Tag: Disability

First forays in a wheelchair – Norfolk part 1

On By Claire Saul (PainPalsBlog)In Disability, Disability Aids4 Comments

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We have just returned from a week away on the Norfolk coast (East Anglia) – hubbie, the lovely girl, my parents & 5 year old nephew.  It was touch and go as to whether I would go and this wasn’t down to my health issues, but rather my adolescents!!  Anyway after several difficult days – sorry can’t share! – we left the engineer in charge.  Would we come home to a house?  What about the little car insured for him to drive?  Wild parties? House guests? A traumatised dog?  The list could be endless leaving 20 & 17 year old boys home alone.

But away I went and we were blessed with the hottest week of the year so far.  When there is a little boy in the house and you have a sea view this can only mean one thing – the beach!  Sadly this was a part of the holiday that Auntie Claire was unable to take part in.  For a start just physically getting over the pebbles and onto the sand was nigh on impossible, and then there is the issue of cold, wet sand playing havoc with the nerve pain in my foot.  Paddling is a no, no!  Fortunately good old grandma & grandad were fantastic and sat on the beach, built sandcastles and went paddling – with a little help from Uncle Duncan & our lovely girl.

 

It was important for me that I was able to do as much as possible – both for myself and the family – but without flogging myself!  Not an easy balancing act, particularly with such hot weather.  My Ehlers Danlos symptoms – all POTS symptoms, although not formerly diagnosed yet, cardiology appointment next month – were really bad in the heat and this didn’t help with the whole pacing myself.  This is a whole post for later in the week.  As some of you might remember, I had bitten the bullet and hired a lightweight wheelchair in order to be able to increase my mobility – an attendant rather than self propelled as we figured that my poor old shoulder joints would not cope with wheel turning and remain in socket!

The first thing to point out is that Duncan returned a whole lot fitter….he would like me to say with a six pack, but we were only away for a week.  This is not to say that I spent all my time in the chair, but it certainly opened up possibilities for us that wouldn’t have been possible if I was walking.  A strong plus for Dunc was that he pushed me to the restaurant on one of our evening out and was able to have a drink – the journey home along the cliff path after a couple of ciders incorporated a few wheelies!  I was able to stay out for longer than had I been on foot, we were able to go further afield and I was better able to manage my pain.  The benefits far outweighed any negative concerns that were nagging me and it was a godsend as the weather grew hotter and I fainted more!

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The beautiful sunset & sea view from our living room

Many older people started chatting about difficulties getting about, finding a suitable ramp on the coast path, why I needed a stick, had I injured myself and I am too young to be like this.  Younger people don’t really engage in chit chat in the same way, but I was aware of a few sidelong glances, not so much pity but I hope that I don’t end up like that followed by embarrassment. The night that we went out to a lively Greek restaurant, we did leave the chair behind.  Great food followed by entertainment provided by the Constanzia brothers – the sons of the owners, who in their hayday appeared on Barrymore and Pebblemill (yes, we are talking ’90s!).  Of course as the music sped up and the tambourines& bongo were bagged by the children, the band encouraged the audience to learn some Greek dancing with the assistance of the waitress.

Our beautiful girl was definitely not going to get up to dance,  the picture above is the closest my brother(who came up for a day) will ever get to dancing – that is, his son playing the tambourine! – so the Greek mama, an elderly silver haired lady turned, to me.  In days gone by I would have been the first to jump up and I really miss that me, but I made my excuses that I couldn’t and she misunderstood me.  She thought that I meant that I didn’t know what to do, so when I lifted my stick off the floor and shouted over the music that I ‘m unable to walk properly, the poor woman was mortified.  I didn’t feel upset or put out as she didn’t know – how could she?  Sitting at the table, I can put on a pretty good show of being fit and healthy, after all pain is invisible as is the metalwork and electrodes in my spine.  What a shame then that my disability caused a third party such embarrassment.

I did make the best of it, in fact we made the best of it.  The house was a godsend for the mornings when I was unable to go out or the afternoons when I just needed to collapse with exhaustion.  We gave my parents some time off from grandparenting and did a trip to the zoo.  Children are so accepting and I made various little friends that day, as I was on their level in the chair.  I think that they just saw it as a buggy!!  We also managed to visit some exhibitions with our arty daughter – one of them contemporary and I must admit that I didn’t “get” all of the exhibits!  But it was great for Duncan to be able to push me to a fairly inaccessible 14th century church and then for me to be able to stand up and hobble round inside to view the pieces.  Our girl came away from the gallery in Holt inspired, with lots of encouragement from the gallery owner and with a packet of oil paints under her arm.  The table at home has swapped charcoal and watercolours for oils….

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Our girl’s painting of her grandparents’ bull terrier

Back home the hot weather continued on Sunday.  The house was still standing, the freezer somewhat emptier and the kitchen somewhat dirtier.  Our old dog, Sam, was delighted to see his mum, dad ……File 24-07-2016, 23 59 19and sister!

The five of us went for a trip to our local park together – believe me that this does not happen often these days.  I pushed the wheelchair initially and actually my walking was really helped by this.  Maybe a zimmer or triangular frame is in order!!  It was actually the EDS symptoms that drove me into the chair and I know that the boys were embarrassed, not for me, but for themselves!  They were far too busy catching imaginary Pokemon – I mean what is more embarrassing – running around after make believe Japanese creatures or pushing your mother in a chair?? Kids…..even if they are adults….nearly!

The chair has gone back and we now need to make a decision – although I think that it has already been made really.  I have the forms for the NHS service, but I am under no illusion that this will provide the lightweight, transportable type model that we have had.  Amazon, here I come…..

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Family selfie – in case the brothers were missing us!!
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At the beach – including Auntie Claire & her chair!

 

A Helping Hand – or Stick, or Crutch

On By Claire Saul (PainPalsBlog)In Disability, Disability Aids, Ehlers Danlos SyndromeLeave a comment

I was getting ready to go out the other day, and as every self respecting girl (well girl in my head!) attempts to do I was trying to coordinate my wardrobe.  T shirt – check; jeans – check; jacket – check; shoes & handbag – check; nearly there…..walking stick – hang on a minute!  No blue walking stick!

I remember clearly a few years ago when a mum at the school told me that her daughter, a friend of my then “little” girl, had drawn a picture of a girl with a pink stick and declared “I want to have a pink sparkly stick when I grow up just like Lucy’s mummy!”.  If I’m honest at the time I didn’t know whether to laugh or cry.  My dad had thought it would be funny to buy me my first walking stick for my 40th birthday and I still wasn’t too sure just how hilarious this was – life begins at 40….but not sure a stick is every woman’s dream gift!!  But on the other hand how great that a little girl didn’t see me as some old crock who couldn’t walk properly, but rather she saw the pink, sparkly stick as a desirable item.  Well, what little girl wouldn’t covet something covered in pink & purple glitter and sparkle??

Since then my collection has grown, and I figure that if you need a walking stick at my age then it really should be snazzy…..and match your outfit.  Vanity? Definitely. Essential? Sadly these days, yes!  Over recent weeks the pain in my hip has become more troublesome and I am using the stick in the house now as well as outside – I have been a very proficient furniture walker.  I’m sure that my right side has been compensating for the nerve and chronic pain issues in my left side – resulting in a flare of EDS & dodgy collagen in my subluxing right hip joint.  This brings me full circle to my first point – that is that I am missing a blue themed walking stick in my collection!

For some fun I’ll show you the canes that I do have – please note that this is just my opinion of a brand that I own and I have not been paid to promote any manufacturer.  My walking sticks are manufactured by Switch sticks, a firm based in London, and are folding adjustable, stylish & affordable. They advertise as ” Switch Sticks are the range of award winning stylish walking sticks, crutches, seat sticks and accessories that keep you moving and looking good. They are tough, durable, lightweight aluminium and are height adjustable making them the perfect fit for most people.  With new designs twice a year Switch Sticks are the designer walking aids to be seen with and suitable for both men and women.”

The Switch stick folds up neatly for those who just need it for occasional use or wish to take an extra in a suitcase…..to colour coordinate, of course…..and comes with a wrist strap and carry pouch.  I’ll have a look and list some other similar makes too.  I really like the Switch because it is sturdy and has a great rubber foot, which can be renewed…..but I guess the greatest draw is the fab range of colours and patterns!!  They retail in the UK for £39.99 – https://www.switchsticks.co.uk

My range……

 

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When my body parts are really failing to synchronise and play ball, I use forearm crutches.  This particular brand was recommended to me by a friend who had seen a review on an EDS site.  They are manufactured in the UK and are aptly named the “smartcrutch”, as they have such obvious features for comfort that our good old NHS crutches lack.  A great rubber non slip foot, adjustable height, but also a good supporting forearm rest that is adjustable.  For those of us with dodgy wrists, elbows and/or shoulders this is a godsend to help relieve the pressure on joints and ligaments.  The forearm rest is padded and can be adjusted from a vertical angle through to a horizontal at 90 degrees to the floor, and is finished with an easy to grip rubberised handle which is also adjustable for different arm lengths.  Finally…..yes, they too come in a great range of colours!!  £89.99, but if registered disabled they will be VAT free.  What’s not to like??

http://smartcrutch.co.uk/

Whilst I don’t use the crutches all the time, and my physio feels that they can actually put additional stress on the shoulder/pec major ligaments, when I do need extra support they are great and I do stand up straighter with them…..of course the tonne of titanium and electrode leads help with that too!!  I’ve given up explaining that the reason I’m so upright now is in order to get maximum contact between my scs electrode and my spinal cord.

Some other websites that I’ve found:

http://www.james-smith.co.uk/product-categories/walking-sticks

http://www.classiccanes.co.uk/catalogue/Fashionable_Canes.html

www.walkingsticksonline.co.uk/

http://www.fashionablecanes.com/

Meanwhile, I’m off to do a bit of colour coordinating…..where did I put my husband’s credit card??

 

 

As I strive for independence….

On By Claire Saul (PainPalsBlog)In Disability, Uncategorized14 Comments

I had my first “weekend away” since I have had my spinal cord stimulator and it tied in exactly with the first anniversary of my stay on the St Thomas’ pain unit 2 week course.  We were actually on a trip to Exeter for the sixth form student to visit the university, but as it fell during the half term holiday it seemed a good excuse for a few days away.  Those of you who have been following for some time may remember my last weekend away trip to Bournemouth shortly before my stimulator trial.  It started with a bad fall in the car park on arrival and involved a mad, pain ridden 3 hour drive home at 2 am, with me literally climbing the roof of the car on our first nigh,t as I hadn’t taken the right pain meds away.

This time Duncan informed me, after we had been on the road for half an hour, that he would not be doing an emergency drive in the night from Exeter to Surrey!  Car journeys are not easy for me, like I imagine for many with pain & disability.  The confines of the car seat, the seat belt and the inability to change position is a nightmare with back pain & a spinal fusion.  My stimulator makes the pain more bearable, but as we are forbidden from driving with a low frequency “tingly” stimulator switched on, I am unable to drive myself.  Not forgetting the EDS.  The difficulties of turning a dodgy neck and shoulder dislocations hindering manoeuvring the steering wheel do nothing to make driving easier…or safe!  With a couple of stops along the way, a dead leg and some very costly motorway coffee, we made it and actually drove into glorious weather.Exeter

Whilst Duncan did the uni tour, I was planning a spot of sightseeing and retail therapy with the lovely girl.  One thing everyone tells us spoonies is that we need to pace ourselves and sometimes it can be pretty difficult to realise our own limitations.  I knew that a full day visiting the university and attending talks would be too much for me, but I thought that a few hours out with my daughter was just what the doctor ordered – excuse the pun!  She needed reassurance – she was worried that I might fall or faint and that she wouldn’t manage by herself.  Goes back to that evening in Bournemouth when I fell as she tried to hold me upright and she ended up on the ground with me.  So when we bought sandwiches for lunch and made our way to the green by Exeter cathedral, I was absolutely forbidden from joining the hoards of students lying on the green soaking up the sun!!

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Cathedral green

She was probably right – I doubt that she would have been able to get me up again.

Exeter is very hilly.  Isn’t it odd how sometimes the very act of maintaining our independence actually renders us more disabled?  In this case it was my desire to walk, which is very limited at the best of times, that left me in more pain and thus slowed our progress considerably as we tackled the hills of the city.  The frustration and stress involved in attempting to be “normal” just increases pain and is frankly exhausting.  Our progress back to the hotel was painful in so many ways and the guilt that I felt as my slight teenager held me up descending a steep hill was awful.

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Old Exeter

I have started to accept that whilst I really don’t want to make myself more disabled – if that makes sense – that if I were to be using a wheelchair for certain situations that I might actually feel less disabled: I wouldn’t be increasing my pain with every step, my walking wouldn’t be getting slower & slower, my family would not be worrying and I wouldn’t feel the guilt for their wellbeing.  In short, I might be able to enjoy a day out and actually have some more freedom.

There, I’ve said it – never thought I would, but hiring a chair might be on the cards for our week away next month.  Any suggestions gratefully received!

 

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)

 

Half a life continued

On By Claire Saul (PainPalsBlog)In chronic pain, Spinal cord stimulator, UncategorizedLeave a comment

The journey to UCL was long and became uncomfortable, but the stimulation definitely toned down my usual nerve pain.  I was lucky really that I had been allowed to go, as I am officially the most embarrassing mother and there was great concern in the back of the car that I wouldimages (4)
say something awful to the flatmates!  My idea of awful and his do vary greatly.  I was allowed in th
e flat but Duncan was informed that he wasn’t allowed to leave me – charming!  The flatmates, 2 girls and one boy, were all perfectly charming and chatted – I do think the problem is in our stude
nt’s mind……although maybe they were all grimacing after we left!! ha, ha, ha.

The disappointing thing that I found yesterday was that the stimulation didn’t prevent me from losing my left leg as I got out of the car.  I am sure that fellow nerve damage sufferers know what I mean when I describe a leg and foot that loses all feeling and just gives way, particularly after a period of sitting.  The strangest thing was that whilst I couldn’t feel my foot at all, I was completely aware of the stimulation – parasthesia to use the medical term – within it! Oxymoron or what!

Whilst the realisation that the neurostimulator can only do so much may be tough, it was the right decision to make that journey.  There have been so many times over the years that I have been asked why I am pushing myself to do something that seems at odds with a chronic illness, and this is where the double meaning of the “Half a Life” title emerges.  When you are in the midst of a chronic illness, in my case constant nerve pain, it is all too easy to give up on life.  Those of us at St Thomas’s pain programme earlier this year have lost so much already – lost careers in the room included anaesthetist, horticulturist, barrister, nurse, sculptor – and we are the tip of the iceberg, our careers are just the tip of what we have lost.  It can feel like so much of your life has been swept aside in a flurry of failed surgeries, drugs and their side effects, hospital appointments, benefits application forms and appointments and judgements and then appeals, until the day arrives when you don’t recognise the person looking back from the mirror any more.  The pain becomes so overwhelming that it is easier to stay at home in pyjamas than to meet a friend for coffee, or attend a meeting, or go for a walk, or do any of the things that made life more than Half a Life.

Whilst I was on the programme, I met more people who had tried to take their own life in the last 12 months than I ever have.  We were one of 2 programmes running concurrently: ours for people for whom all other options had failed but who had a condition which might respond to scs, the other a 4 week course for those not quite at the same point or with a pain condition affecting multiple areas of the body.  One lady, with fibromyalgia affecting her head, was told by her own sister, a nurse, that “pain is pain – it is all the same, so get over it”.  Believe me, it is not!  This poor woman has tried to commit suicide twice and was struggling to come to terms with the news that there is no cure for chronic pain.  (www.fmauk.org)

One focus of the inpatient programme was the baggage we are carrying that is preventing us from living the life we wa‎nt to.  Some of it is impossible to lose, but there are ways to make it more tolerable – haven’t worked out how I do this with teenagers yet! Some baggage is unhelpful, unwanted or downright destructive and needs to be dumped – but may be difficult to let go.  Our state of mind is bound tightly with our physical pain; emotions, expectations, relationships all playing a role.  When I was 18 I met a new friend, and he introduced me to his mother.  She had been left disabled following a failed epidural years earlier, but had never managed to move her life forward.  Now I have empathy and comprehension of her situation, but my overriding memory is still of a sad lady who was always in her dressing gown with a glass of sherry in her hand no matter the time of day.images (3)  I made Duncan swear that he would never let me become like this – no funny comments here!!

So I continued to organise the school fete, became a governor at one school and a Friends committee member at another, taught myself to make and ice celebration cakes, held coffee mornings and dinner parties. At times it is too much on no sleep.  It would be easiest to say “no”, not to take that car journey to drop my son off, but then I wouldn’t be living even the Half life that this illness has left me with.  (to follow – page re:Living with Chronic Pain – pain buddies please email me any info you would like included, claire@saul.im)

 

Who else is out there?

On By Claire Saul (PainPalsBlog)In chronic pain, opiates, Spinal cord stimulator, Uncategorized1 Comment

image

Today we had our annual boiler service after a frustrating afternoon yesterday, sitting in waiting for an engineer to arrive.  The phone call came at 5.15 to tell us he was stuck on an emergency – really? You couldn’t have called before?

Anyway the engineer duly arrived this morning, just as I was getting ready to go out for coffee with a friend.  I found myself apologising as I walked into the kitchen and gave him an eyeful of plasters and gauze, as I was adjusting my jeans waistband over the top of everything.  This led to me explaining I had just had surgery, one thing led to another and, as my kids would moan, I gave him my story – “omg, here we go. Why do you have to always tell people?” ,”maybe because they ask!” – and he proceeded to tell me about his brother.

As a 12 year old boy he was involved in a hit and run, which has left him with disabilities that have worsened with age.  He has had numerous prolapsed discs, the same old story with lower limb problems and various surgeries over the years.  He worked as a carer for adults with learning difficulties but has had to stop, and is now living with chronic pain on a cocktail of drugs. All by the age of 40……life begins and all that!  My buddies from St T’s and those on the PainSupport forums will all recognise this story.

I suppose my reason for mentioning this, is that most of us have no idea of the number of people living with chronic pain everyday for years, in this case for a lifetime. Chronic pain is not like a broken limb or even a disease like cancer – it cannot be seen, there is nothing to cure and the sufferer often looks “well”. The effects can truly only be understood by others who have suffered – the way in which it silently encroaches on all areas of your life, taking the joy out of simple pleasures, can be truly devastating.  I really believe that I would be a much better nurse now, with a deeper, first hand understanding of my patients’ hopes and fears because of my own experiences.image

So, the British Gas man went home to his brother armed with the hospital details for the programme, this blog and my contact details – just to know that you aren’t going through this alone and there is someone there who really does understand what you are going through, makes this world of chronic pain a slightly easier to place to inhabit.  To be continued…