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Let’s Get Physical

Thank you to everyone who has been emailing, texting and messaging in whatever form words of encouragement!  To those of you taking the time out to visit here and read my ramblings, I do appreciate it.  Just don’t take it personally, please, if I haven’t sent a specific reply……firstly my brain is full of opiate shaped memory holes, and secondly our fantastic mobile provider is doing a cr.p job of delivering any sort of mobile signal!!

Another day, another week and child number 3 is already counting down to half term……they’ve only just gone back to school.  I need time to get back on my feet without a house full of loud, smelly teenagers all day, every day.  To be able to walk into the lounge and for the sofa to be free of long, skinny jean clad legs lolling – can someone please explain why teenage boys are unable to sit upright in a seat, instead preferring to extend their limbs over any part of said seat except the front of it?!  I need to be able to walk into a room and for it to look just as it did when I left it; for my hallway to not resemble a sea of shoe shaped boats along its entire length; for the crumbs and dishes created at breakfast to be absent until dinner time, or earliest tea time rather than the one endless meal break of weekends and holidays.  So no, I’m not counting down the days to half term and then there is that promised trip to Westfield…..

I am feeling a bit more mobile, but just as I think I’m off and running, wham, that surgical pain hits me as a reminder that – I mustn’t bend, stretch, lift, twist, etc, etc.  It is important not to mess up the placement of the electrode leads at this stage as they won’t be securely anchored until scar tissue has formed around them.  Lead migration is a potential risk and can result in changes in the stimulation and a reduction in the pain relief.  So, no picking up dirty underwear from bedroom floors or emptying the bottom of the dishwasher or stretching up to the washing line.  I never dreamt that I would make such good use of the long arm, picker upper disability aid that I inherited from my grandad.images (2)  Who on earth thought it was a good idea for a woman with a bad back to have a range cooker rather than an eye level oven?  How do I get that casserole into the oven?  A wonderful band of friends cooked and delivered meals on wheels for the family after both my spinal fusions, but, as I had to explain to the kids yesterday whilst trying to prepare a meal for 5, they are all older and their dad is here this time round.  Deaf ears, talking to myself………

The stimulation is definitely working.  When I turned it off at lunchtime the difference was immediately palpable as that same old familiar feeling worked its way down my leg and out through my toes.  I’m not sure that I will be lucky enough to have a marked reduction in pain when the stimulation is turned off, but at present I am just so thankful that I have a means to disguise that debilitating feeling at the touch of a button. The boys and Duncan were invited to our neighbours’ gym yesterday – I kid you not, they have a home office at the end of the garden that is kitted out with proper gymnasium equipment.  Said neighbours have very kindly given us a key and told the boys to use the gym whenever they wish – no, boys, that does not include putting the dog on the treadmill for his walks!! – whilst I want to begin to experiment with more activity whilst switched “on”, I think I’ll have to pass on the gym for this month!!download (5)

Apples & Pears

Last night I dreamt of Manderley……..oops, getting carried away and a tad confused, no Daphne du Maurier am I.  But I really did sleep last night and dream! Slightly odd dreams, but I only woke once which meant I managed a 6 hour stretch again.  No mean feat as the implant site is really painful.  But to wake in the morning, after so many years failing to sleep, and to know I have had hours of unbroken sleep is just wonderful.

I had another slight bleed last night from a different area, so Duncan has added another dressing to the patchwork.  One problem of course is, that as the blood dries, it becomes very stiff and this makes the whole area even more uncomfortable and itchy.  I hope that I will be given some instructions tomorrow about outpatient appointments, dressing change, suture removal – anyone else out there who can tell me if I’ll go back to St T’s or have it all done at my GP’s? Of course, I do have access to my own supply of nurses who did all my dressings after my last surgery…..

Something I need to clear up is that yesterday’s comments regarding the household chores was directed completely at those living under the same roof as me!!  I will quickly point out that yesterday help was on hand in the form of my fab mum, otherwise known as Mrs Mop in Dad’s post, who not only tackled the dog hairs and bathroom, but also braved her granddaughter’sbedroom.  And that is even worse than her grandsons’!!

Duncan spent the morning in the garden, enjoying the last of the summer sun and mowing the grass, for what he sincerely hopes will be the last time.  He gathered cooking apples and pears – I don’t exaggerate when I say that the tree is groaning under the weight of pears.  With my Medtronic Stim switched on, Scotland v USA on the TV, I perched and I started peeling!  3 crumbles and a pie later, I was pretty pleased with myself. It was the surgical pain rather than my pain that finally got to me, so I’m feeling very positive.  The only fly in the ointment today is that I am unable to turn “on & off” with just my programmer “MyStim”, having to use the additional antenna attachment instead.  This may be to be expected whilst the wound site settles…..or I might be doing something wrong. Anyone out there with any experience or answers?

So to the other “apples and pears” as I wend my way to bed and hope for more sweet dreams tonight!

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!!

Ready, steady, go……

Good morning  – many apologies for those of you awaiting an update last night, but I was simply shattered!  The journey home in rush hour traffic was not great.

Mum and Dad took me back to Tommy’s yesterday as Duncan had an appointment elsewhere.  The journey was considerably easier than last week’s and we arrived in time to treat ourselves to hospital delicacies for lunch.  Chilli con carne and pasta bake – both of which were considerably better than the meals we were served on the course (more of that on page about INPUT).

So the important question – what did they say?  I had another dressing change and am delighted to report that the wound and MRSA swabs all came back negative, and whilst more wound swabs were taken in line with pre surgical protocols, the nurses were confident that the wounds are healing well and appear infection free.  Every dressing change brings renewed itching….I will be so pleased to see the back of mepore dressing tape!  Back in to see the CNS, Steph and this time 2 doctors.  We obviously had a chat about how I felt I was getting on, what differences I had noticed, pain coverage and pain relief.  My stimulator was “read” and the team were able to see how much I had been using the device & the level of stimulation I needed.  The good news is that Steph announced she has booked me in to return to Guy’s tomorrow for a full implant – hurray!  I am delighted and relieved in equal measures!


After a couple of relatively settled days, tomorrow I return to St Thomas’ for an outpatient appointment.  This time I have some idea what to expect – another dressing change, meeting with CNS and doctor.  The doctor called me yesterday to touch base and check how the weekend had been, asking the usual “on a scale of 1 – 10, how was your pain before the trial and now”; as a nurse I always queried the worth of a pain score done this way and now I question it even more,  A debate for another day!

Tomorrow a decision will be made regarding proceeding to the full implant or ending the trial and removing the electrodes.  I keep asking myself if there could be anything that will show up on my stimulator trace that would prevent the procedure from going ahead.  Could i jinx it?  I am nervous now as so much is riding on this……………………

Half Way with some late night ramblings

I wrote this at half one this morning and wasn’t sure if my ramblings should be published, but here goes……

The months between the residential course and the phone call with a date for the current stimulator trial have felt pregnant with emotions.  These have ranged from optimism to fear, caution to hope, an overwhelming, crippling realisation that this procedure will determine how I am able to live my life.  Then there are the hopes and expectations of others, all only wishing for the best for me, but some feeling impossibly high, maybe even untenable.  Failure does not feel like an option, but is a very real possible outcome and one that I have to face head on.  The pressure for a good outcome feels enormous and I am terrified of letting everyone down.

My physical condition has continued to deteriorate and I found recovery after the last surgery hard.  I had been determined after the first fusion that I would not have another operation, but then I felt pressurised into having a revision before anything else would be considered.  There comes a point where the patient with any chronic condition has a better comprehension of their own body than the medics around them.  I have always been very supple, or bendy as Dad would say, double jointed is another popular name used, but was only given a formal diagnosis a couple of years ago – probably because there was no formal diagnosis when I was a child.  Ehlers Danlos syndrome is a genetic condition which affects the connective tissues within the body, from loose joints & dislocations to detached retinas to more complex issues of the cardiac connective tissues.  So it was with some alarm that I listened to the specialist consultant at University College, London tell me that someone with my condition should not be having a fusion of any joints.  The rationale made perfect sense – a fusion of the vertebrae would serve only to destabilise the joints to either side as they became yet more mobile in an attempt to compensate for the site of the fusion.  The issue for me was that I had already been fused!

Then there was the occasion after the most recent extended fusion, when a physio declared that “we really needed to get some movement back into the bottom of my spine”, and that “this isn’t actually  nerve pain”. Excuse me?  Wasn’t the idea to prevent the spine from moving, hence the screws and concrete filler; as for a definition of nerve pain, I will take the consultant’s view of a damaged nerve root in combination with the feelings experienced in my body as the definitive.

I have suffered an increasing number of falls due to my leg caving in beneath me on top of an existing foot drop. Two stand out in recent weeks, the first of which occurred when my husband and the boys were away, leaving me home alone with my daughter. I had just gathered the washing in from the line on an August Saturday evening when, whoosh! Over I went straight down onto my coccyx on the concrete patio. The dog came pelting down the garden, I didn’t know that he could run that fast, and my daughter came running out.  She couldn’t get me up and ran along the road to fetch my friend and her 19 year old son, who duly arrived back uncertain what to expect.  At this moment the tears came and I felt I couldn’t go on –  my friend told me the next day that it was at this moment that the realization of the enormity of the situation hit her: just how much this was affecting me, both physically and emotionally.

The second big fall came the weekend prior to my hospital admission.  We had arrived at a hotel in Bournemouth for a weekend with family & friends and a dinner dance on the Saturday night.  The journey was a typical Friday evening – roadworks, heavy traffic etc etc, and despite our regular stops en route, by the time we drove into the car park I could no longer feel my leg or foot.  Diners in the hotel restaurant were treated to an almighty yell, to accompany their steaks and wine, as my leg failed me and, as if in slow motion, I toppled over and landed full length on my right side on the hard ground.  My brother was watching from the first floor and said that the scene had resembled something out of a Monty Python sketch, because my daughter ( 5 inches shorter than me)had been helping me but as I went over, she was too light to anchor me down – and instead her legs shot up into the air and she looked for all the world as if she had jumped me!! I couldn’t move for pain and  shock – talk about wanting the ground to swallow me.  Things were to go from bad to worse as  I discovered that I hadn’t picked up enough medication for the weekend and I began to feel slightly panicky.

So began my worst night – Duncan’s also!  Obviously I had really hurt myself from the fall, but just didn’t want a fuss.  But my leg pain was already going in overdrive during our meal and by the time that we went up to our room, I was feeling quite stressed.  When this pain takes grip there is nothing that will relieve it.  There have been nights like this in the past – I pace, I watch an amazing amount of rubbish TV on the ipad, I drink tea and at home I talk to the dog.  But this night was different and by 2.30am the only feeling that was completely engulfing me was an inability to carry on.  The pain and related irritation in my leg was at a level that I could no longer cope with, and once the tears started I could not control the sobs wracking through my body with almighty gasps. I’m not sure that anyone other than my fellow chronic pain sufferers will be able to have a grasp on the desperation I felt.  If my leg could have been removed I would have used a hacksaw myself; in those quiet hours of the early morning it is very easy to question oneself, and I can honestly say that I made a decision that night that I can’t live another 40 years like this.  Duncan made a more immediate decision and so it was at 2.45 am that the hotel porter was letting a deranged sobbing woman dressed in a nightie and leggings out into the pre-dawn morning.  The actual drive home was easy, but became busier as we approached the M 25 (what are all those people doing at 4 am??).  However we learnt the meaning of climbing the walls that night, as I experienced the worst car journey of my life  and was literally hanging onto the ceiling fabric from my nails.  I felt like I had gone completely mad.

Duncan did settle me eventually, and the funny side to the tale was that our eldest didn’t even realize we had arrived home until I walked into his room at 10 am that morning!  “I thought you went to Bournemouth!!”  This really fills us with confidence for future trips away……. We even managed to drive back for the dinner…..and Sunday was a beautiful day.FullSizeRender (2)

But take it from me that there is an unseen, unheard army of pain sufferers living out there.

Shop ’til You Drop

I’ve just been told off by my brother for slacking and not writing up a post yet for yesterday. So for a quick update whilst I watch Japan on the way to victory over South Africa.  Who knew that the Japanese were so good at rugby?!

This weekend marks the birthdays of 2 special teenage girls – our daughter and her best friend (BF), who turn 13 & 14 respectively.  BF’s birthday is today, and because daughter is a year ahead of herself at school, BF will tease her mercilessly today that she is now 2 years older than her – daughter’s birthday is tomorrow.  So yesterday saw me braving the shops for the first time during the trial with Duncan and my mum for back up – believe me it is needed when birthday present shopping for teenage girls.

I had a much better night’s sleep on Thursday and set off feeling optimistic.  The new dressing had remained intact and has not caused too much grief, and I borrowed a little bag to carry my battery pack and controller in.  But then we arrived and so the rain started, the temperature dropped and the high street became slippery.  The worst weather for chronic nerve pain and initially I nearly lost my nerve to continue.  But I was switched on – the new expression in our house – and needed to really put this thing through its paces.  I am delighted to report that the stimulator successfully kept me comfortable as the tingles seemed to do direct battle with the cold.  Normally the cold and damp causes extreme, sharp nerve pain and I feel chilled to the bone, but when the stimulator was turned on, it felt as if the pain dial had been turned down and the constant tingling kept the cold at bay.

It is quite emotional after so many years in pain, to suddenly feel that i have some control back and may be able to turn the dial down at the press of a button.  Sadly the same cannot be said for the outcome of the shopping trip!!  The new plan is that tomorrow we will tell both girls that their birthday gifts are a trip to the Westfield shopping centre with some money to spend and lunch.  What are we thinking???  Warning, pain pals, neuromodulation can seriously damage your capacity to think straight!

And in case you didn’t hear, Japan won! That would be like Wales beating Brazil in the football world cup……..