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!  

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, aghhhhh.

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!”

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!!

The title is probably slightly misleading, as when I typed it I meant one thing, but now realise it could have a completely different meaning.  Isn’t this just so with so very many aspects of life?

My original meaning was a comment on our wedding anniversary on Saturday and the realisation that we have actually been married half of our lives.  How old did this make us both feel?!  Duncan presented with a small gift box and then said “don’t get too excited”!  Inside was my very own set of dog tags – Medic alert pendant detailing my implant type and ID number. Not my name just yet, but the time may well be soon approaching when I need to be reminded of that.  To mark the occasion we decided to celebrate with a SAINSBURY’s deli curry for kids and grandparents – very exciting but best of a tricky time for many reasons – and so I found myself having anniversary breakfast in said store on Saturday morning before heading into the shop.  It was a great test for my new toy, as the store was freezing due to air conditioning billowing out and this cold normally gives me such intense leg and foot pain, I would struggle to stay upright.  I did need to turn the level of stimulation up (5.3), and at one point I could actually feel the cold and the electrical impulses doing battle in my leg! The strangest of sensations and I wasn’t pain free, but the difference was that with the stimulation I felt in control and I coped.  1 – 0, stimulator and the curry was great.

Today we dropped our student back for the beginning of his second year at uni -whilst he has been back & forth since picking up the keys for his flat share, he hadn’t moved all his clobber back. The car journey was another tricky situation! To be continued…….

All you parents out there must remember those months of anticipation and preparation for the new arrival.  Reading all those books and magazines in an attempt to have all the inside knowledge possible and so be ready, not to be caught on the hop by any surprises.  You’re told that there will be help from professionals every step of the way…..yet nothing quite prepares you.

So it can be undergoing a life changing medical procedure.  The time spent preparing and anticipating can be months – months just on a waiting list before you’re even seen and assessed.  When I was first seen after referral, it was made very clear that this was not just an in and out procedure, but rather a whole process.  The outcome of the surgical procedure was more likely to be successful if combined with other elements – both physical and psychological preparation.  But all those months of preparation and reading, talking and scouring online sites & forums can never truly prepare you for the final outcome.  A very different outcome to a newborn, but nonetheless a huge shift physically and mentally.

No one can anticipate what a spinal cord stimulator will feel like for one person, whether it is a low frequency emitting a parasthesia or tingling sensation, or a high frequency which gives no indication that it is working – other than the pain ceases when it is switched on.  There can almost be a feeling of anticlimax after so much eager anticipation, but also loneliness and isolation.  When I was on the inpatient programme, one of the others described us a being in the “Input bubble” – a safe place, away from the real world and our normal lives. I remember giving discharge talks to patients and going through a check list, but once you get home that little chat can feel woefully inadequate.  My discharge letter contains very little information, and over the last couple of days I suddenly felt quite uncertain – when should my dressings be changed, who should remove my stitches, what did they say about recharging? aghhh…….I don’t know!  Did the consultant tell me in recovery to go to my GP in 10 days, or did I dream that?  Will I receive an outpatient appointment at a days notice, like last week?

Even though the ex nurse knows these answers, I suddenly haven’t been sure and have felt quite isolated.  I did call the hospital and leave a message for the CNS, but whilst waiting I felt a need to do something myself.  I contacted friends – pain buddies who have been here.  One had an implant several weeks ago, the others I contacted via a specialist forum – and there is just fantastic support out there.  Of course I knew that the dressings needed to be changed!  I just needed it to be confirmed.  Nurse Duncan to the rescue as I talked him through aseptic(sterile) technique and checking the sites.  I have 2 incisions approx 2 inches in length – one on my right bum cheek, the other on my backbone;  I swear that if another surgeon goes near my scar, it will extend from my coccyx to my bra strap!  The small wound to my left hip which had carried the cable to the trial battery has healed to the size of a small cigarette burn!  Stitches come out Monday at my GP surgery, and my outpatient appointment arrived for next Friday.

4.45pm the phone rang.  You guessed it!  It was finally the CNS returning my call……but I had already answered my questions.  For now at least.

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