It's really not "Them and Us"

This last few weeks has set me thinking about a few things. I did some training at work around Growth Mindset that opened my eyes to some behaviours that I realise are not only not good but completely counter productive and ultimately destructive. The depressing thing is that I noticed many traits in myself and so I began to make a conscious effort to challenge myself. Challenging others has never been an issue for me but there is one of the issues in itself. 

Earlier this week @ParthaKar posted yet another thought provoking blog about diets and shaming (http://nhssugardoc.blogspot.com/2018/06/diets-and-shaming.html) well not exactly. I have a tendency which is sometimes good sometimes bad of condensing things I read down into a simple message that I can absorb and take to heart. What I took from his blog was this "Don't be a dick, accept others for their skills and their passion and respect them and their opinions as you would have them respect you". I apologise to Partha without reservation if I completely missed the mark but that is what I took away from that post. It did however set me thinking on something larger that had been floating around my mind for a while in any case and I will try to put that across here, though likely not very well since I am a marginally okay engineer and not a wordsmith.

I'm going to focus on diabetes care, since this is an area I have a strong vested interest, though I think that what I am trying to put across can maybe be expanded to many other areas. I tend to have untidy and messy thinking that way.

Since I was dropped into this world there have been things that struck me, some of it language, some of it attitude and others.. well I really can't describe it. The #LanguageMatters tag goes a long ways towards crystallising it. While we say that it is Language that matters I think the key thing to realise is that language is a manifestation of thoughts. It is the thoughts that are behind the language that we are trying to get at. Since directly altering thought is tricky, not to mention messy and possibly illegal, lets stick with language since it turns out to be a two way street. While thought dictates language so language has a way to guide and inform thought. Yes us humans really are quite a confused mess even if we think we are above such things.

The greater thrust of the #LanguageMatters movement is focused on getting HCP's to treat us PWD's like people and talk to us as such. Telling us we are "non-compliant" or "failing to meet targets" or "getting bad numbers" has many many poor connotations. I should say that I wholeheartedly agree with the movement and where they are trying to take things. I think in the early days of my diagnosis getting more encouragement and praise for the good I had done and help where I was falling short of the desired targets would have helped a lot. The scare stories did nothing but demotivate me and leave me with a feeling of "why bothers I'm screwed in a few years anyway".

Though as I said before us humans are a messy and disorganised bunch, so I got to thinking that maybe #LanguageMatters works the other way too?

I mean think about it. In an ideal world, you would walk into your annual review, get praise for all the things you improved on then be asked what could be done to help improve where things were not so good. You would then ask for all the latest toys, widgets, tech, drugs, magic "cure" and your Dr would absolutely hand over everything you asked for and 100% support every single bit of it. Awesome right? But the world is all about balance and compromise so you don't get that. You have to muddle through with a sub-optimal set of tools and your poor Dr has to try and support you the best he/she can. When I started to think in this was I cast my mind back to some of my past interactions with HCP's and realised what a prize as*&£e I had been on those interactions. they were fighting the same fight that I was trying to fight but they had their hands tied by policy, guidance or budget restrictions.

Yes the latest great diet idea may work but the risks haven't been fully assessed so it cannot be broadly supported. Well hey, guess what... you as the PWD actually has a huge amount of control over what you can do with the tools you have, free will is great that way! I'm not condoning full on wild-west but if you have the tools and skills to try something different and understand the risks, by all means try it. Feed it back to your Dr / DSN they will likely be as interested as you. But remember they are judged by a different set of standards and rules to you. This can have far reaching consequences to their life and chosen profession. So that's another consideration.

You are looking after you and only you, (unless you are a parent or carer obviously) while they have a larger target to be concerned with and they have measures and kpi's that they are judged on. You may feel like crap when you have worked yourself silly and gotten your A1c from 8% to 7% (which IS great work BTW) but your Dr/DSN will have to look at this and assess the risk while also being really happy that you are making their clinic look awesome. Yes you have done great but if you are having loads of hypos that scares them! I know that I have gotten blasé about hypos but that is just what I have learned to live with. The thing is that your HCP is looking at your achievements through a whole host of other targets and guidelines and filters that they need to consider as well as not necessarily fully understanding how smart you are at doing your calculations ot how good you feel your hypos. It's an imperfect system but that is how the world is.

The thing in all of this (yes I ramble on) is that they are looking out for your best interests in the best way they can with the tools they are able to provide to you. And that I think is where I am trying to go in this, we all want the best tools and HCPs would love to give us the best tools... that will make their lives simpler in some ways and a complicated mess in others, but if it helps us then I have no doubt they will do their utmost to accommodate us. And that's the thing... I say #LanguageMatters and yet even through all of this ramble I have spouted "them" and "us"! We are a team but we get these lines and constructs drawn between us all!

Oh those people haven’t done DAFNE, oh they are on MDI while these people are on Pumps. These are the HCP's that have T1 while they are the "Healthy" HCP's. It's all, for the most part, artificial constructs that we have drawn up to break ourselves into separate tribes when in reality we are all out for the same ends. Granted some are at the bleeding edge, bleeding while others are trying to hold the shields and stem the flow as best they can. We're all on the same side and I think as soon as we can all start to see that #LanguageMatters from all apparent sides the better we will all do at fighting the fight that matters.

I will be doing my best to talk to my HCPs as equals as best I can and try to encourage the same in reply. In essence I will try to have an open and human conversation where we share knowledge, tools and strategies on dealing with a common enemy. I will fail at times I am sure but I would like to hope that the effort will be appreciated. As soon as all of us, PWD and HCP of all disciplines and treatment opinions can start to treat each other with respect and dignity and realise that while we may have different views and opinions on how to fight the battle we are all still fighting the same war but on different fronts, and what works one place may not another.

This whole them and us, be that HCP's vs PWD, Pumpers vs MDI, Finger stick vs CGM, Libre vs CCG (okay that last one I may relent since I still get antsy when arguing with budget vs clinical outcome types) it really all doesn't matter. It is not an excuse for us to be a dick with the person in front of us that really wants to help or meet their treatment targets. We all of us are fighting a small battle that is part of the same greater war and we will not win if we are too busy fighting with each other.

Okay.. done... silly long ramble finished... I'll just leave it here for now and hope that I made some of you take a breath and think about "the other person" in your particular T1d relationship.

Try, try again

Welcome back where this time round in the "Andy quits being a lazy slob and starts to get active" I will be looking ot how things went the second time round with lessons I applied from last time.

So let's do a quick recap on what I learned last time, first off the good:

• Delaying my morning basal shot until after the run and then doing a stepped reduction in basal based on time seemed to work well.
• Sugars were nice and stable during the run

Well that was great and to be honest I was thrilled at the time that I didn't hypo but then it all went wrong after that, so here is the bad:

• Correcting at lunch to bring my sugars down caused a bunch of hypos.
• My dinner time ratio was clearly a bad idea as that too caused hypos
• Night time basal was way out caused me to hypo all night, so not a lot of sleep there.

Well nuts, so I got it more wrong than I got it right. Well that's one view though I will choose to see it a different way and basically see the second list as lessons or wonderings.

What needs to change?

Before I started in the morning I had a really good look through the previous weeks data to try and work out what I would do, I will try to run you through it so you can see my thinking though I should put the caveat on the front of this that you should NOT treat this as a guide as your diabetes may vary.

As I said, it kind of went wrong from lunch time so lets look at that.
BG before lunch was 12 and I was eating 24g of carbs. So I went with my normal 1:1 ratio to give me 2.5UI and then I did a "gentle correction" of 2.5UI aiming to bring me down to around 7mmol/l (1UI drops my bloods 2mmol/l approx)

As you can see that dropped me to 5.7 an hour or so later which seems amazing, for me this is too good since it takes more than 2.5 hours for me to return after a meal. Then at around 17:30 I had an early dinner as was hypo. So clearly my lunch ratio was off or maybe I should NOT have corrected.. okay thats 1 point.

So dinner was fairly carb heavy at 100g, normally evening ratio is 2UI:1CP but due to hypo and the guess that I was still dropping (No Libre or CGM so I have a scalal value not a vector... it's a pain!)

A couple hours later I am hypo AGAIN!
Then we see a pattern where I keep throwing carbs on top but pretty much remain hypo the whole time.
I should mention that I do not really follow the standard guidelines of 15g carbs and then more. I calculate what I need to eat and it usually serves me well... usually.

What makes this a little complicated to work out is that I did not return to a "good" number before bed so it is difficult to tell the difference between where the bolus ended and the basal becomes the dominant factor in all of this.

Bolus first

Since this is all one big experiment I will simplify things and make some assumptions to test.
BG between dinner and 21:30 (when I take basal) remains about the same so lets say that I had 120gC and that 17UI kept me stable. That means my ratio was about 1.4UI:1CP for that... so we will take that forward for next time.

Basal baby

To show you the whole story I need to add an extra view of last times overnight BG's and they are not

pretty... I'm fairly sure that my specialist will have a fit tomorrow at my annual review but I'm still here so clearly not totally unsafe!

Between 21:30 and 8am I was up to deal with hypos a few times. Total additional carbs before breakfast was 25g. Going with on the assumption of 1:10 I will say that I needed at least 3 units less than I took. So I took 16 which means 13UI basal. To complicate matters my night time basal is changing anyway (reducing) so that makes it trickier.

Looking back at my logs from last year it seems to be a year on year trend that as the days get lighter my night time basal drops off, recent night time hypos or low morning seem to back this up so I will go with 12UI next time I think.

And again

I've gone on an aweful lot looking at last time however since I cannot see the future I have to look at the past and try to build a predicitive model from previous data (look at me sounding all sciencey) so this is what I intend to try this time around:

• Back off morning basal and inject after the run since it worked last time
• Make a judgement call about lunch of either reducing ratio (currently 1UI : 1CP so not sure) or do not correct.
• Reduce dinner time bolus ratio from 2UI:1 to 1.5UI:1.
• Reduce evening basal to 12UI

That is a hell of a lot of changes which is going to make it hard to understand what is doing what. Yes that's true however given the number and duration of hypos last time I decided that for safety sake being quite aggressive in backing off my insulin intake is probably the best thing.

How did it all work out then?

To be honest, better that I expected. I had thought that I would spend a lot more time hyper and have

to correct at some point.
Morning started off a little high so I did a small correction since I didn't want to start too high as I figured that would make me feel rubbish.

Levels during the run remained pretty stable again with the small correction I put on (3.5 Units, aiming for about 7mmol) meant I was on target when I finished by 9:48 with 7.8.

Something which did surprise me (even though I didn't notice it last week and it was there) was the rise an hour and a bit afterwards... that's the 17.1 here.
Lunch time came around and I was 12.3, again I was really missing the vector value since I had no idea how fast my sugars were dropping.
Lunch was something yummy (and spicy) from Nandos as we had to go run some errands. I decided that I would dose normally and just ignore the correction since I guessed it was dropping on its own.


Well that sort of worked. By dinner time I have been running high but still in single figures though I think the reduced basal is running low either that or I need more basal and less at lunch... not sure which to go on that one, will have to mull it over some more.

So dinner time and I go with the reduced ratio and add a correction to bring me towards 5 before evening basal.
So basal time and I am running at 4.5 (again... no clue which way it's going) so go with basal of 12UI (last week was 18UI) an almost straight away I hypo to 3.8.
Working on the assumption that this was left over bolus I did a small correction of 5g which should kick me to around 5mmol/l by morning.

It's no morning and I woke up after a nights sleep uninterrupted by hypos and my test came back at 5.7mmol, I will take that as a morning reading any day you care to name thank you.

Where do I stand now?

Well I improved my parkrun time by 7 minutes which sounds amazing, well I guess sit is since I only expected to gain 2-3 but I have now gone from bloody slow to just merely slow now however that's the bonus and I still have more to do.

The key thing I have achieved is that I can now say that with the changes this week I can now do this exercise safely, only 1 hypo this time compared to 6 last time around. I haven't got this dialled in fully by any measure but I am defininitely further forward than I was before and I now have more datapoints to work from.

What next?

I think for now I want to do a few more weeks following this exactly pattern to build up more data. The big reason for making a load of changes compared to last week is that it just was not safe to leave things that way. Now that I am safer I can let things settle a little so I have more information to inform decisions for the further adjustments.

I have ordered up a Libre sensor to give me a little more data even though I know my skin will react but I just need the data. So let's build a bigger dataset to work from and move from there.

Get moving

Okay so I finally did it. After many years of being a lazy git I made the decision to start getting more active and try to be a bit fitter and healthier.

It seemed to me that it is relatively straightforward on the surface of things, you need to:

• Eat healthily and sensible portions
• Get more physical activity in
• Keep doing the above forever

The food side was fairly straightforward, as a T1 I am already very aware of anything that goes down my throat, to the point of it technically being an eating disorder if you go by the letter of the description, that making a few small adjustments was no major thing. The keeping on doing something forever, uhm... T1, I know how to do stuff forever even if I don't really like it.

So I'm already more than half way there... this stuff is easy! Well.....no!

The last time I hit the gym was probably 7 years ago and one of the reasons I stopped was that I just could not get around the crash of blood sugars, combine that with the fact that when I exercise I pretty much lose ALL hypo symptoms. Well, not completely true. While active I cannot feel anything coming on, when I pause between activities then I feel like I am having most of the symptoms so my body is being very unhelpful at both times.

My kingdom for a flat line

Well that's the crux of the problem identified and the thing is again on the surface it should be easy to manage. Test sugars lots and deal with it.
You could I suppose, though you would spend all your time chasing your BG's and likely feel like rubbish a lot of the time, call me strange but that doesn't seem like a sensible approach to keep you motivated enough to do step 3 above!

So what can you do? Well I pulled my logs from years ago when I was still going to the gym (yes I still have them stored on my computer and backed up online) so that was easy for me.
It seems that the way I used to handle activity back then was one of a few ways:

• Eat before the gym, short bolus and then go.
• Take plenty of snacks with me and eat between activities
• Short bolus at lunch (gym after work) and run high all afternoon.

Obviously this didn't work out or I would still be going to the gym today. Based on my notes some of the things that went wrong include (but not limited to).

• Massive hypo after coming off the treadmill (1st activity) and had to scrub the rest of the session
• Activity made me bring dinner up (my notes were a bit more course) so then had panic about not having enough carb in me anymore and so ditched the rest of the session.
• Felt so rotten all afternoon that I didn't feel well enough for the gym.
• Everything went well and gym was fine

Oddly enough based on the notes it seems that the last outcome there was actually in the majority, though it didn't feel like that at the time. Funny how you see things differently when you actually go and look at the data after the fact.

My plans weren't great, what next.

So clearly my original methods were not a great success, obviously more than I thought at the time, so a different approach is needed.
It's completely obvious that this not a completely insurmountable challange since others are managing it, however there is the little issue of #YDMV (Your Diabetes May Vary). What works for one might not for another and all... this T1 thing is complicated, annoying and completely inconsistent.... it's a wonder any of us are still sane. Errr... moving on!

Trying to see what others were doing was obviously a sensible idea, fortunately my diabuddy @Type1Bri started doing exactly this and since he has such a wonder set of links and experience on his site I started there bounced around reading a bunch there and stuff he linked to in order to work out a strategy.

It's basically a navigation exercise

What is the idiot on about now you are probably wondering. I thought we were talking T1 and exercise. Well yes but the principal is similar, please bear with me here. For navigation you need to know a few things:

• Where am I now?
• Where do I want to get to?
• What routes can I take to get there?
• Do I need anything special to travel any of the chosen paths?

So let's apply this to my situation now.

Where am I now?

Ignoring the unfit part, I T1 on MDI taking Levemir for Basal Morning and Night with varying bolus ratios throughout the day wth blood testing done with old fashioned finger prick testing since I get a sever reaction to the FreeSyle Libre. This is a shame since I loved the Libre and wish I could use it. For now I hold out hope that the SugarBeat drops in the next couple of months.
I generally do not eat breakfast (whole other story from even longer ago than T1) and am only a little bit over weight.

Where do I want to get to?

I would like to get rid of the excess weight and be able to happily run 10k in something approaching on hour without feeling like I am about to die.

What routes can I take to get there?

Well this is where the hard work starts since there no short cuts unfortunately my maps are all a bit faded. What this means is I will need to do a LOT of experimenting and take things fairly slow to start with.
ParkRun seemed like a good way to start all this since it's all well organised and I can make the organisers aware of any issues I may have so from that point of view it's all pretty safe.

How did it go?

Yes I know I missed point 4... Well I didn't but it got crazy long and wildly off topic so I cut that and will maybe push it into a different post in future.

Being on MDI makes changing your basal almost impossible, note I say ALMOST. Once it's in it's in so then it IS impossible. However, parkrun takes place in the morning a couple hours after I would normally get up and finishes around an hour later so call it 3 hours.

My first thought was this:

• Don't take my basal when I get up
• Do parkrun
• Calculate an equivalent hourly rate and deduct that from a basal shot to be taken AFTER the run.

So how did that work out? Easy if you take a look -->

So the day did not start well with a 2.8 at waking but no worry I can still work with this and I am determined to do so.

Before leaving the house I am up to 6.7, so getting better and this is mostly expected as I tend to see a rise not long after getting up.

By the time I am about to start at 08:43 things are looking better and I know that I have no basal onboard so for the next two hours I should, if I do nothing, see a rise of 4-5mmol, this is what I am giving myself.

I should point out that I did NOT run this course but did a very brisk walk and then ran a good chunk of the final lap.

at 9:32 I am half way and stopped to do a test (annoyingly this added at least 30 seconds to me time) but 6.3, I can work with that.
Remember, no real hypo awareness when exercising.

09:56, all finished an wandered off to grab a brew and sitting nicely at 7.5. Not too shabby, this is where I took my basal and reduced it down by 4 units (usually 18).

Peer support.

This is something that I have blogged about before, it really is all about the people that get you so I want to send a huge thank you for the messages of encouragement from the #GBDOC. Thank you also for the advice and warnings of what to look out for over the rest of the day.

The support and advice were huge for me and did make me adjust what I was going to do for the rest of the day, though as you will see probably not enough. But it's all a giant experiment and the key thing is I got DATA! I do still want to say a big thank you to Thank you also to @Type1Bri, @Fractis, @PlatinumB2 and @flipper1 for the encouragement.. much appreciated ladies and gents!

So the eagle eyed amoung you will have spotted the graph at the top of the picture which shows me going hypo around 6pm, it didn't get a lot better after that. I was high for lunch so was planning a correction. @Type1Bri helpfully warned me that I would need to likely back off my ratio. What I did was half a unit of my calculated bolus and then took an extra unit out of the correction. Wouldn't you know it that was not far off, around 4pm I was at 5.7.

Then it all went to the gutter for the next 16 hours or so:

I dropped to just below 3 and was fighting it until around 8am the following morning so it was not the most restful nights sleep ever.

During that time I had to take about another 60g of carbs to try and deal with the hypos, so clearly I did something wrong!

Here is the important thing:
NONE OF THIS IS BAD! IT'S ALL NUMBERS AND I INTEND TO DO SOMETHING GOOD WITH EM!

What next?

Well clearly I need to do something about the drop ~ 10 hours after the event and also over night. I guess my liver is sucking up the sugars overnight so I am looking at something like this moving forward.

Drop evening bolus ratio to 1.5UI to 10GC.

Drop my night time basal by 4UI to 14U.

Will this work? I have no idea, I doubt it will make things worse but the point is that it is all an experiment. Everything right now is successful (no bad numbers) for a few important reasons:

• I didn't hypo so bad I needed any help
• I got a ton of data from it all.
• I have a plan for what I will do next week.
• I actually did something!

If you are considering trying to get more active then to be honest I would say just make a start at it. Obviously your diabetes situation may be different but if you take the time to do the navigation work then you might be surprised at where you can get to.

As always, the cool thing about the online diabetes community is there are a load of people out there who will just get you. Many will be going through or will have experienced something similar and will always be happy to help and offer encouragement. So take that first step, it doesn't need to be fast but it still puts you one step closer to where you want to be than you were yesterday!

Make sure to check your feet

Yup, still there. I mean what the hell did that even mean?

Let me rewind a little bit and try to explain a little, because looking back on this singular comment that was in among the various things I was told leading up to my discharge for hospital. I think it stuck with me because it put me very much in mind of Billy Connolly and the "where did you loose it" sketch. Yup feet, still there and I'm watching out for those unhinged nut job surgeons who want to nick em. With a possible alternative of "Oh my god I walked on the grass out in the back garden so now I might lose my feet" depending on mental state and mood.

I suspect that I am still no closer to enlightening you my poor confused audience, though to be honest if you are even part way there you are well ahead of me... save me a spot at the bar if you don't mind.

Get back on topic you fool

Ok ok.. let me try again (again).
First off my first night in hospital was absolute bliss. No really! I mean yes I had part of a domestic plumbing network attached to my arm, I was still mentally dealing with the news and really wanted to be anywhere but stuck in hospital... those places are full of sick people!

The reason why my first night in hospital was bliss was because I slept through the whole night... well mostly. The nurses only actually woke me up twice doing my BG tests. Given that they did at least 6 I have to salute those lovely ladies and gent since they clearly had some scary ninja skills.
But that was the key, I actually stayed in bed and when I woke up I wasn't still completely tired.... like I said bliss!

So why the sarky title and where are you going?

The days and weeks after diagnosis as a whirlwind in many ways and I doubt many of us remember even a small percentage of the details with any real accuracy. I got told so many different things by so many different people, Nurses, DSN's, consultants, dieticians, GP's, Practice Nurses.... the list goes on some more. The things I was told ranged all the way from the people and agencies I had to inform (DVLA, insurance etc) through practical lessons on doing your shots and then on to discussing hypos and how to handle it all.... and yes, I was told to check my feet.

About the last thing I was told as I was discharged was something along the lines of "Your doses are 12U Lantus, then 8U of Novorapid for each meal. Keep your BG between 5 and 8 and be sure to check your feet!"

Bear in mind at this stage I had completely had my fill of being in hospital so I simply agreed and ran for the door, partly because I don't like being in hospital and partly because I was getting a little depressed with some of the scare stories and lectures I was being given.

You know the ones I mean... you have just been diagnosed so now they are going to scare the crap out of you.

In summary, here are the complications you need to be on the look out for:

• Neuropathy (bye bye feet)
• Nephropathy (bye bye kidneys)
• Retinopathy (who said that?)
• [insert other]opathy.

You get the idea.

Hold up a moment there... I just got diagnosed and you are telling me I am basically f****d!
My mental state was already what could charitably be called delicate and I was stuck on a ward with people who already have all of the above and are in for surgery to remove this that or the other and you give me these lectures.

So that is all the "let's scare the crap out of Andy" bit. Is it any wonder I forgot half of it and ran for the door at the first opportunity?

Encourage, Educate, Empower... with structure and consistency

It's short and to the point. But I think this probably gets to the core of what I am trying to say in this post.

What should happen for someone that has just been diagnosed and is still in the system?
My feeling is that the first weeks and months are key to being able to mould a "good person with diabetes"

So how do I think it should be approached?

Before release from hospital

First off break it down into bit sized chunks and lets triage things a bit, before release I believe that you should know the following.

• How to do a blood test
• What the different numbers actually mean
• How to identify a hypo
• How to treat a hypo
• How to keep a good log

So at this stage you will know what number are "good" and what numbers are "bad", though I don't like those labels anyway. So maybe for the new T1's it should be "okay" and "talk to your DSN".
The individual will at least be able to keep a log of their BG and have a basic food diary so hopefully this is a good start for the DSN to start doing adjustments. Additionally they will know what to do for a hypo and so they will be nominally safe in the weeks afterwards.

Starting at first outpatient visit

At this stage you are likely still finding your feet (see what I did there?) and trying to get back to life as usual with this new reality and this is where I think the perception of the DSN's is key since we all adjust and learn at different rates.
Once you are settled with the daily tests, injections etc I think it is important to start bringing in Carb Counting as soon as possible.

Of course DAFNE is a great course but not everyone can take a full week off work to complete it, so the BERIE online course is a great way for people to do some self learning (https://www.bertieonline.org.uk/) of course this is where it is important that the lines of communication back to the clinic are solid since there will be questions and things not understood.

So about now we are likely 6 months plus down the road from diagnosis and we should have at least started to pick up the basics of the following:

• Carb counting
• Dose adjustment
• Calculating bolus ratios (for the more advanced)
• Basal adjustment (for the more advanced)
• Sick day rules (with the help of clinic / DSN)

So combined with the first round of stuff we already have a pretty solid base to work from and we haven't overwhelmed the poor person with diabetes.

Later still

I would say that only a year or so down the line (unless not appropriate) should we even start to talk about the longer term issues to be on the look out for.
Are there risks of all the "opathies" sure, but if the support and education to this point has been good then the PWD should be making a fairly good attempt at keeping things where we want them.
Either way this would be the point to start discussing these issues and what to look out for and I mean in detail.

For example lets go with the title "Check your Feet", how about expand on this and something along the lines of:

• Check for odd feelings on numbness in your feet, maybe keep an eye out when you are drying yourself down after a shower
• If you get any injuries to your feet or legs make a note in your diary and keep an eye on how it is healing
• If you start to notice "insert detail here" then get in contact and we will check it out.

This is just an example but it's more useful, it introduces simple things that can be done basically every single day without any real extra effort and it's not using a big scary tactics.

But some people are just "bad diabetics"

Well I have issue with this label in much the same way I have issues with "good" and "bad" BG readings. A BG reading is a BG reading, it's what you do about it that could be good or bad though this is largely dependant on context.

I think people that are seen by their HCP's as "bad diabetics" are simply people that have not been properly supported or encouraged. They have possibly been lectured and talked at and not taken by the hand and lead in a way that will encourage healthy treatment practices.

Obviously people are different but I think the key is:

• Lines of communication are critical
• Educate with specifics and at relevant times
  Dropping someone that was diagnosed yesterday into a DAFNE course today is insane, we need to triage the key items and educate the individual as they get to grips with each thing.
  You cant carry that 100lb rucksack right now but if I stick 10lb in every now and then you will constantly be getting stronger such that the extra bit is always manageable.
• Encourage truthful logging.
  if we try and get rid of the notion of "good" / "bad" BG's and simply encourage honesty and not berate the patient when they have lots of high or low numbers then everyone will be left with a much more accurate picture of their lifestyle.
• Encourage peer support
  The first other T1's I met were at DAFNE, they were great and all but it was too rigid an environment. I have learned more from people I have met on the various forums, on Twitter and in person at the London meetups than anything. If nothing else it is almost cathartic to be able to relax with other people that understand what your life is like!
• Scare tactics are limited in value
  Also if you keep ramming them down someone's throat they will simply stop listening because they are desensitised or they have simply given up.. both desperately sad situations

Life goes on and you can still do stuff

That was something that took me a while to come to grips with. With everyone giving me horror stories and telling me what I couldn't do you end up quite demoralised. The early days should be the opposite I think, hold up all the great examples that show you can still do anything you want (with planning) take this bunch of T1 heroes (or nutcases, your choice):

• Roddy Riddle (https://roddyriddle.com/) - Ultra marathons
• Diathalete (http://diathlete.org/) - Another runner, adventurer and ambassador
• Diabetes Polar Flight (http://www.diabetespolarflight.org/) - Flying, yup we can fly solo now in some countries!

That's just a tiny tiny list of examples of people who have done amazing things that many "normal" folks wouldn't even dream of.

It's a simple dream I have there I think, that things will change so that new T1's are gently introduced to the nuts and bolts of living like we must but encouraged at every single step. Yes we will screw up and fall, but with the encouragement there we can just keep getting up one more time!

Here's to many more steps with you all my fellow pancreatically challenged friends.

Enjoy the little things

Yes yes, I admit it... I'm a zombie land geek. But it's not a bad mantra all things told.
For instance right now I am sitting in Heathrow Terminal 4, not a great or terrible place but mostly...meh. just finished a fairly tasty steak with a couple glasses of fairly nice wine and now the bill...wtf... Oh wait... LHR T4.

Anyway, the waiter came to do the payment stuff and what a lovely young lad, from Poland and full of tips on places to go... Also he didn't mock me for my pronunciation of a vodka they do that I love. So that's all good.... Also now I have a margarita... Now we're taking!

But it got me thinking about mental states, perception and inevitably T1. Hey you know that monkey troop so enough said there. In any case, having a moment to just so and enjoy my surroundings and not think work and such was a nice change. It allowed me to remember something I had forgotten... Even though I see it everyday...."Enjoy the little things".

I've said it before, easy thoughts and concepts are often hard in the real world, but I think that it is something those of us with the added load of being a pancreas should probably embrace even more.

Let's not sugar coat things (oh god no I will need to bolus) life can be a grind for us at times. But that is what makes it even more important that we look for the small silly, crazy things that make us smile, laugh or otherwise not take the world seriously.

We have a million things to consider before breakfast and then life stars to get really difficult with us... But if we get to the end of the day.... Enjoy the little things.. take five minutes to sit and look at the pretty sky at sunset, laugh at a funny incident on the tube... Then fistbump the person as you get off (that way tonight... Gotta love crazy people) and just go with what life gives you.

Yes we may hold a couple crappy cards in this hand.... But you can still enjoy the little things.

Traveling light

Before T1 I was always quite good at traveling light, a week on holiday would be just hand luggage and no, that didn't involve reusing socks and underwear.

Then T1 came along and that ability seemingly went out the window. Even a brief trip to the local pub now has a checklist worthy of launching a fighter jet off an aircraft carrier.

 

Sticking with that analogy, many years ago while sing a flying scholarship I was taught the 7 P's.

 

Proper Prior Planning Prevents Piss Poor Performance

 

In the spirit of that lesson let's have a look at the problem we have to solve.

 

Maths, maths and more maths.

Let's first start with what I need while I am at home on a normal week (Since that is how long this trip will be). So I don't get myself more confused and go completely crazy let's break it all down into the different things I need in an order of easy to hard.

 

Test strips and lancets

Lancets... 1, easy! Well okay if I'm going to do it lets do it properly and use numbers I wouldn't mind showing my DSN and consultant. 

 

Lancets (Changing Everytime) 7 x 5 for Week Days; 9 x 2 for weekends = 53

Test Strips (Easy. same as lantects of course) (7 x 5) + (2 x 9) = 53

 

Basal Insulin

Even easier, I should have started with this one.

(22 + 16 + 6) x 7 = 308U

 

All good so far, nothing too hectic..... you may want to take a break and have a little run up to this next bit.

 

Bolus Insuiln

On any average weekday my Carb intake is around 40g at lunch, 40-60g at dinner and I don't bother with breakfast. So lets work on the upper numbers since running out on holiday would suck!

Given that my ratios vary this requires a little more working:

 

Weekdays

Lunch : (40g/10)  x 1 = 4UI (+3 For Test Shot) = 7UI

Dinner: (60g/10) x 2 = 12UI (+3 for Test Shot) = 15UI

 

Weekend:

Now maybe I have some breakfast so again lets go worst case and call it 50g each day. Lunch tends to be variable and I sometimes skip it and dinner can be higher one day and light another. But we are talking worst case.

Breakfast : (50g/10) x 1.5 = 7.5UI (+3 For Test Shot) = 10.5UI

Lunch: (60g/10) x 1 = 6UI (+3 For Test Shot) = 9UI

Dinner : (80g/10) x 2 = 16UI (+3 For Test Shot) = 19UI

 

Adding all of that up for a full week then looks something like this:

Breakfast (10.5 x 2) = 21UI

Lunch (7 x 5) + (9 x 2) = 53UI

Dinner (15 x 5) + (19 x 2) = 113UI

 

So at home that gives me a weekly total of (worst case) 187UI

 

Well what does all of this look like, given that every single shot will include a pen tip so we will also need 30 pen tips.

 

All up for 1 week we are looking at:

308UI of Levemir, a pen and a bit

113UI NovoRapid so just over a third of a pen

30 Needles

53 Lancets

53 Test Strips (a pot and a bit)

 

And all of that looks a little like this:

 

 

Holiday!

Well okay maybe I did it a little simplistic and didn't cover things like correction doses and the all important supplies for hypos, but I think it is a fairly close approximation. Looking at my logs my average daily bolus for the last few weeks has been 20-34UI per day so allowing for that I should probably say I need to add another 10UI each day to cover for corrections, but this illustrates the importance that you keep a log of EVERYTHING and more importantly you actually go back and look at the data you have gathered.

 

So holidays become a lot more tricky but I tend to simplify things for myself and assume it is the ultimate weekend and I am going to pig out, so lets start there since it is easy:

 

Basal is same so no worries (actually may be lower if I am doing active out doorsy things.. but remember, worst case)

 

Bolus: 38.5 (call it 40) x 7 Days for my hols: 280UI

 

Yikes almost a whole pen.

 

What if?

Lets be honest chances are you will find all sorts of yummy things to eat and drink and so we probably need to consider that.

Next up, the thing we REALLY don't want to think about but absolutely should.

 

What if I get sick?

No one wants to be in hospital with DKA when you are at home, away in a foreign country where you don't really know the systems and it will likely cost you? Hell no!

So consider that too.

I work on the assumption that I will only be able to hold out for maybe 3 days before tiredness will get me so lets just go with DAFNE guidelines:

 

20% TDD every 2 hours plus usual QA and BI so that would mean I need:

 

77 x 0.2 = 15.4UI, lets call it 15 and don't forget the 3UI for test shot

 

So my total sick day insulin stock would be  (18 x 12) x 3 = 648UI (OUCH!)

 

In reality I would likely only do 2 days so call it 432UI, but that is still a lot.

 

Adding it all up

For the hols I will usually add 30% on just to be safe and then follow the recommendations of my DSN and DAFNE and take double what I would need, so lets add all that up then:

 

Basal : 308U x 2 = 616UI which is 2 and a bit pens. Lets call it 2 new and the remainder of my active

 

Bolus:

Estimated 280UI x 2 = 560UI which is 2 refills

Sick Day: 432UI = 1 and half refills

 

Totals: 992UI, or 3 and a third refills.

 

Blimey... all that for a week?

 

Back to the real world

So the numbers are quite sobering

But in practice it doesn't actually work out to be all that bad.

 

For starters I generally have 2 bolus pens on the go at any one time. One that lives at home and one that comes with me. Depending on how much I have in those I will likely have almost a full pen or a pen and a bit between those when I take off.

 

So what will I be taking then?

2 x Bolus Pens (1 full, one half full)

3 Bolus Pen Refills

1 Already in use Basal Pen

2 Fresh Basal pens
Frio pouch

2 Test Meters with part used pots of strips

2 Fresh pots of test strips

A good handful of lancets (High tech measuring device)

1 Box of pen tips

1 Ketone test meter (my health authority is awkward about me having the BG strips for that meter)

All my others pills
Needle Clipper (Longer trips I just throw a sharps bin in my checked luggage)

Hypo treatment

Hospital letter

 

And in the real world that lot looks something like this:

 

 

Hmm, starting to get serious now. How on earth does that lot become travelling light?

A nifty little wash bag and s misspent youth playing tetris is how!

And there we have it:

I should explain the wash bag goes in my rucksack everything else I carry on me. That way worst case I know I have basal and bolus insulin with needles (about 9 crammed in the blue pouch and my tester pouch) to last a couple of days.

Not that I will likely ever allow them to separate me from my little blag bag that holds my personal pharmacy :)


Yes I am a bit short on hypo treatment but I will get some jelly babies at the airport after security.

All up my week away looks like this:

So like I said way back at the beginning it is all about the planning. While I gave some example numbers here I actually based my packing on my logs for the last couple of months and added a bit to allow for the food I am likely to be eating.

This kind of planning and packing has served me well so far and I have managed a fair few places like this, Spain, Spanish Islands, Greece (and islands) South Africa (several times), Seattle USA (several times) Florida, New Orleans, Australia, New Zealand and a whole bunch of places around the UK.

Obviously always make sure you have suitable insurance and if possible do some research on availability of your supplies where you are going, a little effort now means a more relaxed holiday later and out T1 is just a slightly annoying travelling companion.

Enjoy your hols folks!

Happy travels!

 

Where did it all start?

It's a simple question but like the condition it tends to be a more complicated answer. There is the obvious diagnosis day, but that isn't really the start of it if we are honest with ourselves now is it?

 

So where do we start?

Do we delve into genetics and look at family history... Well it is an obvious place to start but in my case it is a dead end... In many ways.

Cutting to the short story is that there is no history in my family that we could find of any kind of diabetes. In fact not really much medical history of any kind in my family that is hereditary.

 

Where do I start in own mind?

Well going on the evidence base available to me, I have a history of autoimmune conditions that is unique to me.... Yay me!
I was diagnosed with Graves disease in the mid 90's and boy did it do a number on me.
Massive weight loss, often tired, messed up sleep..... Wait a second this sounds familiar. Never mind.

 

So after a few years of that little joy ride that sent me on many different directions including down the line of suspected insanity, as far as I could tell at the time, I was nuked.

 

No really! They gave me a capsule with a radiation symbol on it while the tech hid behind a shield at
the far end of a long room while wearing a lead apron while telling me it was "perfectly safe"....... To whom exactly?

Well yes they were mostly right... After a couple of rocky months at any rate. And that was the end of that, or so I thought.

I really should have paid more attention to the fact that when I went for hospital appointments most of the people I met and spoke to where T1.
No, I am not saying the is a causal link, but definitely a correlation! But I digress and have gotten ahead of myself again by a decade or so.

 

Fast forward a decade or so

Life is great. Well mostly great but I have very few complaints. The wonderful girlfriend who looked after me when they nuked me (I think I still need to pay hey back a lot more but please don't tell her) had now foolishly married me. I like where I live and love my job. I look forward to Monday mornings! Hey you are reading this, how crazy are you?

 

I find myself walking through the arrivals hall in Johannesburg, heading for a short break to see my good lady as she is working a contract in South Africa at the time. We last saw each other probably 6 or 9 months earlier during which I had a brief bout of food poisoning though nothing too crazy.

As I get into the arrivals hall and spot each other I notice a variety of expression flash across her face, but I just got off a long flight and don't have the energy or inclination to worry about it because I am just glad to see her again.

 

I was later told that she was completely shocked at the state I was in. Kacy stated that I was clearly very sick even if I didn't know it myself and she was rightly worried about what could be up with me. I guess the clothes hanging off me should have been a clue.
 

Let's count off the symptoms shall we?

• Massive weight loss, around 20-25kg
• My mouth always felt dry, "Glue Mouth" I called it.
• Always needing the toilet for a pee
• Hugely thirsty all the time.
• Waking up multiple times a night for the loo and to down a pint of water
• Blurry vision
• Easily fatigued

I mention the last one the way I do as I tend to be quite stubborn so will just push through a little bit of tiredness if there is something to do.

D Day

Fast forward a couple of weeks and I am now back in the UK. Before leaving SA I was made to promise to go see the Dr when I got back as I obviously had diabetes.
So off to the Dr I trot for a late appointment after work, diabetes not being the main reason I am going. The main reason was 2 days into the holiday I started to get pins and needles in my hand that just wouldn't go away. I think my words to Dr was along the lines of "Oh while I am here my wife insisted I get tested for diabetes because of *insert symptoms here*" GP digs out a meter and does a test.... [HI]. Now her attitude changes and she wants a urine sample and has called for the practice nurse who "has a much better meter". Business done, nurse does another test [33.6], "Is that bad?"
Meanwhile GP has looked at ketones and is already on the phone. As she hangs up the conversation then goes something like this:

GP: Okay Andy you will need to go to hospital.
ME: Alright I will keep an eye open for the appointment letter then.
GP: No, you misunderstand. You need to go to hospital right now!
ME: Oh, I didn't think it was that serious.
GP: It is, you have to go now. Go to A&E and give them this letter.
ME: Okay... So what is wrong with me then?
GP: You have Type 1 Diabetes, no question about it.

Off to A&E it is then, it's a shame as it's a lovely spring evening and I was hoping to take a wander to the pub for dinner. While I wander back home to pick up a couple of things I try to get in contact with Kacy to let her know the score, no luck there though

And there you have it, a rather dry and direct medical assessment for the day my life changed. In reality it actually properly started 3+ decades earlier and the probabilities firmed up 1 decade ago. Not that it really matters in either case. T1 kicked down the closet door when it burst out and threw test strips all over my room.. and my car.. and my office. Actually everywhere I go it seems.

I could go on about the rest of my D day as the hospital itself was a laugh riot though I suspect I have put half of you to sleep already so another day I think.

Thank you again for being patient enough to put up with more of my pointless mental ramblings, I hope to settle at some point and do a better job though I make no promises.
Until another time keep on keeping on fellow special folk :)

/A