I am in my bed. A simple pleasure that rarely presents itself before midnight and beyond 7:30am, frequently being interrupted with middle-of-the-night journey's into the boys room for all sorts of reasons, most of which are diabetes-related. I just perused some of my old blogs and musings, 2011 was indeed a good year, and my adorable bundle of joy is now almost 4 years old! Wait, what!?!? How did we get here!?!?! Oh right, 4 years have passed.
Life has changed considerably. I have put my career on pause and now have the joy of spending my days looking after my (almost age 4, and 18 month old) boys! I had been working part-time and was running a project at a homeless charity, a place I quickly came to love and still miss. However last year life threw us a curve ball (I think I need a less sporty analogy here, having never actually experienced the throw of a curve ball...!) in the shape of Type 1 Diabetes. Our oldest son was diagnosed just before his 3rd birthday and I have spent the past 11 months attempting to become as close to an expert as I can possibly be!
Type 1 diabetes is hard work. The pancreas basically stops working and when symptoms present themselves it has already lost 90% functionality. The remaining 10% function will eventually stop too, but at some unknown, unmeasurable time. The pancreas is a vital organ that produces insulin. Insulin basically acts a like a key and unlocks the door allowing sugars to move from blood stream and be converted into the muscles for energy. Without insulin the body cannot convert sugars into energy, the blood glucose levels can reach alarming heights and without immediate medical intervention can actually result in extreme illness, with life-threatening consequences.
We were incredibly fortunate and recognised the symptoms fairly early on, so after a few days in hospital and an intense crash-course in injecting insulin, counting carbohydrates and learning about the basics in managing type 1 diabetes we were home. Back to our home that we had left in a whirlwind only a few days before, but now with an entirely different perspective on life and wondering how to best manage this complex, fragile medical condition in our wee 2 year old.
The overwhelming feeling I currently live with is responsibility. Sure, creating 2 brand new humans, looking after them, teaching them about life, etc is massively responsible but it never felt that way. It still doesn't. It comes naturally and is mainly a lot of fun! Looking after and managing type 1 diabetes though, is entirely different. My job now is to learn as much as I possibly can, so that I can manage his diabetes in the best possible way until he is old enough to learn how to do it himself...and even then I don't imagine I'll just leave him to it!!
It is an intense, daily regime of insulin delivering, blood glucose testing, ketone monitoring, carbohydrate counting, cannula injecting, and so much more. It is knowing how to respond to unpredictable blood glucose levels, treating hypo's (when blood glucose is below 4), re-testing, stabilising. It is correcting with more insulin when his blood glucose is too high. Testing for ketones if he is above 14. Ketones can make him really ill and are basically bad and to be avoided and gotten rid of ASAP!
It is adjusting insulin basal (background insulin basically on a permanent drip, given through his insulin pump) rates, which are all on different hourly rates depending on his requirements at each hour of the day and night. It is adjusting his insulin: carbohydrate ratios to make sure he then gets the correct amount of insulin for each meal and snack time. It is learning how to adjust and tweak these every day if his blood glucose then goes too low or too high.
It is managing the effects of a million and one variables that affect the body's blood glucose levels nd absorption rates. The weather- too hot or too cold. Any type of illness, cold, coughs, tummy bugs, a temperature, all have an impact. If he exercises or runs about. Feeling excited, or anxious, or anything where his adrenaline is pumping. It is looking for patterns and trends in his levels, uploading data from his pump to the hospital once or twice a week and reviewing the graphs and tables of invaluable information.
It is dealing with the emotional impact of how diabetes makes you feel. And I'm talking physically, not even the psychological effect of having the condition. Too much glucose in the blood pretty much guarantees emotions running high alongside. Crying, tantrums, shouting and aggressive behaviour. Too little glucose in the blood often leads to feeling exhausted, lethargic, teary, needing cuddles and going as white as a sheet. Once we have experienced loss of consciousness, eyes rolling back into the head, floppy as a ragdoll, until the emergency glucoboost treatment kicked in and brought him round. It was one of the scariest moments I have had.
We recently received amazing news, that he would be given a funded CGM (Continuous Glucose Monitor), which basically monitors his glucose levels every 5 mins and sends the data to his pump where it can also be viewed as a graph. I'll probably blog more on this another time as it's a whole new realm of clever medical technology that we are incredibly lucky to be benefitting from.
Type 1 diabetes is often misunderstood. It is often underestimated. It is exhausting and relentless and today I feel shattered and a bit like someone's punched me in the stomach. And it's not even me that is living with it.
I think my emotional morning was actually triggered last night by him making sure he took his testing kit to bed with him, just incase he was low during the night and so I could give him his jelly babies and check he was ok. It was so sweet and broke my heart a wee bit!
But our boy is an absolute star! He has just arrived home from the shops munching said jelly babies as he just had a hypo. He is delighted with his new puzzle and we are going to spend the next few hours making it and playing in the garden. Life with type 1 has become the norm and he takes it all in his stride. It's not without it's challenges, far from it, but my cheery wee guy is my proper hero. And he has absolutely no idea what that really means!
Our boy is an absolute star.
