Help a fellow #spoonie: It’s Going To Be Thunderous! — The Hippy Geek

… or at least I hope it will. Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter. Today, continues in this […]

via It’s Going To Be Thunderous! — The Hippy Geek

Inspiring words for Easter Sunday

We all have losses and sometimes more than we can handle. We are pushed, stepped on, put down and more. We hit bottom and do bad things or merely are not there. Well hopefully you helped yourself or took a helping handing. If you haven’t yet, start. Take baby steps. Sure, we missed a mind […]

via For all the loss and all the rebirth — wwwpalfitness

Selfies – good or bad?#body image

12797598_167283200324894_1482877079_aMy beautiful daughter stood up and gave a talk with this title at the end of last week.  Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!).  What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog.  No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.

But she doesn’t like what the selfie culture is bringing out in her friends.  The obsession with posing in crop tops and layers of makeup.  So she went away and looked at statistics, including anorexia, suicides and body dysmorphia, and stood up to speak to her friends.  She doesn’t find this easy and img_1165initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened.  Hopefully it made them think for just a few minutes.

Years ago as a post reg nurse studying for a Head & Neck cancer qualification, I chose to write my dissertation on body image, or rather the effects of altered body image.  There was very little literature – mainly studies by the American Mary Jo Dropkin and the book by Mave Salter.  Body image was a touchy feely subject that we didn’t really talk about, and certainly not in relation to ourselves.  How times have changed!  The impact on my patients undergoing major, disfiguring facial surgery should not have been underestimated – for not only was there the obvious physical changes (removal of voice box, tongue, nose, eye, mandible, sinuses or a combination) but the alteration to voice and speech, the ability to eat and drink, the impact on relationships and social lives.

imagesToday I think about the impact of hidden illness on body image and self esteem.  The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted.  On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list.  Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure.  Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often.  To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!!  But writing seriously, my own self worth has shifted significantly.  I no longer feel like the person that I was supposed to be.  Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??

Chronic pain and back surgeries have robbed me of my independence.  This is probably my most prized possession that I have unwillingly lost.  It affects all areas of my life from just throwing on my coat, grabbing the car keys and popping to the shops to needing help to sit up in bed in the morning.  The reality is that I constantly have to rely upon other people to take me to places, to remember to ask if I would like a lift because I feel like a nuisance for constantly asking, to wash my hair, blah, blah,blah….I miss my able body.  A mixture of drugs and immobility have caused me to pile on the pounds – about 3 and half stone in total.  I have never struggled with my weight, even after babies, but this has been so tough.  Initially I managed it and only gained a few pounds, but as the pregabalin/lyrica dose increased so the weight did.  I always knew that my patients said the dreaded pregabalin piled on the pounds, but you cannot understand until you experience it – the fluid retention, one day being able to wear a watch and the next not – and the fact that the weight may go on very quickly with the drugs, but it doesn’t come off easily when the drugs cease.  I know that other people think I’m mad, I’m tall and carry it easier and that this should be the least of my problems.  But staring at a wardrobe full of clothes that no longer fit just adds to the decreasing confidence and at times self loathing.  I miss my able body.  The tiredness, lethargy, feeling like I’ve run a marathon when I’ve actually only been to the cinema – catching a glimpse of myself in a shop front creeping along with a walking stick, albeit a pink, sparkly one!  I have turned 80, aging at an ever increasing rate, giving new meaning to the aging process.  I miss my able body.

Yet I know I’m still one of the lucky ones.  There is always someone worse off than you, isn’t there?  So back to my lovely girl’s dilemma and I read in the press that young girls are now taking selfies of their waist sizes… measuring them with a piece of A4 paper!!  Yes, you read correctly and if this isn’t going to have a negative impact on the body image of healthy youngsters, god help the unhealthy amongst us!!instagram-in-yeni-cilginligi-a4-kagidiyla-selfie-6752966

Alexander McLean – #inspirational

Two nights ago we attended the KGS friends Entrepreneur careers evening and were privileged to hear the most amazing young man speak.  He was part of a panel featuring the cofounder of Hotel Chocolat, half of the entertainment PR firm DawBell who represent the likes of Paul McCartney, Gary Barlow & James Corden, Sophie Cornish MBE cofounder of and Jez Cartwright, performance coach to top professional sports teams.  But this panel of high flyers could not hope to compete.

Leaving school at 18, Alexander McLean decided to take a gap year before studying law at university.  But no travels around the world for this young man, instead he wanted to work with a hospice in Uganda.  During his time with the palliative care team, he was to come across patients who would change the direction of his own life.  These were mainly young men who were dying, but the difference marking them out from other patients was that they were prisoners.  As such they received little or no care, in much the same way as the homeless man found dying in a local market – no family or money equals no care or dignity.  I’m not sure either of my boys or many others aged just 18 would be able to do what he did next.  Purchased a wash bowl, soap, sheets and cared for the homeless man, advocating for him with the medics for 5 days until his death.  He watched his naked body piled upon that of a dead woman and listened as told that they would be interred in a paupers grave.  He then donned a suit, took a letter of introdution and visited the chief of prisons to ask to visit the hospital wing.  The Ugandans were probably bemused by this well spoken, educated British boy.

He was horrifed by the hospital wing – dirty, broken windows, no furniture, no bedding and rarely any staff.  Many of the prisoners had never even been to trial, never had legal representation and the most common reason for the 18 year olds being incarcerated was underage sex.  Astonishing in the 21st century.  Alexander returned to England, raised £5000, returned to Uganda and purchased sheets, blankets and paint.  He then approached local hotels for mattresses and returned to the prison where he and friends refurbished the hospital wing.  His time spent working with palliative care teams had shown him that everyone deserves care and dignity, a worth placed upon their being.  This was applicable to the staff too – once the wing was a better place to work, the staff turned up and took pride in their work, whilst the death rate dropped dramatically.  Remember this was achieved by a boy on his gap year!101012_Kigo_0826-1024x324

Alexander went on to study law and was even awarded a prestigious training place as a barrister in Lincolns Inn.  But he continued to visit Africa and saw the potential for change within a corrupt system.  What did Nelson Mandela say?  “It is said that no one truly knows a nation until one has been inside its jails.  A nation should not be judged by how it treats its highest citizens, but its lowest ones”  This was the birth of the African Prisons Project African Prisons Project which today runs across Africa, giving education and care from death row to prisoners on remand to the prison guards.Prison_staff_244-1024x324  Many are training in law and are able to help themselves and their fellow inmates, such as the murderer whose “victim” was found alive and well after 12 years but it took a further 6 years to release him.  Or Susan, the battered wife who found herself on death row after she stood up to and killed her husband.  With Alexander’s encouragment, she studied law by correspondence with the University of London, represented herself at appeal and had her sentence reduced from the death sentence to years in jail.  She currently writes pleas for fellow prisoners and when a top African judge presented her with her qualification, she was told to apply to become a judge when she leaves prison.

Alexander speaks with such clarity, compassion and passion; yet his articulate, gentle manner is so self deprecating that he deflects any achievement away from himself. Tedx you tube video I spoke with him and on learning that I had been a palliative care nurse, he went on to tell me how much he values everything  palliative care professionals do and thanked me. HE thanked ME!!  Crazy and certainly not justified when I consider everything that this extraordinary young man has achieved to date – he really should be recognised and honoured.  Queen’s birthday honours list maybe……


Alexander working alongside prisonersIMG_1536_750x563

Retune & Reunion

Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group.  I went with mixed feelings.  Eagerness to see friends who understand me and trepidation for who the scs had been successful for.  Last May the eleven of us had such high hopes, desperate hopes.  But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us.  I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.

As it happens I needn’t have worried.  I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose.  Any suggestions out there for coming down from this final  12 hourly 5mg gratefully received!  My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet.  But I did get a retune!! images (16) On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse.  Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same.  It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting.  Win, win.  Back to the INPUT session ….

Only 3 of us turned up. reunion Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury.  It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on.  We did meet some of the participants in week 3 of a 4 week course which was interesting.  A couple of them had already had stimulators which had failed – one lady had received 2, both failed.  Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully!  Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square.  I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means  ALL NIGHT.  I’m so jealous!!

We both have similar stories, similar failed surgery and pain in the same areas.  The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things!  Who do you believe?  I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future.  Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!images (17)