When I look back, there’s one vivid moment in 2016 when a thousand pennies dropped with a massive thud. I was watching a presentation about research into restoring hypo awareness. The slides made me reel as I heard someone describing me and my behaviour in minute detail. I imeddiately recognised I had a long standing job to tackle.
I left the auditorium in a daze realising that my difficulties with severe hypos over many decades may not be solely the result of my inept type 1 management, they could also be a problem related to my way of thinking and to many years of soldiering on with diabetes. As I recognised myself caught up in a vicious cycle of crazy thinking that looked something like this, it was a lightbulb moment.
Having had countless severe hypos, seizures and two car accidents – nobody hurt thank God – over a 40 year period, I’d come out seemingly unscathed. I was not afraid of hypos and for the last 3 years had been reliant on my alarmed CGM, so felt safe and untroubled. I’d not had a severe hypo since buying the CGM. But I was also reliant (pre Dexcom) on my long suffering Lifebuoy husband, bless him, who administered glucose and Glucagon in the early hours of many mornings, so avoiding the need for ambulance call outs.
I would frequently be bothered (it felt like a minor inconvenience) for hours at night but always got to work on time and I rarely spoke about my hypos. That’s apart from the time when Lifebuoy was abroad and I didn’t come round from an overnight hypo seizure until a call from the office at 4pm. And the time I collapsed at the tube station at 7.30am, but that’s another story – see my blog on the transition from animal to synthetic human insulin in the 80s… If an ambulance was called I stubbornly refused to go to hospital – such a waste of their time, and mine. I just soldiered on.
I never sought help. I believed I had the necessary knowledge and experience, so should be able to look after myself. I’m resilient and very independent – a gift from type 1! What could a doctor do anyway? Telling me to adjust this or that couldn’t possibly help. Hypos were always unexpected, unpredictable and my life and eating behaviour was anything but routine. The beloved patterns sought by clinicians were not present and anyway, my first car accident took place close to the invention of finger prick tests and my urine test records were, well, sketchy! I thought I was just a useless person who should know better. Hypos were normal for me so I just got on with life regardless.
Diabetes has never held me back from activities like diving and snorkelling in open seas many miles from land – and I’ve never perceived it as a real problem, just a bloody
nuisance. In retrospect, I was burying my head in the sand, believing I could function well enough even at 1.8mmol as my body became very accustomed to lows.
After the presentation I leapt on Helen Rogers, the DSN who’d given it, and asked if there was any way I could do the course she’d trialled with Prof Stephanie Amiel at Kings College Hospital. It sounded possible and the way was cleared after an upsetting discussion with my GP – he had to temporarily transfer my care to Kings, appeared very agitated by my year’s worth of Dexcom data and was not pleased when I disclosed my hypo history.
In July 2016 I attended the 6 week HARPdoc course or Hypoglycaemia Awareness Restoration Programme for people with type 1 diabetes and problematic hypoglycaemia persisting despite optimised self-care. Bit of a mouthful eh?!
It’s based on CBT (cognitive behaviour therapy) and taught us about
- the physiological, psychological and behavioural mechanisms that lead to low blood sugar
- how, as a result of repeated exposure to lows and our inappropriate responses to them, things malfunction, and
- the reasons why it can be difficult to retain hypo awareness symptoms once you’ve passed a certain point.
I ticked all the boxes and felt totally at home in the discussions, despite the strong feelings they awoke.
It was hard work (lots of homework!) and I found facing up to, owning and trying to alter my behaviour challenging. But it all felt so right and I knew without a doubt that it was exactly where I should be. The two course leaders Helen Rogers (DSN) and Victoria Francis (specialist diabetes dietician) were fantastic, showed exceptional insight and where needed, never let a loaded remark pass without challenge. We laughed a great deal, perhaps letting off steam after years of holding things back.
Relatives and friends were invited to the last day of the course to share observations and experiences. I always say that diabetes is a family affair, it affects everyone close to us. So it’s important for them to understand and support the behaviour changes we learned on the course.
There are multiple reasons for severe hypos including the need for a different regime or for better education and support. This course will clearly not help or be appropriate for all. Further research is now underway in three locations across England and in one USA trial (Boston, MA) to fully establish its efficacy, but results so far are very promising.
- New HARPdoc web site (with contact details for a current research project in London, Bournemouth and Sheffield – potential participants can self-refer)
- A Psychoeducational Program to Restore Hypoglycaemia Awareness: The DAFNE-HART Pilot Study
- Patient experience of hypoglycaemia unawareness in Type 1 diabetes: are patients appropriately concerned?
In an attempt to re-sensitise ourselves, the course taught us to pay great attention to all possible signs of falling blood sugar. I now get times when I feel low, which for me triggers very sudden exhaustion, setting off alarm bells. This is most noticeable when I’m physically active but less so if sitting quietly. I’m practising hard and feel optimistic, there’s definitely been positive changes in my behaviour but I still need my Dexcom.
So my hypo action plan is:
- to act on every single alarm and try to avoid going near to or below 4mmol in o
rder to restore a near normal adrenaline response
- to remind myself repeatedly of the airline safety announcement “Put on your oxygen mask before helping others”
- to be far more vigilant and treat lows with fastacting carbs (for me Jelly Babies not chocolate, bread or other less appropriate items!)
- to avoid stacking insulin corrections or rage bolusing when blood sugar goes high, and be forgiving when stuff happens – as it always will!
But perhaps most important of all is the realisation that it’s OK to be vulnerable. I’m still learning and that will never end, hypos are like babies, they need attention and care. I’m still soldiering on into my 52nd year with type 1, but I can now acknowledge and lick my wounds. This has been an important journey of discovery, it’s been fantastic to face the challenge and deal with it head on. I feel like I’ve now discarded a rucksack full of heavy rocks – that’s a massive relief and feels damned good 😀
I’m extremely grateful to have stumbled across an opportunity to tackle a problem I’ve never really acknowledged or spoken about with others – other than my trusty Lifebuoy. I’m lucky to be here and definitely wouldn’t be without this guy – thank you John. (PS he can barely swim!)