One day at a time

The big day has finally arrived!  I mentioned weeks ago that a birthday present for 2 teenage girls was a shopping trip to the Westfield, Shepherds Bush and tomorrow is D day.  They are excited….not so sure about Duncan.  The words cold feet spring to mind.  I will make a decision whether I can manage to go with them in the morning – at least there is plenty of disabled car parking and lots of coffee shops.  I think that there may even be shopmobility and the option to borrow a wheelchair if it all becomes too much – and that is just for Duncan!  So the girls have their vouchers and their birthday money, and instructions about what is considered a suitable purchase that mother will allow them to wear.  Oh, to be a teenage girl again…or not.

Meanwhile another one of my group is currently undergoing a scs trial, whilst another has had hers cancelled as she needs another operation.  She is absolutely gutted after struggling with chronic pain for years.  Yes, she has another condition that is causing her pain and obviously requires treatment, but she has a back story that is very similar to mine and so many others – an initial back problem from a bulging disc, several failed  surgeries and the resulting pain which nothing helps.  Drugs, side effects, sleepless nights, the desperation that sets in to find something, anything and it becomes a vicious circle.  By the time we arrived at the inpatient programme, we two had definitely been round this block several times and taken our respective families with us.  But we gelled immediately and understood each other, so this is why I can understand how desperate my friend is now feeling because I’ve been there.

Personally, I’ve felt rough for the last couple of days and I think that I probably have tried to carry on and overdone things.  The overwhelming need to be able to tell everyone that you are feeling great and that yes, it has absolutely all been worth it, is enormous.  On Friday I decided that I needed to show my face at a coffee morning hosted by the head at my daughter’s school.  A downside was that it was from 8.30 am – a dreadful time of day for me.  But I made it and my friend and I duly poured coffee and snacked on mini danish, before the first friendly face popped over to say hello.  This was followed by a couple of other parents, and then I spotted a friend talking to the headmistress, who has been very supportive of the whole family over the last year.  She immediately wanted to know how I am doing, as did my friend whom I haven’t seen since the beginning of term.  I could feel myself becoming clammy and faint, and the ability to speak with any clarity disappeared rapidly as my senses seemed to fail me.

On returning home – still only 9.30am – I had 2 more visitors during the course of the morning.  Whilst it was lovely to see everyone, I just felt like I was on a loop as I tried to describe the effect that the stimulator is having, no it isn’t a cure, hopefully it will help me to be able to function better etc., etc.  Someone else has commented today that I seem to be disappointed in my stim results and I am sorry that I may have given this impression.  It certainly hasn’t given me a magic wand to waft away all the pain, and the relief I experienced during the trial was different to that which I’m feeling now.  I’ve already mentioned that I require a higher level of stimulation voltage on the lithium battery, and that I can understand that I am adjusting to and thus becoming used to the sensations.  I am a bit worried that I will continue to need higher and higher levels of stimulation and will thus “run out” of options as I reach the top dose!  But rationally I know that this is a very long way off and that the changes are due to being more mobile and the stim is not yet scarred in place securely yet.  One reason that we are not allowed to sleep with the stim turned on, is that it is important for the body to have periods of non stimulation, so that it can really appreciate it when it is switched on.  The parasthesia should not become a new base line.

So it is tough explaining the results over and over, when the expectation is so high.  Our expectations on ourselves are the highest though, and we all desperately want this treatment to be the answer to our prayers, so if I can have more better days and nights than not, then I have won the lottery.

Half a life continued

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.  (

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,


Who else is out there?


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…

Hit by a bus…..again

Good morning! It was a long evening, as I didn’t arrive back on the ward until 5.40 and we got home in time to watch Strictly with fish and chips.

The procedure was done by a different set of doctors, but the ward nurses and ODAs were familiar faces from a fortnight ago.  Initially no one seemed to know what type of device would be implanted, but then the Medtronic rep, a young man who is very personable & rather easy on the eye (politically incorrect to say, I know) popped in to have a chat.  The upshot of this is that, after a further chat in theatre with Dr Pang, they decided that I could have the rather pricey rechargeable neurostimulator – the implant is slimmer and if cared for correctly it should last longer (9 – 10 years dependant on usage).  Dr P switched me on in recovery and the good news is that the coverage on 4 – 5 volts continues to cover my entire pain area, and I am allowed to use it immediately.  I believe that with a rechargeable device the normal practice at St T’s is that the recipient cannot use it until they have been seen by the CNS in outpatients.  Hope no one gets in trouble – particularly me!IMG_0769

The down side is that I feel pretty rough this time.  On return to the ward my blood pressure was in my boots and I continue to feel nauseous and light headed.  My back is ok if I remain perfectly still…..ha, ha, ha! Not really surprising, I hear you say, as this is the second time in as many weeks to be cut, pulled and pushed – thank goodness for the nursing pillow that fits round me and prevents anything from touching me!  I now have enough drugs to start my own pharmacy, but the anti inflammatories were very welcome last night – the prophylactic antibiotics not so, but I have prepared for their unwelcome side effects this time with natural yogurt and Canesten.  Enough said…..

I actually slept quite well, although I did have some oozing from one of the wound sites – step forward nurse Duncan.  So begins the recovery process, including the agonies of waiting for the family to clean up, cook and take over household duties that they can’t see need doing!!  Then there is a very thick user manual to read before the electronics student gets his hands on it…….

Hmmm, too late!  He has found the pile of early Xmas pressies I was sent home with, including a very swanky camera style bag for the charger, pads and leads.  Now I have to contact my insurers – household to cover the devices for £2000!! & motor to inform them I am wired – literally.  I wonder how many of you saw the TV series Humans?  I can feel the stimulator beneath the skin – is this how it feels to be a Synth?!!image


Another Long Day

Can you believe it! We were told to arrive at 10 am this morning so guessed I would be later on the list, but still left home at 7am to beat the traffic.  When we arrived on the ward, the same nurse said exactly the same as last time “I’m so sorry, but they’ve got you in far too early, I’ll get you a glass of water”. Aghhhh

We had already killed an hour, having driven straight through, in the Guy’s hospital cafe where Duncan enjoyed a breakfast deal, munching his way through a bacon roll with a cappuccino.  Never has sausages and bacon smelt so good – all because I couldn’t eat. I am now desperate for a cuppa – nothing new there my kids yell.

Talking of kids, I was just being admitted when my phone rang flashing up the name of my middle one’s school. Oh no, what has he done?! “Mrs Saul, I have your son in the office with a migraine – he really needs to go home”, “but I’m in Guy’s hospital waiting for surgery…” Good old grandad to the rescue for the second time this morning, having already dropped his granddaughter to the bus stop as she was running late!

So the wait goes on, and I’m following in the footsteps of London fashion week in my delightful gown and stockings…..image


NBMSo nil by mouth now, or more accurately clear fluids until the morning!  Feeling a bit nervous again, hence still awake, but also allowing myself to feel some excitement.  Watching TV this evening, it was fantastic to be able to control the pain at the push of a button.  Mum and I had fun earlier washing my hair backwards over the basin – there was surprisingly little water on the floor and the stimulation definitely helped!cartoon

I first heard the expression “spinal cord stimulator” in relation to me in a pain clinic about 8 years ago, with a price tag attached at £25,000! Wow, I didn’t really believe it would eventually be me.  I have added a page with some info, videos and links about the device.

Next report – Guy’s hospital!!

6 Hours Straight!

I slept for 6 hours straight last night! My pain buddies will appreciate just what a huge deal this is.

When we were on the 2 week inpatient programme earlier this year, we very quickly discovered that everyone in the group suffered from sleep deprivation.  The effects of lack of sleep combined with constant pain are draining and far reaching. Have you noticed how everything seems so much worse in the early hours of the morning?  Every one of us struggled to be in our clinic room at the start of each day, but we all understood the tremendous effort required. I have seen the looks when I try to explain that I’m unable to make commitments first thing in the morning: never able to predict when I will be up all night and then waiting for medication to start to kick in.  When one of our number at Tommy’s managed to crawl down one morning, but had not slept and was in too much pain to even change out of her pyjamas, we all got it.  Most people don’t and that is just the way it is.

I managed a visit to my parents house this morning to see my godmother for her birthday.  The timing tied in nicely with my son’s driving lesson, so I suggested that he drop me off. After all it is only up the road.  The response was that it would take the whole lesson just to get me in and out of the car.  Fair point, I guess, as the car is a mini!  Whilst the surgical pain was quite severe this morning, as I believe I didn’t move during that 6 hours, a dose of paracetamol helped to ease the feelings and thus I let the stimulator take on the cold and wet weather

Cold, damp conditions are always bad for me, increasing both the back and leg pain.  So I have had my Medtronic Stim on for longer periods,at about number 4,doing battle for most of the day – and winning! The relief to be able to squash the pain to something that I can cope with is a very emotional experience.  Another friend has already had the full implant and says the same thing, that after years of pain the touch of a button could be the beginning of something new.

Apparently I return to St Thomas’ tomorrow for a follow up! A letter arrived this afternoon – good job the post wasn’t as late as it often is.  It all feels quite speedy, but equally I’m eager to have a plan for the next stage of the procedure as it feels like life is on hold for the foreseeable future.

Thanks, Tina, from Pain Support for agreeing to share your experience here. I will add a page with some information about neuromodulation, the St Thomas’ programme, the different trials, devices etc over the next few days.  Meanwhile fingers crossed for another 6 hours, or maybe even 7!

Day 1 R&R

The procedure was one of the strangest experiences – and lets face it, I’ve had a few ops over the years.  The first difficulty came when the operating department assistant (ODA) asked me to jump up onto the operating table – and then lie on my stomach.  A near Olympic feat for someone with back pain, a dodgy leg and foot drop!!  The consultant allowed me to choose which type of trial I opted for – explanations later! – and so began the placing of tunneled electrode leads into my back with arrows drawn in marker pen.  I was asleep for the actual placing of the leads and then woken up to assess if the electrodes were in the correct area of the spinal cord nerves –

“can you feel that, Claire?”

“No…” still feeling very groggy

“How about now?” to an immediate pulse of the strongest pins and needles you have ever felt.

“Yes, but it is in my stomach and around my ribs” Fully awake now!

“Think we need to change something here, team!”

And so the currents to the various electrodes were played with until the feeling was covering my leg, my foot and my back.  I even have some coverage in my good leg and this is with just one lead.  For those of us who have been patients on the St Thomas’ pain unit, we know that this is something special having been warned that it may not be possible to cover pain in more than one location.  In recovery I was reminded how to use the temporary battery and charger, before returning to the ward – I was in theatre for about two and half hours and another half hour in recovery.  Of course thoperation_1533715e medics never commit to a timings but I believe that a trial can take anything from an hour to several hours on the operating table.

Back on the ward I needed to complete every surgical nurses’ post operative list – the obligatory cup of tea and sandwiches – Ben, you were dead right – check, trip to the toilet – check, be up and moving – albeit slowly, check!  Then TTOs (medication to non medics – antibiotics and pain killers) arrived and I was free to go.

The trip home to Surrey on Friday evening through rush hour London traffic was not easy.  My back was starting to really hurt from the surgery as the operative drugs were wearing off, but I used the stimulator for my chronic pain – it is important to be able to distinguish between the two, not to use too much medication for the surgical pain and thus to be able to understand if the stimulator is working for the chronic pain.  Clear as mud to some of you.

My wound was bleeding after the journey, but I talked nurse Duncan through applying a new dressing over the original – it was drummed into us that it is very important not to remove the original due to the risk of infection – enjoyed some dinner and settled later for the night.  I used the stimulator before settling, as they should not be left on whilst asleep, and had a pretty good night for me!

Today has been quiet, a bit sore and I have been experimenting with the stimulator.  So far, so good – the feeling is the strangest thing, and until the lead beds in a little it is quite positional, so I am experiencing sudden surges of current. At the moment I’m wary to say whether it is definitely going to help me, but I think that for me the electrical sensations are masking the nerve pain and are preferable.  So fingers crossed, everyone, I’m cautiously optimistic.

Thanks for the words of support – I will post some more info about the actual spinal cord stimulator for anyone interested, and some musings about living with chronic pain, along with updates on my recovery and the future plan of action.cropped-girls.jpg

It’s going to be a long day……


We arrived at Guy’s at 7.30 am to be greeted by a corridor full of fellow chronic pain sufferers.  It never fails to amaze me how much laughter can be generated by people who are suffering so much. That old expression that “you’ve got to laugh otherwise you’d cry” has never been more true!  Anyway we are here for a variety of procedures, but those of us for neuromodulation are honoured to have individual en-suite rooms which are more reminiscent of a private hospital than the jolly old NHS.  The anaesthetist has been – I think I might have frightened him with mention of shoulder dislocation with my EDS – as has a theatre nurse and most recently a technician who will turn the device on in theatre.  Then another nurse popped in with the ominous words “I really don’t know why they brought you in so early!” – uh, oh!  So it looks like being a very long day as I am last on the list, following 3 full implants and expected to go in at about 3pm.  I have been granted one final glass of water, hurray!

Duncan has gone in search of coffee and bacon, so I will attempt to add to Pain Pals.