Pretty much everyone will be aware that Children In Need is on Friday. This annual event is broadcast across the country with many celebrities taking part.
Friday 14th November is also World Diabetes Day, a very important date in the calendars of families who are affected by type 1 diabetes. This is the birthday of Dr Frederick Banting....who is that? This is the great man who discovered insulin. It's important to point out that insulin is NOT a cure for type 1 diabetes, it's life support. Without it a person with type 1 diabetes will die! FACT.
The whole month of November is diabetes awareness month, how many of you knew? We know that October is breast cancer awareness month, and November is taken over by 'movember' to raise awareness for prostate cancer, but diabetes awareness?
I suppose really the point of this post is that our type 1 children are 'Children in Need' they live with this life threatening condition day in, day out. Currently there is no cure, hopefully one day this will change.
Hope is in a Cure x
Tuesday, 11 November 2014
Saturday, 15 March 2014
5 years in......
Diaversary.......diagnosis day........d day, whatever you call it....we call it diabetic birthday, today is that day.
5 years ago today diabetes entered our lives again, Samuel was 4. If you follow my blog you will know this already but for those who are new to it I will give a quick recap. My husband was diagnosed at the age of 22, so thankfully when Samuel started showing signs we knew what we were dealing with. That said it was still a huge shock to us, and it was still a lot to take in. He was never admitted into hospital and he never got the chance to get really sick, for that I will always be thankful as many are not so lucky.
So here we are.... Lots has changed, we move from twice daily injections, to multiple daily injections and now the pump. Have things got easier? The short answer is no, nothing is ever easy where type 1 diabetes is concerned. What does happen though is it becomes normal, well normal to us anyway, we are used to carb counting, insulin measuring and blood glucose testing. We have gained great support from the CWD online community, we have met some wonderful people and I'm sure this will carry on for many years to come.
However, this year is tinged with sadness, this year we have tipped over and Samuel has been diabetic longer than he hasn't. He has spent more than half his life injecting insulin, more than half his life counting carbs and measuring bg levels, and if I'm honest it sucks. But this is the hand we have been dealt, Samuel is an awesome young man, he is shining at school and he doesn't let his condition stop him from doing anything so actually I think we are really quite lucky, as it really could be a whole lot worse.
5 years ago today diabetes entered our lives again, Samuel was 4. If you follow my blog you will know this already but for those who are new to it I will give a quick recap. My husband was diagnosed at the age of 22, so thankfully when Samuel started showing signs we knew what we were dealing with. That said it was still a huge shock to us, and it was still a lot to take in. He was never admitted into hospital and he never got the chance to get really sick, for that I will always be thankful as many are not so lucky.
So here we are.... Lots has changed, we move from twice daily injections, to multiple daily injections and now the pump. Have things got easier? The short answer is no, nothing is ever easy where type 1 diabetes is concerned. What does happen though is it becomes normal, well normal to us anyway, we are used to carb counting, insulin measuring and blood glucose testing. We have gained great support from the CWD online community, we have met some wonderful people and I'm sure this will carry on for many years to come.
However, this year is tinged with sadness, this year we have tipped over and Samuel has been diabetic longer than he hasn't. He has spent more than half his life injecting insulin, more than half his life counting carbs and measuring bg levels, and if I'm honest it sucks. But this is the hand we have been dealt, Samuel is an awesome young man, he is shining at school and he doesn't let his condition stop him from doing anything so actually I think we are really quite lucky, as it really could be a whole lot worse.
Tuesday, 24 December 2013
Missing........Samuels hypo awareness!
It appears that Samuel has misplaced his hypo awareness, actually his hyper awareness seems to be lost as well. Saying that he never really has had much hyper awareness. I just know when he is high as he is more irritating than his usual 9 year old boy self. You know what it's like.....he won't listen, do as his told, jumping around more than usual, the attention span of a goldfish, and generally I have the strong urge to shake him! That or push him through a wall, but I'm not allowed to do that ;-)
He did however recognise the fact that he was going low. He couldn't really describe it he would 'just feel low'.
The other week though we were sitting down to dinner and I had asked him to test.....1.5!! This is the lowest bg we have had since diagnosis. Up until he saw the number he was fine, he was playing with his sisters, once he saw the machine this changed and he got all emotional. It shocked me because it seemed to come out of nowhere. He hadn't been to his usual Friday night swimming lesson, he hadn't been charging around the garden. The pump was functioning correctly, it was all very odd, and the fact that it dropped so low without him knowing concerns and scares me. If he doesn't realise he is hypo and he isn't wearing a sensor then we are leaving it up to someone else noticing that maybe he doesn't look quite right! This is a huge ask of someone.
Thankfully at school we have a few people who do notice if there is something not quite right. One of them has been with Samuel since the start and can read him really the well, she knows when he is low. The others can usually tell when he is high as he is more 'jumpy' and can't sit still.
There are not enough words to describe how grateful I am to these ladies, they do an amazing job keeping Samuel safe in school, and I have never had to be concerned about his health when he is there.
But...... If anyone does come across his hypo awareness could you please send it back this way, with it missing the whole diabetes thing is so much more complicated!!
He did however recognise the fact that he was going low. He couldn't really describe it he would 'just feel low'.
The other week though we were sitting down to dinner and I had asked him to test.....1.5!! This is the lowest bg we have had since diagnosis. Up until he saw the number he was fine, he was playing with his sisters, once he saw the machine this changed and he got all emotional. It shocked me because it seemed to come out of nowhere. He hadn't been to his usual Friday night swimming lesson, he hadn't been charging around the garden. The pump was functioning correctly, it was all very odd, and the fact that it dropped so low without him knowing concerns and scares me. If he doesn't realise he is hypo and he isn't wearing a sensor then we are leaving it up to someone else noticing that maybe he doesn't look quite right! This is a huge ask of someone.
Thankfully at school we have a few people who do notice if there is something not quite right. One of them has been with Samuel since the start and can read him really the well, she knows when he is low. The others can usually tell when he is high as he is more 'jumpy' and can't sit still.
There are not enough words to describe how grateful I am to these ladies, they do an amazing job keeping Samuel safe in school, and I have never had to be concerned about his health when he is there.
But...... If anyone does come across his hypo awareness could you please send it back this way, with it missing the whole diabetes thing is so much more complicated!!
Sunday, 4 August 2013
I'm thinking ignorance is bliss!!!
Ignorance is bliss?
Now this is not something that you would usually hear me say. I truly believe that knowledge is power, and armed with it anything is possible. However, Samuel and I went sensor training on Friday, and as his care is with UCLH he is funded for 10 sensors a year. As he has been pumping for almost a year now I thought it was time for us to try them, also his levels have been all over the place recently, I think we may have a bit if a growth spurt going on, although we are also in the school holidays which is ALWAYS a bit of a nightmare.
We came away with Samuel looking more like the bionic man, with the pump attached on one side and the sensor on the other, and the thing hasn't stopped alarming since. The thing with testing only five or six times is that you only get a snapshot of what is going one, the levels could be within range at these times and that makes us believe that the control is good, and we feel great! We are winning, we are in control not the diabetes, and that's where sometimes we are completely wrong!
The last two days have been a complete nightmare and a real eye opener! I thought we were plodding along quite nicely and things weren't too bad, how wrong was I! We have had high levels most of the time, yesterday he did not get below 10 until about 8pm, and then started rising again most of the night. Today has not been much better, it started good, but this afternoon has been constantly rising and now it it has dropped like a stone!
The sensor is a fantastic bit of technology but after two days of rather annoying numbers part of me thinks I'd rather not know!!
Now this is not something that you would usually hear me say. I truly believe that knowledge is power, and armed with it anything is possible. However, Samuel and I went sensor training on Friday, and as his care is with UCLH he is funded for 10 sensors a year. As he has been pumping for almost a year now I thought it was time for us to try them, also his levels have been all over the place recently, I think we may have a bit if a growth spurt going on, although we are also in the school holidays which is ALWAYS a bit of a nightmare.
We came away with Samuel looking more like the bionic man, with the pump attached on one side and the sensor on the other, and the thing hasn't stopped alarming since. The thing with testing only five or six times is that you only get a snapshot of what is going one, the levels could be within range at these times and that makes us believe that the control is good, and we feel great! We are winning, we are in control not the diabetes, and that's where sometimes we are completely wrong!
The last two days have been a complete nightmare and a real eye opener! I thought we were plodding along quite nicely and things weren't too bad, how wrong was I! We have had high levels most of the time, yesterday he did not get below 10 until about 8pm, and then started rising again most of the night. Today has not been much better, it started good, but this afternoon has been constantly rising and now it it has dropped like a stone!
The sensor is a fantastic bit of technology but after two days of rather annoying numbers part of me thinks I'd rather not know!!
Saturday, 15 June 2013
Lets spread the word........
Today marks the end of diabetes awareness week, this year I haven't made a fuss and I haven't written about it. I don't really know why I've let it pass unnoticed, I've maybe pushed it to the back of mind, I don't actively think about it 24/7. Don't get me wrong there really is no getting away from it, not with two of them in the house with it, but it's now just the norm for us.
I accept, that I appear to be fairly laid back about Samuels diabetes, but I'm like that generally, and I always have been. Obviously everyone deals with life events differently, and what is right for one isn't always right for another. However, I do find myself getting rather agitated, and here's why. I don't understand why some people perceive others as ignorant if they question something to do with type 1 diabetes, or they believe something to be true when it isn't. Clearly the media have a huge part to play in what people believe to be true as they very rarely distinguish between the different types, and yes this does annoy me......a lot!! That said, unless something actually affects you why would you know? There are thousands of children's conditions / diseases out there, what makes 'our' one so special.
As a parent of a type 1 diabetic child we can think that we have it tough, and I totally agree its not easy, but lets take the time to be thankful for the children that we have. Lets also take the time to learn about other conditions, and have the understanding for others that we are desperately seeking for ours. Lets use the platform that we have, and use the audience that we have on our campaign to make people awareness of not just our fight, but the fight that parents of children with other conditions have.
Here's mine:
I have a good friend who I've known for about 8 years, her name is Maria. Our children went to nursery together, and then moved to to primary school together. She is, without doubt the bravest woman that I know, and feel blessed, and I feel proud that she is my friend.
6 years ago her son, (her only child) was diagnosed with DMD (Duchenne Muscular Dystrophy). For these of you that don't know this is an inherited (genetic) condition which affects the muscles, causing muscle weakness.
About 1 in 3500 boys in the UK are born with DMD, and the average life expectancy currently is 27 years old.
27 years old, that is no age at all!! As time goes on, and each year passes, it gets harder, it's not going to get better.
If you were to meet her, you would see the most cheerful, and smily person. She is positive most of the time, lets face it none of us can be positive ALL of the time.
She, like me does her bit to raise awareness, although she does mad things like swims with sharks, and throughs herself out of planes........ seriously she's crazy!! (I will stick to my running!)
So, my followers, and those of you that read this blog take the time to read up about this condition, and help my friend spread the word about DMD.
You can find out more at
http://www.nhs.uk/Conditions/Muscular-dystrophy/Pages/Symptoms.aspx
http://www.patient.co.uk/health/duchenne-muscular-dystrophy
I accept, that I appear to be fairly laid back about Samuels diabetes, but I'm like that generally, and I always have been. Obviously everyone deals with life events differently, and what is right for one isn't always right for another. However, I do find myself getting rather agitated, and here's why. I don't understand why some people perceive others as ignorant if they question something to do with type 1 diabetes, or they believe something to be true when it isn't. Clearly the media have a huge part to play in what people believe to be true as they very rarely distinguish between the different types, and yes this does annoy me......a lot!! That said, unless something actually affects you why would you know? There are thousands of children's conditions / diseases out there, what makes 'our' one so special.
As a parent of a type 1 diabetic child we can think that we have it tough, and I totally agree its not easy, but lets take the time to be thankful for the children that we have. Lets also take the time to learn about other conditions, and have the understanding for others that we are desperately seeking for ours. Lets use the platform that we have, and use the audience that we have on our campaign to make people awareness of not just our fight, but the fight that parents of children with other conditions have.
Here's mine:
I have a good friend who I've known for about 8 years, her name is Maria. Our children went to nursery together, and then moved to to primary school together. She is, without doubt the bravest woman that I know, and feel blessed, and I feel proud that she is my friend.
6 years ago her son, (her only child) was diagnosed with DMD (Duchenne Muscular Dystrophy). For these of you that don't know this is an inherited (genetic) condition which affects the muscles, causing muscle weakness.
About 1 in 3500 boys in the UK are born with DMD, and the average life expectancy currently is 27 years old.
27 years old, that is no age at all!! As time goes on, and each year passes, it gets harder, it's not going to get better.
If you were to meet her, you would see the most cheerful, and smily person. She is positive most of the time, lets face it none of us can be positive ALL of the time.
She, like me does her bit to raise awareness, although she does mad things like swims with sharks, and throughs herself out of planes........ seriously she's crazy!! (I will stick to my running!)
So, my followers, and those of you that read this blog take the time to read up about this condition, and help my friend spread the word about DMD.
You can find out more at
http://www.nhs.uk/Conditions/Muscular-dystrophy/Pages/Symptoms.aspx
http://www.patient.co.uk/health/duchenne-muscular-dystrophy
Thursday, 14 March 2013
The day before D day....
Tomorrow is Samuels diabetic birthday. We have reached year number 4, and we are now at the point where he has lived with this condition for the same amount of years as without.
There has been big changes in the last year, we moved his care to UCLH, and he now has an insulin pump. We are only six months in with the pump but we can see the different, he has less mood swings and is more like the 'old' Samuel. Don't get me wrong, we have had some downs as well, bent cannulas, and ketones, but I am pleased that we made the change.
I don't usually get emotional around the D day, but I was sitting on a bench in the school field watching Samuel play football with nine other boys. He had such a big smile on his face as he loves football, and all the time I was sitting there, freezing, I might add, and for the first time I was thinking that in my pocket, no bigger than my phone is his pump. The battery operated machine than keeps him alive, and it made me feel really sad.
To watch him play you wouldn't know, and his friends don't treat him any different, but I know, I know that at any point his levels could drop and he would have to stop. That we are the only parents that stay because we HAVE to, not just because we want to. It doesn't matter him though, he just gets on with being an 8 year old boy.
We are four years in and have learnt so much, but there is still so much to learn, and learn we will until maybe one day we won't have to because the cure will have been found.
Hope is in a Cure!!
There has been big changes in the last year, we moved his care to UCLH, and he now has an insulin pump. We are only six months in with the pump but we can see the different, he has less mood swings and is more like the 'old' Samuel. Don't get me wrong, we have had some downs as well, bent cannulas, and ketones, but I am pleased that we made the change.
I don't usually get emotional around the D day, but I was sitting on a bench in the school field watching Samuel play football with nine other boys. He had such a big smile on his face as he loves football, and all the time I was sitting there, freezing, I might add, and for the first time I was thinking that in my pocket, no bigger than my phone is his pump. The battery operated machine than keeps him alive, and it made me feel really sad.
To watch him play you wouldn't know, and his friends don't treat him any different, but I know, I know that at any point his levels could drop and he would have to stop. That we are the only parents that stay because we HAVE to, not just because we want to. It doesn't matter him though, he just gets on with being an 8 year old boy.
We are four years in and have learnt so much, but there is still so much to learn, and learn we will until maybe one day we won't have to because the cure will have been found.
Hope is in a Cure!!
Saturday, 15 December 2012
Diabetes burnout!
It's been a while since I have written anything, and the only thing I can put this down to is diabetes burnout.
After the evening when I couldn't wake Samuel I've been in a bit of a bad place, and its taken me a while to get out of it. I've not really want to know if that makes sense, obviously I can't get away from it, I am Samuels main carer, so I have no choice but to think about it every day. However, I have managed to distance myself slightly, and I've had to do it for the sake of my sanity.
Facebook, is a fantastic place, I've met many people online who are in the same position as me, and have a child, or children with type 1 diabetes, I've joined many groups, but its sometimes too much to handle.
We have just had diabetes awareness month, and world diabetes day, and last year I posted a fact each day, I updated this blog constantly, I put up links, but this year I couldn't face it. I turned my profile picture blue but that's as far as I went and I removed myself from some of the fb groups.
Yes, my son has type 1 diabetes, as does my husband, and yes it is constantly on my mind, but I have to try and distance myself sometimes, otherwise I will drive myself crazy.
After the evening when I couldn't wake Samuel I've been in a bit of a bad place, and its taken me a while to get out of it. I've not really want to know if that makes sense, obviously I can't get away from it, I am Samuels main carer, so I have no choice but to think about it every day. However, I have managed to distance myself slightly, and I've had to do it for the sake of my sanity.
Facebook, is a fantastic place, I've met many people online who are in the same position as me, and have a child, or children with type 1 diabetes, I've joined many groups, but its sometimes too much to handle.
We have just had diabetes awareness month, and world diabetes day, and last year I posted a fact each day, I updated this blog constantly, I put up links, but this year I couldn't face it. I turned my profile picture blue but that's as far as I went and I removed myself from some of the fb groups.
Yes, my son has type 1 diabetes, as does my husband, and yes it is constantly on my mind, but I have to try and distance myself sometimes, otherwise I will drive myself crazy.
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