The difference between being and looking after a T1D

It has been a while since I have posted and to tell you the truth it is because T1D has taken a backseat to MS in my life. Being someone who wants to know all about the disease that it attacking my body it takes precedence. However I thought I would jump back into the drivers seat as I was thinking to myself the other day there are differences in managing your own compared to managing someone else's T1D.

The feelings that you have on a day to day basis, the intuition that your body throws you and the ability to know what is coming are just some of the things that make actually living with the disease manageable. Having a 2 year old T1D I keep reminding myself that all of these things and feelings would feel normal at this stage. She wouldn't know that a sudden drain of energy, shakiness, faintness and all the other signs are part of a hypo all she knows is that mum and dad try not to freak out while draining blood from one of her delicate fingers and then once we read the low reading we run around the house and tell her she has to eat something sweet. On the other end of the see saw she also doesn't realise, as she did the other day, that if someone gives her a big bag of lollies like her sisters then she can't just gorge into them because the feelings of sickness, tiredness, thirst and the urgent need to go to the bathroom are not a normal part of "normal" life.

For me I know that if I step out side of the routine and disregard the rules of T1D then I have myself to blame for it. I know that the symptoms of either a high or low will teach me that I really shouldn't have ignored what works and what is good for me. But if I or my wife disregard the rules when it comes to our daughter then it is she that suffers, yes we suffer the pain that any parent will go through when they see their child sick, but she is the one that truly suffers in and out. It frustrates me that even I know the feelings that I have in these circumstances I can't yet get my daughter to understand that the feelings she is having are not normal and are feelings that need action and understanding.

Another interesting fact about knowing and having a history of T1D is that we continue to realise that  by knowing the signs of our daughter early and getting her onto a stable regime on the pump we have been able to reinvigorate her pancreas for a longer period of time. This means more natural function and less strain on little organs that are developing at a rapid rate. The "honeymoon period" is frustrating because every day can be different because the ability to know when the pancreas is working and when it isn't is impossible however we know our daughter will that us in the years to come as we are giving her the best start possible.

Living with T1D compared to managing someone else's is challenging. Being able to take notice of signs or changes that seem out of the norm are a day to day, minute to minute , second to second job that left unnoticed just for a minute could mean the difference of a mild hypo and a major one.

My levels are set to a point that I know with little worry, unless something strange has happened like a kinked line or a bad batch of insulin, that I can sleep comfortably through out the night or if I need to miss a meal then I can sit at a comfortable level. It will take time to get there with my daughter but for now and for the foreseeable future we need to test through out the night to make sure she is safe. A matter of hours could mean the difference of a perfect number or a high or low. This sees us have to give 2 hourly blood tests until a time that a clear pattern of stability is formed. With the pancreas still active this will be no time soon.

  I look forward to the day where I can teach my daughter what I know so that she will be able to understand what her body is doing at any one time. Even though she will grow up and manage her own T1D we will always be in it together and my wife and I will always worry and be proud of her efforts.

A happy interaction....

It is amazing as I contribute to online communities, talk to other parents with children with T1D and even have friends with T1 (even though we don't talk enough) but nothing stands up to speaking to a complete stranger who you connect to instantly because we share this disease.

Today while waiting for my wife to have her nails done I decided to take the kids to the park at the shopping centre. I open the door and the kids run, as usual, to all the fun and excitement that the park brings. Keeping in mind that I needed to make sure that my T1 daughter didn't drop low I decided to take a seat and watch the fun. Upon sitting down I saw a common sight to me but to most people would not even take a second except if they were looking to see if the device that was on the pocket was some sort of pager or MP3 player.

I knew instantly that this person knew what it was like to have a hypo or to be high, from over doing the sugar intake and not weed. It isn't everyday you come across another T1 so I decided to make contact. For a split second the Type ones in the near vicinity out numbered the normal people (well it didn't but there were now 3 out of around 10 and in my opinion that is almost a gathering) and I said  the mother playing with her family that I think there are now more type 1's here than normal people. Instantly when hearing those words there was understanding that we were both on the same page.

After conversing for minutes about myself and my daughter being T1 and jotting though the standard questions such as "When were you diagnosed or How long have you been Type 1?" I realised to myself that to speak face to face with someone who goes through a day simular to what I do is a relief and a joy. To be able to speak only half of a scenario and know that the other person can relate is something to behold. Usually if I told someone that I was 2.2 it would mean absolutely nothing to them without a long explanation as to the standard levels and what causes low blood sugar is and even what blood sugar is but in this instance I was told and I could empathise without even another word.

I suppose that this relates back the scenario where people talk about the advancement of technology across all sectors such as robots working in hospitality (I know a long way off) and less need for people as we are automating so much that where we used to have 10 people to do a job we now only require 2, where doctors will consult online with instruments that will send instant results online. There is a time where human interaction becomes one of the most important factors in life. To be able to relate feelings, scenario's, joys and frustrations is as important to me as breathing. Nothing can ever take away from this event and for any T1's out there that don't have the want or maybe the means to meet another T1 in person then I hope one day that you have the opportunity as nothing compares.

Hard to believe but my world changes again!

This world is a strange place. There are beliefs in this world that say before you come into this world your spirit chooses the lessons you need to learn and set out your life in front of you. A preset life if you like..... Now if that is the case, and I am not saying either way, then I really must have had some seriously boring past life's or I am just a sadistic bastard. After numerous tests in the past I was starting to believe that the results of the drooped left eye, tremors in the right arm, dizziness, overall body tiredness and, the small one, scaring on the brain was just as the specialist said just caused by stress and it would just be a case of managing that..... Today changed that belief.

Waking up this morning I noticed that my left eye was blurry. I didn't think to much of it and in fact headed off to my quarterly diabetes review which should only take an hour or so. I was also looking forward to getting my HbA1C results to see if it had changed after I have been focusing on my daughters T1 a little over mine. On a great note my HbA1C is once again 6.1.... My daughter and I match perfectly as hers was also 6.1.

After getting to the appointment I thought I better mention that I wanted them to check my eyes just in case it was something and they jumped to it. They seemed more stressed than I initially was but now I see why. They took some photo's of the veins and arteries which all looked good... No T1 problems. I then saw the endocrinologist and once again they said from a T1 perspective everything was great no signs of celiac, no high blood pressure, no kidney problems and a great HbA1C. But then she asked my about my eye. She informed me that we needed to be more safe than sorry and after reading the report from a recent MRI she said she strongly suggest sending me over to the eye causality to have the checks done. She also informed me that there were suggestions agin from the report that MS was a likely cause. I finished up my appointment and got directions to the eye department.

Upon getting there I take a seat in the over populated waiting room and wait my turn. After around 20 mins I get called into the nurses office to have an initial check and to have the drops that cause the eyes to dilate dropped into place. I suppose it was the start of a problem when before the nurse put the drops in she needed to have the doctor come in to see if it was safe to do so. The doctor came in and took a look and asked if this blurred vision only started this morning to which I replied "yes and it hasn't ever happened before". She took a quick look and informed the nurse to put the drops in and send me to get a scan of the eyes.

The scan took place and the operator said everything looked fine which was great to hear however it still left questions as to what was the cause of my problems. After another 1.5 hours waiting I saw the eye specialist and put my eyes through the wringer. More drops in to make them numb to test the pressure. Yes they had a device to push on my eye ball to see how we'll it rebounded. For a person who doesn't like things to do with the eye this was horrifying. I couldn't imagine putting in contact lenses. The results of the pressure test was that both eyes were a little high. I was then made to look up, down, left, right and everywhere in between while the doctors scoured every part of my eyes. After the review theory thing still looked fine however it was still blurry and then she held up a red pen and asked me to close my left eye and if the colour I saw in the right eye was 10 out of 10 when I changed and looked through my left I would have to rate the colour I saw. I swapped over and I could only rate the colour a 3. This scared the hell out of me. To not be able to see properly and now not to see the same colours, this got my heart pounding and still does.

The doctor informed me that the good news is the eye itself looks good however she thought another MRI was necessary. She didn't tell me what she thought it was but said she had to speak to the registrar to make sure what she has looked at is correct. Confirmation if you like.

I went down to another waiting room and 15 minutes later I was called again and another quick review was done. Afterwards the registrar informed me that the diagnosis for my eye was optic neuritis. Along with the results of the initial MRI it looks like the beginning of MS. Another auto immune disease. If one isn't enough now another one that has treatment but also some medications that conflict with my insulin regime.

More tests to come and a big change ahead and I am hoping this will be the last major change for a long time. The fear is high for me and my family but we will progress and I will win.

Misconception breaks my heart

Today I was heading to work like I do everyday however as I listened to the radio I listened to once again a news report that mistakenly reported that the doctors of the country were partitioning the government to think about giving diabetics and obese people access to free gym memberships because this would mean that it would be reversed and it would take a burden off the healthcare system because there would be less people with problems........ As you can imagine at that point my blood began to boil again I picked up the phone to try to speak to the team discussing this to try to put the context around the report and inform them to report the facts correctly.

The facts they don't know and don't see is the heartbreak of my 2 year old daughter begging not to do a 1, 2, 3 (this is what she knows is a set change or the needle she has to have to ensure her pump will continue to work and not get infections) she screams trying to run and hide. She tries to cover where the next shot will be. Even though I have been giving injections to myself for 23 years the act of giving a needle to a 2 year old little baby is something that I am never going to get used to. Having to draw blood from those tiny little fingers up to 18 to 20 times a day, making sure we rotate the testing spots to make sure we don't over use a particular finger is imperative to making sure her fingers stay strong.

My daughter and I were not overweight upon diagnosis and no matter the amount of exercise done could not stop us from contracting this disease. As written about before the major difference is that type 1 predominantly is diagnosed as a child and is a life long auto immune disease.

The general information given to a large population this morning is the exact reason why the majority of people think that T1D is something comes with fault and that it is on our own head to get rid of it. It is the reason why you get asked if you ate badly as a child or was over weight.

The ability to spread the word on the different types of diabetes is difficult to say the least. We have world diabetes day where I think, at least locally, a clear definition is made however we then take 2 steps backwards again with the generalisation. To have a separate name to truly represent the auto immune disease that we live with and will continue to live with long into the future would be a great result as it is way to easy to generalise and while the media have the opportunity to they will because it is easier.

Every T1 in the world, whether they are 2, 22 or 82, deserve to have the respect and understanding of the people who think it is their or their parents fault for having this. Maybe one day the powers to be will listen and make the change that so many of us are calling for. This would then help my little baby along with all the other children to grow up with understanding rather than misconceptions and ignorance.

A day in the life with someone that needs a single AAA battery to survive

It all begins the same place as most days for most people in bed, or your place of rest. The first thoughts upon waking is ok how do I feel? Does my blood feel thick?, am I abnormally thirsty?, am I busting to go to the toilet?, am I light headed, am I acting weird (like do I know what I am doing), am I shaking or is my lips tingling? Oh then I think "I woke up something must have gone right". I think all of these things like a check list as before I find out what my actual BSL is I try to determine what state I am in.

In the past I have woken up with a low BSL and even though at the time I have gone back to a child like state that is a fleeting moment before the reality of what has happened comes crashing down around me. My wife has told me that when this happens it is difficult to reason with me as I outright deny that anything is wrong and that I am low. All that she can do is point me in the direction of sugar and hope that my subconcious state drives me to eat. I usually does as the human body is a fascinating thing. Once the sugars kick in the emotional response tuns back on as the adrenalin subsides and then the tiredness. This is not a fun morning.

So once the checklist is done I can usually have a rough estimate of where I am. Sometimes I am way off but that usually has another factor like start or end of sickness. I get up and check my BSL. This morning 4.6. So in range but on the low side of range. I would have rather been in the 5-6 range (my golden numbers). Anyway as I was not hypo it was then off to get ready for work. If I had been low the process would have been swapped and it would have been breakfast first to ensure the BSL rises.

On this occasion after the shower and getting dressed it was breakfast time. Now yesterday after having my 3 weetbix with spender on them I found myself running high a number of hours after so today it was back to the drawing board just so that I could recall rate my minds calculations as to how many carbohydrates I was to b in taking. 3 x Aldi brand weetbix equals 30 gms of carbohydrates and once I added the milk I gave myself 45 gms into my pump to work out the insulin that was to be bolused into me to counter and convert the carbs into my energy. At the same time as working that out I logged it away as a reference for other days and also realised that I had given myself only 40gms the day before so that could have explained the difference in my BSL readings.

After breakfast I then checked to make sure that my insulin level in my pump resivour was ample to see me through the day. If it wasn't then I would have to decide on a set change now or to take my supplies and do the change a work. I don't like doing it but sometimes it is necessary. Just as I am about to check the resivour and I hear the well known beeps of my pump telling me what my intuition already knew, that my insulin was running low. I now know I have 24 units of insulin left which should take me through half of the day or longer if I go low carb for the day. I then have to collect my supplies for the change to go to work.
          1. One vial of short acting insulin
          2. One resivour for my pump
          3. One line and cannula that needs to be changed so that infection doesn't happen
          4. My sure click set changer. This is a little spring loaded device that shoots the needle into me
          5. Some alcohol wipes just in case
          6. Some needles and syringes just in case the line or cannula doesn't take

Along with this kit and no matter where I go or what I do I also bring my trusty blood glucose tester. Yes I went through the years of hating it and never actually wanting to use it but it is now my best friend and worst enemy depending on what it tells me my sugar level is doing.

With my supplies I can then do what a normal person could have done 10 minutes earlier, I leave for work.

The thoughts in the morning where I am constantly checking how I am feeling is like a record stuck on a loop. As soon as I know I am fine and that I start getting on with things I go back to making sure everything is on track. This may only be a sub conscience 10 second check but it is there over and over.

The morning goes well with meeting internally and with customers however as I head to 11am I feel my mind starting to stray. I feel the difficulty to comprehend everything that is being said. Being in a meeting with a customer trying to secure a $100k + contract I keep the alarm bells to myself knowing that the meeting is no more than 5 minutes to completion. In my mind while staying utterly engaged with my customer I run through the check to gauge the level of the hypo I was heading into. Ok sweats have started and my mind is only beginning to slow down. I must be in the low 3's ok I have time to get this done and fix the situation. I run through my mind the closest place to buy sugar or something that is sugar filled. One thing that I do when ever I am going somewhere unfamiliar is to scope out the area on my way there taking note of what is around. Yes if you are another T1 or are a medical professional I can hear your voices now saying "why don't you carry a spare amount of quick acting glucose with you at all time?" We'll the answer is easy one I run out of room as I do not carry a man bag and two it means having more self control than I have in this busy life. If I have some lollies close by I will want to eat them hypo or not so I choose to live in this manner. I do have some glucose tablets in my car just in case but I try to forget they are there.

I wrap up my meeting hearing the words I was there to hear "we are just going through the sign off process and you should have a PO shortly" and my attention is focused on getting to the coffee shop downstairs to get a full strength soft drink (normal coke, sprite, lift or fanta. I tend to find lift doesn't work as well as there is a little less sugar per serving).  My lips are now tingling and my mind is cloudy but I get there and order. Once I consume my drink I have to be careful as my body is craving energy and as it takes time to recover and bring my sugars back to the right level you can over correct and head into what I call a diabetic roller coaster. This is where you over correct with sugar and head into the teens and you start feeling terrible on the other end of the scale. Once you get that high you are so tired and you just want it down again that you run the possibility of going hypo again hence the ups and downs of a roller coaster. I like normal roller coasters but this type is the one I can't stand.

Also knowing that lunch time was coming up I needed to take that into consideration also. I rectified my hypo and headed back to the office. Funny thing is that on the outside everything for a hypo life  seems normal but on the inside once the adrenalin subsides the tiredness kicks in even though the day continues. There are many times I wish I could just curl up in bed after a hypo but that is not acceptable to me as life comes first and the diabetes will fit in with me and not the other way around.

It is now time to change the line and cannula site for my pump. I would of years ago hidden myself away with thought that people will not understand and will judge. Now I just do the change at my desk. I take out my supplies, fill the resivour and choose the new site on my stomach for the injection. Seeing as the cannula is a small plastic tube that can have the possibility if bending it is imperative that I don't remove the old site until I know the new one has been inserted. I pick the spot and inject. The new site is successful and I remove the old site and tape around it. Thankfully this one doesn't bleed as it is very annoying being at work and explaining a blood stain on your shirt.

Lunch time, it is now time to work out what I have. Do I be good and have a salad which means little to no insulin? Long term benefits good, short term benefits good, will power needed high. Do I have a sandwich? Insulin intake 30grams of carbohydrate for a standard sandwich with no fancy fillings. Long term and short term benefits good, will power needed minimal. Or do I go with maccas or a fast food? Between 50 to 80 grams of carbs and that is being nice. Short term benefit low long term benefit even lower and will power needed not to high. I do the right thing and meet at the sandwich. 30 grams will give me some energy to get through the after noon without having a huge intake of insulin. That along with a Pepsi max, my one vice in this life, I set off after doing a BSL test and it being 7.6.

The afternoon rolls on while I feel the usual rise in BSL after eating the insulin kicks in and brings it back into line. The conscience internal checks continue all day and another BSL is taken mid afternoon and this reading is the one that makes me smile on the inside every time I see it. 5.6. The perfect number, this means that today I am winning the war that I am battling. That even though you have the highs and lows there are times that you do everything perfectly and these are the times that you know are going to keep the complications away for another day.

Time to head home. Before turning the car on another BSL is needed. One of the stipulations of driving with T1 is that you don't drive low or high. No I don't do it every time as I know when things are off but don't tell anyone. However I test and even though nothing has been consumed since the last BSL it is now sitting at 6.3. Still good but not the magic number.

At home is interesting as it isn't my priority to make me first it is a matter of making sure my family are ok. This means turning the perception down a little and focusing on the children and my wife. Even more so now that my youngest daughter has been diagnosed with T1 also. The night involves calculating my requirements and my daughters and as you can imagine a 2 year old who is fussy at the best of times is very much a juggling act.

I go through the night ensuring that my and my daughters levels are ok. Before going to sleep the thought process of hope I don't go low/hypo. It has happened a few times in my 23 years where I have gone low while asleep and basically lost time and couldn't contro my behaviour. This is the worst way possible to start a day as it means my mind and body have to play catch up all day. This isn't to mention the effect of a low to my family. The behaviour can cause my family fear and apprehension around what is happening and want to make surei am ok. During times of sickness it will usually mean broken sleep with night tests and now with my daughter the night tests are a standard , not that she realises yet.

The reason in my heading I mention the triple AAA battery is that this is what my pump requires to stay activated. With out that I am not the bionic man.

My daughters new best friend!

My daughters best friend is attached to her side night and day, her best friend keeps her from the lows and the highs, her best friend is forever reliable, her best friend helps her with her calculations, her friend is forgiving when things don't go as planned. Her best friend can be a pain in her butt (but that is only if mum and dad hit a nerve)

Her best friend is her Medtronic insulin pump.

From the second day of diagnosis my daughter has accepted a little device that is attached to her via a needle cannula. It's somewhat familiar as she has always seen one on dad so I think it was a blessing in that sense but in every way she could have rejected as quickly as she accepted it.

She runs, jumps, tackles, sleeps, throws tantrums and is in general a normal 2 year old toddler with her pump. I will always teach her that there is nothing she can't do as long as she has drive to do it.

After 2.5 months of having T1D my daughter has had her first HbA1C and as the drums roll...... 6.1. I was proud of her and proud of my wife's efforts with managing not only T1 in general but also understanding the carbohydrate counting and the functions of the pump so quickly. On MDI people work for years to be able to see results like this, and yes I do understand that this result will fluctuate as my daughter goes through her developmental stages, but this is the best start I could have given her. The life on the Medtronic pump is essential to our success. It allows us to be able to give her what she needs using the inbuilt Bolus Wizard. As she is so small it allows us to give very small increments of insulin. It caters for different events and types of foods through the dual and square wave boluses. It takes away the need for slow acting insulin that in my opinion caused a lot of my severe hypo's.

Moving from MDI allowed me to put some flexibility back into what is a very regimented life. Naturally the body produces a base line of insulin to make sure that it stays level and then produces more once it realises that carbohydrates have been consumed and needs to be broken down into energy. Slow release insulin does this job but what it doesn't do is allow you to have varying levels depending on what your body requires at any part of the day and night. For example my body requires the most amount of insulin during the first part of the night while I sleep but then at 2am my requirements drop and so does my insulin intake. This allows my BSL's to stay stable instead of jumping up and down causing you to possibly walking the line of hypo in your sleep or running high.

Even though the pump isn't a cure and it isn't automatically adjusted making it as good as the information you put into it it is a management solution that gives a great amount of control each and every day and night.

Another element of the Medtronic pump that made me choose it over the others available in the market was the ability to read the clinical data. The pump connect via Bluetooth to a USB antenna which allows you to download the information to a central location (a cloud if you like) and with a single login you are able to look at days, weeks and months worth of data to find trends. You see the insulin given for bolusing, basal rates and corrections. You see the BSL readings entered into the pump and and anomalies such as temporary basal rates, exercise markers or sickness markers.

The benefit of having this data centrally located is that no matter which computer your at you will be able to find your information and use it to adjust your settings and requirements.

Another element of great reason for this pump is the CGM (Continual Glucose Monitor) sensor that talks directly to the pump and allows you to see what is happening with you BSL in real time. You can see the rise and drops and even can suspend the pump if it drops to low. The only frustration around these sensors is the cost. At this stage they are not subsidised by the government and not covered by any health insurance. At this stage it is out of reach for me and many many others and hopefully someone or some organisation will see the need to help cover these products to be available to all. These advancements make living longer easier and control a little less unpredictable.

I look back to the day I decided to move to an insulin pump and the day I decided it would be the best  method of management for my daughter and there isn't a single regret. I look forward to knowing that there will be advancements from here.

A change has come!

Today I see myself with a new challenge and opportunity. In the one day I have been contacted by the local news paper to talk about living with T1 for an article for world diabetes day and also received my invitation to speak at a diabetic educators conference in 2014 talking about diabetes and technology.

The topics and information begins rushing down to the tip of my tongue however for the article I need to make sure the important factors are covered.

1. A clear delineation and explanation of the differences between T1 and T2 is a must.

2. The work that goes into constant management by both the diabetic and the family is endless. It isn't a matter of set and forget it is constant change, calculation and adjustment.

3. Try to portray how strong we all are for what we are forced to deal with.

This is an opportunity to at least clear the messed up picture of what T1D is and how we live with it. I know it won't change the world however to have at least one person take a look and change their perspective would be an achievement. You would hope that a snow ball effect will hopefully start gaining momentum if enough of us stand up and start yelling and educating.

Now to the conference. This is a little more daunting. 30 mins, approx. 120 delegates and those delegates are the people we rely on to be in our support teams. I don't know what would be easier speaking to a hall of people who doesn't have a clue to educate or speaking to people who work in the industry. I suppose I will find out....

The technology advances have been amazing. Not only in management but also in regards to communication methods between T1 communities, doctors and educators or to the companies that put a large amount of money into research to make managing T1D as easy as possible.

The days of sitting in the waiting area of your specialist looking at the history of your BSL meter writing down all your readings and on the days when you couldn't give a dam you make up a few are over. BSL meters now connect to your pump, the cloud or to specially designing program's or apps on computers or even smart phones. Recording of my levels, even in the early days of a pump was not my strongest T1 practise. However firstly the availability to down load my optimum exceed meter to my laptop made things easier. It didn't add any smarts to the calculation but it did allow to start seeing trends and a clear picture for my support team to see what was happening. I then moved to the Bayer Contour meter that talked directly to my Medtronic Pump. When I first heard of this it was like Christmas. It would mean there was one less thing I had to worry about. This may seem petty however taking one thing out of this life is a big thing. It is like taking a process and automating it and as long as I don't run away from the meter as it is calculating then it will jump to my pump and give me suggestions if I am high or low.

I have been given another BSL meter that actually connects to my iPhone or iPod. To be able to activate its functions all you need to do is download a simple application that will take the information from each reading taken and start to graphically represent what is happening and what patterns are forming.

Now to the big change, the move from multiple daily injections to the insulin infusion pump. This was a life changing advancement. Yes you have something attached to you 24 hours a days, 7 days a week but to me it was more than worth it. It allowed me to put the required rates into my system when needed and put some normality back into life. No it wasn't a cure but it was definitely something that made my life easier and made me feel better inside and out.

From a management perspective the ability for the Medtronic pump to be downloaded to the cloud was a very attractive feature. It meant that as long as you remember your user name and password, not that easy now that everything is on line, you or your support team can see the latest results and patterns of what has been happening. It can be drilled down to months, weeks or days to find patterns. Along with the data that is sent from my BSL meter it now captures everything other than anomalies that life throws at you every now and again.

Away from the technology advances around management and delivery the biggest part technology plays in this life now is things just like this blog. The ability to reach others living the same life is easier than ever. For so long there was very little interaction but now you have the likes of Facebook, online forums, blogs, etc etc etc... You can open up your browser and read, respond or even ask a question that you know will get answers or suggestions from people who have similar experiences. This allows the gap between you and the next person living a similar life with the same challenges only seem like they are around the corner rather than feeling like there is no one else in the country let alone the world. This can be the one place that you can celebrate getting a perfect 5.5 BSL or the excitement of receiving you new pump consumables or even the place where you can rant or rave about someone telling you that we must have been over weight as a child to have diabetes, that their BSL's are out of control for no apparent reason and you just wish it wasn't there anymore. With all of these things unless you live this life the frustration and excitement cannot be understood however the support and understanding from across the world is not only welcome it is comforting to know there are others who understand and will listen.

If these are the changes that have happened in a relatively short period of time in our history then I look forward to what may come in the coming years as it can only get better from here.

T1D and the Government

Across the world the Governments of the individual countries take a varying view on this chronic disease. In America (this is not first hand experience) there are a lot more options and ranges but the help from the government is extremely limited. The way of affordable survivable is health insurance. I could not image the extra level of difficulty that this would bring to the world of T1.

On the complete opposite side you have the government in the UK who see T1D for what it is and help out to the ultimate end and supply everything at no cost to the individual who has T1D. I have been told there are waiting lists, restrictions and people who rought the system however it is one less thing that has to be worried about.

We now come to Australia. We have obviously taken a look at what works in the system in America and what works in the UK and met in the middle. The simplistic way to describe it is that the essentials such as test strips, insulin, pump supplies, ect ect ... are subsidised. We still have out of pocket expenses for everything other than needles (they are free) but there is help.

The most important thing to do is register for the National Diabetes Services Scheme (NDSS). This is the governmental agency that has the registration allowing the subsidised products to be purchased. This is monitored to the point that when I went from MDI to being on a pump which meant a lot more blood tests. Shortly after the change was done I received a letter informing me that I had exceeded the amount of test strips that I could purchase in a set period. I had to contact my endocrinologist and have a medical explanation written to ensure the limit could be extended. Since that was done I haven't had a problem again. Second thing to ensure you look for is entitlement for a health care card if you or your child is under the age of 16 then this is an automatic right to have. When I was first diagnosed, and keep in mind I was 10 y/o, the age limit for a health care card was 10 y/o so for me and my family we missed out but I am glad to say that along the way the government has realised that the age limit needs to increase and they have done so.

One thing that the government has helped shape a way to procure but not help subsidise is the insulin infusion pump for non child T1D's and as the instance of diagnosis getting older and now not only children the only way to get one is through private health insurance. I say that the government has helped the procurement process because they were instrumental in getting the health insurance providers to agree to cover what is now determined to be an artificial prosthesis.

As with anything about dealing with government agencies is the red tape, the processes that have to be followed and the time that it takes to get what is entitled.  To put it simply to get it done is to do exactly what is asked and provide all that is needed in a timely manner. Sometimes it will take asking the same question 10 times to get the answer you want. You need to be patient and persistent all at the same time.

The only thing that I will never understand is the ability to get never ending scripts or referrals to the specialists and medication that we need. I understand that the need to maintain the contact with the specialists is of upmost importance however this disease is for life and to be able to have the ability have a script or referral that is endless would help simplify a complicated life.

I believe that we are lucky to live in a country that helps but doesn't allow the system to be abused. I think the government needs to concentrate and put more funding into T1D rather than trying to get T2's up and about. These are my opinions but one day the government will look at the minority rather than the majority and put the required funding in to cure a disease rather than prevent a lifestyle choice.

Isn't a honeymoon supposed to be fun?

Now a honeymoon is supposed to the beginning of a beautiful life full of memorable moments and should be unforgettable. Sounds great doesn't it? I look back at the decision to call the start of your life with T1D as the honeymoon period to be grossly misrepresented.

The Honeymoon period is the beginning of T1D where the beta cells in your pancreas are still producing some insulin. At undefined times, even though it isn't to the full extent, insulin is created to break down the sugar in the blood stream. This plays havoc in every sense of the word.

At the time where you are trying to work out a baseline of what is needed to ensure you can keep the body in a safe range you are then thrown a curveball and what you thought was working now is either way too much and causing BSL's to drastically drop and Hypo's set in. Or the natural insulin stops and you no longer have enough causing you to feel terrible with high blood sugar.

What you also have to be careful of is that before you make any changes to what you are doing you need to wait for a pattern to form so that you can be sure the reason for the high or low was just not a one off. This can be frustrating and just plain annoying.

My daughter is right in the middle of this and it is difficult to know what is correct or not. For example during the night no matter what changes we make to a basal rate or sensitivity overnight it has little effect on the BSL. If she gets up to 11 mmol we now know not to correct as we know that over the next 2 hours it will drop down to 5 or 6 and once it gets to that point we also know that she needs to to have a bottle that we will only bolus 1/2 of what is required during the day and that will keep her just in the acceptable range.

As you can imagine the difficulty in managing what is required combined with having the difficulty period during the middle of the night and lack of sleep is challenging to say the least. We wake on a regular basis to make sure she hasn't gone hypo and we worry each and every second.

The "honeymoon" period has only one similarity to the conventional honeymoon and that is that it is something that you will not forget the moments within that period. This is not fun and full of memorable experiences however the ability for my daughter to accept and adapt is amazing. My wife tells it best after being awake for what seems like days at 4.30am after doing another BSL and thinking that our daughter was sound asleep, all of a sudden a hand comes out and touches her cheek and says "I love you mummy". At that point you realise how well she will get through it and how strong she is and will become.

Thankfully I am full aware that even though this stage is ridiculously difficult I know that over time this stage will finish and that the hard work that we will put in will make a great foundation to what will be a life of challenges.

Getting sick with T1D

If there is something worse than forgetting to take your insulin shot it would be getting sick. You not only feel terrible from the infection, virus or simple cold but you also have to run the gauntlet that sickness will make your diabetes run through.

I have had viruses and colds that have no effect at all on my BSL however I have also had them cause  absolute havoc. I have had times where my BSL has dropped and because of the vomiting there was no way to have sugar to correct. I removed my pump and still no increase. The solution in the end was a trip to the hospital to make sure things didn't go bad. Ultimately it was a case of medication to stop the effects of the sickness so that I could maintain my BSL.

Other times my BSL has sky rocketed and it has needed to increase my insulin intake by 100% to get through.

As with T1D the way to tackle sickness is get back to basics and increase the monitoring. While on MDI (multiple daily injections) I was always told to have small amounts of normal lemonade as the ability to eat normally would be limited. This did work and kept me out of trouble a lot of the time. It kept small amounts of glucose flowing to make sure the insulin I was still taking. One thing I was always told was to always try to maintain taking the regular shots. This was in the days before carbohydrate counting and having shots for what you eat so things will have changed but back then that was the way things were done and to tell you truth it worked. Now being on a pump and being able to count the carbs it is more to do with managing the basal rates to make sure they aren't to high or too low and adjust where needed.

One of the important things to do is test though. Even though extra management and effort is the last thing that is wanted when your sick it is required to know what effects and what is happening at anyone stage. To have information and tight management is the way to get through any sickness that chooses to inflict its wrath. Planning for those days is crucial, everyone gets sick at some stage so hopefully the process of getting through it causes the least amount of impact to your T1 health.

Another thing to test for is ketones. Another precautionary measure to monitor the possibility of going into ketoacidosis. Something that none of us ever want.

Sickness happens and all you can do is prepare as best you can.

An ember away from burnout!!

I arrived home and it had been "one of those days". With so much attention being put on my newly diagnosed daughter I had let my concentration on my own management slip. Now when I say slip I had some readings in the 9's, 10's and 11's and even at this level I didn't feel the best.

As I walked through the door and sat at the kitchen table I turned to my wife and said "I wish someone could take this away just for a few hours." I don't ask for much as I could have asked to have it taken away forever however even I know that won't be in my lifetime.

I was tired. Tired of the calculating, tired of the feelings and just tired of T1D in general. The change of managing myself and now also another T1 24 hours a day has its challenges and after nearly 24 years it is going to take some getting used to and balance.

After a reassuring hug and kiss from my wife and her telling me that she would take it away if she could it was up to me to flame the flailing ember to ensure the fire stayed alight and strong. It is amazing how a little bit of mis control can change your day to day perspective. I account the near burnout to a few things -

1. Nearly 24 years of T1D (this is a given and comes around every now and again, almost like a cycle)

2. Coping with the change of managing 2 T1's and having the thought pattern that if I stuff up with my calculations it is I who suffer but if I stuff up with my daughters calculations it is her that feels the consequences.

3. Bringing slightly out of kilter with my levels. I think this is a big factor in having chemical imbalances also. The moodiness increases for the worse and outlook become more negative compared to having tight control.

Each time there is one of these events in my life number 3 is part of the reason. Some of the other reasons come from life in general for example emotional state and stress in life will contribute at one time or another. People will not always understand as we all tend to keep the battle on the inside but if it does happen acceptance, support and understanding is needed.

ACCEPT that this happens and that you will come out the other side. Accept that this disease is not easy and the constant management can take its toll.

Have someone who will SUPPORT you. They may not understand or they may but all you need is someone to empathise with what you tell them and for them not to judge. The SUPPORT is a crucial human need and will work wonders when all you need is an ear.

UNDERSTAND what elements that may contribute to the situation. You may not be able to fix all the elements but concentrate on the ones you can. UNDERSTAND that with acceptance, support, understanding and a little hard work you will come out the other side.

To get the ember flaming again I focused like a magnifying glass on a piece of paper on the one thing I could change, my levels and settings for my pump. For the next hour I downloaded my results and pulled together the graphs and tables to look for the patterns. For some reason my body's needs had changed again and tweaks were required. I made the changes and agreed with my self that I would need to monitor closely the changes to make sure they fixed the problems that were presenting. I also agreed with myself that even though the work load has doubled it is in the best interest of my daughter and me to keep focus on both so that we can continue this battle well into the future.

This wasn't the first and it won't be the last time that the fire burns down to a mere ember but as long as it is still alight then the breeze will always keep it going.    

The T1 world is changing

It is amazing how the world is changing when it comes to being able to feel as if your not alone. For the first 18 or so years, other than a 5 days at a camp, I was the only T1 in my circle of family and friends. The ability to find support groups or people to have common discussions was impossible. The ability to feel like you were not the odd one out was non existent. Actually it probably around however seeing as there are only 122,300 T1D's in Australia and probably less back then there was no one nearby and no way of finding anyone even if there was.

Today my daughter has a diabetes team headed by and paediatric endocrinologist. When I was diagnosed I saw a paediatrician who knew a little about T1. More of a generalist rather than a specialist.

The first T1D I met was by chance really. She was a friend of a friend and we only knew we were T1D because our friend pointed it out. From there I began volunteering on teenage camps where I met some of my good friends who are also T1D and this was the time I realised that with people who go through the same life is the way to feel normal. To chat about what we do on a day to basis and to know exactly what each other is saying is one of the best feelings of my life. Finally I am not alone!

Technology is also making a massive difference. I now have groups across the world of people who live the same life and understanding. Also groups of parents having to deal with the same situations that my wife are dealing with by having a child with this disease. These groups allow you to ask questions and help people who just need someone to listen and understand. For the child T1D's they will grow up not feeling like they have to battle the war alone.

Tomorrow we head out with a lot of other T1D's and their families on the T1D walk for a cure. Hopefully the money raised will take us one step closed to the cure we are all waiting for. The ability to bring a number of T1's together will be another day of normality even though there will be a lot of non T1's you will be able to look left and right and see kids and adults with pumps and metres and you know that when you have to do a test ther will only be understanding rather than a strange look of fear and questioning why?

The reflection on the day after

After any major step, situation, episode or what ever you may want to call it there is the process of determining "why?". You track backwards looking at what was done differently to have caused the hypo. You look at what was eaten. You look at what was done in the day that could have been deemed as excessive exercise. But I had better go back a step first and give you a quick update on what the episode was.

After a busy weekend around the house the weekend finished and the week started in the worst way. An overnight hypo that I was unaware of and one that would have gone for hours. After cursing me for not helping with my 2 year old daughter overnight my wife realised something was wrong and grabbed my blood glucose meter. Somehow she got me to allow her to prick my finger and her suspicions were correct. She forced some jelly beans into my mouth with the hope I wouldn't reject them. For some reason when very low and the fight or flight adrenaline mode is in place I tend to outright deny that I am hypo and that I need help. Really not helpful I know and after the fact I can admit that but tell that to Mr Hyde when he is on patrol. The glucose finally starts to kick in.

Then the adrenaline subsides and I come to the realisation "Fuck that was a bad hypo as I don't remember anything". I really hate this disease. I work out that by trying to do something good for myself by going for a run has backfired and caused my body to join in the party and shoot me low in the middle of the night even though I had made precautions for this scenario.

I reflect after this that the burden I put on all that are around me is great and I hope I can repay their kindness and care somehow, someday. I also find myself writing this blog entry in the middle of the night watching those I love sleep with the fear that if I go to sleep now what is going to stop me from not realising again. I know that I will eventually need the sleep as my body is drained from the efforts of staying alive in the early hours the night before however it doesn't stop the fear creeping in.

A while ago it was easier as all I had to worry about was me as I was the only one with this lovely condition however since my daughters diagnosis my whole perspective is changing. No longer do my actions only effect my T1 life they can also effect hers. That effect that could possibly send her either high or low is a greater fear than I was expecting. We make the best decisions possible and yes mistakes will be made however we will continue to learn and adapt.

What learning a came from this reflection? Hmmm...

1. Be more vigilant around exercise and test in the middle of the night if there is a need for concern.
2. Have faith that the measures I put in place after this event will keep the beast at bay so sleep will be possible.
3. Every action has an effect that we must learn from. The difficult thing to do though is take the time to commit the learning to memory.
4. Try not to argue with people who are trying to help. Very difficult to do but trying to get through to Mr Hyde at some point.
5. Live for today like there are no others.
6. Thank my family for what they have to do above and beyond their normal life.
7. Reduce insulin intake overall to help keep any hypo at bay.

All in all each one of these are lessons that I have either not committed to memory or have chosen to ignore at some stage and going back to the drawing board is going to help.

Diabetes extends past the diabetic

As a T1D we may feel like we are in this alone in this battle and in a lot of ways such as how our condition does make us feel, the frustration of people not knowing, the tiredness of the constant management and just the hatred that we were chosen to deal with this. But the effects ripple a lot further than what we originally think.

It was only recently that I reflected back and looked at the ripples that went out to the people who cared from the day I was diagnosed. The learning curve for food and carbohydrates is constant. The 2 main people who took the reins to understand the effects of the food I needed to eat was my mother and grandmother. These two people changed their habits and delved into the low or no so sugar cooking. They would measure and calculate what I needed to eat without me even taking notice. Yes I knew the basic principle and the fact that instead of spooning the rice onto a plate without care it now has to be measured using cup measures.

I have always done my own injections so in that this has always been my burden but this was necessary. Once my daughter is old enough she will need to take over the responsibility of managing her own set changes and injections but until then we will educate.

Over the years the knowledge from my mother and grandmother was past on bit by bit and I suppose this helped contribute to the no complicated start I have had to my T1 life.

I look now at my life not only as a T1D but also as a parent of a T1D and I look at what I need to do for my daughter that she will need to be taught along the way. Right now being 2y/o she knows she has blood tests and she has a pump on but everything else falls on my wife and my shoulders until we can share it with her with knowledge that she will always have us to fall back on for support.

Even though it may not feel it the people effected from the wave are many but unless you look or they let themselves known you will feel alone.

What the professionals may or may not tell you

This is a list for T1D's that are newly diagnosed or just wondering -

1. With management T1D is not a life ending disease.

2. T1D is an auto immune disease where T2 is a insulin resistance or a slow down of insulin production. Both can be long term but there are possibilities to reverse and even prevent Type 2.

3. The majority of diabetics are T2 so you will quickly become frustrated when people expect that you were either an over weight child or ate a lot of junk food and sugar to get a this and that you can go for a run regularly to get rid of it.

4. T1D is a life long disease

5. A cure is only around the corner, I and every T1 I have met have always been told that it is only 5 years away. If that was the case I have nearly lived past 5 cures since my diagnosis.

6. You can do anything you want with T1D. I have jumped from planes, dived under the ocean, traveled to 1st world and 3rd world countries, I drive a car and have done so since I was 18y/o, work full time in a high stress job, have 3 beautiful children and a georgeous wife etc etc....

7. You have options - you have to know how to do injections but delivery methods are growing now more than ever.

8. The insulin infusion pump can change your life and put some normality back.

9. The pump if not managed can get you into trouble a lot quicker than multiple daily injections.

10. Buy a nutrician book or download an app to help understand the amount of carbohydrates in each and every type of food.

11. Put some hard work in early to know as much about carbohydrates and types of food as once it is in your memory it is there for life.

12. Never think that you have to be perfect. A lot about T1D is about educated guesses. Along the way you learn and can fix slight mistakes. There is no such thing as perfect.

13. Highs and lows are a part of T1D. Anyone that tells you it's not then you need to find a new person for your support group.

14. Constant highs and lows need addressing and that is when problems can happen.

15. There are possibilities of complication. Yes circulation, kidney disease, eye problems, amputation , heart damage and brain damage plus others are possible however with control and dudilagence then all of this is avoidable.

16. Be you first and manage your diabetes rather than letting diabetes rule you.

17. Don't be afraid of being different or showing the world how you live.

18. Become an educator and anytime someone gives you a strange look for pricking your finger or giving yourself an injection in public then take the time to educate as the majority of the population will not understand.

19. Find other T1D's through support groups, online or in person. This will give you a sounding board for when you feel like no one understands or is around.

20. Find a support group that makes you and your health the priority. The professionals in your team need to be able to teach you what you need to know to do everything yourself.

21. You will eventually be the expert of your diabetes. Doctors and educators can tell you the clinical effects however you will be the expert of how your body reacts and what will work best.

22. Always have someone around that knows what to do if you need them. Hypo or High.

23. Never ignore what your body tells you. Even if your body is telling you your high and the BSL shows a result of 5.6 it is always the best to be safe than sorry.

24. Let your BSL machine become your best friend. It will be around for a long time and tell you exactly what you need to do.

25. Live the way you want to.

This is no way a complete list and more will be added along the way however it is a start.

Isolation

With a world population being well above 7 billion people you would think it difficult to feel like your the only one around.  With the occurrence of Diabetes on the rise the majority still sit with the T2's. You can nearly throw a stone these days and hit someone that has T2 or knows someone with it.  This can't be said for T1's.

As I have mentioned before when diagnosed I was the only living member of my family with either T1 or T2. There was always and even still now a hole that no one knows what your going through with this disease. In the early days I would become introverted because I was different and I had no one I could relate to.

A year or so into my journey I was told that I was going on a diabetes camp. For the first time I was to meet people like me people that have to inject, prick their finger and have the same challenges to look forward to.  Upon getting to camp and settling in I realised just how regimented life with T1 was going to be.

I didn't realise or appreciate camp until a lot later on and in fact 20 years later when I jumped back in to be a volunteer and subsequently a camp leader for teenagers with T1. Those weeks away with other leaders and the kids really were weeks of normality. The people who were the odd ones out for a change were the non diabetics.

On one of the days we headed into town so that the kids could have an hour spare time. During that time a few leaders and I decided to get ourselves a milkshake. Now that seems pretty normal but where it becomes interesting and really normal for me was that my friend and I got the milkshake and we were both on a pump. We looked at each other and made the educated decision on the amount of carbohydrates each milkshake contained. I said 45gms and my friend said 55gms. We mutually agreed that we would meet in the middle and we entered 50gms. We went on with the afternoon and around an hour or so later when were sitting back at camp chatting and all of a sudden we both stood up and headed for the supply tent. On the way we both knew what each other was doing... Heading for the Hypo supplies. Looks like we over shot the estimate on the amount of carbs in the milkshakes. This may seem really minor and simple but what you need to understand is that I went 20 odd years with little to no contact with another T1.

I don't know who benefited from the camp more, the teenagers who are given the responsibility of managing their own diabetes with the knowledge that doctors and educators are close by for advice and help if needed or me who finally got to feel normal. It was about then I decided I wanted to help other T1's to not feel like they are alone and that there is support and help from people who have been doing this a long time and people who know exactly how you feel each and every day.

T1D can be a very lonely disease to live with because on the outside, unless we are wearing a pump visibly, everything looks fine it is the internal and the things we have to do to stay alive which makes the difference. Due to us all wanting to put life first and not be seen as different we try to hide as best we can the needles, tests and complications. We internalize the effort and celebrations for hitting a perfect number cause the standard person just wouldn't understand.

With the introduction of social media, blogs and online communities the gap between T1D's is getting smaller and hopefully the amount of people out there that feel alone is getting smaller. The isolation within a crowded room, I hope, is also lessening through education and the fact that we are hiding less and less. Or if we aren't then maybe we should. This disease needs you to be able to talk or relate to someone that knows what your going through and the means for that conversation is now here more than ever.

Diabetes and weight loss!!

To tell you the truth and this may seem strange but weight loss scares me. I know weight loss if needed weight loss is a very positive thing where just 5% loss will make a difference and 10% would be a real life changer. Unfortunately along with the daily balance that is T1D weight loss adds another complexity. Well it did for me anyway.

A number of years ago I was having difficulty loosing weight, well actually I still am and I do believe that the insulin on board that we carry with a certain type of person does make it difficult to loose weight. Some doctors will agree and some won't but I do believe it is true. Anyhow, I joined a weight loss group and started eating a strict diet and regular exercise. Standard stuff I know. It all started great in the beginning with a drop of 2 kgs. YAY my problems seemed to be well on its way to being fixed.

What I didn't take into account was that along with taking into account less insulin for the period while I was exercising I also needed to monitor the fact that my body as it shrank needed less insulin overall. Seeing as I only saw my endo between 3 and 6 months I was doing this alone (another stupid presumption). So the good times and bad began. I was loosing weight and over 12 months I had lost 30kgs. I was ecstatic. For the first time in my adult life I was at the top end of my acceptable BMI. Mind you everyone was telling me I look sick. You just can't win.

To get there though I had some of the scariest hypos thus far. The difficulty was that weight loss isn't predictable even though you follow the same routine week in week out. One week I would loose 2 kgs and then the next week nothing or even put on a few hundred grams. When my body decided to she'd some of that extra weight was when the severe hypos would hit and hit without notice.

After an actual gain the exercise and eating caught up with me and my body kicked into gear. I can only remember snipits of this as I woke up in time loss one morning and refused to allow my wife to do or give me anything. The survival adrenalin must have been in full swing as I was told I was all over the house to the point that my ex-wife picked up our baby daughter and left the house. The better thing to have done would have been to call an ambulance but the manage wasn't that strong at that stage. I must have stumbled into the fridge or cupboard at some stage as I remember coming to with a very tingling face and the tiredness that felt like I hadn't slept in days.  Not to mention that I woke up to an empty house with the car still in the garage and no note in sight. To not have memory and to realise you were just hypo is a freak out enough but when you wake up to a deserted house really is one of the worst things to live through.

I was on MDI while going through this weight loss episode and hypos were becoming regular and every time it happened I would have to adjust my insulin intake to ensure a bad one wouldn't happen again. In the end I nearly halved my insulin intake over any 24 hour period and that was a complete surprise to me as it was something that nobody had ever discussed. All I was told was that it would be beneficial to loose the kilos. Now that I am also on a pump it has a positive and a negative. Positive that to change settings and reduce my intake is easy and the negative is that insulin is onboard every second of the day.

Over the years and during marriage breakdowns, stopping suicide attempts and finally experiencing my ex wife committing suicide, single fatherhood to 2 very young children, court cases and just life in general unfortunately the weight has crept back on and I suppose that is why I am afraid or scared of weight loss. Even though I now know that the drop in insulin is needed along the way and extra management is vital I just don't have the capacity in my little head just yet. I am now stabilised and not gaining but it will take extra effort to bring it back down. 10% will be my goal to start with but health and family will always come first.

A morning I would rather forget!

Well today was a shocker and I hear you ask why and to put it simply my Hypo hit me today at work and upon looking at my BSL test result I was in trouble with a reading of 1.6.

To everyone else, my colleagues, my boss and some customers everything would have looked fine on the outside however I was struggling to form thought patterns. As I realised I was hypo my wife rang me and I told her I was in trouble and couldn't understand what she was saying. I said it was a hypo in very broken English and said I would call back.

Being proud and not wanting my work to know I was having trouble, an image thing, I headed for the outside to get some sugar. While walking to the corner shop, a stupid thing to do at 1.6 all my mind could do was swear a lot and have trouble making seance of anything. I was confused about what I was doing. The tasks I was performing at work prior were getting questioned in my own head as to why I would do that. I was confused as to where I was going however I knew sugar was my priority.

I spoke to my wife again on the way down and could not string anything together and the comprehension was impossible. There would be seconds, that felt like minutes that I couldn't speak and I could hear the frustration in my wife's voice. Again in broken English I said I would call again when I fixed myself.

I got to the food court and I was in such a stupid state that I even debated with myself as to what type of sugar I should get. I know stupid. I made my way to the place with the shortest line that sold coke and was able to string the words together "can I have a coke please?" We'll that is what I thought I said. It could have been completely different but the guy got the message and I got the coke. Out of habit I took a look at the nutrition panel and out of interest sake it is 40gms of carbohydrates for 375mls of coke. I opened it up and slammed the whole thing back. By this stage I realised that the profuse sweating had started and my shirt was becoming drenched.

It is amazing how quickly sugar can enter into your system cause within a minute of drinking the coke my thoughts were coming back to me. I could make sense and sentences again. I called my wife back and I believe she was relieved that I was ok. She also informed me that my daughter not long before I had a 1.5 which she fixed promptly. I don't know why but on this occasion we were in sync.

Looking back at the reasons for why this happened and it came down to a poorly made hot chocolate. Usually if I have one it is roughly 40gms of carbs to get me through it and it would be this way 9 times out of 10 however this one was the one where it was weak and obviously not the same sugar content so the carbs were not there for the insulin given. Due to my meeting and the conversation with my customer it slipped by me which was really annoying.

This was a bad one and if I had left it any longer I could have lost time but once again thank god for adrenalin and its ability to keep you going even in times of desperate need.

3 weeks into testing my knowledge

We are now over 3 weeks into the next chapter of my T1 life and the beginning of my daughters T1 life. To tell you the truth I am in complete amazement as to the resilience and adaptability of both my daughter and my wife. My wife has gone from knowing that I have T1 and some general rules all the way to knowing the intricacies of how to manage a 2 year old on a pump. She has gone from being scared of seeing needles to someone that is now giving them. My wife is am amazing woman and I thank the world that our daughter has her to help her through this journey. I am thankful also that she is a team with me battling to give our daughter the best T1 life possible.

My daughter, Shiloh, WOW. She amazes me on a Dailey basis. From cheering when her blood is accepter into her BSL machine to only spooking for mere seconds when we give her a set change for her pump. Absolutely amazing and I thank her for her bravery.

Even though she is only 2 she sees the importance of the pump. She accepts it on her waist and if anyone goes near or it is about to fall off because of rough housing with her sisters she calls out to either me or her mum "MY PUMP, MY PUMP" we look to her and usually find it either in her hand or about to fall or bungee as I like to call it. She allows us to calculate and enter the details because even though she won't know the details for some time she knows that once the pump went on she started to feel better. I would like to believe that it is her thanks for realising and making her feel the best she has in months.

A personal note to my daughter, because I hope that one day she will read this. "Shiloh you are an amazing child with strength, determination and percaverance. Life with T1 can be difficult but with help, knowledge and a greater partnership and family support we will survive and live like nothing can stop us. You are a precious child that will destroy anything or anyone that gets in you way. Your mother and I love you and thank ourselves everyday that you are who you are".

Over 3 weeks in and we are testing what works. Now that your sisters are home the activity has risen in the afternoons and we were experiencing lows so we adjusted your basal rate to settle you through you jumping, running and wrestling. During the night your levels were peaking then dropping suddenly so we have adjusted you sensitivity levels as the correction dose was a little to strong. All in all though you have better control than I do. I was amazed to look at the pump download to see on average no matter the time of day you are in range.

We know that there will be challenges along the way however this is the start I wanted and strive for.

Another night of broken sleep is ahead but good night to all and let's see what challenges T1D brings tomorrow.

The triple D's - Diabetes, Drinking and Depression

Diabetes: Drinking and Depression

Drinking, yes you can drink with diabetes. Do I drink a lot? No not at all but have I made stupid and dangerous mistakes that I regret now? Hell yes. Alcohol can have a strange effect on blood sugars so the stand calculation of carbohydrates is difficult. Alcohol in general has the ability to lower blood sugar levels and no that isn't a good reason to become a alcoholic. For me, and everyone may be different but this is the effects of the different types of alcohol -

Wine - red wine due to the tannins and skin composition effect my BSL greatly. It will shoot me up so the amount of insulin increasers where as white wine is a lot more subtle and I need to be careful with the alcohol lowering my BSL and the insulin I give.

Beer - I am not a real big beer drinker as I just don't like it however the introduction of low carb beer has helped a lot for the insulin intake. Beer you need the insulin.

Spirits - these have the biggest effect on lowering my BSL. Yes I have had straight spirits and that was not pretty however I was told very early on that to try and combat the drop have the spirit with a sugar mixer. For example a vodka and OJ. The OJ would counteract the vodka and hopefully level things off.

One of the most difficult things is though is trying to manage things while intoxicated. To remember to test, to remember the carb counting and to even remember insulin can become difficult. This then becomes a very dangerous situation. In my earlier years and just after I became legal to drink I was living with my older brother who decided to have a house warming party. My older brother is 6 years older so you can imagine the party. One of the other housemates that I had become friends with introduced me to the world of tequila shots..... One after the other they went down and slowly I even forgot that I had T1 eventually I must have had enough as my brother said he took me down to my room and put me onto my bed. I think I mentioned in an earlier post that my brothers never really needed to know much about my diabetes as I was the only living family with it and their lives were their own. However he must have felt something as he came and checked on me and freaked out to see that I was convulsing in my bed. He did the only thing he knew how to he called the ambulance and sent me off to hospital. I later found out that the party continued and luckily for me the problem I had was alcohol poisoning and my diabetes didn't take to much of a battering however I look back and think what if it did? What if I went hypo or DKA? The result of the evening could have been very different.

Now to the second D - depression. I am not a doctor so I use the term depression from people I have spoken to or documents I have read. I believe that all the processes and dudilagence that it takes to manage a life with T1 has an effect on all of us. Some call it diabetic burn out but I believe that it a form or the beginning of depression. There are days that I am tired, tired of the calculating, tired of the monitoring and tired of the life that is with T1. I push through however it would be much easier to just not. It would be easier to forget to watch what carbohydrates that go into my body, it would be easier to not test. Especially after a high BSL or a hypo the mind is effected to the point of sadness and distress. The mind becomes cloudy and it would be easy to just stop however the strength that we have to manage this disease is the strength that we draw upon to make sure we don't give up even for a second.

Some days I find it hard to give a dam about T1 and sometimes I find it hard to find the good side of life however the responsible side of me allows me to forget for hours and then pick things up again. There are times especially when on the roller coaster that it is hard to smile.

I sometimes day dream about allowing someone else to take the management away for just 1 day. I suppose it is a fantasy to live one day without any effect on my mind, body or soul. About 2 seconds after imagining these fantasies I pull my self back to reality and begin the process again. Some of us unfortunately the depression hits harder but we all have the strength to ensure success.

No matter what the critical disease is or even if it is mental illness we all must make it an acceptable conversation in our society because at the minute they advertise but the stigma attached to it is too much for a lot of people to even consider having that discussion.

Depression and T1D does mix but we have to be vigilant and talk. We have a a lot of challenges and this one should not be done alone.

Anything is possible but responsible actions are always needed to ensure we stay strong and healthy.

Ignorance is bliss but can be dangerous

Being in a minority group in the world has it's disadvantages and it challenges and as my heading states ignorance is bliss. Many people flow through life and unbeknownst to them they are ignorant of what can happen outside of their own life. They think they know all and that everyone else is the same. They can eat a whole wheat sandwich and would never think that that same thing could cause big problems to someone who is a ceiliac. They drink Coke and never think that with out consideration and calculation that same drink could send a T1 into DKA (Diabetic Ketoacidosis).

I was at a work function the other day, and I have had this before but this was the most recent, and we we actually playing golf for a charity day with work. It was close to 30 degrees and I had been drinking water after water. Everynow and again a drink cart would come by and I would ask the driver if they had any diet drinks? Most times they would apologise and say no diet drinks in here they might be in another cart but close to the last hole for the day I asked the same question and it was met with a comment that I had heard before but because I was becoming exhausted from the day of golf and managing my levels to ensure I stay out of the hypo range I answered abruptly. The statement was "why would you want diet? There is so much chemicals in that stuff it will kill you. You would be better off with the normal stuff." My response to that was short and sweet as I was not in the mood to educate today "The chemicals in the diet would kill me a lot slower than the sugar in the normal stuff!" I turned and went to tee off. Usually this would be met with some sort of education or even a comment about being a T1 but not today.

Other times and it is predominantly with drinks I have ordered at restaurants and fast food places. I place my order for a diet coke and when it comes, either as a mistake or a lack of care the first sip I take I test the water to make sure it is what they say. I once went to a movie theatre and ordered my diet coke and for some reason that day I was ridiculously thirsty and to tell you the truth the post mix drink was a bad mix however I got into the movie and just took long sips of the drink until it was nearly half gone. I continued drinking and about half way through the film I started to wonder why I was starting to feel my blood thicken and my over all body ache. I went through my head what I had done. BSL was good and I hadn't eaten anything so there should be no reason for it. I checked my pump and everything was working fine. There was no redness around the site indicating infection so I was stumped. Then it hit me, I took a careful sip of my drink, 3/4 empty drink, and asked my wife to do the same. The slight honk of the sugar crystals hit me and I thought wholly crap I just drank a ridiculousness amount of sugar and have not had any insulin. I quickly pulled out my tester and found that the damage had quickly shot me into the 20's and the explanation on why I felt so bad became clear. I corrected using my pump and waited for the levels to start dropping. Because of the amount of sugar a number of manual shots were needed to make sure I came down and this process took around 3 hours to get back into range. Not to mention the many hours of recovery from there.

As I said ignorance is bliss but in the wrong circumstance it is very dangerous. If that was to happen to my daughter and she wasn't able to tell me what had happened it could have taken her to DKA very quickly. I always watch when ever possible when post mix drinks are poured now and I have pulled up a half a dozen people who put regular in instead of diet. One day care for others will become important and ignorance will become less however you can lead a drink to water but you can't make them drink. The same is said of many people no matter how much you teach them unless they want to learn then your words go on deaf ears.

When you know no one is listening

You hear it all the time "Your as good as the effort you put in and from the help you receive from the professionals you engage to be on your team." You would think that the doctors and specialists would  be some of the most important of all the players on the support team however I am hearing more and more around the frustration that T1's are feeling from specialists and doctors either not caring or not listening to the opinion and views of the people who live with this disease. For those who care and work hard you would know the ins and outs of what works for you and would be the best resource that the specialists have.

To me I try to learn from what I do and try to find out all I can about this disease. What I look for, and in some respects see it as a job interview where I am the employer, in a specialist is someone that will work with me and listen to what my views are. I have had the scenario in the past where I have had specialists who think they know best and because they have read a book and have been tested in it then they know absolutely everything there is to know about living with T1.

I will never say that I know everything and actually very far from it but to have a support person tell you it is their way and their way only only makes me stop listening and I loose respect for what their experience is.

I am not sure why doctors and specialists get this way but I presume that it could be because of the ratio of T1's they deal with compared to T2's and also the amount of people who take the management for granted and spend a long time in denial. That said there is still a lot of highly managed T1's who see the benefit and the drive to do the best they can.

I was lucky to find an endocrinologists who helped me understand everything I needed to and teach me how to manage things myself. I would attend appointments and instead of telling me what I had to do he would ask me what I thought the problem areas were and how I thought I would fix it. After listening we would go through the results and he would either approve of the amendments of offer slight suggestions as to what could be other reasons or what methods could be better off. I put it to this help that I have gotten through 23 years relatively un-scathed. There were times where I would miss appointments and sometimes go months with out visits and even though I would feel the guilt about not attending it was never judged or even mentioned. All he was there for was my health and well being and I felt he understood that even though T1 is a big part of life it is still only a part and it needs to fit in with life rather than the other way around.

With hesitant feelings I recently moved interstate and away from my endo and lucky to me I have found another, recently out of uni, who sees the work that has gone into my life and feels that he is also their for support and suggestions through consultation.

When no one is listening along this journey it is very difficult to listen to yourself and your body. The ability to have good control is difficult and the rate of diabetes burnout would be great. As I said in the start "your only as good ad the effort you put in and from the help you receive from the professionals you engage on your team" but sometimes it just takes some extra time and effort to find the right team.

Adding a licence or 2 to a life with T1D

I would have to say I have been lucky. Whether luck is something that happens or if it is something that is awarded for hard work then that comes down to personal opinion but I believe that the work you put in will determine what is returned.

Before getting my learner a permit I was freaked out. I had heard all the horror stories including T1D's can't drive, limited licence possibilities and continual review just to keep the licence were just some. However I went to the 2 places where I was going to get the answer for sure, my doctor and the road authority VicRoads. What I found out not only surprised me but put my fears to rest. Yes T1D's can drive and drive unrestricted however it would take good management and a note on a licence indicating that there is a medical condition. The other thing that needed to happen was to have a medical report completed by my doctor. The report would look at the overall control. If you are neglectful and have a lot of highs and a lot of hypo's then the ability to be allowed to drive is diminished. This isn't the only condition or situation where this happens I had a conversation with my Nan just recently where she was recounting that to be able to keep her licence she only now (over 80 years of age) needed to have a yearly review to ensure she was capable. She was shocked to realise that even though I was no where near 80 years old I had been having similar reviews for the last 16 years and would continue for the rest of my life.

If the report isn't done in the required time or if you forget to do it then your licence is swiftly suspended until such time as the review is done. As I have my endocrinologist fill in my medical report it just so happened that the report was due and the was a lag time to be able to make an appointment I was in trouble. I had to contact the authority and explain to them the situation. Thinking that I was going to be walking until I could get my report done I was surprised that they gave me an extension until after the time I had my appointment booked in for. There is a reason why these measures are in place and as always it is because of the minority that the majority have to suffer.

One of the easiest thing I did though after having my car licence was to get my motorbike licence. Once again thinking that there could be some hurdles the was little more than a single question "was my car licence up to date?" To which the answer was "Yes" and I proceeded with the tests and practise exam and yes obtained my licence. I actually went a few years without a car at all but then I had kids so the fun had to stop.

I suppose as with anything with T1D it is daunting to know what could happen and what hoops you may have to jump through to do something however it should never let you stop trying. I have travelled, scuba dived, jumped out of aeroplanes, gone on numerous thrill seeking roller coasters and lived life in general. Not because I want to prove anything but because I want to live the best life possible and I will make my diabetes fit to my life and not have T1D dictate what I can or can't do.

The one thing I never wanted to share or give away!

This was the day that horrified me for years. This was the day that I thought could not happen to me or my family. This was the day that nearly broke me. The day was the realisation and the subsequent diagnosis of my daughter to the world of T1D.

In my head I had thought it could be possible that because I was the only one in my greater family to have T1D then I was going to be the one that was going to live and die with the disease. The genetic component would be lost on me and it would not be shared or spread. I think now what an idiot. With everything I know how could I be so naive how could I not prepare for the day just in case.

Well in truth maybe all that I had done in the last 23 years was just a lead up to this day. The understanding of the ups and downs, the understanding of management of this disease and the what to do and the what not to do's. Maybe, just maybe, this moment had been laid out and all of my experience was meant to be able to help my daughter be the best she possibly can be.

I am writing this post sitting in a reclining chair that will double as my bed tonight in an unknown n hospital next to my 2 year old daughter who sleeps not knowing or understanding that I will be looking over her tonight giving her 2 hourly BSL tests to ensure she is kept in a safe range, to ensure that I protect my beautiful girl no matter what.

2 days ago the day was like a lot in Queensland, nice weather and a nice outlook for the week to come. I didn't start the day well as my pump had disconnected itself in the middle of the night and I was as high as a kite and felt like shit however after correcting my sugars and recovering my wife,sister in-law and baby daughter headed to the shops to get dinner. My wife had mentioned,and I had noticed, that over the last couple of weeks our 2 year old looked a bit off but we put it down to a virus and believed it would pass and she would improve. While going through the shops my daughter persuaded us to give her some sweet treats just to make sure she didn't have a tantrum (that is how we will think of it).

The trip progressed but what was becoming extremely evident was that my daughter was desperately thirsty for water and was in need of a nappy change every 30 minutes to an hour. This started the thoughts that I never wanted to have or believe I was having. The amount of times in my own head I said to myself that "don't be stupid she has a virus and nothing is wrong" was ridiculous cause I knew deep down what was coming but I was not going to admit it to anyone. We went through 2 bottles of water in a matter of minutes and the same in nappies.

I looked up and my eyes met with my wife's and the look said a million things we were both thinking but one stood out "it couldn't be, not our little girl". I had my BSL meter with me and we bit the bullet and tried to test her blood just to reassure ourselves that this virus was just that however if you can imagine trying to prick a 2 year olds finger in the middle of the public while she was screaming it just wasn't going to happen so we abandoned the idea and finished what we needed to do.

We headed home and after arriving and changing my daughters nappy again I observed her stars up and pee again straight away but this wasn't anything close to normal. This filled an empty nappy and caused it to leak onto the ground. My next move was to grab my BSL tester and have my wife hold her ASAP.

With a screaming gaunt looking child I prepped the tester and found the finger. I reduced the depth of the device that would stab a hole to release the required blood. I positioned it on the edge of the pad of the middle finger and prayed that this wasn't going to be what I knew it was. I pressed the button to further screaming as I squeezed to get enough blood. I drew the blood onto the test strip and waited for what felt like an hour but was in fact 5 seconds for the results - HI. No I am not saying hello that was the reading. On the BSL meters there is a range that they go to and anything above that range is shown  as HI which basically means that her BSL was higher than 26. I still didn't want to believe it so asked my wife to wash her hands as I reset for another test. The process was much the same. The screaming was louder and the struggling was fierce as the element of surprise was gone and gone forever. If only she knew that what was happening was going to be the start of the rest of her life. The result was the same - HI.

The disbelief continued even though every fibre in me knew what was happening. I told my wife we needed professional diagnosis as my tester could still be wrong. After  a visit to the GP (with another test), a call to my long standing endocrinologist in Victoria we moved the older daughters to the next door neighbours and we rushed to the Royal Children's Hospital in Brisbane. The fear and guilt had set in on that trip and the tears started flowing from both myself and my wife. My wife cause her baby had gotten a life long disease that will see her need control, needles and the help. Me cause the only thing that would flow into my mind was that this was my fault. That if my wife had a child with someone else then this would not have happened. That my worst nightmare was in progress and this was the start of a never ending roller coaster with very high highs and very low lows.

We arrived at the emergency department and informed them of the systems and the test results and within 30 seconds we were moved in to the consultation area and the fun began.

To get the tests started the doctors had to take blood so a cannula was to be out into my daughters hand. If testing her finger wasn't taken well you can imagine the yelling and screaming of a large needle being put into a vein with another person holding the arm still and me gently holding her in place by lying over the top of her and trying to reassure her it was going to be ok. I still have the scratches healing from this event which would show you how rough this was.

The cannula was out in and her arm was put on a board and bandaged to ensure that she couldn't touch the line. The time had come to see her have her first injections. One in each leg at the same time. One to get the sugar levels down short term and another to keep them down over the coming hours. Knowing how to give myself needles I watch in horror as they aimed at each leg. The older of the 2 nurses held the leg still however the younger of the 2 allowed for movement. I heard the count down "1, 2, 3" and the needles struck. Screaming continued and as my daughter clenched the younger of the nurses lost grip if the leg and the syringe and to my horror the needle flayed around in the leg. The insulis were givens and the screaming started to subside. Now as it was now around 9pm and my daughter was already exhausted from her body fighting the lack of insulin but now she was completely wrecked. The insulin started to work and it was amazing to see my baby come back to us. The grumpiness started to subside and our beautiful baby started to look happier in herself.

It would be information we found out later but at the time of getting to the hospital my daughters BSL was 70. Keeping in mind that a normal BSL should be between 5 and 6 hers was extremely high and at a dangerous level. Another very interesting fact was that the highest I have ever been is 56. At that time I was vomiting and almost in a coma. The ability for a child's body to cope and adapt is truly inspiring.

I watched my daughter all that night not wanting to allow her to be out of my sight and not wanting to allow anything to happen to her. What I then promised to her was to help her understand this disease and the effects it will have on her. I promised that I would never leave her feeling that she is alone and that no matter what I would find a better way of living for her. My 23 years was going to be the basis of knowledge that was going to give her a path when old enough to understand. Yes she would make mistakes but I will always be there if she wanted me to pick her up.

The next day came and the time I had been waiting for was upon me. She was due her next 2 injections and it was time for me to administer them. The 30,000 odd needles had prepared me to not freak out however it is very different doing it on a toddler compared to a teenager or adult. It turns out that after the next injection that was done by my wife, number 1 for her, she has the more gentle touch.

The next 3 days in hospital were about education. This was some what sped up by the fact I already knew most of it but my wife needed to go through the basics and I was happy to help out where ever possible. It was decided very quickly by my wife and I that the best management method was going to be a pump. With our daughter being very picky when it comes to food we would not be able to ensure she would eat the required carbs if we were doing MDI. We knew that the pump was going to be interesting to see how our daughter would accept it but we also knew that she would be young enough to not know any different very soon.

We chose the same pump as the one that I use to help with the learning curve. The adoption from my daughter to having a device attached to her permanently was second to none. After the insertion and the initial shock screams it only took 2 to 3 minutes to go back to playing and being herself. Later that night when it was just her and I in the hospital she found the pump, and seeing as I had locked it and that I wanted her to know what it was, I let her look and press the buttons. At that time I pulled my pump out and let her compare them. Holding both she pressed them together and made a kissing noise. It was then that I knew she was going to be ok with this as she already knew it  of it in her life. To myself I thought that this little girl would be my mini me.