Lou - Founder and Facilitator
My name is Louise, Lou, I have chronic pain. This was following an accident at work that changed my life overnight in 2012. I have, however, since been diagnosed with fibromyalgia and arthritis.
Before my accident, I was an independent woman who worked full time in a physical job, partied hard at the weekend and thought nothing of jumping on a train to go and visit friends all over the country. I had passed my driving test the day before and was looking forward to starting a new life with my partner. Sadly, everything changed in the blink of an eye. From the moment I had the accident it affected my mobility, I had foot drop on my right side and pain in my back. I was on morphine, tramadol and lots of other medications and life had become a blur, I did nothing but sleep, struggle with pain and feel exhausted. 4 months later it was discovered via an MRI that I had slipped the L4/5 disk in my back. The occupational health person through work contacted several surgeons around Northants to find one that would operate. I was met with the same answer from all, that they would not operate due to the risk of paralysis. The disk was far enough out to cause pain and a lack of strength down my right side but not far enough out to take the risk of spinal surgery. I slowly and without being conscious that it was happening fell into a deep, dark lonely hole.
I lost 2 years of my life, I had been told I would never work again, my friends and any quality of life had disappeared. I was doing nothing but sleeping, I was so consumed by the pain I didn't look at the bigger picture. I was missing out on time with my loving partner and my dog, I had robbed myself of all the small pleasures in life such as the wonders of nature, photography and life in general.
I felt I had lost control of everything in my life and it had been taken over by chronic pain and fatigue. I felt alone, isolated and suicidal. What was the point in carrying on? I was no use to anyone, people had to help me with simple things like washing, shopping and meals. I had been a fully functioning adult, a provider for myself, independent and strong. Don't get me wrong, I was surrounded by a loving family who tried their best to understand, but how could that be possible when I didn't even understand what had happened myself? I was lost, angry and frustrated. I felt like I was on a sliding scale of grief, for my old life and the things I used to be able to do and also for me as a person, I was a stranger in my own body.
I was referred to a course run by our local NHS by my GP, It was at no point explained to me why I had been sent there and I was never given any information as to what to expect. I had a mini-consultation to see if they felt I was in the correct 'place' to join the course, yet again I was just going along with whatever I was told. I had no fight or even the energy to ask questions about the course. I arrived on the first day of the course, nervous, in Lala land due to medication and totally unaware of why I was actually attending this course (at the time I did not think to ask the question either). I felt negative straight away about the course, all that was in my mind was how much this course that was supposed to help me was not taking into consideration my difficulties, already they did not understand. They expected me to get up first thing after a rubbish nights sleep, drive to the location, walk miles to the hospital room and sit for 4 hours before driving home again. I felt it was not achievable, unrealistic and pointless. The day only got worse when I found out why I had been sent on the course, The opening sentence was' hello, welcome to the chronic pain back course, you are here as by now you know you have back pain that will never get better, it's for life, there is no cure.
It was like a slap in the face, what did they mean for life? never get better? but how could I live like this, unable to do anything, no quality of life, no independence? my life was in tatters along with my mental health.
The course was over 9 weeks and by the end of it I felt different, I had spent time with people just like me, in pain but they were carrying on with life. Most were working and coping. This showed me a different perspective on the situation, I could have a life, I could do things, I could work, maybe not in the same role as before but another role.
I managed to return to work, it is part-time in an office, a call centre, definitely not my job of choice but the difference it has made to my emotional well-being has been a transformation on its own.
In September 2015, after 4 years of waiting I was told they would operate, I had had a fall and the disk had slipped out further causing sciatica down my right side and weakness. This was it, finally, I was going to get my life back, I was ecstatic. I made plans to take my partner away to thank them for staying with me, I was going to walk my dog for miles, I missed getting lost in the woods for hours with him. A life of no pain, no medication and no restrictions. In January 2016 I hit rock bottom, the operation had not worked and it had made my back weaker than it was before. It was immediately going into spasm when I stood up and the pain was worse. All I could think about was how was I going to get out of bed and face this pain every single day, What was the point to life, I had no purpose and could see no point carrying on. My partner and parents thought I should have counselling, I felt it was pointless because the same fact remained, I didn't know how to live in this pain every day. I was too exhausted to argue with them and went with the flow.
I had 6 sessions with a counsellor who has chronic pain, I poured my heart out, I don't know what happened in that room but I somehow found myself. In the end session, the counsellor said to me, you came here stating you did not know how to carry on, but, we are 6 weeks down the line and all I have to say is, keep doing what you are doing, you are doing it! - Another slap in the face, I am doing it.
In October 2016 I decided that I wanted to help others like me who felt they had lost everything, I launch NCPS to provide support meetings for people with chronic pain. I found people were opening up to me and talking to me in a confidential way about how they really felt and their experience with chronic pain. I felt honoured that people trusted me enough to do this.