Those little things we don’t mention

This week I should have been back at Tommy’s for an appointment at the Joint Pain and Urology clinic – it was cancelled due to a shortage of doctors.  I’ve touched briefly on one of my pages about additional problems caused by nerve damage in the back, but even for para & tetraplegics with the very worst back injuries, as a society we really don’t like to mention the more personal bodily & sexual functions that can fail as a result.

It stands to reason that when a back is broken and a spinal cord severed, that any part of the body that functions from nerves below this point will no longer work properly.  So equally if nerves are damaged beyond repair, bodily functions become abnormal too.  More of this on a “page”, but when I was seen last Christmas for the first time at St Thomas’, Dr Palmisani was the first consultant who took my comments about my bladder seriously.  So seriously that he set the wheels in motion for a urology referral, to check whether I had the dreaded female stress incontinence or something linked to my back.  I knew it wasn’t S.I. – in my experience many male doctors assume that any woman with children will have a damaged undercarriage from childbirth – “I’ve had 3 C sections” I told him “my undercarriage is intact!”.download  I think that I already knew what the problem was – lack of sensation, going all day with no urge to “pee”, UTIs and then being unable to go.  “It’s your age” friends have said, to which I thought “I’m not that old!”  But earlier this year I was seen at Guy’s by a sympathetic female urologist, who immediately said that my symptoms were classic for the level at which the nerve damage is. She also mentioned that there are 3 professions who develop an ability to hold on for long periods of time – bus drivers, cabbies and nurses – so I was already half way there. The bladder stretches beyond normal capacity because the nerves no longer signal that it is full to the brain.   I believe the non technical term could be “baggy balloon bladder”.images

The tests that I have undergone I will detail on a separate page – not everyone will want to know! – but at least with the indignity of childbirth you walk away with a baby at the end; after this indignity I just walked away with a box of catheters and a lesson in intermittent self catheterisation!!  When I had the scs trial, Dr Palmisani suddenly put it to me that he was thinking of speaking with his urology colleague with a view to using an electrode or two to stimulate my bladder……it all sounds slightly experimental and unfortunately the different specialities weren’t able to link up before the stimulator was implanted, but it could mean that somewhere down the line there may be more surgery, a tweaking of my implant programme and a buzzing bladder!tumblr_n5hn3yEnV41t7pikho1_1280

Final thoughts go to my mate Jean who has had her full implant today………

Sorry to have been away……

It has been over a week since I last posted and during that time our household has been hit by a variety of ailments from migraine to ladies’ problems to chest infections.  The yocomic conungest is into her second week of half term – 2 weeks!  I remember only getting 2 days for one of our half term breaks – the middle started his half term with a trip to Comic Con London – grown people running around dressed as comic book characters! – and I believe that our student is on a project week before reading week next week.  Reading week indeed – the university term only started at the beginning of the month.
The last week has been a bit bumpy for me.  I can safely report that the stimulator doesn’t help certain pains of a female variety, but I already knew that these symptoms exacerbate my back pain and so I spent a couple of miserable days at the end of last week.  It was probably rather ambitious to imagine at the beginning of the week that I would be able to attend governance meetings on consecutive nights – but I did manage the first one.  I won’t lie – it was a struggle.  Sitting for several hours in an upright seat and trying to concentrate and participate was much harder than I had anticipated, but I consoled myself that I was only just over 3 weeks post op.  But I really wasn’t well enough to attend the training with my own governing body the following night – I’m really sorry that I probably picked the wrong session, fellow govs!

As I become more mobile again, I am having to learn how I need to use the stimulator to best help me.  The change in weather is always a problem for most chronic pain sufferers and is also a problem for those with added joint issues like myself.  I know that I have already posted that the level of stimulation has changed since the permanent implant,  and I am probably a bit paranoid about increasing the voltage level.  When you have taken a mixture of strong medication for years, and you have been trained in pain control in a previous life, it is very hard to lose the mentality that says your body becomes tolerant  and therefore requires more and more for the same level of relief.  Of course in the case of opiates this is true to an extent, but please don’t be mistaken for this being the same as addiction – as hospice nurses we struggled every day with the false belief that it is better for someone in pain to resist drugs as they may cause addiction.  In the majority of cases all the time an individual has pain, the correct analgesic will be used by the body like a key in a lock to fit the pain receptors and thus inhibit them.  Finding the correct key for the lock is not always quite so easy…. Of course this does happen to a degree with the stimulation and thus with the low frequency stimulator that I have, the hospital instructs patients not to use it continuously in order to avoid creating a new “norm”.  Does this make sense?

I managed a dog walk at the weekend with Duncan and am happy to report that I was far more comfortable with the stimulation switched on.  My mobility and stamina remains hampered by the pain and stiffness at the fusion site, but it is great to be able to have some control over the leg pain.  I am still playing with levels in order to sufficiently cover my foot – I might just have to make do with a nice, new pair of boots!!  Saturday afternoon provided a perfect opportunity to sit down and recharge my battery in front of the first semi final of the rugby world cup.  Not sure I’ll ever get used to saying I need to charge myself up, and I must stop talking about being “turned on” or “off” as the former has produced some very quizzical looks……..

Time for a photo op – no, not related to that last comment!! – I had let the battery run down to 50% as instructed and the charger had already been powered by the mains.                                                        imageimage

The above pictures show the positioning of the paddle over my stimulator and the charger – the paddle is very reminiscent of the paddles on the defibrillator that used to be on resuscitation trolleys, although it doesn’t deliver such a hefty charge!

The charger is showing:

top row: my stimulator turned off, the volume, my battery at the half full mark

middle row: the imagepaddle making contact with my stimulator,

bottom row: the level of connectivity between the paddle and my stimulator, in this case it is poor with only 2 boxes filled out of 8.

The charger is now showing full connectivity between the paddle and the battery as all 8 boxes are filled in.image  Whilst in theory it is possible to be ambulant whilst the charger is strapped to your back, in practice I would say that the level of connectivity is quite positional and thus use the couple of hours it takes to watch a film, read or watch the rugby!!  It was a great match.

A gaggle of girls has just arrived home after a day out in Brighton, so time to put the pizza in the oven and prepare for a very giggly sleep over.

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.

Bad day

Back to some more personal musings this afternoon.  I woke up after a pretty good night in pain – the type of deep pain that runs the whole length of my leg and foot and is worsened by the cold.  In this case it is the change in weather temperature, but it can also be down to cold air conditioning.  I have really struggled to get on top of the pain and felt pretty low this morning when I couldn’t get enough relief with my Stim 😪.  A shower and hair wash just about finished me off, with that awful period of time that I described before when I step out and feel physically ill.

So I know I have been horrible today – sorry to those who have been around me.  The engineer is back for a driving lesson, and spreading his horrible cold germs!  Apparently he has told his tutor that his presentation for this term will be about neurostimulators, and he has a Guinea pig to show off.  One team member of the electrical engineering department at UCL has apparently been doing some research work into the speciality.

Thought it was time to show a couple of photos – not massively pretty, but I’m less blue now!imageimageimageThe Stim programmer has to be held directly in contact (above) with the implanted stimulator site (left).  The top 2 inches of the long scar is where the electrode leads are implanted – the scar beneath runs down to the natal cleft and is from my previous 3 surgeries.  It is keloid, over over granulated – a common problem in Ehlers Danlos due to collagen irregularities.

Blast from the Past

I stepped back in time yesterday, when I visited Charing Cross Hospital.  No, I wasn’t the patient for a change but giving moral support in the same way that it has been given to me in bucket loads recently.  The last time that I was there was on my last day of work on the head and neck unit in 1995, OMG 20 years ago!  So much has changed superficially in the reception and the initial public areas with the advent of Costa etc, but as we started to trudge the corridors trying to locate the clinic,  nothing really has altered at all.  CXH

I already had a back problem when I started work on ward 7 North in 1991 and the job interview was the easy part.  Every nurse had to go through Occupational Health and who wants a nurse who has undergone major back surgery recently?  I had to literally jump through hoops to show that I was fit enough, strong enough to manage the rigours of a 32 bedded surgical ward – a very specialist surgical ward for head and neck, maxillary facial and ENT surgery.  It was really intense work and exceptionally busy as we were a regional unit for the type of surgery for head and neck cancer that other surgeons would close the book on.  The team consisted of 5 consultants, 2 Senior registrars(consultants in waiting in those days!), 2 registrars, 2 senior house officers and our nursing team of 2 sisters, 8 staff nurses, and our wonderful auxiliary Mabel & cleaner George.  We worked hard, but then we played hard – as a team.  OK, the consultants only really came out for major events like the Christmas party, but the rest of us socialised regularly.  At times the ENT outpatients was even known to be transformed into a party venue on a Friday night!  We worked long hours, the nurses worked a 7 night shift pattern every 4 weeks, the junior doctors were constantly on call and we dealt with some horrific cases – but we were a great team who respected each other.  Mr Cheesman, the main head and neck surgeon to whom the tricky cases were sent, would not send his major surgical cases to ITU, saying instead that “his” nurses gave the
images (9)best care! A huge compliment.

I do believe that this sort of team work is a thing of the past – the days when the cleaner was as much a team member as the sister, and you could eat your dinner off the kitchen floor.  For then the services started to be put out to tender and standards altered.  My experience as both a patient and a relative at some district general hospitals across the country has been poor and in a couple of cases appalling in recent years.

However my faith has been somewhat restored by St Thomas’ and Guys’ – they may not be quite like my old unit and I may be reminiscing with rose tinted specs.  The pain unit is specialist, but it isn’t just within this unit that there is a difference in the attitude of the staff – the staff generally are patient focused, keen to please, happy and helpful.  I’m afraid that even my old stomping ground didn’t match up yesterday as we were passed from pillar to post.  But my stim was invaluable and I probably kept it switched on for a lot longer than I should have – eventually my back and leg got the better of me, and Duncan had to leave me in the sitting room of the wrong department as I couldn’t manage another step!  Shame that I don’t have real bionic woman powers…..


Blue badge

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

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

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

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

Perry nice garden

images (7)Sunday was a beautiful day and the garden called, loud and clear, as we have an abundance of pears all over the grass.  Obviously picking up pears was not going to be my job, but that was easily delegated – with some resistance.  Duncan has been doing a good job of turning the garden waste wheelie bin into a perry cider vat. I thought maybe I could manage some light gardening on the raised flower beds in our very steep garden.  It is so hard sitting back and not doing jobs that I can see desperately need doing!  Gardening has been a tricky one ever since my back problems came back to haunt me as, other than the grass, I have always been the gardener with some help from my dad at times.  So it has been really hard each summer since I stopped work as the rest of the Saul household are unable to understand the concept of digging, weeding, hoeing, cutting back and generally cultivating the garden.  There have been more rows about the garden than anything!

So I turned on my stimulator slightly higher as there was a nip in the air, and headed out to do some weeding.  The cold was irritating my nerve pain immediately, but the stimulation meant that I was able to stay outside for a little while, even if I wasn’t able to actually do much! The digging and reaching was actually beyond me and I was exhausted so quicklpearsy – I guess that I have learnt my lesson as everything was so painful last night.  Everyone always says we medics make the worst patients!  Guess what I spent the afternoon doing?  Watching rugby whilst peeling and cooking pears, pears and more pears.  In fact if anyone local would like some just shout!!

Today I have really struggled with pain and my wound sites are so sore.  The implant site has become very bruised and it is possible to see the outline quite clearly beneath the skin – it is really sore if anything catches it.  I hope that with time the tissues will settle and no longer be painful, and that adequate scar tissue forms at both sites to hold the stimulator battery and the electrode leads well in place.  It is a tricky balance with the pain control at the moment and one factor is I’m on a reducing dose of oxycontin – double strength synthetic morphine, known as hillbilly heroin in the States – so I’m unsure quite what causes increases or decreases in “my pain”.  At times the stimulation, if not strong, actually feels like it is adding to it as my leg feels alive with movement, and I just need everything to quieten down.  Strange when at other times, it kills it dead!  I have to emphasise again, it isn’t a cure.  But several of my friends from St Thomas’ are due to have trials imminently and I don’t want to discourage them.

Meanwhile we have stewed pears, poached pears and a rather good pear and chocolate upside down pudding that I rustled up………

Gadget geeks unite

The trip back to hospital is never that easy as the journey, whilst not far in distance, can be a nightmare in minutes. Of course it is easy by rail to Waterloo, if you are able to jump on and off a platform, negotiate stairs & crowds and walk for miles to use disabled access or lifts.  I can no longer do the above with any degree of ease and climbing aboard a train is akin to mountaineering for me.  If you have never used the rail or tube network with a disabled person, you will not have noticed that in order to use the lifts or disabled access, you invariably have to travel 3 times the distance either via tunnels or platforms to reach the same destination.  Hard at the best of times, now just a no go, so the car it is!

Fortunately it was Friday yesterday so the traffic was lighter and we were entertained by Mr Chris Evans talking his Radio 2 guests – Tom Jones, Brian Adams, Steve Coogan and Stellan Skarsgard – into being his guests for the Christmas edition of TGI Friday.  The appointment with Steph, the CNS, was to ensure that I have a good understanding of recharging my battery – that has so many double entendres doesn’t it!  So when Steph asked me to talk her through the equipment and show her how to use it, I was confident having recharged the previous night.  Those of you who know my other half will know that he is a gadget man and more than that, he is OCD when it comes to said gadgets.  When he was working, our kids used to joke that on arriving home from work, before he even made contact with us, he would check his hifi/TV equipment in the lounge and then check his coffee machine in the kitchen.  Our 16 year old now tells people that his dad spends his days polishing his coffee machine and screens of all shapes and sizes!!  So there was a meeting of kindred spirits when I took the equipment out, and Steph exclaimed in excitement that it had been beautifully placed in the protective covers and the attachments secured correctly.  A conversation then followed about the relative merits of leaving film screen protectors in place on screens – they took their phones and cases out – or regularly cleaning them.  Gadget geeks unite!!

I have had a couple of concerns that I put to the nurses: I have required a higher voltage setting on the implanted stimulator to gain the same level of coverage and parasthesia as with the trial one; the parasthesia is very positional and  I experience a huge range of feeling  and coverage as I move my spine; I can’t help worrying that if I have to turn the voltage up to mobilise, when it is cold etc, that eventually the stimulator will not mask the pain.  Steph assured me that everything is within normal parameters – if I was jumping from 2 to 8 volts, then she would be concerned, but the amount that I am using is not a problem.  Phew!  images

To say I was exhausted on our return home is an understatement.  I couldn’t keep my eyes open, but then had a really unsettled evening when my pain left me feeling so agitated that I had to turn the stimulation off.  This did cause a slight panic, but then I remembered what I have read on various forums from othe scs users and not everyone has good days everyday.  Similarly after a trip to the local shops this morning, I had to remind myself that it wasn’t that long ago that I had 2 surgeries in quick succession and they take their toll.

I did try to wear some different trousers out this morning and failed miserably as the low slung waistband caught the implant.  OMG, in kid speak, did that hurt!!  It is still throbbing now – remember it is only 1cm beneath the skin and is easily felt.  (Ben, I get it now!!) So I will have to continue in trackies for the forseeable future as healing occurs – and then I can start on the huge amount of weight I have gained, (6)

A Night Out with Oscar & Ernest & Dunc too!

I managed a trip to the theatre last night.  Well actually it was a live screening at the cinema – David Suchet in Oscar Wilde’s The Importance of being Earnest.  The tickets were booked for a friend’s birthday – I took a chance with the date as these things are only broadcast on the one night, and typically my friend wasn’t able to come due to a family party……and then I was called for surgery.  Duncan was lined up to come (not sure he was really up for it, but he did as he was told! I’m in trouble now) and Mum was on stand by to accompany him.  After a funny turn in the GP surgery the day before, I wasn’t convinced I could manage it as things always feel worse in the evening, don’t they?  But the time came and we found ourselves joining an audience of a certain age, us being at the lower end of the range, in the queue for coffee and popcorn. 

The play was all that Wilde should be, with a great turn from Mr Suchet in his drag attire of corsets and petticoats.  Comic timing is everything in this production and I think that the audience in the cinema actually has a superior sense of this as the camera allows for close ups of the wonderful expressions on the casts’ faces.  How did I cope? Well the play was perfect in that it is written in 3 acts, so there were 2 intervals, and I kept the stimulator on for the duration and was pretty comfortable! It didn’t help at the end of the night when I stood and the feeling in my leg did its usual disappearing act – a very helpful usher saw Duncan half carrying/dragging me along and let us out the back door – but I felt less agitated and was able to sit for the performance, so must deem the evening a success.  Had the kids been there they might have been surprised to see that I was not the last one out last night – the other poor lady had a broken foot, enclosed in a soft boot.

Knowing that I was to visit the CNS this morning at St Thomas’, I thought it would be wise to have a go at charging myself when we got home last night.  It is strange to think that I am actually charging myself in the same way that I do my phone!! We had already plugged the charger into the mains to power it up, as it is not recommended that you attach the device to your implant whilst the charger is still plugged in.  There is a paddle which is placed over the implant and the screen on the charger has a display, not dissimilar to the programmer, which has a rating to show just how good the connection between devices is.  As with most electrical devices, it charges quicker if the stimulator is switched off – I had run it down to nearly 50% and it took about 90 minutes to charge to full capacity.  I will post some pictures of the various parts over the weekend.


I really was beginning to feel frowsy.  The kids rolled about in laughter and swore they had never heard the word before – so I suggested they look it up, before checking the dictionary myself.  “Seedy looking doormen in frowsy uniforms – scruffy and neglected in appearance”.  Mum helped wash my hair over the basin before the second stage of the surgery, but I haven’t been able to shower since before the trial.  I remember when we were told on the pain course that we wouldn’t be able to shower or bath for a couple of weeks, the response from one of the group, a very funny guy with such a dry sense of humour, was along the lines of  “no shower, For 2 weeks?  i thought this was going to help my love life!”shower

So my stitches came out and I jumped, ok crawled, into the shower. Bliss!!  And believe me, I actually do not enjoy showering normally.  There is something about the combined heat and pressure of the water, followed by the cold air on stepping out that triggers my pain to such an extent that I physically heave.  Despite a heater, the change in temperature induces such overwhelming pain that my pallor turns grey and clammy, I shake and often vomit, and am unable to determine any more what is actually hurting.  Needless to say, I am really hoping that the stimulator will be able to help with this – although it is hard getting round the feeling that I am placing a current into water.  Yes, yes, I know it is inside me, but physics was never my strong point!  But I feel clean – no more frowsy.

When the appointment was booked with the practice nurse for a 10 minute slot, my husband queried it as i have 2 wounds but the receptionist was adamant.  Over half an hour after entering the room, I came out…….I was the first scs recipient who the nurse had met, and fortunately could tell her exactly what was what, as the discharge summary was not worth the paper it was printed upon.  The sutures on the spine were removed with ease, but those at the implant site well……let’s describe them as a challenge.  They were densely packed in and quite puckered, resulting in great difficulty cutting and removing them.  I believe several broke and thus there may be some rogue ends lurking for future forceps to explore.  But the wounds are healthy and healing well, incredibly itchy and still very sore at times!

The last couple of days have proved challenging due to the weather.  I believe that most of us, with or without ills, have an inbuilt barometer and have eccentricities for predicting the weather.  How many of us can remember granny saying there would be rain ” ‘cos my bunions are playing up” or something similar?  Not quite so amusing as we grow older and our own ailments are doing just that.  For me the damp and/or cold weather affect both the nerve pain and my dodgy EDS joints, so last night wasn’t great despite being mild.  My shoulder is painful but I find myself unable to do my regular exercises as I must not raise my arms above my head – the whole premise of the exercise programme being built on moving my arms within the shoulder sockets and not to dislocate. No mean feat for me!  Must remember to book in to see my fab regular physio, who really has his work cut out for him.

I think that I must be honest for other painbuds and those considering scs, and say that controlling the pain has been a challenge the last few days, and the stimulation is  masking the pain not curing it.  I mentioned in a previous post the battle going on in my leg and back between the pain and the parasthesia, and this continues.  For some lucky people it really does eliminate the pain, but I still believe I have a good result which may be improved upon when the CNS looks at my current programme on Friday. I haven’t felt quite so well in myself either and I think that things are probably catching up with me.  A pal reminded me on another site that when we have surgery, it is important that we respect the normal recovery times and also remind ourselves that we are learning to live with a new, permanent therapy,  Thanks Navchic!  It isn’t visible – there are no drips or pills, just a body and mind adjusting and adapting.    So, normal service will not be resumed for a while yet as I reel in my own expectations and thus those about me – kids, take note!!