Do you find that your pain varies at all?

Yes, it varies. Yes, I mentioned this earlier like today, maybe it’s my best day, I feel that I don’t have a headache. Every three, four days, once a week at least, I get very, very bad headache, which will last like twenty four hours until I take the heavy medication, it will not go.

Then, if I feel sleepy like at night and I don’t go to sleep at that time, then I develop headache and it will continue the whole day. So I have to sleep like eleven o’clock, twelve o’clock, if I keep awake for one hour extra, for some interest I have, then I get the headache, yes.

Does the pain often disturb your sleep?

Of course, especially at night, I feel it more. When I lie down, I have to sleep on my right side, the shoulders gives me very bad pain. So I try different types of positions and the pillow and try to adjust myself until I sleep and I sleep with pain sometimes.

Do you ever have to get up in the night because of the pain?

Oh yes, yes. Two times like, sometimes, even if I go to sleep late, I wake up early morning. Like last night I took a sleeping pill, two milligrams, I slept about two o’clock after midnight, after I rubbed the ointment and things. I went to sleep at one, I couldn’t, then I got up from bed about two o’clock, I took the medication, I did the requirement and I took the sleeping pill, ibuprofen also, and I went to sleep. Then I wake up at six o’clock because the pain again started.

And it is very lonely in the middle of the night when everybody is asleep. So that annoys you, because they’re asleep and you’re not and you just seem to be the only person up, you know, you watch the television and you know make a drink, perhaps have a cigarette or something, but you’re on your own, you feel very, very isolated at night.

But most of the other people within the support group, they’re all awake as well, but you don’t like to ring them ‘cos it might be that one night when they’re sleeping. But we were going to have, sort of, you know, try and do some sort of help line but we couldn’t really sort it out how it would work, but it would be great, you know, if you knew that somebody else was awake in the same situation as you and you could ring them up and have a chat with them, because it is a very long, lonely night.

You know, three, four, five o’clock in the morning is just awful and then you’re always thinking, you know, I really ought to get back to bed and try and get to sleep because soon it’s going to be light and it’s going to be time to get up and then weve gotta start this all over again. But the night is probably the worst I think. ‘Cos you’ve also got to be quiet, you can’t go, you know, thumping around doing things in case you wake, you know, other people up or disturb the dog or whatever. Don’t like the night.

Yeah. Well by the end of the day I find, with the pain, the kidney pain from the lack of drainage, the niggling sort of adhesions pains along with the pain killers, I can manage most days.

But, one thing I haven’t really mentioned, is that I’m often awake at night and I end up getting up and walking around the house and sitting down by the fire downstairs and I tape a lot of stuff on the television during the day so that I can watch it at night through my headphones.

Because the pain seems to be worse at night. I don’t know whether it is because you’re lying down or whatever.

You mentioned earlier about fatigue and pain is that an issue?

Yeah, I think pain and fatigue, they go hand in glove. It’s very common, people with pain, we get very tired, ‘cos see even when were asleep, you know, it doesn’t mean to say that were not in pain, were just unaware of the pain and like me in the morning, I get up at half five anyway, but I’m normally awake earlier than that anyway because my back sort of, it becomes tight and stiff and it sort of wakes me up and says ‘Time to move now [name].

So, even if I wasn’t working I’d be still, I always wake up early anyway. But that means that I get up, do my stuff, go to work, come home, but the thing is I get very tired as well, you know. Like most people probably get up at six, seven o’clock, go to work and come home and that’s it and they might want to go out.

But pain does make you feel very tired, it makes, does give you a lot of fatigue and the one thing you try and avoid doing, in the early days what I used to do is have a nap in the afternoon. No, you can’t do that. When you have a nap in the afternoon, it disrupts your sleep pattern so it’s like a viscous circle.

You… ‘cos you have that nap in the afternoon, it disrupts your sleep pattern and you don’t want to sleep at night. So, even if you are tired in the afternoon, try and do something, keep yourself awake, keep active then, when you do go to bed at night, you, you try and get a fuller night’s sleep. Sometimes as lot of people think ‘Oh, I haven’t got, I don’t get me eight hours sleep’ well, they tell me, a lot of people don’t need eight hours sleep anyway.

Well, yes it’s not exactly, weve had a bit of a family hiccup just lately, which I can’t really go into, but it’s the kind of thing that psychologically will affect us all quite a lot and I think your tolerance to pain. If theres something else going on in your life, your tolerance to pain is just the same as if you’re tired, your tolerance level drops.

So it just shows you how much mind and body are inter-related really, because, if you’re having a good day, you can cope with much more than a bad day. So I think, you know, theres definitely, your mind does play a part in it as well. But, you know, if it’s just if each day comes along and it’s what I expected it normally to be, you know, you just get on with it.

Yes. What I was thinking about particularly was that when you’ve got pain, that pain isn’t existing in isolation, it exists alongside all sorts of other things going on in the family and for me the most important one I think was round about the time while I was in America.

My wife was diagnosed, my first wife was diagnosed with breast cancer. And I came back from the States feeling as fit and as well as I had done for a long time and I was really feeling my pain was under control. But I came back to my wife, who was deteriorating very rapidly, shed been diagnosed round about February and by May she was in a very bad way.

She wasn’t really responding to chemotherapy and emotionally she was at a very low ebb because she was busy, shed been a busy teacher and mum and doing various things. And she was absolutely, I think, terrified at the cancer. One of the things that happened is that emotionally I think she froze. We had quite a difficult time getting her to get any signs of being positive and this was extremely difficult for me.

At the same time the burden of looking after her fell on to me, running the house, doing the shopping. And these were things that I had not done for a long, long time and I found it extremely difficult. And of course the pain levels absolutely shot up. I was really struggling. And then, at the end of July, she went into a decline, was taken into hospital and by the end of August shed died. And this was absolutely devastating. It was one of those things where you, you come to a sudden full stop. And it’s where do you go from here?

One of the things I very soon learned that I needed to do was to get back to basics and I went back to starting all the activities that I used to do when I first went on the Pain Management Course. I got back, because I’d neglected them, to doing the basic physiotherapy exercises. I went back to going through the basics of learning relaxation techniques. I learned’ I went back to targeting. You know, these were the things that I held on to. And I think these helped me to get through that period.

I think, yeah, I think if you’re worked up in yourself the pain can be far worse. I mentioned earlier about you know distraction techniques and I think that’s really important. I think, when you’re stressed, you’re naturally, your pain comes more into your mind and when you’re relaxed tends to sort of trickle away for a bit, which is really quite nice.

And I think, when you’re angry, your pain comes up more and my anger comes from my frustration of not being able to do things or if I get stuck or my ankle gives way and then my pain is there. You know, it stares you right in the face because that’s… and you can’t get away from it and I think that’s when it hits you more. But certainly stress levels yes, it’s there quite a bit and…
How do you deal with that?

Not very well sometimes, you sometimes just have to let time take it’s course and things ease away. But again if I, it depends, I mean, if you’re by yourself then some of the ways I mentioned earlier, you know, just about, ‘Right, that’s it, it’s come, I’ve got to stop what I’m doing

I’ll go off in the car and I’ll go and do something else and get away from the issue, you know, and if that means going up by the river or something like that, great. I’ll go and sit by the railway line and put my anorak on or something like that, you know, and get away from it. But that’s quite useful. If it’s with your family, it’s a bit more difficult because you can’t suddenly whiz off, you know.

If I’m looking after my son, because my wifes at work, something like that, you can’t whiz off, you have to stick in there. And again, you try and let time whiz it through. Sometimes that doesn’t work and I’m probably not a very good playmate then but that’s it, theres not a lot you can do about that it’s just something that’s there. I defy anybody who says they’d cope with their stress completely with pain, I don’t believe them.