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!

Tuesday 17 September 2013

The Big Event

The Big Event

Diabetes UK 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 -

  • Artificial Pancreas
  • Stem Cell, and her own area
  • Immunotherapy
The artificial pancreas is probably the one that is closest to be available to many, but alas its not a cure, but it is some extremely advanced technology that could remove a lot of the worry and the harm of fluctuating blood sugar readings, but it would still require human interfacing.

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!



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.....

Tuesday 12 March 2013

Old dog passing on its experiences

So folk are looking at developing services for young folk with diabetes - an important step and one to be applauded, though i don't envy those given the task their job!

One such group will be Diabetes UK's YLAG Young Leaders Advisory Group, a group of young people aged 16 to 30 who will advise the charity on how it can improve to meet the needs of this demographic.

This blog is something i've decided to write as a way of giving them something from someone who has been there, bought the t-shirt and is now safely through to pipe and slippers stage

Today's folk in that age bracket will need different things than what I wanted or needed, but hopefully some of those in YLAG, and anyone else considering developing services for young adults with diabetes can review and think - yes that's still important.

When considering things like this I always get drawn to the 'Connect' part of Diabetes UK's new branding and objectives.

Young People with Diabetes need not only to Connect with fellow people with diabetes in this age bracket, the work of YLAG needs to consider the Connections that will be developing outside of life with diabetes, but into which diabetes will have an impact - college & university friends, employers in first jobs and not forgetting first relationships.

Why these people - well consider it - you have had diabetes either for a long time, or just diagnosed; its your condition, and one of the things that most people with diabetes struggle with is connecting with other people about their condition.  They don't struggle to make a connection with them as a person, but to help strengthen that  relationship I believe anything that gets developed by YLAG or others needs to include a resource for these people without diabetes that young people will make connections with.

There will be stupid questions that friends/employers will either be too embarrassed to ask, or to worried that it will upset you.

Questions such as -

'Can I take a friend with diabetes into lodgings with me rather than Halls?'

'Can I take a friend with diabetes on a stag or hen weekend, what will the effect be on their blood glucose?'

'Will doing exams have an impact on my friends blood glucose control and what can I do to help?'

'Does diabetes needs to be considered a condition for granting people extra time in exams due to risks of hi's and lo's impacting?'

'Do I need to provide facilities for someone with diabetes to take their injections?'

'Will someone with diabetes have more sick absence than someone else?'

and of course the really icky question

'What about sex and blood glucose control?'

Ask your current friends/employers if these are things they have wanted to ask you and been too frightened to ask, or maybe they have been asked - brilliant if they have.

My experience in that age bracket was that people did ask these questions of me and I was happy to keep them correct, but it would have been nice to have something that I could have pointed them towards.

Diabetes impacts on not only you but it impacts on all around you - we must never discount the fact that its not just diabetes and you


Tuesday 19 February 2013

It's only an MOT

Some comments among the diabetes online community #doc and among friends have prompted me to put into words my feelings of relationships with Healthcare Professionals (HCP's) and how to get the best out of clinic visits.

I'm going to use an analogy stream that helps me when thinking about dealing with HCP's and that is think of it like your relationship with your car mechanic before you take the car for an MOT or service.

It happens only occasionally, they are the experts in their field, but they haven't been driving your car every day for the last year etc.

You and your HCP is not much different.  They are the experts in their field, but you are the one who has to live with diabetes 24/7/365.

Your visit to your HCP team should be about checking levels, ticking boxes of targets and measures, you are the one though who day to day has to make sure there is enough fuel in the tank to get you from A to B and you have to wipe the dead flys off the windscreen (take that as my analogy for dealing with high blood sugars - equally harrowing and gross)

HCP's can offer you the benefit of their wisdom, they are the experts, but they really haven't got much right to criticise you when they see you twice a year, their job should be to advise you on new developments, check your still happy with your own control and make sure is there anything that can be done for you to improve your control of YOUR condition.

My personal relationship with my healthcare team is great, not everyone's will be, but a lot of it has to come to down to respect, if we go in to them with an attitude 'that you know nothing' you're not going to change that in a 10 minute appointment - you have to build a relationship, if your HCP team is small enough then you can ask about seeing the same HCP each visit for the next few visits, there should be a willingness to do this, even in a big team.  The respect though has to be two way, your HCP has to be willing to give you respect back and accept that you might not have the textbook understanding - but you have the bleeding fingers of finger pricking, the dry mouth of high blood sugar and the panic of a low blood sugar to deal with every day, you have developed your tools for dealing with and identifying these things, YOU KNOW YOUR DIABETES.

Wednesday 30 January 2013

What type are you?

So its been a while and i've decided to write another blog, a blog thats kinda linked to an e-petition I launched on Tuesday the 22nd of January.

You've not signed the petition - tut - well here's your chance http://epetitions.direct.gov.uk/petitions/44771

Maybe you'd rather hear what the petition is about first and why I chose to create it, well then here goes -

Being diagnosed with diabetes is a rough ride - being diagnosed with something that comes in multiple variants doesn't make it any easier, but lets get down to the beginning -

diabetes [ˌdaɪəˈbiːtɪs -tiːz]n(Medicine / Pathology) any of various disorders, esp diabetes mellitus, characterized by excretion of an abnormally large amount of urine
[from Latin: siphon, from Greek, literally: a passing through (referring to the excessive urination), fromdiabainein to pass through, cross over; see diabase]
So there we have the definition - the big issue is - why has the body suddenly started to excrete large amounts of urine and this is where the problem begins for those with no knowledge of diabetes.

 Diabetes mellitus type 1 (type 1 diabetes, T1DM, formerly insulin dependent or juvenile diabetes) is a form of diabetes mellitus that results from autoimmune destruction of insulin-producing beta cells of the pancreas. The subsequent lack of insulin leads to increased blood and urine glucose. The classical symptoms are polyuria (frequent urination), polydipsia (increased thirst), polyphagia (increased hunger), and weight loss.
 Diabetes mellitus type 2 (formerly noninsulin-dependent diabetes mellitus (NIDDM) or adult-onset diabetes) is a metabolic disorder that is characterized by high blood glucose in the context of insulin resistance and relative insulin deficiency. This is in contrast to diabetes mellitus type 1, in which there is an absolute insulin deficiency due to destruction of islet cells in the pancreas
 Rates of type 2 diabetes have increased markedly over the last 50 years in parallel with obesity: As of 2010 there are approximately 285 million people with the disease compared to around 30 million in 1985

Variants with lots in common but very different - the things in common tend to be the symptons and the complications -

Long-term complications from high blood sugar can include heart diseasestrokesdiabetic retinopathy where eyesight is affected, kidney failure which may require dialysis, and poor circulation of limbs leading toamputations. The acute complication of ketoacidosis, is mainly a feature of type 1 diabetes. However, people with Type 2 diabetes can go into a nonketotic hyperosmolar coma

What isn't common is the 'Why', but the media and unfortunately the Government will tend to make statements about 'diabetes' without attributing the 'Why'.  Yes the costs of treatments is high, yes the treating of complications is time consuming and costly and yes both variants of diabetes will need treatment and a large minority will need treatment for complications.  Where those charged with informing the nation get it wrong is by their constant mis-labeling of People With Diabetes - they engage in covering the condition with a blanket and treating us all the same.

For those readers who aren't diabetic you may question 'Why is this getting the Type right so important?' Good question and in reality before I was diagnosed as Type 1 I couldn't care less - ignorance is bliss, but once you have a connection with something then knowledge is key.

I don't blame people for their ignorance, but that ignorance can have far reaching consequences, one of the complications not referred to above is 'Depression'.

Diabetes as a condition is life altering, many of those diagnosed, both Type 1 and Type 2 will walk the line with depression, such a ground changing event to their lives being the cause, and one of the things that can force people to fall over the line, is the ignorance of others.

What I hope in my petition is to force those charged with responsibility for education and health in our country to use their influence to remove the ignorance.