I am a part-time sensory panellist, which involves me evaluating the smell and taste of various consumer products, and a part-time artist.

Although originally from Lancashire, I moved to Leicestershire in 2003 and live there with my husband and Jack Russell. I was diagnosed with cauda equina syndrome (CES) in June 2011 when I was 35 years old.

I had suffered with mild to moderate back pain on and off since I was a teenager. I put it down to my height - I’m six foot tall, and didn’t think it was much more than an irritating but inevitable fact of being tall.

That was until 2010, when the pain became much more severe. I was given various pain medications by my GP, and had both physiotherapy and private chiropractic sessions, which all had little or no effect on my pain.

I was referred for an MRI scan following additional symptoms of pins and needles in my feet and also sciatica (pain that radiates from the back and travels down the leg). The MRI showed two large, prolapsed discs in my lower spine L4/5 and L5/S1. I was put on a waiting list for a caudal epidural injection.

The Red Flag symptoms (symptoms that are used to help clinicians identify serious spinal pathology for CES), appeared about a week after I was placed on the waiting list for the injection.

One morning, at home, after a night of crawling on my hands and knees, unable to lie in bed because of the pain, an excruciating shock of pain in my lower back caused my legs to buckle under me and I collapsed onto the floor.

I quickly started to go numb, first my saddle area (which is the area that would be in contact with a saddle when sitting on a horse, so the groin, the bottom and genitals, and the upper inner thighs) and then my legs.

It was terrifying and the pain was like nothing I had felt before - it felt like my spinal cord was breaking in two.

In A&E, following several rectal examinations, another MRI, and the realisation that my bladder was in complete retention (where you can’t empty all the urine from your bladder), I was told I would need surgery on my prolapsed discs.

I had the discectomy decompression surgery (an operation to remove the affected part of the disc in the spine) the following morning, around 24 hours after my collapse.

In the run-up to my collapse, I had been finding it exceedingly difficult to concentrate on anything, the pain was all-consuming at times and the medication gave me brain fog. Following the onset of the red flag symptoms, I was scared and confused as to what was happening. I had no idea.

Although not without its issues, I remain thankful that the ambulance and A&E staff recognised what was happening and for the treatment I received.

The main issue was lack of communication regarding CES itself; although I had been told what red flags to look out for during my MRI follow up, I had no idea why, or of the seriousness of the situation, or that I could become permanently disabled due to delayed or lack of treatment.

I woke from surgery still very numb around the saddle area and down my right leg, and my bladder was still in retention, however, my pain was gone, and at the time that was all I cared about. I was sent home with a catheter five days after surgery.

On my notes, I read the words ‘cauda equina syndrome’ for the first time. I had never heard the term before and had to Google it.

Six weeks after surgery and with my bladder still in retention and my mobility still significantly reduced, I was sent to a specialist spinal unit, where, for the first time, I had CES explained to me and learnt how to self-catheterise after being told that my bladder retention was likely to be permanent.

Three months after my emergency surgery, one of my discs prolapsed again and I had to have further surgery. After my second surgery, my bladder slowly started to work again, and I am fortunate to no longer have any serious issues with it. I still have altered sensation and numbness in my saddle area and a weak right leg and ankle.

I consider myself to be incredibly lucky, particularly, as I have met many people with CES who have had significantly worse outcomes than I have.

I worked for a CES charity for three years until 2015, helping to raise awareness and support people with CES.

Through the charity, I first met Consultant Physiotherapist and co-researcher Dr Sue Greenhalgh and I have worked with Sue on a research project in the past as well as presenting with Sue at an international conference in Glasgow in 2016. So, I jumped at the chance to be involved in another important CES research project.

I lead the Critical Friend Group with support from Lead Researcher, Dr Gillian Yeowell, and the rest of the team from Manchester Metropolitan University.

I am also a member of the project Steering Committee and I’ve helped to develop our webpage and provide content along with working with the academic team to help shape and refine the study.

I think that, even though the research is focused on the experiences of physiotherapists in relation to CES litigation, any outcomes that improve how physiotherapists are trained and supported can only lead to an improvement in patient care and I am proud to be part of it.