“A Little bit More” - it's all about the Bolus

It’s been a while since I posted anything about diabetes; there’s been a veritable pandemic of words and opinions throughout the Coronavirus emergency, and I have many times in recent months turned off the TV, closed or muted a person or a conversation on Twitter or just cut short a real life conversation because I am so exasperated by a surfeit of half-baked opinion.  I am, therefore, cautious to write and post anything, let alone anything medical, but if you’ll bear with me on this one, it will get to diabetes and has no direct relevance to COVID-19. 

The train of thought leading to this post started with one of the many really bad flare-ups of hay fever which I have experienced this year. Apparently, like nearly everything, the exceptionally bad hay fever experienced by many of us in 2020 can be traced back to COVID-19, in that the (very welcome) lowering of pollution, caused by the lack of road traffic, caused by the lockdown, caused by the COVID-19 pandemic, has allowed the pollen to run riot in the less polluted atmosphere. Such is the chaos theory in practice that we have all experienced this year.

Sodium Cromoglicate eye drops

I tweeted something about bad hay fever a couple of weeks ago, and was grateful to receive much sympathy and helpful advice from friends and strangers alike. Among the suggestions was that I should try antihistamine eye drops containing Sodium Cromoglicate, a mast cell stabiliser; I had previously used standard eye drops, which provide only symptomatic relief for itchy eyes. I bought some drops of the suggested type, started using them and found that not only did they relieve the itchy eyes which are such a distressing part of hay fever, but that they also suppressed other hay fever symptoms, in particular sneezing.

This made me take to Dr Google: do eye drops enter the bloodstream and therefore act on symptoms other than the eyes themselves? I was aware, from all the COVID-19 “don’t touch your face” talk, that the eyes are a potential entry route for infections, so perhaps I shouldn’t have been surprised to find, quite readily, that the eyes are indeed a route into the bloodstream:

“When you put drops in your eye, the drops can become “pumped” into the tear system if you blink. Once in contact with the vascular nasal mucosa, relatively rapid absorption of drugs into the bloodstream can occur. The drops can act as a systemic “bolus” - an infusion of the drug into the bloodstream.”[1]

There you are - I said I’d get to diabetes! The word “bolus” jumped out of that sentence from a medical website, and - perhaps like many not medically qualified people - I was surprised to see it, apparently in a new context. “Bolus” is a word all too familiar to those of us whose lives are sustained by insulin, so familiar that I had never really thought much about any wider use of the word. However, look up the word and you’ll find a definition such as this:

“a single, relatively large, quantity of a substance, usually one intended for therapeutic use, such as a bolus dose of a drug injected intravenously.”

So it’s not just we people with diabetes who bolus! I hope that other non-HCP readers will react in the same way, otherwise this blog post is an embarrassing confession of ignorance.

Being a linguist by trade, my reaction to having a word brought to my attention is to think about and research its etymology. So again, I turned to the internet to discover that the word bolus is, as expected, of Greek via Latin origin and originally meant a clod or lump of earth. Some sources suggest a connection to the English word ball, but that is far from clear.

So there you have it: that familiar word bolus is so called because we are injecting or pumping a “lump” of insulin into our bodies. It gets even better if you know the etymology of the word “dose”, because that word actually comes from the Greek word for “gift”. I love the idea - especially as it was gifted, not monetised, by Banting et al - that we inject a gifted clod of insulin!

So what about bolusing? Well for me, it is one of the arts of diabetes management at which I have become increasingly skilled, but at which I am still a long way from being proficient, and never will be. I, along with the vast majority of people with Type One diabetes, rely on injection pens for the administration of insulin (I am miles away from fulfilling any criteria for a pump), so bolusing remains for me a relatively unsophisticated - dare I say hit and miss - process of trying to whack the mole, ideally before the mole pops up. (...now where did that “whack-a-mole" analogy come from??)

I make no claim to being an expert in diabetes; quite the reverse, in fact, compared to many whom I have come to know through the online diabetes community, but I have certainly become more confident in the art of effective bolusing in recent years.

For me, two aspects of bolusing stand out.

Firstly, the timing of bolus injections of fast-acting insulin prior to eating: I was taught at diagnosis, nearly 23 years ago, that the injection of fast-acting should be just before eating (“wait until the food is on the table”) and for years I feared some kind of humiliating loss of sense and dignity if my food was delayed for more than a few minutes. However, in recent years, I have realised that for me, a bolus dose is most effective if taken well in advance - sometimes up to an hour, especially at breakfast time.

Secondly, correction doses: I used to be very cautious about injecting between meals, but these days, I willingly inject in response to a rising level, or ahead of a snack-attack. The result of this is that I almost always have more than the theoretical three doses of fast-acting a day.

I will add two very important caveats to this. Firstly that freedom to bolus with such relative recklessness is dependent on always wearing some form of CGM, which for me is the NHS funded Freestyle Libre. I have said it many times, but the ability to know more than just a snapshot BG value, but rather a clear indication of direction of travel, is life-changing. Secondly, that I am fortunate enough to be retired and therefore more in control of my time and activities than someone in a busy working life. When I was working, there wasn’t time to pre-bolus or correct, nor was the timing or nature of my midday meal in any way predictable.

I am well aware that my mastery of bolusing will never be perfect, and indeed that it could be far better with the help of an insulin pump and associated looping technology, but I am nevertheless grateful to the incremental improvement of knowledge gained through the online diabetes community, a better-late-than-never DAFNE course and of course the advice of  HCPs.

And having discovered the etymology of bolus, I am most grateful that I am able to indulge in bit of constructive mud-slinging – throwing a little bit more insulin into my body. There’s the customary song title for my post, a memory for those old enough to remember it, from that long, hot summer of 1976.

DISCLAIMER: Injecting insulin is a responsibility placed upon everyone who lives with Type One diabetes, and requires knowledge and caution. Nobody should modify dosage and timing without careful consideration of all the multiple factors affecting blood sugar levels and any changes to the timing and dosage should only be made with professional advice and guidance.

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[1] https://www.glaucoma.org/gleams/eyedrop-techniques-from-dr-andrew-iwach.php#:~:text=When%20you%20put%20drops%20in,the%20drug%20into%20the%20bloodstream.

I Will Survive - but I'd like a bit of help, please.

Cure for Type One Diabetes? “If there’s a cure for this, I don’t want it” sang Diana Ross back in 1976.

Well of course, if someone offered any of us living with Type One Diabetes a cure that was permanent and free from nastier long-term side effects, we’d grab it with both hands. There’s a running joke among people with Type One that a cure is “ten years away” - I remember hearing this when I was diagnosed back in 1997 - and for a while I kidded myself that it might be true. I remember my late mother saying she would gladly use her pension pot to help fund any treatment that would cure me, and whilst I politely thanked her, I soon realised that her life savings were not in any danger.

“Ten years away” isn’t true, never was and possibly never will be. I’m fully reconciled to seeing out my time on this earth in the company of my unwanted friend T1D. I hope I’ve got thirty odd years left, and it would be great to make it to 50 years, especially having been diagnosed as an adult. That’s my life goal, but it will require me to see my 90^th birthday and a little more for that to happen.

But if that sounds negative and defeatist, it isn’t. It’s just realistic, and I have to say that I had a “light bulb moment” after attending the wonderful Type One - Rise of the Machines event in London last Saturday, 24^th February 2018. 

Quick shout out to Partha Kar for making it happen, all the speakers, and Ben Moody and the team at TechUK for hosting. My light bulb moment is nothing particularly new, but rather just a clarity of focus about the way forward for managing Type One. Let me explain:

Rise of the Machines was all about the use of technology in managing - not defeating - Type One Diabetes. It was an inspirational day: we heard from some of the medical technology companies about their work in developing the gadgets and gizmos such as insulin pumps, CGMs and Flash Glucose monitors which have done much to improve the lives of those lucky enough to have access to them, and they deserve our applause and recognition for the work that they have done and continue to do to make our lives better. I am lucky to live in the era in which I do, and in the country in which I do. Then we heard from the big two charities, Diabetes UK and JDRF, who do so much to raise the funds required to fund technical and medical developments.

But we also heard from some of the stars of the world of #WeAreNotWaiting - those highly motivated people with diabetes, or parents of children with diabetes, who have used their skills in ICT, especially coding, to take what the medical technology companies have done and move it onwards in a way and at a speed that could not be achieved in the - rightly - cautious and regulated world of corporate medical technology.

Whilst the work of the #WeAreNotWaiting people on closed loops, artificial pancreases and the like is not for me and unlikely to be (it depends as a starting point on the use of insulin pump therapy, for which I am unlikely to be eligible in the foreseeable future), it shows what can be done and points the way to a longer-term future in which Type One Diabetes will be artificially managed to the extent that it can be a mere inconvenience rather than the full-time occupation that it all too often seems to be.

And therein lies the crux of the matter, and there are encouraging signs everywhere that people with diabetes, healthcare professionals and the scientific research community are starting to recognise it.

Diabetes is a condition, not a disease. Type One will not be “cured” in the foreseeable future. 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, especially one like Type One Diabetes which 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, 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 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 consultant who spoke at the Rise of the Machines event. 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 of 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. 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??

"Living by Numbers" - my Diabetes Story

It's not been a good week to be diabetic. We woke up on Monday morning to news headlines revealing a 60% surge in diagnosis of diabetes over the past 10 years. The mid-market tabloids featured front pages screaming about the "epidemic" which would "bankrupt the NHS", quoting our poor diet, sedentary lifestyle and bulging waistlines as the cause of this menace. 

Daily Express, Monday 17th August 2015

You had to look very hard to find any reference to the two types of diabetes. TV and radio did rather better, making clear from the outset that this story was largely about Type Two, but even so there was a sense that diabetes was being demonised.

Small wonder then that people with diabetes were soon up in arms on social media. In particular, the familiar call to re-name Type One was getting another airing, and many Type Ones took to social media to post pictures illustrating how active and healthy they are using the hashtag #RealLifeDiabetes, as well as reminding others how hard it is to live with this complex condition. It really is very frustrating when you have Type One, a condition which strikes randomly and has no connection with the victim's previous diet and lifestyle, to feel tarred with the brush of Type Two, which is always portrayed as a disease of a greedy and over-indulgent modern society.

I am not inclined to get too involved in the Type One/Type Two debate: it is not fair to accuse anyone of causing their own illness. If we set off down that route, we might as well start "blaming" people for having cancer, given known links between at least some cancers and diet and lifestyle. Nobody gets ill on purpose. I would prefer the two conditions to have different names, but it isn't going to happen.

However, perhaps this is a good moment to share my diabetes story on my blog , just as a reminder that  - like all other Type One diabetics - I am the victim of the fickle finger of fate, and not the author of my own misfortune and a drain on the NHS.

I was diagnosed at the end 1997, at the age of precisely 40. Until then, I had lived a life with minimal contact with the health service. I had a couple of standard childhood illnesses, leading to a couple of spells off school before the age of 10; I then managed an entire secondary school career without a single day's absence. I fell off my bike at the age of 13 and suffered a straightforward arm fracture, which mended in the standard six-week time frame. And that was about it. Prior to my diagnosis with diabetes in 1997, I had worked for 17 years as a teacher with a total of about four days off sick (two lots of two).

Moreover, I was a slim, healthy and active person: as a child I cycled to school, played football as a recreation and spent holidays fell-walking with my family. As an adult I cycled to work, tended an extensive garden and walked from my home to the local shops rather than driving. And I still do.

Then, at the age of 40, I had a very bad case of 'flu in the week running up to the the Christmas break at school - a week's absence for the first time ever. No real cause for alarm: there was a big epidemic and a number of colleagues were off at the same time. Then, on the day after I had started to feel better again, my condition took a nosedive, and I went to my GP, alarmed at this apparent recurrence of an illness from which I had just recovered. I felt tired, thirsty and run-down, but just thought it was a hangover from my first real illness in years. A routine urine test revealed very high blood sugar, and an alarmed GP (parent of three children whom I taught) informed me that she was pretty sure that it was diabetes, referring me to her colleague at the practice who was the specialist in diabetes. He told me to "cut out all sugary foods" and see if the sugar level fell. This puzzled me somewhat, as I have always had a famously "unsweet tooth"- there was little or nothing to cut down on. However, I agreed to do so, and came back a few days later to discover that my sugar level was higher than ever. "OK, said the doctor, we'll put you on medication" He was assuming, from my age, that I was Type Two. Looking back, I have to say this was a questionable diagnosis in the face of all evidence - I was slim, ate healthily and exercised plenty - but again, I went along with it and took the pills for a few days (including Christmas Day). 

It was only when I reported back with an even higher blood sugar level and no sign of feeling better that he finally wondered if it might be late-onset Type One. Off to hospital I went (only as an out-patient), where a consultant agreed it certainly must be Type One, and referred me to the clinic to learn the noble arts of injection and blood testing. I did all this without missing any days off work, despite feeling very tired. My school were very good to me, and as I live near to the school, I was able to come home for a rest at lunchtime and leave early when not teaching.

Two different insulins, two pens 
- my permanent companions.

Once the insulin started to have an effect (and that effect comes on almost instantly, as anyone with Type One will tell you), I was soon back to normal. By the Easter four months after diagnosis, I led my annual residential school trip to France with about forty pupils and five colleagues. I continued to do this every year whilst it remained part of my role at the school. By the June six months after diagnosis I was planning, setting up, organising and running the end-of-exams Ball for 200 Sixth Formers, a demanding job I undertake every year. In day-to-day terms over the 17 years since, I have continued to take on all that life and work throw at me, all with an unblemished attendance record in a very stressful job. I am certainly not a burden to anyone, and other than the cost of my insulin and test strips, the annual flu jab and my annual clinic review, I don't bother the NHS at all.

But let's not pretend it's easy Living by Numbers (to quote my chosen title). Living with Type One diabetes is a 24/7 challenge that we face on top of all as that we do in life, whatever that may be. You can never forget or overlook it for more than a few minutes. Every action, every piece of food or drink, every event needs to be thought through. Any departure from routine is potentially risky. Most infuriatingly, insulin - the treatment that you self administer every day in order to preserve your life - is precisely what threatens to bring you down in day-to-day terms. I think is fair to say we have a love-hate relationship with it!

My Diabetes drawer - all the stuff we need to keep going

An yet it could be worse. Let us not forget that. It was a lot worse until the discovery of insulin therapy by Canadian Frederick Banting in 1922, when Type One was in effect a death sentence. It is a whole lot worse in many less fortunate countries  where access to insulin is still limited or non-existent. The 400 000 of us who live with the condition in the UK have good cause to be grateful to our doctors, nurses, designers and makers of insulin delivery methods and blood testing kits who enable us to live normal, active lives. 

People with diabetes are also remarkably supportive to each other: in one of the best illustrations there is of the good side of social media, thousands of diabetic people of all ages, both genders and all backgrounds regularly support, help and encourage each other online in a spirit of togetherness and cheerful acceptance of a condition which can at times make its victims feel frustrated and lonely. It's no fun having Type One, although it is fun being part of a worldwide community of people who are very good at making the best of a cruel stroke of luck.  Ironically, I think that Type Ones are so good at looking after and understanding our bodies that we actually end up being disproportionately healthy in old age. So please, don't accuse us of being responsible for this illness, or of "bankrupting the NHS".