Yes and when you have been through spells when you have not slept well do you change what you do during the day. Do you think oh I didn’t have a good night’s sleep I am going to do this that or the other?

No I don’t think so.

You don’t?

If I am working in the evening I don’t want to stop. I go on quite late and then I find my mind is still working and so I may have a job getting off then.

Okay so if you work late into the night it can stop you getting to sleep?

Yes.

Okay and you never find that losing sleep affects how active you are during the day. Does that make sense, for example if you have a bad night?

Oh well yes, you don’t feel so good in the day. It is like if you are like jet lag it feels like that.

Yes, trying to keep going?

Yes.

So would you change what you do during the day, would you ever say I am going to have a nap now?

Sometimes you try and doze off sometimes in the afternoon.

Oh you do just to help cope with that?

Yes, hm.

I think it certainly did when I was newly diagnosed but I am a fairly old war house now at this and I sort of try not to let it affect me. I am very well monitored by the Health Service. We are seen every six months, either by a consultant or a junior doctor or quite often the specialist nurse and they know their stuff and quite often I go over there for my monitoring check and we just sit and talk. And a lot of these things crop up then, and they do a chart about on the level of one to so and so how are you in the morning and that sort of thing. And I have tried, it depends what I am doing, I definitely get a bit twitchy if actually I have got to get up early for a reason like to go somewhere. Like to go somewhere and going out for the day or something like that when I do go out. But I take a long time to get dressed and it is just the sort of mental attitude I think really. But I certainly, if I have had a bad night, I try to say well, you know, that was a bad night, I will have a better one tonight sort of thing and get on with the day because you do what you have got to do really.

So would you change anything you would during the day?

Occasionally I have had to cancel things and say well I really haven’t been feeling up to it, but not that often I don’t have it. Equally I have, I lack confidence when I am out walking. I am fine in my own home I know where I am going, but I am not good out at all. So going out is quite stressful, but I won’t, you know, I won’t cancel it because it is stressful, I will only cancel it if I really don’t feel up to it, because I have had some falls and you lose, you know, you lose that confidence.

So sleep is important for you in those terms of you can get on and do what you need to do. Have you ever had a day when you have said, I am just not going to do that. So you said you have had days when you have just not wanted to get up, but have you slept so badly would it make you change your routine for that day. Or would you even plan going to bed earlier at night?

If I had had a really bad night I will linger in bed, perhaps an extra half an hour or even an hour, even take my breakfast up to bed and have it there.

So it is not that you are trying to sleep, you just

I just need to relax.

Right okay.

And there are, quite often I find now I have to use more and more will power to actually do things. I get not exactly a mental block but I have to – things that I have done almost on automatic in the past have now become more of a problem.

More of a challenge for you to do?

It is more of a challenge. It is more of a difficulty. Just routine things that you wouldn’tjust like having a shower sometimes makes me feel very tired afterwards.

Right. Actually, you seem to be a very active person to me. It sounds to me like you’re ..?

I am reasonably.

Yes.

I like walking. I did a lot in my past. It is only recently I have given up walking on the south west coast path.

So if you have a really bad night like that will you go to bed earlier the following night?

No. No I never go to bed earlier, no. I might have a nap in the afternoon but then that is never for very long. I might sort of sit back and close my eyes like you do probably for about half an hour something like that, but that is all. But we still don’t go up to bed early because of the night before.

Oh okay. Right. So the nap is that something you say after a bad night’s sleep I had better have a nap today?

Well no. If we have been out doing something or whatever. I might be out in the garden pottering about or cut the grass or whatever, and come back in here and especially as I say after dinner as well, just sit here nice and comfortable and all of a sudden just feel boomph as though my eyes are going a little bit. You know, so I thought well no problem, so I will just sit here and have a little sleep for a while. And then between half an hour, forty five minutes, something like that, because I know for a fact years ago if I had slept for too long during the day I would never sleep at night.

Oh okay.

Which is obvious really because you are sleeping too much in the day time. So it is never very long, even if I have had a bad night, it is never very long that I will sleep in the chair.

So if I said to you, you can have a perfect night’s sleep tonight, what would that perfect night’s sleep be?

Well I don’t know, because I think I’m used to what I do really. So it doesn’t worry me. I suppose I, if it went to bed tonight at half past ten, I wouldn’t expect to sleep through till 7 oclock the following morning. That’s not what I would expect so, I wouldn’t particularly be, I wouldn’t particularly be concerned if it didn’t happen. So I think I can cope with whatever really. I mean if I have a particularly bad night, which I don’t that often, but if I do, then I just get up and get on with it really.

So if you’ve had a really bad night do you feel any differently the next day?

Well I just feel slightly sluggish you know, my eyes sort of
it’s interesting what you were saying there, that even if I offered you the perfect night’s sleep you say that you’re okay with

I am yes. Yes.

Why would you not need to change. Why do you think that’s okay?

Well I think it’s just what I’m used to really. I don’t think it’s anymore than that. I don’t think it’s an issue. I really don’t think it’s an issue. I mean, yes, I don’t know. I mean on odd occasions if you have a night out or whatever or you don’t go to bed till one oclock but you’ve still got to get up and six or seven oclock, okay, of course I would feel quite tired the next day and your head’s not quite right and you’re a bit sticky behind your eyes and things, but I just think get on with it, and if you’re still tired you go to bed earlier the following night don’t you.

Okay so that’s something you would do?

I think you have just got to get on with it I think.

If you have a really, really bad night’s sleep, how do you feel in the morning?

Well yes, I occasionally go virtually through the night, that is very occasional. About three or four times a year I will and I feel like jet lagged you know, but a cold shower and thenbut I know then I will sleep well the next night.

So would you make any changes to what you do during the day or do you adjust what you do at night?

No, with a bit of luck I don’t have any long journeys during the day, but no I’ll just try and act normally. But I am aware there is that sort of feeling about you when you haven’t. Although by early afternoon I am fairly alert, then in the evening if I am not careful I fall asleep.

Yes.

So I bring the alarm down, if I am watching something I set the alarm for a quarter of an hour and funnily enough knowing that is set I don’t fall asleep, but if I didn’t, I would. And, you know, because there is nothing worse than enjoying something and the commercial break comes on and you are off and when you wake up the whole thing is finished, so I occasionally put a
So you wouldn’t try to have a nap during the day if you had a bad night?

I think that wouldn’t help. I don’t know. I think I would be better off just going through the day. Fighting my way through the day, and go to bed and get some sleep.