Saturday, 3 February 2018

Is there an app for that?

Maybe it’s because it’s been January- new year, new me etc- that there have been so many references to keeping active on social media. Now I’m going to be honest and admit the keep active, 10,000 step brigade are getting on my already strained and painful nerves! A public health nagging service for the middle classes was not on my Christmas list. OK I know you love your fit bit but let’s be honest just like the puppies, it’s for life not just for Christmas. Will I  check in with you in a few months time just in case?
 The things I really needed weren’t on the Christmas list either; the grabber which stops me having to bend so low and triggering pain would not have been brought down the lum by Santa in this house. Nor would the sock “putteroner” device that I still can’t bring myself to purchase. It seems I’d rather curse loudly and sometimes leave the house minus socks instead. Pride and all that...
It’s not really that I’m in denial and a grumpy b....., or being honest, not only that. No it’s that I’m recognising more and more what it takes for disabled people ( and I am one now) to simply do ordinary tasks that most people take for granted and even are guilty of a bit of “able bodied smugness” around! 
A trip to Glasgow left me completely knackered last week. I tell you it was worse than any 10k I’d run in the past and I definitely didn’t get a medal, a free banana or even an endorphin release at the end. What I got was looks of sympathy when I got off the train and made my slow and painful way along the platform. By the time I got to the ticket barriers ( it was a long train-honest) most folk from the train were at home having their tea. I’m  still learning to master my new crutches and I did feel more secure but they brought a new meaning to the phrase painfully slow. 
So I’m thinking I might devise an app that rewards new achievements for those whom 10,000 steps are now ( or have always been) a mere treasured dream. My one would award points for everyday achievements and the odd special one too. This would include using the grabber to pick up a peanut before the dog got it ( if you are interested, so far it’s a draw (Audrey 1-Cara 1). 
Before you scoff go on -try it! It would include getting your boots on without swearing. ( that would be a resounding 0 ). It would include getting in and out a black cab without a sweat breaking out. It would include getting a seat at rush hour on a train when they announce the platform and you are nearly trampled in the rush. 
There would as well be special awards for the taxi drivers who put their steps out and run round to help you, for bus drivers who lower the bus and wait till you are sitting to move, they would also be for the folk who stop to ask how you are and if they can help.

But the biggest one would be a high five for Andrew who although he cracks bad jokes about being an Uber driver and can’t stifle every sigh when I ask if he will drop me off and grudges a taxi when the bus pass is tucked away in his pocket; he is the very reason I’m still able to be out there in the world doing my thing and surviving ( so far). And his ability to make me laugh and not just at myself, is what makes everyday a good one. Is there an app to remind you to say thank you enough?

Wednesday, 10 January 2018

A heart restored

Today I read
a stable genius
plans to make 
smaller nuclear weapons
to be more usable
so my head 
was low 
when I boarded
the souless train
I slowly drained
a tasteless coffee
I stared at a WiFi 
engaged screen
I waited for my station
Coat on
Rucksack on
Stick in hand
I gazed at the door
it opened
I raised my head
a hand held out
to help me off
I hesitated at first
then took it 
with gratitude
the kindness extended
warmed my soul
this January day
my head was lifted
a day transformed

a heart restored

Wednesday, 3 January 2018

But it’s not cancer!

I had just been diagnosed with breast cancer in my 30’s when I read an article in the Herald which mentioned that breast cancer was the "sexy" cancer to get. I was furious and ranted for days about this. If anything didn’t make me feel sexy, it was dealing with the fall out of cancer treatment. My scarred breast with surgery and radiotherapy was painful and forever changed, my confidence and wellbeing at rock bottom, my anxiety levels high, I was in a state of exhaustion and hyper-reactivity. He ( and yes it was a he) went on to say that because breast cancer attracted attention, a whole month of awareness to itself, research funding it was kinda cool to have breast cancer. He seemed to believe there was a pink hue that coloured it all away. I wrote several letters to the paper ( those were the green ink days, no twitter then to express disgust) but tore them up. None were ever sent. My release was a tear soaked pillow- and not for the first time.
I’ve been reminded of this recently as I’ve adapted to another loss of wellbeing. This time a bony growth on my spine with the impact of chronic pain and loss of mobility. Definitely not a sexy condition to get. My only nod to frivolity is a fancy walking stick. It’s not really up there with walking round the streets over night in a decorated bra, is it? 
And the contrast doesn’t end there. Because breast cancer isn’t in anyway a cool or sexy condition to get but what it does have, at least at the primary stage of diagnosis, is a clear diagnosis and treatment pathway and a well established network of support. In my recent breast cancer diagnosis I was diagnosed promptly, treated promptly, referred to specialist nurse and linked to a Maggies centre and Macmillan project as well for support. That not only has the impact of really helping with different issues and enabling the learning of new skills but you also feel valued; like your wellbeing matters to others. 
A diagnosis of a neurological condition has been so different. And I know from work I’m doing for the Neurological programme at the ALLIANCE, that is common to many other diagnosis across the spectrum of neurological illnesses. The neurosurgeon was kind and skilled in his diagnosis but also brutally honest in his assessment of my future, with or without risky surgery. It traumatised me and my husband. Our information support was google and it was less than helpful as this is a rare condition apparently. My GP was as shocked as we were but did suggest OT and community physio when I asked about it.  Then I turned to friends and family, many of whom are very knowledgeable on medical issues and so I built up a greater sense of what was possible. I asked to be referred for physio and the appointment took 20 weeks to arrive. Meantime I paid for several  physio appointments which were of limited value. I paid too, for a second opinion which confirmed the first one but at least that settled my mind. No nurse specialist exists to support you through diagnosis, no clear plan is available, no easy access to physio that’s appropriate, no signposting to charities that can help. At times I feel lost in a maze not knowing how to escape. 
As with a diagnosis of breast cancer I don’t know my future, and that kind of uncertainty is after all familiar to me so I’m relatively resilient; having learned over many years to stay in the here and now as much as I can. But the kind of trauma these types of diagnosis has frequently results in a type of PTSD ( post traumatic stress disorder) and I feel for those people who don’t have my experience and resources to help. The cushion that a clear pathway of care provides, including referral to support and rehabilitation type services reduces stress, improves skills and knowledge and helps you respond best to treatments. And what’s more you feel like you matter. 
It’s a strange serendipity that has led me to be working just now on the Neurological programme at the ALLIANCE but what I have learned through my own experience I will be putting to good use while I’m supporting that vulnerable community. Because we all matter and there is so much that can be done to improve things. So in 2018 you find me managing my pain better, pacing myself ( and trying wrist crutches soon), with my sleeves rolled up hoping to make things better for others too.....and of course I'm planning fun times along the way.

 Wishing you all the best for 2018.  

Sunday, 31 December 2017

A Hogmanay Poem

A moon, almost full
shines it’s glory
O’er Auld Reekie
this Hogmanay 

A grainy expectation,
a city holding
her breath 
for the bells

2017 ye were
a richt nichtmare
fur so mony
o’ us 

2018 aye hopeful
we share oor wishes
wi a shrug
whit can we dae?

Ma resolution is 
take dae whit a’ can
tae be a bit kinder in life
Oh aye, an tae ma sel’! 

Guan yersel
in whatever you’re
resolutions are this Hogmanay 

And cross we’r fingers for better times

Tuesday, 19 December 2017

Stories we tell ourselves at Christmas

I’ve never been one for those letters at Christmas generally. Sometimes I’ve shared new addresses with some news or a special event like my sons wedding but avoided the "Tristan got straight A’s in his exams" type annual note accompanying the Christmas card. I’ve always been a tad cynical about the one sided view of life because rarely do we share the hard times on these notes. We're less honest maybe about the family driving us to drink, of working too hard, of exams bombed, of needing to go up a dress size or whatever else keeps us awake at night. Like every falsely glittered Christmas advert we want to enhance the positives in our lives and hide the bulging credit card behind the curtain of our own denial. 
But this has been a hard year and I found myself thinking if I shared the news of the year it would be a great way to kill the Christmas spirit and so of course I haven’t. But I have learned over the years that this blog is one of my ways to process my own feelings and so here I am wanting to write about it nonetheless.
As I have described in earlier blogs, my Mum, Mary, died this year. Her illness started in February and after a long struggle she died in March with my sister and I at her side. We were so relieved that she was peaceful and spared a long slow decline into Alzheimer’s. But she’s also left a real gap which feels wider now as Christmas approaches. All 61 years of my life I’ve spent some time around Christmas with her. Memorable occasions when with the Christmas hat worn at a jaunty angle she would answer all the quiz questions, even the ones not hers. The days when the consumption of jungle juice before dinner was prepared meant the timings might be a bit off. The mince pies that no one else can make nearly as well, all remembered with an ache of sadness and  the warmth of happy times recalled. The fretting about whether she had missed anyone out and the tendency to a Christmas low mood and anxiety, a legacy from childhood, were also a feature if I’m honest but this year even that feels a loss- although one I will cope with better and try not to replicate! I know she will be close to us in many ways this Christmas, never far from our hearts and our stories.
Sharing joy
This year’s other trauma for me has been the diagnosis of a spinal problem. A recent second opinion confirmed that it’s a bony growth on my spine, pressing on my spinal cord, too risky to remove just now, especially while I still have some mobility. No one can tell me if and how it will develop so for the moment I need to stay in the moment, build condition if I can, manage pain and live the life I can. So no more moonwalks or west highland walking for me, no pushing through pain but instead permission to slouch from the physio and maybe a bit more putting my feet up! It’s hard to put any kind of positive spin on it but I am grateful my Mum doesn’t have this particular development to worry about. 

These times remind us to treasure what’s good and time with my family over Christmas will be so very special.I will treasure every moment, I promise. And on the bright side, this year’s diagnosis might get me out of peeling the sprouts? Wishing you all you wish yourself this festive period. And as for 2018 that’s a whole other story...

Sunday, 26 November 2017

Even if your voice shakes

In the last month or so we have seen more references to the abuse of power than has perhaps ever been seen before in my lifetime. The #metoo response to the Harvey Weinstein revelations has shown the extent of sexual harassment and abuse in our modern society. If you have read any of these posts you will,like me, have likely been deeply affected. Alongside that the shocking statistic that in just one day in the UK this year 95 women and 90 children were turned away from refuge. This is an endemic problem which we aren't dealing with.
I have found myself disturbed and upset and yet honestly I was not surprised. I too had experience something aged 18 and never reported it. At the time I saw it as a sleazy move that I managed to escape from. I learned from then how to avoid a similar situation with that individual. I didn’t recognise it as an abuse of power at the time but it was. I didn’t realise either that I was unlikely to be the only one, I just wondered what I had done to invite it. I told no one, I accepted it as a norm and adapted. My self confidence was dented and my voice was repressed and I was a bit more cautious. 
It was a similar feeling that I had had when I went to an older male GP when I was in my early teens. I had a rotten cough that wouldn’t go after a viral flu type illness. I felt really unwell and my parents had encouraged me to see the GP as I wasn’t improving. I went on my own and when I told my story he shouted at me and said I had to have patience to get better and told me not to waste his time. I was appalled, scared and left with an overwhelming sense of shame. I internalised that as well as my fault and it gave me a fear of doctors for many years. Again I did not see it as an abuse of power, I felt I had done something wrong. Again I told no one. When I was diagnosed with asthma, 20 years later I did think of that day. Not only a bully but a clinician who failed to diagnose me properly. The abuse of power comes in many forms.
Years later when I was being followed up after having treatment for breast cancer, I challenged the local system which required you to strip to the waist and wait till the doctor came around the screen to do the consultation. It was never the same doctor. I have rarely felt so exposed and vulnerable. So I said can I keep my clothes on as I want to ask a question and don’t feel comfortable doing that half dressed. The nursing assistant left the room in a flourish. The next time the door opened it was the consultant. I hadn’t seen a consultant since my treatment years earlier. "What is it you want" she said to me and I flinched and momentarily forgot. But I was a bit older then and drew up my courage, channeled my anger and asked my question. I remember actually feeling a bit scared and wondered why I had bothered to have the temerity to challenge the system. All of these happened within a healthcare setting.
 Yes even the first one when I was a student nurse, the man was a charge nurse. Such is the power of hierarchy in these settings. Now I have had many many good interactions and excellent care since then but I am also much more confident, knowledgeable and assertive now.I’m certain that has helped me manage to negotiate a better balance of power in relationship with the professionals I have met since then as well as the fact I can speak their language. 
Over the last almost 20 years I have been in roles where I have supported the voice of those with lived experience to influence the improvement of services within both public services and from a third sector base. This is all about re-balancing power in healthcare. But I still hear people involved in delivering and improving services say it’s so hard involving people, they don’t want "the usual suspects". Its oft repeated that they need to involve hard to reach ( seldom heard or hard to hear is more accurate) groups but don’t know how and so on and so on. It’s such a familiar refrain. But is it really hard or is it just too much of a threat to the power base of the current system? Knowledge of how to involve people will not be enough to change culture, for the culture to change in any situation where the power is imbalanced, there needs to be a shared will to do this.
Are we there yet? I’m not sure but this is a time of change and disruption and we need to take the opportunity to challenge the abuse of power wherever it exists and the culture that perpetuates it. I know from my own experience that it will be hard but not to give in. That’s what Ive learned eventually, don’t give in.....