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 foolOk 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.
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 consistencyIt'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 hospitalFirst 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
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 visitAt 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)
Later stillI 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.
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 stuffThat 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!
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.