You see as far as we are concerned the, we, all of us have got some communities which are like blood related who are living here in the UK. But because of the situation, you find some of us are really rejected in those communities. So the only way to console yourself is to attend this new group and this canbecomes your community. And when you are in it, you feel happy. So you share experiences and, and… as the disease is still new, now most of us realise this thing.

When weso many people die, and the way people have died, we thought that at one time that we would go through that kind of thing. But with the help of other people who have gone through, who have lived longer with the situation than you, you get ideas from them and think it’s OK, I am going to live longer.

If somebody comes and say oh I’ve lived for 20 years on this, but if youfor example if you have only known you have this one for three years you say OK, I still have another 17 years to, to live, and you know. Then you become happy.

Sometimes even you forget about this thing now you, you continue with your normal life.

You know disclosing to children it would not really be a priority. But if one feels that it’s something that is helpful then you, you can go ahead and tell them.

Because you know you, you are looking at you know them having a tender mind and also you must think how they will handle it. Just like one of them he mentioned maybe they could pass it over to other friends. But even themselves because you see, they have still education and receive the education which still portrays this illness as a dying illness.

So ifin apparently a child’s mind will know that, my mummy or daddy may be dying. I think it weakens their moral and spiritual health in, mentally and emotionally. They will actually not perform very well in school setting. Because if you look at child psychology, you will discover that they’ve got different stages in which they can handle certain things. But in a big situation like this one, whereby even elder people like me, who has it , cannot handle it very well, I, I don’t see howa child can, can really handle itBut if disclosing is one way in which you can strengthen them, then do it.

Well medication shouldn’t be a problem nowadays because the medication has been simplifiedif you can imagine, there are very few people who take a lot of tablets a day. These days. Because many, many of these medications have been combined now into like one tablet and so on.

It used to be difficult in around, say up to, up to around 2000, that’s when some people did take up to 20 pills and so on at a go. It was really distressing and worrying. And that’s the time when it had so many side-effects like the body redistribution, your tummy, your belly.

But these days they did a lot of research, the medication is very simple, it’s just like an ordinary medicineThey keep on improving everything.

Yeah it’s, yeah, it’s just like it’s now food, when you start taking it you get used to it.

Before I didn’t want to do sport and everything because I was saying to myself if I get injured orYes, I worry about doing too much sport and something happened. But then after I went to the other PCT, what’s his name? Primary Care Trust, so they advised me and then I went to a gym and things like that. And I said that I can’t do it! I can’t run, even five mile, you know, easy. At first I couldn’t, I didn’t think I could. And you, you don’t even want to try, because it’s like, oh that’s it, that’s it. So I wait until my time is up…

But then now I, [laughter] I have, I’m not thinking about giving in, I am thinking about fighting it. And any way I can. Mentally. Physically. I even ignore it now, I forgot about it, and I go on with my life. I take every day likesometimes I tell myself, theres a accident, people die. Even still I’m alive. Some die from accident, why should I put myself in all those positions, I should get up and do something for myself.

Yeah it is very important, I for one, yeah, religion is number one. Yeah because I believe in, in other powers other than me, and people around me. And so because of that belonging, because of that belief, I always think that this life is a normal life which we are all in, but theres a better life which is coming.

So, and, and it gives me power to grow spiritually, even when I take whatever I take, food, water, medication. But I know that all those are controlled by a, by a super power, who is God. I can take those and collapse, dead. But as long as God he wants to sustain my life, the medications will work, the food I eat will work, and everything around me will work.