Alarm bells

We attended an options evening tonight at my daughter’s school.  The introductory talk had been given and we were enjoying the refreshments on offer – smoked salmon and cream cheese blinis, honeyed cocktail sausages all washed down by the obligatory glass of vino – when I commented that we would have to walk through the security sensors to go into the library where the staff was assembled.  “I wonder if I will affect them?” I mused, to which daughter glowered “you’d better not”.  We passed through without incident, and she disappeared off to speak with the relevant teachers about her subject choices.

So imagine her disgust and embarrassment as we left the event and suddenly the alarm went off, the red lights were flashing and everyone was looking at us!  Hurray, I’ve activated my very first security alert with my stimulator!!

You shoot me down, I won’t fall, I am titanium

images (3)At the moment my downfall seems to be my titanium.  Along with storms Abigail and Barney – who names these storms??  Isn’t Barney a big, purple dinosaur?  Every time that we have a storm, particularly wi
th high winds, a couple of things happen in our house.  The  first is that our crazy mutt stalks the house panting and it is the only time that he won’t  stay in the kitchen at night.  Thunder and lightening or fireworks – he’ll just go into the garden and have a really good bark and then settle down; but when the weather is windy he becomes so upset and agitated, that I have wondered if he experiences some sort of pain.  Do the changes in air pressure cause him a problem with his inner ears in the same way that an aircraft can for us?

The other thing that happens when the weather changes is that the pain in my lower back increases.  It is more than just a drop in the temperature increasing nerve pain.  I feel a growing pressure and coldness in the spine along the whole length of the fusion and nothing will ease it.  Officially I don’t believe that there is any research or medical evidence to explain or corroborate this, but just reading other experiences online makes me think that it can’t be coincidence that so many with metal implants experience these sensations.  I do have one friend who had a titanium plate put into her thigh at The National Orthopaedic Hospital at Stanmore and she was told by her surgeon that changes in air pressure can cause changes in the titanium.  Please don’t get me wrong, titanium has led  to some fantastic breakthroughs in surgery as it is a substance that causes very little reaction when implanted in the human body.  My own experience as a nurse was mainly in the use of osseo integrated implants for facial reconstruction – that is titanium studs anchored into the bones onto which false ears or noses, for example, were attached.  These were a true game changer in the treatment and enhancement of life quality for those undergoing major surgery for head & neck cancers.  The beauty of the titanium is that the bone actually grows into the metal – hence “osseo integrated” – and gives a solid base for prostheses.

When I had my first fusion I was told that the aim was for the pedicle screws to integrate with the spine, the rods to hold it all in place and eventually the bones would fuse with the help of a bone graft.  Unfortunately the bone graft did not take and the metalwork was not in the correct position- hence the need for a revision.  For me I believe that the fusion has increased my mobility problems, aggravated my hypermobile spine and left me more disabled – yes, I do regret having the second op and would urge anyone to think very carefully before undergoing surgery.  But sometimes it really isn’t that easy being in the patient’s seat – particularly when you feel desperate & it can seem like there aren’t many routes open to you.  I felt that my surgeon was only going to refer me for scs assessment after all surgical routes had been explored – so leaving me with no option but to undergo another fusion as a means to an end.  Whilst there should be an honest and open dialogue between patient and medic, it is still a case of our lives in their hands.

Back to David Guetta’s lyrics – but this time I can use them to describe me and my pain.  I am titanium as I battle constant pain:

Pain, “You shout it out,
But I can’t hear a word you say
I’m talking loud, not saying much
I’m criticized but all your bullets ricochet
You shoot me down, but I get up
I’m bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium

images (4)
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
I am titanium”

24 years, 7 ops – but I won’t fall!


The Thief of Time

I was planning to write last night, but as the eyes of the world fell on Paris it just didn’t seem quite the correct thing to do.  Whilst I can’t adequately articulate how so many of us felt as events played out, I don’t think I’m wrong in saying that none of us can ever truly know what tomorrow will bring.  This reminds me of Latin lessons as an 11 year old – she has lost the plot, you are all thinking! – when I was taught by the headmaster, known to his pupils as Hissing Sid.  “What is the thief of time?” to which we would all chant “Pro – cras – tin – ation” – but we didn’t really understand.  How many youngsters do understand the concept of putting off until tomorrow what you could do today?

Of course, this doesn’t just apply to the tidying of one’s bedroom or cutting the grass.  When something life changing happens, it applies to the things in life that bring us the most joy and satisfaction, the things that we may no longer be able to do tomorrow.  Heaven forbid that it should be a tragedy of such magnitude that stops us in our tracks.  But I wonder how many of us living with chronic illness have suddenly been denied previously simple pleasures?  We had a “friends and family” session on the inpatient programme during which our nearest and dearest were invited in to understand some of the therapy we were undergoing, and also the mechanics of the implant.  One of the questions we were all asked was to name something that we had lost as a result of the illness, and something that we would like to be able to do after the implant.  Going round the circle from patient to relative to friend, the common theme was to be able to enjoy just simple tasks again – a walk in the park as a family, a meal out, sitting on the floor playing with grandchildren, playing cricket with children, a holiday.  Sometimes it is all too easy to get so caught up in our own situation, that we stop seeing what is going on around us – and this isn’t just those of us with an illness.  Every day is a challenge with chronic pain joining me for the ride, and sometimes it is really tough remembering to live for today.

I had a telephone appointment with the CNS yesterday, primarily to check that the charging of my battery is working out.  No problems there and I was advised that if I would prefer to charge for an hour once a week, rather than 2 hours every fortnight, that this is absolutely fine.  This type of battery does not need to be run down a certain amount before it is recharged – good to know – but more importantly must not be left to run too low.  If left to run out of charge completely, it would have to be surgically replaced!  She also confirmed for me that I’m not alone in needing to increase my stim level now that the weather has grown colder – although I am on a fair charge at times just to be able to feel it in my foot.  So much so that I feel sure that everyone around me must be able to see my leg doing a jig – but no one in the queue in the supermarket seemed to notice this morning!

The student son has been home this week for driving lessons – he has his test next week.  Strange really that he can fly a small plane and has his glider pilot licence before he can drive a car!  He has been taking advantage of the very nice gym in the neighbours’ garden and decided to take his mother for some physio.  The full extent of my physio was on the “walking machine” – “no, Mum, its a running machine” – not when I go on it!  Actually I did really quite well, particularly at giving out advise as son was on the rowing machine (in a previous life I used to row in an eight – Karen, remember that sponsored row up the Thames?  No one thought we little girls could do it) and lifting weights.  I’ll stick to increasing my walking speed for now……..

Lest We Forget

First I must give a huge shout out for my in laws who gave me a fantastic week, in spite of the weather.  Thank you for the break, the opportunity to rest without feeling (too) guilty and for generally looking after me!  I really, really appreciate it.

We drove back home on Sunday, a damp, dreary drive.  By the time we reached the first services on the M4 motorway I was beside myself – pain, nausea, swearing I would never make another car journey.  I was grey – even I could see I looked awful, and whilst a fix of caffeine helped, getting back in the car took an enormous effort.  But then something happened that put things into perspective.

images (1) From out of nowhere, a stream of motorbikes appeared, rider after rider bedecked in red.  Their mixture of T shirts, scarves and even hats over cycle helmets formed a crimson river billowing out behind them.  Many carried flags, wreaths or giant poppies.  We left the M4 for the M25 and another fleet of riders was heading towards us on the opposite carriageway.  This was the “Ride of Respect” and I don’t know how many riders turned out on Sunday on small bikes, Harleys, huge modern Suzukis, trikes, but they paid their respects to our forces in the most poignant way I’ve ever seen.  Why was I complaining?

It’s funny, but the first time I “experienced” nerve pain was as a new student nurse caring for an old soldier.  He had served in WW2 and had a wicked sense of humour.  In other words he had great fun teasing us first years.  “Nurse, please help, I need to get up to have a pee” and then he would roar with laughter when he saw the young nurse’s face as the bed covers were pulled back and realization dawned that he had no lower legs.  He would never say what happened to leave him a double amputee, only that he was the lucky one.  Most of the time he was happy go lucky with a throaty guffaw of a laugh, but every couple of days he would change.  He would rock backwards and forwards, and weep as the pain in his feet became unbearable.  Yes, that’s right, his feet.  My first experience of phantom limb pain.  The worst time for him was during the night when he cried out in agony, but there was little that could be done to help ease it.  We cared for his stumps to the best of our ability, and helped him fit his prosthetic limbs when he could tolerate them, but it is only now that I can truly understand to a very small extent what this uncomplaining old soldier was going through.

At one of my outpatient appointments with my last surgeon, Mr B, I asked why he couldn’t just “snip”the affected nerve and be done with it.  His response was that I knew better than that, as I would still feel pain after – exactly like phantom limb pain.  The actual problem is not in my foot or my leg or even my sciatic nerve, but rather right in the nerve root which then tells my brain that my foot has pain.  In the same way my patient’s brain was being fed false information that made him “feel” sensations in his non existent feet.  The nervous system is ever complex.

Today as we remember our war dead on armistice day, it is so important to remember our war living too – those wounded and in pain, physical and emotional.images (2)

I’m still alive

This evening I heard a young lady of 18 state that she wakes every day in pain, but “the pain lets me know that I’m alive”.  

She has suffered with juvenile arthritis since she was a little girl and has chronic pain in every joint in her body, yet she is taking part in the Children in Need rickshaw challenge.  A team of 6 youngsters, each with their own special story, started their journey yesterday at Land’s End, and will cycle across southern UK to arrive in London next Friday for the live BBC Children in Need event. 

What a wise head on such young shoulders!  I will try my hardest to use this philosophy on waking each day.

Support Team Rickshaw at


imageHands up who saw Panorama on Monday night!  I watched it with my father in law by pure chance as I hadn’t noticed what the subject matter was to be.  For those of us living with chronic pain prescription pain killers are a huge part of our daily lives – and not just the opiates dealt with on the TV.  Believe me, some of the non opiates have some equally nasty side effectives and are just as difficult to withdraw from.

I remember well when the new man made drug oxycodone was first licensed for use in palliative care.  It was sold to us as the new wonder drug with fewer side effects and a reduced effect upon liver and kidney function.  However the nickname of Hillbilly heroin was starting to reach us and the alarm bells should have been ringing.  Very quickly the drug was being used for that notoriously difficult diagnosis – you guessed it, chronic pain – and it started to make its way onto the black market to join its cousin, heroin.  These days no American cop show worth it’s salts has a season go by imagewithout several references to “oxy”!

What about Joe Bloggs who visits his GP with sciatica? How will he be treated to help ease his symptoms? Diazepam – Valium- is always a good mainstay for short term use to reduce and relax muscle spasm, but what about pain killers?  The vast array ranges from low level opiates: cocodamol, codydramol, dihydrocodeine and the highly addictive tramadol; non steroidals such as ibuprofen, naproxen and diclofenac sodium; and the drugs found to help nerve pain such as the antidepressant amitryptilline and anticonvulsants such as carbamazepine, gabapentin and the gold standard pregabalin (Lyrica).  This must be prescribed by it’s trade name since various patents and licences have lapsed.  I have never known a drug to contain a list of possible side effects as long as that distributed with pregabalin – the manufacturer lists every body system to cover themselves! So Joe will leave his GP surgery clutching a script with probably suboptimal analgesia – that is not inadequate amounts, but rather not the best combination for Joe.image

So several years later Joe is finding that his long acting opiate (MST or OxyContin) is on the increase, the dreaded pregabalin is causing weight gain amongst other effects and he is taking higher doses of his short acting opiate (sevredol or oxynorm) for breakthrough pain. He is walking through the day in a fog after a sleepless night, with a brain and memory filled with opiate shaped holes, weighing 4stone more and now diagnosed to have chronic pain.  Oh, did I mention that he is also a fully paid up member of club Prozac by now?  Many of us living with chronic pain face depression and the need for “happy” pills.  More of that another time.  Alongside this Joe is attempting to show the DWP that he really can’t jump through the hoops that they would like him to, as he is no longer able to work.  Perhaps you recognise this weary, tired, depressed, overweight person who remains in pain?  To be continued…..image

How am I doing in Hereford?  I am being extremely well looked after – spoilt in fact – and I do feel guilty for not helping out.  We have had the same dismal weather making a damp squid of bonfire week as the rest of the country.  There have been a few bright lights and loud bangs for the dogs to bark at though!  I have managed to walk to the supermarket and met lots of neighbours on the way, including the retired gynaecologist (a Tommy’s man who objected to the pairing with Guy’s!) who made me laugh when he asked in a stage whisper how my bladder is!!  I continue to play with the voltage of the Scs as I need a higher stimulation in the cold, damp weather which is also aggravating the EDS – my shoulder slid out last night.  Does anyone else get paranoid that they will run out of voltage for enough relief?  How positional are other people’s Stims? I have found that if my pain is excruciating down to my foot, that lying flat on the floor increases the level of stimulation – I must speak to the CNS next week to see if I need reprogramming!image

Apologies for the odd posts today – problems with the iPad meaning I have lost the second half of the post twice!!

Pinch, punch, first of the month

I can’t believe it is November and so the countdown to Christmas begins. How true it is that the older we get, the quicker time flies.  Back at the end of the summer holidays, which feels like years ago now, I knew that I was exhausted and needed some time out from home life. A holiday somewhere hot and relaxing would be perfect…….alas not to be, due to a severe lack of funds, inability to sit on a plane or any friends/family owning a beautiful villa in, say, the Caribbean! Then came my call for my Scs trial and you know the rest of the story for the last 6 weeks.

We are now at the end of half term and finally my time for some R & R has arrived in the shape of a week with my in laws in Hereford. No kids, no cooking or picking up dirty clothes that don’t belong to me.  Can’t say the same for the dog as I’ve left one behind to be replaced by two here!  Duncan and I drove up yesterday, which is a challenge in itself as the journey is about 4 hours on a good run.  The last time I came the drive really took its toll and I’m never quite sure how long it will take me to recover.  Obviously we take regular breaks, but the final stretch on A roads is a challenge as my lower back is near explosion by then.  I feel a huge pressure in the lower spine which grows and grows in intensity – I’m not sure if this is worsened by the fusion and titanium, as I have been told that the metal reacts to changes in air pressure.  Sounds good anyway!  The Stim definitely helped to make the journey more tolerable and, when we stopped for lunch and by sitting in a different position I was able to increase the intensity, the feeling of relief absolutely washed through me.  I can’t adequately describe just how emotional it is to be able to induce that at the push of a button.  We arrived in time to see the All Blacks victory over the Wallabies, and for the British men to make history at the gymnastics World Championships.  I really must work on improving my core – those young men have inspired me, at least for this evening anyway!

We woke this morning to the fog that shrouded most of the country, befitting for Halloween weekend and giving me the perfect excuse to stay in and spend a slobby day avoiding the cold and damp.  The house is one half of a listed Georgian property on the outskirts of Hereford city centre and a stone’s throw of the cathedral. Duncan has returned home to rescue mum from the trials of overseeing teenagers and to ensure they are ready and raring to return to school in the morning.  My father in law has “enjoyed” initiation into Strictly and X Factor, ha, ha, ha and we had some fun using 3D glasses to watch the new BBC wildlife documentary.  He plans to get his own back by setting me to work tomorrow to try out my new bionic powers – he reckons mowing the lawn would be a good place to start!!  

I meanwhile will enjoy having the bed to myself and reading for as long as I want to; apparently I need to watch out for builders early tomorrow morning, as they strut their stuff on the scaffolding that currently shrouds the house, whilst renovating next door!