Today's topic.....lets talk about changes in one of two ways. Either what you'd most like to see change about diabetes. Or reflect back on some changes that you or your loved one has seen.
Finally....one that I can write with ease.
Lets see......I don't know what it is like in other parts of the world but here in the UK we have a real problem surrounding people's understanding of the different between type 1 and type 2 diabetes. The blame I believe falls mainly at the feet of the media and really poor journalism. Let me give you an example, there is a newspaper front page headline today "Eating eggs reduces the risk of developing diabetes." Anyone with any knowledge on the subject will know that they are talking about type 2 diabetes as type 1 is an autoimmune condition. But, what about all those people that haven't that underpinning knowledge? Lets face it unless you deal with it on a daily basis you have no reason to know, and it would be ignorant of me to think that you should know, I mean what makes type 1 diabetes so special that the whole world should know about it? The problem is though is that assumptions are made about people with type 1 and how they came to develop it.
"You must have given your child too many sweets"
"They are overweight"
"They don't get enough exercise"
"You didn't breast feed your baby".
You get the idea, as if us parents of diabetic children don't feel bad enough!
Now if I'm honest I don't often get upset by such comments but I know plenty of people that do. If anyone says anything to me that is factually incorrect I will inform them otherwise, it's not their fault they have been misinformed.
There are calls to change the names but I personally don't think that will do much. What it needs is a little more thought when reporting. It's only a few extra words and it will make the whole world of difference.
The only real thing that I would love to see changed is for people to become more aware of the symptoms, and realise how deadly undiagnosed type 1 diabetes really is. If you were to ask any parent in the UK what the symptoms of meningitis were they would be able to tell you. It's in the red book that is given to new parents when they have their baby. It's the main condition that parents here are scared of, and it kills, but so does type 1 diabetes. Statistics also show that more children are diagnosed with type 1 each year than meningitis and its on the increase in children under the age of 5. It's a scary thought.
Thursday, 14 May 2015
Wednesday, 13 May 2015
Clean it Out.
Here we are with day 3...What is in your diabetes closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging onto.
Wow, these topics are really getting the old grey matter working.....
Let's see, our medicine cupboard is fairly packed, we have diabetic supplies for the husband. He is on mdi, so we have needles, test strips and lancets for him. The boy pumps, so we have test strips (glucose and ketones), insulin reservoirs, cannulas and batteries. I'm also quite sure in the back somewhere is some glucogel. Also in this cupboard is all the 'other' supplies that you need when you have children. Calpol, plasters, cough mixture, head lice lotion (ewww) the lid is endless. Oh there is probably some hair dye in there somewhere as well.
Shoved in the back of the top shelf is probably every glucose meter known to man. We have loads! None of them work, we have no test strips for them, the finger prickers have vanished, I don't know why we keep them. Also in the cupboard is a fairly large mason jar almost full with used test strips! Don't ask!!! Actually the reason we have this is quite good. I decided to try and get a visual representation of how many times in a year they both test. I started collecting them in January 2014, I'm not really sure where I'm going with it now.
The fridge isn't much better, we have four different insulins all in different forms....we have vials, pen cartridges and pre filled pens. We also have the glycogen injection in there.
Don't get me started on the test strips that don't manage to find their way into the jar. I've found them in my bag, beside my bed, in the car, the garden, the driveway, actually name a place and I've probably found them there!!
As for emotionally, I suppose I need to try and get rid of my anger towards my husband at times. I micromanage my sons diabetes. I weigh food, counts carbs, correct when needed, I work hard! The husband on the other hand doesn't eat properly, has no carb ratios, is not under the hospital, guesses insulin doses and his HbA1c comes in lower!!!! It's not fair!!!
Wow, these topics are really getting the old grey matter working.....
Let's see, our medicine cupboard is fairly packed, we have diabetic supplies for the husband. He is on mdi, so we have needles, test strips and lancets for him. The boy pumps, so we have test strips (glucose and ketones), insulin reservoirs, cannulas and batteries. I'm also quite sure in the back somewhere is some glucogel. Also in this cupboard is all the 'other' supplies that you need when you have children. Calpol, plasters, cough mixture, head lice lotion (ewww) the lid is endless. Oh there is probably some hair dye in there somewhere as well.
Shoved in the back of the top shelf is probably every glucose meter known to man. We have loads! None of them work, we have no test strips for them, the finger prickers have vanished, I don't know why we keep them. Also in the cupboard is a fairly large mason jar almost full with used test strips! Don't ask!!! Actually the reason we have this is quite good. I decided to try and get a visual representation of how many times in a year they both test. I started collecting them in January 2014, I'm not really sure where I'm going with it now.
The fridge isn't much better, we have four different insulins all in different forms....we have vials, pen cartridges and pre filled pens. We also have the glycogen injection in there.
Don't get me started on the test strips that don't manage to find their way into the jar. I've found them in my bag, beside my bed, in the car, the garden, the driveway, actually name a place and I've probably found them there!!
As for emotionally, I suppose I need to try and get rid of my anger towards my husband at times. I micromanage my sons diabetes. I weigh food, counts carbs, correct when needed, I work hard! The husband on the other hand doesn't eat properly, has no carb ratios, is not under the hospital, guesses insulin doses and his HbA1c comes in lower!!!! It's not fair!!!
Tuesday, 12 May 2015
Keep it to Yourself......
Day 2 of Diabetes Blog Week....
Well, I thought yesterday's topic was challenging but today's has proved even more difficult. So much so that the day is almost over and I'm only just writing it. Better late than never I guess!
Anyhow today's topic is 'Keep it to Yourself'. This is meant to be about the stories that I will never post online, or things that I don't share with family and friends. The thing is I'm fairly open about my sons diabetes. I don't really hide anything about his condition. If anyone asks me anything I will answer truthfully even if it's not pleasant, I think of it as an opportunity to educate. Knowledge is power!
If anything I suppose the thing I keep hidden is how his diabetes affects me personally. My husband was diagnosed before we got married, he was 23, so I had lived with diabetes in our relationship. When my son was diagnosed I can honestly say I was shell shocked. I mean I consider myself fairly clued up yet I missed most of the signs. Thankfully my husband and I spotted the thirst and as we had the equipment at home he was diagnosed without any real drama. There was so much to learn, taking care of a child with diabetes is completely different to a husband.
To the outside world, the people that know me in real life and online, I take it all in my stride, I'm laid back and don't stress too much about it. I can't change it, I can't take it away, it is what it is. Here's my secret I have days when I feel like I can't take anymore. When the glucose levels are all over the place, my son is upset and hates diabetes and the whole world, my heart breaks just a little bit more. I suffer from depression, I have been on anti depressants for the last four years. I have days where it takes everything I've got to get up and get through the day. The biggest thing is I think, is I have control issues, I need things to be perfect, and this condition doesn't really allow 'perfect'. I struggle with that the most, my coping mechanisms are not great but that's a whole other story.
Well, I thought yesterday's topic was challenging but today's has proved even more difficult. So much so that the day is almost over and I'm only just writing it. Better late than never I guess!
Anyhow today's topic is 'Keep it to Yourself'. This is meant to be about the stories that I will never post online, or things that I don't share with family and friends. The thing is I'm fairly open about my sons diabetes. I don't really hide anything about his condition. If anyone asks me anything I will answer truthfully even if it's not pleasant, I think of it as an opportunity to educate. Knowledge is power!
If anything I suppose the thing I keep hidden is how his diabetes affects me personally. My husband was diagnosed before we got married, he was 23, so I had lived with diabetes in our relationship. When my son was diagnosed I can honestly say I was shell shocked. I mean I consider myself fairly clued up yet I missed most of the signs. Thankfully my husband and I spotted the thirst and as we had the equipment at home he was diagnosed without any real drama. There was so much to learn, taking care of a child with diabetes is completely different to a husband.
To the outside world, the people that know me in real life and online, I take it all in my stride, I'm laid back and don't stress too much about it. I can't change it, I can't take it away, it is what it is. Here's my secret I have days when I feel like I can't take anymore. When the glucose levels are all over the place, my son is upset and hates diabetes and the whole world, my heart breaks just a little bit more. I suffer from depression, I have been on anti depressants for the last four years. I have days where it takes everything I've got to get up and get through the day. The biggest thing is I think, is I have control issues, I need things to be perfect, and this condition doesn't really allow 'perfect'. I struggle with that the most, my coping mechanisms are not great but that's a whole other story.
Monday, 11 May 2015
I can.........
This is my first blog as part of 'Diabetes Blog Week', I don't actually know how I stumbled across it, but here I am. The first topic is 'I can....' and it is looking at the positive side of our lives living with diabetes. Straight away I am stuck, it's tricky as I write about being a parent of a child with type 1 diabetes, I don't have diabetes myself.
I try really hard not to let this condition get in the way of my sons day to day life. He is 10 years old, he needs to be able to live as a 10 year old boy. He needs to be able to play football, run around outside, wrestle with his sisters, and for the most part he does. At the moment it's my job to worry about all things diabetes not his.
I have always said to him that there is nothing he can't do if he really wants to, yes having diabetes sometimes complicates things, but with forward planning most things are possible. He amazes everyday, especially when he is at school. When he was first diagnosed I trawled the Internet for information, I joined forums to find families like mine. The biggest thing that stood out for me was the talk of problems at school. It wasn't just would he be looked after well enough, he wasn't, and still isn't always hypo aware. The thing that jumped out at me more was that many of the children had 'statements', they had 1 to 1 help, they struggled at school. This was something I hadn't planned on, I didn't want him to be labelled as special needs.
Samuel does extremely well at school, at every parents evening I get told that he is above where he should be, that he doesn't let his diabetes get in the way. He has no issues with concentrating, even when his levels are out of range. He loves all aspects of learning, he also has a great bunch of friends around him, they have all accepted that diabetes is part of who he is, they look out for him.
I suppose that a positive of him having diabetes is that every three months he gets a MOT, a health check. He is weighed, his height is measured, his blood pressure is checked, and once a year he has a whole host of bloods taken. My three girls don't get these checks.
Diabetes has also given us a great network of friends both online and in real life. They 'get it', day or night you can always find someone online with advice. They are a godsend, especially in the early days.
For me personally, diabetes has given me the ability to run. Before he was diagnosed I was overweight, unfit, and could not run at all. I couldn't run on a treadmill for more than a length of a song, and I couldn't see why anyone would do it for fun!! I entered the London Marathon.....don't ask, and ended up with a place on the JDRF team. I ran it (I use the term run very loosely) in 2010. Since then I have completed 1 ultra marathon, 8 full marathons, several half marathons and countless 10k and 5k races.
I've lost weight and I'm fitter now at the grand old age of 40 than I have ever been.
We have a lot to be thankful for.
I try really hard not to let this condition get in the way of my sons day to day life. He is 10 years old, he needs to be able to live as a 10 year old boy. He needs to be able to play football, run around outside, wrestle with his sisters, and for the most part he does. At the moment it's my job to worry about all things diabetes not his.
I have always said to him that there is nothing he can't do if he really wants to, yes having diabetes sometimes complicates things, but with forward planning most things are possible. He amazes everyday, especially when he is at school. When he was first diagnosed I trawled the Internet for information, I joined forums to find families like mine. The biggest thing that stood out for me was the talk of problems at school. It wasn't just would he be looked after well enough, he wasn't, and still isn't always hypo aware. The thing that jumped out at me more was that many of the children had 'statements', they had 1 to 1 help, they struggled at school. This was something I hadn't planned on, I didn't want him to be labelled as special needs.
Samuel does extremely well at school, at every parents evening I get told that he is above where he should be, that he doesn't let his diabetes get in the way. He has no issues with concentrating, even when his levels are out of range. He loves all aspects of learning, he also has a great bunch of friends around him, they have all accepted that diabetes is part of who he is, they look out for him.
I suppose that a positive of him having diabetes is that every three months he gets a MOT, a health check. He is weighed, his height is measured, his blood pressure is checked, and once a year he has a whole host of bloods taken. My three girls don't get these checks.
Diabetes has also given us a great network of friends both online and in real life. They 'get it', day or night you can always find someone online with advice. They are a godsend, especially in the early days.
For me personally, diabetes has given me the ability to run. Before he was diagnosed I was overweight, unfit, and could not run at all. I couldn't run on a treadmill for more than a length of a song, and I couldn't see why anyone would do it for fun!! I entered the London Marathon.....don't ask, and ended up with a place on the JDRF team. I ran it (I use the term run very loosely) in 2010. Since then I have completed 1 ultra marathon, 8 full marathons, several half marathons and countless 10k and 5k races.
I've lost weight and I'm fitter now at the grand old age of 40 than I have ever been.
We have a lot to be thankful for.
Saturday, 9 May 2015
The First Sleepover
The day has arrived, I've been waiting for this day since Samuel was diagnosed in 2009. It's the day that every parent of a child with type1 diabetes dreads.........'the first sleepover!!'
Now, I'm the first to admit I'm fairly laid back when it comes to Samuels diabetes. He doesn't get asked often, but when he is invited to his friends for dinner or to play I always say yes. I find out before hand what dinner will be and I work out the carbs so that Samuel can enter into his pump.
Last year he went to the cinema for a friends birthday and he had a great time. There was a lot of carb guessing on my part but it went without a hitch. The way I see it these are isolated incidents, so if it results in some high readings then that's ok. It not all the time and I don't want him missing out on fun times with his friends, a bit of boy time. Remember he lives with three sisters, there isn't a lot of boy time in this house!
Samuel has been looking forward to this for the last week or so.......I haven't!
He got up this morning and packed his bag straight away as I'm sure all the other boys have. We have the onesie, the toothbrush, the clean underwear, the pillow and quilt..... Then of course the blood glucose machine, the ketone machine, spare strips for both machines, juice if he goes low. I did a set change last night and changed the battery in the pump. I have complete faith in mum, he has been to this particular friends a few times. I think we are set!
Samuel will have a great time, I know he will..... I on the other hand will probably be a nervous wreck the whole night, and a few more grey hairs by morning.
Now, I'm the first to admit I'm fairly laid back when it comes to Samuels diabetes. He doesn't get asked often, but when he is invited to his friends for dinner or to play I always say yes. I find out before hand what dinner will be and I work out the carbs so that Samuel can enter into his pump.
Last year he went to the cinema for a friends birthday and he had a great time. There was a lot of carb guessing on my part but it went without a hitch. The way I see it these are isolated incidents, so if it results in some high readings then that's ok. It not all the time and I don't want him missing out on fun times with his friends, a bit of boy time. Remember he lives with three sisters, there isn't a lot of boy time in this house!
Samuel has been looking forward to this for the last week or so.......I haven't!
He got up this morning and packed his bag straight away as I'm sure all the other boys have. We have the onesie, the toothbrush, the clean underwear, the pillow and quilt..... Then of course the blood glucose machine, the ketone machine, spare strips for both machines, juice if he goes low. I did a set change last night and changed the battery in the pump. I have complete faith in mum, he has been to this particular friends a few times. I think we are set!
Samuel will have a great time, I know he will..... I on the other hand will probably be a nervous wreck the whole night, and a few more grey hairs by morning.
Wednesday, 4 March 2015
A marvellous man.
I can't believe we are now in March of 2015, where does the time go? I haven't posted for an age!
Samuel had his quarterly checkup, we had to cancel the one before Christmas as it clashed with a school trip to the science museum, lets face it that is far more exciting to a 10 year old. We hadn't been since September, and during that time we had had the winter sickness bug, the school holidays, awful bg levels, and of course Christmas itself.
We get to clinic and we are both excited by this as we were meeting up with Samuels pump buddy, the gorgeous Kita and her equally gorgeous mum Magda. We hadn't managed to link up our appointments for ages. Samuels height and weight had both gone up, height by 3cms and he had put on 4lb. Ahhhhh it all becomes clear.. .that is why we have had awful levels. Samuel is called in to see his consultant. This man is a hero among families of children with diabetes. Prof Peter Hindmarsh, otherwise affectionately known as 'The Prof' . He takes one look at his pump and states all Samuels settings are out of date and need changing. Carb to insulin ratio adjusted, Basel rates adjusted, correction dose adjusted. We had a quick chat about the residential trip that is coming up and we were on our way. Oh, side point for those in the know the HbA1c came down!!!
I can honestly say in the four weeks since this appointment Samuels levels have been amazing they have never been so good The Prof is truly an amazing man. The other reason I love this man is that the appointments are all about Samuel, he takes the time to talk to Samuel. I get the boring letters through the post stating all the medical stuff, Samuel gets a letter thanking him for going to clinic and that he hopes he enjoyed the rest of the day, it is all very personal.
Ask anyone who has there child seen at UCLH by this man, or actually anyone who has a child with type 1 diabetes, about him and they will all say the same.
Samuel had his quarterly checkup, we had to cancel the one before Christmas as it clashed with a school trip to the science museum, lets face it that is far more exciting to a 10 year old. We hadn't been since September, and during that time we had had the winter sickness bug, the school holidays, awful bg levels, and of course Christmas itself.
We get to clinic and we are both excited by this as we were meeting up with Samuels pump buddy, the gorgeous Kita and her equally gorgeous mum Magda. We hadn't managed to link up our appointments for ages. Samuels height and weight had both gone up, height by 3cms and he had put on 4lb. Ahhhhh it all becomes clear.. .that is why we have had awful levels. Samuel is called in to see his consultant. This man is a hero among families of children with diabetes. Prof Peter Hindmarsh, otherwise affectionately known as 'The Prof' . He takes one look at his pump and states all Samuels settings are out of date and need changing. Carb to insulin ratio adjusted, Basel rates adjusted, correction dose adjusted. We had a quick chat about the residential trip that is coming up and we were on our way. Oh, side point for those in the know the HbA1c came down!!!
I can honestly say in the four weeks since this appointment Samuels levels have been amazing they have never been so good The Prof is truly an amazing man. The other reason I love this man is that the appointments are all about Samuel, he takes the time to talk to Samuel. I get the boring letters through the post stating all the medical stuff, Samuel gets a letter thanking him for going to clinic and that he hopes he enjoyed the rest of the day, it is all very personal.
Ask anyone who has there child seen at UCLH by this man, or actually anyone who has a child with type 1 diabetes, about him and they will all say the same.
Thursday, 13 November 2014
How God selects......
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