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If I weren’t so lucky by Matt Butler

7 Feb

It is pretty simple……..

If my insulin was not provided for by the National Health Service from the second I was diagnosed, I would be in a lot of bother. I may even be dead. I certainly wouldn’t be married to the woman I am now.

I remember my day of diagnosis well: the nurse called me in to a small room and told me that the blood tests I’d had done did indeed confirm that I have Type 1 diabetes and I would have to inject insulin every day. As crappy as I felt (apparently I wasn’t far from being hospitalised), there was the small matter of being told to stick a needle into myself. See, at the time I could not stand needles. I still cannot watch the television if an injection is being depicted. The abject fear on my face was probably plain to see. I can’t imagine what the look on my face would have been like if the nurse had have added that every injection I did would cost me. Because when I was diagnosed I was in a pretty poorly paid job, as I was only just embarking on my journalism career. So if insulin hadn’t have been provided to me (literally there in that room, mixed 25-75 short and long-term, in a burgundy-coloured pen with a fresh shiny needle of 6 millimetres in length), I would have been faced with a pretty tough choice. Either take out crippling health insurance, pay for my insulin via unsustainable loans, or buy an air ticket home to my parents on the other side of the planet and ask them extremely nicely to fund my new needle habit. Or of course I could have just not taken it. And then died. None of the choices above would have been attractive. In fact looking at the alternatives to having insulin provided to me makes me wonder what I would have done. As well as the new world of regular blood-glucose tests, carbohydrate counting and the need for a supply of jelly babies to be kept close at hand, I’d have had to either uproot my life, take out a second job or be plunged even further into debt. Or I could have keeled over drowning in ketones.

Of course there are people in the world who do not benefit from a comprehensive state healthcare system – but still cannot afford the insulin they need to stay alive. We will ignore the accusations that pharmaceutical companies contribute to an artificially inflated insulin market, but just acknowledge the fact that insulin does cost a lot of money. And it is not as if people with diabetes have any alternative.

Spare a rose. Save a child


Jane’s Story

30 Jan

This year, on January 22nd, I celebrate my 53rd Diaversary. It was also the night I was supposed to see the Rolling Stones in Sydney. I ended up in Hornsby Hospital in a coma, and my brother used my ticket.

I was expected to die, but the medical gods, and insulin, were on my side. I was 15, and about to enter my final year of High School.

This was what I call the ‘Dark Ages’ of diabetes treatment: no glucometers, no disposable syringes, no ‘human’ insulin. We had to mix wee with water in a test tube, add a Clinitest tablet, and wait to see what colour the mixture turned. Supposedly there were 5 grades of colour. In reality there were two that mattered: blue, and brick orange. Blue showed that you had probably been hypo 2 hours before, and orange showed that you were high 2 hours before the test. Not really very helpful, especially as I nearly always reported to the parents that it was blue. I took one injection a day, mixing Isophane with Regular insulin, and eating to the insulin. No wonder I put on weight!

Yes, I have complications. In some ways this is not surprising when you think of the treatments of those days. However, not all PWDs from this era have complications. I believe that complications result as much from genetic make up as from lack of good treatment. I am not ashamed of these complications. Diabetes, and its complications, make me who I am.

Very early on, maybe 6-7 years after diagnosis, I used to vomit undigested food after meals, or have bloody aawful hypos. Yes, you guessed it: gastroparesis. I suffered with this for 39 years before it was diagnosed by a very bright GP in country NSW. Once I was put onto Motilium tablets, I didn’t look back. Yes, it was a damned nuisance, especially when it occurred at a dinner party at my parents’ home, and other guests thought I was drunk. My husband had seen me like this before, and knew it wasn’t to do with how much wine I’d had. Socially embarrassing, yes. My ‘fault’? No.

Retinopathy. Ah, now’s there a word to conjure with.

I showed no signs of retinopathy until about 20 years after I was diagnosed. This was treated with laser therapy. I was seeing an eye specialist whose practice it was to schedule 3 patients for every time slot so that, unless I got there first, I waited … oh, how I waited. The man was an arrogrant pig who delighted in making me feel that this was all my fault. I hadn’t kept ‘control’ (oh, how I hate that word) of my diabetes, or I must have been eating the wrong foods. I’m sure he enjoyed lasering my eyes – it doesn’t hurt, he’d tell me. Like hell it didn’t! After the first time I took paracetomol and codeine tablets before I went in, and repeated the dose when I came out. I knocked myself out for the day, but this way I could cope with it. He did so much treatment over a period of about 5 years that I now have almost no peripheral vision, and had to give up driving 14 years ago. The good thing is that since 1992 I have no signs of retinopathy.

I had cataracts removed last year. The eye specialist I now see thinks that they were due to diabetes, but he is not the shaming kind of health practitioner. At least now I only have to wear specs for close up work.

Grumps and I share the joy of having had Charcot foot. I think I was luckier than he. I had a slightly sore spot on the top of my foot that didn’t go away. My GP sent me for X-rays, which showed a fracture of one of the small cuneiform bones. I have no idea how that occurred. I’ve always had weak ankles, and can turn my ankle on flat ground. I could have stepped on something that I didn’t feel (thank you, neuropathy), or walked on uneven ground. Who lnows? I certaily don’t. We went to A&E at the local hospital, and was put in a temporary plaster cast an instructed to make an appointment at the fracture clinic at Gosford Hospital. Boy, was I lucky. I got in quickly, and was seen by two of the best orthopaedic surgeons at the hospital. The consensus? Charcot. Plaster for 3 months. This was in an Australian summer; not the best time to be in plaster. Because of the quick, good treatment my foot is not misshapen by Charcot, only by good old osteoarthritis in a couple of toes.

And my latest (and I hope last) complication: Chronic Kidney Disease due to Type 1 diabetes. Aren’t I lucky? This was diagnosed about 10 years ago. It has not progressed, and thanks to my renal physicians, is unlikely to lead to dialysis.

People, I can live with all this. Shit happens. I deal with it with help from a very good health system in Australia. I just thank goodness I am not in the USA or an African, third world county. I am not ashamed of what has happened. I wish it hadn’t, but there’s nothing I could have done, or can do, about it. Yes, I get depressed at times, but that seems to be normal amongst T1s, whether with complications or not.

Here’s to a good life, and to a cure, but I won’t hold my breath for the latter.

Jane Reid

Peer Support at IDF 2017

11 Dec

If anyone is interested or just needs a cure for their insomnia, here are the slides from the talk I did at #IDF2017 World Diabetes Congress on my experience of Peer Support.

It was also live streamed on Facebook so if you want to see it then feel free.

Type1 Peer Support Slides IDF 2017


Live Long and Bolus


Another Bloody Diaversary Blog

25 Aug

23 years ago today (unless you are watching on +1 or catch-up) my Type1 Diabetes was diagnosed with me.

Seen stuff recently asking “what would you have done differently?” or “What would you tell yourself if you could have?”

So here goes:

I was 90% sure what was wrong but I kept delaying going to the doctors.

So what would I gone earlier knowing what I know now?



I was a stubborn bastard then

I’m a stubborn bastard now


It didn’t worry me in the slightest

Would I react differently?



There was no drama.

No emergency.

My T1D was lucky enough to spend 25 years without having me inflicted on it, and I’d got as far down the path to so called adulthood as I was ever going to go.

I was the kind of person that is offensively calm about everything

I still am now


I didn’t involve any family, friends or work colleagues in any way

Would I if I went back in time?



I didn’t like people then

I don’t people now


I could go on but it’s all going to be the same

Would I do anything differently?



Because I’m the same person now that I was before diagnosis.

It has not changed me.

It never will.

I won’t let it

I don’t live with Diabetes, it lives with me!

I would however have made sure I was wearing shoes when I left hospital. The sudden realisation that you are crossing the road still wearing your slippers makes to feel like a total knob…….

Live Long and Bolus


Love Changes Everything

9 Feb


They say that Love Changes Everything.

Someone even wrote a song about it…..

Is it true though?

Personally I couldn’t give a toss if it is or isn’t!


It’s almost that overly commercial time of year where women receive skimpy garments that they would never purchase for themselves, bought by naive men that think it’s going to increase their chance of getting a blow job. All in the name of “Valentine’s Day”

 Call me unromantic, but guys, if you give that much of a shit about someone then just tell them. Every day. Show them. No. Not by sending them a picture of yourself trying to make your stomach look smaller and your know what look bigger, but just by being kind. Every Day!

Who knows, it might even increase your chances of getting laid more often……

So if you now wonder if your token Anne Summers purchase is a bit tokenistic, and that for some insane reason she will think that you bought it more for your benefit than hers, you can fix it…..

Buy the love of your life 11 roses.

On the card, explain why you didn’t buy her 12.

Tell her that you donated the money for the 12th to Life for a Child.

She will see that you have a heart, not just an erection………

 To donate, please visit:

 Live Long and Bolus



Diabetes on Strike

14 Jan


So the other week the station staff on the London Underground (The Tube) went on strike for 24hrs meaning most of the stations were closed.
I usually have a 4 mile Tube ride through London, which i am not a massive fan of.


Because its public transport!

Why don’t I like public transport?

Because I don’t like the general public!

Especially before I’ve had coffee!……
Id already decided to get into London early and walk the 4 miles.

For the record. I do not like early either!
I kind of manage my Diabetes “on the fly” and tend not to plan things in too much detail.

Sound irresponsible?

I guess it could do, but in my head I’ve got 22 years of doing this shit stuff to fall back on so will be ok.

Also I’ve planned what I’d do to manage my BG’s in detail, but, my BG’s don’t follow plans….
I’m lucky enough to have an insulin pump and CGM so dropping Basal rates and quick checks of BG are mad easy and allows me to manage my levels on the move.
So in short,  I did a fuck load lot of walking and kept my BG’s in range.

No Hypos on the way there.

Dropping fast at the end of homeward walk, but what better excuse for a McFlurry right?
And this are my FitBit stats for the day…..

You wondering why I’m telling you this?

(Assuming you have actually read this far….)


I did a fair bit of exercise.

Burnt a lot of calories.

Kept BG’s in range.

Used less insulin than usual.

And I totally fucked up fucked up my feet!….

Blisters, cuts and sore as hell (which given they are numb due to neuropathy isn’t great)

Its ok. They will be fine. I’ve been dressing them and looking after them and they are on the mend.

I’ve learnt a few things though.

Diabetes management is not just about my BG’s, its about the whole me.

Sometimes I need to plan, even if its just wearing the right shoes.

I don’t hate public transport as much as I did.

However I’d prefer the public not to be on it…..

Live Long and Bolus


Diabetes Drone

30 Dec



It looks like I was on the bad list. Again

Santa didn’t bring me a Drone for Christmas.

They can’t be that hard to fly. Right?…….


HCP -“Ok Mr Grumps. You’ve got what we call Droneabetes!”

Grumps – “What the hell is that?”

HCP – “Well. Your internal Drone has this fully automatic navigation system that flies it for you. It stays between these two levels. It won’t let you go too low so you don’t crash and it won’t let you go dangerously high either. And it gets better! It will still fly perfectly in high winds, avoid obstacles and even keep on course when you are asleep. Cool huh?”

Grumps – “Really cool. Why are you telling me this?….”

HCP – “You’ve got what we call Droneabetes!”

Grumps – “Yeh. You said. So is my Drone broken”

HCP – “Goodness no. But the navigation system is……… Now what’s the correct medical term?…..Oh yes. It’s fucked.”

Grumps – “Oh. Shit! So my Drone has crashed?”

HCP – “No. It’s flying a bit high. Ok. It’s stratospheric right now, but its ok, we can keep you here until we get it back into the range that you were before you blew a fuse. Errm, were diagnosed.”

Grumps – “Phew. That’s a relief. And then it will be working like it did before. Right?”

HCP – “Well. No. Sorry”

Grumps – “So how do we fix the navigation system?”

HCP – “Hang on… I know the answer to that one….. Yep. We don’t. Again. Sorry.”

Grumps – “Why not?”

HCP – “We don’t know how to yet”

Grumps – “When will you be able to?”

HCP – “Stop setting yourself up for cheap laughs on your blog Grumps….”

HCP – “We are not sure what causes it yet. Well not fully. You’ve blow a chip. But we are not 100% sure how. Or why. So if we replace the chip it could blow again. Anyway. Chips contain Carbs. I’ll make an appointment with your Dietician to explain that…”

Grumps – “Errm. Ok? So how will the Drone fly, stay in range and avoided all the variables that are thrown at it once I go home?

HCP – “You will have to do it manually”

Grumps – “That doesn’t sound like much fun!”

HCP – “Why not?”

Grumps – “I’m married. For years. And years. Manual is less fun. Trust me…..”

HCP – “Fair point. But it’s the only option.”

Grumps – “Oh. Bollocks. Guess I’ll have to then. Will you teach me how?”

HCP – “WHAT? The “Marriage bit???”

Grumps – “No! the other bit!”


HCP – “Yep. We will teach you the basics. Enough to get you started. Then you can go home”

Grumps – “Ok. Sounds easy enough……………………”


Live Long and Bolus.


New Year’s Revolutions……….

29 Dec

New Year’s Revolutions……….

No. I’ve not got the spelling of “Resolutions” wrong (although my spelling is total crap).

This is not a review of my 2016 you will be pleased to know. I can sum my year up in two simple pictures…….



Almost another New Year….

Well. Actually yet another year but with just a different number isn’t it?

Is it starting anew, or just starting the cycle again?

I gave up New Year Resolutions years ago as I never stuck to them, just ended up pretty much where I was at the start of every year. More like Revolutions not Resolutions….

Don’t get me wrong. Being pretty much in the same place is ok with me. I quite like where I am and how things are going. Of course there are things I’d like to change….

  • Get Fit
  • Lose Weight
  • Get Rich
  • Frown More
  • Be the next James Bond
  • Save the world (let’s face it, we have really fucked it up)

You know. Realistic and achievable stuff……

Which is why my resolutions never got carried through maybe? Unachievable. Or in the short term at least.

The other reason is that I don’t pay attention to what works for me.

Take my Diabetes (actually, don’t take it. You wouldn’t want a bit of Grumps in you…..). End goal is to ride the London Surrey 100 (finally after 2 years of deferring my place).

If I want to drop my A1c, or just get more time in range, I set achievable targets (7 day average, then 14 day, 30 day etc.) so I can see progress. This keeps me motivated and the end result is the goal I was aiming for.

So that’s my approach for 2017!


  • No alcohol in January. Have signed up for Dryathalon and its an achievable quick win.
  • Walk 15,000 steps per day (actually use the fitbit for more than telling the time).
  • Take my bike off the garage wall (I’m not promising ill ride it but at least it will be like weight lifting 1 rep….)
  • Find an exercise I enjoy (NO! not that one! 10 seconds “max sprint” isn’t going to get me fit….)
  • Do what I said I would do and stop making excuses for why I didn’t!…….

We will see how it works out I guess

Grumpy New Year.

Live Long and Bolus.



Driving My Diabetes…….

2 Jun

My name’s Jeff Grumps, and it’s been 12 months since my last blog post.

Ok. That’s confession out of the way!

Well, the quick version. You’d be here for months if I owned up to everything…….


My son turned 17 last month, and in the UK that means he can learn to drive a car. The foolish child young man is has blind faith in his father (according his birth certificate, that’s me) and asked me to take him out for his first few lessons……..

I’ve no issue with this as (you already know this) I’m offensively unstressable.

However, it’s been a bit of an education. After decades of driving, I just get in a car and drive. It’s all fairly automatic, I go through the motions. Use the functions and features of the available to me (steering, gears, sat-nav, parking sensors, indicators). Take in all the information that’s around me (traffic flow, cyclists, road signs the dick head other driver that cut me up on the roundabout). I put all this together and calculate the best thing to do in that given situation. The end result is that by a combination of luck, judgement and calculated(ish) risks taking, I arrive safely at the other end. Some journeys are easier than others, some longer, but in the long term the outcome is the same. I’m safe and where I need to be.

In order to show the boy how to drive, I have had to be more focussed on my own driving, eliminate any bad habits. The result being that I’m more careful and possible safer (or at least less unsafe).

Kind of sounds like my life with Type1……..

It’s all fairly automatic for me. I have the tools and information I need to put it together and calculate the best thing to do in that given situation. The end result is that by a combination of luck, judgement and calculated(ish) risks taking, I arrive safely at the other end.

Its time I have a period where I am bit more to be more focussed on my own diabetes, eliminate any “bad” habits. The result should be that I’m more careful and possible safer (or at least less unsafe).

For me, in life, with my diabetes:

Some journeys are easier than others, some longer, but in the long term the outcome is the same. I’m safe and where I need to be.

Live Long and Bolus


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