Autumn Almanac: The November #HappyDiabeticChallenge

The #HappyDiabeticChallenge which many have been following and contributing to on Twitter over the month of November, has proved to be enjoyable and interesting. I am pleased that I managed to post on every one of the 30 days, and I found it interesting to be made to reflect on these themes about diabetes. It seems a shame that they just drift away on a Twitter timeline, so I decided to curate my 30 posts into a blog post. I hope readers will enjoy seeing it all in one place, with selected illustrations and links. 

Of course, all my blog posts need a song title, so I chose a 60s classic from the Kinks to reflect the November theme and the idea of daily posts: Autumn Almanac. Click on the title and enjoy it while you read on...

So here it is - my #HappyDiabeticChallenge for November 2018:

Day 1 - Introduce Yourself: I'm Adrian, #T1D for the past 21 of my 61 years. Retired teacher, married with 3 adult children. Lover of gardens, cats, football, music, conversation and silver linings: diabetes has been a curse but also a source of new friendships & opportunities.

Day 2 - Type of Diabetes: I'm Type 1, initially misdiagnosed Type 2 at the age of 40 back when adult onset Type 1 was thought to be rare.

Day 3 - Pens, Pump or MDI: I'm unequivocally MDI 

Day 4 – Diabuddies: My definition of diabuddy is "Anyone who is, or who supports, a person with diabetes" And they bring a wonderful silver lining to the cloud of diabetes. I count several diabuddies among my very closest friends. You know who you are.

Day 5: Diabetes and Style: Hmmm. Not sure what that means. "Style" is not a word commonly associated with me. But I do think my @FreeStyleDiabet reader has added style, thanks to my #DeutscheDiabuddy @PEP_ME_UP

Day 6 - Biggest supporter: I wouldn't want to single out any of my #diabuddies who are such great supporters, so I'll say it's Mrs L. She's been with me for 19 years without D & 21 years & counting with. Always puts up with my "carry on regardless" attitude

Day 7 - The Bright Side: Two slides from my talk at #TADTalk2017 - "12 good things about diabetes" Tongue in cheek (so please don't get cross), but I hope it strikes a chord with some. It's a serious & exhausting condition, but there are positives.

Day 8 - Fave Diabetes Accessory: Well, it wouldn't be me if I didn't say my @FreeStyleDiabet, especially on a day with NHS access once again in the news. But my #JellyBabies box is also always with me.

Day 9 - Blood Sugar Roll Call: “Here Miss” 6.8 at 08:38am

Day 10 - Tattoos & diabetes: I don't have any tattoos so (with permission) here's a pic of my favourite, on the arm of my diabestie @ellierosehuckle. A #hummingbird, a thing of beauty with an apt & subtle nod to diabetes, evoking the role of balance & sugar

Day 11 - Low Carb Snacks: The words "low carb" seldom cross my lips and certainly never precede the word "snack". Crisps all the way for me.

Day 12 - Lancet Change Monday: I think I was cleaning my hens' teeth last time that happened. #gbdoc

Day 13 - Diabetes & Mental Health: I am VERY aware of my own good fortune. Meeting many fellow #pwd has brought home to me the struggles that so many others living with diabetes experience. I salute their honesty & resilience. It's a tough condition.

Day 14 - #WorldDiabetesDay: A perfect opportunity amidst all the excitement of this day to acknowledge & thank all the health care professionals, charities and advocates who do so much to help & support those living with all types of #diabetes

Day 15 - Diabetic cost of living: well I hope mine may be about to fall by £100 pm with yesterday's #Libre news. A timely reminder that, despite the embarrassing political chaos unfolding before our very eyes, we are luckier than many. #Insulin4all

Day 16 - My motivation? Remaining positive by trying to do the right thing & helping where I can.

Day 17 - Blood: Lick or Wipe. Fortunately a less common issue thanks to @parthaskar @cahmn @DiabetesUK @JDRFUK et al, but I'm 100% lick, then try to guess BG from the sweetness of taste. I used to be pretty good at it. Is that weird #gbdoc?

Day 18 - Society & Diabetes: you don't have to look far on SocMed to see the cruel or plain daft stuff that's said about diabetes. In real life, I tend to encounter just embarrassed ignorance tinged with sympathy. Like from that radio interview with the PM on LBC.

Day 19 - Diabetes Essentials: In reality, insulin is the only true essential (ask @PeteDaviesType1 for perspective on d-care from 50+ yrs ago) But accurate, frequent monitoring is essential in the context of a full & active life

Day 20 - Where are you from? Born & raised in Bolton, Lancs., of Londoner parents; lived short but significant parts of my life in Oxford, France & Liverpool; then past 32 years in rural Fylde, Lancs. All relevant & influential on my thinking & outlook.

Day 21 - Exercise & Diabetes: I'm by no means an active sportsman these days, but I keep active and I find activity, or lack of it, are VERY influential in trying to maintain reasonably steady BG levels.

Day 22 - What are you thankful for? The #NHS; supportive & loving family; good health other than #T1D; an instinctively positive mindset; not having #T1D during childhood & youth; and above all, the lovely friendships & opportunities arising from #gbdoc

Day 23 - Blue Friday. As opposed to some other colour of Friday which parts fools from their money. Bit stuck on this one.

How about a Blue Playlist? Click on the link and enjoy.

Day 24 - Fave Diabetic Book? I haven't read any book about diabetes since reading this after diagnosis in 1997. I've still got the book - it looks rather quaint these days.

Day 25 - Diabetic hero/heroine: Where to start? Banting & every researcher working on meds & tech; Docs & DSNs who care for & support us; diabetes charities; & #diabuddies who do their thing with practical/emotional support, techie expertise or humour.

Day 26 - Advice for Newbies: Difficult: there's rather too much advice out there! Perhaps best to say there's no "right" or "wrong" way to do diabetes. Take time to watch, listen to & observe others. Then choose wisely & never claim you've cracked it.

Day 27 - Fave Testing Finger: Outside of little finger. Why? Least used for other tasks I guess. Not that I do many fingerpricks these days thanks to @FreeStyleDiabet

Day 28 - Diabetes & Technology: I've had no cause nor wish to embrace pump technology, having found MDI perfectly adequate for my needs & lifestyle. I am, however, fully convinced of the huge benefits to all #PWD (inc #T2D) of some form of continuous monitor.

Day 29 - Goals: to live out a long & contented life free from complications. For others: the same, but with the hope for younger #pwd that innovations in medication & technology can minimise or even eliminate the burden of diabetes.

Day 30 - Beyond Diabetes: A great one to finish the month. I always look beyond diabetes in myself & others. In my friendships with #diabuddies, I always aim to keep diabetes in its place: a very deep & significant bond, but beyond diabetes is the person.

Stop Me (If you've heard it all before)

Stop Me (If you've heard it all before) This is a re-edit and repeat of a post I did back in March, but the growing frustration felt by me and others, both patients and healthcare professionals, about the postcode lottery of access to flash glucose monitoring leads me to repeat myself. My habit of finding a song title for all posts led me to a lesser known song from 1976 by a somewhat under-rated artist, in my opinion one of the finest and most expressively soulful voices - Billy Ocean. Just listen to the song by clicking the link if you're already bored, or listen and read on...

Yes, you have heard it all before, but I and many others won't shut up until fairness and common sense prevail.

Diabetes is a condition, not a disease. Type One may one day be “cured”, but not in the foreseeable future in a manner which is likely to be available to people my age and considerably younger. Those of us already living with Type One Diabetes should accept that we are likely to see out our days with our unwanted friend T1D; a cure is a desirable and achievable aim, but for those yet to be diagnosed in my view.

The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on. 

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition which, if well managed, is not degenerative requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability as much as a disease, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability, or who are paying lip service but imposing prohibitive criteria, cite its cost yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a diabetes consultant who spoke at the Rise of the Machines event in February. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access to therapies for people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. And we are required to self-administer and regulate the effects of this potentially lethal drug without medical supervision for 99% of our time. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??