Category: Disability

The beautiful human body

On By Claire Saul (PainPalsBlog)In Disability1 Comment

This afternoon I went to see an encore performance of the Royal Ballet production of Frankenstein at our local cinema.  Yesterday I seriously doubted that I would make it, having woken at 6am with incredible leg pain and worsening dizziness as the day went on.  Every time I moved my head the room seemed to move at double speed!  But today was a new day, with better weather and better pain control.

After a morning spent doing the run of the mill mundane – you know, washing school uniform, peeling spuds etc. – and even managing some weeding (a slightly pathetic looking patch in view of what is left to do – but Duncan really can’t get his head around the need to pull out weeds!), I was looking forward to an afternoon of culture with mum.  Going to the theatre proper, particularly an old theatre such as the Royal Opera House in Covent Garden, as a disabled person can be almost impossible.  It is fantastic that many theatres now run schemes whereby the disabled person can take a free carer with them, but this doesn’t negate the difficulties encountered in negotiating public transport (I could fill a whole post with my trials and tribulations on escalators) or the stairs in an old building or the discomfort of old seats for a body in pain.  So to be able to visit the “theatre” close to home, by car, in the relative comfort of the local cinema and yet still feel a part of the whole staged experience is fantastic.

roh---frankenstein-2-1460639621Frankenstein is a new ballet choreographed by the very young, and very gifted Liam Scarlett.  To watch such talented dancers telling a story so movingly with their bodies and the music was something very special.  For me, as someone with a disability and a painful disability at that, this piece provided several hours of escapism, a reminder of just how beautiful the human body can be.  Please understand that I don’t mean how “pretty” a person is, but rather how through a series of movements the human body can show tenderness to anger to  grace to pain in a matter of minutes.  The dancers on that stage gave me the opportunity to forget my own limitations and to watch bodies at the the peak of physical fitness perform the impossible.  Of course I know that these athletes have suffered for their art – aching muscles, bleeding toes, painful joints, psychological frailty and rejection – but for those couple of hours they glide, leap, caress, and interlace their limbs with such grace and ease that it is easy to believe that their performance is effortless.  I have to admit to a touch of jealousy that their bodies will allow them to train hard enough to be able to perform with such guile and passion….

'Frankenstein' Ballet choreographed by Liam Scarlett performed by the Royal Ballet at the Royal Opera House, London, UK
Steven McRae as The Creature, Federico Bonelli as Victor Frankenstein ©Alastair Muir 04.05.16 Frankenstein 1377

The Creature, played brilliantly by Steven McRae, was portrayed as a hideous imitation of a human, so deformed that even his creator could not love him.  Scarlett has focused upon the love stories in this dramatisation of Shelley’s classic – not just the love story between Frankenstein and his lover, Elizabeth, but also the Creature’s need to be loved and his complete bewilderment that he is unloved, and his realisation that he is “different”.  This has got me thinking about how when we find ourselves at our lowest ebb, and this isn’t necessarily due to a physical issue, it can be difficult to see ourselves as lovable.  Equally how often do we hold preconceived ideas based upon imperfection – the never judge a book by its cover analogy?  Does physical or mental difference make us less lovable?  This is getting a bit deep for a Sunday night now……maybe another blog post in the making!

So ahead of a week of exams – the final two for the uni student and end of year week for the “lovely, untidy” girl – revising for the sixth former, and Grandma’s birthday (won’t tell them your age, mum!) – I will spend a few more hours dreaming that I too can glide across a stage…..until I wake up tomorrow morning, my body telling me that I never have been able to!

http://www.roh.org.uk/productions/frankenstein-by-liam-scarlett

 

 

Friends reunited

On By Claire Saul (PainPalsBlog)In DisabilityLeave a comment

It has been a busy week.  Exams, a school trip to Belgium, dinner out for Grandad’s birthday, SATS week at the primary school – and this is just the kids.  The boys kept enthusing about how peaceful the house was last weekend without their sister, although when she returned from the battlefields trip she said that they both kept messaging her!  The student engineer is half way through his end of year exams – this means only 5 more to go.  He keeps telling us how hard done by he is as all his mates Ch7FaaZXIAEn1N9only have 2 or 3, and all of his are maths – well, yes son, you are studying engineering!

For me it has been a week of catching up with friends, one whom I hadn’t seen for several years.  The other is a nursing friend – we started at the hospice on the same day and have since shared the same neurosurgeon for our backs and now the same physio for our different, but equally odd conditions!  She for an ankle injury, me for my shoulders.  I wonder if it says something about nurses of a certain age and the wear and tear on our bodies?!

I personally find catching up with old friends a mixed blessing when living with chronic problems.  On the one hand it can serve as a stark reminder of just how much said issues have impacted on life in the intervening years.  I remember a couple of years back when I went out with some ante natal friends for dinner – I think that I had undergone my first spinal fusion and had recently started using a walking stick (pink & sparkly!) – and one of the other “girls” kept saying to me that she couldn’t believe it and by the time we left the restaurant, she had become so upset by my condition that she was in tears.  I comforted her and told her not to upset herself!  My friend whom I hadn’t seen until last week has been through some horrendous health issues herself, yet she immediately said she could see that I have deteriorated.  Yes my physical condition has worsened, yet I haven’t experienced a potentially fatal condition – but my friend contacted me the next day to say that I am an inspiration to her for the way in which I have coped.  We have both undergone major life changes due to very different illnesses, both debilitating in their own ways.  My friend, if you are reading you know who you are – and you are the one who is inspirational to me!

On the other hand, I was told three days on the trot this week that I am looking so much brighter and more like the old me.  It seems odd when actually my mobility has been considerably worse this week and a dislocation of my right hip has left me with excruciating joint pain.  But my nurse friend immediately asked if I felt different for stopping some of the drugs – she recognised that the difference was in my head! The clearing of the brain fog…….she suffered terribly when on pregabalin and knows only too well the inability to concentrate, the feelings of drowsiness and disconnection from the world.  Whilst I am still taking 600mg pregabalin, I do feel that my memory is returning since stopping the opiates and combine this with some weight loss, hey presto….Duncan says he is getting his wife back.  Hmmm, not sure if that is a compliment or not……

What else has happened this week?   My change in profession – or now lack of – was brought home to me for International Nurses’ Day and Dying Matters awareness week.  But Duncan has taken the next step in a new direction this week as his hand made, bespoke audio speakers have gone to be reviewed by a hifi magazine.  He says it feels like sending his baby off – the thought of someone else disliking your creation before it has even really taken shape is scary.  We managed an evening out for the National Theatre Live encore screening of Arthur Miller’s A View from the Bridge. download (10) It was absolutely fantastic – Mark Strong and Nicola Walker headed a great cast, and the set was brilliant in its simplicity – spoilt only by two things.  The length, as I had failed to check in advance as any good disabled, pain ridden diva would do – only to find that there was no interval, and the fact that we were sharing the cinema with a group of 16 year old boys obviously studying Miller for GCSE.  Not sure which was worse….finding myself stuck in a very long performance, or sharing said performance with 16 year old school boys!

Finally, Eurovision!  That American got my vote – wait a minute, Justin Timberlake wasn’t a contestant.  So the Ukraine win with a cheerful song about ethnic cleansing and I wait for the 17 year old to return from a Eurovision gathering.  Enjoy your weekend!download (11)

 

Blue badge

On By Claire Saul (PainPalsBlog)In Disability, Ehlers Danlos Syndrome2 Comments

blue badgeYesterday I received an email reminding me that my blue badge is due to expire next month and I need to apply for renewal.  The process was fairly straightforward online, but having gone through so many strands of the benefits system since being “medically pensioned”, is it only me who finds the lack of liaison between departments so frustrating?  The number of times that I have given identical information to slightly different departments, and the amount of time and money that could be saved if there were joined up thinking and communication between them.  I had to upload another photo, which then had to be processed – yet there is already one on file that is on my current blue badge.  I really haven’t changed that much!  I automatically qualified due to my disability, oops no, my personal independence status, but I am pleased to see that the application process is tighter now than it was 3 years ago and that I was asked to send documentation regarding my mobility to the council.  When I applied last time I was surprised that I didn’t have to provide any form of proof, and have been frustrated at a lack of consistency across areas. Not to mention the rise in thefts of blue badges from vehicles and subsequent black market (http://www.disabledmotoring.org/news-and-features/news/post/127-blue-badge-theft-increases). I had better stop there!

This has got me thinking about how much chronic pain robs us of our independence and sense of self.  I still remember so clearly the first time that I put that badge in the car windscreen when mum and I went food shopping 3 years ago.  The last thing that I wanted was a bl..y blue badge for so many reasons, but on that day I felt an overwhelming sense of both shame and sham – I felt guilty that I was using a disabled spot when there were others so much worse off than me, but it was also like admitting defeat.  A loss of independence and actually facing up to needing help.  My dad and godfather always used to joke that they planned to retire to a chateau in France and “what was the point in having a nurse in the family if not to look after us?”.  A nurse with a dodgy back is probably worse than no nurse at all!

My blue badge has become a life saver in so many ways though, as my mobility has deteriorated over the last few years. images (1) The second fusion – the revision and extension – has actually made things harder physically and at times I feel like I’m going to snap in two at my waist.  I wrote on one of my pages about the Ehlers Danlos consultant’s comments regarding fusions, and I really understand where she is coming from now as the strain at the joint above the screws feels under more and more duress.  the stimulator can’t help with this pain.  So to be able to park the car in the centre of town and avoid a long, slow, painful walk back is priceless.  I walk with a stick or a crutch these days – too many falls leaving me too unstable without – but only 2 out of 11 of us used an aid from our pain group.  One of the men, in his 50s, said that he found it infuriating (using rather more colourful language!) that when he parked in a disabled spot he would regularly get disapproving looks, despite his blue badge.  In fact he has been on higher rate Disability Living allowance for several years, but he doesn’t look disabled – you can’t see his pain.

As a hospice nurse, I did become skilled in recognising the tell tale signs of an individual’s pain and our nearest and dearest will learn to recognise those signs in us; but Joe public is easily fooled by a cheery greeting, that very upright posture (from screws and rods, or indeed from the need to stand up to feel the scs!) or a slash of lipstick and blusher.  Sometimes we need to be fooled too.