It’s Diabetes Awareness Week!
I ALMOST wrote ‘Happy Diabetes Awareness Week’ but then I realised just how insane that sounded. There is nothing ‘happy’ about having diabetes OR your child being diabetic. Ask any Diabetic. I’m not saying they aren’t happy because I am sure they are but if you asked them to describe what it feels like being Diabetic, I can pretty much guarantee that the word ‘happy’ isn’t one of the top 10 words to come out of their mouth. If I was to ask Carter that question I’m sure it would go something like ‘it’s not so bad, but I wish I wasn’t, I wish I didn’t have to take injections and check my blood sugars all the time and I could just play instead’… Pretty sure that would be his response.. He’s not sad, stressed or depressed about it but of course, he would rather not have it…
He’s definitely not HAPPY about being Diabetic – but he is HAPPY!
Still, it’s a week dedicated to Type 1 and Type 2 Diabetics. To identify the difference (vast difference) between the two and to recognise THEM – as PEOPLE! And to show our support for them and help spread awareness of their disease, their daily struggles and generate some empathy for them – we owe them that! We still live in a very naïve society, completely ignorant to what daily life actually looks like for a Diabetic.
ALSO, this week is a great opportunity to help raise awareness and SPREAD IT LIKE WILDFIRE – about the signs and symptoms for diabetes and to STOP any more children suffering and succumbing to undiagnosed Type1 Diabetes and the Dreaded Killer – DKA!
Do you know the signs? The T’s? Thinner? Toilet? Thirsty? Tired? If your child shows any of these symptoms PLEASE insist they are checked for Diabetes and DO NOT settle for a simple urine / ketone sample – you want a finger prick – one small drop of blood and it could save their lives!
There are other symptoms to be aware of too. Any signs, concerns or if you just don’t feel right you MUST get checked.. You can’t hide from or ignore diabetes.. It has no mercy!
So what’s daily life like for a Type 1 Diabetic? I’ll tell you.. For my 9 year old (and me AKA – mumcreas, human-pancreas, carters pancreas or just plain old mum), we try to lead a safe, simple, quiet life full of fun. Free from drama and trouble. We don’t put ourselves into other people’s business and don’t welcome trouble into ours. We are happy and polite and we are just grateful for our lives – we live accordingly..
A typical day for us:
My alarm goes off at 6.30 AM, I check Carters blood sugars as he’s sleeping, he can sleep for another hour yet but I have to be up and around for my older boy and prepare breakfast. Carters blood sugars are usually around 4.8 at this point, if he’s above 5.3 I will administer a small amount of insulin to see him through for his breakfast as I know he will continue to rise at that time of day as the Dawn Phenomenon kicks in..
Dr Bernstein talks about Dawn Phenomenon here: https://www.youtube.com/watch?v=Ys6TAqByjF0
We usually make breakfast of Bacon, Eggs, Cabbage or Spinach. Sometimes homemade cereal, sometimes Pancakes / Waffles with sugar free ice-cream and chocolate sauce. Sometimes we have a small amount of berries too. We eat these foods because have learnt from experience that we can predict what impact they will have on Carters blood sugars and therefore know exactly how much insulin he needs and how they will both behave in his system. They are nutritional, low carb, sugar free and will satiate us. This is good..
7.30am Carter will get up, washed, dressed and check his Blood Sugars for Breakfast, he takes insulin accordingly. Very small amounts – 1-1.5units, never more than 2units at a time, mostly 1unit. Any more than 2 units is too much for the Dexcom to keep up with AND would be far too much for a meal that we eat. He doesn’t eat carbs <5g carbs for breakfast and protein is metabolised much slower and delayed compared to the profile of his pungent fast acting insulin, so the small amount, just to cover the food at that point is enough. He drinks 2 glasses of water and sometimes he will have a coffee with cream..
8.30 He will play / school depending on what day it is..
10am Carter will check his Blood Sugars and watch the trend on his Dexcom anticipating the protein spike from his food, he will take a small amount of insulin to catch this rise in his blood glucose levels as the protein is metabolised and digested. He drinks water.
Usually his blood sugars do not go above 5.5mmol in a morning, if he has High Impact Activities he may experience an adrenaline spike (I talk about how I manage this for him in my Transparency Blog), OR if he misses his protein spike he will have to catch it and may go higher but usually (as his baseline insulin is dialled in) he will remain stable and steady – safe; so that he can get on with learning and playing and being a 9 year old boy..
12pm, Carter will check his blood sugars for lunch. I usually make some sort of salad for lunch: spinach, lettuce, cucumbers, tomatoes, peppers, radishes, onions, celery, cress etc.. We sometimes have lettuce wraps. Mostly we have cold cuts of meat or left-overs from the night before.. Cheeses, HotDogs, Salami or prawns, sometimes Soup or Pizza – all good nutritional lunches.
Carter takes a small amount of insulin to cover his food <10g carbs and drinks 2 glasses of water.
In the afternoons if he’s not schooling he will play outside or go to one of his sports activities: football, basketball, parkour, trampolining, swimming, street dance or play in his pool if the weather is nice. His Dexcom is always with him to catch any hypoglycemic episodes if he doesn’t himself. If he does hypo he will check his blood sugars and take the adequate amount of glucose – we watch his Dexcom for an increase in his trends and sometimes reconfirm with a finger prick if it doesn’t seem right – we never administer glucose or insulin off the Dexcom, always confirm with blood! The Dexcom is an incredible tool but it can be wildly out – administering insulin for a false high when Carter’s blood sugars are actually ok/low could be fatal!
We don’t snack during the day, I feed my kids enough at meal times that they don’t need to graze or trough. If they’re really hungry or they are with friends socially who are eating then they may have a small snack with 0 carbs but they don’t usually ask and aren’t hungry. Sometimes Carter will have sugar free lollies or ice-pops in an afternoon or a glass of diet pop. No impact to blood sugars – no worries.
16.30 I will start preparing dinner: our high protein meal,. We usually have steaks or chicken or lamb or minced beef with vegetables or if it’s hot we will have salad. We have a fabulous variety of meals but we also have staples that are in weekly rotation, it’s easier and predictable that way and we all enjoy the food so there’s no reason to change things for the sake of food being fun. Food is not fun, it is fuel. Mealtime is fun, we chat and we play games round the table or we watch gameshows together (the crystal maze and robot wars are our favourite, sometimes re-runs of ninja warrior play and that’s pretty cool to watch. We are also partial to a good episode of You’ve Been Framed – much giggling).. Mealtime is fun, the family-time is fun but food is not fun, it’s fuel. Changing our mind-set like this has really improved our lives..
Carter again checks his blood sugars and takes a small amount of insulin for his meal, he also takes his long lasting insulin (Levemir) at that point too (5pm) and we can tweak it dependant on the content of his meal – this will help him through the night with high protein/fats as it is digested. Levemir usually peaks in his system around 5-7hours and is gone by 8-10hours. The insulin is supposed to (and the Dr’s say) it will last 24 hours but it doesn’t. We find no evidence of it in Carters system after 12 hours, although when tweaking doses, it can take upto 2 days to really notice a difference. It is just how the compound works in the body. We have to split the doses to maintain a nice safe level of insulin trickling through his system. Too much would see him consistently low and too little would mean he is too high. It’s finding the safe, steady baseline that is key to good blood glucose control. Levemir mimics the pancreas and the Liver and doesn’t cover food. It’s the synthetic hormone that subsidises the insulin you and I would make normally to maintain glycogenic homeostasis – this doesn’t happen with a Diabetic, so, they take a long lasting insulin so they always have something in their system. Not having any insulin on board is life threatening, having too much is equally as dangerous – it’s a fine balance.
Occasionally I will have baked something for dessert or the boys will have cookies or sugar free jelly and ice cream. Not all the time, but sometimes. We enjoy baking and I enjoy them having treats every so often.
I have an upcoming blog post that is focused on all the foods that we eat: How we shop, source our foods, plan our meals according to daily activities, work out what is best to feed Carter based on his blood glucose control and exercise and how / what we bake and what we have learnt along our journey so far..
Our evenings are filled with (decorating at the minute urgh) homework, afterschool activities, family time, reading, gaming, ipads, movies, crafts, baking and snuggles on the sofa.. I like our evenings.. Sometimes the boys will be out with their friends but mostly we are together – it’s good.
7pm Carter checks his blood sugars and will administer a small amount of insulin that I have pre-drawn for him; anticipating his protein metabolising. His blood sugars will rise pretty quickly on an evening if we don’t catch it and have the insulin inside him working as it hits (30 mins from injecting the insulin for it to work). The evenings are the hardest to control blood sugars as unless he has something planned, he’s pretty inactive and will spend time indoors reading or on the xbox, or playing with me or his dad or brother. On days when he goes swimming or plays out, he doesn’t require as much insulin – it’s a continuously reactive process.
8pm is bath time, we check his Dexcom sensor is secure and I will re-secure it for him if not. He washes and checks his feet and in-between his toes. I usually help him dry (because he’s crap at it) or if he’s in ‘piss mummy off mode’ and a royal pain in my ass, I make him stand and shake like a puppydog – both hilarious and a great way for him to throw off some energy 🙂 … I check his nails and massage oils into his feet, legs, arms and his injection sites. We also use healing oils on his fingertips – they take a beating.
Carter will drink some water and check his blood sugars before bed, he usually takes his supplements at this time too and some nights we will check ketones – just because. We cuddle and we chat and he can talk about anything and everything – we do this separately and randomly at any time of the day but usually at night, he always has something to say (and it means he gets to stay up later).
The result of his finger prick determines if he will take a small amount of insulin before bed or not: Anything over 5.5mmol he will take ½ unit, usually he is around 4.6mmol for bedtime so that’s fine. If he is below 4.0mmol, we will give him a small amount of glucose or some protein (ham or salami) or a small protein shake with cream. Just a little something to keep him steady through the night. Him being lower to go to bed means I overshot the corrective insulin for the protein earlier in the evening – or he was more active than expected – or the weight of the protein wasn’t quite right v’s the amount of insulin we gave. It could be many things, the point is, and we raise him slightly to 4.6mmol for bed.
Sleep for my boy 🙂 Zzzzz
At 11pm I will go and finger prick Carter to check he’s not dropping / rising and is ok as he sleeps. The Dexcom will alarm me if he isn’t but I always check myself too. Sometimes if he rolls over onto his sensor the Dexcom gets all confused and will throw out a ‘pressure low’.. It sits in interstitial tissue remember (not blood) so it can be confused if that tissue is compromised (cold, squashed, warm, dehydrated etc). Sometimes it thinks he’s low but he’s not, it’s just that it’s squashed and so it sings us its ‘pressure low symphony’ and sends me running in a mass panic to Carter’s bedside (fun)!
1.30am I will finger prick Carter again: if he’s ok at this point I know I can get some sleep. On the nights when I am working; I will either already have been asleep and have set alarms to wake me or Greg will check Carter too. I also administer some Levemir (long lasting insulin) at 1.30am, this prevents Dawn Phenomenon from sending his blood sugars too high from 5am onwards. I judge how much to give him depending on what his blood sugars are and what food we ate that day. Usually it’s around 1-2 units. If he’s had great control for a good length of time, he will drop this shot completely and doesn’t need the extra insulin because his own pancreas generates some..
Sometimes though, he can be as high as 5.3mmol by 1.30am so I know he needs the Levemir to cover his protein and fat as it metabolises, sometimes he’s lower and so I just give him a small amount to see him through until morning. Levemir takes around 5-6hours to peak so I like the 1.30am shot; I can manipulate it for him based on his needs and we get good results from that. Also, it works well because I always check him at that time and have peace of mind that I can still sleep afterwards..
The Dexcom is on, set, calibrated and it’s ok. I trust Dr Bernstein’s system and Evidence Base suggests that my boy should be ok and safe as I sleep. He doesn’t have enough insulin inside him to drop too low or too fast. He hasn’t taken any fast acting insulin since 7-8pm the effects will have gone by now. I can sleep! So I do.. And I trust the system (it’s taken a long, LONG time for me to do that). It’s ok.
The Dexcom alarms most nights, pressure lows or lost connections and we get up, sometimes Carter will have a bad dream and his blood sugars go up, occasionally his pancreas kicks out some insulin of its own (god bless the honeymoon) and he will drop low. It’s all reactive – we react accordingly. If the Dex goes off – it’s definitely enough to wake me and send me legging it across the landing in a flash.. If the Dex doesn’t go off I know I have the alarms set on my phone to wake me when needed.. We do what we need to do for him, and then we go back to bed.
Dr Bernstein talks about the honeymoon period in his book and his YouTube diabetes university tutorials. It’s important to understand the Honeymoon Period, to cherish and nurture it. NOT to see it as a pain and to long for it to be over. Type 1 Diabetics can prolong and re-establish the Honeymoon Period and they are safer because of it. I am aiming to prolong Carter’s Honeymoon Period forever..
If Carters blood sugars are high then it’s different: we don’t sleep – he is more important! These are the nights where Diabetes is harder (it’s never easy but sometimes it’s easier – butsometimes its harder)..
If he’s high and we administer insulin; he goes onto 1 hourly finger pricks. The insulin takes 30mins to take effect in his system and is usually gone by 1hr, so we check him hourly. If in an hour he’s still higher, he will have more insulin and be checked again in 1hr. When he’s back in range I set an alarm for 1hr and then if he’s ok I set one for 2hrs and then if he’s still ok I can sleep and trust the Dex and trust the system that he is and will be ok.
If Carters blood sugars are low then (again, we don’t sleep) we will administer liquid glucose; the exact amount he needs to correct his blood sugars to 4.6mmol. I give it through an oral syringe as he sleeps and he takes it like a baby bird – no worries. I then flush him with 50ml water to help the glucose into his system. I wait 15 minutes and finger prick him again to check the glucose has had effect. If it hasn’t I will administer more glucose and repeat the process. Sometimes if I have administered 2Xsets of glucose I will wake Carter and make him get up and walk around to help his system wake up so that the glucose isn’t sat in a sleeping tummy. This can cause a glucose dump and his blood sugars will go higher than expected, but it’s ok. They never go ridiculously high (always <6mmol) because we don’t give incredible amounts of glucose, we give specific amounts, because that is something I can control, I can’t control his body hanging on to it and dumping it, so giving specific amounts is a preventative measure I learnt from Dr Bernstein, so I know if this happens the repercussions (high blood sugars) aren’t too high and are still OK.
Also, I know exactly how much 1g glucose will raise Carters blood sugars by (I talk about how I worked this out as per Dr Bernsteins Book in both my HYPO blog and Overnight Basal Testing) and if I’m not fighting against fast acting, active insulin then I can rely on that process and ‘trust the system’.
So, he’s back in range, I set my alarm for 30mins and go back to bed, if he’s OK in 30 mins I set my alarm for 1hr and go back to bed. If he’s ok in 1hr then I know I can sleep then and go back to trusting the Dex and trusting the system and trusting that Carter will wake himself if he drops too low..
It’s hard and it’s scary; trusting something that could go wrong so quickly when his life is on the line – a missed hypo could cost him his life in seconds. High blood sugars will pickle his organs.. It’s hard.. BUT, I do everything possible and all preventative measures are in place to keep him safe and alive as he sleeps – so I can sleep.
Usually its ok, it’s never easy but it’s ok.
OK, it’s hard to sleep and to fall to sleep, especially when you have alarms set for 30mins/1hr or are up in 2hrs for work. Some nights I just lay there most of the night, small 5min cat naps here and there, other nights I drop straight off and only wake to our alarms. I must be a super light sleeper because I haven’t missed one yet (thank goodness), so I am confident in the system because I can wake. If I ever missed one, I think it would throw me and I’d have to work out a better way.. Can’t miss an alarm – there are lives at stake!!
If anyone is interested, I talk a lot more about how I manage hypo’s in a separate blog post here
So, we’re right back to 6.30am again. I will check Carter’s blood sugars. I’m mostly looking for a rise in blood glucose levels at this time (and as he’s type 1 diabetic – I’m praying he’s ok and made it through another night – the fear is real, it’s always there – never leaves you).
This is how we live now!
It’s an important finger prick this one: did I give enough Levemir at 1.30am? If not, I can give a small corrective shot to counteract his small rise from Dawn Phenomenon. If ok and in range I let him sleep..
I’m up, he’s sleeping..
On the day’s I’m working I leave at 6am so Greg will take over management. On a weekend I will go back to bed and my older boy will play with Carter and sometimes make breakfast. Sometimes we are all up anyway, it depends. We have no rules, except the Insulin and Blood Sugar testing clock and those are dialled in tight, we all have iPhones with alarms set and if one of us misses it; the other will catch it.
We document everything in a notebook in his diabetes kit and the risk for error is as minimal as we can get it. A lot of work and ‘what if’s’ went in to making it so and it’s a fool proof method that we can all work from.. I can look in his book and identify if/when he had insulin and how much at what time. If Greg does something or I am out I can pick right up where I left off and vice-versa.. So far so good. It has to be this way, it is important. Insulin is both an incredible and dangerous drug.
Life isn’t easy with Diabetes, it’s stringent, strict and structured. But it is made easier by being that way. If we didn’t follow a routine and Carter ate at random times, his blood glucose levels would become unpredictable and it would be harder and unhealthier for him. So, we stick to a regime that works for us. Yes there are days when things don’t go to plan. Yes some days we eat later or earlier or something crops up. But mostly, we stick to the timetable that we have worked out for ourselves, because it’s the best thing for all of us, especially Carter and his Diabetes Management.
I can trust the system because (with Dr Bernstein’s guidance and the solution methods in his book), I created the system based on our own evidence base and experience,. We adhere to the system because it works for us. We nurture it and respect it and it does us well.
Life with Diabetes isn’t easy but it’s ok and we are OK.
My boy is healthy and thriving.. He’s growing (he’s 9 now and he’s 5ft tall!). He’s strong, kind, caring, so incredibly brave and very smart. He’s funny and silly and annoying, yet he’s so happy and positive and so damn inspirational that he makes me overwhelmingly proud of him – every single day!
I am happy to be his pancreas (although I wish he didn’t need me to be). I am his biggest fan and I will care for him for as long as he needs me to – and then some. I lead him by example so that one-day, when he’s old enough, mature enough and ready – he will take the wheel and be his own driver. I would like to think that when that day comes, I will have empowered him with enough knowledge, solution and the confidence to continue his own care seamlessly where I left off in a body that shows no impact of the disease and deficit Diabetes can do!
Diabetes is OK. It’s not HAPPY, but it’s OK. Life is HAPPY and that’s good enough.
I believe that life with Diabetes is what you make it. It has to work for you. Following Dr Bernstein’s Diabetes Solutions Methods gave us our life back. Before we found Bernstein my boy was on a rollercoaster of blood sugar hell. We ate anything and everything because that’s what we were advised (that’s the DOH recommendations for all UK Type 1 Diabetics). Luckily we found another way and that made us both relieved and frustrated. Relieved to step off the roller-coaster of hell and take our lives back – securing health and longevity for my boy BUT frustrated because we were never told there was another way – we didn’t know – no one ever tells you.. We are lucky to have found it!
As parent to Type 1 Diabetic who found a better way and feels the elation and gratitude and relief that I do. I see the health and life in my son in comparison to what he was when he was eating the recommended meal plan, I feel a sense of duty to share what we have learnt with people who haven’t yet found out. So does Carter; he feels an obligation, to share what we know and to help more people who are struggling like we did: fighting the ride, frightened and unhealthy..
We want to share, to show them that there is another way and better days are ahead.
Diabetes isn’t easy but it’s easier on Dr Bernstein’s Team!
We made a video to share, please share it with your friends and family and any Type 1 Diabetics you may know. They don’t know what they don’t know – until they know!
You can help them, we can help them.. Let’s help them!
Diabetes Awareness Week is about sharing and helping and supporting.. Let’s do this – for them!
Carters Video: https://www.youtube.com/watch?v=SJyNuu9Im9s
It’s Diabetes Awareness Week – Raise Awareness!