Category: chronic pain

Who else is out there?

On By Claire Saul (PainPalsBlog)In chronic pain, opiates, Spinal cord stimulator, Uncategorized1 Comment

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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…

Day 1 R&R

On By Claire Saul (PainPalsBlog)In chronic pain, Spinal cord stimulator1 Comment

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

So, here goes……

On By Claire Saul (PainPalsBlog)In Blogging, Blogs, chronic pain, Spinal cord stimulator16 Comments

“Why do you want to write a blog?” was my teenage son’s reply when I asked him to set this up.  That’s as good a place to start as any.

On Friday, tomorrow, I am due at Guy’s hospital brightand early for a neuromodulation trial – the implantation of a spinal cord stimulator (a  sophisticated internal TENS!) to help combat the chronic pain that I am suffering. I have read and watched various accounts online of other people’s experiences, but I want to try to put into words how this experience feels for me.  I would like to share my journey (at risk of sounding like I’m on X Factor) with my friends and other fellow chronic pain bods – you know who you are – all to be known as my Pain Pals!

I will try to update you on my progress regularly, as well as adding elements of my history and the often strange and laugh out loud moments of a body disabled by pain.

So back to my son’s question……I think that I am writing as much for me as for the rest of you.  To help to inform my friends and family, to get my own thoughts and feelings out and, if I can, to help anyone else out there who is living with chronic pain.

Nil by mouth shortly, early start tomorrow morning.

Thanks for joining me,

your pain pal,  Claire