my box closed. For the next paragraph though you’re going to have to just accept it without the reasoning and move on without too many questions. Sorry.

I now also have CGM funding possible through my team. This is not available for all and I understand how fortunate I am but as always there are criteria to meet and I meet them.

So which way do I want to move and which way can I move? I really can’t pick between the three although my inbuilt preferences are to lean towards the 670G and the T-Slim. I like the concept of full integration although the lack of talking to my phone and watch are frustrating.

Next up came a discussion with my, outstanding, consultant and we talked through the options. I enjoyed the conversation. Although the end result was almost pre-determined it was a real bouncing of ideas and reasoning. First off the list is sadly the Tandem. The clinic currently has no-one on this pump and not much resource in the short-term to learn how to support it. I certainly could push for it but this will inevitably take some time and a lot of work.

Next to go is the Dana RS. There are some in clinic on this but the team's experience is less and the need for an Android phone to loop is also a drawback for fruity Dave. It really is the small things that make a difference. An option could be to carry a dedicated AP phone that would do the brains part. But that's something else to carry on top of pump, normal phone, spares etc.

Which leaves the “world’s first artificial pancreas”. This phrase makes me smile as Medtronic were also using the term “artificial pancreas” in 2015 with the 640G. One of those parts where marketing inflates the reality slightly. My clinic has supplied Medtronic pumps for a long time and therefore have experience of the support and Carelink systems. For me, I’m also experienced in using the sets and Carelink which is the software that analyses the data after the event. This means this part of the change isn’t as big a step as it would be with the other pumps. I know it’s wrong to feel safe with a brand when there are ongoing supply issues. However, I’ve not experienced any problems where supplies were at zero so can only judge based on my own memories. I haven’t used the Guardian 3 CGM sensors but when I’ve used Enlites before they’ve always worked OK with me.

Making any decision involves a list of pros and cons. At the moment for me, the pros of the 670G vastly outweigh the cons and I’m excited about getting the chance to give it a go.

Until then me and Pink will continue bolusing and getting along until mid-July.

I’m hoping to update my progress with the pump as I get to know it more and more. I'll delve more into the pluses and minuses of the system set-up next time. Among these are the forecast impact on my, always supportive, family when the alarms are going off through the night for calibrations etc. It will impact the whole house I am sure. I never underestimate how much my little Type 1 affects the lives of those closest to me and the worry it adds. I am hoping that the 670G can reduce the worry a little thanks to the airbags built in to keep me safe. Thank you as always and I love you lots.

I hope you’ll join me on this journey into a new approach to managing my diabetes. In other news I now have a new camera tripod so the return of the vlog is a possibility. Which will please and disappoint in equal measures I think.

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PS. I'll finish with a picture taken of me by Kirstina at the top of Scafell Pike. This was a walk I did with my son, sister and brother-in-law to raise money for the fantastic JDRF. We left at 01:15 so we could be at the top by sunrise. We managed this and we came back down safely before a lot of people had woken up. If you have a spare £1, $1 or €1 any donations towards finding a cure for Type 1 diabetes are gratefully received here.

Disclaimer time – It’s quite possible you know about my 640G blog posts and have assumed Medtronic have somehow pulled a few strings and promised me lavish weekend trips to the Geneva to ‘encourage’ me to have a 670G set-up. They haven’t. They did however pay for a train fare for me to go down to exotic Watford late last year to let them tell me all about the ‘system’. As always it’s interesting to hear what 'evil pharma’ are saying and as I know my integrity is solid I keep an open mind. It’s obviously up for you to judge my independence. My thought process is that if I have enough annual leave left, I’d always prefer to be in the room giving my thoughts, feeding back experience and challenging claims if given the opportunity.

For full openness I’ve also previously signed an agreement with them to force me to write in an honest way and confirm I will not be paid for anything I say about Medtronic. However, I haven’t talked to them at all about the ‘choice’ I have made and it’s possible they are reading this as new news for the first time.

And for those who are still mumbling “well he’s been bribed with an apple Danish and fizzy water so he would say that wouldn’t he” thank you for reading this far, I wish you all the best and a fond farewell.

Freestyle Libre Update - July 2018

2018-07-19T10:40:00.000+01:00

Sometimes my blogs are general and are timeless classics. (Yes I am lolling lots at that and my tongue is firmly in my cheek.) The point I'm making is that if you fired up the DeLorean and came from the future most of the post will still be correct. This one is slightly different as the information is pretty specific to July 2018.

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Each summer Abbott Diabetes Care invite bloggers from across Europe to their Diabetes Exchange Europe events. The purpose of the event is for Abbott to learn from the diabetes community and also for the bloggers to learn from Abbott about their products and how these are being developed. Here are my thoughts from last year. This year’s event was held in Dublin and saw 34 bloggers attend from right across Europe and also one from Canada and two from Brazil. Imagine the Eurovision Song Contest with slightly less singing or voting.

*Full disclosure is that those attending were not paid but received standard class travel, nice food, nice accommodation and a full programme of events. Not all attendees are Libre users and a signed agreement confirms that we are not obliged to report anything or only say good things about the company or its products. We were also asked to delay sharing the details below until today due to key financials being reported by the parent company. I am more than happy to discuss integrity and bias if you desire; but please don’t do it secretly; I prefer to know what people think.

I've got a few blogs in my head from the weekend but it may take me a while to convert them into typed words. As this one is more factual than opinion and as the news is fresh I was keen to get it out quickly.

I won't be the only one sharing this information today so please ask any of us the questions that pop up and we'll answer the best we can.

On the final morning we visited West Pharma near Dublin. The facility creates parts of the device and inserter and then builds and packages the final devices before they are boxed onsite and sent to distribution centres. The West facility is one of two manufacturing plants in Ireland that have automated the assembly process since January 2016. The implanted sensor parts are still manufactured in Witney, Oxfordshire. The West plant works 24/7/365.

Following the tour there was a presentation and question and answer section from Jared Watkin (Senior VP, Diabetes Care) and Scott House (VP of Operations).

Currently their are over 42 countries with the Libre, 5 with the Libre Pro and one with the Libre H (see below).

There are 800,000 people using the Libre every month. Current growth is at around 50,000 new customers per month.

The Dublin site is a sister facility to the one in Cork which both produce the finished product. Late last year and earlier this year investment was secured from the board for further manufacturing expansion of a 9000m sq. manufacturing plant being built in North West Ireland. They aim to do in 2 years what took them 5 years the first time around. This new facility will manufacture the sensor part of the device to duplicate what is done in Witney. This preparation was started at the beginning of June this year.

There are three devices are currently in production:

Libre – the normal 14 or 10 day sensor used by patients independently.
Libre Pro – a device used by healthcare professionals (HCP) where the person with diabetes has the sensor attached for 14 days but is not able to scan the Libre. The HCP downloads all the data after 14 days to spot trends etc.
Libre H – this device is only used in hospitals in China. It allows Chinese HCPs to scan multiple patients in very large wards to reduce finger prick testing. This products works well in China where data is written down rather than automatic downloads. We were told that automated systems and GDPR mean it is not expected this will be rolled out into Europe at the moment.

Keeping up with demand is a big headache for them and they are continually returning to the Abbott board to ask for more manufacturing investment. Unfortunately getting the green light, then finding locations and building the manufacturing devices takes time. All the machinery is custom made but having made them elsewhere already helps a little for future expansion.

By the end of 2019 production will have been increased by 50% from today’s levels and it will increase in further in each quarter of 2020.

The existing plants reached full capacity last month and this should mean the current restriction for new customers will be lifted but controlled in the next couple of months. Priority for new customers will be those who have registered an interest and have joined a waiting list. Order restrictions of 2 sensors per month (outside of US) will probably continue to be in place to try to limit stockpiling by users. Their focus is to ensure current customers can get hold of a required supply of sensors before adding new customers.

Feedback is actively welcomed. To quote Jared, "None of us can sit here and pretend the Libre is the perfect product and we don't need to do anything else." Feedback was key question for me. Abbott monitor both the official email / telephone help routes to spot patterns and recurring errors. This includes things such as where devices fall off within three days. Abbott are also now tracking through social media reports of problems to try and find patterns. Where a recurring problem is identified this will be researched. The take-away message here is to report all errors and problems when the sensor becomes ineffective.

The product is constantly being developed. The adhesive has been changed three times so far to try to reduce the instances of skin reaction and poor adhesion. The LibreLink and LibreView apps are also being improved and tweaked based on feedback. The use of apps instead of dedicated readers is beneficial as they can roll out software updates much more easily than to the standalone readers.

Now for the big ones:

Yes CGM is being worked on but you'll need to be patient. The desire is to keep the same shape and design with any product change. This will allow costs to be kept down and therefore help the price charged to the users. They are also very conscious of alarm fatigue and see this as a benefit of the Libre over CGM. They are also keen that any integration with other products that includes injections and pumps. eg Bigfoot Biomedical
They are moving towards joining the JDRF initiative on open protocol and see risks but also benefits in doing so.
R and D is constantly being done. Cost reduction is a key driver for everyone there. A key driver is to lower the cost to consumer. This is more likely to be through extended sensor life rather than a reduced sensor cost. i.e. if a sensor can be made to last 20 days this will cost the same to manufacture as one that lasts 14 days. The biggest problems to overcome seem to be skin reactions and longer adhesion times needed.
They expect competition to arrive. Can't avoid it forever. But Abbott believe that by investing in efficient manufacturing they can lead the field on sensor accuracy and cost. Production volumes are already far than the competition and they expect this to remain the case. This may sound arrogant but they are willing to be challenge.

If you've got this far, thanks. You'll have skimmed through the disclosure at the top and possibly taken everything I've written with a big pinch of salt. As I said, Abbott demanded nothing of me. I will say however, after looking into the eyes and listening to all Abbott paid employees I met, I have 100% confidence their desire is to make the Libre the best product they can and also doing it in the best way for the consumer / buyer. It's up to you to judge my impartiality.

I was one of many there this weekend so please seek out their blogs and thoughts as they will have detail I missed and also different views on bits too.

The Promise

2018-07-03T12:17:00.000+01:00

So Chris aka Grumpy Pumper asked for contributors to his Complications series of blogs. I've read lots of other great posts on his site including his current experience of self-managing an IV drip - yes there are lots of blood filled pictures; you have been warned!

Now I like to help where I can so my immediate thought was to start writing. But then I paused. I know Grumps is keen to show that complications happen and they aren’t anything to be ashamed of. I agree. Fully.

The problem for me is that my complications today and historically are limited. I have the annual “you have background retinopathy, so be a better diabetic” letter along with the higher-prevalence condition of a feckless thyroid meaning daily thyroxine tablets. Not much to complain about there really. And I have fantastic support from my wife and family who keep me safe when I’m struggling to do it myself.

My qualifications to talk on the subject seem distinctly lacking, so I should stop here, bow my head to those who have come through or are living with the side-effects of diabetes, thank them with gratitude for sharing their stories and retire with grace. Or should I?

My experiences may be second-hand by seeing others with Type 1, either in my extended family or my online friends, but the constant background fear of the inevitable is always there for me.

For years the warnings of doom and impending gloom were what drove me away from going to my diabetes clinic and being honest about my numbers. If it’s going to happen what’s the point? My clinic appointments are now a lot different but the background beliefs still partly exist.

I view complications like I view a speeding ticket for my driving. The risk is always there and I do what I can to reduce the risks. However, at some point I’ll see the flash in the rear view mirror and the ticket / letter from a random complication clinic will arrive in the post.

What's often ignored is that we’re not talking about an exact science here. Complications arrive as a consequence of diabetes not purely as a consequence of badly controlled diabetes. While we may strive for perfect control as much as we can, we are reducing the likelihood of something happening, not removing the possibility entirely. Often I read about the certainty that;

Bad control = manky feet, blindness and other floppy body parts,

Good control = a nirvana of long-life and fluffy kittens.

My fear is that the more the story is told as fact, the harder the impact is for those that do get hit head-on by something that they weren’t expecting. Why harder? Well firstly there’s the complication to deal with. Secondly there’s the assumed knowledge that as ‘good’ control means no complications, if you have got one then your control has been, by default, pants. You’ve failed. You had one additional job after staying alive by injecting and testing daily, and that was to stay complication-free. It wasn’t hard. You under-achieved.

Wrong. If you have got a complication, you didn’t lose or fail, life just dealt you another poor card. Lift your head, be proud to be still alive and carry on.

And if you don’t have anything else happening, you’re winning and you may never lose. Happy days.

Life throws bad stuff at people without diabetes and sometimes this is really big stuff that makes our daily challenges seem insignificant. We’d never look at those experiencing it, shake our head and judge them, So don’t do it to yourself or your peers. Offer a hand to hold or an ear to listen to and help them with their challenge that day.

One final thought links in with my last point. Just because someone with diabetes has something else going on, don’t guess that it’s related. A person walking down the road with a white stick and an insulin pen in their pocket could have just got hit by two completely separate, unrelated arrows. ‘it happens sometimes and let’s offer that person the same hand to hold and ear to listen with.

Don't be afraid to have discussions with those close to you or in the DOC (Diabetes Online Community) about things you're experiencing or feeling. Never be embarrassed to #talkaboutcomplications.

Keep dodging those arrows friends and enjoy the ride. Live for today, not for the fear and dread of tomorrow. Most of all; be nice to others and be nice to yourself.

*Random Summer of 2018 photo

#talkaboutcomplications

Spare A Rose - An Alternative Life

2018-02-07T14:13:00.002+00:00

Spare A Rose - An Alternative Life

Although I'm not a fan of labels sometimes I'm called a Blogger. And sharing this description is Chris who is more often known as the Grumpy Pumper. A good chap who has no desire to hide the truths of living with Type 1 from his perspective. Head over to his blog and Twitter feed for some juicy feet pictures - click this link if manky feet are your thing.

Chris put the call out to other people who blog about a project he is very keen on because he wanted to spread the message far and wide. The formal request went like this:

“Who’s up for writing a post about how life would be different if at diagnosis Insulin was not free and you can’t afford it? #SpareARose”

Spare A Rose started in 2013 and is something I’ve tweeted about in the past but, with regret, I've never blogged about. The campaign is run by the International Diabetes Federation’s Life For A Child organisation and using their words:

It's simple: buy one less rose this Valentine's Day and donate the value of that flower to a child living with diabetes in a less-resourced country.

Last year over $22,000 was raised by Spare A Rose during 2017 through thousands of small donations. This enabled Life For A Child to support 369 young people with the insulin, tools and education they need to manage their diabetes.¹

So how do I address the question posed by Chris above? Well in my usual way, I’ll answer the question I choose to answer rather than the one given. (For anyone at high school taking exams, please don’t follow this method.)

Here goes.....

How would life would be different if insulin and medical treatment is not free at point of use and I have to make choices based on that?

I live in the UK where healthcare is paid for through general taxation. The concept is that medicines are free at the point of use. There are plenty of discussions to be had on the rights, wrongs and oddities about this. But as a principle I like it. A LOT. From a diabetes perspective no-one dies because they cannot afford insulin. No-one has to chose between paying for insulin or food.

So how would my life be different now if I had to pay for my insulin, needles, test strips, insulin pump and pump consumables? The initial thoughts are about how much it would cost and the impact of this on the rest of my life and the life of my family.

The bigger impact would probably be the emotional ones. I cannot imagine how tough it must be to have to make a choice between choosing to eat a healthy balanced diet or skipping meals because £5 gets added to the cost of every meal. And in many places this £5 equals more than a day's wage. And for background insulin (basal) there is no way to escape it, so you are paying daily for the chance to exist.

Would it have affected my mind so much that it also affected my educational, career and personal choices? I don’t know but I expect it would have. The constant worry and need to find the money to live would have made me make different life choices.

If I have to pay for every blood test, doctor’s appointment and eye test, I have a choice to make; do I choose to have them if it’s costing me money to pay every time? Possibly not. So what’s the impact of that? Do I now have undiscovered complications ticking along that arrive like a 10 tonne lorry at a later date? Probably.

And when that lorry appears a small daily cost becomes a very big cost to fix and then my choices become much harder and I’m trading big debts for my family for decades for a few extra years on earth.

These are my hypothetical choices but these are the same decisions being made by people living with type 1 diabetes, around the world every single day. These people are just like you or your child with type 1 diabetes. Chance, fate or a random deity has put you in a different place able to buy a rose (or 24!) instead of using every penny or rand to stay alive.

(Space deliberately left blank for you to think about your situation and how it might be different without easy, affordable access to medicines and healthcare)

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So impress the person who makes your heart skip a beat when you think about them and give them 11 roses this year instead of 12 or 12 instead of 24. Prove your ❤️is more thoughtful than just a quick Interflora online purchase. Display to your true love what a good person you are. Donate at the link below to show you’re part of a special community that cares about someone who’s battling daily to get supplies of life-saving medicine and equipment to live one more day.

We are that community. We care. You care!

Thank you for taking the time to read and thank you for your donation here - https://lfacinternational.org/sparearose/ You can choose to donate the value of a single rose, a bunch of them or a whole darned bush. One rose ($5) equates to life for 1 child for 1 month.

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* If you read my last blog piece you’ll also have seen my comments on insulin4all. That is a similar campaign looking to improve access to insulin around the world and this includes countries that are definitely not “less resourced”. Yes I’m looking at you the pharmaceutical companies, selling to the US Healthcare behemoths at inflated prices which are then passed on to the users.

¹https://lifeforachildusa.org/2017/06/01/spare-rose-2017/

DXAmsterdam - The Cost of Diabetes

2017-09-30T09:50:00.002+01:00

In the interests of being bang up to date and cutting edge in my reviews and information here's a few words on my trip to Amsterdam with the Abbott Freestyle Libre team in June. Yes, only three months ago. I must slow down in my rushed reporting otherwise you'll be visiting this blog every month instead of twice a year!

Obligatory 'biased view' disclaimer out of the way first. I was one of nine bloggers from the UK and Ireland invited for the weekend in the city of canals and killer bikes. There we met over 20 bloggers from around Europe. Yes, they paid for my travel, food, a few of my drinks, though definitely not all and provided a pretty good, fun-filled weekend. On the flipside they did not demand any quick blogging, which is a good thing, or 'positive' reporting. All views and opinions are my own.

Now if I'd got to this quicker I'd be able to give a fresh and detailed review of the weekend. Instead what you get are the bits that have really stuck in my mind. In the interests of saving me repeating what has been written before I've given a few links at the bottom of this to other blogs. Please do click through as it's a great selection.

For me the weekend was a great chance to meet the other bloggers with different experiences and knowledge sharing a common dodgy pancreas. Some of this was entertaining and some were pretty upsetting and grounding.

Related to this I'm now going to focus on the thing that is still on my mind three months later.

On the Friday night we had a brief presentation from Matthijs Graner who runs http://www.eendiabetes.nl/. His presentation was around the idea of a simple thought leading to interesting projects. He told the story of how he had worked to build photographic calendars of young people with type 1 diabetes in the Netherlands.

We were then asked by Matthijs to have a think about things we could do that could be useful in different countries. Chatting with Mike and a few others we started to think about the thing that had already come up a few times in conversation. Living with our diabetes thing 24/7 it's easy to become engrossed in our own experience and focus on the bad bits for us. It quickly became apparent that while the UK has challenges for funding and technological availability we also have all insulin provided free at the point of use. Along with this, people with type 1 diabetes have access to blood glucose testing strips. Sometimes their are local limitations on quantity but a good argument or change of can normally fix this.

For me I also have access to an insulin pump to deliver my insulin as I meet criteria for this. Along with this all cannulas, reservoirs and batteries for the pump are paid for. And when I need to replace this, although I will probably have to justify why I need one to improve my control, I do not expect it to be an issue getting it replaced. The make and model might be more limited but it’s a start.

In the UK the government collect money from general and salary taxation. That pays for the National Health Service. The basic concept of the NHS is that care is free at the point of need so that if you need medicine or treatment you do not have to pay up front before it is provided. Before people dive in here and say “Ah, but….” I’m trying to summarise the generality. Specifically for type 1 diabetes, insulin and test strips are paid for by everyone who pays taxes so that the person with type 1 diabetes does not pay when they order a refill of insulin, test strips or pump supplies if they have a pump. Local awkward GPs and CCGs may mean you are experiencing different but I’m speaking for the majority.

Outside of this I currently pay for the Freestyle Libre to provide me an up to the minute graph of where my blood sugars are. As an example, as I write this my number is 4.5. But I can see from the graph that this number is good as the line is relatively level and the direction of the indicating arrow is horizontal. This is a personal choice for me to make my life easier. If I chose not use it I’d be looking at a similar number on my Contour Next meter and wondering if I’m dropping and whether I need to read an impending hypo or the reality which is I’m fine for now. It's not cheap and definitely not an option for all but it's a choice I've been able to make to make my D-life easier.

We’ll come to the rest of the world in a moment. What about the rest of Europe? After we shared our idea around the room it quickly became apparent that each country provided a different model for paying for your diabetes. For some pretty much everything was paid for by the government and for others hardly anything was. In those countries where it was ‘paid for’ there may be additional health insurance to pay for because you have type 1.

Some models of provision were simply bizarre to me. An attendee from Turkey explained that her insulin pump was partly paid for by the government. She had to pay roughly half and then pay for all the consumables. And after 4 years when the warranty expires the pump has to be handed back and a new one purchased even if it’s working perfectly well. Totally mind-blowing.

Of particular concern to me was the testimony of Maria from Greece. The country’s financial strife was such a problem that test strips were now becoming something that had to be bought and she was part of a an active movement that was campaigning very hard so that people with type 1 diabetes had access to very basic levels of care and weren’t just neglected. Once again it struck home to me how fortunate I am to have the NHS.

These discussions showed to me that it’s easy to look at the green grass elsewhere and cherry pick what other countries do well and ignoring what they do badly. As I write this a life critical campaign called Insulin For All https://www.t1international.com/insulin4all/ is trying to ensure every person type 1 around the world has access to the basic liquid that is needed to keep them a live at an affordable price. For those reading from the UK it may surprise you that one of the countries where this problem is largest is the 13th richest country in the world with the common perception that it is one of the most developed. The USA. Yes there are people across the pond who are making choices every day over whether to pay for food or insulin. As a child of the NHS I find this truly shocking.

As I sat in Amsterdam hearing fantastically inspiring stories from people like Claire Lomas eating dinner with my new blogging friends at the back of my mind was a guilt and gratitude that still lingers to this day. I’m fortunate to have been born when and where I did which gives me access to high quality insulin deliverable in a safe manner in a way that I can afford. 100 years or 10,000 miles in another direction and my story would be completely different and possibly much shorter.

Last up comes a thank you to Abbott. I believe their intentions are to improve technology and the access to it. As a private company, yes they will need to ultimately make a profit, such is life. But all the people I have met from Abbott and the look in their eyes convinces me their personal aim is to improve the lives of people with all types of diabetes. They will get things wrong, such as the random expiry dates of sensors and massive supply issues when the Libre was first released but I hope they will learn from these and over time the cost of the sensors also drop to allow access to all irrespective of local funding. Disclaimer is nice and clear at the top so I'll allow you to judge my integrity but I know I'm OK.

As promised here are the links to other blogs and also another link to Insulin for All. For a good list of documents relating to insulin costs in have a look down Laura’s timeline on Twitter. https://twitter.com/Kidfears99

Every Day Ups and Downs
Thrive Diabetes
Adrian

Thanks as always for reading. See you in a few months!

Am I The Only One?

2017-05-25T17:06:00.003+01:00

This blog is for you.

Are you a person with Type 1 diabetes of any age but most likely over 12?

Are you the only person you know well with diabetes?

Do you just want to be 'normal' like your friends?

Why can't you eat what you want when everyone else is gorging on chocolate?

Does blood testing scare you?

Why does it scare you? Is it the pain of the stab or the pain of seeing a number that proves you’re failing again? And does that number come with massive guilt?

Have you had appointments with doctors and nurses where you just get told to control your bloods better and to then lower or raise your blood sugars as if it is easy?

Does the idea of a check-up fill you with dread?

Does the standard "How is your control?" question at other medical appointments also hurt you like a knife when asked?

Does every other person with diabetes have either perfect control, or blindness and amputations? They must have, as those are the only two options offered.

Are there so many things to control and juggle that it’s overwhelming?

Is it all too complicated and hard to understand?

Do you have other medical things going on that mean diabetes isn't your only worry?

Do you sometimes eat food without injecting when you know you really should?

Do you get mad at people that should care about you always telling you what to do?

Even if they don't say it, do you feel like they wonder why you’re not doing better?

Have you had diabetes for many years but still don’t understand some things that you think you should know? Does this make you feel Diabetes Stupid?

Do hypos scare you?

Does being high scare you?

Is it all just too much hard work to bother?

Now ask yourself a few more questions and think carefully about the answers.

You're not the only one!

I'll say it again. YOU ARE NOT THE ONLY ONE!

What does a blood glucose number actually mean?

It’s not a score, it’s a sign of what you need to do next. If it’s low, eat something, if it’s high, then maybe you need some fast acting insulin or some activity. Don't feel judged.

Why should I engage with my diabetes?

You know this already but it’s not going anywhere for a very long time. So maybe it’s time not to fight it; time to work with your diabetes instead of against it? It is part of you and you are special, so it is special too. It's not going away. Maybe it's time to woman-up or man-up and face it head on.

No it's not fair you've got to test, inject, and handle the highs and lows when your friends don't. And yes it does make you a bit different. But they've got their own hang-ups too. Trust me; everyone has something that they think makes it hard for them. At least your challenges come with sweets as medicine!

Whose hospital appointment is it?

It’s yours. It’s not the doctor’s. So prepare beforehand. If you’ve got questions or things that are worrying you a lot, write these down and take them with you. And don’t move from your seat until they have answered your questions. You live with diabetes 24/7/365. Make sure that your one 20 minute segment with a consultant every 3, 6 or 12 months is valuable.

If you are finding things hard; tell your doctor or nurse. If they know what you are really thinking then they can help you better to smooth things out.

Am you the only person who finds Type 1 Diabetes hard?

No. Definitely not. I do!

We're all out here. You are not the only person with the Type 1. You know this already. But you are also not the only one who finds it hard. Keep remembering this and change the way you think. You’re not failing, you’re finding it hard. And it can get better.

Have you got a plan for your diabetes?

Make a plan. Ask yourself what would you like to change? Then seek help to make that change. Go looking and the responses you get might surprise you. People want to help. Including people like me. And also people closer to your age who are living through the same challenges as you today.

Find information? Use the links at the bottom. Dip in, dip out, then dip back in when you have a better idea about what you want to do.

Speak to people like you. Yes, they exist. Is there a local diabetes group for young people? Have a look online. Ask your diabetes nurse. And if there isn't, ask them if there’s anyone else locally who they think you might get along with.

Ask the stupid questions. You might be surprised as others probably don’t know either. Diabetes IS complicated. No-one expects you to be an expert and know everything just because you've had it a month, a year, a decade, or your whole life. Please never be afraid to say "I don't understand".

Talk to your parents, carers, partners or family. They want the best for you. They really do. I was younger once and it’s only now as a parent I can understand how much my parents worried about me. Take a chance on telling them you find it hard. What is there to lose? Nothing. You’ll probably find you'll gain their respect. They are probably the people closest to you and the ones that ask you most frequently what your latest blood glucose number is or how much insulin you’ve taken. They do this because they worry about you. And they've heard the same doom laden promises of the future as you have. After you’ve read or watched this, talk to them. Tell them how you feel.

Now it's time for some cliché phrases

It’s your diabetes, no-one else's. You can own it and you can be the one in charge of it.

You are not alone. Open the door and you will find others facing the same struggles as you.

YOU
CAN
DO IT!

This photo isn’t to prove how I like jumping over fire. It’s to prove that nothing should hold you back and any limits are mostly set by you. Let's lift those limits as high as they can go.

Make a change by clicking through the links below and/or talking to people close to you about you and how you feel.

Thank you for reading this. Please share it and talk about it with the people around you. You might be very surprised at the positive response from others.

This blog is also available in video form here. The words are the same, the medium is different

____________________

T1 Resources - This is your encyclopedia of Type 1 info with all links doubly checked by a healthcare professional and then someone with Type 1 like you.

JDRF - The worldwide charity with a single long-term goal - to get rid of your diabetes. That's sounds pretty perfect to me. The website has some great articles too.

Diabetes UK - The UK's largest diabetes charity that also looks at Type 2 but still has plenty of advice for Type 1s.

Thank you.

A Hypo That Hurt

2016-09-28T09:32:00.001+01:00

Today I'm sharing my experience of a hypo (hypoglycemic attack) from a few months ago that has stuck in my head.

For those with a fully functioning pancreas a hypo is caused on a very basic level by either having too much insulin on board, not enough food or a combination of them both. Hypo symptoms vary from person to person and a good summary can be seen at Diabetes UK here.

As someone who's lived with diabetes for a while there are a few hypos that stick in the brain. And those that do tend to be the big ones. The ones that require the help of other people mostly. Thankfully for me this isn't a frequent occurrence but one that's unsettling none the less. A few 'highlights' over the years include; being collapsed in bed while visiting my sister in Germany instead of meeting up for a lunchtime squash session, collapsing in my hallway when my (other) sister was visiting the house with me scrambling around on the floor trying to get some sweets, and my personal favourite which is laying on the landing after my toddler son's bathtime and while Mrs Tangerine is coming to the rescue and getting some food he decides to draw on my face with a pen.

You'll notice from the descriptions above the really big ones normally come with massive co-ordination issues and the need for assistance from others. But the descriptions are also very factual and fail to give a sense of how it feels to be there. And I know my words here are entirely one sided and fail massively to capture the emotions of those around me trying to bring me back into the world of the conscious.

The one this summer was the first really bad one for a while and maybe that's part of the reason why it has hit me so hard.

First up the mechanics of it. As with all good stories it started with an impromptu visit to the pub in the afternoon. I'd had very little to eat that day and, as I've found recently, the lager I was drinking sent my blood glucose (BG) levels climbing higher. As it climbed higher and higher, in my drink fuelled brain, I decided to correct this and correct again by giving myself more and more insulin. Sat here now typing the outcome was inevitable and I got what I deserved. But the people around me didn't deserve what they got. For most of them this was the first time they'd seen me dangerously low and I know it surprised them too.

After a few hours we decided to return to a friend's house to continue the party. As time passed I started to feel more and more drunk even though I'd stopped drinking. The decision to stop was mainly down to the BG nightmare I was having and even tipsy Dave knew more alcohol wouldn't help the situation.

To add to the fun my BG testing kit was at home and the battery on my Freestyle Libre had died. This meant I was flying solo although by this stage my judgement was getting more and more messed up.

At this point my memories go fuzzy but I do remember very clearly sat on the sofa with my wife knelt before me force feeding me chocolate Minstrels. This is where it gets nasty and I did well to avoid getting hit very hard. In my hypo-head my BG levels were perfectly normal and eating food without taking any insulin was dangerous. With all seriousness and no thinking I shouted at the person who loves me unconditionally and doing their best to make me well "By making me eat these you are killing me!" Even now it's hard to think about without feeling massive regret and guilt. How that must have felt for her I can only guess. Her actions at the time were the polar opposite to killing me and she didn't deserve this abuse from me.

After a few minutes I agreed to prove to her that I was fine and would test my blood glucose levels. I mentioned above that my co-ordination levels often disappear but this time I was able to walk/stagger perfectly well. As we live on the same street we marched together back home. Both of us convinced we would be proven correct but obviously this was only going to be correct for one of us. I say we both marched but the reality was that Laura guided me home hoping I would finally accept the reality.

The BG meter was quickly found, blood extracted and applied to the strip. The five seconds wait for the BG meter to deliver its judgement is normally a quick process but on this occasion the penny dropped in my head and reality hit before the timer had finished and I knew the number about to appear would be a low one, it felt like time stood still. A bit like the scene in The Matrix but with fewer bullets. It was a low number. 2.0 mmol/L (36mg/dl). I've had numbers this low before without any drama but for some unknown reason this was hitting me hard. Whether the consumed Minstrels had already had an effect and I had been even lower I'm not sure.

The meter was a definite lightbulb moment and my own self-preservation and awareness kicked in. I started to consume some quick acting carbs and at the same point attempted to apologise for the abuse I had unloaded in the previous 30 minutes. I knew I'd messed up big style here and no amount of saying sorry could remove what I'd said. Added to this were a handful of close friends who had been left in a state of wondering what had just happened, how and why. They all know about my diabetes but this was the first time I'd shared with them the hard parts that Laura has experienced occasionally before.

Massive credit to Laura as she is fantastic and says she understands it wasn't the real me saying those things but I know that being on the receiving end of the abuse isn’t easy and must hurt. A lot. Especially when she’s trying her best to keep me safe. And also credit to my friends who saw this and didn't judge me but were amazed when I returned to the house virtually back to normal and able to have civil conversations about the episode.

The classic question to a person with diabetes is what does a hypo feel like? Well to everyone it will feel slightly different and for me each hypo can hit me in different ways. In this instance although BG levels quickly returned to normal the impact of it has been long-lasting. The guilt of putting those who are closest to me through that is significant and I'm very keen to do the best I can to prevent this happening again. This has involved cutting down on the drinking and also not correcting any alcohol related highs while still in the pub. If I am high then waiting until we leave is an acceptable risk for me to prevent the much bigger danger of being dangerously low.

There are other factors to bring into the equation too. As part of UK driving licensing rules people with type 1 diabetes need to get their licence renewed every three years. And one of the questions asked is if you have had two instances of a hypo requiring the assistance from another person in the last 12 months. For me it's over 12 months until I need to renew but if I did then this would count towards my two strikes total. As a side issue this would be harsh as I wouldn't have been driving that night as I'd drunk too much alcohol anyway. I guess saying that I only have disabling hypos when drunk wouldn't make me exempt from the analysis?

This post for me is a massive conflict as I hate to say that diabetes holds me back in any way. And as shown in the last one about a day on a bike this is definitely the case. The impact of this hypo wasn't in the short-term, it's been the ongoing worry, analysis and regret of it and the feeling that others will judge me because of what they saw and did on that night.

Thank you for reading and please do let me know about what hypos feel like to you.

Coast 2 Coast In a Day - A 150 Mile Sportive With Diabetes and Pies - A Short Novel

2016-07-14T11:44:00.002+01:00

** Pre-warning - I've tried many ways to make this post shorter and less demanding to read. After several failed attempts I'm throwing the challenge over to you the reader to complete it without needing food, gels or water along the way. Sorry. **

I’m writing for a mixture of readers this time so I hope I can get a good balance between cycling, diabetes and cycling with diabetes. To help those just here for one bit or the other I’ll put the diabetes specific stuff in italics.

The Sign-Up Discussion

It was a short conversation on Twitbook and email in June 2015 that was to have a massive impact on my next 13 months. I’m paraphrasing a little but the feelings on both sides are still spot on….

James: I’ve reserved you a place on my annual Coast 2 Coast in a Day cycling sportive.

Dave: Whoa! W-w-w-when did I say I could do this? I don’t have a suitable bike. And the whole idea is just crazy!

James: You have a good base of fitness and the right attitude.

Dave: What about the bike?

James: Roddy has a bike shop; he’ll point you in the right direction. See you in June 2016!

And that was sort of it. I’d accidentally entered a cycle event that would entail cycling 150 miles, 4500m in ascent (and descent) including some of the steepest roads in the country, across three National Parks and it was all meant to be completed in under 17 hours. For those more used to clipping your shoes into your bike pedals and spending a day in the saddle this might sound like a grand day out. I was filled with a mixture of dread and determination. My starting point was that it was highly unlikely I’d pull out now because I can be a bit stubborn when pushed but I also knew it would be hard work.

Time for a little background on why James had signed me up. James is part of the team running Open Adventure who organise endurance events of many forms and his annual C2C In a Day challenge is one of them. James also has type 1 diabetes and you may have seen him running with me when I was trying out the Medtronic 640G. By throwing these two things together James was keen to prove that Type 1 shouldn’t be a barrier to anything and offered 25 places free of charge to anyone with Type 1 Diabetes who wanted to challenge themselves. Along the way a chunk of these found injuries or urgent hair salon appointments that prevented them making the start line. This meant on the day there was 11 of us at the starting gate - only 9 made the photo call though. (Here's the link for 2017)

The Training

So as is the norm for ‘last minute Dave’ rather than start the training properly last summer, I looked at the calendar, saw that the event was months away and waited until just before Christmas to start putting the miles in.

Somewhere between getting signed up and February, James also approached me to be involved in a small film he’d commissioned with Summit Fever Media. It was to highlight the challenge that the C2C can bring to people of varying abilities and knowledge. I met with Ellie and Matt a few times before they kindly suggested that as I was going to try Hardknott Pass out a few months before the event they could come along and capture my enjoyment on film. So I caught the fantastic coastal railway up to Ravensglass and cycled to the bottom of Hardknott where they fitted me with a mic and drove (no cycling for them, oh no!) to the top to watch me climb majestically to the summit. Here’s what actually happened….

Struggles, Spokes and Summits - the trailer

My diabetes plan for training involved me trying a variety insulin, food and testing strategies. A problem I was frequently coming across was massive spikes in blood glucose levels immediately after I finished a training run. This was especially the case after rides where I had finished at high intensity levels. I took another look at my notes from the Animas Sports Weekend and slowly built a plan based around a pre-finish bolus and temp basal reduction several hours later. One by one the problems started to get solved. The big concern for me was still not really knowing how to handle food on the day.

In the training as I was carrying food and clothing to feed me and keep me warm and dry for the longest training runs (up to 120 miles) I had multiple bags on the go. Initially I’d presumed this would be normal on the day but on perusing the photos from last year I spotted most had very little with them. At most it was a bag for the top tube and a saddle bag. So this was the way I went with the idea of having very full jersey and jacket pockets.

Also as part of the T1s Go Cycling group there was quite a bit of support going on between the team. Plenty of suggestions there on managing blood glucose and energy levels on the longer rides we were all doing. Through that we also managed to source some matching cycling jerseys through Animas. This was a late request and they were really helpful in getting it approved. Thanks also to Scimiter Sports for helping with the design and supplying the jerseys at a very late stage. The jerseys definitely made it much easier to spot members of the team on the route and feel that I wasn’t the only one juggling a feckless pancreas at the same time.

Accommodation and Registration

So despite my claims in the video above, I did keep going and found myself packing my transport for 150 miles and my bed for the night into the boot of our car before the very accommodating Laura drove me the one and a half hours up to a village in the far west of Cumbria on a Friday night.

I’d contemplated booking a room for the night in a local hostelry but decided on camping for a few reasons. Firstly I knew I’d be up and awake at around 4am so it’s far easier to get off an airbed than out of a comfy hotel bed at that time of day. Also the cost of £15 was much less than a hotel room would be, so more money to spend on a comfy bed at the other end where I knew I would sleep well. On arrival at Seascale Primary School we unpacked the car and I sad my goodbyes to Laura. It was quite grounding at that point to know that the next time I’d see her I would have already conquered two significant climbs and would be well on the way to crossing the country.

After that I carried my camping stuff around to the school field at the back where I found plenty of tents all popped up and ready.

Once I’d managed to peg my pop-up tent down and set up my bed for the night I rode down through the village to the registration at the Sports Hall towards the bottom of the hill. Here I received my number, information pack, timing dongle that was attached to my wrist, neck tube and a Cliff bar. I also picked up a couple of labels to go on my bags and camping stuff that would be transferred to Whitby for me by the organisers.

After getting my stuff I biked back up the hill to the school. On the way I passed a food hub that had been arranged that was supplying a variety of hot and cold food for people wanting to eat. I chose to use the Purple Lunch Box parked in the school yard where I had a tasty bacon butty for about £2.60. There was also pasta, other dishes and deserts available.

Here I also deposited my bike in the school hall along with around 200 others for the evening. They were looked after until around 12pm when the doors were locked shut until they were reopened in the morning at about 4am.

Outside were some water containers for filling up water bottles and some portable toilets.

At the same location was the first group of bike mechanics for the weekend who were available to make any last minute tweaks or emergency fixes. Although I didn't use them I believe time was free but parts were chargeable.

In the school playground was a map of the British Isles and I stood there for a few minutes wondering what I had agreed to do! What I did know though was that tomorrow I would be going mainly eastwards.

Next step for me was to wonder back down into the village where I waited for my brother who was driving up from Cornwall. Unfortunately a severe accident on the M5 had slowed down his progress but it gave me chance to watch a fantastic sunset over the coast.

After Pete had arrived with my father we had a photo against the map of the route and the reality of what had been something to worry about later was starting to hit home. That looks a blooming long way on a map!

A quick second tent erection of the day and I went with Pete back to the Purple Lunch Box where he had some food and we chatted with Louise and Kate who were nervously excited too.

From a diabetes point of view I was having mixed success. The day up until leaving home had been fairly level and then on the drive over (I wasn’t driving; thank you Mrs Tangerine) my levels started to drop. A temp basal of 0% and a few sweets lifted me up but gave an indication of the fun the next few hours would bring. The excitement, nerves and bacon bun, where I might have misjudged the carbs, lifted me up to 20.6 mmol/L (360mg/dl) before I went to sleep…. (to be continued)

As I predicted getting to sleep was a challenge and it felt like Christmas Eve with added nerves. I’d agreed to meet up with the Type 1 Cycling team at 05:15 near the start. Because of this I set my alarm for 4am as I wanted plenty of time in the morning to stay relaxed.

The Day Had Arrived

During the night the crash from a insulin correction for the 20.6 blood test saw me drop to hypo levels of 2.9 (52) on waking. This wasn't the perfect start I had planned. Hey ho. Some quick acting glucose taken on board followed by another bacon bun (as below) meant I started the ride at 7.0. I could see from the Freestyle Libre I was wearing I was slowly rising but I was happy with that. One of the reasons for the 4am alarm was also so that I could start my temporary basal on my insulin pump of 50% (that means the amount of my usual background insulin) approximately 90 minutes before I started pedalling. Through training I found an early reduction helped to avoid an initial drop at the start of exercise and also meant I wasn’t constantly eating to counteract the background insulin through the day. This level of temp basal had served me best after trying 0%, 25% and 75% in training rides with mixed success. But if you're going to try this practice first and find what works for you. YDMV.

Breakfast was provided by the Purple Lunch Box who were still on site and it was bacon bun time again but this time with a coffee to get me awake. A quick wash and brush of teeth and then I went back to get dressed into the lycra and filled my jersey pockets with supplies for the day. In retrospect I went with far too many gels but a mixture of nerves and uncertainty meant I was going to play it very safe.

Once dressed the tent was packed away. Although it was about 4.30am there was a mixture of activity on site. Some tents had already been packed and gone, some were half down, some were still up but people emerging and others were exactly as they were when I arrived the night before. Some people can obviously sleep a lot better than me, or need less time to cycle 150 miles.

A quick “Good morning” to my brother and I arranged to meet him down at the start after I’d had my photo taken with the rest of the defunct pancreas group.

Next job was to collect my bike from where I’d put it the night before and deposit my bag and camping gear next to the wagons that would transport them all across to Whitby for collection at the other end. I made two mistakes here. One more important than the other. First small mistake - the small power pack I’d bought to give extra life to my phone and Garmin 810 was packed away rather than into my bike bag. In the end it wasn’t needed as both managed to survive the full journey to Whitby without extra charging. Second mistake was a biggie. I’d read the top tips about insect repellent and packed it in my bag from home but at this point I forgot about it completely. On the ride I didn’t notice it but the week after I was scratching like crazy. If you’re reading this in prep for doing the event; don't be like Dave - spray!

The downhill coast down to the start was a mixture of big nerves and big excitement. I was down there for the group photo and the keen starters had already left by the time I arrived just before 5.15am. Even though there was just shy of 900 riders to get through the start in the space of three hours it didn’t feel rushed or chaotic at all.

The group photo was a great opportunity to meet people I’d chatted with online for the previous few months. a mixture of confidence, BG worries and technology on show but overall everyone seemed to be doing OK. During the day I got chance to chat with a couple of the team on the road and the was another priceless point of the event for me.

And of course Ellie and Matt were there to capture our nerves too!

Amongst the 11 was Jen aka Miss Jen Grieves. A big hats off to her and Ian though as they'd already cycled 5 miles from their hotel for the night before and this was just before Jen had some major insulin pump issues too.

Time to Go!

So after months of pretending it was too far away to worry about it was time to go. Me and my brother approached the start with a steady, but not overwhelming, flow of people. As is customary you look around to see what everyone else is riding, carrying and wearing. I felt OK as I didn’t spot any glaring errors on my kit list. I made a quick nip down to dip my bike in the sea before getting my SPORTident timing card started and we were off!

The first few miles were nice and steady and a case of trying to judge pace to keep plenty in reserve for the rest of the day without going too slow.

On the way out we also spotted a few cycling the other way who’d stayed in hotels in surrounding villages and were now going to the start. As it’s a popular area for events there were a few other direction arrows in place in those early miles but thankfully some event staff were on the junction where the arrows pointed in opposite directions. They made sure we headed straight towards the infamous Hardknott Pass.

Also at this point we joined onto a couple of larger groups and riding alongside them added to the excitement. It also gave a chance to glance admiringly at other bikes on show. “That one costs about £8000” said my brother as another flew past. I was left wondering for a few minutes why the rider had neglected to ask for a roof, two more wheels and an engine for that price. Oh well, me and my more budget wheels would end up at the same place on the same day (hopefully) so no need to get that jealous. OK, I was but I had to carry on anyway!

Hardknott and Wrynose Are Coming

After 8 miles at Eskdale another set of marshals guided us onto the road leading to the Passes. From this point until the bottom of Wrynose Pass the road had been closed by the police for the event. This meant nothing could inhibit our relaxed (!) ride over the next few miles. The scenery continued to provide a stunning backdrop to the slowly building excited nerves in the riders.

Me and Pete stopped at the bottom for a photo with the phone box before cracking on.

We’d agreed beforehand that for the big hills each has their own pace so no point trying to stay together. I also knew Pete was keen to make it to the top without walking whereas I was happy to jump off if needed.

Thankfully today was drier than my last attempt and I got much further up without stopping. To hear the support of others who’d opted to walk earlier than I did as I went past them on the early steep section was fantastic and the event spirit was certainly building. Eventually though the legs were starting to hurt and I decided to jump off for a couple of corners before I fell - I’d been there before! Whether I could have kept going at this point I’m not sure but with 135 miles to go I wasn’t going to prove a point to myself and suffer later because of it.

As the gradient eased in the middle section I, like many others, jumped back on before the final steep tight corners gave me chance to walk again. It’s hard to judge numbers and earlier riders probably had a higher share of riders not walkers, but I’d estimate when I was on Hardknott around 75% had to get off at some point. Obviously any chance of me telling everyone that I’d made it all the way in the saddle were dashed by Ellie lurking with her camera to catch it on film. After the final steepest corner I jumped back on in plenty of time for the glory photo at the top.

Once at the top I reached my brother who was waiting and we took a few minutes to admire the view with pride at getting this far in one piece.

The descent down the eastern side of Hardknott is not one I’d really enjoyed in my training runs and again it was more nerves and constant braking that got me down safely rather than speed and excitement. The tight corners and steepness mean any speed gained has to be killed quickly to keep on two wheels. Thankfully the road was dry and once the last tight corner had passed there is a small fast paced section before a humpback bridge and then the turn left towards Wrynose Pass. Although with the same peak as Hardknott, because you’ve not descended fully from Hardknott, it’s not as far up. Still plenty of riders walking on this one and I joined them too for a section in the middle.

Descending from Wrynose was one highlight of the day for me although I nearly came a cropper towards the bottom. Unlike Hardknott the descent is steady and not really tight bends. This means the chance to build some speed was there and we took it. Many riders went slower but as I knew the road I was more confident. A scary moment came when a cyclist who was riding in a team passed me and then about ten seconds later slowed right down to stop with a teammate who was fixing a puncture on the side of the road. A quick shout of “WHOA!” from me followed by an “Oh, sorry” from him and calmness was restored.

The miles after this passed relatively easily although I did need to take some sweets and a gel to keep my blood glucose up as we went through Hawkshead. I’d been doing OK until now but the steady BG I’d maintained could have been partly stress led so a drop was understandable with the continuous cycling towards the ferry.

Don't Pay the Ferryman

The ferry across Lake Windermere is another special part of this event. It’s also the only part of the route where your time is stopped. As the time between ferries depends on when you arrive it’s only fair that this time is excluded. For us we arrived just as the ferry did from the other side and we got on along with our sisters who been waiting for us while, to use their words, “watching all the different shapes and sizes in lycra”. I've been across on the ferry many times but this is the only time I've seen in filled with cyclists and a few pedestrians only. And this time there was also no charge.

Kendal Feed Station

The ride up away from Windermere was an ascent followed by rolling roads down to the first feed station in Kendal. Here my wife was waiting along with my sisters. The feed stations have a fantastic reputation and rightly so. We obviously arrived at peak time in Kendal as the queue for food was quite large but moved fairly quickly. The choice here was similar to other stops with baguettes filled with ham, cheese, jam and peanut butter along with fruit and packs of sweets to stuff into jersey pockets. I had a sandwich, half a banana and took some sweets for later The water stations were under some pressure though and we chose to avoid that queue until Hardraw where we guessed it would be a little quieter. There was also a coffee cart with espressos for sale but I skipped that to speak with family before getting on the road again.

Post-Kendal Climbs

Being relatively local i knew what was coming up but a lady helpfully shouted as we left “There’s a big hill ahead”. And she wasn’t wrong. The road out of Kendal towards the M6 is a long and steady gradient that climbs for about 3 miles before a drop then a rise again. Once the final summit of this section had been reached it’s a fantastic long downhill towards the M6 and then onwards to Sedbergh. Waiting just after the motorway were our parents and sisters again. This time they had cow bells to add a bit of Le Tour to the day. Apparently some riders passing smiled and cheered while others needed to enjoy their day a little more.

The route for the next section was nice and rolling. My BGs started to drop a little after Sedbergh and another stop with family enabled me a chance to take some of the sweets from the last feed station and get back up before cracking on again. This was one of the few times I felt my energy drop badly purely because of my BG levels.

Hardraw Feed Station

Hardraw feed station came next and this was my personal favourite with some fantastic carrot and coriander soup and wholemeal bread on offer along with baguettes, fruit, sweets etc. Along with the soup I had some melon. Oh that melon was glorious. Melon has never tasted sweeter or juicier!

Also here I saw a friend from my street at home who’d got delayed a little with some teammate woes. It was strange in a field so big and spread out to bump into people from so close to home!

Head Down and Crack On

Time to move on now and break the back of the ride. For me this section was crucial in passing without pain and keeping me in a good mood until the I got to the next feed station and onto roads I’d not been on before.

Again the countryside was beautiful as we passed along gently rolling as we went near the majestic Castle Bolton perched on a hill before hitting the sweetly named Sissy Hill and Scarth Nick.

This was a nasty little beast that I’m sure is thrown in to stop anyone getting complacent about the challenges ahead. The next few miles run alongside the firing ranges for Catterick army garrison and the signs warning of tanks turning added to the randomness of the day.

After this we caught a short shower and my rain jacket came out to protect me although it wasn’t quite as effective as the one I’d left at home. Hey ho, another lesson learnt.

Tunstall Feed Station

Soon after the rain stopped came the feed station at Tunstall Village Hall and another chance to refuel. I know we were starting to take longer at the stops but this was the first one where we sat down to rest the legs and chat with fellow riders while eating the now usual, but excellent, food options.

From a D point of view this is where I perhaps over ate for the first time. The sandwiches and biscuits were just too appealing for me. I didn’t bolus but soon after the stop when I started to ride again and saw on the Libre my BG rising I did a small corrective bolus before focussing on the riding again.

Where's the Ark?

Tunstall to Ingleby Greenhow will be most remembered by us for the rain. Those who finished earlier are known to have said “What rain?” but as we turned over the A1M the black clouds gathered and unleashed a mighty downpour.

After a while we sheltered under some trees hoping it would pass but it didn’t and I agreed with Pete he should crack on to Ingleby Greenhow at his pace and I would do likewise. After about half an hour the rain eased and then stopped and the glorious surroundings resumed with highlights including a cricket match in full swing in what appeared to be the middle of nowhere. I've tried to find the cricket pitch since on Google Maps etc but it doesn't appear to exist!

Ingleby Greenhow Feed Station

The rolling roads continued including an almost lethal left hand bend half way down a hill until the Ingleby Greenhow stop arrived. Without doubt this had the loudest supporters of any stop with lots of people cheering me in. And it felt like it was just for me, which it obviously wasn't but it was good anyway! This was a fantastic lift and those people might not appreciate how helpful it was at that stage. Also here I met an old school friend who was helping at the feed station and that familiar face helped to lift me again. I’d heard before about the pork pies on offer here and they didn’t disappoint.

By this stage I knew my gels were well over stocked and I left them for anyone else to use as they wished leaving a few in my pocket just in case.

It was here also that I cancelled my temp basal so went back to my normal non-riding insulin levels. From this point onwards I managed any dips with carbs alone using sweets and the gels I had left.

The Last Big One - Possibly

For the months before veterans of the ride were keen to warn of the pain to follow after Ingleby Greenhow. The infamous Limber Hill gained legendary status. And this is where I misjudged my map-reading skills. Badly. After a few rolling up and downs came a pair of significant climbs.

In my head they were big enough and the sight of Ellie and Matt lurking again like Gollum with a camera was enough to convince me I’d mastered the monster and from here on in it would be downhill!

Look. See. How happy do I look? The big one has been beaten! Or has it?

After this I got stuck at a junction waiting for a car to decide if it was safe to emerge and Pete who was about 50m in front already got a good run ahead. Tiredness and a total misjudgement of distances meant I got a bit demoralised as I mistakenly thought I’d been ditched in a race to the line. Though I was also still enjoying the ride so settled myself in and looked forward to seeing Laura and my mum and dad at the finish.

Extra Refreshments

Coming through the villages I approached the bottom of a descent and like a mirage ahead I saw my brother stood outside the Arncliffe Arms at Glaisdale with beer in his hand and one ready for me! Now I was at a conflict as I wanted to finish as quickly as possible but, wow, it tasted lovely. A few fellow riders came past looking confused as they cycled on; maybe they were worried they’d missed an additional food stop?

Bottoms up and all that meant we hopped back on refreshed and ready for the coast into Whitby. Err, nup. As we turned under the railway bridge I could see a slope ahead going up to the right and Ellie lurking at the side of the road. This wasn’t a good sign. The fabled Limber Hill hadn't been conquered earlier and had now arrived. With a beer in my stomach and a pair of running/walking camera operators tracking me up the hill there was no way I could bail now. And I didn't. For me this was by far the biggest climbing achievement of the day.

Are We Nearly There Yet?

After this the rolling roads down to Whitby were fantastic. Slowly a group formed and going down the last lanes a group of about 12 started to own the road together. Finally with about 5 miles to go Whitby Abbey and the sea finally came into view. We were nearly there! My heart went out to a pair mending a puncture by the roadside but for me the end was in sight and, just like Starship, nothing was gonna stop us now!

Coming into Whitby the signposting was excellent as it had been the whole way and the finish line was a glorious sight along with Laura and my parents waiting. Getting to the end was emotional but it was a mixture of relief and pride that just made me smile. A lot. We’d done it! We’d biked from one side of the country to the other in a single day. Powered only by sandwiches, jelly sweets, soup and pork pies!

As I crossed the line and shook James’ hand my anger at him for creating a challenging route with more hills than any reasonable route planner would contemplate disappeared, to be replaced by thanks for convincing me I could do it.

One of James’ team spotted the team jersey and asked what my Libre reading was. I really had no idea what i would say but when I scanned and it read 4.2 I was a very happy man. And I got the nod of approval from him too!

Post Race

Next stop was the White Horse and Griffin where my second alcoholic drink of the day awaited. The landlord had been given a warning of our arrival by Laura and made space for our two bikes. By the morning we found out he’d had to make space for another nine!

We then went hunting for fish and chips but by this stage there was only one chippy we could find open. It was doing a roaring trade and every other customer seemed to have a medal proudly on show. Strangely I wasn’t that hungry, possibly because I’d eaten so well during the day.

Bed that night was very welcoming after a long bath and I finally got chance to catch up on messages including those encouraging me to go faster when I was on the road. You can be sure I was going as fast as I could!

Following the day’s slight exertion I set a temp basal of 75% (or -25%) overnight on my Medtronic pump and that worked well with me waking at 8.2 in the morning. Overall it had been a good 24 hours for the BG levels. Though I’m not sure doing it every day is an achievable plan going forward. I did make a slight error the following night though by not temp basaling again and I dropped a little low through the night but managed to catch it with no damage done.

During the day my diabetes was obviously on my mind as usual but nothing to worry me too much. Below you'll see my Libre graph of the day and whilst it's far from perfect it didn't cause me too many concerns allowing me to focus on working out how to keep pedalling.

And as I'm sharing graphs, here is my Garmin data for the day; not fast, but steady.

A Round-Up

So if you’ve read this far you deserve a medal too.

A few thanks before I finish off.

First up James and the rest of the Open Cycling team. Words can’t say how well organised I found the event. Any event of this size is going to have new problems that pop up each year but I know they work hard to minimise these for the year after. On top of this he has repeated his offer of free places for people with Type 1 Diabetes who want to prove that we can do anything. Are you Type 1? Sign up!!!
Secondly the rest of the T1s Go Cycling team who kept spirits going and gave a real sense of ‘team’ even when we all went at our own pace. A lot of faces from Friday to Saturday evening were familiar so they must have done some miles themselves to make sure it went as smooth as possible.
The free images provided by Open Cycling are a fantastic freebie of the day and I've never come across that before in events.
Everyone who gave advice and tips before the big day. For a lot I’ve forgotten where I pick up the gems of information but I am grateful.
The team at Animas for the jersey sponsorship that meant I could easily spot the pancreas deficient on the journey.
My brother Pete. I know he could have gone faster during the day but the chance to ride together for the majority of the trip was fantastic.
My parents and sisters for their support on the way. It gave me a massive lift to see them when I did.
Ellie and Matt from Summit Fever Media who gave me a priceless momento of my day and the months before it in film. I feel very lucky to have that record forever.
And the biggest thanks goes to Laura for tolerating the stupid amount of time I spent training and then drove me up on Friday, met me in Kendal on the day and then was waiting at the far end to give me the thing I wanted most in the world; a big hug and knowing that she was proud of me.

And here is the video to record some of the above in moving images - for those interested in the parts above in italics keep watching after the credits at the end.

So I finish with what went well and what didn’t go as smoothly as it could have done but hindsight is a fantastic skill….

What I did well:

Insulin levels.

Practiced Hardknott a couple of times before the big day.

Cleat covers in pocket for walk up hills.

Booked camping at Seascale and White Horse and Griffin hotel at Whitby well in advance.

Temp basal overnight after the event.

Approached it as an endurance event rather than a race.
Used a Freestyle Libre to track my BGs without needing to stop and take blood out of my finger on the move; not easy!

What I did less well:

Didn't drink enough!

Over corrected stress led BG high on Friday night.

Too many gels in my pockets.
I didn't make sure any new clothing is fit for purpose. Especially waterproofs etc.

Went back to hotel before going looking for fish and chips.

Choosing a room on floor three of the hotel that had no lift!

Packed but didn't use insect repellent.

Needed to train even more!!

If you feel inspired (and entries are still available when I post this) you can find out more about the 2017 event and sign up here - http://www.opencycling.com/coast-to-coast-in-a-day/.

If you've got Type 1 use this link for a free entry - http://www.opencycling.com/coast-to-coast-in-a-day/type1.php

I'll see you in Seascale on 24th June 2017!

D-Evangelism

2016-02-24T11:20:00.004+00:00

OK. Cards on the table time. And I'm not a successful poker player so that phrase is normally followed by me taking up a different game.

I have type 1 diabetes and I've had it for a few decades.
I use a Medtronic Veo (Paradigm 554) insulin pump and have done for just over 4 years. Before that I was injecting multiple times a day.
I also use a Abbott Freestyle Libre glucose monitor for most of the time and like it a lot.
I tend to eat what I want so do not follow a specific style/regime of eating.

All of the above are what I've chosen myself; apart from number 1 and part of number 2, and what's important is that it works for me. Which brings me to the subject of today's missive.

If you speak to anyone with diabetes, especially those who've dipped their toes into diabetes communities, you'll find they have at one point or another been told to try this method, food, insulin dosing technique, injection site etc as it's perfect and everyone should use it. For the rest of today we will call these the Diabetes Evangelists or D-Evangelists for short.

Diabetes can be a funny little monster and over time people can adapt their management (or unmanagement) techniques in a way that suits them the best. Which I find to be fantastic. For me it's a constantly moving set of goalposts and often I'll try different things I've read or heard. Sometimes this can take months or years of dedicated tweaking to be find the best dosage, technology and energy provider (aka food) for them. Well done, you're a star and you are winning. All good.

So what turns these diabetes gods into D-Evangelists. For me it's a simple mind-set change that for them turns their thinking from being proud of what they've achieved, into thinking that as it has worked for them it both will work for others and must be used by others; otherwise they are guaranteed hypos, DKA, bad HbA1c (as that's the best measure of success you know), future early death and complications. To do other than them is just stupid and selfish.

And this is where I start to get REALLY frustrated. When I first delved online seeking diabetes advice one of the early acronyms I came across was YDMV. Now I forget where I read it first so many apologies to the originator but if you're reading this you can know you struck a cord. Your Diabetes May Vary. It's simple but sums it up perfectly. What works for me might not work for you and vice versa.

Recently I've taken to screaming it at my screen quite a lot. In the interests of making this ramble stuck in history and irrelevant in 12 months time I'm going to select a topic that for me highlights this perfectly. But it's also where I'm at risk of provoking people when I'm really not attacking them. Before I start, you the reader must understand this isn't a personal attack on anyone's beliefs or theories and I applaud anyone who has found a way that works for them. Not everyone who does the methods below is a D-Evangelist. There are plenty (the majority and probably you) who aren't and I'm only talking about the D-Evangelists. Not you. Probably. OK here goes. I can hear pencils being sharpened to remove me from Christmas Card lists as I type....

Point 4 above is a perfect example of YDMV and D-Evangelism at its best / worst. There are a few different diet techniques being talked about a lot at the moment. Two examples are Low Carb, High Fat (LCHF) and Sugar Surfing. A focussed D-Evangelist who has tried one of these and loved it will spend a significant amount of time telling people that the only way to live with diabetes (of any type normally) is to dedicate your life and diet to either of the above. And whilst there are dedicated groups for discussion about such things a truly dedicated D-Evangelist will drop a "LCHF/SS would fix this" into any discussion on any vaguely related diabetes topic. It will save the world you know.

D-Evangelism isn't only a diet thing and you can find them lurking anywhere in the DOC. But I truly believe it only takes a small tweak to turn a D-Evangelist into a sensible balanced community member who can be a great experienced source of knowledge for people looking for more information on a topic they are needing help with. But don't worry, we can save them.

All they need to do is change the basis of any advice to; 'you might want to try this it works well for me', from 'you must try this as it's the only way otherwise you will die early, blind and with no functioning internal organs.' Did you notice the subtle change there? Did you? It's only a very slight adjustment but it might possibly engage the reader a little more.

I'll quickly whizz through my list of 5 at the top to show my thoughts on each.

Yes I've had diabetes a while but for me as I got the pleasure so young it's the normal; so I think I've had it easier than those diagnosed in their teens and upwards as they may remember 'normal' more than me. My years gives me experience and memories of weaker technology but I still learn daily from those of younger pedigree.
I love my pump and might not have chosen another when I started but as I had no choice it was irrelevant. I also like the newer 640G having tried it but that doesn't mean I think other pumps are bad and that the big M is the only choice for you if you're looking for a pump manufacturer. The features and design, including a tube so I can't lose it, work well for me. Other features on other pumps may work well for you or the person who is asking you for advice. For me using an insulin pump works but I know for others it's just not for them and MDI is their preference. No problemo.
I like my Libre a heck of a lot too. I find the ability to scan and check, especially on the move, well worth the cost to me. But it's not especially cheap (I'm avoiding a long discussion on relative CGM costs here) and for some it doesn't work. That's fine too. If you're tempted I'd recommend trying it - if it's available in your country - but if you don't want to or don't like it, that's not a problem for me.
Eating fewer carbs does make my diabetes life a little easier but I find grabbing food on the go much easier when not too carb focussed and I quite like biscuits. That's how I roll. Ooo, rolls. Bacon rolls. Mmm. Where was I? Ah yes, if you try another way and it works for you, it's all rosy for me.

So in summary; if you think you could be a D-Evangelist maybe have a ponder on what you think the best way for you to get your message across might be? And if you ever spot me showing traits of it you have permission to shout "D-EVANGILIST" in my close proximity.

I went away and consulted my long-term friend and confidante Alanis and she agreed fully with the upcoming sentence. Who'd have thought it?:

The irony of this post is that I'm trying to suggest to people they should adjust their advice style to something more like the way I do it.

Does that mean I'm a D-Evangelist too?

NOOOOOOOOOOO!!!!!!!!!!!!

Freestyle Libre - Moving Pictures - Part 1

2015-10-13T00:18:00.001+01:00

Well hello there!

Just occasionally I have a gander at the stats behind the blog to see what brings people to my mutterings. I have two posts that consistently rank as the most read and they both relate to the Abbott Freestyle Libre. You can find them here and here and I wrote them last year when the Libre was first launched. Since then I've bought plenty and you may remember James had one on and highly recommended it when we went running with the Medtronic 640G and SmartGuard.

Every detail in those posts might not be covered here so if you've got any questions it could be worth checking there first of all.

Anyway after giving video blogging, or vlogging as the cool people call it, a go earlier in the year with the 640G I thought it was time to resurrect the camera and give it another go. Added to that my co-star kept asking me when we could do it again too!

So below you've got me introducing the Freestyle Libre and showing how to insert and start it off.

Please have a watch then pop back here....

As I said that was part 1 and part 2 will follow towards the end of the 14 days so if you've got ANY questions you'd like answering either drop me an email, leave a comment below or on YouTube and I'll try and answer them in the next vid.

Thanks for reading and I hope you found it helpful.

Dave

The Power of Communication

2015-05-16T11:26:00.001+01:00

Welcome back.

As always I'm writing about diabetes today. Again. However this one is for anyone with a long-term medical condition. What works for diabetes works for other pains in the arse too.

I'm often rambling on about how great the Diabetes Online Community is and how it gives you the ability to connect with people who can share the frustrations and annoyance at living with diabetes.

It also frustrates me that there are potentially vast numbers of people with diabetes who are still travelling along life thinking that everyone else with diabetes has got it mastered and they are the only 'bad diabetic'.

I'm very fortunate that by doing this blog I'm occasionally contacted by someone who is reaching out for the first time and wanting to feel that they are not on their own.

I wanted to share with you an example of this as it's made me feel warm inside at how their life has changed. (Although everything is anonymous I have the person's permission to share this story).

Back in January I got an email from someone who was reaching the peak of frustration with their diabetes. Amongst others things they said to me was:

"I was diagnosed with Type 1 Diabetes in 2013 and feel absolutely defeated! My glucose control is fairly, to put it bluntly, mental. I see my consultant every month (even though it should be every 3-6) and I do everything he tells me, yet he won't give me the go-ahead for a pump despite my conscious efforts still leading to poor control."

This person had only been diagnosed a couple of years ago but was getting more and more upset at how they were being treated by their healthcare team and wanted some advice on whether they had any chance of turning it around. Through exchanges of emails we quickly agreed that they weren't useless and that to move forward they needed to own their own numbers and if they weren't getting the care they needed then this could be challenged.

To be fair to this person, they pretty much knew as much as me but I gave you them the confidence to not be ashamed of anything and challenge where it was appropriate.

I was also very fortunate to be able to signpost them to other sites and groups for further support. In this case I mentioned:

INPUT Diabetes

GBDOC

OurD

This week I received another email from them that just filled me with happiness:

"I feel like singing off of a rooftop as I have met a couple of people my age in my area with Type 1 and it's absolutely invaluable and indescribable how it feels to talk to someone who 'gets it'. You have really opened my eyes to the diabetes world out there and I am ever so thankful! I've met some absolutely wonderful people. Yay!"

Through sending one small email this person now has a local peer to peer support network - which is a fancy way of just saying 'group of friends close by'.

In the space of five months they've turned their approach to diabetes around and by connecting with someone else they've changed their future for the positive. My role wasn't much really as I just gave a few tips and pointed towards other groups that would give them the specific detail they needed to make any changes needed. From this they owned their diabetes again and went looking elsewhere to connect even more.

I feel very fortunate to have been involved but now know that for it to be truly successful this person has to encourage others in the same way. The diabetes community is huge but at the same time small. For some people speaking online and ultimately face to face with other people with diabetes is just not for them. That's fine. But there are plenty of people who don't connect through not knowing about it or a fear of being judged. It's really not like that!

My journey into the online world started in a similar way with the help of Mike at Every Day Ups and Downs and Tim and Alison at Shoot Up or Put Up.

There are plenty of bloggers and writers out there and if you're reading this thinking that you'd love to connect or get help but don't want to be judged or made to feel useless then don't hold back. Most blogs have a 'Contact' button, so use it. Find writers who you like the writing of and let them know it. If you have a look at the links on the right of this page there are a few to start with. It's that simple. At the very least it will confirm to us that we're not only writing for close family - Hi Mum! Without sounding like Billy Graham or Barry Scott it could change your life in such a positive way.

Thank you so much to the person I've been quoting today for allowing me to share and their job now is to encourage others. The power of a community of peers to change individual lives for the better cannot be underestimated.

Thank you, you and yes you, for reading.

Animas Sports Weekend 2015

2015-05-15T11:17:00.000+01:00

Last weekend involved a trip to the fifth annual Animas Sports Weekend at Loughborough University.

After hearing and reading such positive reviews of previous years I knew that demand would be high so as soon as I found out applications were open I filled in the form and got it sent off. Thankfully I was in the first 50 to apply and I'd secured a place! Excitement built over the months and with typical coincidence my biggest bug of the summer arrived the day before. After a little weeping and moping around I realised there was nothing I could do about it so I might aswell just enjoy it anyway!

I arrived at the Burleigh Conference Centre at about 2pm in advance of the 3pm registration. After getting the keys to my room I went and did a quick unpack before nervously going downstairs. Although I'd met a few people elsewhere before the weekend already and communicated online with a few more I'm not a natural for walking into a room of strangers talking and just diving in. So with a few nerves I went back downstairs and started chatting. That's pretty much how the weekend continued whenever I needed to go into a room. There was always someone there to chat with and share experience and pick up a few tips.

You might be able to see me lurking at the back of the photo below. I'd obviously messed up the dress code. Those in green t-shirts were official Animas Heroes and those in blue were Animas staff and volunteers. Slowly I shrunk into my blue t-shirt and got it changed at the earliest opportunity into my white delegates shirt.

Next up we went into our first seminar of the weekend. This was led by the always knowledgeable Dr Ian Gallen and gave a fantastic grounding of information that would be used through the weekend and now in everyday use.

The 'classroom' sessions were always great in that discussions on real-life experiences were mixed in with qualified advice. At this point I'll let you know I'm not going to paraphrase or try and repeat what was said. But I will point you towards the website set-up by Dr Gallen to give advice on diabetes and sport - http://www.runsweet.com/

Following the afternoon seminar we retired to refresh before dinner that evening. The food was marvellous and I found myself sharing the table with many great people including a delightful lady called Ellie. An experienced mountain runner she was an endless source of fantastic tales including self-teaching a diabetes dog (more of those later) and then taking the dog skiing!

Saturday was always scheduled to be a busy and so it proved to be. An early breakfast (7am on a Saturday!) was followed by another seminar led by Dr Alistair Lumb who provided further advice on insulin and carbohydrate management when exercising.

Next up came the practicals. These were to be done at the sporting facilities around Loughborough University. The bus trip on the way highlighted what fantastic options for sport are available there. On the way we passed games of many sports in action including cricket, hockey, football, tennis, netball and quidditch!

The delegates had been split into four groups. I was in group A and we paired up with group B to do spinning first. For those not up on the lingo spinning mostly involves sitting in lines on an exercise bike getting shouted at by the incredibly fit instructors at the front of the room and trying to keep going at the rhythm of the pumping music.

Here's me looking fresh and ready for action. Thankfully there isn't an 'after' photo to compare with.

After the spinning we had a short warm down and then moved on to running. Up until this point my blood sugars had been behaving and I was feeling quite confident as we moved outside. Running is what I like to do the most of any exercise but the spin had really taken it out of me. Rather than taking it easy thinking about the run ahead I'd gone all out and my fitness levels meant quick recovery was going to be a challenge.

As we headed out on the run we split into three groups. In the interests of self-preservation I chose the middle group. This meant we did a steady 5km in about 31 minutes. A few minutes rest for testing in the middle for safety and hypo correction meant we returned not too out of breath but exhausted enough to feel a little like Magic below.

Magic is a bit special. Magic is another example of a diabetes alert dog and is owned by Claire. Magic lets Claire know when her blood sugar is going too low or too high. In the instance below Magic is sharing our relief at the end of the exercise. For now!

My blood sugars on the run dropped to an almost inconvenient 3.1 during the run but had recovered to 5.5 by the end. Not ideal but thanks to the morning seminar I knew the cause precisely. Too much insulin on board.

Next it was time to jump back on the bus to return to the conference centre for lunch. This time everyone was watching the carbs and trying to work out the best way to refuel without causing blood sugars to fly high. I'll admit to failing badly here. My BG went up to 15 and decided to stay there for the next hour. This led to a knock-on problem that we'll come to later.

The next seminar was all about nutrition and was led by an expert nutritionist. As she focused on food only it was interesting learning specifically about diet without many tie-ins to insulin delivery. I really liked this hour and Candice did a great job of keeping everyone interested in the post-exercise, post-lunch slot that could have easily been filled with sleep.

After nutrition came a trip back to the sports hall. On the way we passed a sport that I've never seen before but so much want to do!

Zorb football (soccer) has to be in my future at some point.

Anyway we were on our way to do circuit training and continue to our practical application of what we'd learnt so far. I did say I wouldn't be passing on any tips but this is where I got wrong so I'll explain why. Firstly I'd been shovelling in insulin for the previous 90 minutes to try and correct my lunchtime high. This meant that by the time we arrived in the sports hall for the circuit training my blood glucose had arrived at 8.1 but I had too much insulin still active. Tied to this I'd misunderstood some advice earlier in the day. In common with a few others I'd wrongly guessed that the upcoming exercise would be short-term anaerobic meaning that my blood glucose had the potential to rise. What actually happened was that the high intensity exercise was prolonged so this turned it into aerobic session meaning that blood glucose would drop.

Sadly for me this led to a very quick drop and I had to dip out of the last round of the circuits. The huge advantage of this weekend was the ability to try different things and if it all went a bit pear-shaped there was plenty of expert support around help. In this instance one of the dietitians James kept a watchful eye while I guzzled down the Lucozade to get my numbers back above 4.0 mmol/L (72 mg/dl).

I will say that again the student from the university who led the session was outstanding and fully accommodating to allow participants to hydrate and test at regular intervals. Their enthusiasm and goodwill was unending and are another group from the weekend who deserve a lot of praise and thanks.

After the circuit training we returned to the hotel for a short rest before dinner. It's worth mentioning here that in every moment of non-exercise there was always chance to speak to either my fellow participants, the heroes or the staff about living with diabetes. For me that meant I could speak to Drs Gallen and Lumb about very specific questions I had and they both gave great advice whilst listening to what I thought too. This for me was priceless and worth the trip alone.

Dinner on Saturday evening was preceded by a talk by the wonderful Roddy Riddle who is living proof that diabetes shouldn't hold you back from anything. After his pre-dinner speech I had the greatest fortune to be sat with him at dinner and talk about some more of his past and future challenges ahead. Truly inspirational. Have a read through his site linked to above and then have a look at his next challenge here. 350 miles across the arctic! Even writing that down is mind-blowing!

After dinner was a small awards ceremony with many celebrated including a certificate for one participant in the weekend who'd only been diagnosed for two weeks. I can't imagine what a rollercoaster he'd been on up to Friday but I'm sure by the time he left on Sunday he knew that although it might not be easy, nothing was beyond his reach.

Much wine followed and considering the exercise we'd all taken part in, insulin juggling and wine drinking Magic's owner Claire kindly volunteered to do a phone round at 3am to anyone who wanted a wake-up call for a blood test. Very generous and appreciated by those who took up the offer I'm sure.

Early to bed for me (01:30) but not before I'd chance to catch up with a few more fantastic people and pick up some tips and "don't ever do x" advice. Oh and a few more glasses of red wine.

The next morning was a lie in (8am breakfast, 9am start) and a final seminar to recap and a chance for me to say a personal thanks to a few people. Sadly because I had to return home for some very important non-diabetes stuff I was running out of the door at 10:15 and didn't get chance to speak to everyone I wanted to. So please accept this blog as a thank you for your time, advice and conversation whether you were with Animas, a hero or a delegate.

A lot of people over the weekend experienced blood sugar levels a little higher than they'd normally be happy with. This can be explained that along with all the gorgeous food we were also trying to manage the adrenaline being released. Personally I was so excited to be in this environment that I know my blood sugars rose because of this. This is another example of how keeping the blood glucose line as flat as possible is always a challenge in new environments.

The charge for the weekend is £150. Before I signed up I thought this was steep and wondered if it was fair. Wow! How wrong could I be? Two nights in a 4* hotel, full board with a few glasses of wine on Saturday night. Add on to that worldwide respected experts giving group and one to one advice and the access to world-class sports facilities and you've got an absolute bargain. And the final priceless benefit was the ability to mix with over 50 other people with diabetes and a dog to share horror stories, achievements and comedy moments.

To maintain the intimacy and quality of the program numbers are limited to fifty delegates. But priority is always given to first time attendees. So if you've not been before and you do any form of exercise I would thoroughly recommend it.

As a Medtronic pump user I was a little nervous going into the weekend that everything would be about Animas and pumping. It wasn't at all. There was a lot that was focused on insulin pumps but at the same time there were plenty of delegates who were on multiple daily injections and they got plenty of value from the weekend too. In relation to the brand of pumps, there were many different manufacturers present and apart from some light-hearted Animas promotion there was no offence taken by anyone at my (super-duper) 640G. Added to this there was a variety of glucose measuring devices on show. I had the Enlites to go with the 640G pump, some had Dexcom sensors to go with their Vibe pumps, others had standalone, Dexcom, there were a lot of Freestyle Libres on view but the vast majority of delegates were happily using finger prick blood tests. Once again an example of each person having different needs and preferences.

Once again I'll say thank you to Animas for putting the event on and to all the staff, heroes and delegates I spoke with thank you for your time and thoughts.

Now I need to get the forms for deed poll so I can change my name and go back next year!

Episode 8: The 640G Without SmartGuard

2015-04-17T17:08:00.003+01:00

Welcome back!

This week's photos come courtesy of a couple of weeks a go when on the way to work a stunning sunrise over Ingleborough was simultaneously replicated on my CGM graph!

Just a short written post this week as most of the detail is covered in the video blog below.

This week I've been looking at the day to day usage of the pump and meter. As I discussed in Episode 1 there are lots of cool features but at the end of the day it's the simple stuff that's important. So I've looked at the Contour Next Link 2.4 Meter, how you give insulin for food (bolus) and also set your background insulin (basal) levels.

Look out for Martha's blood glucose estimating skills. Maybe I can market a MGM (Martha Glucose Monitor)????

Apologies for the indulgence of biscuit eating but in the interests of a proper test we needed some nice food to bolus to!

Thanks for watching and please leave your comments and feedback. These are always welcomed along with requests about what to feature next.

Take care,
Dave