Unfortunately nothing can be done about my condition, it’s chronic scarring around the spinal membranes and there is no intervention. All that can be done is to manage the condition with drugs if necessary, opioid drugs, and really to be as competent in pain management strategies as I can be in terms of pacing myself, having realistic goals, exercising where I can which is very difficult because it’s the same story, any activity tends to cause me to go into a flare-up, where I become sort of virtually bed-bound and have hugely increased amounts of pain.

So the whole time I have to learn to walk effectively a tight-rope to manage the condition, and yet to be as normal as possible and that can be really difficult and you often fear that you’re failing because you perhaps want to do something, you need to do something and you push yourself and then you find that you have done too much. By which point it is too late to retrieve the situation. You often don’t actually get the bad effects of overdoing it for even sort of 24 hours later by which time it is over and gone. You can’t go back and you just have to live with the consequences.

No, in the beginning I could almost predict when I was going to have a bad day, to a degree of, if I’d go out, if I’d do too much, if I’d do some cleaning, use the hoover, if I go shopping, I can almost predict that the next day I would be bad. And, certainly for the first two or three years, I was actually fairly accurate with that.

But, as times gone on, I found it becoming less and less predictable. So yes, I do tend to have bad days after I’ve done too much, but sometimes I don’t and sometimes I have bad days for virtually no reason possible. And that’s actually been the most frustrating part, is the fact that I can have a bad day and think ‘I’ve done nothing, why am I worse than I was before?’

But I don’t know, it’s kind of something you learn to live with and I think that’s part of the acceptance of it, is that you learn, you know that you have this for life and you have to learn to manage it rather than get rid of it. And it, and it is all about managing it rather than the pain managing you and I think that, certainly in the early days, it managed me. I mean sometimes it still does, when you’re really bad and can’t walk, but sometimes it’s not, you know, I am learning to get the better of it sometimes now, but without overdoing it because I do know that I’m still very good at overdoing it sometimes.

Well it happened the other day there. I just didn’t move. I hardly moved. I just stayed home and sort of molly coddled myself, for want of a better description.

Before, in the early stages, I didn’t do that so much because I kept on thinking ‘Well, if you do this, you know, you’re going to be like this for the rest of your life. You’re not going to be able to do anything and everyone will think you are useless and so on and so forth but after you’ve experienced a few times, like there have been times in the last few years like as late as last year when I couldn’t move. I couldn’t walk. I was worried about I was in so much pain.

I’d walked up a hill to get to a friend’s car and it just knocked my SI and hip out and I couldn’t move and I was worried about not being able to get to the bathroom. I was worried about soiling my own bed and lying in it because I couldn’t move. That didn’t happen I am delighted to say, but the panic of something like that is just, it’s frightening, so in the few years, the last few years I’ve gone through a few occasions like that and when I have it’s always made me resolve, on the days when I can move, my goodness I’m going to move as much as I can.

Now that’s sometimes not always smart because sometimes you do it too much but you know you just learn, I’ve learned to pace myself but it’s taken a long time and I’m amazed how, I’m astonished at how long it’s taken me to learn this but I suppose it’s a conflict of emotions going on all the time, you know.

Okay. On my worst days the thing that gets me through is thinking that tomorrow is another day. So that’s the way I would start off by dealing with the pain that I’m in. The kind of pain is actually a fierce burning sort of a pain on a particularly bad day. It’s something that I can’t possibly block out of my conscious. It’s at the forefront. It’s the first thing I think about even when I’m trying to think about something else;

So on those days I guess it is pretty pointless trying to do anything else that will be constructive because it’s going to limit my ability and I’ll probably have to do the same task again tomorrow or the next day or whenever I’m feeling better. So I then turn my attention to trying to limit the pain that I’m in on that particular occasion. So I will do really simple strategies like keeping warm. I’ll often try to have a bath, I’ll use my hot water bottles. I will do everything I possibly can to make my life a bit more comfortable and happy;

If I want some chocolate, I’ll have some chocolate that day because I’ve just got to keep my morale up and I have to try and distract my conscious from the way its feeling because if I let myself think about it too much that is self defeating. So I will often call someone just to let them know that I’m having a bad day, so if I’m not in contact they’ll understand that that’s why because I think it’s important to communicate with the people that are central to your day-to-day life. I mean especially with work. I’ve got to call work to say that I’m not going in. So I’ll do that. I’ll do that the first, the second thing that I’ll do after telling myself that it’s only one day and then I will concentrate on looking after myself.

Okay flare-ups, were all going to get them. Is it realistic that people with pain, whether you’ve been on a super-dooper Pain Management Programme, or a super-dooper self-management programme, you’re never going to get a flare-up ever again in your life? No, false, incorrect.

We are over-achievers, we will overdo things and we will get flare-ups and it’s how, part of self-managing part of pain management, is how you deal with that flare-up. Most people, when they go to flare-up stage, the first thing they do is panic. ‘Oh my God, what’ve I done now?’ But the first, you try, what you have to do is stay relaxed, but you need a plan, you need a flare-up plan.

When I get a flare-up, right, I am going to be dead honest there with you. Do I panic? For a split second yes, I do. I go ‘Oh, what’ve I done?’ Then I have to talk to myself and say ‘Well hang on a minute here son, it’s, okay you’ve done something ‘ere, it ain’t quite right, right, easy does it, easy does it, relax. What I do, personally, is I put ice on my pack, wrap it round, I’ve got little gel packs, wrap around in a tea towel, then put them on me back, lay on the floor with me knees bent and just lay there for five or ten minutes, just to snap, you know deal with the inflammation, get the inflammation down.

What I do though, is I do some stretching, carry on stretching. I reduce exercises by about half. So let’s say I’m doing strengthening exercises, I’m up, I do, say I might do twenty, I’ll probably reduce it by ten, but then I’ll increase it one a day after the flare-up’s starting to ease off.

Flare-ups normally, for me, oh it is, I know it sounds like I’m being big headed again, but my flare-ups only last for about an hour or so and then they go, you know I just, I just get on with things. The reason why they’re so quick now is because I’m fitter. They say that the fitter you are, the less time you’ll need to recover, the less fit you are, the chances are your flare-up will stay on for longer, it may last for a few days.

The times when my pain flares-up beyond its usual background permanent level. At two sorts I mean they, it might be because for instance I’ve been shopping and I’ve lifted groceries and I’ve driven to the shop and back and I’m tired and I need to lie down and recover from that but I will then be able to get up in say an hours time and you know, start life again as it were and do something else.

So that’s a sort of holding operation to lie down, but the times when I have a really bad flare-up still fill me with dread every time it happens. Although it’s happens so many times, each time is just as bad as the first time. It’s the increased pain for a start and it’s a tension, the stress that goes with that. It’s the depression because in my case I become much more immobile, I have to perhaps spend all day lying down rather than at intervals during the day. You know, times when I actually have to force myself to get up to go to the loo is as much as I can bear to do that.

And you become a sort of a little island by yourself, I think pain is very, very isolating and when it’s really bad, I don’t know if other people do this, I just withdraw into myself. I don’t want to talk or communicate, I certainly don’t want visitors.

I can manage with my husband around because he is so sensitive and acutely sort of tuned in to me but anybody else I find very stressful to have around if I’m in that state. And now that I know what is the pattern is likely to be, I know that I’m just going to have to endure what comes and put up with it.

The fear that comes with that is not knowing how long it’s going to last, how bad it’s going to get and is it ever going to stop. Now experience tells me it always has stopped, but that can be anything between a couple of days or six months and not knowing you know, what you’re dealing with absolutely sort of saps your will basically to go on.

I suppose I’m lucky because really (a) I’m quite a loner by nature so it doesn’t actually worry me being by myself for a lot of the time, although anybody can have too much of their own company. And over the years I’ve learnt to accommodate it anyway. Secondly I love reading. Thirdly I’m a Radio 4 addict so if I feel not even well enough to be able to concentrate on holding a book and thinking about what I’m reading I can always listen to the radio.

Yeah and then I think what, then we went through what do we do if we have bad pain. You know make up your first aid scenario and I use that now. I used it last night and on Saturday night. Which is the pain was bad couldn’t sleep, it was going into my other side, and I thought why am I just sitting here?

I know what I should do and know I should get up, take the medication, get my heat on, you know sit and watch something on the telly, relax, don’t get uptight and react, just accept it and accept that just relaxing is as good as sleeping if that’s all you can get.

So yeah, I think the Pain Management Clinic for me was the right thing at the right, no not at the right time, I could have done this long before then but maybe with my personality, maybe I had to go that far before I would have accepted that I needed to go.

Oh well, first and foremost I think if you’re having a flare-up you draw on the experiences of flare-ups in the past and you do all the things that you know will help you, like pacing yourself and relaxation or listen to music or any form of distraction at all that you find pleasurable, looking at grandchildren, photographs of grandchildren, anything like that and it depends on how bad the flare-up is.

The first three or four days can be crucial and what you do and how you’re going to react and how long this flare-up could last, and I have always thought as long as I pace but keep myself mobile, because mobility can be very easily lost and it can take an awful lot of hard work and effort to get it back again, so I would say that keeping mobile but not strenuously, you know really cosseting yourself to a certain degree but not to a degree where you’re just going to lie in bed or anything like that, I don’t think that’s a good way of coping.