So I get an impression that you obviously value healthy eating and then are conscious of those links to diet and health?

I hate the word junk food. And I hate junk food. Won’t have it in the house. The only take away meal I will have is, I love fish and about, well, once every seven or eight weeks I will have fish and chips. Now she doesn’t like fish, so I have to get something different for her. But, no, I love fish so therefore I do have a take away I suppose you’d call it.

Yes, so food’s important. How do you feel sleep fits into health. Do you feel sleep is important?

I think it’s very important.

You do.

Hm.

In what way?

I put it on a par, sleep with food, because without food, without a proper type of food, you can still get, you soon get physically run down.

No I am very careful what we eat.

So that sounds like you have a healthy attitude to life?

Well I hope so. Yes.

Where does sleep itself fit into that? Do you regard it as something that’s important?

Ah terribly important. It goes alongside eating properly and exercising. You know, eating properly isn’t it, having exercise and sleeping are the three main things to keep you going to keep you functioning. To keep you healthy.

Is sleep something, I mean foodis something you go without, but is sleep something you cut short or curtail at any point or something you feel you can manipulate I suppose is what I am asking?

No.

Oh that is interesting.

I have really got to have my sleep. I am a much better, not better person, but more active and I as see it a nicer person if I’ve had my sleep, otherwise I can get very scratchy.

So if you’ve had a really bad night or you have those shifts do you notice a change in your temperament?

Yes. I’m very short tempered.

Are you. So are other people aware of that?

I think they mightdo yes. I think so. I try not to be but you can’t help it. It is how your body is.

Can you take me back to, you mentioned about this diagnosis of sleep apnoea, could you take me back to that and tell me how that came about, what sort of led up to you seeking help for it and how that happened?

A good question. Very difficult now in 2008 to remember. All I can think of was the snoring that I must have gone to my GP and the GP referred me to the unit in the local hospital. Because they did this research into sleep apnoea, and therefore I was taken on board there and I spent two separate nights, they did one sleep study and then because of the results of that whatever they were, they said we want you to come back and do another one, which I did and that was difficult because I had a camera like this focused on me like that and I found it was hard to get to sleep. I was too aware of it, but whatever, they said I had sleep apnoea and gave me this CPAP machine and as I say it was too much to cope with.

How long did you have it for?

Well I only coped with it for a few weeks really.

Did you have anybody sort of advice you mid-term what they do now, is they go back to you and say how are you getting on, they try and help you get through?

The thing that spoilt it if you like, was when that was diagnosed, because I was on their books as it were, by this time you see we had moved south, so that it split, it cut me off from them, because you know, once they’d done this diagnosis and I’d had this machine and I couldn’t cope with it, I suppose really it was my fault, I could have gone back and said look I’m not coping and can you help me. But I didn’t do that. So there is no responsibility on the hospital.

I can’t really remember in detail but you see there are a lot of other times, I can’t remember if it was then, but there were times, when I have woken, this is the problem that I think I have had for years, and that is, occasionally I wake up with problems with my breathing. Breathless and for people who don’t have that problem they probably don’t appreciate what it is, but when you are breathless it can lead to a panic attack and I have had them. And it’s pretty nasty. You feel you are not going to breathe again and it’s a horrible feeling. So it’s your mind as well as the physical side.

How often does that happen?

Thankfully now not so often, but it used to be more frequent. It used to be a big problem, because I can remember I would wake up, and [my wife] would be very helpful to me, you know, reassuring me that everything was okay and that. And of course I had probably woken her up. But it would gets so bad sometimes I would have to say, I’m sorry but I’m going to have to get out of bed and I did and I would get up and go in the kitchen and make a drink of tea and sit down here for sometimes an hour, two hours before I went back, and even when I went back to sleep then it wasn’t good sleep you know.

How I sleep now? Well we basically go up at the same sort of time. Round about elevenish. We never used to go to sleep tillsorry we would never go later then say ten oclock half past ten when I was working. But because of this problem about not being able to sleep, I said well it would be probably be better if I go later when I would be more tired. So we tried that and it didn’t make any difference. I mean I could be sitting down here and I would sit and do the crossword, if there wasn’t much on the television, I used to do sodoku puzzles as well and then I would go out for a last cigarette, and go upstairs, into bed and by that time I am really feeling tired. I can get into bed and just for some reason I will lay there and initially the first five minutes, lovely, snuggle down like you do, and then all of a sudden, something just seems to wake me up and then I just turn over this side, turn the other side, lay on my back, I can’t sleep on me back or me left hand. I always go to sleep on the right hand side, on my right. And when that doesn’t work, I start to get frustrated then. And, well this is no good, just laying here I am not getting anywhere. Then I come downstairs in the garden, have a cigarette, about twenty minutes or something like that, then pop upstairs again and eventually I would go off.

But it just takes such a long time and then I possibly go to toilet, about say 2 oclock, because it is only about a year I had prostate operation because I had a bladder problem you know, and that’s made a hell of improvement. It really has, from the point of view of not getting up during the night. But once I do wake up, then it’s a job to get back to sleep again.

So perhaps if you could just start by giving me a description of what your normal night’s sleep is for you as it is now?

Well, I we sit around, watch television up to about ten, ten thirty. Retire at 10.30 to 11. Basically we hope to sleep throughout the night which is not always the case. Due to, as I mentioned earlier, about being a diabetic and suffering some hypos they can come on at any time. Day time or even during night time hours, so consequently if you get one, it sort of automatically triggers things so that you wake up, you know, you can’t have one and continue to sleep. It wakes you up, so you have to do something about it.

So how are you aware that you are having a hypo what happens?

Well it is a strange sort of feeling really, you sort of become disorientated, but of course that doesn’t matter really if you are lying in bed. You are not going to fall down or anything but the point is you have got to make the effort, get a grip of yourself to get out in the kitchen to make a cup of tea, you know. You tend to shake and you lose focus with your vision that sort of thing you know, it can be very bad outdoors anything like that, but of course if you are indoors you are all right.

I think it is not always the pain, I get, I often get very hot at night and I try and keepand then I get cold. So you tuck the bedclothes, a bit, you know, a bit like, you know, the old hot flushes, you know, you toss the bedclothes off and then you are cold. It is quite often with diabetes as well having to go to the lavatory. So it is not always the pain, but it is a lot of the time. I am conscious of it. And I am conscious of having quite a low level of sleep before I actually wake up. It is almost as if I take a long time to come round, you know.

So when you wake up in the morning after a night like that, you don’t feelhow do you feel?

I feel pretty yucky actually, but then that is expected with RA and I have learned now how to deal with that. I don’t suppose you ever really feel rested is the word. And I do take a long time to get moving, but that is part of the illness. I knew that from day one, but as I have got older, it has got more severe.

So you were diagnosed in 1996?

Yes, in the October, yes.

Before that how long did you have the diabetes or was it

No the diabetes wasn’t diagnosed until four years later. So I was having excellent sleep, you know, I was a straight forward really like I have been all my life.

But then eventually I read a book. I don’t really worry about not going to sleep. I just get a book out and read it, and that gets you through, quite a lot of them I eventually go off. But last year I had a lot of trouble with arthritis. And I couldn’t get to sleep because of the pain, so I used to get up and make myself a cup of tea and come down and look at the television. See all the midnight programmes on the television. And then I would have to doze off in the day time. I was rather short of sleep. But now, at the moment
So you had this spell when you were in pain?

Hm.

You were in pain and that was stopping you getting to sleep?

Yes. Hm.Hm.

And did it wake you up in the night as well?

No. No. Once I got to sleep it seemed to be all right. But it was over the hip.

Well that is a bit better this year and I am not actually, when I am in bed it doesn’t getjust walking about it is a bit painful. But actually lying in bed doesn’t seem to make much difference.

I was diagnosed with Motor Neurone Disease in 2002 and I was given two to five years to live and its now 2008 and I’m very lucky that the disease has gone into some sort of stabilisation. My legs are greatly affected by it, but luckily from my thighs up it doesn’t seem to have impinged. It did for a while, and one of the symptoms of that is twitching and I had twitching in my arms and my pectoral muscles which worried me to the degree that I was, we were both worried sick, but that seems to have somehow gone into some sort of holding pattern as it were. But my legs twitch at night and also unfortunately my spine is breaking at the bottom on four and five I think it is, the spine, the actual column has opened up and the nerves inside have been exposed to the elements as it were and I have, in the last three years, I have had very, very severe pain in my legs, it was absolutely terrible and it was so bad that I was falling over and things like that, and together with the very weakened muscles in my legs it made walking very difficult. So luckily I went to a pain clinic and they gave me first of all a drug called gabapentin and then they gave me a drug called pregabalin and they’re drugs that control as far as I know control the brain’s perception of pain and at one stage I couldn’t sleep for any length of time at all, the pain in my leg was absolutely terrible. Terrible shooting pains up my legs, which would keep me awake for hour after hour after hour. I’d get up, and this is something I really should have mentioned before, but I used to get up and just put cold ice packs on my legs and I’d do anything to control the pain and then it was like my, you know, my spiritual moment, when this doctor at Windsor at the pain clinic gave me these drugs and its reduced the pain by about I should think 80%, 70-80%. So now generally I get a good night’s sleep, undisturbed sleep, because of my legs, because the pains have been controlled. If I sit on a seatif we go out to dinner or we have people in for dinner say and I sit on a dining table for four, or five or six hours somehow it impacts on my spine and my legs start playing up again and the drugs don’t control it completely. But I must admit in general terms apart from that I sleep all right, but for a period of around eighteen months, it was truly horrendous.

Right so you feel that’s all under control now?

Yes. I mean my feet and legs hurt all the time, but not bad enough to keep me awake at night.

Is that linked to the Motor Neurone Disease or is that just a separate issue?

No it’s a double whammy, it is not fair is it.