I get ratty. I do find I get ratty and my husband says I get very ratty. If I’m in a lot of pain, I can get very sharp and very short and I don’t recognise that my pain has got worse. That’s one thing, and I accept when my husband says ‘You’re in pain, you’re ratty’ because I’m not a ratty person ‘You’re ratty, you’re sharp, you’re very off, you must be in a lot of pain’ and instead I will accept that.

I will apologise rather than saying ‘No I’m not, I’m fine. Theres no point in that. I accept that and I’ll say and I trust my husband and ‘I’m sorry’ obviously and I’ll go and rest and I’ve warned some people at college that if I start getting ratty it means I’m in pain, because, I don’t know. Which is very strange, isn’t it?

I wasn’t surprised at all that my discs were damaged and I know that you get better from that. You know, people, there are hundreds of people, thousands of people with the same problem as me, who don’t have the pain. I don’t know why.

Some, you know most people, it’s, you know, you get better. I’m better but the pain just hasn’t stopped.

Well, you then just get on the treadmill of, you try to think of how you can get better and try to find out what’s wrong with you. I didn’t want invasive surgery. I’d been to see… the reason I’ve seen three orthopaedic surgeons is because every time you go back you see a different one.

Theres no continuity and that continuity is quite a strain on you because you then realise that, basically, you’re just a number, not a person, and whoever happens to be around at the time, reads your notes if you’re lucky, and takes a look at you, asks you a few questions, dismisses you to see the next person. Because he hasn’t got time to see you. So nobody does anything holistically. You are just part of a process and the onus is on you, as a chronically disabled sick person, the onus is on you to find as much as you possibly can to look after you.

Otherwise you can end up going off on tangents, down side alleys, up blind alleys, you could end up having operations that you didn’t particularly want. I had to fight one orthopaedic surgeon, well it wasn’t much of a fight, I just said no. He said hed just shave a few little cells off of the vertebrae to relieve the pain. Well, having worked with children with disabilities, who have had all sorts of horrendous operations, I know what bone pain’s like and theres no way.

When that was suggested, I asked to see a neurosurgeon because, if anybody’s gonna go anywhere near my spinal cord, I want a neurosurgeon to double check him, and the neurosurgeon said that my discs bulge into a cluster of nerve nodes and it’s very, it’s best to avoid going anywhere near any of it just in case, obviously just in case of paralysis.

So I read some information and it said that if you have a fusion, another operation that you’re offered is a fusion, and the statistics show that, I think it’s four or five years down the line, people that have had fusions can be exactly back where they were four or five years ago, there may be no benefit, and the girl that took over my job in the hospital when I left, had already had a fusion and she ended up losing her job because she damaged the next disc up and ended up, you know, having another fusion. So I, personally, I wouldn’t want that.

You said earlier that you don’t take medication now, but in the past you’ve had experience of medication?

Yes, I took paracetamols, ibuprofen, anti-inflamatories, and then I was prescribed co-proxamol, which are pretty good, they’re a bit sledge hammery, they tend to knock you out a bit and also all these things make you constipated.

So, you know, you get, you take one thing to relieve one thing and you end up with something else and after nearly ten years I came to realise, last year, I did a little test with myself, to see if I could manage without them, because I thought ‘Well this is ridiculous, I don’t think they’re doing very much and I stopped taking them and I will only take them occasionally, if I really can’t sleep, if I’m having a very bad night.

In fact it’s my husband that suggests I take them so that he can get some sleep. But I try not to take them. I can’t see a lot of point. I can’t see that I gain much at all, apart from feeling very fuzzy in the head and I don’t like that feeling.

My biggest lifesaver, I would say, has been getting back into art. I think, if you do have any illness or problem, you really do need something to give your life a purpose. And I garden as much as I can. I’ve organised my garden in such a way that it’s very easy to maintain and very easy to garden.

I grow my own fruit and vegetables, which doesn’t take as much time or energy or is as difficult as people may think. I have kneeling pads, I don’t have special, don’t use special tools, but I do use a kneeling pad. I’m a, I’m a knees gardener. I mean, if I get stuck I just call my husband and he comes and pulls me up.