When things go wrong..

What happens when things don’t go to plan? What’s it like when things go wrong? What does it actually mean? What causes it?.. How do you fix it? And WHY?!!

I freely share details about Carter’s Type1 Diabetes. I am open and honest about how we manage it and the results he achieves. I do this to both spread awareness (for him and all the other Type 1’s) and to help people who are struggling to see that there is a better way, an easier way – a safer way; and it’s easier than you think!

I spend my life dedicated to his great control and good numbers. Sharing his flat lines as inspiration to others and as proof that it can be achieved if you adopt Dr Bernstein’s methods and commit to your health.

Yet, because I share so many amazing flat lines from his Dexcom, people find it hard to believe that Diabetes really does take all of my time 24/7. It is a full time job I assure you. And that’s when it’s easy.. When things go wrong or not to according to plan, it’s worse – much worse!

Let me explain:

On his Birthday, I sent Carter into a hypo by administering too much insulin for his Cake. Not your typical chocolate cake of around 80g carbs, Carters was 6g carbs per slice, AND slow carbs (this means they won’t spike his blood sugars, instead it would rise slower and at a less ‘steep’ incline), also not as easy as I thought to bolus for (still 100% better than the sugar loaded alternative though).

To someone not in the know, they’d think ‘ok a hypo, fix it and move on’.. As a T1 Momma, I know that ‘moving on’ from a hypo is a LOT more than that! Not only does it take Carter time to recover physically and mentally (hypo’s are serious, emergent medical situations), but physiologically, it screws with his bodies’ balance for days, throwing him out of ketosis, increasing his insulin requirements and making him much more sensitive to carbs. It is a logistical nightmare!

His finely tuned, well-oiled machine becomes creaky and stalled and all kinds of wonky in situations like this.. It’s dreadful…

So, we had a crap hypo. I’d bolused for the cake, but his gut was busy digesting his dinner (meat and veg), so the insulin was working and the glucose was slower to release – bad hypo! By the time the glucose had absorbed, his insulin was almost fully metabolised and therefore he had a huge spike in blood sugar levels. I spent ALL night trying to coax him back into range, fighting insulin resistance & high blood sugars dancing on the line between administering insulin to treat the high v’s treating too aggressively so not to drop him through the floor and end up on a blood sugar rollercoaster (NOT EASY)!.

He had 4 full units of fast acting insulin ‘Novarapid’ (normally only has 5 in 24hrs), and I gave him an extra 4 units of his long lasting yet he was still high this morning!

In reality, what I’d actually done by causing the blood glucose spike, is highlight his precious functioning beta cells (in his pancreas – the cells that produce insulin) to his immune system for them to commence their auto-immune attack. You see, when the beta cells have too much glucose they become identifiable to the immune system and T1 Diabetes is ultimately an auto-immune attack on the beta cells. So what I’d done (and the reason I felt so guilty), was line them up for it to shoot! And then Carter is regressively high for a time afterwards, losing his predictable control and remaining beta cell function. Hence: insulin resistance and stubborn hyperglycaemia.

Now you see why it’s no small issue to ‘just be high’ or to ‘treat the hypo and move on’ AND why I felt so guilty.

So, we battled the highs and he had more insulin to compensate. The aim is to keep him lower, let the beta cells recover and re-hide (camouflage if you like), from the immune system so they can start kicking out minute spurts of insulin again (this is more commonly termed as ‘the honeymoon phase’ in its basic form)…

Well, we seemed to regain a bit of control as the next day went on, Carter even had a small hypo at dinner time that evening, he asked if just this once he could have some of his birthday chocolate (remember, I only ever buy him suitable foods anyway), instead of a glucose tab.

Now, I never EVER treat a hypo with anything other than glucose. Dr Bernstein is very strict about this and his methodology is sound:

Carbs take time to digest and during a hypoglycaemic episode, the body needs quick release, raw glucose. So, I use liquid at night as its fast and doesn’t require any effort other than swallowing and we use chewable dextrose tabs in the day when he’s ok and can chew them. He is extremely compliant, he knows that is his treatment plan and has never questioned it or complained, he actually quite likes his dextrose tabs (orange and green are his favourite) so we never have any issues.. Also, even before Dr B, it’s ever been any different – we always did this..

But, I said this one time it would be ok (I don’t even know why I said it, a brief blip in concentration, trying to be nice? I’m not sure, but I did).. PLUS he wasn’t technically hypo so it would be ok and more than enough. He certainly wouldn’t spike off it..

Well! He did!

He rose so quickly his Dexcom died a death and ran away screaming! By the time I realised his Dex couldn’t keep up, I finger pricked him and his blood sugar was 10.00mmol/L !!!!!

Absolutely scared the life out of me!!!

I quickly retested him, hoping it was an error / dirty finger etc. Nope! 9.8mmol/L.. Now you have to remember, these numbers are foreign to us, we NEVER see readings above 6mmol!! And we haven’t seen a reading like that for well over 6 months! It was a HUGE shock to the system and extremely unwelcomed!

I quickly administered 2 units of fast acting insulin and gave Carter a crap ton of water to drink. We watched the Dex and it just did not want to drop. An hour later and he was still 8.2mmol! He had a further 2 units! USUALLY, 2 units is more than he would take with a meal, 4 units is as much as he takes in 24hours! But, because I’d lit up those beta cells, literally lit them up like a lightbulb, shining the spotlights directly on them; the autoimmune system has recommenced its attack and gone on a rampage inside him to hunt them down.

We were fighting insulin resistance with him being so high, with no help from those precious little camouflaged (no more) beta cells – they were under siege at this point, no way could they kick out any insulin to help! That was my job!

Another 2 units! More water!

Eventually after what seemed like a lifetime, he started to drop AND THEN he started to drop – fast! I finger pricked him every 10 minutes and when he hit 4.2mmol & still dropping I gave him 4g dextrose. He held it fine (nice timing momma) and has been fine all evening.

However, at bedtime I realised; now he has more long lasting insulin in his system (from the night before), so could potentially hypo as he slept. So he had some cold cuts of meat and no insulin at bedtime. Normally that would take him up to 5.5-5.6mmol which should be ok (the slow protein and fat would hold him steady).. BUT nope,

That night? Nope! I seriously messed his system up! It took him up to 7.2mmol! Just to let me know, it’s in anger!! Thanks then! Message received! Loud and clear!!!

So, he was higher, his baseline ‘should’ coax him back into range nice and slowly. I could have given him 1/2 unit of fast acting insulin but I have to draw a line somewhere and stop playing ping pong with his blood sugars v’s pancreas function v’s insulin administered and he was sleeping – you don’t play games at bedtime – ever! There’s no way I can risk any issues as he sleeps. So it’s stops. I step back and I watch, as hard as it is to be less reactive, I have to, to let things rebalance – for him!

So, I stay awake as he sleeps to check he’s safe, same as I was awake all the night before too as he was high and the same as I will stay awake for a week if I need to.

Because: this is how we live now, and he’s alive and things could be very different. I will never complain!! As I type this my eyes are closing, I haven’t slept tonight either – he’s been ok but I have that much to do, I need to take my time where I can and sleep is way down my list of priorities right now – it’s frustrating. I am surviving on 4hrs every 48hrs or so – not sustainable. But for now, it will have to do.

I wish things were different, but they’re not and I’ll never complain about my boy being alive and safe.

I caused the problem!! A simple error in judgement with his insulin >24hrs prior had a complete domino effect; with my boy being at the centre of the suffering! The least I can do is make sure that I fix it as seamlessly as I can and as quickly as I can – for him!

And, if he ever asks for anything other than glucose again (which I doubt he will, he is and always has been – super compliant and sensible), to treat a low. I’ll know, it’s never worth it!

Oh, and Tesco chocolate buttons (CHOCOLOGIC), recommended for diabetics are NOT SUITABLE for Diabetics! Stick to Pundits! Those 5g carbs in reality are 55g carbs! Sugar is suitable for diabetics in NO SITUATION – EVER!!! Glucose yes, Sugar – never!!! Yet another error on my part!!!

Chocologic & Momlogic = NoLogic!

So, when things go wrong, now you see, it’s never as simple as you think, it upsets the entire balance of his well-oiled machine and it’s bloody hard work to get it back!!!

Our lives have been pretty predictable since we adopted Dr Bernstein’s Methods and Management Plan in August last year; his blood sugar control has been impeccable and almost easy. I could at very least apprehend what was happening / going to happen. And right then, at that point, I was right back to sq1.

People have said ‘it happens, don’t be hard on yourself’ but when that’s your job, (he is my responsibility after all) it’s impossible to not feel terrible! I am his pancreas and I failed him and because of that I have a lot of work to do to a) regain his control and b) rebuild his stability. I do feel guilty and I feel justified in my guilt. I am not wallowing in it, I realise my error & my responsibility to step up and be honest, hold my hands up. I screwed up! I need to fix it now!!

I failed him. I thought I was doing the right thing and I wasn’t, I thought it would be ok and it wasn’t. Will I ever do it again? Of course not! Lesson truly learnt!

So, when things go wrong, you see; the repercussions last for aaaages! And the hard work required to rectify it is insane and exhausting, but it’s worth it.

The damage can be irreparable but you live in hope that the flat line will be back quickly.

It’s never a simple hypo or mistake, there’s always a lot more to it…

There’s also, never an excuse to treat a hypo with anything other than glucose, no matter how much good you think you are doing – you are not!

And there’s NEVER any way in the world EVER will my boy ever eat those stupid ‘diabetic suitable’ chocolates that are the devils spawn from Tesco! Do not buy them! Ever!!

So, there you go, that’s what happens when things don’t go to plan – it’s a lot isn’t it?!!!

And here’s his Dexcom reading for those 24hours:

The first and hopefully only time you’ll ever see Carters line have any resemblance to what most standard Type 1’s see daily – not for us!!! It took almost a full week to get Carters blood sugars stable and steady again.

We got there in the end:

Carters Dexcom costs almost £4000 per year to maintain. The sensors are £53 a week and although we can usually make them last longer, recently they have only lasted a week. They just die and are no longer covered by Dexcom.

The whole kit is expensive and requires replacing every 9-12 months and is not funded by the NHS, we were blessed to have the initial kit heavily funded by my friend and her generous business team. We are on our own now!

Off the recommendations of friends I have set up a crowd funding site to help with this financial pressure (although firmly believe the NHS should fund it)

Can you help me to fund this for him? If you can, please click the link: https://www.justgiving.com/crowdfunding/CartersDex

Sparkles, Rose ❤ xx