Those words stuck with me - but for a different reason than you would think.
Most people would say she’s a brave woman, she’s going to fight against that awful pain, and she’s not going to let it get her down.
But I think that was the day my attitude to life changed.
I had been doing that all my life - trying not to let pain beat me. Constantly fighting against my back pain. Fighting against it day in and day out.
When I was a teenager, I wouldn’t even admit that my back was hurting so much. I just wanted to be “normal”, whatever that is. Of course, I wasn’t normal - I had such an odd shaped back. As the scoliosis developed, it pushed my pelvis out of shape. But I tried to ignore it and the pain. I used to go shopping with my sister and I think I fainted in too many shopping centres for her liking. We were always standing in a queue about to buy something. My back got more and more painful from standing, but no, I wasn’t going to let it beat me. I stood there, then everything would go dark and down I went.
I lost count of how many times I fainted. That was my back’s way of telling me, ‘okay, if you’re not going to stop, I’ll make you!’ Of course, everybody looked at me, then asked when I’d last eaten. They all thought I must have been starving myself. But I wasn’t. The only thing I was guilty of was trying to walk around with a very sore back.
I eventually had to go off sick from work when I was twenty-five. It had been a nightmare. I wasn’t coping. But I just didn’t want to go off sick. No choice though. My back locked up on me and my Mum and Dad had to get the Doctor. I stayed off for about eight months and was determined to get back to work. I was due to get married, and I just didn’t want to start married life being “sick”, so I pushed myself. Actually, I pushed myself for the next two years or so. I was getting up in the morning, going to work, coming home and going to bed. I was fit for nothing. The pain was constant and I was struggling so much. Eventually, when I was 28, the realization came that I would have to give up work.
But I was still fighting. Still not wanting to let the pain beat me.
Then that woman said those words “I’ll never let it beat me”. Everything seemed to fall into place for me. I was in constant severe pain. I thought about it. Those were words I had used myself. Those words meant that I was in a fight. Who with? I was in a fight with my pain. The pain was mine, so I was fighting with myself. But my pain was stronger than me. I would never be able to beat it in a fight.
I think that was the point when I realised that I would have to learn to live alongside my pain rather than be in a constant battle against it. Fighting is negative and by nature, I am a positive person. I learned to listen to my body so much more. I learned that living with chronic pain would have to be part of my life. I learned that if I needed to sit down, I would have to do that. I learned that if my back said just to stay in bed all day, it meant business. I am not trying to say that we have the perfect relationship....I do occasionally try to ignore it, and it complains, but on the whole, I listen and do what I am told, and we get along better than before.
So I suppose I have accepted my life with chronic pain. But acceptance doesn't mean I have to like it!
Trigeminal Neuralgia is so much harder to deal with though. I had already given up work, so that wasn’t an issue. And that is a big issue to most people. My face and head don’t like the cold, so I can try to avoid it. They don’t like talking sometimes, so I can try to avoid that. They don’t like eating or drinking, brushing teeth and hair or being washed, but it’s hard to avoid all of those things. But most of the time, it just hurts for no reason, and that’s when it is harder to deal with.
I can accept that I have to live with it. But I definitely do not like it.