I am not 'Set Adrift on Memory Bliss', thank you.

(That's a reference to a P.M. Dawn song, for the young'uns.)

Dawn Phenomenon.

It sounds innocuous, doesn't it?

Dawn... That time when light gently filters through the window, peeking through the cracks in the curtains. Birds sing. The occasional early morning commuter's car rolls by. A gentle turn of the body in bed to get a few more precious moments of sleep. You can hear Morning Mood by Grieg, can't you?

Phenomenon... It's just, like, this thing that happens, man... </TheDude>

The reality - waking with blood glucose levels in hyperglycemic range. Here are the symptoms I experience:

• Vice-like headache
• Powerful need to urinate
• Dry mouth, eyes, nose... all mucus membrane areas. Yes, even there.
• Joint and muscle ache and inflammation
• Fatigue

For some PWD, this is an occasional thing. For me? Every. Single. Day.

This is what it looks like in a CGM representation. This was my morning on 05 Jul 18.



For the non-T1D folks, here's what you're looking at:

Ideal range for people with T1D is 70 mg/dl to 130 mg/dl. At night, the lower bound raises to 80 mg/dl to have a safety buffer in the event of the basal (background) insulin use profile causing a dip.

The upper limit is lowered overnight to prevent waking up with the symptoms of hyperglycemia.



For most PWD, Dawn Phenomenon isn't a thing. If their basal injection or pump rate is correct, they'll have that relatively flat line that you see between 0100 and 0400 all night long. Whatever they went to sleep at, they'll wake up +/- 25 mg/dl.

And then there's people like me...

I usually get about 6-7 hours of sleep a night. I fall asleep sometime between 1 and 2 am and wake between 7:30 and 9 am.

Last night, I was running high until about midnight due to a high carb/high fat lunch and dinner. The correction dose I took around 11pm kicked in fully a little after 1am.

In a 'normal' diabetic (hahahahaha!) this would have resulted in a waking BGL somewhere around 100-120 mg/dl.

I have finally realised that the sheer exhaustion I wake up with every day is the reason I tend towards afternoon naps. Part of it is that I am just tired by then, since the overnight sleep wasn't restful. The other part of it is that it's the one time I sleep where I generally don't wake out of range.

What's the solution?

1. Some people have had success with zero-carbs after 4pm. 
2. Others only have relief from being able to set differing basal rates by time with an insulin pump. 
3. Some people have had luck with the more modern basal insulins (Toujeo, Tresiba).
4. Some people on MDI (multiple daily injections) set an alarm and inject a correction dose before the rise happens and go back to sleep.

I've tried 1 and 3. Zero carb after 4pm reduced the peak of my Dawn Phenomenon,  but didn't eliminate it. Toujeo taken in the evening is what I'm doing now and resulted in this trace.

But the good news is that it looks like my basal dosage is good for the times when my body isn't busy telling me "I made you glucose, HERE!"

If it can't be measured, does it matter?

Metrics.

What are they, medically speaking?

Usually numbers. For diabetics of all stripes, it's usually blood glucose level numbers, HbA1c, time in range, ketones, the presence of dawn phenomenon, numbers of and severity of hypos, etc.

These are objective and immutable. Your GAD antibody test numbers determine whether or not your body is destroying the your insulin-producing beta cells. Your c-peptide test shows how much insulin (if any) your body is producing.

These are the metrics used to determine eligibility for certain tech available to type 1 diabetics in a lot of places.

What's missing? The squishier things. Mainly quality of life.

And here's why that's probably the most important thing and my confusion as to why it is constantly left out.

Chronic conditions are chronic.

I know, fuck me, right?!

If you've got some nasty but tolerable side effects from a 14 day treatment, you can usually just roll with it because hey, it'll be over in two weeks.

There is no 'over' for us, except for death. (Some would argue those who get dual transplants, usually kidney and pancreas have an 'over' but they're just swapping the pain in the ass of T1D for the pain in the ass of being a transplant recipient.)

Story time!

When I was newly diagnosed, I was told that I would be able to lead a 'normal' life. That's a lie. I can lead a facsimile of a normal life but it requires constant attention. Sometimes it's high level attention, sometimes it's low level attention, but having T1D means that there's a part of your brain that is constantly on T1D duty.

Upon realising that this was my 'new normal', I started looking at what was out there. I found Libre, I found Dexcom, I found a variety of pumps.

Wait. I can have a bit of tech attached to me that lets me be 4-hours-notice spontaneous rather than 24(+)-hours-notice spontaneous? SIGN ME UP.

So I asked my endocrinologist consultant "How do we make this happen?"

'Go to DAFNE,' they said. I went to DAFNE.

"Okay, how do we make this happen?"

'We'll discuss it at your next appointment,' they said. That next appointment that was supposed to be six months on but was pushed to eight months because of consultant illness, holidays, etc.

"Okay, how do we make this happen?"

'Looking over your information, you seem like a good candidate. We'll discuss it at the next pump assessment clinic. They happen every two weeks.'

"Great! Let me know when I need to come in."

Three months later...

'Your A1c is good and we're not seeing any indication of dawn phenomenon [note: their meter reader wasn't working so they had none of my meter data], so... Are you planning on getting pregnant? No. Sorry, we can't recommend the pump for you.'

I went home and cried.

I worked so hard in order to qualify. I put aside the time to do the soonest DAFNE course they had spaces in. I worked hard to reduce my A1c. I worked hard to be a 'good' diabetic.

And I honestly felt like the thing that was my biggest concern - burnout - wasn't being taken seriously. Because it's psychological. Because they've had people who hated the pump (which impacts me because I'm the same as those people?). Because my quality of life with a chronic condition doesn't matter.

I am stuck with this until I die. (And please, no articles on the latest 'cure trials' - it turns into 1984 where 'The cure is ten years away. The cure has always been ten years away.')

I am stuck with a chronic autoimmune condition that affects every aspect of my life until I die.

My relationship with food. With exercise. With my husband. With my family of origin. With sleep. With work...

There is no part of my life that isn't touched by being type 1.

And yet, because there is no easy way to turn it into a number, my quality of life gets little to no consideration.

Because I'm 'well managed'. Because I'm 'compliant'. Because I'm not in a 'crisis situation'.

Why does it have to turn into a situation where I am actively in harm's way in order to be considered for a device that will make my quality of life better?

Just because there is treatment for this chronic condition doesn't make it any less chronic. It doesn't make the psychological strain disappear. Quality of life needs to be seen as important to the consultants as the more easily measured metrics.

When you tell me my quality of life doesn't matter, what I hear is that the only thing you care about is my longevity, not who I am as a person.

[Addendum, 05 Jul 18: I do not fault the consultants entirely. They are going based on the edicts given to them by NICE in the UK and insurance companies elsewhere. Where I fault the consultants is their lack of transparency and the number of times I've been told 'you're a good candidate' and then followed by a no because I haven't met some unknown criteria. The obfuscation on the clinical side makes this chronic condition even more frustrating than the baseline.

I fully understand that the vast majority of Diabetic Health Care Professionals wants the best for their patients and they're hamstrung by various entities. Tell me. I will share your frustration and be more understanding than if I get the runaround.]

Basal Switching: Insulatard to Toujeo

I switched from Insulatard (an intermediate insulin) to Toujeo recently.

This was after having been on Lantus and being taken off (site reaction) and then Levamir (was like injecting water). I've been on Insulatard for the last two years. I have had a tolerable relationship with it. It was just barely doing its one job. It was time for a change.

Night 1:

Toujeo suggests an 80% reduction of the total daily for your intermediate/NPH insulin. So I went from 14u to 11u.

Unfortunately, Toujeo takes about five days to get fully entrenched and Insulatard is all 'fuck all y'all, I'm out' after about 10-12h. So my night was fun.

Once the Toujeo kicked in, it wasn't too bad, and I'm hoping it has a positive effect on my dawn phenomenon/foot on floor issues. I still woke up north of 350 mg/dl (19.5 mmol/l).

Day 1:

The weirdest sensation to wake up to so far as a person with Type 1 is having dry mouth, eyes that feel like they were rolled around in the desert and reinserted, a powerful need to wee... and being sticky because it's humid out. I'm not sure how there can be so much difference between internal and external but there we are.

Day 2:

I am forever in the Sahara. The wind never abates. I have always been thirsty, I will always be thirsty.

Day 3:

There's two days left of titration. I suspect the dosage is low. While the smart thing would be to wait until the full titration period is over, I am renowned for my impatience. Upping by 1u tonight.

Day 4:

Better, but not perfect. We've downgraded from the Sahara to southern Portugal in the dry season. It's an improvement.

Day 5:

WHY IS THIS NOT PERFECT YET?
I am blaming my frustration and desire to cry on high BGLs over the last five days. I just want to feel normal, thanks.

Day 6:

One more unit increase. Debated on jumping 2 units, but using the rule of 'no more than 10% of basal increase at a time', I'm trying to be good. Especially in light of Day 3's impatience.

Day 7:

Fuck this. Another unit up. Waking over 300 (16.6) is not what I signed up for with this new basal, thanks.

Day 8:

Did I... Did I just wake up in the low 300s? Okay, it was 311 mg/dl (17.2 mmol/l), but I'm going to take it as a good sign. Another unit up tonight. Yes, I know, I should be more patient, but waiting three days between increases means that I'd be at this for weeks to get sorted. I just can't.

Day 9:

Woke up at 249 mg/dl (13.8 mmol/l). Not perfect, but pretty close to my normal thanks to Dawn Phenomenon. One more unit, for luck.

Day 10:

Inadvertent basal testing in the afternoon (got distracted, forgot to get lunch) shows a nice flat line in the 150 mg/dl (8.3 mmol/l) range. This is an improvement from the flat lines that exist only because I maxed out my Dexcom.

Day 11:

Woke up in the morning at 216 (12), which is more in line with my usual. I'm hesitant to increase more without basal testing since yesterday lunchtime showed a pretty flat line. Would have been lower if I'd compensated for the Dawn Phenomenon (I can't abbreviate it to DP, my brain goes elsewhere) and the Foot on Floor rise - but without knowing if it was going to send me low during the day, I figured probably best to err on the side of not hypo.

Final dosage: 15 u.

So what's next?

Basal testing (again) and reworking my carb ratios, since the evening ones were compensating for the drop off with Insulatard.

The 'good' news is that it doesn't seem that any of the current basals will address my Dawn Phenomenon/Foot on the Floor issues sufficiently and the main solution for that is an insulin pump with programmable basal rates.

Manually being your own organ is a huge pain in the ass.

On Treating Hypos...

[ Author's Note: No information contained herein is designed for or should be taken as medical advice. I am not a doctor. I am just a person that lives with Type 1 Diabetes. ]

A lot of people out there, those with diabetes of any stripe and those without, seem to think that because T1D is treatable that it is also predictable.

Ask anyone that's lived with it long enough and you'll get this approximate response:

It's predictable within certain bounds. I know that 1 unit of insulin will generally drop me 50 mg/dl or 3.0 mmol/l. Generally.

Unless I'm exercising. But only cardio or walking. Sometimes push ups and mountain climbers.

Unless I'm sick and then it doesn't do squat.

Unless I'm ovulating or menstruating.

Unless I'm stressed out.

Unless the weather is hot. Or humid. Or both. Or neither.

Unless... You get the idea. It's a capricious fucking disease.



This was my day today after doing pretty much the exact same thing as yesterday. Except this morning I woke up north of 200 mg/dl. I corrected for that, ate the same food as yesterday, exercised at the same time, and due to some random bullshittery I ended up down around 39 mg/dl before the jelly beans and lunch kicked in.

Let me interject here and also say 'thank everything for Dexcom' because I didn't feel the hypo at all before I got the 'hey, you're going low' alarm. Even when the urgent low alarm kicked in, I was still feeling okay. Tired because I'd just done exercise, but generally okay. Feeling okay at 48 mg/dl (2.6 mmol/l) is not the greatest thing. I've lost my hypo awareness and I don't know how it happened because I do not have a history of excessive hypos, severe hypos, or hypos occurring on a regular basis.

Right, so... Watching the Dexcom monitor what's going on, as soon as I hit over 100 mg/dl with a straight up arrow, I bolused for half my lunch carbs.

I'm pretty sure my old DSN would yell at me for that. Why did I do that, though? Two reasons.

1) Thanks to the app I use to track blood glucose levels and dosing (MySugr), I had an approximation of IOB (insulin on board) to keep myself from going hypo again. I also have my carb ratios down pretty solid.

2) The rollercoaster of hypo to hyper wrecks me. I'm pretty much worthless for 18-24 hours after a day with two or more hypers with a hypo in between.

Also, even though I'm only 867 days into this Type 1 Diabetes lark, I've learned what works for me most of the time. I know that if it's a mealtime and I've gone hypo just before and it's not due entirely to external insulin that I can do about half my usual dose and come out okay. I also know that I can't do this when my meal is greater than 60 grams of carbs.

It's a skillset that most people never need to know. For those of us with Type 1, it's a great advanced skill for our toolkit.

** How it works for you will be different than how it works for me. If you are going to experiment with this, err on the side of caution. **

There will always be something that interferes with the elusive 'perfect control'. What we've got is data. What we do with it is what matters. All anyone can ask of someone with T1D is that we do our best. Some days we can do everything. Some days, life gets in the way.

But you're not alone in this. Every day that we wake up and live despite having to act like a tiny sliver of an organ that most people never think about, we're doing our best. And that's all anyone can ask.

(Happy to report that I'm currently chilling at 130 mg/dl with a flat arrow an hour and a half after the hypo.)

Diabetes Week 2018

This week is Diabetes Week in the UK. It's 2018. There is no cure for Type 1.

Okay, now that we've gotten the absolutes out of the way, let's go for the subjective.

Books! There are books out there. Some are good, some are adequate, some are a matter of opinion. I'm not going to slag any book off, but I will share some of the books that I think should be in every person with T1D's library.

We are ultimately in charge of the vast majority of our own care.

---

Think Like a Pancreas by Gary Scheiner

If you've been recently diagnosed, this book tells you everything that your endocrinologist and specialist nurse didn't have time to cover in your appointment. You walk out, your head swimming with information and (if you had the wherewithal to remember to do so) hastily scribbled notes that make no sense to you right now.

This book explains so much of what you need to know about how insulin works, what it does, what it doesn't do, and how to interpret the data that now seems to rule your life.

The best part about this book is the accessibility. If you are recently diagnosed, there will be things in here that make no sense - yet. But the information that you can take away even at the start will help you in your diabetic management. Once you've got a few months or a year under your belt, go back for a re-read. That stuff that didn't make sense is all of a sudden applicable to your life.

I read this at least once a year. I'm about due for a re-read.

---

 Sugar Surfing by Stephen W. Ponder

I'm going to preface this by saying two things:
1. This book relies heavily on the use of a Continuous Glucose Monitor or Flash Glucose Monitor.
2. It's a bit repetitive.

Even with those two things, I suggest it. Why? A lot of times, when we PWD are given or self-fund a CGM, we're excited! More information! Data points! Fewer finger pricks! All of these are good things... But what happens when you look at that data and think 'okay, now what?'

This book helps you with the 'now what' question. What is it that your Dexcom or Medtronic or Libre is telling you? How do you put that data to practical use?

We're told 'pre-bolus, except when eating out because sometimes food takes a long time to come to the table or it's more than you expected, or...' But then comes the questions... How far in advance? Do I pre-bolus differently for different foods? What about my carb ratios?

Like so much in the life of a PWD, there's not a one-size-fits-all answer. (Aside from take your insulin and carry hypo treatments. Those two are always.) What Sugar Surfing does is give you more tools for your T1D toolkit on how to utilise that data to best manage your T1D.

---

Diabetes and Wellbeing by Jen Nash

This is not a 'read it and you're cured!' book. And if any book dealing with T1D and the emotional strain therein tells you that it's going to, save your money.

This book is based off of CBT (Cognitive Behavioural Therapy) techniques in order for you to enlarge your toolbox (I use this term a lot. I was in therapy. It works for me.) in order to cope and engage in the self-care that is necessary when dealing with the wearing nature of a chronic condition.

One of the things that CBT covers is 'mindfulness'. It's a way of checking in with yourself and figuring out what it is that you can do things about. And then moving into action and resolution if possible.

We all know those relentlessly positive PWD. They've got it all dialed in, a perfect A1C, and nothing causes a blip. Or so they tell us on social media. And for some people, that's what it is. For the vast majority of PWD, there are more ups and downs than an overcorrected hypo. Having the tools to cope with the stressors that go hand in hand with this condition is helpful and can prevent or delay burnout.

---

If you only have the time/money/inclination to buy one, get Think Like a Pancreas.

Do you have any 'must have' books associated with T1D? Let me know in the comments!

Yet Another Origin Story

I figure I should introduce myself.

I'm Ryn, and I'm a person with diabetes.

I was diagnosed in January of 2016 after being admitted to A&E with diabetic ketoacidosis. Well, I was unofficially diagnosed during triage when the nurse said 'How long have you been out of control with your diabetes?'

'I'm sorry, my what?'

'YOUR DIABETES.'

'Yes, ma'am, I heard you, but I'm not diabetic.'

'No, you definitely are. Okay, go sit out in the waiting area until someone calls you.'

I was so exhausted that I couldn't even process what was going on. My husband was waiting out there and I remember saying to him 'I think things are about to change.'

I had NO idea.

I had been diagnosed with PCOS (Poly-cystic ovarian syndrome) a few years before and it was pretty well documented that it tends to be co-morbid with Type 2 Diabetes. So, I figured that was what happened. I ran the clock down on my non-T2D life and I was just going to have to get used to the stomach upset of Metformin and cut back on the occasional cake and chips.

Once I was admitted into A&E, there was a lot of blood drawn, more IV connectors than I expected (my forearms felt like squids with their little IV related tentacles) and people were busting ass. The doctors, the nurses... Hell, even the orderlies.

I remember posting this to Facebook once I had a connection (my mother freaked out):

"This was my Thursday."

And I still didn't quite understand what was going on. I mean, sure, T2D comes with the possibility of complications, but I'd only been tired, occasionally short of breath, drinking carbonated water because my mouth hurt, and pissing like a racehorse, but surely I'd be sorted and out in a day, maybe two, tops.

The doctor came up to me and said 'Okay, so you have diabetes.' I looked at him and said, 'yeah, the triage nurse kinda stole your thunder on that one, doc.'

'You have type 1 diabetes.'

'No, that's diagnosed in kids. I'm not a kid. I've aged out of that one.'

'I have bad news for you, then. There's no age limit on type 1. You're in diabetic ketoacidosis. Your blood has turned acidic. Your body is unable to clear the ketones being produced.'

'Surely that happens in people with type 2?'

'Not unless they've had a physical trauma to their pancreas. Have you been in a car accident or any sort of severe accident lately?'

'No.'

'Yer a diabetic, Harry!'

It was at this point I decided I liked this doctor and I wanted to keep him in my pocket.

And all of a sudden, I was a hospital celebrity! Student doctors were coming around to see me! They wanted to feel up my liver! I was asked questions about drug use and personal history and who else in my family had T1D (no one, I'm super special)...

The only thing I remember asking was 'So, will I be out by tomorrow? I have tickets to see Cirque.'

Spoiler: I was not out by tomorrow.

The next three days were spent being hooked up to everything but a ventilator and a catheter. Every drop in and out was measured. I had insulin going in one arm, glucose going in the other, a blood pressure cuff that woke me up every 15 minutes and heart monitors that were stickier than a toddler's fingers.

Five days, all told. And on the last day, I got 30 minutes with a diabetic specialist nurse, a goody bag of insulin and needles and a blood glucose monitor, a few pamphlets, and sent home.

I had no idea how much everything would change. How it was possible to be grateful to be alive and so angry at my body failing me. And how much I would have to learn on my own.

I also couldn't imagine being able to cope with this if it weren't for the amazing online community of people with diabetes.

So what's this blog going to be about? I'm not sure yet. Is there room for another T1D blog? Maybe. Why am I doing it?

Because the one thing I have found most important since my diagnosis is knowing that I am not alone.

And neither are you.