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.
Wednesday, 30 October 2013
Tuesday, 29 October 2013
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.
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.
Friday, 25 October 2013
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.
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.
Thursday, 24 October 2013
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.
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.
Saturday, 19 October 2013
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?
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?
Monday, 14 October 2013
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.
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.
Sunday, 13 October 2013
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.
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.
Friday, 11 October 2013
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.
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.
Wednesday, 9 October 2013
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.
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.
Monday, 7 October 2013
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 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.
Wednesday, 2 October 2013
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.
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.
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