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!!

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……..

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!

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!The 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.

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.  

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
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…..