D-Evangelism

OK. Cards on the table time. And I'm not a successful poker player so that phrase is normally followed by me taking up a different game. 
  1. I have type 1 diabetes and I've had it for a few decades.
  2. I use a Medtronic Veo (Paradigm 554) insulin pump and have done for just over 4 years. Before that I was injecting multiple times a day.
  3. I also use a Abbott Freestyle Libre glucose monitor for most of the time and like it a lot.
  4. I tend to eat what I want so do not follow a specific style/regime of eating.
All of the above are what I've chosen myself; apart from number 1 and part of number 2, and what's important is that it works for me. Which brings me to the subject of today's missive.

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

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

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

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

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

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

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

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

I'll quickly whizz through my list of 5 at the top to show my thoughts on each.
  1. Yes I've had diabetes a while but for me as I got the pleasure so young it's the normal; so I think I've had it easier than those diagnosed in their teens and upwards as they may remember 'normal' more than me. My years gives me experience and memories of weaker technology but I still learn daily from those of younger pedigree.
  2. I love my pump and might not have chosen another when I started but as I had no choice it was irrelevant. I also like the newer 640G having tried it but that doesn't mean I think other pumps are bad and that the big M is the only choice for you if you're looking for a pump manufacturer. The features and design, including a tube so I can't lose it, work well for me. Other features on other pumps may work well for you or the person who is asking you for advice. For me using an insulin pump works but I know for others it's just not for them and MDI is their preference. No problemo.
  3. I like my Libre a heck of a lot too. I find the ability to scan and check, especially on the move, well worth the cost to me. But it's not especially cheap (I'm avoiding a long discussion on relative CGM costs here) and for some it doesn't work. That's fine too. If you're tempted I'd recommend trying it - if it's available in your country - but if you don't want to or don't like it, that's not a problem for me.
  4. Eating fewer carbs does make my diabetes life a little easier but I find grabbing food on the go much easier when not too carb focussed and I quite like biscuits. That's how I roll. Ooo, rolls. Bacon rolls. Mmm. Where was I? Ah yes, if you try another way and it works for you, it's all rosy for me.
So in summary; if you think you could be a D-Evangelist maybe have a ponder on what you think the best way for you to get your message across might be? And if you ever spot me showing traits of it you have permission to shout "D-EVANGILIST" in my close proximity.

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

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

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

Comments

  1. For the record. I coined YDMV. (It is the tile of my blog YDMV.net) And you my friend, have its usage SPOT ON.

    Also Bacon Rolls sound great.

    Bennet

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    Replies
    1. Thank you Bennet. I tip my hat to you!

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    2. I've always liked YDMV as a concept too - but I would never tell Bennet that!

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  2. It is difficult enough living with or caring for someone with this condition without having to deal with know-it-alls. We all dislike those online gurus who are adamant that switching to different food groups will cure us, yet some of our diabetes community adopt similar evangelical standards themselves.

    One up-manship or preaching do not help; being respectful and courteous does.

    Another friend with diabetes (fwd) taught me not to go on about tech too much when a small group of us had been doing just that. I realised how those in the group who were using different gadgets had been coming across and, tbh, I was disappointed in myself. I am grateful I can afford to do d-tech, but ultimately the biggest thing I would like to see is greater accuracy in meters...the gadget all t1s must use.

    Having good experiences is worth sharing, but not, as you say, if that morphs the individual into a dictator who has forgotten that we are all different. We talk about not accepting standard talk from our endos towards us because we are all unique in our diabetes, yet all too often fellow diabetics end up doing that themselves.

    It was an excellent and well, dare I say carefully, written blog.

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  3. I couldn't agree more Dave - there are simply too many variations in diabetes and people's attitudes to it and ways of dealing with it. To say that one way of living with it is better than another is completely irrational, in my view.

    I think swapping ideas, tips and war stories is the diabetes community's greatest strength - guffy one-upmanship its greatest weakness.

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