So you mentioned tiredness as well. That’s one of the symptoms you get these days sometimes.

Yeah.

Can you describe the tiredness to me?

Because I’m very active, I will be dashing around and all of a sudden my body refuses to work. I can’t remember what I’m doing, my memory sort of gets, I can’t remember anything, and my muscles and all over my body just feels as though it’s like jelly and I have to go and sit down. And if I sit down I can normally sleep for about two hours, which is unusual for me. When I wake up I’m fine but then I have to know my limitations, so when I’m getting to that stage I will spend a lot of time resting in the afternoon. I pace myself, do my jobs in the morning when I’m fit, in the afternoon I will sit and have a rest, then I’m fine. But it’s generally your body won’t work and you get a fuzzy brain as well.

So presumably your symptoms sort of came on gradually after that?

Yes, I’d say for about three years I think nothing happened really. And then, as I say, one winter I got this sort of dip down. I think I might have gone to the doctor then and said, Look, I don’t feel very good But she said, Well, just carry on and if it goes on too long come bac, or Go to the hospital But it eventually it worked it’s way up and then after that I didn’t really bother because I seemed to come out of these dips on my own. At first I thought, This is it. I’m going down and that’s it But gradually I learnt that it was just a down. I don’t know why it, I think different people have different symptoms. Not everybody does that, you know, but it’s this, I just seemed to get over it on my own. I didn’t have to have any treatment or anything, these dips they just came and went, went and came, I think, whatever.

And can you describe to me how you felt when you were in one of those dips?

Very tired and, I don’t know, just generally lackadaisical and not sort of really wanting to do anything. I don’t think I felt terribly ill, you know, you could still get up and go but you had to drag yourself about. It was just like sort of having flu or something like that, I think, without the cold. But just feeling generally sort of not well and not particularly ill but just unwell and just very, very tired I suppose. But you could get about and do things but you just didn’t want to.

The first few months of being retired or semi- retired were very difficult. I eventually learned to pace myself so if I want to do something specific, like I want to go to a pilates lesson, I will make sure that I go to bed early the night before. I will be prepared to have a quick meal and a nap when I come home after it. I don’t always have to do so but I have to plan my life a lot more carefully than I did before because of the fatigue.

So what would be a typical day for you in terms of how much you could do and your energy levels?

Over the week I get about half of each day. I might get the whole of one day and not really be inclined to do much on another. If I’m not inclined to do something I’ve stopped berating myself with being lazy and just sat back and done very little, done the basic and let the world flow past me. So on the whole I get about half of a day to do something exciting like do the gardening for a little bit, you know, not heavy digging or anything, just weeding or whatever. it’s easier if I’m working on the computer but again I’ll reach the point after about three hours where I’m too tired to make any sense of what I am doing so it’s best to stop. it’s better to have a break and see if I’m better later and if I’m not better later then go for an early night, start again the next day.

What happens if you get it wrong and you overdo it one day?

I’m absolutely shattered and can’t do anything. I do doit and I know that I do it and I know that I’m saying to myself, Well, that’s your own faul, and my husband saying to me, You shouldn’t have done it. Why did you do that? Why didn’t you wait for me to do this But I then just accept that day and I may not even get dressed on that day. I may just lay around all day in my dressing gown with the heating on if it’s winter time, with the heating on. I’ve noticed that the sun and warmth help the joints, which they do with everything. They don’t help the tiredness obviously and I’ve noticed that I now start becoming breathless as well with it but I think that’s because of the white cell count and the red cell count altering that the breath, you start getting a little bit breathless with the leukaemia.

So it is a case of just accepting. it’s awful to think so but you just do have to accept those days. it’s taken me eight years now to get to that point of saying, Right, this is a bad day. I’m going to just accept this really bad day But I don’t tell myself off for having done the whole garden the day before or being out in the garden the whole day, because I enjoy my garden, I enjoy doing something like that. Or if I’ve gone out with one of my children somewhere and gone, I don’t know, if we’ve gone shopping or something like that, yes, I know that that day, by the time I get back it’s going to be, the following day will be an awful day, but I enjoyed that day so why worry about it?

I mean I now am no use after three oclock except for cooking lunch. All my social activities have stopped. I used to cook for the WI markets. Can’t do that anymore, haven’t got the energy for that. I used to help run the local WI branch. Certainly now I can’t do that because I’m too tired to go out in the evenings. I tend to have put on a bit of weight. I mean I know I’m a bit weighty but I have put on more weight because I haven’t got the energy to go out because I’m frightened if I go out I can’t come back. I used to do thirteen, fourteen mile yomps and I don’t do those. I’m nowhere near.

In fact when I was suffering from the chest infection and also the lack of oestrogen it was all I could do was to go round the shops in our local town on a Saturday morning to collect and do just the shopping in the supermarket. Once round the supermarket mid-week and once round the small shopping area I hadn’t got the energy. I was delighted to see that I could walk at a moderate pace instead of just plodding recently. But now because of the continual chest infections I’m so breathless that when I came, I’m doing a patchwork, City and Guilds patchwork, a guild thing and I went back to the work room the other day having popped down to the library to get some photocopying done and a fellow student said, ‘My God have you been running?’ And I said, ‘No I’ve got bad lungs now.

So, enough, yes my health has deteriorated. My social life has deteriorated and whereas I was renowned in the family for feeding the five thousand, and I entertained people all day, I can’t do that now. I can give them either tea or I can give them a lunch but I can’t do the whole day. So the contacts with the family are actually decreasing and I’m becoming more and more isolated.

I would like to swim but I’m frightened of going to the local pool to pick up any bacteria. If I had a swimming pool in my own garden I would love to swim. But again I need to have everything at hand so that if I’m too tired I can go and rest. My mother lives about an hour’s drive away and the roads are particularly appalling at the moment and it’s very hard driving in the ruts over to her town. And by the time I’ve got there I’m quite exhausted with the traffic conditions and the road conditions. She is not in very good health being ninety-one and I feel unable to do anything for her because I know I’ve got to drive myself back again. You could say my husband does some of the driving but no, I am such a bad traveller and I can be travel sick anywhere. I have so little confidence in him. He’s had his cataracts done recently so he does see better but I’m still frightened of his driving because he is quite a lot older than me and his reflexes are a lot slower than mine. So I don’t like being driven. I really am travel sick.

But no, I was very cross. I’ve got an awful lot I want to do. I’d never even considered retiring at this age and it’s limited what I can do. So while I make the best of what I can do I sometimes get a little bit peeved that there could be more that I could be doing for myself, for other people, for my family particularly, that it’s limited me, so just cross basically, bad tempered, grumpy so
Tell me about how it’s limited your daily activities.

I have to plan and I have to be willing to not do things. I can get up knowing that I should go, for instance, shopping for something and just realise that there is no chance that I’m going to do it. And go around, do the minimum, go back to bed with a cup of coffee and then find I’ve fallen asleep reading a book, wake up three hours later. it’s very pleasant to be able to do that. it’s much better for me to be able to do that without having to drag myself out to work. But it is limiting, but there we are. Alot more fortunate than some I’m sure. Sometimes you find you’re tremendously with it in the middle of the night, particularly if you’ve had a bad week and you’ve had a lot of sleep and you suddenly find there you are two oclock in the morning, you’ve got all the energy in the world and you’ve missed three things you wanted to do in the past four days. And that’s a bit irritating, but that’s when I go on the net and do some work for the CLLSA or just talk to people around the world. So at least I can still do something; thank God for the internet.

So with the two of you not too well do you have any help around the house and garden?

Some friends come up occasionally and do gardening for me about once or twice a year. Other than that we try and set things up so they’re easy care. You know, we don’t have carpets, we have hard floors. Any furnishings we have will go through the washing machine. Basically if something looks pretty but it’s got a label on it that says, You must do X, Y and z, then we go somewhere else and get something not so pretty that’s easier to take care of.