Only once imagined....in pursuit of well-being.

"What is now proven was only once imagined" William Blake

Recently I have been blogging about my experience of the WEL course and having now completed it I  feel strangely bereft it’s over, in some ways it's a lifelong course I know, but that time regularly to tune into ourselves, be challenged in our thinking and to learn new information and skills felt very precious. Inevitably some parts stand out for us all differently. I have already blogged about food ( my most read blog to date!).The statement you are not your thoughts and the focus on mindfulness has also resonated for me.

Perhaps most importantly as we travelled through the course my belief that the "fix it" model of health we currently embrace cannot survive has strengthened. We filled in a questionnaire at the beginning of the course and repeated in at the end. I realised I had moved from stated aims like I want to reduce my allergies and asthma, I want to get fitter to now saying I want to be at peace with myself and my wellbeing. Laying down a sense of guilt around having been ill, letting go of fighting ( how often we use war analogies with cancer) and instead accepting that we all get ill, we deal with difficulties in our lives and we need to focus on healing, recovery, repair -salutogenesis-not just fighting it with chemicals.

This has been reinforced when recently reading recent calls to find the cure for the war on dementia, hailing the prevention of breast cancer through drug treatment and an article from the BMJ around the issues with regard to big pharmaceutical companies and their impact on the treatment of diabetes. Our fix it model of health leads us to see the solutions in drugs often, evidence based research reinforces this whereas experience has taught me that usually  what people want is more information, support and empowerment to regain their health and reduce their risk of disease. My work in healthcare and third sector in diabetes taught me that people never ask for help to reduce their blood sugar, they ask for support to manage work, relationships, holidays, school.

But it's so much harder to get funding for self-management programmes to support this than it  is to get prescribed drugs even when other research tells us they are often not taken. The more drugs we prescribe, the less people take. Perhaps because at heart they too know they are not the whole answer and that they don't understand how they work and why they are important.

But let's not blame the pharmaceutical industry, tempting though that may be, they are only responding to the current market driven culture that acts as if profit and growth are the ideals to pursue beyond everything else, even when common sense tells us the ultimate impact of this makes no sense.

There will be no magic bullet cure for dementia nor for breast cancer, both are a complex system of diseases. And while we need to continue funding crucial research into the treatment, prevention or reduction in risk of these diseases 

(much of this funded by vital charities) , we also as a society need to wake up to the many real issues for the people living with them. Those caring for loved ones with dementia are not usually lying awake at night calling out for a cure, they want the right support for all concerned that allows them all to live with dignity whilst protecting everyone's well-being.

These are the here and now challenges of living with long term conditions in all respects.

Developments in medicine have been amazing even within my lifetime and I admire and thank those pioneers of healthcare who have made this happen but it mustn't be the focus of all we do or invest in. The work we have campaigned for through the Alliance for many years now has highlighted this, the work on the WEL course illustrates the importance of this too, the development of mindfulness in our communities and many many other areas of peer based and community led work show the importance of salutogenesis not just at an individual or group level but really at a community and societal level. Practice based evidence needs to be valued alongside evidenced based practice too. I was delighted to see Don Berwick talk about his own journey to pursue this deeper understanding of the purpose of healthcare. 

"I have two grandchildren. I want to hand them a planet that is really thriving" 

Don Berwick

The tide is turning..... because it has to.  And that tide has to have kindness and connection in its essence, these are at the core of well-being.

I'm often described as a patient advocate and I always react to that description. I'm not a patient, I'm a person who advocates for others to be seen as that first, not merely a collection of symptoms. But that's not only what my reaction is about I know, it's because my interest goes well beyond the need to improve health and social care to looking at how we can promote and enable salutogenesis in our services and communities. No small challenge but if we don't collectively see the need for that we will not tackle the huge issues we face in our societies.

Reasons to be hopeful?

I was inspired to read this quote from Pope Francis on the need to tackle inequlaities. It's good to see so many with influence saying similar things, my plea as this year closes is please, please let's make sure we listen and play our own, however small part in being part of a healthier, kinder, more equal and compassionate society.  Thanks for following my blog and I look forward to journeying with you again I hope in 2014.

Enjoying the little things?

A short Friday inspiration today. I have had a family week with Christmas visits to the fore. I have loved every minute. From time family around their tree and watching the new Hunger Games film which I loved- to long a planned visit to Krakow. What a wonderful city it is, beauty, thought provoking history, warm, welcoming people and classical concerts in tiny churches to lift the soul. (...and warm wine to restore feeling to the feet afterwards I wont lie!)
But whats been best of all is special time with people I love so I'm sharing too this image from the film UP. Its a wonderful film,if you get the chance to see it, you may need a hanky but it will also steal your heart. Enjoy your own big and little times.

Borgen blues......

Borgen, Birgitte and......

One of the inventions I enjoy is the ability to record your favourite TV or films to watch when you want to. That ability to kick off the birkies , put up your feet and savour the delayed gratification that comes from saving the treat till the work is done cannot be overestimated. Of course if you are like me and also engage with twitter it's essential to avoid the live twitter feed if you have it on record. Spoilers abound but it's not that reason that the recent episodes of my biggest obsession- which of course is Borgen- have caused me distress. Oh no, it's the storyline of late.

As a political anorak of sorts, I admit my idea of a good night is watching Danish political drama with subtitles requiring my full attention. In fact one of the highlights of this year for me was watching the last two episodes of the of the last series at the Filmhouse in Edinburgh, followed by an interview with the actress , playing the states minister, herself. Believe me I wasn't the only person there with a bit of a girl crush on her.

Over the earlier series I have also ( like many women I guess) seen a little of myself in her dilemmas between family and a demanding career, the value bases challenged in a masculine culture, the inner idealist struggling with the paradox of power and powerlessness. But let’s be honest the similarities have been tenuous, she is younger, more glamorous, very eloquent and successful and she can wear high heels and power macs with more style than I have ever managed.

SPOILERS ALERT!!!

Of course this series has given us more in common. Her diagnosis of early breast cancer seemed to come out of the blue, not a classic lead up at all. ( How like life too...) So much so that the end of the episode she was diagnosed- left me unusually quiet. I then dreamed all night about her. Concerned that she got the support she needed, scared she made the same mistakes as me, if truthful. NO I wanted to shout, don't try to carry on, get support, allow yourself to be loved and held by those who care about you. It's hard enough, don't make it harder.   Of course I know she isn't real but I wanted to save her from herself. I wanted her to be wiser than me. I didn't want her to suffer more than she needed to.

But maybe for people like her and indeed for me the habit of pushing yourself to survive in a challenging world will also be something that kicks into play even when we know in our hearts it's not the solution; whatever the reason-but perhaps especially with illness. You know that to succeed as a woman  you usually have to do it all- but backwards in high heels as the Fred and Ginger analogy would have it. So if you add anything into the mix that smacks of weakness then in many parts of the working world the wolves circle, licking their lips. Of course it's not just that, we are also used to thinking first of our children or other family members , soldiering on whatever, wishing to protect them from pain and worry.

I confess my undoing was watching her children's reactions during last weeks episode.The hardest lesson I learned but still find hard to accept is that we just can't do that ;we can't protect those we love from things not under our control. But we can teach them how to look after themselves by trying to role model that ourselves. OK no prizes for that for me but it seems that like Birgitte I'm human too!

And so as she accepted the help, recognised her vulnerability, got cared for, her power returned, her roundness as a human being only enhancing her appeal. Let's  hope that continues. But there is still a plea from me. Lets not treat this health blip like she is just recovering from a cold. A cancer diagnosis, no matter how early, has an impact. In my role in Breakthrough, throughout my time as a nurse and now as a blogger and health advocate,I have heard the recurrent stories of those who wish people really understood the impact of cancer and that it doesn't end with treatment. In many ways that journey both psychological and physical is just starting. So I know Birgitte is a fictional character ( I do honestly!) and that the story is of people and politics, but if she shrugs off the cancer like a winter coat at the start of summer I will be pleased for her but then I really will know she isn't real.

Reasons to grateful.

After a busy but hugely enjoyable spell I am now on wind down toward Christmas and most especially time with the family over the festive period. How enormously grateful I am for that.

It seems impossible, till its done. Friday inspiration

Friday inspiration 
 Change is not based on effort, change is a creative process best not conducted as a war. 

I read this quote this week as part of the WEL programme and it has echoed over the week, not just in a personal sense but in how organisations can approach change too.
How many of us would recognise our own approach to change in ourselves and within our organisations past or present in the words "conducted as a war". How many gym memberships start that way, fitness classes, boot camps even! And how often do we catastrophise when we lose a battle that we have lost the whole war and so give up, eat or drink more, embrace the sofa and so much more. Wars are won or lost in traditional senses so even if you win temporarily , whats next? What damage needs repaired? What casualties have their been?

Instead a creative process feels so much more appealing. It's inspiring, it's stimulating, it's emergent, it has an energy and a flow. The energies therefore go into creating a future not so much on destroying a past. Suddenly it can feel such a different proposition. 

How would our organisations benefit from seeing a change process as a creative one, honouring the present and focussing on co creating a future with all,involved. How more engaged and excited do we become?

On a day where it feels a wonderful warm and inspiring light was extinguished, Madiba, let's  remember how he changed a very very troubled part of our world. He did it with warmth, with belief in our better selves, he listened , he loved unconditionally, he had a vision and convinced people they wanted it too-his humanity was his greatest gift to the work. What better legacy could their be for all of us to learn from that in all we do too. How his and others creativity was rewarded as their new nation emerged and turned away from war.

It always seems impossible until its done. Nelson Mandela. RIP

Kindness...a Friday inspiration.

This is my simple religion. There is no need for temples; no need for complicated philosophy. Our own brain, our own heart is our temple; the philosophy is kindness.

~ Dalai Lama

Kindness is the theme of my Friday inspiration. I have experienced it from others this week and how that has lifted my life. When I attended my follow up clinic for breast cancer this week I was really a bit scared. For once I admitted that. Rather than wear my "I'm fine" face I said I'm feeling anxious. The change that gave me concern was nothing to worry about but may benefit from further surgery. I'm thinking about that meantime. But not only did I witness, the warmth, kindness and humour of those who attended me, I saw it towards others too. It was wonderful to watch.

And finally I want to acknowledge the kindness I see too in the 9 o'clock club we go to with the dog. It's not formal. It's a regular gathering of a wide mixture of people who bring their dogs together. Cara generally causes a bit of mayhem as she runs in and does a fly past at about 40 miles an hour but the all welcome her warmly (mostly!). But this week Shandy aged 18 years died. Leaving her owner alone. The genuine support, kindness and concern has moved all of us. Everyone's been so kind she said.

Now in a week where the White paper on Scotland's Future ( it's in my kindle, I'm getting round to it ,honest) I want to live in a nation where kindness is a core value. Whoever prioritizes that has my vote.

Have a good weekend and a great St Andrews day to my fellow Scots and Happy Thanksgiving to all of you for whom this is a special holiday.

 

Food glorious food?

Week two of the WEL course has a focus on food which was strangely relevant to me just now. After a nasty virus and subsequent chest infection, I have been left with still very brittle asthma and I'm often triggered by food. Pretty much anything can do it. I already have some known triggers like wheat, chocolate, apples and spices but just now it's even more. I'm taking my blue inhaler constantly and approach food with both hunger and alarm. Frankly it's so tiring and not a little embarrassing. And I feel a bit deprived somehow.

Our relationship with food is so complex isn't it? I find myself feeling quite distressed by approaching each meal with concern. Food isn't just a fuel after all, we use it to reward ourselves, we celebrate the sensual pleasure of eating and especially for me it's the social occasion I value...but I'm not someone you want to share a meal with at the moment-nae  pals Audrey, that's me!

But what a bizarre relationship we have now with food in our modern world. Research in rats showed when one group were fed with breakfast cereal and compared to the other group fed with the boxes the cereals came in; the healthier rats were the ones who were eating the boxes. What has gone wrong? As a child we ate local almost always and we grew our own vegetables too. In fact the angriest I ever saw my father was when the sheep from the field got through the fence and decimated his vegetable garden. We got the fish caught locally in Fife when the fish van came around, local stores sold local fruit and veg in season. Soup was a winter constant, made from all that was available. We even dabbled with our own chickens until my father found himself unable to kill one for Christmas dinner. His attempt became something of family fable.

But now we expect strawberries in December in Scotland, we transport food across the world just to freeze it and send it back again, we factory farm animals in grim circumstances in order to have cheap food in such quantities that we get fatter year on year.

We process food beyond recognition, we supersize so much that large quantities are becoming the norm. We watch food programmes constantly on TV and yet cook less and less at home. The food industry seduces us with sugar loaded foods and packaging that creates landfill nightmares. The media bombards us with quasi research that convinces us of one food myth then explodes it again at a later stage. We no longer can make sense of much of it all. How can we-when honestly it makes no sense at all. The simple message from the WEL is life feeds life so we need to eat as much of our food closest to its freshest state and close to home the better. Now that makes sense.

How do we turn back the tide  of our relationship with food, how do we make fresh food a reality for all not just the lucky few who can access local food at an affordable level? This is a job for governments local and national but each of us can make our own changes to rekindle our relationship with food, making it a more loving and less abusive relationship than it currently is. Read the chapter in the WEL, it's a compelling case for change.

Reasons to be cheerful.

Dr Reilly spoke at the person centred care collaborative last week and over five hundred people listened to his message. He was both compelling and challenging. Reminding us that transformational change won't come from minor shuffling of the cards......we need to commit to real change in our work and lives and honestly the time has to be now. I do hope we keep our courage and don't look back. It's not easy but do we really have a choice?

.... And I have just had my annual review and all was well. I'm considering whether undergo a little more surgery but I can’t decide yet and there is no rush. Ridding myself of the cough seems most important just now.