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!

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.....

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

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.

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 disease, strokes, diabetic 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.

What do Diabetes UK do?

This is my first go at writing a blog, so please forgive me if its rubbish!

I'm taking this step because of issues raised by several posters on Twitter via the 'diabetes online community' or #doc about the work of Diabetes UK and the recognition of the work of the charity by people who don't have diabetes.

The conception among some is that although 'they' know about Diabetes UK they struggle to see its relevance, feel that its well known in society or feel appreciation for their work.

In some of the posts on Twitter I feel this can be because the comment posters are relatively newly diagnosed and maybe there is still a degree of hurt and resentment that they now have this condition called diabetes; their newness perhaps is clouding them from what Diabetes UK has done for people with diabetes, so my challenge to people is ask yourselves the questions I pose below and replace my answers with your own thoughts -

(i) What did you know about diabetes before you were diagnosed?

I personally can say I knew nothing, ok I knew the stereo-type misconceptions 'oh that's from eating too many sweets', but the reality is I knew nothing and didn't care. There are a lot of comments from posters, again in the #doc, about Type Zero, I might blog about my annoyance at some of the comments posted surrounding that issue in another post.

(ii) What did you know about Diabetes UK before you were diagnosed?

I will draw on my statement from above - I knew nothing, I probably would have seen someone standing raising money, but the reality is I wouldn't have cared who they were, they couldn't do anything for me, but I might have thrown a pound in their bucket just out of the spirit of being charitable.

(iii) What has been your involvement with Diabetes UK post diagnosis?

My involvement started of with simply being a member of the charity, at the time it was still the British Diabetic Association, my relationship with the charity boiled down to receiving correspondence from them about campaigns and getting the Balance magazine, I now had a condition and was now happy to know there was an organisation that was fighting on my behalf, but I wasn't interested in much more than that.

As the years have gone I have become much more involved, I now help to run a support group in my local area, I fund-raise and I campaign on behalf of Diabetes UK and diabetes issues locally, and just recently I became a member of the Council of People Living with Diabetes, a governance council within Diabetes UK designed to ensure that the views of those with diabetes are heard by the charity and are central to their work.

(iv) What has Diabetes UK done for us and what are they doing now?

Quite a wide ranging question and one that maybe Diabetes UK themselves need to consider but I will point out the things I have noticed

• Careline - A communication tool for people with diabetes to talk to a real person about concerns they have;
• Voluntary Support Groups - A tool for getting together with people going through the same thing as you, talking issues with someone else who has similar experiences can be a very therapeutic thing;
• Children & Family Support Camps - A vital tool in helping children and families come to terms with what is, and lets not deny it, a life altering condition;
• Raising Awareness - The Measure-Up and 4T's campaigns have got media attention - as diabetics we need to help by promoting these campaigns and taking them to the masses - we follow famous people on Twitter - make use of it - other charities are RT'd all the time;
• Research - Diabetes UK is currently funds of and has funded in the past research into the cause and the search for a cure - without this research we could still be in the dark about so much, we still are, but Diabetes UK is shining a light into that darkness;
• Campaigning - There are too many to list seperately, but people need to give some consideration to what they have access to now and think, how did this come about? A lot of it came about because of the work of Diabetes UK - access to choice of insulin, access to disposable syringes and needles, access to test strips, access to a driving license (although I know this has become an issue - but Diabetes UK in fighting on our behalf)

So I end this blog by asking those who want to challenge the work of Diabetes UK to first of all think about what is has done, but lets not settle for past glories, also think about what you as someone with diabetes can do to help a good charity be a great charity and expand its work in the coming years.