It does worry me how it affects my daughter a lot because, you know, I can think to myself that I’m not affecting her but kids are so perceptive and I know for example, and even more so at the moment because I’ve been in hospital and been particularly bad over the last few months that she doesn’t come to, she won’t, she does sometimes without, when she doesn’t think, but if she thinks about what shes going to do, she doesn’t ask me to pick her up, shell ask somebody else to pick her up because she knows that I can’t or I do and it hurts me and I, you know, or shell pick up a reaction.

So that’s in effect mummy in my mind my, you know, my daughter doesn’t feel that I can pick her up. You know, it’s something so simple, but it’s huge I mean, you know, between a mother and a daughter or you know, any sibling, I think that’s quite big. And playing, like all her rough play, all the, all the things you know, the rough play is so important, you know roughing and tumbling and running and jumping and pretending, even just pretending to be an animal, like jumping up and down like a frog on the floor, which she loves, and pretending to be a lion and crawling around on the floor which shes fantastic at and she loves improvising.

She doesn’t even try to initiate it with me, she waits till daddy gets home and shell do it with him. You know, so theres effects or, you know, theres something going on that’s obviously, I mean I don’t know how it is if you can perceive it as negative but I don’t like it, you know because it’s out of my control and she shouldn’t, I don’t believe that, well I’d like not to believe, that she would even know that theres anything wrong.

But shes 21 months and those little things that I can pick up on at the moment, shes obviously, shes been influenced or theres something going on that’s affecting my daughter, enough for her to not act the way that she wants to act with me or the way that I would like her to act, or perceive a child should act with her, with her mother.

Certainly my daughter, her view on disability has changed considerably. She has become involved, has been involved now for a number of years now, with riding for the disabled and one of the things that the manager of the centre has said is that shes got a knack with people with disability.

I’m sure it’s come from those early days. Because it’s sort of, even at that age, to see your, you know, sort of Dad fit one moment and then not seeing him for, I think it was about seven or eight weeks, sort of must have had quite an affect and you, and I think that’s the way it’s manifested itself that she now, you know, has a real understanding which a lot of fifteen year olds don’t have and it’s probably going to shape the career she wants to go into.

So yes, and then on the other side, my five year old just adjusts. You know, one of the big hang ups is that, when you’re thinking of having another child, is that can I be a proper Dad? You know, can I do everything that a dad would do.

And I say to anybody ‘Yes you can, but in different ways. You know, I can’t run, I can’t jump, and I find it hard to get on the floor and sort of have a bundle, as boys like to do, but theres other things you can do and my son’ll say ‘Oh well, we won’t do that because we know Dad can’t do that.

Tell me about the things you can do with your son…

When he says ‘Well you can’t do that’ we do all sorts of other things. You know, I’m a self-confessed anorak, I like railways, and we both get involved in those and were actually building a model railway at, at home. And we do things like that and the area we live in theres a lot of military aircraft and were quite involved in things like that and so it’s all about, it’s not compromising, but it’s adjusting.

As I said, you learn about things that you perhaps not of thought of in past and you learn new things and you learn that with your children as well and you’re able to support in other ways. You know, teaching them things and helping in education and we just have a laugh together.

Over the years obviously because my conditions I’ve had for so long now, different things have come up that I’ve had to go into hospital for, say a laparoscopy or an appointment, just an outpatient appointment at the hospital and they’ve had to go say round to their grandmothers, because I’m not here when they’re home from school.

I don’t think I’ve actually sat down with them and told them exactly what it is because, as I said earlier, I tend to deal with things myself. I think I have explained to them about endometriosis, but children are children, they’d rather watch television than worry about what’s up with Mum, you know.

But if the situation, or at that time has arose and they’ve asked questions, I’ve always answered them. I’ve never told them, you know, to go away or anything. I’ve always answered any of the questions that they’ve got and I think that’s very important. That, if you do have children and you’ve got a long term condition that they, if there is a question that they want answered, that you should answer it as, as clearly, so they understand, depending on obviously what age they are.

You know, I don’t think they should be told to shut up and go away, you know. I think that’s the wrong attitude. And that goes with other members of your family as well, not necessarily your immediate family, but because other people obviously are involved. If I’ve been in hospital, my parents have had to help and my husband’s parents have helped and friends have helped, and so most people are aware of what’s gone on over the time and they’ve all been very good.

Did you feel that they ever had perhaps to do more?

Oh yes aye, in the early days definitely, and I felt it, my oldest boy he was really good, the youngest was really young he was only 7 when I was diagnosed, but my daughter and my son they coped you know and I always felt as though more so my daughter her teenage years. I always felt guilty about that because she is the type of person she is very authoritative she likes to run the show, and shes very thorough in all that she does and she took over the Mammy role when I’d be in hospital or upstairs and that was the way it was, and I think the boys were more afraid of her than they were of me.

But she assures me and shes always said name me anything that I wanted to do that I didn’t do, so I’ve got to accept that, but I mean if you torture yourself with that it can lead to other problems, if you can’t take the word of your family, by saying fine, we maybe had to do this and that but that is what families are all about and its still the case even within like daughters in law, son in law, if anything happens they all rally round, you know theres still that great sense of family within us and around us and in the extended family.

But I definitely, that used to really worry me that I felt as though her teenage years weren’t as carefree as they should’ve been, but she assures me that there was nothing that she wanted to do that because of me she didn’t do and as she said I was 25 when I left the house to get married so it wasn’t that bad a living, but you do you do feel guilty, any mother would feel guilty, be it even just for a short period of time rather than an ongoing thing.

I think one of the things perhaps is the effects on children of people in chronic pain. I can only go by my own experience but I think one of my major concerns when the children were little, as I say they were six and eight when this first started and I was having lots of surgery and hospital admissions and all sorts of frightening things.

I became their unreliable mother and certainly not a normal mother in that I couldn’t go to school events, take them to school that sort of thing. I think our priority was to keep things as stable and hopefully unfrightening for the children as possible and as secure as possible. And I think perhaps that’s something we worked hardest at because we were determined it would affect them as little as possible.

Obviously there were things which I couldn’t do or my husband had to do alone with them, but I think for a lot of people there could be more help. I know there are some books now talking about chronic illnesses and bringing up a family and the difficulties in the way that issues can be handled but looking back I didn’t do enough explaining to my children.

I don’t think they suffered but I’m sure they were frightened at times and because I was so determined not to go to pieces in front of them. I had my own emotions under such a strong leash that maybe it made it harder for me to try and talk to them about what was happening to me and maybe it would have been helpful if there had been all sorts of books or somebody else, we didn’t have grandparents available who could perhaps have done that sort of thing and explained to them but I think, I think it’s hard for children.

On the other hand, I do think that if they had grown up in that sort of situation, they are perhaps more compassionate and understanding of people who have disabilities or problems of one sort or another and aren’t afraid of them that they will go and talk to people, you know they don’t ignore people who perhaps are in a wheelchair or something like that.

But I think that maybe it’s something which isn’t covered enough in the in the services that are offered to chronic pain patients and maybe there should be more research and help done to alert people to the possibility and the problems in the first place and then help to teach them strategies and think ahead of issues which may arise which may cause problems for their children. You never feel that you’ve been a good enough parent but you can obviously can think of things you’ve done better.

My grandchild is three and he is just the most wonderful little chap and yeah I actually feel very needed with him, I pick him up from nursery school I take him to school and bring him home and look after him until his Mum picks him up. But she knows that there are some days that I just can’t do it but I will push myself to do it.

There have been very few days when I haven’t been able to do whatever I am supposed to do. There might be a day when I can’t look after him because of the pain but then I will pick him up from school and take him to somebody else. So that is good that does make me, you know, at least do that bit.

But no hes given me a new lease of life really. It was hard at the beginning when I couldn’t pick him up and obviously he didn’t understand that, you know, Nanny can’t pick him up. But now he just climbs up which is good because I haven’t actually got to actually physically pick him off the floor hell climb up on my lap for a cuddle. So yeah, I suppose he understands in his little way. But no he is just wonderful and he always makes me feel happy.

Has your pain affected your life with your grandchildren?

They’re pretty good really. Granny goes up the stairs on all fours and comes down on her bottom. At one stage, [Grandson] round the corner he was lovely, when he was about five or six, hed say ‘How’s your back today?’ and hed rush and get a cushion and put it behind my back. He was really sweet. It does frustrate me that I can’t play with them as I would like to.

But they don’t, they seem to accept it, children are very accepting about all this. I get sort of fed up because I can’t get down on the fl, it takes me so long to get down on the floor through lack of mobility as well as pain and I can’t go on long walks with them and things like that.

I’ve got the scooter now and hes already had a go on it. So, you know, places that they go that I haven’t been able to go before, I can go now, because I’ve got the scooter. Young children seem to be very forgiving. None of them have ever said ‘Well, what you doing that for?’ or ‘What’s the matter with you?. They just know that I’ve got something wrong with me that means I can’t do certain things and that’s it.