Right, I've been married for 15 years to Michael and I have a nine year old son, Joseph.

Well, with spina bifida, probably the biggest problem for me on a day to day basis is mobility. I use a wheelchair for work and outside. I can walk a little bit but I find that what tends to happen is that my feet tend to degenerate. I get ulcers and they're an ongoing problem. They have been since my late teens. So using a wheelchair means that I can keep off them for a certain amount during the day and make the most of being able to walk when that's opportune. For example, if I go out to a restaurant or something I might choose to get a taxi there and not take the wheelchair because it's only just a short walking distance at the time. Besides that, I have problems with incontinence. I had many, many years of trying to deal with bladder problems and that was actually resolved about three years ago, followed a colpo- suspension and self-catheterisation. The operation had been done in my early twenties, but wasn't as successful as the one that I had re-done about three or four years ago following pregnancy and that's been absolutely wonderful. I'm drier than I ever have been for the first time in 30 years. I was 36 years I suppose at the time. A slight problem was that following that I had other technical problems with prolapse of the bowel and the vaginal wall and that sort of thing. They were put right last year and since then I have had extreme problems with my bowel just seizing up and it doesn't want to do anything, so I might just see what happens as a result of that. I've got appointments for that over the next couple of weeks.

The exact opposite. I'm finding I have to take massive amounts of laxatives, the bowel is just sort of, there's no activity, it just really, really has just sort of reached a point where over a space of 10 / 14 days I'll just bloat up and bloat up and bloat up until a massive amount of laxatives and manual evacuation will eventually start to get things moving again. So it's kind of ruining my life at the moment. It was never a problem before. I always stuck to a high fibre diet for most of my life. It seems to have been since following the surgery last summer that at some point, whether or not there has been a bit of interference with nerves or something - I had a uterosacralpexy so they've gone right through to the back of the spine to support all the internal bits and pieces and whether or not something's happened there or whether it's adhesions or what I don't know. I've been having various diagnostic investigations for that. That is my biggest problem at the moment. Hopefully it is going to be resolved. I've had a lot of scans and tests over the last couple of months and I'm going to see a surgeon on Thursday so I'll wait to see what he's got to say about it. If that's resolved, then I would say there aren't any problems and life just goes on. But at the moment that's being a bit of a problem in that if I want to go away for a few days I'm having to make sure I take a day off work, take laxatives the day before and spend the day in the house and then go out. You know, if I want to have a couple of days away and not being ruled by it. The other side is of course that after about four to five days if there is no movement you start to get severe headaches, I can break out in spots, I get very bloated, irritable and by seven or eight days I actually just take to my bed for a day or two. I find I can't actually move around much because I just haven't got the energy and it must be a build up of toxins and that sort of thing. I don't know the technical side of it. It's not pleasant at all and it's only been this last 12 months and I am desperate to get that resolved. Other than that, all the other things like the mobility and the bladder problems, they just tick over fine and everything's sort of wonderful.

It's quite uneven actually. There's one or two people tried to identify it medically over the years. The lesion probably covers about three of the lumbar vertebrae. I have no sensation in the buttocks and the outside of my legs at all. I have no sensation from the knee down on the left hand side, but I do have sensation up the inside of the left thigh, but I have some sensation on the instep of my right foot, up over the right knee and then right up the inside of my right thigh, which is why I can feel if my bladder or bowels are full. I just don't have the ability to actually do anything about it.

Muscles tend to work in pairs and that's fine, but one lot of mine are working and the other lot aren't. You know, it's sort of one set with responses and one set without. It causes problems in terms of I've done daft things like burning my bum, leaning against a radiator. I've had severe burns to my feet from putting them on a hot water-bottle because they've been very, very cold with the circulatory problems they do get cold and that stops ulcers healing up and I've done daft things like using those beanbag heater things and then it could take six months for a burn to heal because of the slow response of the skin. I'm getting better at that sort of thing. You learn.