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.