My fledgeling has left the nest: after nearly 19 years we’re back to just being a couple. My husband and I have been moving towards this for a while now but we were a little surprised how strange the house felt without our teenager. A little concern for how he was going to get on though we did meet up for a coffee yesterday morning.

Being a man, our Ken (he’s moved up north, so we get to use such terms now 😀 ) has left his childhood room behind with little to show that anything has been removed.

I remember leaving home – I made the bed with fresh sheets and ensured anything I wasn’t taking with me was homed in cupboards, shelves and/or boxes.

Not so with my lad. There is stuff everywhere and as we’re entering a cold and damp autumn, I cannot help but notice how many jumpers are strewn about his room.

I appreciate there are differences between men and women but this is beyond that, surely?

Given my last couple of posts, it was with some dismay I approach my half yearly review.

Yet, my Hb1Ac (that’s glycated haemoglobin to the uninitiated or how much glucose has stuck to a protein in my red blood cells) came back as 6% (or 42 mmol/mol) which is a stunning result given what’s been going on.

Analysts have worked out that’s an average of 7mmol/l (126mg/dl) over a three month period.  Which bring Disraelli to mind and his phrase: lies, damned lies, and statistics.  Because I have not had a constant blood glucose of 7mmol/l, especially the past 6 weeks.  Life has not been plain sailing in terms of my diabetes, it has been extremely stressful and a feeling defeat over constant hard decisions, fasting and shear battles.

Ellen Langer spoke about the Illusion of Control when speaking about compulsive gamblers and for me, given the image from my last post, it seems especially so for type 1 diabetics.

We can set everything up and it can work exceptionally for a few days but it is a truly chaotic system: a small change can have a big impact on out levels and requirements.

This is what makes us disabled not unabled. If we have enough insulin and equipment, we can deal with this and lead near usual lives, but it is not the same as not being diabetic.

I truly hope you are well. And this is not your state of affairs at the moment…

As a type 1 diabetic, it’s really easy to see your own body as a war zone especially when your beautiful control goes awry for any reason. (Actually, I love this from pinterest, although it seems to have gone!:

)

I’m not talking about getting an odd food bolus wrong – that’s really easy to spot, correct and carry on. No, I am talking about the stress events, the things that get the stress hormones going and kick the body off into a wild ride of highs and lows with no rhyme or reason to them.

I’ve had a virus the past few weeks (obviously a virus because I haven’t shaken it yet and generally with bacterially infections, I am a reasonably good fighter unless they’re lurking somewhere odd, like my sinuses).

So, I’ve had the increased basals, the sudden lows and an basal that just isn’t working without some intervention.

Sleep interrupted by highs that just won’t come down.

Blah! And this just a cold. Something minor. Isn’t it time for my flu vaccination?

Like many, I am sitting here with a cold: the first nasty cold of the season.

I get immunised against flu each year, so I know it’s just a cold. Viral, but limited in its impact to my upper respiratory system and of course my head.

It’s not a pretty picture and from the look of my results it’s been brewing up for a while but I am finally on the sneezing and coughing bit.

Brewing for a while?

The past four weeks have been utterly poor in terms of my basal rate and carb ratios working. Completely unpredictable. Very high blood sugars followed by devastating lows, Fun and games.

And of course the coughing is causing my rib to hurt again.

🙁 At least everything else is coming up roses. Or is that noses? Where did I put the vapour rub?

If you discuss type 1 diabetes for the first time with a newbie to the area, there are two fears they discuss.  Injections/wearing a pump and hypos.

Hypos have a bad press for good reasons: people do die from them, especially the young.  Of course your average non-diabetic has thousands of these a year because a hypo is any time your blood sugar is below 70mg/dl or 3.9mmol/l.  A non-type 1 diabetic doesn’t have to get their “insulin dose” right: they are dealing with such small doses they can self-correct with glucagon.  Everything is in a roughly 10 minute cycle (depending on the person) and unless something is badly upsetting the cycle, like not having any nutrition for 3 days (but obviously having water otherwise, you’re in bigger trouble than the hypo) or certain blood pressure medication, everything works seemlessly.

As a type 1 diabetic, things are a little different.  Our insulin is typically delivered into our subcutaneous tissue rather than into the stomach cavity, so our insulin works for considerably longer than 20 minutes.  To save us from injecting every 10 minutes, we either where a pump or take insulin via injections.  Injected insulins can last up to 48 hours, which means potentially two days before I’m at this moment, I need to have judged exactly what insulin I need.

Which is why I’m on an insulin pump, it makes my life much easier.  I’ve been pumping since December 2002 and my life would need to change dramatically to go back to injections (or my idea of smart insulin, where you inject infrequently and the insulin is released according to needs as required).

Instead of a 48 hour cycle, I’m on a 4 hour cycle, which still may mean I get things wrong occasionally.

Basal

I talk a great deal about basals: this is the foundation on which my insulin replacement therapy works.  If nothing else is happening, this is as solid as a lump on concrete.  If I have an infection, the wrong bit of my menstrual cycle or a huge amount of stress, my basal does not automatically change to cater for that change in requirements.

This is why many are looking towards the The open source artificial pancreas system: taking readings from the CGMS I wear and controlling my pump based on those values.  The promise is that if your basal is good, it should be able to stop hypos (by shutting off the delivery of insulin) and prevent highs (by turning up the basal rate).  This is called closing the loop, making the pump an automated system.

Sounds great, are you doing this?

Basal rate analysis

Not yet.  Bear in mind if I stop my insulin for 15minutes now, it’s potentially the blood sugar result in 4 hours that is going to suffer and my basals are anything but flat.  The impact when I’m using basal rate 4 of stopping my insulin between 4am and 5 am is going to be much more significant that if I do the same thing while using any of the other basals.  But the same is true for basal rates 2 and 3 between 8am.  Increasing my dose between 10 and noon would be impacting me just before I hit rush hour.

The impact could be huge.

That sounds very dramatic, but my Hb1Ac has always been below 8% since diagnosis.  If I’m high, I generally correct so that rarely lasts more than 6 continuous hours.  My lows, when I’m awake, are generally felt and dealt with – I have few lasting more than 30 minutes if I’m awake.  Using my Abbott Freestyle Libre, I can now make real decisions about my overnight basal without skewing the results (that makes a huge difference).  It doesn’t mean I am “not diabetic”, but it means the impact of my diabetes on my health is greatly reduced.

But it’s hard work and very stressful.  I’d love to close the loop but this has to be acting quickly enough to make a difference.

But that’s not the reason for my post.  I was talking about hypos.  The odd hypo once in a while is normal and I am beginning to look at closing the loop on my pump with my flash glucose meter.

I’m using a tool called Glimp (on android) to do that and it classes hypos according to your blood sugar level – so anything above 3.7mmol/l is classed as mild, 3.6-2.6 is moderate and below that is severe.

For me, that isn’t really how it works.  If I have got a meal bolus wrong, say I’ve had a big meal and an hour after food my blood sugar is 6.7mmol/l (this happened once).  I’d had 7.5iu to cover the big meal so I still had 4.8iu of active insulin working over the next three hours and I felt as if my blood sugar was below 2mmol/l.  I treated with 40g of CHO and in three hours time, my blood sugar was 7mmol/l (I’d obviously slightly over treated).

Not hypo yet

It would have been a “severe” hypo but technically speaking, at the time it wasn’t.  Indeed, if I’d been wearing a CGMS at the time, things would have looked really promising and only my experience would have told me how much trouble I was in (this was before I was using my insulin on board calculator).

I’m fairly high functioning when low, when I was in my 20s, I’d missed a drop and been happily working when I thought things aren’t right: my blood sugar measurement was 2.2mmol/l!  I treated and went back to my work (I’m a computer programmer) and apart from the last couple of minutes, you wouldn’t have been able to tell.  If I’d been in a meeting and talking, I’d have picked it up much sooner, but sitting at my desk, quietly plugging away, everything still worked.

Which has always made me very nervous and probably why I test as much as I do.

Lily Nichols is a non-diabetic who wore a Libre for a few days and talks about it here.  The interesting thing here for me isn’t her diet but the number of “hypos” she has and the duration as seen in her graph.  For us Brits, 180mg/dl is 10mmol/l and 70mg/dl is 3.9mmol/l – so she’s not going that low but the duration is surprising on the fourth day.

Her analysis is not bad although she doesn’t know what her body is doing in the background.  I hear many people rave about oatmeal (Lily’s had it with honey which almost certainly accounts for the spike and her body potentially wasn’t used to have such a meal at this time, so it probably caught it unaware: do not dismiss this, the human body adapts very quickly.  She runs low night: I wonder if she went out that night or was active in some other way that didn’t usually happen causing the dip.  If Thanksgiving was a day she usually had a big meal, her body may not have batted an eyelid.  I see this from my own results, not just from my insulin doses but how the body digests the food: My Sunday lunch, I eat 5 times the amount of carbohydrate that I normally do during the week, but rarely get high blood sugar from it.  I think that’s because, that’s my normal.  I do seem to “store” that energy in terms of muscle refilling as typically I do a lot of exercise on a Saturday.

Just a thought…

This is a piece about what it’s like to be diabetic when nothing is working.

“Life is pain, Highness. Anyone who says differently is selling something,” Wesley to Buttercup from the Princess Bride movie.  We all have those those when nothing seems to be going right, whatever we do doesn’t work and it just feels like a struggle.

When you have something like type 1 diabetes, anything that changes the playing field can literally be painful, if it causes high blood sugar, or a frightening game of catch-up if your blood sugar is low.

Most of the time, life ticks along simply enough.  There are a few moments when things aren’t quite smooth sailing, but mostly a simple correction straightens everything out.

Last year, Adam Brown shared the 42 factors that affect blood glucose.  When I wrote my book I grouped these into three main influencers: stress, ingestion and insulin.

Insulin generally speaking lowers blood sugar.  Although it isn’t quite that simple because a very small hypo may self-recover.  As my control tightened with the long distance bike riding that was really noticeable and it was really important to understand my basal rates and insulin on board (from boluses) before over treating with carbohydrates.  Over night, the body can self correct to such an extent that there can be a high although I’ve not observed that since I’ve been using pump therapy and been much more closely aligned to my basal needs compared to long acting insulin.  What do I mean by a very small hypo?  Well, if my blood sugar is above 3.8mmol/l but below 4mmol/l – indeed if we take the accuracy of the testing methods into consideration, I may not actually be hypo at all.

Insulin on board?  I take a bolus of insulin to cover the food I eat on top of my normal basal levels of insulin.  That insulin last for approx. 4 hours for me.  If I had 4 units 2 hours ago, I have used a couple of units worth and still have 2 units of insulin working in my body for a couple of hours or so – for me, that can lower my blood sugar by 5mmol/l so unless my food taken at that time is still being processed and absorbed, I may need 10g or so to ensure I am not hypo in two hours time and I would tend to do that with something like a mini-coke or very small glass of fruit juice.

Ingestion is food and drink.  This can do either, although the only thing I’ve found that lowers my blood sugar meaningfully is alcohol which is why no-one should drink on an empty stomach.  Food and drink is a highly complex subject and in this I am not including painkillers or other medication, otherwise it really does but very complicated very quickly.

Stress, for me, is everything else.  Your circadian rhythm shows the stress your body is under from your bodily functions and queues from the sun.  The way you get excited before your favourite food turns up, is a kind of stress.  The nervousness you feel before sitting an exam or driving test, is your mind asking your body for some help during a stressful time and in response, your body releases cortisone and adrenaline in response to a request from the hypothalamus or your body gearing up to fight the cold virus your nearest and dearest have given to you.

If you’re not diabetic, that response is not always useful, but you respond to the cortisone and adrenaline by dumping stores of glycogen from your liver and muscles and your pancreas ensures there is enough insulin to make use of that extra energy.

I don’t do that, I feel grotty, test my blood sugar and then treat the resulting high blood sugar.

Sounds like a plan

When fighting an infection, my body, like a non-diabetics, releases glucose stores ready to produce a fever.  Only that doesn’t happen because there’s nothing to make use of the energy.  The feedback loop then gets twisted and because my body is under stress and short of energy, it can release more cortisol and adrenaline, raising my blood sugar further.  Meanwhile, the infection is still there, now with a load of unaccounted food for it to feed off.

It’s a mess, this is a war zone, with no areas without conflict.  Except, I am trying to fight the good fight and dose up with insulin.

Which can alleviate the stress, which then causes a drop in levels of the stress hormones and I am then dealing with a massive hypo.

And that’s if my body is able to fight the well feed infection: bacteria and viruses are simple, when there is food, they multiply.

Somebody gave me a cold four weeks ago, when I find out who…  In the meantime, my control has gone out of the window.  I’m eking by, largely by fasting and watching it like a hawk, going from high to less high to low, but I am so knackered.  The nausea when I drop is the pits.

Medicine which soothe the symptoms are great and can lower my blood glucose but I end up in a “dipping cycle”, as they wear off, my blood sugar climbs, as they become effective, it drops.

It feels like I am running a marathon 24/7.

Of course, I am not externally showing any signs: the odd sniffle, sneeze and cough, but not obviously sick.

On with the game.  Enjoy yours 🙂

Oh, and a reminder to all those with a compromised immune system out there: get your flu shot this year, please.  Because however bad the cold is, flu is a killer for us.

I love proverbs and adages, for me they encapsulate our collected knowledge to some useful sound bites.  I love this one from Lao Tzu: The journey of a thousand miles begins with one step.  It’s much older than that phrasing, as seen above, and for me it ties in with the idea you cannot judge a person’s actions until you walk a mile in their shoes.  Everyone’s journey is unique, at times it’s easier and at others, it is so much harder.

On Sunday 4th August 2019, at 5:32am my husband and I drove to Stratford and I worked out where I needed to be to participate in the Prudential Ride 100, a cycle journey around London and Surrey (not the easiest thing to do if you weren’t in the first “wave of riders”).

The 100 mile route

Of course, being type 1, my day didn’t start there.  I woke up a bit earlier than planned (4:35 instead of 4:50), knowing that my blood sugar was high even before I reached for my flash glucose reader.  Instead of following all the advice for carb loading before the start of the long ride, I was busily trying to drag my blood sugar down.  After 30 mins of trying, I gave up and inserted a second new cannula and packed a breakfast.

My ride in numbers

Experience had had us loading the car the night before, so armed with the consumables for the day, we headed south.  I had breakfast at 5:55 as we were approaching Colchester on the A12.

The approach I took to lower my blood glucose and ensure I could do the ride at 8:32am worked, and though I was a little high before I actually started riding the 100 miles, it was close enough with my programmed basal – basal rate 4 was the plan for that day.

Basically, normal basal up to 8am, then for an hour, up to 120% of what I normally have, then drop from 9am to 80%.  That would cope with the initial push, where I dump some of my glycogen stores from my muscles and then my blood sugar starts to naturally drop.

After that first hour, I set a timer on my fitbit and every 45 minutes had a torq gel: 28.5g of available, easily digested glucose.

Torq gels

After the really steep hills, I had one at the top too and reset the timer.  I’d worked out, for my estimated 8 hour ride, 10 should be plenty, but I ended up carrying 12 just in case.  That was not the right number as we’ll see later.

As can be seen from my FreeStyle Libre graph, you can see when those gels were taken, every little rise in blood sugar.  A rise then a dip, a rise…   You can see there are some gaps in the graph: I love the Libre but it does have difficulties when my blood sugar is changing very rapidly.

What my phone caught

The first four hours dropped by, nice and easy even though I was setting a good pace.  Then my phone’s battery died.  Thankfully, I had my Libre’s reader with me, but my husband had headed off to catch up with some friends as 8+ hours is a long time to kill.  Basically, this was noise, we were meeting up at the JDRF picnic at the end of the ride, so everything was going to be fine!

In 3hours 55minutes of moving time, I had covered 51.3miles: an average of 13.1mph, which was well within my reach.  I’d peaked going down hill at 28.9mph and even on the steep hills where many were getting off their bikes to walk, I was keeping on the bike and dropping down to 4mph.  My phone died at 13.10 and I completed the ride at 17:10, so I kept that pace up even though it felt like it was mostly up hill at that point ?.

Lies, damn lies and statistics

Of course, that doesn’t speak about how it felt.  100miles is a long way and nobody in their right mind should do it without some prep – as a type 1, that preparation must include blood sugar management.

It was interesting how many people struggled with energy management and struggled towards the end.  They were probably much fitter than me and had lighter bikes (my push bike weighs in at 30kg when I took the rear rack off).

I had my gel packs (342g of CHO) and two Soreen Lunchbox loaves, which were 10.2g of CHO.  That’s 352.2g of carbohydrate over an 8-hour period.  I had 12 units of insulin over this period, 10.9iu as basal insulin, this rest as corrective boluses.  This is not normal eating: the gels are absorbed easily; I don’t even have to chew them.  They contain salts and taste nice.  It meant, I could just use water during the ride, and I had nearly 6litres of water.

From 7am onwards, I didn’t eat anything else until after the ride had finished.

It wasn’t all plain sailing: there were some serious crashes, so a couple of the hills were closed off.  Having been in a bad cycle accident, I hope the riders involved recover soon.  I met many other crazy riders, including some raising money for Diabetes UK and JDRF.  Some of them were a bit shocked I was “riding on my own” but I really wasn’t, what with the marshals, the other riders, the JDRF team and of course my husband, I was far from my own.

I had planned to have rests at the “hubs” food, drink and toilet stations.  As I was one of the last “waves” to set off, I didn’t get the chance to stop at the first one (“you won’t complete the course in time to do 100miles”) which happened at the 3^rd hub too.  Thankfully, I was self-sufficient sugar-wise and in the Surrey hills a really nice gentleman was filling everyone’s water bottles up, which meant I didn’t need to ration my water.

Easy, peasy then!

I had a small issue with my phone – it dropped out of its holder on mile 72.  Being a newish phone, I stopped, which caused my rear wheel to lock.  Having gone down during a rain shower on the 18^th July and cracked a rib, I released the brake and sat the bike back upright.  I pulled over to the side and stopped better.  Only, while I had remembered that I had a proper cleat pedal on the left hand pedal all the times I’d stopped before, my mind was on my phone and down I went.

One cleat and one not

One cleat?  What are you on about?

I am a type 1 diabetic and reasonably uncoordinated and since my accident in 2017, not that confident on a push bike.

I had bought two cleat pedals and a pair of shoes to use them, but to be honest, I toppled over a couple of times which left me a sobbing wreck.  I’d said I’d ride a 100miles and cleats would help me achieve that, so I had to find an alternative way to make cleats work for me.

The answer I came up with 7 weeks ago was one cleat pedal and one non-cleat pedal.  I means I look a complete wally as my shoes are odd, but I get all the advantages to wearing the cleats, especially on the hills, but a lot less time spent having to plan to come out of the cleats to stop.  Only I forgot when I dropped my phone.

Thankfully, it was a topple at zero miles an hour and I was wearing full length lycra trousers, so nothing worse than bruising to my skin and pride and the case my phone was in kept it safe and sound.   A very kind cyclist and the marshal I went down in front of both helped me get back on the saddle.

You did it then

I did.  With hindsight, I did need one extra pack of gel, so 13 rather than 12 and hold my nerve just before 3pm so I don’t correct.  That would have meant I could avoid or treat the hypo at the end, the stop and then walk just used up the last of my energy.  I need to figure out my phone too, so the battery lasts the whole 8hours.  I overate at the picnic, a big thank you to the JDRF support team who looked after the 103 riders for JDRF – I was one of 24 who was type 1!

Unofficially I did it in 7hours 48minutes of riding.  I am waiting on confirmation from the organisers on their measurements.

Would I do it again?  A bit early to say.  It felt pretty good finishing and basically, I pretty much made food and insulin work for me, but it did take a long time getting there 😀

If this has inspired you, I will put down all my training and approach down for other type 1s to do this themselves. Plus there’s always the place to sponsor me to raise money for JDRF: https://uk.virginmoneygiving.com/SamJWatkins – JDRF fund type 1 diabetes research to improve lives and one day eradicate the condition for good.  Your support makes this happen.

I’m a night owl, have been ever since I was born. My peak part of the day (and when I have the lowest insulin requirements) is just after lunch. (Image from wikipedia, photographer is Thomas Roessler).

This is not at all compatible with having a serious career and indeed as a young teenager, I felt doomed to rushing to school having been up all night.

Then I had a couple of epileptic fits during the night: not uncommon in teenagers and we found my trigger was apartame – I haven’t had aspartame since 1986 as a result.  We know they are fits as my blood sugar was above 7mmol/l and there’s no way they were caused by hypos.  I do now get fits on the odd occassion with hypos but with the Libre and not having long acting insulin, they are really rare and again, only during sleep.

Because my fits were during the night, I had to have an EEG which only happen as an outpatient during broad daylight.  The man performing the test assured me I would sleep and he was right.  What you do is shut you mind down (some people call this meditation).  Picture black and stop any stray thoughts.

Since that afternoon, if my blood sugar is normal I can sleep.  By preference, I go to sleep at 2am and wake at 9:45am.  But I can get enough sleep to function if I want it and my blood sugar is below 6.5mmol/l, as measured by my Libre.

High blood sugar keeps me awake.  I check it at 8pm and do everything I can to bring it down as going to bed with it above 8mmol/l is a recipe for restlessness.

Hypos normally make me sleepy at night and I often just switch my pump off for 15-30minutes if my blood sugar is below 4mmol/l and only treat with food if it’s below 3mmol/l.  I find if I eat, it’s really hard to stop climbing above 7mmol/l which makes sleep difficult.

By preference, I don’t like to eat after 8pm.  I do drink: tea, water or a small measure of alcohol.  But if I do that to excess, I just wake up needing the loo!

So there you have it, the secret of becoming a lark instead of an owl.

(Thank you to Wikipedia for sharing this image from Bernard DUPONT).

By the way, I was screened twice for the epilepsy.  With aspartame in my system, I tested positive.  3 months without  any gave a negative result.  When I give up driving, I will try to see what aspartame does for me as a grown up until then I am avoiding it like the plague 🙂

There are 67 days before I head down to London and do the Prudential ride for the JDRF.

According to fitbit, I am now “good-excellent” in terms of my general fitness although I have put on a little weight the past few weeks (bad hay fever, so have been adjusting my basal rates rather than all out cycling).

Tomorrow, I am looking to cover 70-80 miles – I am thinking about heading out to Felixstowe and the follow route 51 to Thurston (41miles) or Bury (45miles).  From there, I can head back home making 70odd miles.

I’m now holding a pretty steady 13mph, peaking to 22mph on the absolute flat.  Up-hill, I’m still slow but can easily hold 4mph on a seriously steep hill.

My recovery time is much better, less than 6 hours for the long rides.  My legs are amazing, I have contoured muscles – I am not 100% sure they are necessarily pretty, but there’s very little spare flesh on there.  My stomach is stronger too.

My routine is now to cycle for 10miles or a maximum hour then have a draw of water and a glucose gel – I can pretty reliably do that while pedalling.  My water lasts for about 30miles.  That’s a big break for me – 10-20 mins, more than a gel pack: I like Soreen Lunch-box loaves and a mini-coke.  30g of CHO and a good stretch.  I tend to stand as most of my journey has been sitting 🙂

That’s the plan tomorrow.  The first time I’m testing it over 65miles.

As a type 1 diabetic, life can seem very unfair despite some fantistic legislation which should give us a fair playing field.

I should be protected by law when my blood sugar impacts my behaviour: I keep good records and can demonstrate where my blood sugar varies outside the norm.

However, in practice, this is not generally treated as anything but an excuse.  I have been called lazy because I have turned up to work after a massive hypo late – “can’t you set an alarm clock correctly” and comments about having to pop out to get some food to correct a low blood sugar.

However, the Equality Act 2010 says that is not appropriate behaviour from a company or its representatives but this still happens.

It doesn’t help that because of headlines such as.

Because obviously, I want to be ill, I want to be diabetic otherwise I would be doing everything I could to reverse it.

Only, despite being a grown up now, I cannot reverse it – no-one can because I have an autoimmune disease.  Every so often, I think I have enough evidence to say that my body leaves enough working cells to make a difference for a few hours in a day (normally leading to a massive hypo) but that tends to be when other things are happening like getting over a different infection.

Those days are not trivial and the impact can last several days.  But never longer than those few precious hours once every couple of years.

I would stave to “avoid diabetes” but it doesn’t make any difference, likewise I would give up meat.

But there is no point, because nothing works long term.  If I do anything, I need insulin.

Interestingly, given all the hype in the media, only 40% of type 2 diabetes benefit from losing weight long term.  So that doesn’t seem like a battle you can win either.

Interestingly, my consultant wrote a letter which explains the impact high blood sugar has on me and why I strive so hard to have euglycemic control.  He feels all diabetics should be treated with empathy and compassion.

It would be great if, as the Equality Act 2010, employers would do that.