When I was nine years old, in the late ’60s, it was discovered that I had juvenile scoliosis – a curvature of the spine. They identified that I had not one but two ‘primary’ curves, meaning that both were progressively getting worse. At that time, the treatment consisted of traction (literally being stretched on a frame) followed by a plaster cast from the neck down to cover the whole torso, and then a milwaulki back brace, which was made of metal and leather and had to be specially made, hence the plaster cast. To get the size right, a cast of my body was made by wrapping a hot sheet of a plastic like substance around me while I was on the ‘rack’. This hurt. The plaster cast was uncomfortable and gave me boils on my chin where it rubbed and it hurt my hips where it rubbed there. Also, the smell of wet plaster of paris made me throw up. Once fitted, I was allowed to take the back brace off for an hour a day but had to wear it at al other times, even to sleep.
As I grew, a new back brace had to be made to fit so the process was repeated another two times until I was around 14, when they decided it wasn’t helping and that I could be brace free until I was sixteen when I would be old enough to have surgery. Due to the nature of the surgery at that time, it couldn’t be done before growth had reached a certain stage.
Surgery took place in the late summer of 1976 when I had just completed my GCEs and was due to start college to study art and art history A levels. I was in hospital for four months in total, at the Royal National Orthopaedic hospital in Stanmore and I had an extra two weeks due to a problem with the initial surgery that meant I had to go down again. During this time I had a ‘pelvic halo’ brace which was screwed into my skull and hips (literally) and held me rigidly in place. They would lengthen the rods each day by loosening and tightening the screws and it really did hurt. When they were satisfied I could not be stretched any more, after about three months as an inpatient, the surgery took place. I can remember being wheeled on a trolley to have X-rays and the bumping of the trolley over the ramps to the building hurting me so much.
The surgery consisted of removing bone from my hip and packing it between my vertebrae and then inserting a metal rod all the way along my spine to hold it all in place – for those who are curious, this was known as a Harrington rod. Following surgery, I had to wear the brace again for another 2 years while the bones fused together, until I was 18. I was allowed to take it off only to wash. Again, I had the boils and the discomfort where the brace rubbed against my ribs and my hips.
So why I am I telling you all this?
Because I believe that this is how I learned to cope with pain. I came from a family where we weren’t brought up to make a fuss about our aches and pains so it was natural for me to ‘deal with it’. As well as this, I was a teenager and I wanted my life to be as normal as possible – I didn’t want to be treated differently so I acted as if everything was fine, even when it wasn’t. Over time, the pain normalised and I just got used to it. I went to college, I went out socialising, I had a boyfriend, I just got on with it all. The brace came off, life carried on. I had some problems in my late twenties where the very lowest part of my spine that hadn’t been fused started to disintegrate and went through five years of being registered disabled before I had another fusion in my early thirties.
Latterly, I have been diagnosed with fibromyalgia, about two years ago. I couldn’t have been more surprised – I assumed everyone had the twinges and aches I had most of the time! It turns out they don’t…..what I think of as twinges and aches are actually incredibly painful to many sufferers, it seems.
Fibromyalgia is thought to be caused by the brain’s inability to correctly interpret pain. Sufferers may feel pain for no reason or they may experience pain that is worse than a non-sufferer would experience in the same situation. There are other symptoms, including fatigue and IBS but the pain seems to be the main feature of this condition.
I use my attitude towards pain, gained in my youth, to overcome the symptoms I experience. Exercise can be hard when the joints are screaming or the back of my head feels like someone is pressing a hot iron on it, but I know that once I have done it, I will not feel any worse – I will feel better, more mobile, less pain, more energy.
For this reason I am exercising daily, pushing myself as hard as I can and then some, to keep control of my body, of my mind.
Anyone can do this. I do not accept that fibro is debilitating. I know it isn’t. My mind is strong enough to overcome this physical nonsense. My mind IS overcoming it on a daily basis. I take no medication for my fibromyalgia – I don’t believe I need it.
Pain is subjective. It is up to us how we manage it……