Who Am I?
Sorry. This is really dry. I promise I will try to make my posts a bit less difficult to digest.
I am a woman in my thirties, married to R with two wonderful lively children: my Summer Girl aged 9, and my Winter Boy aged 5. We live in Devon, a beautiful part of the country, which I remind myself of every time I feel low. I am a water baby at heart, but that’s a sore subject right now. I love sharing wine with R and friends, having intimate dinner parties but actually that happens rarely these days as I am ready for bed at the same time as the children! I am also a solitary creature and enjoy time in my own, not afraid of my own company and have a tendency to hibernate at times; over the last couple of years perhaps a little too much. I love music and pretending I can sing; in the car mostly. I would love to dance around the front room again.
I am clinging on to a career that I love by the skin of my teeth. The impact of chronic pain and disability has been devastating on my career, on R’s career, on my ability to actively parent as I would like, and on my relationship. But we are a strong family team and will survive this round of shit life has thrown at us. Although I wouldn’t go as far as to say it’s made me stronger.
Why Do I have Back Pain?
When my Winter Boy was 10 months old (September 2010), I had an injury to my spine. You can a read a little bit about it here. The result was likely a fractured L5/S1 vertebrae that healed on it’s own, which caused a ‘retrolisthesis‘ and was not diagnosed until 2013 as the first sign of injury was missed. It very likely was the cause of the cascade of degeneration in my lumbar spine over subsequent years.
10 days or so after my initial injury I was crawling along the floor crying in sudden horrific back pain while Summer girl telephoned R to come and get me into bed. I used a potty to wee in, because I couldn’t walk to the toilet, I screamed with tiny movements, took huge amounts of codeine even though I was breastfeeding, and it was put down to a torn muscle, and I got better after a few weeks.
After 4 more episodes of repeated muscle spasms and sciatic pain, always resolved with a few of days in bed, a week or so off work and strong killers/anti-inflammatories for a few more, it all changed.
While away from home, Christmas 2011, my back ‘went’ badly. I was medicated significantly by wine and supported by a kitchen worktop at elbow height for most of the week away, literally unable to stand. It was still diagnosed as muscular, or possibly a ligament, but insisted something be done.
By April 2012, there was no ‘recovery’ period and a diagnosis of mild broad based disc bulge in L5/S1 vertebral segment. By December 2012, I had a fully prolapsed disc, trapping the L5/S1 (sciatic) nerve and could barely walk. This improved slightly and got worse several times until May 2013 at which point I finally got to see a neurosurgeon, followed by microdiscectomy 3 weeks later which was the miracle fix. Or so I thought.
After a brief interlude of low pain and getting my life back, I took huge step back pain and mobility wise and returned to see my consultant in Devon who did two new MRI scans, and told me there were ‘changes’ that might or might not be helped with surgery; I suspect the ultimate decision not to operate was financial. So I sought a second opinion in London. With the advice of some lovely supportive people who also have back pain, I went to the National Hospital of Neurology and Neurosurgery in London.
I was diagnosed at that point with what is, in effect osteoarthritis in my facet joints at two levels (L4/L5 and L5/S1), along with a disc bulge at L4/L5 and spinal stenosis at both levels, on both sides, and end-plate damage/odema. I had a two-level laminectomy and decompression in January 2015 and am still recovering 8 months on. ‘Recovering’ being the term used for not really getting any better any time soon!
What treatment have I had done?
I am going to write a separate page about the treatment that I have had, what has worked and what hasn’t. But it ranges from hot water bottles to anti convulsant medication, to steroid injections and ultimately surgery. I will link to the page when it’s done.
What are my future plans?
I am waiting for a consultant review in London along with another MRI. At my last review it was suggested that, as keeps being suggested, spinal fusion may be the only option left surgically to address micro-instability caused by Degenerative Disc Disease and Facet Joint problems. I am not ready for that.
I remain hopeful that this will get better. You know, like a miracle or something. In the absence of that, my goals are less than there were a year ago, mostly to keep smiling, keep working, go to Frank Turner concerts!
If you get further than this page, Thank you 🙂