I’m on two anti-inflamatories a day, I’m on one capsule for my stomach, I’m on one tablet for, I’ve got a jumpy leg that seems to go for a wee holiday itself, it doesn’t want to take the rest of you with it. So you go to end up I had to buy a weekly box so that I could sit on a Sunday or a Saturday and fill this box up with tablets I was supposed to take every day.

So it means, I do it on a Saturday, so I start on the Sunday, in 4 compartments, so you can actually, when you walk in you say ‘I’ve took my tablets its alright.

Because pain does tend to do something with your memory as well, and its not only the pain, I think its everything else that goes with it, so a weekly box was ideal for me because I’ve done it once on a Saturday and I don’t have to worry about taking my tablets all week, because I knew where they were, I went I got them, if I hadn’t taken them I would look in the box and say ‘I’ve forgot my tablets’, but its very seldom you forget your tablets because sometimes you’re sitting there going, ‘I’ve got another 2 hours to go before I can take my painkillers’, do you know what I mean?

And sometimes that can be hard, or you can take an extra two, an extra two painkillers but even at that it doesn’t help very much either, so when you’re in a bad flare-up you can have a mope about the house and stay out everybody’s road and cry your heart out and you get over it, its as simple as that, you do, you eventually say to yourself it’s a bad day, it’ll not kill me so I’m alright.

Well the main drug that I’ve had over the years has been dihydrocodeine and I take two of those four times a day. I used to just take them when I needed them, but my GP advised me because the way the pain is now, to take them regularly so that it’s in your system all the time.

Because once you stop taking some tablets and then you go, about 12 hours later, to take, because the pain’s got bad, and you go to take a couple, but he said you’ve sort of broken that circle and it takes longer to get out of it. So he uses those as basically a background kind of drug and I also take the amitriptyline, partly to you know, elevate your mood so that you can have more tolerance of pain and also it helps the pain killers to help more properly.

I think it’s used in people with shingles who’ve got after shingles pain and that sort of stuff. And I’m given these Diconal tablets which I only take every now and again, or if I have a very… three or four days, I can take them for those three or four days, three times a day but, obviously, as soon as you’re better, you go back to the other ones again.

But my GP has really just been terrific about them, you know, hes not, and I’ve been on the same drugs, the same dose for a long, long time, so, you know, it’s, I feel it’s well controlled really, most of the time.

Can you tell me what it’s like to use medication? (paracetamol, dihydrocodeine, co-proxomol, Temgesic)

The medication I’ve been given varies from mild medication, like paracetamol, to quite strong medication, and it’s difficult for me to gauge. I know I have to, I know I should take it before it gets too, my pain gets too bad, because then nothing works and that’s difficult, to self-medicate.

Also, I don’t want to take too much. There was a time when I would just wake up in the morning and take my pain medication and it was just a matter of, you know, of course, cup of coffee, breakfast, pain medication. I stopped doing that because I found that, you know, I was having to take more and more and more and more and also it was difficult to, because the pain medication has side effects, side effects apart from constipation, stomach irritation, nausea and confusion and slight euphoria.

Unfortunately the euphoria only lasts about a half an hour or so and then after that it’s just, theres a dullness and that dullness, for me, dulls everything. So it dulls my sense of humour, you know, so I just feel dull, which is why I find television is a you know, a great choice of entertainment because it’s dull.

So I’m having to self-medicate, so every time I have to take something I think, I have to think to myself ‘How much do I take? Should I take this? Do I want to be taking this? How’s it gonna affect the rest of my day?’ and things like that, ‘What am I doing for the rest of the day?’

How did you come through that flare-up?

Well my priority obviously is to have sufficient and appropriate pain medication to try and hit the pain on the head so at least I get intervals of respite even if they are not continuous, and hopefully enough that I can sleep some of the time.

Because sleep is the first thing that goes out of the window and nights become really, really difficult and of course also if you’re taking heavy duty pain medication you tend to become rather dozy anyway so you may sleep a bit during the day and then you can’t sleep at night anyway because you’ve slept during the day.

How do I get through it? I don’t know. I really don’t know. I just endure it. I distract myself as far as I can by reading if I feel able to. I always make myself get up and get dress’ have a shower and get dressed because I feel that if I don’t do that I’m just going to slip off the shelf basically.

So I will pace myself so that I will perhaps get up, have a cup of tea, go and lie down a bit, read the paper, perhaps get up and have some breakfast if I feel I’m able to eat, lie down again, perhaps at an hour a time. When I feel strong enough I will struggle to go and have a shower and get dressed in some way so I feel like I’m sort of part of the human race.

I feel if I don’t do that I’m, I don’t know in a strange way I feel like I’ve let myself down. I feel that you’ve got to struggle to put on an appearance I suppose that is what it boils down to. You’ve got your clothes on, you’ve brushed your hair or whatever.

But it is often very, is a huge struggle just to have a shower, I mean it’s a question really of lying down, waiting for the pain medication to kick in, if it allows me to sort of feel I can move around at all within the house, I will do so or I’ll go and walk in the garden if I feel I’m up to it.

On the really bad days, I just live from one dose of medication to the next and I discipline myself not to abuse the medication and to have them at the right intervals, so that I don’t end up with overdose problems or sort of side effects which makes the situation worse.

You said earlier that you don’t take medication now, but in the past you’ve had experience of medication?

Yes, I took paracetamols, ibuprofen, anti-inflamatories, and then I was prescribed co-proxamol, which are pretty good, they’re a bit sledge hammery, they tend to knock you out a bit and also all these things make you constipated.

So, you know, you get, you take one thing to relieve one thing and you end up with something else and after nearly ten years I came to realise, last year, I did a little test with myself, to see if I could manage without them, because I thought ‘Well this is ridiculous, I don’t think they’re doing very much and I stopped taking them and I will only take them occasionally, if I really can’t sleep, if I’m having a very bad night.

In fact it’s my husband that suggests I take them so that he can get some sleep. But I try not to take them. I can’t see a lot of point. I can’t see that I gain much at all, apart from feeling very fuzzy in the head and I don’t like that feeling.

First of all as for using medication generally, I don’t, I’m not, I don’t like taking pills. I’m also forgetful. I’m not very good at the routine of, I’m not good at any routine but I’m not good at the routine of taking pills on a daily basis.

Second of all I seem to have a very sensitive stomach so I personally, my body doesn’t like pills and so anything that sort of, anything with any acid in it makes me feel sick. Aspirin make me feel really quite ill. Paracetamols are not much better. All the things, I just don’t seem to respond to them and then the third thing was they don’t get to the deep pain and not ineffectual. If they do get to the point where they are effective as a painkiller, I’m asleep. So for those, those reasons you know, I stay clear of medication.

Going way back I can’t remember obviously the names of them but I was on about 28 different types of pills and drugs, they gave me them after my main operation at the back of the neck, it was all to do with pain and swelling, side effects, to take this pill to knock the side effects for that, and a pill for the side effects of that.

But I was really getting, I can remember I used to get up about 8 o’clock in the morning and come down the stairs and the wife would make my coffee, take my pills, take me back to bed at 8.10, the pills just floored me, and that was me till about 11am back 11am come down till 12 take my pills again and back up, I just wasn’t having any life because I was taking all these sort of pills and drugs.

I actually got a hold of my own GP and told him that I wasn’t too happy about the amount of pills, he said ‘Well it was actually the surgeon that put you on it, because they had worked on your spinal column’, I had to take certain drugs for it, he says, ‘we are actually hoping to get you off them, but you’ve got to be weaned off them, you can’t just stop them’, so that took a period of about 6 months I think because I was shoving to come off them, I didn’t have any life, the furthest I got was out the back door, that was with my family holding on to me, just to get a bit of fresh air, I just couldn’t do anything with them.

So I basically took, I was cut down to eight pain killers a day, and one stomach pill because of the acid I think I had to take that because of all the pills and the drugs over the years. I slowly got that I was well even the pain killers aren’t helping me too much, so I’ll just take six instead of eight, and then it was still not so I will just take the four, so I’ve actually cut it down over the years, I’m down to two pain killers I take at night when I go to bed hoping that they will just ease me to get to sleep.

I take my stomach pill in the morning and basically just try and get on with life now, and with going to the pain meeting, the group, my breathing helps me again so I might breath instead of taking two pills. Or instead of going into the drawer and taking another pill I listen to the tape or I phone somebody up, and that’s doing me every bit of good, probably doing my body better and I think I’m getting the same result.

I’ve actually tried cutting the pills out altogether, but I think I just need that two, and I don’t mind that so much. There was a long spell that I would take two through the day when the spasms were coming and would end up taking maybe 4 or 6 one day, two days running, but now I just do a wee bit of breathing and forget the pills, and I’m getting through the day and through life, probably even better, because its not knocking hell out my stomach, mainly.

I think my eating habits have all come back to where they used to be, because you weren’t eating, you were only picking, I’ve got a bit of a social life now as well, I don’t smoke now but I can have a drink with my family, I wasn’t doing that for years because I was on the pills, I’ve got a bit of normality back in my life, and it’s definitely with kicking a lot of the pills, but now I’ve got the wee bit of help with my tool box, with the breathing it’s definitely a step in the right direction for me.

I hate the idea that I’m on medication. It’s actually making things worse and I actually didn’t think I needed this one particular medication and when I was at the pain clinic, you know, I made it very clear that I wanted to try and come off some of the medication, wean myself off and being very positive for that I perceived that I was going to be on medication for a limited period of time because it was necessary, but there would be a time when I no longer needed it. And when I started to try and come off, one medication that gives me the, I think gives me pain in my joints and has made me put on a lot of weight.

Which medication is that?

That is gabapentin (Neurontin). It’s an antiepileptic drug but it’s good for nerve based pain. And I’m on the highest dose of that, that your, the GPs are allowed to prescribe in this country and I tried and all I did was drop one tablet a day and by the end of three weeks just dropping one tablet a day and that was for 2 weeks and then third week I dropped down, I dropped two out of the six tablets a day and it was just so uncomfortable and so exhausting because you were dealing with the pain, you know, and the feelings so that was tough because that’s the one I really want to try and come off of.

But my GP, the one that I moved to, has been very good and I went back and was fairly distressed because I then tried, when I couldn’t come off gabapentin when I went back and we said ‘Well let’s try to take you off of amitriptyline, let’s wean you down off that’ and exactly the same thing happened.

I went down, I went from 50 down to 40 and that was okay and then I went down to 30 it was just the jiggling, and the tingling, the numbness all down the left side, just all you know got to a level again it was so tiring coping with that and trying to maintain a normal momentum.

But she was a bit more upbeat and she said ‘Well look just get back up to 40. You were fine at 40. Positive fact is you’ve reduced it by 10, one fifth. And I said ‘I’ve already been there. I’ve done that. You know I’ve tried to do the ‘Whoa I’ve came off of it’ ‘ and I said ‘But it’s hard when you’re on still such a high dose two years after surgery and you’re thinking I don’t want to be on this for the rest of my life.

The first twelve weeks I had sickness and all the things that go with it, which was fantastic, but pelvic pain, lower back pain, I’d had to come off of all my medication. So there I was back to, you know, agony basically. In the sense that I’m in pain every day, but it was different control of pain, taking medication to help pain, but didn’t actually take the pain away but made you able to live. So I was in pain, so I was bedridden.

From twelve weeks I was able to start taking co-codamol and amitriptyline again, which was absolutely scary as anything because all I was worried about was this baby I was having. And then I was in and out of hospital from seventeen and a half weeks right through to the birth for weeks at a time and the rest of the time I was bedridden at my parents’ house on the basis that I was bedridden at my parents house otherwise I was in hospital, that was the compromise. And then I gave birth to my daughter, happened naturally, great, epidural though, I was a wuss, I had my daughter, which was fantastic.

But yeah, you know, I then went in for the second lot of surgery and that was worse than the first, a lot worse than the first lot. The after pain from that was awful because obviously they’d been playing with nerves and I just, I really thought I was going to die, really thought I was going to die after that.

And luckily a friend of mine who’s a nurse, two nurses actually came in, and saw me and I just didn’t think that I would ever see my family again. I was, I felt that bad and they came in and it was something so simple.

I’d been on morphine before I had this done, I’d had morphine after the surgery, but once I was off of the syringe driver, they’d stopped it and I suppose I had cold turkey. You know, I needed the morphine and nobody had picked this up and obviously I hadn’t picked it up, you know, they were just giving me handfuls of tablets and you take them and, and luckily, you know, my friends had come in and something as, you know, as simple as that, just one drug that wasn’t being given was what was wrong.

Now, I just suffered and took, now what did I take in the way of painkillers?

I think they were giving me Distalgesics already and at some point, about a year or so later, a GP said you know ‘How many are you taking at a time and advised me to take three, he said it’s a matter of getting the dosage right. So pretty well, since then, I’ve been on an almost routine dose of eight a day, which is the maximum. I never, ever take more than that.

Occasionally, when it’s been very bad, I will have a slug of scotch or brandy to potentiate it. Now I know this is evil, but it’s better I think, by and large, rather than doubling up the dose yet again.