In a couple of brief conversations of late I have been reminded that we all end up with low days (or weeks). The #GBDoc on Thursday 18th June had a question along the same lines and got me answering with how I deal with it only I seemed to put it in a way that is rather more thoughtful than my usual profanity infused gibberish (think the cat might wave walked over the keyboard while I was typing). It came as this:
"When it all gets too much sometimes looking at your feet to see where you are stepping instead of the horizon to see where you are going seems easier. Thing is, you are still heading in roughly the right direction most of the time"
That's the key I think. When it is hard, break it down into what you can actually do right now and do it the best you can. You are still making progress it just doesn't feel that way until you get the energy to look up or someone else who knows roughly how you feel points out to you that you are, actually, still heading in the right direction. The rest will often tend to itself or wait in any case.
Isn't it great to have a community that just gets it?
Anyday T1
Mindless T1 related(ish) ramblings of an engineer, former many things.
Thursday, 19 July 2018
Tuesday, 17 July 2018
A pump all of my own - Go Live
The day has come and gone... sort of, and I am now the proud owner of a pump... my pump, not a loan pump from the clinic... this one is mine.. I think I shall call it Bob, until I don't.
Now that it is all my equipment I am less shy about hauling it all out the bag and having a really good look at everything that comes in the box / case. And it's a real snazzy case too (insulin pen for scale):
Continuing with the un-boxing it seems that the manufacturer SOOIL are not messing about, they have crammed almost everything I could think might be even vaguely useful into this case. Some I may use some I definitely will not but here is what it looks like all neat (without the pump... I'm not putting Bob back in the case he will get lonely!)
By my reckoning that supply around 2 weeks worth of reservoirs in the case no infusion sets though I have boxes of those from the clinic in any case. You also get a handful of batteries and by my count about 6 different pump carriers.
Hauling it all out and laying it on the table gives a better idea of what comes as standard with the DanaRS it seems. Below all laid out with some annotations below of what is what.
Now that it is all my equipment I am less shy about hauling it all out the bag and having a really good look at everything that comes in the box / case. And it's a real snazzy case too (insulin pen for scale):
Continuing with the un-boxing it seems that the manufacturer SOOIL are not messing about, they have crammed almost everything I could think might be even vaguely useful into this case. Some I may use some I definitely will not but here is what it looks like all neat (without the pump... I'm not putting Bob back in the case he will get lonely!)
By my reckoning that supply around 2 weeks worth of reservoirs in the case no infusion sets though I have boxes of those from the clinic in any case. You also get a handful of batteries and by my count about 6 different pump carriers.
Hauling it all out and laying it on the table gives a better idea of what comes as standard with the DanaRS it seems. Below all laid out with some annotations below of what is what.
A - Spare Batteries
B - Solid plastic carry case
C - Leather Carry Case
D - Easy Setter (it's a Dana Thing)
E - Spare Scroll Plunger (again, Dana thing)
F - Spare battery and reservoir covers
G - Pump pouch (think this is meant to clip to a bra perhaps)
H - Neat case that had a bunch of the smaller bits in
I - Key for tightening / loosening the battery & reservoir covers
J - Another pouch though this one you wear as an over the shoulder sort of thing
K - Bob!
H - Shower pump pouch (think I'll just take it off)
I - Manuals etc
J - Yet ANOTHER pump holder, this on in a belly band type of rig
K - Micropore tape x 2
L - Mefix tape / patches (never heard of em)
M - Tegaderm patches
N - Spare reservoirs
The above doesn't include the other bag I had which approximately 30 additional reservoirs and infusion sets which have basically filled an entire drawer in my bedside table... so yeah... got loot!
The good & bad
I'm going to do this the other way round and cover off the bad, well I say bad they are more annoyances I guess.
Bad(ish)
Priming is fiddly!
I am not even joking here, there are a bunch of different steps to prime this and get it all up and running again and I think even on a good day I will be talking 10-15 minutes with some properly fiddly steps. Don't believe me, it's close as makes no difference to the DanaR which you can see for yourself here: https://www.youtube.com/watch?v=QQf0Vy_gwnM
To be fair the part where you wind the scroll in is done by the Easy Setter and it doesn't seem all that awkward. I am yet to try and do it all manually.
(EDIT after 6 months) Okay so it's not THAT bad. Once you get your technique down a set change is just over 5 minutes.
(EDIT after 6 months) Okay so it's not THAT bad. Once you get your technique down a set change is just over 5 minutes.
It uses proprietary infusion sets
A minor annoyance since this equipment is not something you can just go and pick up from the pharmacy if you are running short anyway but it is not using any standard connectors. That said they do have a fairly good range of cannualas and tube lengths and the default that I am using is a nice 360 degree spinning affair which is actually pretty comfy.
You can hear the scroll motor run
This is my first ever pump so I do not know if this is standard. I have been wearing the pump tucked into the top pocket of my shirt and I can occasionally hear a high pitch sound of the pump running, it is not loud but I do notice it sometimes though to be completely fair it's not bothered me once in the last week.
It's not possible to download pump data right now
Okay this is more one for the clinics and was actually one thing that nearly stopped my clinic from offering it, thinking it was possibly a little too soon. The reason for this, as best I have been able to divine, is that the phone Apps have not been CE certified yet so the pathway to connect to the pump to pull data is not officially there yet. NOTE: I say officially since this is not as big a deal as you may think and gets covered in one of the GOOD sections.
It uses some proprietary battery
The batteries or a little odd at first though I thought it highly unlikely that a pump manufacturer would go to the expense and effort of inventing their own battery. A very brief search reveals that it's a fairly standard battery with a minor mod. (see: Blog from Bionic Wookie) That said again it's largely academic since you get the replacement batteries as part of your regular supplies from SOOIL.
Good
This sucker is light!
I am not kidding, I dropped it on my kitchen scale complete with 240U of insulin in the reservoir and it maxed out at 73g. Yes I know that the Omnipod is probably lighter and maybe there are a couple of others but for a pump with the features this one has it's quite impressive.
Backlit LCD Screen
This may seem like an odd thing to put in good. "What, old fashioned LCD with no pretty colours?" yup! Why is it good, well easier to do a list:
- It uses a ton less power than colour screens
- It's lighter
- You can read it in bright sunlight (been useful the last week)
- Backlight is not so bright it disturbs your partner if you are making a correction at night
Full bluetooth connectivity
That's right, it seems to always be in discover mode when you wake it up though you have to approve any pairing requests on the pump.
IT JUST WORKS WITH OPENAPS
Yes I saved the best for last. This little pump, from the factory, will happily work with OpenAPS (AndroidAPS to be completely accurate) and does not require any funny tweaks or hacking or firmware. Fully warrantied by the manufacturer you can Loop with it. Of course this added a few other good things.
Remember when I said that it's not currently possible to download this pump for the clinic? Who cares? Once I hooked it up to AndroidAPS EVERYTHING I do ON THE PUMP gets synced back to my nightscout and my clinic can then see it in near real time. I have spent a lot of time talking to my pump educator about this and showing her all the features as well as the reports she can pull and she seemed to think it was cool and gave her everything she needed to be able to monitor and support me. Have I mentioned recently that I think my pump clinic are awesome? No? Okay my pump clinic are AWESOME!
[EDIT] A couple weeks in now and my clinic properly love how AAPS integrates the pump with NS as they can keep an eye on things and offer suggestions over email without having to get me to do an upload first. I think this means that we have managed to get most of my rates nailed down in record time
[EDIT] A couple weeks in now and my clinic properly love how AAPS integrates the pump with NS as they can keep an eye on things and offer suggestions over email without having to get me to do an upload first. I think this means that we have managed to get most of my rates nailed down in record time
Okay so I am having to explain things and teach the educator all about this tech and how everything hangs together but you know what? I'm fine with that #WeAreNotWaiting and it seems my clinic at least is happy to support me and learn from me with this.
Finishing now I promise
I want to make a few things completely clear before I sign off:
- I am not jumping straight in to looping as soon as I am live on a pump. This is silly an irresponsible since I think it is important that you understand all about the tech that is keeping you alive. This includes how to run it by hand when the tech fails (yes, "when"!) so it's important that you know what you are doing and even have a plan for when the pump itself fails. @grumpy_pumper did a guest blog for @RenzaS on just this subject last week(https://diabetogenic.wordpress.com/2018/07/08/wwgd-the-back-up-plan/). Most convenient timing.
- I did a lot of investigation on AndroidAPS and made sure I fully understand what needs to work and how it all hangs together, so I know what to kick when stuff breaks!
- I'm being completely open and honest with my clinic about my intent and what I am doing. At the same time I am making every effort I can to include them so that they can learn and understand what it is that the #WeAreNotWaiting community have achieved. It's very clear to me that we are all working towards the same ends and making "them" and "us" distinctions with our clinics helps no one and only alienates people that genuinely want to help us. They just have different restrictions to work under so bear that in mind.
- Finally the important thing, I'm taking all the tips and leanings I can from other pumpers (not just loopers).
So there you go, that's me 8 hours into pumping and so far no major disasters. Had a near hypo before lunch now just dipped down to 11.5mmol/l (207mg/dl) following lunch, though that is not uncommon. The coming weeks will be interesting and exhausting I am sure but once I am happy I more or less know what I am doing I will start doing what many others have already done and close the loop. #WeAreNotWaiting and currently, a little as a time, neither am I!
Thursday, 12 July 2018
What you don't think to ask
Okay first 24 hours of pumping (saline) are now complete and yet again I cannot the convey just how amazing my pump educator at Addenbrookes has been.
Before I even got back to the office she had already emailed me a bunch of stuff we had discussed and by that time I had also realised a whole bunch of things I forgot to ask.
Several emails to and fro and I had a load more information and had updated my GOTH Plan (GOne to Hell) to include the contact details and processes. Excellent, probably a little overboard but I like to have all the details I may need before I REALLY need them.
All things going well, having pump attached not really an issue. I tried belt clip even though no belt on my shorts which was great except the clip was digging into me (really need to lose some weight) so reverted to tucking in my pocket. This was great until I reached into my pocket to check something on the pump out of curiosity and found that I was tugging at the pipe work which was just annoying more than anything... need to think this one through.
Something that I did kind of do what jot down a few questions I wanted to ask at the clinic and then completely forgot about them (must have been something new and shiny distracting me) and only got a few answered. As it turned out the questions I had noted down to ask were more or less of no consequence as it turned out however a couple of days in I have been helped in equal measure by both the pump clinic and the #GBDoc, sometimes you just can't beat real first person experience talking.
So what are some of the questions I didn't ask at the time but have since and gotten answers for, bold is the ones I will go for:
Before I even got back to the office she had already emailed me a bunch of stuff we had discussed and by that time I had also realised a whole bunch of things I forgot to ask.
Several emails to and fro and I had a load more information and had updated my GOTH Plan (GOne to Hell) to include the contact details and processes. Excellent, probably a little overboard but I like to have all the details I may need before I REALLY need them.
All things going well, having pump attached not really an issue. I tried belt clip even though no belt on my shorts which was great except the clip was digging into me (really need to lose some weight) so reverted to tucking in my pocket. This was great until I reached into my pocket to check something on the pump out of curiosity and found that I was tugging at the pipe work which was just annoying more than anything... need to think this one through.
Something that I did kind of do what jot down a few questions I wanted to ask at the clinic and then completely forgot about them (must have been something new and shiny distracting me) and only got a few answered. As it turned out the questions I had noted down to ask were more or less of no consequence as it turned out however a couple of days in I have been helped in equal measure by both the pump clinic and the #GBDoc, sometimes you just can't beat real first person experience talking.
So what are some of the questions I didn't ask at the time but have since and gotten answers for, bold is the ones I will go for:
- Where do I put the pump when I am taking clothes off and have nothing to clip the pump to? Here is what I tried and what was suggested.
- I tried putting it on the chest of drawers but it fell off when I bent over (only 60cm tube)
- Take it off (DOH!.... At the time it just did not occur to me)
- Hold it under your chin (Good idea but I suck at that trick)
- Drop it on the bed (Might have worked but short tube)
- Do I need to update my letter for airport security?
- Yes, clinic sent over electronic copy and will put a couple printed ones in post too.
- What do I do to order extra consumables?
- This seems to be clinic specific from what I have seen. At my clinic they have it centralised so that they can see who is using what (also some cost savings too apparently) but they did explain that they have found where people needed different cannula purely by seeing that patient X is ordering a lot of them.
- Educator sent over main mailbox for re-orders as well as direct email for person responsible as well as her phone number. (Sweet!)
- Am I okay to order extras when I do not need them to stock up for travel etc?
- Of course (Duh! Still worth checking I thought)
I am under no illusions that this list will grow a LOT since I am still not pumping insulin. I should say that the leaflet that the clinic gave me about what to do on the days leading up to the switch was excellent. Obviously it changes depending on the basal insulin you are taking but they covered off all different ones in use and what to do as well as providing a checklist of what you need to bring along on the day.
I may have said it before but the communication with the pump educator at the clinic has been fantastic. Any question that popped into my head I fired off an email and got a response really quickly. I did wonder if all these random questions would make sense being compiled into a leaflet but to be honest I think I have liked how I could reach out to the clinic as easily and quickly as I have been so that has been a lesson learned there too!
Next steps in order are:
- Unsupervised solo set change (tonight 😲)
- Start pumping the strong stuff (next Tuesday)
So interesting times ahead, this should be fun!
Tuesday, 10 July 2018
Step 1 - Practice with Saline, aka a Soft Start!
Okay day one of being hooked up to a pump and so far so good.
There was a minor bit of drama yesterday when clinic phoned me up because my pump had not arrived yet, luckily since I am running saline for the first week it's actually no major issue with me borrowing the clinic demo pump, so that's what is attached to me now.
I will admit that when I heard that they do the switchover as a 2 step process with the first week done pumping saline I was a little annoyed and impatient. Thinking "well why the hell are we doing that, it's just silly!" On further reflection I realised it's actually a rather sensible way of doing things since you can then "pretend" for the first week while you are still all good with the pens etc so there is nothing life cirtical going on in case you do run into some kind of issue with the new equipment.
The logistics issues that happened further cemented my view that this is actually a really smart was of doing this kind of thing since it gave us that degree of flexibility and I didn't get delayed or anything like that... which is awesome!
So how did we get on, well first off I went with the DanaRS, and it's a cute little pump, supposed to be one of the lightest around too!
One of the major selling points with the DanaRS is that you can run it with an App from your phone, or with AndoirdAPS as it has some open API's to manage it. Well that's what I thought but the AnyDana-A didn't want to see the pump so maybe this is the whole "waiting for CE approval" thing rearing it's ugly head. No worries, I have AndroidAPS installed to I fired that up and connected first time no issue... sweet!
So after running through the things I had learned in the videos for priming the pump, which is a faf compared to many though the AndroidAPS option trumps that, I had everything all primed and confirmed as good by my pump educator. Time to plug in and get started then.
That is where we are up to now, my new (loaner) pump happily sitting doing it's thing and I generate even more data. This is really quite the soft start and hopefully I will be all used to sleeping with this thing attached and then next week the real work starts. Let's see what happens then.
I would like to say that my pump educator Helen was absolutely fantastic and was completely open to looping and was very interested in all aspects of it. We dug through the various parts of my nightscout site and we were both impressed when all of my profile settings just got applied to the pump, super slick!
There was a minor bit of drama yesterday when clinic phoned me up because my pump had not arrived yet, luckily since I am running saline for the first week it's actually no major issue with me borrowing the clinic demo pump, so that's what is attached to me now.
I will admit that when I heard that they do the switchover as a 2 step process with the first week done pumping saline I was a little annoyed and impatient. Thinking "well why the hell are we doing that, it's just silly!" On further reflection I realised it's actually a rather sensible way of doing things since you can then "pretend" for the first week while you are still all good with the pens etc so there is nothing life cirtical going on in case you do run into some kind of issue with the new equipment.
The logistics issues that happened further cemented my view that this is actually a really smart was of doing this kind of thing since it gave us that degree of flexibility and I didn't get delayed or anything like that... which is awesome!
So how did we get on, well first off I went with the DanaRS, and it's a cute little pump, supposed to be one of the lightest around too!
One of the major selling points with the DanaRS is that you can run it with an App from your phone, or with AndoirdAPS as it has some open API's to manage it. Well that's what I thought but the AnyDana-A didn't want to see the pump so maybe this is the whole "waiting for CE approval" thing rearing it's ugly head. No worries, I have AndroidAPS installed to I fired that up and connected first time no issue... sweet!
So after running through the things I had learned in the videos for priming the pump, which is a faf compared to many though the AndroidAPS option trumps that, I had everything all primed and confirmed as good by my pump educator. Time to plug in and get started then.
That is where we are up to now, my new (loaner) pump happily sitting doing it's thing and I generate even more data. This is really quite the soft start and hopefully I will be all used to sleeping with this thing attached and then next week the real work starts. Let's see what happens then.
I would like to say that my pump educator Helen was absolutely fantastic and was completely open to looping and was very interested in all aspects of it. We dug through the various parts of my nightscout site and we were both impressed when all of my profile settings just got applied to the pump, super slick!
Monday, 9 July 2018
What have I done?
There is an old (tongue in cheek) saying in software
engineering, and systems engineering to be honest, that the definition of an
upgrade is “Take the old bugs out, put new bugs in!” It is that situation I
find myself in this evening on the eve of the switch the pumping.
From diagnosis pumps seemed like the nirvana of diabetes
control, even all the people I interacted with after diagnoses (non-D) seemed
to know about it and it came across as the solution to all things. Naturally I
immediately looked into this since learning new shit is something I seem to
like. Even though these days it feels like the more I learn the more I forget.
One thing I realised very quickly on my own was that all pumps were, is a more
finely tuned version of what I was doing (MDI) min many ways.
I ruler is a great device for measuring something if all
your care about is close enough to the nearest millimetre. A micro meter is stunningly
amazing at getting to a thousandth of a mm if you care about it but there is
the thing. You have to care and you have to want o do something with that
ability. Having a 200mph Ferrari is great but it’s a complete waste of time if
you are going to pootle down to the shops for your weekly shop once a week.
It is all about the right tool for the job and the person
using them having the skills and desire to use those tools to their best
effect. I think many T1’s have certainly got the desire though I wonder if the
knowledge to make the most of these finely tuned F1 cars of the diabetes world
is there at the start? I guess when I come out of clinic tomorrow I may have a
more informed opinion on that but right now, a mere 12 hours before I am to
make the switch I find that I am filled with questions and self doubt.
What they hell have I done? I have managed 9 years with no
major incidents, no DKA (there were some close calls) no major hypo incidents
(no official records so they NEVER happened) and yet I am changing to a
completely different formula. I know how to do what I do now with the tools
that I have now and I do a pretty good job of it. Why have I chosen to throw
all that out the window and start from zero all over again… I must be crazy.
It seems to me that self-doubt is possibly a constant
companion of us as humans, though one that carries a whole load of extra
baggage as a PWD. We doubt our maths, we doubt our treatment decisions. We
doubt almost every single treatment we give ourselves and then worry that we
maybe didn’t record what we actually did or we recorded but didn’t do it. The
anxiety in worrying if you did in fact give your basal shot and at the correct
level. Did you use the correct ratio? The distraction as you monitor your
sugars to see if you did do what you think you did or not? It really is
exhausting.
I tell myself that is the biggest things that I am giving
myself with pumping. I have that second check, I have the machinery to just do
the “normal” background stuff so I don’t screw it up (AGAIN!) but then my
overactive mind worries about the next thing. What if it fails?
The pen failures I have nailed, I know them all.. I’ve seen
them all and can spot them fast and fix them. This pump stuff is so new I have
no clue. No baseline, no indicators no nothing. How do a fail back? My various
professional lives have always had a strong element of risk management.
Identify the things that can fail, document and train for the really bad things
and PRACTICE.
Well, these evening I feel like I well and truly screwed
myself since I have no clue about the possible failures or emergencies and I
will need to guess. I will need to rely on my own gut instinct… the trouble is
I am naturally distrusting of my own gut instinct since I have a habit of
screwing things up in interesting and spectacular ways. Where my health is
concerned that leads to a degree of anxiety.
Is it simply nerves due to change for the unknown, probably.
The problem is that the human mind, rational as it may be most of the time,
tends to be completely irrational. So please forgive me.. I am having night
before pump start jittters and hopefully tomorrow it will all go out the window
and life will be all sweetness rum (or gin if that is your preference).
In any case, the future is looking at being rather
interesting (I seem to recall an ancient curse along those lines) though I hope
and expect with the help of the brilliant DSN’s at the clinic and the amazing
friends I have in the #GBDoc I will find a way through this and settle in
nicely.
For now I guess I will just try to remember not to be too
hard on myself in the new world and learn all I can as fast as I can.
Thanks for reading my rambling drivel dear reader!
Wednesday, 27 June 2018
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.
Sunday, 25 February 2018
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:
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.
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.
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.
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.
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.
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.
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
- 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.
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 notpretty... 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
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 haveto 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.
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