It takes an election to get me thinking about politics, and well as at May 2014 there are a number of elections happening.
And as I sit and read electoral manifestos I get to thinking - all these worthy wonderful things that people stand for and against, quite often its against in the hope that Mr/Mrs Voter will be of the same mind.
As someone with diabetes though i've never read a manifesto that would have pushed me to vote one party over another.
A strange and silly thing - sure we as people with diabetes in the UK are meant to be bankrupting the NHS - should something so significant not be up there fully exercising those excellent political minds in policy teams in political party HQ's?
The sad reality is no, and diabetes isn't alone, many other conditions, chronic or otherwise simply don't merit thoughts in policy minds, well until someone decides its time to talk about how expensive this or that drug is, or they want to 'deal' with the nations health.
There will be a little jumping on bandwagon, drum beating and all that, but then the next big hot potato will come into sight, like how much the EU commissioners car costs...ok yes there can be big issues that merit the limelight, but quite often when you have a condition as serious as diabetes its disheartening to see a bit of focus raised and be hot news for what..an hour, a day...and then suddenly its nothing until Mr/Mrs MP or Minister thinks they can make political capital out of us.
I don't want to be your political capital, I want action and I want it now!
And what if they ask the question - what action? Well maybe that's part of the problem, diabetes is so complex could I really say where to start?
Simple and honest answer.....no.....but I do have ideas.....if a condition is 'sooooooooo' serious and is costing 'sooooooo' much, why then is there not centralised thinking about how to manage that condition within the whole country? Its bad enough that devolved administration means Scotland, Wales and Northern Ireland will approach the condition differently, but where it really gets messy is England where neighbouring areas can have different policy.
If you;re going to spend so much money on a condition, why is there no obvious bench-marking of good practice, and if there is, how possible is it for each area to implement it if they aren't given equivalent access to resources - and that's not just money, quite often that can be something as simple as a room in which a Diabetes Specialist Nurse can take someone for a chat.
I'm not asking for the moon, i'm not asking for the stars either, what I want is a little bit of joined up thinking
Monday, 5 May 2014
Sunday, 6 April 2014
That's just chronic
Going through some stuff today and I got to thinking about the word 'chronic', for years I used that word to mean something bad, but in truth it means something long term, usually an illness, an illness like diabetes in all its forms and neuropathy.
But the way i've been feeling the last few months I really think diabetes and neuropathy deserve the 'bad' link.
If i think too much about chronic in its literal sense, as in 'length of time' it gets me very down, at the minute anyway, maybe its my upcoming 'zero' birthday that has me thinking this way, i've had diabetes nearly 24 years now and neuropathy confirmed only this last 4 months, but you get to thinking, this is for life now, how much longer could that really be - does this mean I have another 20, 30, 40...more years with these conditions?
Can I cope with that length of time? In a way that's not even a question I should ask, its not a case of Can I?, its more a case of I HAVE to!
Diabetes in itself throws many things your way, and many will wish for a cure for it, the cure may come, but diabetes will have done its damage for some, I will be stuck with neuropathy for life, other with kidney damage, some left blind, others without limbs.
For the first time recently I had to ask myself what would I want first, a cure for diabetes or a cure for neuropathy. Maybe its my time with diabetes compared to my time with neuropathy that had an impact on my answer, but I like to think it had more to do with the impact on the quality of my life, my answer was neuropathy.
Chronic conditions leave you having to ask yourself many difficult questions, I hope for many they get the answers they deserve.
But the way i've been feeling the last few months I really think diabetes and neuropathy deserve the 'bad' link.
If i think too much about chronic in its literal sense, as in 'length of time' it gets me very down, at the minute anyway, maybe its my upcoming 'zero' birthday that has me thinking this way, i've had diabetes nearly 24 years now and neuropathy confirmed only this last 4 months, but you get to thinking, this is for life now, how much longer could that really be - does this mean I have another 20, 30, 40...more years with these conditions?
Can I cope with that length of time? In a way that's not even a question I should ask, its not a case of Can I?, its more a case of I HAVE to!
Diabetes in itself throws many things your way, and many will wish for a cure for it, the cure may come, but diabetes will have done its damage for some, I will be stuck with neuropathy for life, other with kidney damage, some left blind, others without limbs.
For the first time recently I had to ask myself what would I want first, a cure for diabetes or a cure for neuropathy. Maybe its my time with diabetes compared to my time with neuropathy that had an impact on my answer, but I like to think it had more to do with the impact on the quality of my life, my answer was neuropathy.
Chronic conditions leave you having to ask yourself many difficult questions, I hope for many they get the answers they deserve.
Tuesday, 7 January 2014
Its all about Change!
I know my blog is supposed to be about diabetes, but this post is about an opportunity that my engagement with Social Media and Diabetes has opened up for me.
I have been following posts by a number of people on Twitter about a movement call HSC Change Day 2014 - this is a Northern Ireland go at a successful innovation by NHS England in 2012 which saw hundreds of NHS staff members, patients and volunteers submitting ‘pledges’ to improve patient care within their health service.
The posts from @HSCchangeday and @DrStevenKinnear have been promoting the fact that all interested parties in Northern Ireland will be able in 2014 to make their own pledge to improve care within the service that thousands of people rely on every day. Social workers, nurses, doctors, pharmacists, managers, patients, dentists, members of the public and allied health professionals as well as other stakeholders in health and social care services in Northern Ireland can make a pledge to change for the better.
My re-tweeting and positive vibes about this campaign didn't go unnoticed and I was delighted in late December to be asked to come on board the Core Team for Change Day as an expert patient - a chance I very much didn't turn down.
So now I look forward to helping the team by getting as many service users as I can to make a pledge for change, and I might even try and pull along a few of the Health Care Professionals I know too http://www.hscchangeday.com/changeday/Home.html
But why am I getting involved and what are my 'Patient Pledges'? Simple, I love the NHS, it has been there from the day I was born, and it has been there through a number of medical issues I have had, not least my type 1 diabetes, I appreciate and value that service, but I know that to deliver that service an organisation as large as Health & Social care in Northern Ireland, or any other part of the UK, can't sit still and can't continue to deliver what it has always done without making tough decisions and most importnatly - CHANGE!
My pledges for change? -
I pledge to appreciate that everything has a cost - while there may be a lot I WANT, so long as I have what I NEED then I must learn to be content.
I pledge to be more prepared when I meet Health & Social Care staff to make any meetings more beneficial for all involved
There are many more pledges I could make, and many pledges I hope to see being made - so consider yourself asked - what would you change?
I have been following posts by a number of people on Twitter about a movement call HSC Change Day 2014 - this is a Northern Ireland go at a successful innovation by NHS England in 2012 which saw hundreds of NHS staff members, patients and volunteers submitting ‘pledges’ to improve patient care within their health service.
The posts from @HSCchangeday and @DrStevenKinnear have been promoting the fact that all interested parties in Northern Ireland will be able in 2014 to make their own pledge to improve care within the service that thousands of people rely on every day. Social workers, nurses, doctors, pharmacists, managers, patients, dentists, members of the public and allied health professionals as well as other stakeholders in health and social care services in Northern Ireland can make a pledge to change for the better.
My re-tweeting and positive vibes about this campaign didn't go unnoticed and I was delighted in late December to be asked to come on board the Core Team for Change Day as an expert patient - a chance I very much didn't turn down.
So now I look forward to helping the team by getting as many service users as I can to make a pledge for change, and I might even try and pull along a few of the Health Care Professionals I know too http://www.hscchangeday.com/changeday/Home.html
But why am I getting involved and what are my 'Patient Pledges'? Simple, I love the NHS, it has been there from the day I was born, and it has been there through a number of medical issues I have had, not least my type 1 diabetes, I appreciate and value that service, but I know that to deliver that service an organisation as large as Health & Social care in Northern Ireland, or any other part of the UK, can't sit still and can't continue to deliver what it has always done without making tough decisions and most importnatly - CHANGE!
My pledges for change? -
I pledge to appreciate that everything has a cost - while there may be a lot I WANT, so long as I have what I NEED then I must learn to be content.
I pledge to be more prepared when I meet Health & Social Care staff to make any meetings more beneficial for all involved
There are many more pledges I could make, and many pledges I hope to see being made - so consider yourself asked - what would you change?
Sunday, 27 October 2013
Halloween and Diabetes - A Trick or a Treat?
'Halloween is coming and the goose is getting fat;
Please put a penny in the old mans hat,
If you haven't got a penny, a ha'peeny will do
If you haven't got a ha'penny,
then God bless you'
The old rhyme that used to get me sweets (candy's for American readers) when I went out round the neighbours on Halloween night - never heard it? Maybe not, these days its more Trick or Treat.
Is Halloween a Trick or Treat for people with diabetes? For me being diagnosed at 16 meant I had already fully enjoyed the dressing up and knocking on neighbours doors weighed down with nuts, clementines, money and sweets..lets not forget the sweets...! But there are so many children with Type 1 who will do something similar, but won;t be able to do it carefree.
And...do parents struggle with the idea of their wee ones with diabetes heading out on Halloween night and getting gifts of sweets? Ok, we know that we can bolus for sweets, but Halloween night seems to be an explosion of sweetness, including the one thing I haven't had since I was diagnosed and still look at fondly now, toffee apples, i know I could carb count, but that's the fun in just trying a toffee apple gone.
Does Halloween mean a loss of fun for People with Diabetes? I hope not, but it does come with difficulties.
If you are a Type 2, do you buy things in to give the children who will call at your door, but do you buy too much and then the temptation is there in the next few nights to gorge? Or maybe you only give money now, rather than encourage wee ones to grow up with a sweet tooth and maybe a combination of that sweet tooth and a lack of exercise will lead to an eventual Type 2 diagnosis for that happy-go-luck trick or treater.
And lets not forget the excitement that comes with Halloween - the parties, the fireworks, the dressing up - stress and excitement have an impact on blood sugars, and if you're dressing up and happen to have a pump, you have to get a costume that accommodates that, or just sod it, wear it on a clip and let it look out of place? Were do you put your blood sugar meter, what about the emergency hypo supplies...well its Halloween, hopefully there should be plenty of hypo supplies about!
Halloween is for me the start of winter, longer nights, warm fires and staying in..whatever you're doing have a safe one..and enjoy!
Please put a penny in the old mans hat,
If you haven't got a penny, a ha'peeny will do
If you haven't got a ha'penny,
then God bless you'
The old rhyme that used to get me sweets (candy's for American readers) when I went out round the neighbours on Halloween night - never heard it? Maybe not, these days its more Trick or Treat.
Is Halloween a Trick or Treat for people with diabetes? For me being diagnosed at 16 meant I had already fully enjoyed the dressing up and knocking on neighbours doors weighed down with nuts, clementines, money and sweets..lets not forget the sweets...! But there are so many children with Type 1 who will do something similar, but won;t be able to do it carefree.
And...do parents struggle with the idea of their wee ones with diabetes heading out on Halloween night and getting gifts of sweets? Ok, we know that we can bolus for sweets, but Halloween night seems to be an explosion of sweetness, including the one thing I haven't had since I was diagnosed and still look at fondly now, toffee apples, i know I could carb count, but that's the fun in just trying a toffee apple gone.
Does Halloween mean a loss of fun for People with Diabetes? I hope not, but it does come with difficulties.
If you are a Type 2, do you buy things in to give the children who will call at your door, but do you buy too much and then the temptation is there in the next few nights to gorge? Or maybe you only give money now, rather than encourage wee ones to grow up with a sweet tooth and maybe a combination of that sweet tooth and a lack of exercise will lead to an eventual Type 2 diagnosis for that happy-go-luck trick or treater.
And lets not forget the excitement that comes with Halloween - the parties, the fireworks, the dressing up - stress and excitement have an impact on blood sugars, and if you're dressing up and happen to have a pump, you have to get a costume that accommodates that, or just sod it, wear it on a clip and let it look out of place? Were do you put your blood sugar meter, what about the emergency hypo supplies...well its Halloween, hopefully there should be plenty of hypo supplies about!
Halloween is for me the start of winter, longer nights, warm fires and staying in..whatever you're doing have a safe one..and enjoy!
Tuesday, 17 September 2013
The Big Event
The Big Event
Following the great blog post of fellow Diabetes Family member Kev Winchcombe http://circles-of-blue.winchcombe.org/index.php/2013/09/17/diabetes-uks-big-event-2013/ i've been tasked with writing up my own musings of the Diabetes UK Big Event on Saturday the 14th of September 2013.
I have to admit I usually avoid things like this, I know a lot of other people want to connect with other people with diabetes, its not ever been something high up on my agenda, strange given I help run a Support Group in my local area www.north-down-and-ards.diabetesukgroup.org but nonetheless true.
This time I was kinda forced into attendance, as a member of the Council for People living with Diabetes (CPD) our meeting had been moved to the Big Event day, coincidentally there was a need for volunteers on the day...not that i'm a great believer in coincidence...and so it turned out...my fellow CPD members from NI and myself got roped into helping out during the day - i pulled the 'MUG' straw - Morning Guide to the Venue and Room Monitor for two of the sessions.
Beginnings
The day started as a cold one, and alas it turned into a wet one, a hardy band of volunteers stationed at Hammersmith Tube & Bus Station dressed in our 'dress-blues' and maps in hand all ready to guide travellers to the Novotel and start their day at the Big Event off with a little less hassle.
As a worrying sign of what was to come the first person I came across at my guiding point was none other than Richard Lane the President of Diabetes UK, and he was lost, and I got the brunt of a mini-rant, fair play to Richard though as he made a point of finding me in the hotel later that day and apologising for his rant and thanking me and my fellow guides for our work, he'd had lots of positive comments from attendees about how friendly and helpful we had all been.
I have to say the Guide part was really enjoyable, I got to meet lots of really friendly people who were really glad to have someone to point them in the right direction, a great mix of what makes up my Facebook Group https://www.facebook.com/groups/408751785902265/ The Diabetes Family - People with Diabetes of all types, parents, pals, partners and professionals.
Alas one down side to my guiding duties was that I missed my first planned session which was to have been Diabetes Care in Your Area, but a rather cold and wet me much preferred a cup of tea and a wander round the stands warming up to walking in late!
The first session ended at 11.30 and then the enormity of what the Big Event was hit me - a mass of people of every age and character and then a tap on the shoulder and a face with a large smile and a warm handshake - i'd finally got to meet Kev Winchcombe in person!
Midday came round very quick and so I was off to my first session 'Type 1 Research' a smallish room was being used for this session, and it soon became apparent that the room was going to be full to busting, which presented a fellow Council member, Dilys Sheppard, with the unenviable task of turning people away, and alas volunteers in our 'dress-blues' where the first to be evicted, or you could stand, I chose to stay, so more standing it was :(
Research
Type 1 Research - An introduction from Richard Elliott, Research Communications Officer at Diabetes UK highlighted the work that has gone on through Diabetes UK in the past for Type 1 research and a pointer to the charities Research Timeline http://timeline.diabetes.org.uk/ - 1/5th of Diabetes UK's budget is spent on research, though there was also the negative highlight that less than 3% of people are involved in a clinical trial http://www.diabetes.org.uk/Research/Take-part-in-research/
The main talk was then given by Yuk-Fun Liu from Kings College London, she focused on 3 areas -
Stem cell research will always have ethical issues for many, but it is a area which could offer huge potential for the creation of new beta-cells
Immunotherapy is probably the one a lot of people will have heard of through the news of the potential vaccine for Type 1 Diabetes, though in a way it not really a normal vaccine, where the body is given a controlled dose and learns to fight the infection, in the Type 1 vaccine its about training the body to recognise the good and leave it be. The trials here though are very much with the newly diagnosed.
The Question and Answer session through up the usual query on how long - a lot of people used to say the cure will be here in 10 years, in this case it was 20 years.
There was also the question on what about those who have been Type 1 for sometime...and yes there was good news of sorts...the work on Stem Cell and Islet treatment could see cells being implanted back into people with diabetes, but the body will still attack these new cells, Immunotherapy could be the answer to help protect those new cells, and as such there is hope!
My next two sessions saw me being Room Monitor, so forgive me if i get a bit brief here, I was mad mic man for a bit and didn;t really pick up as much as I probably should have!
Discrimination
The first session was 'Discrimination' a very sparsely attended session with only 34 people, we couldn't compete with a repeat session of Type 1 Research or Advanced Pumps and CGM's and that hypo dog!
The session here was led by Gavin Terry from Diabetes UK, and the main speaker was Paul Jennings, a Senior Associate - the focus was on Employment and Diabetes and reasonable adjustments.
One interesting point I got from this session was that no employer should ask you in the application process if you have a disability anymore, this should only be done post recruitment, unless the position in question is one where having a medical condition could be an issue, then an employer can ask.
No employer or service provider should discriminate against someone with diabetes, debate in the room became quite heated on issues such as employers not giving rest breaks for food and checking blood sugars, children being excluded from school as the diabetes trained teacher was off that day.
Paul did his best to field the questions, but he did caveat that each case has its own individual issues, Gavin did point out that Diabetes UK has an Advocacy Service, alas of one poor lady on her own who is very busy, but is contactable and will do her best to help.
Emotions
My last session was Emotional Issues in Type 1 Diabetes, and in contrast to my first Room Monitoring session this was a very different animal, over 130 in the room!
I was a bit headless...and really quite useless chicken in this session, by the time i found who was speaking they'd asked their question - people will not wait for the mic!!
I did pick up the following things - in that room with 130 people a question was asked about how many had access to Psychological Support - and the surprising result was as many as 20 hands went up - the speakers did recognise though that this was nowhere near enough, the cover is patchy and poorly resourced in terms of time.
Think Positive - The brain is like velcro for negative experiences, but teflon like for positive...notice what is good and savour it...every day find 3 things you're thankful for and savour it!
The session was very inter-active and the feedback from others who'd been in the room was very positive, some even saying it was the best session of the day.
Conclusions
So I ended the day tired but happy, would i willingly go to one of these events again if i wasn't being volunteered into it? Honest answer? No i probably wouldn't...but the reason why is more to do with the kind of person I am and my relationship with my diabetes rather than what the event was about....I do my sharing in small groups or on-line....one thing I left out from the research talk above was the fact that not one persons diabetes is the same, each and everyone of us will have our own reaction to it from a physical point of view, but just as much so, each of us will have our own psychological relationship with diabetes, mine is to care of it, but open enough to help others, whilst remaining ME rather than that bloke with diabetes who talks about nothing else :)
Following the great blog post of fellow Diabetes Family member Kev Winchcombe http://circles-of-blue.winchcombe.org/index.php/2013/09/17/diabetes-uks-big-event-2013/ i've been tasked with writing up my own musings of the Diabetes UK Big Event on Saturday the 14th of September 2013.
I have to admit I usually avoid things like this, I know a lot of other people want to connect with other people with diabetes, its not ever been something high up on my agenda, strange given I help run a Support Group in my local area www.north-down-and-ards.diabetesukgroup.org but nonetheless true.
This time I was kinda forced into attendance, as a member of the Council for People living with Diabetes (CPD) our meeting had been moved to the Big Event day, coincidentally there was a need for volunteers on the day...not that i'm a great believer in coincidence...and so it turned out...my fellow CPD members from NI and myself got roped into helping out during the day - i pulled the 'MUG' straw - Morning Guide to the Venue and Room Monitor for two of the sessions.
Beginnings
The day started as a cold one, and alas it turned into a wet one, a hardy band of volunteers stationed at Hammersmith Tube & Bus Station dressed in our 'dress-blues' and maps in hand all ready to guide travellers to the Novotel and start their day at the Big Event off with a little less hassle.
As a worrying sign of what was to come the first person I came across at my guiding point was none other than Richard Lane the President of Diabetes UK, and he was lost, and I got the brunt of a mini-rant, fair play to Richard though as he made a point of finding me in the hotel later that day and apologising for his rant and thanking me and my fellow guides for our work, he'd had lots of positive comments from attendees about how friendly and helpful we had all been.
I have to say the Guide part was really enjoyable, I got to meet lots of really friendly people who were really glad to have someone to point them in the right direction, a great mix of what makes up my Facebook Group https://www.facebook.com/groups/408751785902265/ The Diabetes Family - People with Diabetes of all types, parents, pals, partners and professionals.
Alas one down side to my guiding duties was that I missed my first planned session which was to have been Diabetes Care in Your Area, but a rather cold and wet me much preferred a cup of tea and a wander round the stands warming up to walking in late!
The first session ended at 11.30 and then the enormity of what the Big Event was hit me - a mass of people of every age and character and then a tap on the shoulder and a face with a large smile and a warm handshake - i'd finally got to meet Kev Winchcombe in person!
Midday came round very quick and so I was off to my first session 'Type 1 Research' a smallish room was being used for this session, and it soon became apparent that the room was going to be full to busting, which presented a fellow Council member, Dilys Sheppard, with the unenviable task of turning people away, and alas volunteers in our 'dress-blues' where the first to be evicted, or you could stand, I chose to stay, so more standing it was :(
Research
Type 1 Research - An introduction from Richard Elliott, Research Communications Officer at Diabetes UK highlighted the work that has gone on through Diabetes UK in the past for Type 1 research and a pointer to the charities Research Timeline http://timeline.diabetes.org.uk/ - 1/5th of Diabetes UK's budget is spent on research, though there was also the negative highlight that less than 3% of people are involved in a clinical trial http://www.diabetes.org.uk/Research/Take-part-in-research/
The main talk was then given by Yuk-Fun Liu from Kings College London, she focused on 3 areas -
- Artificial Pancreas
- Stem Cell, and her own area
- Immunotherapy
Stem cell research will always have ethical issues for many, but it is a area which could offer huge potential for the creation of new beta-cells
Immunotherapy is probably the one a lot of people will have heard of through the news of the potential vaccine for Type 1 Diabetes, though in a way it not really a normal vaccine, where the body is given a controlled dose and learns to fight the infection, in the Type 1 vaccine its about training the body to recognise the good and leave it be. The trials here though are very much with the newly diagnosed.
The Question and Answer session through up the usual query on how long - a lot of people used to say the cure will be here in 10 years, in this case it was 20 years.
There was also the question on what about those who have been Type 1 for sometime...and yes there was good news of sorts...the work on Stem Cell and Islet treatment could see cells being implanted back into people with diabetes, but the body will still attack these new cells, Immunotherapy could be the answer to help protect those new cells, and as such there is hope!
My next two sessions saw me being Room Monitor, so forgive me if i get a bit brief here, I was mad mic man for a bit and didn;t really pick up as much as I probably should have!
Discrimination
The first session was 'Discrimination' a very sparsely attended session with only 34 people, we couldn't compete with a repeat session of Type 1 Research or Advanced Pumps and CGM's and that hypo dog!
The session here was led by Gavin Terry from Diabetes UK, and the main speaker was Paul Jennings, a Senior Associate - the focus was on Employment and Diabetes and reasonable adjustments.
One interesting point I got from this session was that no employer should ask you in the application process if you have a disability anymore, this should only be done post recruitment, unless the position in question is one where having a medical condition could be an issue, then an employer can ask.
No employer or service provider should discriminate against someone with diabetes, debate in the room became quite heated on issues such as employers not giving rest breaks for food and checking blood sugars, children being excluded from school as the diabetes trained teacher was off that day.
Paul did his best to field the questions, but he did caveat that each case has its own individual issues, Gavin did point out that Diabetes UK has an Advocacy Service, alas of one poor lady on her own who is very busy, but is contactable and will do her best to help.
Emotions
My last session was Emotional Issues in Type 1 Diabetes, and in contrast to my first Room Monitoring session this was a very different animal, over 130 in the room!
I was a bit headless...and really quite useless chicken in this session, by the time i found who was speaking they'd asked their question - people will not wait for the mic!!
I did pick up the following things - in that room with 130 people a question was asked about how many had access to Psychological Support - and the surprising result was as many as 20 hands went up - the speakers did recognise though that this was nowhere near enough, the cover is patchy and poorly resourced in terms of time.
Think Positive - The brain is like velcro for negative experiences, but teflon like for positive...notice what is good and savour it...every day find 3 things you're thankful for and savour it!
The session was very inter-active and the feedback from others who'd been in the room was very positive, some even saying it was the best session of the day.
Conclusions
So I ended the day tired but happy, would i willingly go to one of these events again if i wasn't being volunteered into it? Honest answer? No i probably wouldn't...but the reason why is more to do with the kind of person I am and my relationship with my diabetes rather than what the event was about....I do my sharing in small groups or on-line....one thing I left out from the research talk above was the fact that not one persons diabetes is the same, each and everyone of us will have our own reaction to it from a physical point of view, but just as much so, each of us will have our own psychological relationship with diabetes, mine is to care of it, but open enough to help others, whilst remaining ME rather than that bloke with diabetes who talks about nothing else :)
Thursday, 8 August 2013
The Diabetes Family
I'm being either a bit stupid or a bit brave and adding another service into the diabetes online community #doc
I've created a new kid on the #doc
@diabetesfamily on Twitter
&
https://www.facebook.com/groups/408751785902265/ on Facebook
What is the DiabetesFamily?
The 'family' is huge, and can be summarised into five P's
(i) People with Diabetes (PWD) - Type 1, Type 2 or any other kinda variant/name they come up with in the future
(ii) Parents - And this doesn't just cover parents of children with diabetes, those children will become adults one day, but you will still be Mum & Dad, parents will always be concerned about something that impacts on their children, no matter what age the 'child' is.
(iii) Partners - Husband/Wife/Significant Other, Live in Lover, occasional bed partner - people with a close connection with you and hopefully people who care about you a good deal and have their own questions/queries
(iv) Pals - A wide ranging group - includes brothers/sisters, school friends, university friends, flatmates, pub mates any kind of mate
(iv) Professionals - This is Healthcare Professionals, Pharmaceutical firms, charities, other #DOC support groups - the kinda far-off cousin once removed of the family, strange but nonetheless an important member
Like any family there will be disagreements and breakdowns and shouting, but a family is strong because they share things in common and they have a want to be together, most of the time.
I don't plan to compete with the other longer more established #doc support folk, this is just a little something to add to the understanding that although sometimes diabetes can be a very 'me' condition, it should be an 'us', other people have a role to play, and we as people with the condition have to be open enough to let people in.
So if any of this has grabbed your attention and you can be bothered to follow another thing to do with diabetes then please do using the links/profile names above!
I've created a new kid on the #doc
@diabetesfamily on Twitter
&
https://www.facebook.com/groups/408751785902265/ on Facebook
What is the DiabetesFamily?
The 'family' is huge, and can be summarised into five P's
(i) People with Diabetes (PWD) - Type 1, Type 2 or any other kinda variant/name they come up with in the future
(ii) Parents - And this doesn't just cover parents of children with diabetes, those children will become adults one day, but you will still be Mum & Dad, parents will always be concerned about something that impacts on their children, no matter what age the 'child' is.
(iii) Partners - Husband/Wife/Significant Other, Live in Lover, occasional bed partner - people with a close connection with you and hopefully people who care about you a good deal and have their own questions/queries
(iv) Pals - A wide ranging group - includes brothers/sisters, school friends, university friends, flatmates, pub mates any kind of mate
(iv) Professionals - This is Healthcare Professionals, Pharmaceutical firms, charities, other #DOC support groups - the kinda far-off cousin once removed of the family, strange but nonetheless an important member
Like any family there will be disagreements and breakdowns and shouting, but a family is strong because they share things in common and they have a want to be together, most of the time.
I don't plan to compete with the other longer more established #doc support folk, this is just a little something to add to the understanding that although sometimes diabetes can be a very 'me' condition, it should be an 'us', other people have a role to play, and we as people with the condition have to be open enough to let people in.
So if any of this has grabbed your attention and you can be bothered to follow another thing to do with diabetes then please do using the links/profile names above!
Sunday, 19 May 2013
Loss
Been a couple of months since I put some thoughts in a blog, but this thought has been with me since a meeting of my diabetes support group on Monday the 13th of June.
I'd arranged the speaker way back in September 2012, a psychologist member of the clinical team from my local Health Trust, Dr Graham, a very accommodating Dr who was more than willing to engage with patients.
One of the issues for people with diabetes that Dr Graham raised was 'loss' and it really made me stop and think, one of the things diabetes creates is LOSS.
What kind of loss?
Loss of Control? Loss of Freedom? Loss of Life?
Control - Diabetes creates a control culture - we have to learn to control a condition, but on top of that, if you're on med's that control the level of glucose in your blood, well then there's a whole new loss of control you have to learn to live with, and that loss is pretty damn frightening, everyone can experience a low blood sugar, its a natural thing, but no-one without diabetes will experience the impact of hypoglycemia brought about by medication.
A hypoglycemic incident is one of the most terrifying things in the world to experience, more frightening than any roller-coaster ride, you lose all sense of you, in the most severe cases you become useless, you have total loss of control.
Freedom - The treatment of diabetes as a condition has changed remarkably over the years, there is much more chance for those on insulin to live a 'normal' life, but the reality is diabetes will impact on your ability to drive, your employment prospects and even something as simple as going out for dinner, drinks and a night out...its not that you can't...its simply that you have to programme in so many different equations...what will the carbs be in my meal choice?...what if they have no diet mixer for my drink?..what will drinking do to my blood glucose?
Life - Yes, diabetes is that serious...with all the other loss this is the one that those without diabetes don't think will happen..sure its only not eating sugar, diabetes isn't that serious...well sorry no, and excuse the pun...its bloody serious...every day is a challenge...every day is coping with loss and trying to achieve control whilst doing our best to enjoy freedom....and if we don't get the balance right...well then life ends.....
I'd arranged the speaker way back in September 2012, a psychologist member of the clinical team from my local Health Trust, Dr Graham, a very accommodating Dr who was more than willing to engage with patients.
One of the issues for people with diabetes that Dr Graham raised was 'loss' and it really made me stop and think, one of the things diabetes creates is LOSS.
What kind of loss?
Loss of Control? Loss of Freedom? Loss of Life?
Control - Diabetes creates a control culture - we have to learn to control a condition, but on top of that, if you're on med's that control the level of glucose in your blood, well then there's a whole new loss of control you have to learn to live with, and that loss is pretty damn frightening, everyone can experience a low blood sugar, its a natural thing, but no-one without diabetes will experience the impact of hypoglycemia brought about by medication.
A hypoglycemic incident is one of the most terrifying things in the world to experience, more frightening than any roller-coaster ride, you lose all sense of you, in the most severe cases you become useless, you have total loss of control.
Freedom - The treatment of diabetes as a condition has changed remarkably over the years, there is much more chance for those on insulin to live a 'normal' life, but the reality is diabetes will impact on your ability to drive, your employment prospects and even something as simple as going out for dinner, drinks and a night out...its not that you can't...its simply that you have to programme in so many different equations...what will the carbs be in my meal choice?...what if they have no diet mixer for my drink?..what will drinking do to my blood glucose?
Life - Yes, diabetes is that serious...with all the other loss this is the one that those without diabetes don't think will happen..sure its only not eating sugar, diabetes isn't that serious...well sorry no, and excuse the pun...its bloody serious...every day is a challenge...every day is coping with loss and trying to achieve control whilst doing our best to enjoy freedom....and if we don't get the balance right...well then life ends.....
Subscribe to:
Posts (Atom)