Friday, 14 July 2017

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 ( 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):

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.

Wednesday, 17 May 2017

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 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.

Tuesday, 16 May 2017

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:
Lunch : (40g/10)  x 1 = 4UI (+3 For Test Shot) = 7UI
Dinner: (60g/10) x 2 = 12UI (+3 for Test Shot) = 15UI
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:


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
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!


Saturday, 13 May 2017

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 :)


Wednesday, 26 April 2017

Sometimes we are lucky

Wait, what... T1 means we are lucky... well okay when you put it that way yes it does, but in negative amounts. But then again it depends on your perspective.

The trouble with diabetes is that there is just so much to wrap your head around from all the practical bits to the emotional stages you go through at diagnosis (not even starting on the poor loved ones who sit on the outside powerless) that the whole thing is almost always going to come off as a negative.

I know in the weeks and months after I was diagnosed that was certainly how it seemed, but then looking back now was it really that bad?

Work, life and the wild world

It's a hard thing going back to work as an adult suddenly having T1, I know many times I used to think that maybe being diagnosed as a child might be better but then I do sometimes wonder. The truth is there is no better time to get your D day... it sucks, regardless when in your life it happens.

The important thing is what you do next and how you view it, though I think it is probably the other way round.. how you view it and then what you do.

For me when I was diagnosed my wife and most of my family, friends and any kind of support was on the other side of the country or planet and I found myself in hospital, so I guess you could say I was kind of light on the local support network.
But this is where I find the first time that I count myself as lucky....

Understanding employers and great bosses

I see it fairly regularly on the forums, people struggling with an employer or manager that is just not prepared to make any kind of reasonable adjustments to help you with your T1. Not least even accepting that you have basically just lost a huge part of your life, in your own eyes, and you need time to mourn.

I am lucky... I work for a great company and have an amazing manager. The first question I was asked when I told my boss, via a very short email, that I had T1 and was being admitted was "Don't worry about work, what can we do to help?"

It was probably the second day I was in hospital that I had a visit from my skip manager and the HR manager (Because they knew I didn't have anyone local to help me) that I realised the kind of support to expect... it was nothing work related they came to see me about they just came to visit me since they knew I likely wouldn't have any visitors.... it later turned out that my skip manager knew most of the nurses on the ward so "my card was marked" that I had second thoughts but that is a whole other story.

Much, much later

Well kind of. Within a couple of weeks of getting back to work I was asked if I would mind talking to the first aiders in the building and bringing them all up to speed. I had already had a few hypos at this point (first was before I even got to the ward) so was happy to talk. Again it was nothing but great questions.... most people will be great if the environment has been set up to allow them to just be normal caring people.

Fast forward a few years and I am just getting on with life, having my adventures and also having an absolute blast at work as we are planning on moving to a new building.
The big day(s) come and the team I am part of are basically working 16-18 hour days to get everything moved over in 3 days so business can go back to normal.

It is in all of this craziness, while we are having a break and I am treating yet another hypo (50% basal and still?... I mean really!) that my manager was asking me how I was doing since he saw me test and then shovel jelly babies (if Bassets ever drop the carbs in them there WILL be riots, though likely not long ones as we will all hypo) that the conversation turned to the breaks for me to do just this.

And again I felt incredibly lucky. My manager basically told me that he used me as a guide for when to call a break, when he saw me start to exhibit hypo symptoms he would call it quits for EVERYONE and we would all take a short break. No singling me out just get everyone to chill. It turns out that he had noticed that this was great for morale since we were all working very hard but I made a very good canary (Go me!).

Much, much, MUCH later

I had seen a couple of posts on the DCUK forums about a bunch of people meeting up, just for drinks and a natter down in London. I wondered about this for a while thinking about going until my lovely wife in her typical direct fashion said something along the lines of "I think you should just go, at least it will be some other people that just get you"... I think she just wanted rid of me for a Saturday so she could watch her series.

The end result was I found myself sitting alone in a pub, nervously waiting for an unknown number of other T1's in the wild to join me. After moving tables and dumping my tester, pens and a few other mixed bits on the table I waited. Not long after that @Type1Bri introduced himself and I seem to have been hooked on meeting up with a bunch of other moderately sane T1 people in London ever since.

It's the people silly!

And so I guess I kind of close the loop.
When I was diagnosed I was more or less alone, no one available on the phone due to distance and time differences then, slowly but surely, people came out to support me and show me that I was wrong. Eventually I ended up meeting some of the most compassionate, funny, knowledgeable and amazing people that I know. All of this in just a few years because of T1.

That all very quickly lead on to the #GBDoc on twitter and all of a sudden I don't know how large my support network is when it really comes down to it. Which is how I end up writing this to you poor suckers that are reading it from some reason.... listening to the many great speakers at #TADTalk2017 (and talking with the many wonderful fellow T1's) left me thoughtful and had me finally pluck up the courage to bore you all with my mindless mental meanderings.

I just wonder where it will take me next, either way I know I will have great company.... Like I said before, it's all about perspective and from where I sit I really am very lucky!

For all of you fellow T1's out there, Thank you!