I have a chronic pain condition called Trigeminal Neuralgia and I’m often asked how I stay so positive.
Generally, I can be quite a negative, grumpy person. I complain a lot, I’m hard to please, but in terms of my chronic illness, I’m actually kind of a ‘glass half full’ person. This is down to my now husband.
When I was first in pain (July 2015) and first diagnosed (September 2015), I was miserable. I couldn’t move out of bed and I was suffering from a horrible depression. I used to go to work, come home from work and crawl straight into bed. This got slightly better when I got my kittens. Instead of getting straight into bed after work, I’d look after them and then snuggle up on the sofa with them. I wouldn’t leave the flat, I wouldn’t see friends, I wouldn’t do anything.
My pain was all consuming physically, but I struggled a lot with the emotional and mental aspect of being in pain all the time. I’d gone from being fairly healthy to suddenly being told I was sick, with no cure, for the rest of my life. That’s a horrible reality to be faced with and I don’t blame anyone for negativity in that situation. When I had to see a therapist in early 2016 for depression, I wasn’t ashamed. I think it would be strange not to be depressed after such a life altering diagnosis.
I remember being in a really bad place. I had no energy to move. I didn’t want to kill myself – I have never had any specifically suicidal thoughts – but I’m sure had I had any more energy then I might have been thinking about it. When I look back, I can remember exactly how I felt. I can remember exactly what I was thinking.
And then along came my wake up call.
I must have been hard work for my boyfriend (now husband) at the time. He made me soft foods, ran to the chemist and the doctors for me, took me to all my appointments, tidied the house, did the washing and literally took care of everything around the house and me for months on end.
I remember him standing over me in bed, where I was curled up, probably hadn’t moved in a couple of days over the weekend, giving me a massive telling off. In fact, I think telling off is putting it a bit lightly. That is the single reason I am like I am today. That’s the reason I survive like I do. That’s the reason I get on with it so well.
I would have been happy to lie in bed forever.
He had asked me if I wanted to get up and I’d said no. He’d told me to get up and I’d said no.. and then he must have reached the end of his tether. He told me a few home truths that I needed to hear and, although it was hurtful at the time, what he said saved my life. Although harsh, these truths were the best thing he’s ever done for me and I didn’t realise how much I needed them at the time.
This is your life now. You just have to get on with it.
You won’t have energy again/be completely well again/feel up to it again. Maybe ever. This is it now. This might be the best you feel forever.
We still have a life to live. Whether you’re in pain or not, you still have to go to work and look after the house, go out with family and friends, pay the bills and look after your pets.
Feeling sorry for yourself isn’t going to fix this. You are allowed to be sad, but not all day every day.
Sometimes you need putting in your place. It was all said with only love and kindess and my best interests at heart. I was shocked and upset, but I got out of bed. He actually took me to one of my favourite places on earth that day too and we had an amazing time. It was my turning point and the start of my journey into acceptance and happiness.
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