Reflections on 50 yrs with T1 Diabetes 1965 – 2015

30 Oct

Guest blog post by Lis Warren

Lis 1 Lis 2

After living with Type 1 for 5 decades, this year I’m celebrating becoming a Diabetes UK and Joslin Medallist.  Throughout the year I’ve been reminiscing and reflecting on how things have been and at times, wondering why and how I’ve been so lucky to arrive here!  I’d like to share some thoughts that have helped me stay optimistic and well in the hope that others may discover things to help them on their way.  I’ve made plenty of mistakes, so feel incredibly privileged to be a Diabetes Medallist, but thankfully learning from errors has usually spurred me on, so…

    • Attitude is key.  It’s hard to dance with the devil on your back, so shake him off, embrace your diabetes, care for it and make it your friend!  It upsets me to see how fearful many people are for their future with Type 1.  If you hang on to them, fear and anger can be crippling emotions.  I hope and pray that those newly diagnosed, their doctors, friends and family can work through, manage and come to terms with negative feelings so that they can feel free, accepting of and most importantly, at peace with diabetes.
  • The UK’s NHS is FANTASTIC!  I’d be long gone without the hard work and dedication of its many brilliant staff.  I’m also grateful for the things I’ve learned over the years from Diabetes UK’s Balance magazine (my only source of info, other than hospital visits, in my first 40 Type 1 years!), from JDRF and more recently, getting in touch with INPUT to learn about diabetes technology. My heartfelt thanks go to you all for your help over the years.  
  • After a short period of wondering when a cure would arrive (always ‘next year’) I realised that it wasn’t worth dwelling on this.  However, taking part in diabetes research is one of the most interesting and enjoyable things I’ve done.  It’s incredibly inspiring to meet enthusiastic researchers, to learn things about diabetes you’d never otherwise discover and to meet and have fun chatting with other volunteers.  I wish someone had told me how rewarding this could be decades ago – even straightforward diabetes market research can be great fun!
  • In some ways not much has altered in 50 yrs.  Attitudes have improved, the doctor/patient relationship has changed and new equipment and technology have made some things easier, but I still do exactly what I did in the 1960s i.e. try to match insulin delivered with carbs eaten without losing consciousness en route!  (Though in the 60s-80s, I don’t recall discussions about dose adjustment without ‘permission’, you did it because it worked and kept schtum.)
  • The only real Game Changers for me have been the invention of home blood testing in the 80s, then continuous glucose monitoring (CGM) sensors.  CGM has taught me far more about the body’s reaction to exercise, illness, insulin, food, and stress than any other diabetes education or tool. Using CGM is like switching a search light on in a pitch-black world – it was something I’d fantasised about for years. It provides life transforming info about where to place your next step.  And despite the huge burden it places on me both financially and in lost sleep (those bloody alarms) it possibly keeps me ticking as I’ve experienced some life-threatening hypos over the decades.  My gratitude to researchers for these tools is absolute.
  • I don’t think diabetes should be blamed for everything that goes wrong in one’s life.  It’s tempting to assume that every physical or emotional challenge is caused by it, and many non-specialist healthcare professionals also make this mistake.  If you’re not vigilant, making diabetes your scapegoat may happen unconsciously.  The stigma and bad press it sometimes gets may persist or worsen if it’s blamed for all one’s physical or emotional ills.
  • I’m really grateful that as a teen, people around me never led me to believe that Type 1 could hold me back.  I adopted the stoic ‘grin and bear it’ attitude prevalent in my northern upbringing!  I’ve certainly had periods of depression over the years, but I honestly don’t think I’ve ever felt sorry for myself.  I believe that when youngsters with Type 1 reach a suitable level of maturity, they’ll thrive if well taught, supported and encouraged to take control.  I think it’s unwise to molly coddle or support a self-pitying attitude.
  • Diabetes gives more than it takes away.  I’m grateful for the character traits it forced me to develop: resilience, acceptance of things you can’t change, determination, an ability to put health-related things into perspective, being sufficiently well organised to remember to inject then eat regularly, empathy for others with far worse conditions, and finally a modicum of self control around food (though this one took decades to develop!).
  • I’m grateful that the high prevalence of eating difficulties in Type 1s (estimated at 40%) has finally been recognised and specialist support is now becoming more accessible.  Thankfully I learned to count carbs from day one as a teen.  But sadly, my personality type led to slavish weighing and measuring of carbs and a focus on body image, planting the seed for a difficult relationship with food that took years to resolve.  For people with Type 1, poor eating habits can both kill (as in DKA) and save your life (as in treating hypos).  In susceptible folk like me, food can become a problem.  I used it to manage emotions and succumbed to yo-yo dieting, which made things very hard and contributed to periods of very poor diabetes management.  A great deal of hard work put this to rest.
  • Social media and the Diabetes Online Community (#DOC) has transformed the lives of people with diabetes by giving easy access to more and better information, as well as fantastic peer support.  Joining the #DOC was cathartic for me, as I’d never had close contact with other people with diabetes during my first 40 yrs of having Type 1.  This experience now motivates me to put all my energy into meeting others both on and offline.  I now realise how isolated one feels when you can’t chat with others, exchange views, follow new developments and laugh about the daft stuff we all do.
  • Most people with diabetes seem to have a really great sense of humour.  I love the laughter that’s present at every diabetes get-together I’ve ever attended.  It’s a great club to belong to and you guys are just fantastic people – thank you all.
  • It’s my view that science has a long way to go to match the miracles performed by a healthy body with carbohydrates and insulin.  Blood sugar management, even with CGM, remains a very Dark Art.  Intuition, experience, judgement and some guesswork are always required!  I often make mistakes, but I do trust my intuition and remain pretty wary of insulin bolus calculators.
  • And last but possibly most important, I’m hugely grateful for the love, help, support and Glucagon administrating ‘skills’ (and consequent bruises!) given by my saintly husband, John.  I could not have won these two medals without him by my side – particularly at night when the hypos took over.  And I suspect like me, he’s also extremely grateful for CGM, as he’ll hopefully never have to inject Glucagon again (he’s terrified of needles!).

Lis Warren 27 Oct 2015

Time Bomb?……

4 Aug


I talk to myself. A lot. The outcome of which is usually the same. I ignore myself and just carry on with life in the haphazard way that I have embraced since I started pretending to be an adult.

 So as I stumble (almost drunkenly) to my 21st Diaversary on August 26th of this year I asked myself a question…..

 Q – So, after almost 21 years of T1D, how are you doing?

A – Alright

Q – No. Seriously! How are you doing??

A – Be serious! You know I never take anything seriously!!

Q – Isn’t it about time you did?!!

A – Oh ok. If we are going to play at being adult then I’m doing ok. Ticking along ok.

Q – Good. But. Is ticking along ok good enough for the next 21 years?

A – What you mean????

Q – Are you ticking along ok, or a ticking time bomb?

A – Ah Shit. Good question…………


I had to let that one sink in for a bit. The constant childish belief that I am immortal and that nothing, including and especially T1D, will take me down is always one of the strongest thoughts at the front of my mind. Closely followed by “fuck it lets have a drink”. So I had to get past those first. Yes, after Id had a drink……

Of course the actually answer is YES, I could do with making a few changes, but haven’t I been here before? Oh yes. I have. In the run up to every Diaversary for the last 21 years!

Then what do I change and why will it be different? What will motivate me to stick at it rather than go back to old habits after a day or two?

This is how it’s been in the past:-

Think about your heath – I don’t need to. I’m Immortal!

Reduce the amount you snack – Sod off, I like food.

Cut down how much you drink – Don’t make me come over there and hurt you!

Exercise more (ok at all) – I would, but I’m too tired all the time (oh, and lazy)

Loose a bit of weight – Yeh, but I’d have to do all the above, and clearly that’s not happening……


So after almost 21 years (did I mention it’s almost 21 years?) I was forced to take a long look at myself, over a glass or two of single malt of course, as to what motivates me to actually do anything to improve my heath (given that I’m immortal). I have to have short term goals and see progress as I go. So getting in shape is out as it takes too long. Anyway, I’m already in shape. Round!

So what one thing would I like to change that isn’t in the above list of things I’ve tried before? Well. I do have high insulin resistance (1u of insulin drops me by only 0.7mmol). It’s been progressive over time and if it continues I’ll have more insulin in my system than blood. So maybe I can try to reduce that? How? A bit less snacking in the evening and eating less ready meals and processed food. I can see my Total Daily Dose on my pump every day and see progress day on day. Worth a go?

Well, I started a week and a half ago. In the evening if I’m close to my target of less than 80u per day I don’t snack. It’s working ok as I don’t want to “mess up” that days total. If I have a few units “to spare” then I have a small snack. Either way I’m snacking less. In the first week I reduced my insulin intake by 110u on the week before. As a result of snacking less and eating better food I’ve lost a couple of pounds in weight too.

If I can stick at this I hope that it will go full circle. Reducing TDD, reduces snacking, reduces weight thus reducing insulin resistance…….


All I know is that after almost 21 years (I know! Surprise!!) Type 1 Diabetes has never beaten me, and it never will. After all. I’m immortal…….


Live Long and Bolus


The Gremlin Inside Me

15 May

Diabetes Blog Week Wild Card – Diabetes Personified

“If you could personify your diabetes or that of your loved one, what would it be like?  What would it look like, what would it say, what kind of personality would it have?  Use your imagination and feel free to use images, drawings, words, music, etc. to describe it.”

Basically. It looks like this……..


Live Long and Bolus


Junk In My Trunk

13 May

Uh oh, uh oh, uh oh, oh, no, no


Day 3 – Clean it out.

Ok. So I guess the first thing that needs cleaning up is my filthy mind. No way is that happening! Without innuendo, I am nothing…….

I don’t think that I have any emotional junk when it comes to my Diabetes, so nothing to clear out there. As I said yesterday  I have no secrets, nothing I worry about when it comes to my Diabetes.

That only leaves something physical. I could do with clearing out my “meter cupboard” as I have a few that I will never use. In the UK we are lucky enough to get BG meters for free if you are Type1 or Type2 on insulin. So as soon as I see a new meter I just HAVE to try it #MeterGeek

Thing is I hardly ever end up moving to use the new one. Let’s face it, you are never going to be able to check out a new meter enough with just 10 test strips!

Why the hell do they send just 10 test strips and 10 lancets for the new “pain free, comfortable, soft, and delicate” thing that sticks a bloody hole in your finger! After all, that’s less than 2 days BG checks and at least 10 years of lancets for me. Kind of the wrong way round to what I need o evaluate a bit of kit!

So not a huge amount of physical stuff to clear out either……

Instead I will go through and check all of my back-up kit. I keep spare stuff in the car, at home, in my work bag and in a locker at work. Thinking about it, some of it has been there for a long time and never used as it’s there “Just in Case”. I bet some of it is out of date, meter batteries flat or worse corroded in the meter. I would be pretty crap to have my back up kit fail when I needed it. Now that would make me Grumpy!!

Live Long and Bolus


Open Book

12 May


The Ugly


Day 2 – Keep it to Yourself.

Tough one today and short.



There isn’t anything I keep secret about my Diabetes. It’s not really who I am. This may of course change, but to date I’m an open book.

I’ll tell you everything you want to know about:

  • My Diagnosis
  • My attitude to living with Diabetes
  • My A1c
  • My Complications
  • Dinking of course
  • Even sex and Diabetes (that won’t take me long at all…….)

If I did have secrets there is one person(s) I would tell them to. My Health Care Professional! If I’m not open and honest with them, then how can I expect to build the relationships that I need to ensure that I get the care I need? The may not like what they hear, or the things that I do, but its not their job to judge me.

“I never fear death or dying

I only fear never trying

I am whatever I am,

Only God can judge me, now”

Live Long and Bolus


“There’s No such word as Can’t!”

11 May


This is going to be a short post due to being exhausted after an amazing weekend away with 50 people with Type1 Diabetes learning about sport and exercise.


Not sure that staying up until 4am at the bar helped.

So there you have the first one!

I can drink all night, have 3 hours sleep and still wake up with a BG of this (and you can’t beat a good 6.9 before breakfast can you?…..)



Whenever I hear my kids say “I can’t do that”, my Dad’s voice in my head says “There’s No such word as Can’t!

Of course there is. It’s in the dictionary!, But as I now know (and did then but would never give him the satisfaction of admitting it) he was just telling me that I can. I can do anything I want. Maybe not easily. Maybe not first time, but I can do it.

This has stuck with me through my life. I don’t believe I can fail. I may not get the level of success I planned, but I will never fail. I may not do it first time, but I will never give up. I may not achieve things immediately, but I will keep going, chip away bit by bit until I get there.

Those words in my head were loudest on 26th August 1994, when at the age of 25 I was diagnosed with Type1. I never doubted that I couldn’t do this. Never doubted that I’d not tackle it head on. I definitely didn’t realise what it involved and how hard it would be, but I knew I would never give up!


I can:

  • Manage my Blood Glucose every day (sometimes it goes to plan, often it doesn’t, but I can do it).
  • Live the life I want to lead, the way I want to.
  • Achieve my goals however small they are.
  • Take the lead with my health care team, because it’s MY Diabetes.
  • Getting back up when it knocks me down.
  • Eat pies, drink beer and still have an A1c of 6.8%
  • Laugh at my Diabetes
  • Put my Diabetes in its place (after all, I can survive without it but it can’t survive without me!)
  • Change the world! (well, mine at least)

Ok, off to kick my Diabetes arse for the day.

Nice one Dad!


Judgement Day

9 Apr


I have not been paid in any way or received any products for writing this blog. The views expressed in this post are mine and do not represent any others. Also, the QiC programme has been made possible with sponsorship from Sanofi. Sanofi has had no editorial control over any of its contents

I have never blogged at the request of any third party or company in the past. In fact if I’ve been asked to, I have refused, even if I was intending to off my own back before the request. I’m stubborn that way…..

But, I was asked if I’d write this blog, and I have agreed to.


Because The Quality in Care Diabetes team are looking to invite some people with diabetes to be part of the judging panel for this year’s QiC Diabetes programme.

I was lucky enough to be a judge last year and I would like to tell you what is involved.


Here we go….

First thing I need to clear up is the title that they gave me on the web site.

“Patient Representative and Blogger”

The only person I could, or would ever want to represent me, is me. I was there to give my opinion based on my experience of my diabetes. The fact that I blog is irrelevant. You don’t need to have a blog to be a judge.

So learning point number one is that we need to find a more accurate title. For me it would probably be “Grumpy looking bloke with Type 1 Diabetes”

Personally I do think that it is a good thing to have people with diabetes on the judging panel, and indeed parents of children with diabetes too. I would of course love to see a large number being able to attend from cross sections of diabetes type, age, gender, etc, and I think that expanding the number by a few this year is a good progression and step in the right direction. This is why I am supportive of this and agreed to write this blog.

The Judging….

In March, applications were opened and HCP (or teams) are encouraged to enter their projects or initiatives in the appropriate category via the QiC web site – – until the entry deadline day of 28th May.

Once applications have closed, the entries are collated by the guys at QiC and sent out to the judges for scoring, via big file links on email.

Judges are split into 3 groups, so no one judges all entries, just a third of them.

Scoring is carried out by each individual judge against a list of criteria and a defined scoring system that the QiC team will provide you with.

You get a few weeks to go through and score the entries assigned to you. Boy did I need those weeks!



Volume to start with. I wondered why we didn’t judge all entries, but as soon as I started printing them all out I realised why….

They can be very detailed and take a while to read through. That’s not a bad thing as they need to be detailed to describe the initiative or project fully with objectives, outcomes etc.

The biggest challenge for me though was the medical language used. Of course having lived with Type1 Diabetes for a few years it was not all new to me, but my formal medical education in the form of watching both Casualty, Holby City and (for those of you old enough to remember) The Flying Doctors was clearly not enough…..

So I did have to spend a fair amount of time on the internet making sure I understood what the terms mean.

So, I now know that “et al” does not mean that all submissions were written by a small alien with a glowing finger and his mate The Pub Landlord…….

After scoring is completed, the scores are sent into the QiC guys to be collated (they do a lot of collating) and individual first round scores are circulated amongst the three judging groups. This gives you the opportunity to see how your scores match up against your fellow judges, before the formal judging day.

Final Judging in the form of moderation is done in a full day and face to face with the other judges on your panel.

This was really interesting from my point of view. The first thing that stood out was that in many cases, my scores were directly opposite to those of the HCPs that had judged the same entries.

As discussions progressed throughout the day the reason was clear (not that it was a massive surprise). Simply that the HCPs in general were looking at the clinical benefit to the patient and running of the hospital, but I was looking at it from the “how would I feel if this was happening to me” perspective.

My view is that the whole day was a two way learning experience between my fellow judges and myself and that if just one of them went away from the session thinking even more about how the patient would feel, then it had been a worthwhile day.

By the end of the day, winners and commendations had been agreed and I had to keep my mouth shut (managed it for a change) about who had won. The results are announced at the awards ceremony in October, which as a judge I was lucky enough to be able to attend.

Basically it is a lot of work, you have to hit the deadline for returning your scores and commit to a full day’s judging so it takes a fair bit of time, but I found it an interesting and rewarding experience and I am pleased that QiC are looking to involve new people this year.

Like I said these are just my views about my experience, but if you think that you may be interested in being a judge this year then please apply via the Quality in Care website –

Live Long and Bolus.



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