One size fits all

This may be the case when we look at some hats, stretchy clothes and accessories however in the world of T1D nothing can be further from the truth. In the general public, through the media promoting a very general picture when it comes to T1D, T2 or even T1.5, it is believed that if you have Diabetes you have one not looked after yourself or your parents haven't provided  a healthy lifestyle when your a child. So in short the perception is that one size does fit all or even most.

What the general public do not realize is that there are so many things that are different to each and every T1D -

• The only one thing that is the same is that we all have a auto immune system that doesn't like out Beta insulin producing cells and we can either no longer create insulin or are on the way to that.

• How exercise effects us can be different. During and after the exercise some peoples adrenaline will cause the BSL to increase rapidly and then find that a drop in the actual BSL from the exercise will happen after the adrenaline subsides. Others have a drop during or straight after.

• Basal rates (the background insulin either with short acting insulin through a pump or long acting insulin on MDI) will be different. Mine change depending on the time of day. For some reason when my body rests is when I need the highest amount of basal insulin. Others such as my daughter have a very low rate over night and higher rates during the day.

• Food can have very big differences on everyone. A simple piece of bread can effect one person in one way and someone else completely different. Different times of the day is also able to see different insulin requirements for the carbohydrates eaten. Breakfast lunch and dinner are all different in my pump. 

• The way in which people are effected by highs and lows also vary greatly. Some people are highly susceptible to  DKA or dangerous lows without really knowing. Other people will know it is coming before it gets to a dangerous level. Some people become emotional with lows, some people get the shakes, some sweat heavily and there are many other possibility that are experienced however these are what I feel sometimes singularly and sometimes all together.

• Management methods are different also. Some people are happy with the management that MDI give them however there are others that have become fed up with the constant injections and move to the insulin infusion pump. As technology changes I am sure there will be more options with management so time will tell what other differences there will be.

Even though this list isn't complete as there are differences each and every day that show that One size does not fit all T1D's.

Making it a little easier

Some may say that there is nothing simple about dealing with life and then adding T1D ontop, others may take it in their stride and it just becomes of a part of who they are. But there is one thing that is certain when you get ill and you feel like the sickness is all cumbersome however T1D never takes a backseat.

My last post that was a while ago now saw sickness hit my family and take a large toll on my 3 y/o T1D daughter where a week in hospital was required. All is well now and she is strong and healthy however I reflect on how things have changed since I started living this life.

For about a week of two before my daughter shows any signs of sickness her body already starts fighting what is within because the first sign of sickness is her BSL rising rapidly. This means greater amount of monitoring and care however the over the easy part that we manage is the ability to adjust the temporary basal rates that we have on the pump. For the last sickness we engaged the temporary rates to 200% of her normal requirements but depending on what was happening throughout the day and what ever was going on in the body we would actively manage the rates varying from 50% (needing less insulin) to all the way to 200%. Yes is takes a lot of management, monitoring and changes but with a 3 y/o or even my self  as a veteran adult monitoring and positive adjustments are part and parcel of this life with T1D.

I thank the advances in technology for the ability to make changes to my daughters settings on the pump instead of having to make additional insulin shots just to keep her out of DKA. Even though with sickness my daughters Ketone levels rose we actively managed with the changes to the pump to keep her out of DKA. If we didn't have the pump we would have been in hospital for both the Flu (which took a big toll) and even more seriously the poisoning of ketones in her system. After 24 years of T1D I have only been in DKA once after diagnosis and unfortunately that was due to doctor error and sickness rather than  poor management and it is something that I do not plan on getting into ever again. It is a terrible place to be and the last time I was there I was basically in and out of a coma for days. My wife and I will do all we can to keep our daughter out of DKA and hopefully teach her all that she needs for the day where she has the full responsibility to manage everything herself.

The other part to the technology that was the difference between DKA and even just sanity for my wife and I was the CGM sensor that is connected to the pump. To be able to monitor the ups and downs and then make the necessary proactive changes takes a lot of the guess work out of doing what we do.

Anything to make things just a little easier, even if it was the simple change that allowed my BGL meter to talk directly to my pump, is welcome and we will continue to find things that can be added to our arsenal to make life choices easier.

CGM an updated post

Ok it has now been nearly 6 months of wearing a CGM. I know time fly's when your having fun. Anyhow I have experienced stress, illness, happiness, fun and hardship. I have worked, been on holiday and just been at home. All in all no matter the situation I see the CGM as a valuable piece of my arsenal in this battle with T1.

I have had insertions that have not gone right. For example when you hit a blood vessel and the fluids that the sensor uses to monitor levels are in short supply. The readings can be skewed or in 1 or 2 situations the sensor has had a failure however when it hits the right spot the sensor is in tune to what is happening. In recent months the sensors that I m using, Medtronic Enlite, have also been upgraded for performance as well as comfort. The actual surface size of the sensor component has been reduced and the delay between the blood level and the sensor level and once it is in I have had no problem with even knowing it is there. Other than every now and again catching the sensor on a piece of clothing but that also happens to my site sometimes and I quickly remember it is there and am more careful.

On the old sensor my daughter, who is quite fine in stature being 3 and all had some difficulty with finding the right spot. We had to find some tissue where the stores of fluid under the skin were stable. To tell you the truth we went through a number of sensors that either wouldn't begin or only lasted a day or so before they began alarming and failing. Since moving to the Medtronic Enlite advanced sensors we have had a lot more success. The sensors have been accurate and they have had no problem lasting the 6 days that they are active for. We have had some assurance and piece of mind over night knowing that if there is a unsuspected drop then the alarm will sound and we will be alerted before it becomes a problem.

In recent weeks including a weeks stay in hospital due to my 3 year old T1 catching influenza A, the CGM was invaluable. We could see when things were just not working and we were able to keep her out of DKA. Her ketones were out of control but we managed the fluid intake and the BSL level for as long as we could at home before we had to make the move to hospital. With the Flu and a viral eye infection she looked like hell but we kept her from what we would consider a night mare in DKA. Even when getting into hospital the doctors where surprised that we were able to maintain as we did for the time we did. We are thankful for the tools we have that are there to help each and every day.

Looking at the advancements in the last 23 years I now wonder what is next. I see articles trying to say that they are close to understanding why T1 happens and I see the trials of a artificial pancreas that will be able to administer both insulin and glucagon in small amounts to make sure levels are maintained. I see articles on all other types of pumps and thoughts on management such as inhaler medications and I am excited as to what is next. Working in the IT industry I see how quickly the world is changing and I know that the advancements that are to come will come thick and fast. There will be a option that will suit all of us and hopefully will make us even more successful I managing this disease.

When sickness hits!!!

This week continues to be one to forget. After a semi easy week our older 2 daughters arrived home from a trip to Fiji. I know nice, huh? It would have been until I got the phone call saying that they were home and heard the words that my oldest daughter had been vomiting within the last 12 hours.... To tell you the truth I and my wife began freaking out cause unlike a non T1 family we have the difficulty of managing the sickness along with the massive dangerous roller coaster that T1 can bring. To put it simply also was that our little T1DD who just got over a cold and in the 9 months of T1 D had never had a gastro bug..... I sit here now and I can no longer make that statement. I sit here after a day of vomiting, crying, stressing, arguing and T1 D trying to get out of control. Not a day I would recommend to anyone.

But to go back a step in this household seeing as there is 2 T1D's and 3 non D's you would hope that maybe the world would give us a break however that was not the case. I was the first to catch the bug. With sensor attached and the pump on my hip the sickness took hold. Vomiting and fever began and took hold for over a 24 hour period. Some liquids but no food over that time at all. It was at that moment that over the last few weeks I had been doing basal testing and working out my correct levels. I actually watched my levels stay level through this ordeal which was great to see. Another great benefit of being on the CGM, it meant that I could concentrate on the problem at hand and have confidence that I was not getting into trouble with my levels.

After nearly 2 days I am finally back onto solids and able to say that things are back on track....

Just as I did say that to myself the next episode began, our 3 year old T1 went down hill quickly. I got the call from my wife just after she was shopping to tell me that the gastro bug had hit again and that she had vomited everywhere. The problem was that, unlike my T1, her's was taking it hard. Her ketone level's rose from 0.1 to 2.2 and she refused any liquids or medication to try and help. I began coding my wife in sick day management which included the increase of insulin to try and flush the ketones and an effort to get some fluids in to try and keep dehydration at bay.

By the time we had gotten to the 2.2 ketone level we gave ourselves 1/2 an hour before we headed to the hospital. Luckily our daughter finally took some panadol to try to get the fever to drop and she started to get some colour back in her face. We continued to check he BGL and ketone level and the were down to 8.6 and 0.9 respectively. Now this was not an easy feat as each time we wanted our daughter to drink some liquids it meant an argument and ultimately some sort of bribery but we have had sips every 5 to 10 mins. I know probably not enough but it is doing something to bring the levels into check.

Unfortunately as mine lasted for over 24 hours it is not going to be a restful night for mum and dad as we need to continue the fight while our baby tries to get some sleep and allow her body to rest.

I congratulate my wife in her first serious bout of gastro and her management. She has been tough when needed to be and loving and understanding for the rest.

This battle with T1D is never welcome and never pleasant and all we can do is manage the best we know how. If we falter then we know there is help with the doctors but for now we try and try our hardest.

Fears

One of the first things my endo ever told me when considering the pump is that "The pump is not a cure! It is a management technique and if abused it can be dangerous as things can change quickly." I sit here now and wonder whether or not the rigorous and strict beginning was a blessing in disguise.

To this day I still try to live the diabetic lifestyle and diet (Before there are comments I know there is no such thing as it should be moderation and nothing in excess and I suppose that is what I mean). I steer clear of normal soft drinks like it is poison. I limit any sweets so that it doesn't blow out my BGL. The only reason I look at this is because I see how my daughter, who has been on a pump since day 2, has to an extent continued with her life as it was. I argue with my wife cause to me if we are able to put some rigor in place now it will make the journey later in life easier. I look and wonder if in 20 years will she have the knowledge to make the right decisions to make sure she steers clear of complications.

Within this world of expanding choices and accessibility to anything I fear that if my daughter doesn't understand limits then her journey will be made up of difficult experiences. On the flip side also life is there to be lived and sometimes making the wrong decisions is what makes you learn the best. So maybe it is a mixture of giving the foundation of what the right choices should be while knowing that every now and again the bad choices will prevail and as long as they are choices that are learn't from then this is ok.

After living completely inside this battle for over 2 decades and now within a side battle of MS the biggest thing I have to learn is to understand what it is like for my little baby to grow up with this and not know any different. I was 10 when I was diagnosed so do have memories of what it was like without it but she will never know the difference. I have to understand that she will one day understand why we have had to do so much for and too her. All I want as we all do is for her to have the best future she can have. This will mean structure and processes and also a whole lot of time where life comes first (of course with T1 along for the ride).

She will be taught at the minute that the pump is only a management tool and that it is something to be respected and used within guidelines so that the dangerous part is kept at bay.

To pump or not to pump? Things to consider....

Any milestone in this life with T1D, whether it is the first test or injection or just the first time you try something new and you calculate your diabetes to perfection, is a feat to behold. In this age one of the biggest management changes that can be made is to choose whether or not you start pumping or stay on MDI.

As with all big decisions there are positive and negative aspects that need to be considered. But with every decision there is always a balance between the 2 and hopefully with sound judgement the right decision is made.

I have spoken in part of my decision about pumping and even the decision to have my 2 year old daughter on a pump but I suppose I haven't gone through the consideration process.

First to consider is what stage are you at -

• Are you a long standing or well experienced T1D and you have been giving so many injections over the years that your tired of the routine, the feeling of being a pin cushion, the inflexibility and to a degree the blindness that can come with MDI?
• Are you a long standing or well experienced T1D with control and a view to maintain the control and avoid complications well into the future?
• Are you new to T1D and looking for a management method that will be as like to normal function?
• Are you a parent trying to work out what is going to suit your little one the best to ensure that they can minimise the risk of complications?

For me some 8 years ago I was 16 years in to my journey. I was living on 5 injections a day and calculating my food intake by exchanges. I was a slave to feeding my insulin rather than have my insulin to what my body requires. I was tired of the needles, I was tired of managing my intake by knowing what I had to have hours before hand so that I could have my insulin 30 minutes prior to eating.

All of the above stages have elements to them that will have a dramatic effect on what decision will be made.

As with all methods of controlling T1D pumping can in fact be a method that can be stable and also have quick change if not paid attention to. By using short acting insulin only, you can have something go wrong and  it can change your BSL in minutes. This is not to say that on MDI with a long acting insulin this won't happen and to tell you the truth the worst hypo's that I have had is when I was on MDI with a long acting insulin. I suppose that with the short acting insulin you can make changes and have them applied within minutes and hours rather than days.

If you have gotten to this point and you think pumping, which is the most advanced method of T1D management, is something that should be considered (which I completely agree with) then you need to take the following into account -

• What type of pumps are there? Well in our market there are 3 on the market that can be prescribed. All of which do the same basic job however, and this is where you need to do the research and understand about the support and company behind them. A pump is only as good as the support that goes along with them. Do not expect that each of the companies are the same. Do your homework.
• What functions do you and your health team think are important? Is it small dosage ability for your basal rates, is it the ability to connect a CGM to the pump to help with a little bit of automation and reassurance through out the day or is it a combination of all the little things that make up the pump.
• How do you work with your Team? Do you wait until your 3 monthly appointment before you review your BSL's and rates or do you expect the information to be available to you and your team no matter the day or even where you are in the world. For me this is a big thing, I download my pump and that data is available for my team to review whether I am there with them or I am in the other side if the world. This allows me the speak to my team and tweak my settings to ensure a maintainable range is kept.
• Is it more about the aesthetics? Can you read the screen, can you navigate through the screens in an easy manner and would it be in user friendly terminology?
• Does your endocrinologist have a vested interest in understanding how your pump can work for you to ensure your life immediately and in the future will be better. Even though I was on a Medtronic pump for nearly 8 years prior to my daughter being diagnosed and knowing that I wanted her on a pump I still asked her medical team for their professional opinion on what they thought was best. Of course I could have argued with them if they didn't agree me as to the best but that wasn't to happen.
• Is it a concern that you will have a device attached to you 24 hours a day, 7 days a week? Well this is an interesting question as there are many like situations. My wife is not a T1D however she has a device that I would say is attached to her 24x7 and is rarely more than a meter away from her. The difference is that I think she can live with out her phone compared to me not living with out my pump. It is a change to have a device attached however the pro's quickly outweigh the con's and within days you live like it isn't there. My daughter, since seeing me with mine her whole life never second guessed her pump and to her now it is normal.
• Can you teach old dogs new tricks? It's never too late to make a change and if you have gotten through 10's of years on MDI and have little to no complications then pumping could be a management style to get you through the next 10's of years minimising the possibility through hard work of complications.
• The pump is not a cure! This was one of the first things my endo told me. It is a management tool that if abused can be dangerousness but used in the purpose of why it was made, have awareness of your body and have the drive to always want the best for yourself and the pump will be a shimmer of normality back in your life.

For me and my daughter the pump has been a welcome addition to life. It has put flexibility and control back in our hands. It was the best decision I could have ever made in my years so far as a T1D. I understand that people could be adverse to the change but if there is an incling that any one point above has made you think then at least ask the question and investigate. Do not be afraid to make a change for the good.

The day it all began - Diaversary

Today I have mixed and strange feelings, I wonder to myself whether or not I need to be happy, excited or angry and confused. Today is the eve of what many call their "Diaversary". This is the first time in 24 years, and it is because I am a lot more thoughtful since my daughters diagnosis, that I have been able to sit back and recognise the day that it happened some 23 years and 364 days ago.

Is it something you celebrate? Is it something like a birthday? Or is a time to reflect on what has been done and what will be done?

For me I think it is the later, reflect on achievements made through the years, celebrate that life still comes first and that T1 has not caused major problems. Celebrate on the advancements in management and the ability I have had to change to make my life better.

Before 1921 there was no management, there was no insulin to keep us alive. Now that may seem like a long time ago however I then put it in perspective with the people around me. My grandmother was roughly born around the same time that insulin was found. My grandmother is still alive now and to me I would say that modern management of T1D has been available for only 2 generations. I don't know about you but that doesn't seem like a long time to me at all.

Then to think of the advancements from glass syringes to disposable syringes, no blood test equipment to machines that take 5 seconds to give you an accurate reading, urine base ketone tests to once again blood machines to calculate ketones and probably the biggest change is the modern day insulin pumps and CGM sensors. I saw a photo a photo the other day of the first insulin pump and it resembled a ghost busters back pack. To think we have moved from that to a small pager device that has the ability to mimic the natural body's insulin production. This I am thankful for. Not only for me but most for my daughter. If I can maintain tight control then maybe just maybe she can also learn to keep any complications at bay.

Now that we have looked behind us now it is time to get excited of what could be in front. If in 93 years we can go from death to having the ability to manage this disease with a little pager then what is coming at us in the near future. With the rapid advancement of technology I would have to say that the next breakthrough in management is only around the corner. Whether it is a full blown artificial pancreas that is able to determine the BSL and then give either insulin or glucagon to keep it in range or if there are elements of automated predictability then anything is welcome. Anything that will help maintain levels to keep the other hidden complications at bay is always going to be welcome at my door.

So in reflection of this post tomorrow is my "Diaversary" and I will celebrate who I am and what I have become with T1D on my side and look toward tomorrow for things that will make the next 24 years as successful as the last.

Personal training begins

A few months ago I wrote an entry on trying to loose weight and how when eating the right portions and exercising  alone was difficult and scary in the point that the unexpected lows and the management of insulin levels as your body needs less was and is difficult. You never want the low to hit in the middle of the night that is for sure.

As this is the case I decided that this time I will try a different tactic and use a personal trainer. It was also timely that I saw online that there was a personal trainer who was looking to make the next step and become a personal trainer that is qualified to train people with critical diseases or problems such as T1. To me I didn't even know this existed so I thought it should be interesting to see what they know and what they could do differently.

On MDI I lost 30 odd Kilograms at one point and in doing so I had some of the worst hypo's I have ever had. One day would be fine the next would be the body saying your now loosing weight so you don't need so much insulin. To which case I would adjust what I was having but where I would try and preempt it I would run high and just feel terrible. It was great to loose weight but it was a scary time.

Now on a pump with a CGM sensor it is very interesting to see the impact of what I am going to put myself through.

I get to the gym on my first session dreading what was to come and I get the information that we are going to want to work out to bun fat and not glucose. I had never really thought of this before, and probably it was just naive  of me, but to do this it meant we would work on the large mussel groups with heavy weights with high repetition. As I like to think that the people who are the specialists in their profession know what is best I did the work out.

The weight section of the work out consisted of dead lifts, squats, squat jumps and bench press. The cardio section, even though it was a very small fast bursts, was done on a rope pull machine. Like short sprints it was 2 minutes of fast paced repetition.

By the end of the sprints it was then onto the treadmill for a cool down walk to ensure my heart rate lowered. I can safely say that by this stage I felt like vomiting from the lactic acid flowing through my limbs and it felt like my legs were jelly.  It was a hell of a work out.

Now the interesting part. Usually when I do a cardio workout my BSL will rise and the 2 or so hours later it will drop dramatically. Through out my workout and because I was wearing my Medtronic CGM I was able to monitor what was happening and anytime through the hour. I was shocked to see that through out the hour my BSL remained roughly the same. I had no rise and even more importantly I had no major drop even hours after. I was amazed and I felt great.

I have continued to work out and wear my CGM and I have had consistent results. Heavy weights with high repetition saw stable BSL. There had been a number sessions since where we incorporated sprints on the bike along with the rope pull machine in the one session. As this was multiple cardio elements I did notice on my CGM hours after the workouts the drops in BSL occurred.

Moving forward there is a fine line between burning fat instead of glucose but if nothing else I have another element to use in the war with T1D and how I can just manage what I can to get the results I need.

Another's perspective ##Guest Writer##

Today I have asked for my wife's  views on living with 2 T1D's. Her perspective from living just with me compared to now that she has a daughter with it and the responsibility to keep her alive is ours.

I knew Gareth for years before we got together. I at first did not even know he has T1d. It was only when on one night I was babysitting Ella and Lucy (his daughters from a previous marriage) when I noticed these strange vial things in his fridge. On closer inspection I found that they were insulin and that the strange thing he wore on his pants was in fact not a pager after all! My first experience with his T1d was a few weeks after we got together. He always managed his diabetes on his own, never really discussed it, he just did it. But on this one occasion, gareth got gastro. He turned not only into the exorcist but a zombie. He was passing out and in between consciousness, he told me he needed sugar and quick! I remember running down the stairs and grabbing cordial as I knew he couldn't stomach anything solid so I would give this a go. It went down and it came straight back up. I was terrified and even though he mumbled he didn't want to go to hospital, I managed to limp him to the car and to emergency. Which luckily, was a 2 minute drive away. I knew nothing of the glucagon injection, nothing. It was frightening and luckily never happened again. Gareth continued to look after his diabetes himself and was always well controlled so very rarely ever needed my help except for grabbing the jelly beans every now and then or by me telling him his breath smelt sweet, could he be high?
When I fell pregnant with Shiloh I think I may have thought about her getting T1d once, maybe twice. Gareth was the only one in his family with it, and Ella and Lucy didn't have it so why would my baby get it, right?
Shiloh came into the world in a less than glamouros way. She was stuck, and even though she was only 2cm away, cutting, forceps and vacuum failed. So she was born by emergency c-section after both our hearts were not beating correctly. She was a happy baby but earned her frequent flyer points at the doctors. She first got severe jaundice. The doctors said this was from the trauma to her head at birth (forceps and vacuum). She then got a very rare eye infection which took a lot to treat and was again caused by birth. At 3 weeks old I noticed her stools resembled that of a lactose intolerant. I worked in child care for many years so knew what it looked like. The doctors kept brushing it off. Kept saying it was colic. But her pain got worse. From birth she very rarely slept. As a newborn she would sleep 20 minutes and sometimes that was for the whole day. At night she would wake every half hour. Shiloh also got terrible eczema. I put her on soy formula and the pains stopped. Finally the doctors agreed that she was lactose intollerant. However the sleeping pattern continued, the eczema slowly improved. Shiloh also suffered a lot from colds, ear infections. So much that this helped us to decide to move to sunny Queensland. Where in fact her health improved until she was 2 and a half years old.
At the end of August 2013, I noticed that shiloh's eyes were more darker than usual (she always was a little darker under the eyes) she was grizzly, hard to reason with and her appetite which usually resembled that of a sparrow, increased dramatically. So did all the cups of water she was scoffing. I mentioned this to family and friends, as by now T1d was slightly in the back of my mind. They all said she was probably growing which I agreed once I had spoken to gareth and he thought the same thing. I now know he did not want to believe it was T1d and found it easier to pretend it was something different. However, on September 4th we went out shopping and to lunch with my sister in law who had just flown in from Melbourne. Shiloh was sweaty and demanding more and more drinks of water. I mentioned t1d to gareth at lunch. Who agreed to test her once we got home. By then the wet nappies had started. Every 10 minutes we were going through a saturated nappy!! I held her while he tested her. And we got the answer we were dreading, "HI".
The look on Gareth's face said it all. He rushed to wash her hands and re test while I sat staring at the floor. All I could think was "no it can't be, she must have sugar on her fingers" but the re test was again read, "HI".
We rushed to our GP, just in case our tester was broken. Please god let the tester be broken. The doctor looked at us and she said "rush her straight to emergency, I think you are right. I think she is type 1". We cried all the way to the royal children's. I sat in the back with my little girl. Holding her hand, kissing her, telling her she would be ok. It would all be ok. And all she did was wipe my tears away and tell me not to cry. My heart was beyond broken. Here was my little girl, sick, exhausted, feeling so poorly but all she cared about was me and her daddy crying. And I swore right then, that I would fight this disease with my last breath. I stopped crying, I would not let it break me today or any other day! We walked into the hospital while we all held her down so they could take blood and put a drip in. She was so upset she slapped my face and I wanted to break down, I wanted to scream and cry, but I didn't. I had to stay strong in front of her and I did. I was her warrior now. She had to see my brave face. The doctors confirmed what we had already accepted. Our beautiful baby had T1d. An autoimmune disease that she would have forever unless a cure was found. I remember smiling and telling her she was just like daddy and then I would go to the toilets and sit on the floor, rocking and crying.
The injections were the hardest. We had an amazing diabetic educator, Karen shann, who to this day remains our saving grace. But the injections for a fussy eating toddler were crazy. She would get hungry but could not eat anything else as she had already eaten her max carb ratio until the next injection. She would want a bottle of milk before bed but the nurses would say no. Shiloh always had milk to go to sleep!!! This created so much more stress and on the 2 nd day of diagnosis, Karen worked with the wonderful people at Medtronic and Shiloh got an insulin pump! God bless the pump!! Shiloh took to the pump like a pro. She matched her daddy and she was happy.
I noticed too that as soon as Shiloh had insulin, she instantly looked better than she did in a long time. She also slept all night!!!! Which she never ever did before diagnosis. She was also not as angry as she used to be and so much happier in herself. We have often discussed with our diabetic team that perhaps, Shiloh was pre diabetic. And I believe this to be the case. What other kid would fail sleep school?
Shiloh has excepted T1d better than all of us, including the doctors, could ever have imagined.
But have I?
Well.......... I soldiered on. At first I tested her 15-20 times a day. I panicked at every moment.  It was mummy against this T1d during the day by herself while daddy works. I had, and still do, have so much to learn. It's never ending learning with T1d. But i learnt to ease up. and I stay strong, but there are those days. Those days Shiloh gets too high and I blame myself for not bolusing enough. For giving her that treat. It's my fault. MY FAULT.
It's my fault Shiloh went to low. I over corrected. God I could have killed her!
Its my fault she cries at set chances. It should have been me! give this disease to me, not my little baby!!!! I understood for the first time, what Gareth was dealing with. somedays my mind just cant take anymore information or frustration and i just snap!!
Most nights I admit, I wake in the early hours and as Shiloh has slept with us since diagnosis (a mummy coping mechanism) I rest with my hand on her belly to make sure she is breathing. I then watch for Gareth's breath for now I have the understanding I also have the fear of what can happen to him as well.
Sometimes I cry. I cry alot. For all the difficulties my little girl is going to have to face with T1d.
Kindergarten, school, sports, illnesses, health problems etc. and what will happen when it's no longer up to mummy and daddy to keep her alive? When she is responsible for it herself? Will she rebel against it? Oh god, the thought of this brings many tears now. And as I write this, in the bath on this cold Sunday evening I can hear her begging and crying to her dad for no 1,2,3 (this is what she calls set changes). And my heart cries for our beautiful, strong, baby girl.
But then I think, that's just it!! Shiloh is strong!!! She is healthy besides her pancreas. My little girl is a force to be reckond with. And she learnt from us. Her warriors! We will fight T1d until our last breaths. Together we will not let this beat us!!!

Diabetes Burnout!

I like this line from another post I read "would you accept a job that you worked 7 days a week, 24 hours a day with no annual leave or even sick days?" I know there is not an inch of me that would say yes but each one of us with T1D has exactly that, an endless job that does get the best of us sometimes and you fall into a state where you are tired, exhausted and you really don't want to or can't explain why this is happening to you.

I have talked of this before but today I see the other side, I see a burnout from a carer of a type one toddler and me a T1 adult. It has only been 9 months that my wife has needed understand this battle and because it is very much second nature to me I forget that it can be scary, daunting, overwhelming, confusing  and out right unfair on those that don't know what the T1 is feeling but has the complete responsibility for management in ultimately keeping someone alive through the actions they do. Don't get me wrong I still have all these feelings but I suppose to understand the intricacies of T1 has allowed me a slightly more process driven head in managing what has to happen. In one way removing some of the emotion if you like.

My wife has adapted and taken on a massive amount of information in a very short time, this information is not just to do a job 24x7 but to do the job while being a teacher, role model, doctor, nurse, dietitian and biggest of a a mother. The emotional elements that come with the last in the list are the driving parts that allow the rest to fit into place. This is a remarkable feet that I cherish each and every day.

Today I see burnout not as I usually do. Not from me having enough but from my wife who is frustrated because numbers are not perfect, because sometimes there just isn't an answer, because to not test at night (which would mean nearly 8 hour sleep) is like saying we will run the tight rope and hope that everything is ok and we all wake in the morning and because we allow emotion to take over from procedure. This is human nature and is in each and every day and needs to be there but as doctors do they remove emotion to ensure the logical path is taken rather than the emotional one.

This burnout is difficult as it is all encompassing and takes you out at the core of your humanity. We will never stop no matter the burnout we will be in because it is our daughters life that is at stake. We will learn together and I hope as someone that has lived this battle that I am not only able to share with my daughter some do's and don'ts but also help my wife with information that will hopefully just make things a little less stressful. I was going to say easier but I honestly do not think any part of T1D is easy and to say so would be to disrespect what we put into each and every day.

I give thanks that my wife has been so accepting of not only her babies new life but has now also understood what I have been doing for so many years behind closed doors if you like. Prior to my daughter I managed myself and kept the nuts and bolts to myself because other than fixing a terrible high or low all the other things could stay with me. Now that we progress down this road she is applying what she has learnt on me also. For example last night, during an episode of extreme tiredness from my MS, I groggily woke up to her pricking my finger to see why my pump was beeping at me. She subsequently found I was down to around 4 so she shoved some sugar into my mouth and made me wake up enough to know what was happening. This isn't something I have asked of her she has done it out of awareness and care and I love her for it.

This disease is a battle not only to the T1D but those all around. Those who care enough to know what is happening and those who want to take the time to take on another full time or part time job. Next time you see or meeting a T1D aknowledge those who spend every moment of there life managing, learning and adapting to ensure there loved ones will continue fighting to become some of the strongest people in the world.