The problem with us nurses, so I’m told, is that we make awful patients. We are excellent at giving out care advice – do rest, do drink plenty of water, do keep moving your legs, don’t sit in pain and try to be brave etc etc – but not always so good at taking it. I think it is the need to continue to be in control, the difficulty in accepting someone else doing your job for you, the loss of independence. But sometimes it just boils down to a teenage son having a completely different set of priorities to you!!
My instructions have been fairly straightforward – rest, gently start to mobilise and try to live as normally as possible during the trial without overstretching, bending, lifting. Anything that might dislodge the leads from their position against my spinal cord is a no, no. So vacuuming on day 3 is out! I am really struggling with the fact that I seem to be the only one in the house who can see dog hairs. Those of you who know us will also know, and have heard, our special needs pooch Samson – perhaps best described as a shaggy black mess. 
Of course it is generally assumed that those house goblins normally vacuum up after our hairy boy, along with putting on laundry, ironing and a great list of tasks. So imagine my son’s surprise when he found himself at the end of a hoover today when his mother became hysterical and threatened to undo all the surgeon’s good work because she could no longer stand the mess!!
I continue to feel benefit from the stimulator for my leg pain, but equally when it is switched on I do think that at the moment it may be increasing the itching around the wound site. Tricky!
I have been in touch today with a wonderful lady, Jan Sadler, who set up and runs a great website http://www.painsupport.co.uk. She sends out monthly newsletters, moderates a variety of pain related forums and gives us members the opportunity to make contact and become pain buddies. Her wisdom and personal experience has seen me through some very difficult times over the last couple of years and the website is full of comments bearing testimony to the fantastic work that she does. I remember very clearly about a year ago a fellow member, Tina, undergoing a spinal cord stimulator trial and writing a piece which Jan published. I cried when I read it because this lady could have been describing me – her thoughts, her feelings, even the fact that she had been a nurse in a former life. My last surgery, a revision of spinal fusion, had failed to ease the pain and I knew that the only course of action left open to me was a referral to St Thomas’ for neuromodulation. Tina’s words offered me hope and an expectation, but also gave me something to give to my family and to be able to say “that is me and this is how I am feeling”. So I am delighted that Jan has added a link to my blog on the forum, in the hope that someone else who is looking for information, reassurance or just some kinship might find this helpful.
PainPalsBlog 
Thank you for your kind comments, Claire.
Tina gave me permission to upload a PDF of her SCS diary. Here’s the link to it:
Click to access StimulatorTrial_TWorth.pdf
For anyone considering an SCS implant it is well worth reading. Bear in mind that people’s experiences will vary according to the procedure and the type of SCS.
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Thank you Claire, you’ve done the same for me as Tina did for you? I’m undertaking my stim trial later this year…
The information the hospital gave is practical, but it doesn’t (and can’t) explain the feelings you have, the thoughts and worries, the ‘I wonder if’ s.
Thank you.
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Hi Sian,
I am so pleased you found me! No one can really understand what nerve pain is like until they experience it and chronic pain is on a different level. You have obviously read my story and seen that I was young when this all started, so over 20 years later in my mid forties I feel like an old timer when strangers and new friends say “but you’re so young”. One of the best things I did was go on the scs residential course as for the first time I was in a room with others who understood exactly how I felt. We all had a major wobble at some time during the fortnight and tears were shed, but it didn’t matter – even my lovely family can’t understand like this new family. Do C & W have a similar course? I was working at Charing Cross when C&W was built – still remember our first transfer to the ITU and couldn’t believe that the architects hadn’t hadn’t designed the doors wide enough for an ITU bed to pass through….I digress. Welcome to your new family – there are a few of us on here, now – and please email me with any questions or just for a chat! C x
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Aw thank you! I really appreciate you replying, I don’t feel quite so alone!
No, the C&W don’t do the residential course, but I did attend a PMU course locally here in Reading, run by a physio and psychologist, which was really helpful.
Just to be with other people suffering chronic pain (albeit for different reasons affecting different areas) and who understood how you felt was so liberating. They understood how you sometimes think it must be all in your head, how you feel a burden etc. The course was good too!
I was the same, being such a youngster when this all started!
My chronic pain began after a bone infection in my artificial hip, which had been replaced in my mid thirties. Things went downhill, and for the past 17 years I’ve been in and out of hospitals, eventually, after having a right hip replacement and my left hip totally removed, I have mobility issues meaning I had to give up a career I adored.
Sorry to pay back your fabulously supportive message with doom and gloom…. It’s a bit like how mothers always talk about childbirth!
Anyway, my scs trial begins on Dec 1st at 8 am, so I’ll be re reading your story many times I’m sure!
Keep limping along! Siân x
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