And I think that gradually over time it’s taken, you know, a couple of years for me to kind of properly get my life back and I feel like now that I have got my life back and although it’s not how I’d like it to be and I feel like I’m suffering and there are real frustrations but I am living the life that, that I almost would have led before.

I still have pretty much enough of a social life and you know I can, you know I do get out and about and I’m studying. I’m doing something productive and everything, everything else in my life apart from the pain is good. Because I always see it as two different things that are going on.

Theres my pain which is causing me suffering but theres also the disability that goes with it. And they are like two different things and you can get round the disability to a certain extent because you can do things like drive, you can, I’ve got a disabled parking badge, I get these subsidised taxi journeys and that kind of thing and I’ve got my wheelchair.

So you can get round the fact that you are disabled. You can’t do everything that you would like to do but you can do most of it. But you can’t, I can’t do much about the pain at the moment. That’s just there but at least if I can tackle the disability side of it and I feel like I have.

Just, you just, I think one of the difficulties with pain is that you can’t see it and like everyones, you just feel like everyones carrying on around you and you just feel like shouting out to someone. ‘Look at me, look what I’m going through and then of course they all do care and they all really try and understand what you are going through and stuff, but they can’t really appreciate what it is, what it’s like.

And it’s kind of, it’s also like a vicious circle because you feel low because your pain’s bad and then your pain gets worse because you feel bad and it just, you can get yourself into this kind of downward spiral and it’s really, it can be really, really tough to get and lift yourself out of it again.

Tell me, how do you get out of it?

Just kind of, I kind of almost like talk sense into myself, I just like make sure that I do things that are good fun and see my friends and you know.

I’ve got friends who I think all understand differently and all act differently and they’ve got their different approaches to it all. I’ve got some friends who will ask me probably every time they see me ‘How’s your pain? How are you?’ like really outright question and then I’ve got other friends who never ever ask but I think most of them do really appreciate what it, what it is that I’m going through I think some of them don’t, but I’ve found people to be very, very supportive all the way through.

And it’s like a real help when people do just say ‘How’s your pain?’ and like okay sometimes you are not really in the mood for it because you’re just out enjoying yourself or something but it’s just really nice to have someone be just so honest and upfront about it because a lot of the time it feels like you’re just going through this thing secretly.

It’s like, sometimes I’ve felt that I’ve got this secret little world that no one else knows about because you, I don’t mention it usually and they don’t mention it and it’s like we are pretending nothings actually going on. But I’ve got, I think I’ve just got different relationships with different people and it’s quite nice to have a variety of approaches to it all. Like it’s nice sometimes to be with a friend who doesn’t ever ask because then you can just kind of get on with things and feel like you’re just you and you’re not your pain.

It’s all kind of a bit of struggle. They are not really geared up for it. I mean it’s been the same with all of the help that I’ve needed with my disability, has been a matter of finding things out for myself, like I get Disabled Students Allowance which I didn’t know existed until, I can’t remember how I found out in the end but I was already like a third of the way through my Masters course before I knew it even existed.

And then I went and got assessed for it and it was like oh I can have all these things and they gave me a laptop so I could work from home and they gave me taxis in and out the University and stuff like that which made such a difference which was the main reason why I didn’t quit my Masters course because I got all this extra help.

I was wondering what advice do you have for someone doing the same thing?
That it’s really a good idea to do and to try and get as much information as you can, but to be careful because some of it comes from suspicious sources like private hospitals and private doctors who are obviously just trying to make some money, and I’ve never actually found anything that I can say is bad advice or whatever but I’m just suspicious that it’s not all very accurate information.

But that yeah, you can, I’ve found it really helpful to get more information on the internet and I think doctors are kind of getting more and more used to the fact that their patients will know more about their own condition and a lot of them welcome you coming up with ideas. I mean I’ve had doctors say to me ‘What do you think’s wrong with you. Have you managed to find anything on the internet that you think it could be?’ And I think that’s good, you know, that they let you have your input.