Laura: I want to be able to sleep through the night without waking test myself or my daughter.

I understand there is only so much that we a fund and NZ misses out on so much but I often hear talk about cancer treatments and a range of conditions which all very very important and equally as important, but please can we highlight the need for CGMs (Continuous Glucose Monitors) and how much of an impact it will make on someone’s overall life, physically and mentally.

You have no idea how life changing a tool like this is for a type 1 diabetic.  Could you imagine being diagnosed at 4 with type 1 diabetes.  Instantly life is never the same.  You suddenly need to be prepared for a lifetime of finger blood pricks with minimum of 6-10 times a day to draw blood to test your glucose levels and then include injecting your medication anywhere from 1 to 10 times a day.  Constantly calculating your meal to medication ratio intake for every single piece of food or drink that goes into your mouth. I'll remind you again, this is for the rest of your entire life.  You then need to make sure before anything you do such as driving, sport, taking a school test, cross country you check your glucose levels as this can impact on how your body functions during such things.  Even a hot day can impact your levels.

Then you get the stigma associated with this life sentence.  With assumptions and that somehow, we caused this to ourselves. 

Then imagine being a parent of a type 1 child.  You have you to manage everything they do and consider all elements when medicating such as, weather, activity level, period cycle, carb intake, emotional state, time of day, medication on board already, correcting bgl levels.  Imagine giving them a meal and appropriate medication for it.  Then they decide they will not eat as kids sometimes do. Just out right refuse.  Then their behaviour changes they start to get very irritable...starting to sweat or shaking and then try get that child to willingly do a finger prick test drawing blood to establish if they are low or are the just being naughty and not eating dinner.  Imagine waking up at 3am and you just pop you head in to check on your child sleeping only to find them slightly sweaty. Is this because they are hot…. Or is this because they are low?  Then you need to wake them up the draw blood again to check glucose levels only to find they are not low…. or you find they are low and have to turn the lights on get them up and eating jellybeans to raise the glucose then follow it up with a slice of bread as you need the carb to maintain the BGL’s through the night.  Then they have to try get back to sleep then get up and go to school.  If we had a CGM I could have that piece of mind when she was sleeping.  I could check her levels without the need to wake.

I will describe what a low can be like from a minor low BGL to a severe and I can’t even count how many times we have been in one of these states, but it’s scary and scary for others around you.  My partner is a saint as he will recognise someone going low before we do ourselves.  Every persona with diabetes is different and can experience any of these symptoms at any level.

Minor - blurry vision, shakes, sweaty palms, dizziness, headache, pale skin.

Moderate -   profusely sweating (looks like you just got out of a shower) irritable, blurry vision, shakes, sweaty palm, headache, vomiting, dizziness, pale skin, fatigue, confusion, hunger, balance issues.

Severe (brain literally is shutting down) – Confusion, profusely sweating (looks like you just got out of a shower) irritable, anger, blurry vision, shakes, sweaty palms, headaches, vomiting, balance issues, fatigue ,unconsciousness, seizure, state of Psychosis or Delirium.

I have literally thought my partner, my mum, all my loved ones who are trying to help treat a severe low are just not them, like they are some sort of spy out to get me.  Afterwards when my glucose levels are normal, I feel like a complete idiot as generally I have lost my mind at them, and I feel just terrible.  9 times out of 10 I have no recollection of what I have said or done too… It’s like you have no control and then it’s just like a big black out period even though for everyone else it’s like it you are behaving like a crazy person.  It’s really upsetting and scary for everyone, but they have learnt to how manage me if I get like this.  You get to this state as your brain is that deprived of glucose it just shuts down and you just lose the plot. Imagine going to sleep (I haven’t slept full 8 hours in years) and wondering is tonight the night I go so low during the night that I just won't wake up again. I worry about this constantly!

I have helped manage this disease for my daughter for 12 years now and it is bloody tough, but you just have to soldier through it.  She is amazing though as it’s such a huge thing to manage from such a young age.

I was also diagnosed with Type 1 at 9.  So, everything my daughter has been through, well so have I.  It’s helped her to know that she’s not alone. It’s been bloody hard managing mine then also my daughters.  It’s a constant worry, constant calculation, constant nag.  There is NO holiday or break from this condition.  It will never disappear or be cured through lifestyle changes.  It is a constant strain on my life.  I did not ask for this disease it attacked my body when I was a young fit healthy 9-year-old.

So, after managing my diabetes for 27 years and my daughter’s please, please, please, talk about the need to fund CGMs.  We are stuck with this disease, and we just want something to help us manage too far more effectively.  I want to be able to sleep through the night without waking to do a test on myself or my daughter.  You have no idea how depressing and down you can get with diabetes.  It changes your life so significantly and until you go through it, I don’t know if people ever will fully understand.  It’s a constant struggle that never goes away, you keep thinking, why me, it’s not fair but just have to keep going though because if you don’t you will endure endless complications from uncontrolled blood glucose or worse case you could die.

So far, I have done on average

• 73,000 finger prick BGL tests

• 64,000 needle injections in my stomach

My daughter has done

• 24,000 finger prick BGL tests

• 28,000 needle injections in stomach

The skin on my fingers is so scarred from the constant testing I have to do

The key part about type 1 diabetes is having to keep you blood glucose well controlled, ideally ranged between 4-7. Ask anyone who has diabetes, this is near on impossible to achieve as there are a number of factors that I’ve mentioned that can impact this.  If it’s easier to monitor it easier to correct and avoid these complications later in life. The current funded BGL meter (Carsens) is just shockingly unreliable.  Results are never consistent and are often inaccurate. I’ve done a test and it say my levels were 25.0 even though my body didn’t feel like it was. I tested on my daughter’s meter, and it came up saying 8.0.  This often happens but imagine if I had given insulin as my levels were high, only to then to have to deal with a severe low because they were never high to begin with – and this does happen a lot.

It’s in the Ministry of Health’s best interest to ensure we have a greater control to avoid more serious complications later on that will have a huge cost on the budget and I need this for my own sanity as I’m at breaking point.  I have fairly good control, but I’ve had to work bloody hard for it and it involves A LOT of testing, probably more than what most would do by doing at least every hour till about midnight most days.  I’m not alone with this though.  There is an amazing Facebook support groups for type 1’s and we are all united in needing the CGMs funded.

I can’t afford that for the cost of CGMs for myself and my daughter the rest of our lives, I want to afford it but it’s just not possible.  It’s so unfair that we have to fork out such a huge cost for the rest of our lives for something that we got through no fault of our own. I want to feel like we have our condition under control and a CGM would give us that but more it will give us so much more sanity. We want to manage our health, so we are not put into dangerous situations and most of all we want to live a long and healthy life which doesn't become a burden on the health sector.

I recently tried the Dexcom.... I cried when it ended as OMG the reassurance, I got from the alarm function changed me completely.  I literally slept and at times felt normal without having to constantly check my levels as the alarm would just let me know if I needed to action anything.