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Transcript – What is Self-Management?

‘You have to want to live again.’ That’s the key to man­ag­ing pain, accord­ing to Diane. It can be a long, wind­ing road, but many peo­ple liv­ing with pain have learned strate­gies that help them to get the most out of life along­side their con­di­tion, rather than being dom­i­nat­ed by it.

Top tip: make pac­ing more appeal­ing. Start by choos­ing an activ­i­ty you find reward­ing and enjoy­able. Then, build up slow­ly and steadi­ly to doing more.

Find out more: Pain Concern’s book­let A Guide to Man­ag­ing Pain is a great place to start learn­ing about the things you can do to man­age your pain, includ­ing pac­ing and deal­ing with flare-ups.


Chris­tine Hamil­ton: I’m in pain 24/7, so 24 hours a day, sev­en days a week.

Dianne Con­nor: It’s hell­ish pain at times, I mean it’s just a monster.

Helen Rice: I was in a lot of pain, try­ing to hold on to the straps, or doing all the things that you have to do as a commuter.

Hamil­ton: It nev­er goes away, it does flare up depend­ing what I’m doing, what activ­i­ty I’m doing. If I push myself too much, then it flares up more.

Rice: I was strug­gling and it was becom­ing very stress­ful, because if I couldn’t get a seat then I was going to be sore for the rest of the day, and extreme­ly tired.

Con­nor: I call it the drag­on, because it undu­lates and does so many things and breathes fire.

Rice: I actu­al­ly went into hos­pi­tal for three weeks and dur­ing that time I learnt a lot about the pain cycle and self man­age­ment tech­niques. And, real­ly, I sup­pose I had the rev­e­la­tion that there was not going to be a pill that would fix this and there was not going to be an oper­a­tion that would fix this and that basi­cal­ly this is the body that I have, this is how it will always be, but there are things that I can do to help man­age that body to make it as good as it pos­si­bly can be.

Hamil­ton: It means that I can’t do the things that I used to be able to do, but I’ve accept­ed that now, with the train­ing that I’ve been giv­en. I was very for­tu­nate to be lucky enough to be accept­ed onto the Glas­gow pain man­age­ment pro­gramme. And on that pro­gramme – it was a ten-week, half a day a week ses­sion and we were taught dif­fer­ent tools and tech­niques to help to self man­age pain ourselves.

The kind of things were under­stand­ing our val­ues, what’s impor­tant to us, set­ting some goals and then from there set­ting an action plan which would help me become more mobile, more flex­i­ble and achieve my goals.

And then after that they gave us a toolk­it of dif­fer­ent tools to pick on, from things like hot words, using hot words and what they mean to us. ‘So I can’t do this’, ‘I won’t do that’, ‘I’m going to be sore if I try this’. To accep­tance, so accep­tance com­mit­ment ther­a­py, which was a tool that they taught us which I hadn’t come across before, which is around accept­ing what you can and can’t do, accept­ing that I’m going to be in pain for the rest of my life now.

Con­nor: I don’t think you real­ly move on until you accept your pain. Once I was moved on to the pain clin­ic I got a psy­chol­o­gist. She said ‘there isn’t one day you wak­en up and there’s a great big ban­ner with bal­loons that says “accep­tance”’. She says ‘you don’t just sud­den­ly wak­en up and go, “I’ve accept­ed what I’ve got, I’ve accept­ed my pain”’. She says ‘it’s a long jour­ney that you’re on and you’ll slip on and off the path, the road will twist on your jour­ney. But in the end’, she says, ‘it’s just a grad­ual thing’. And that’s how it hap­pened. I can’t tell you the day I accept­ed I had CRPS and I had chron­ic pain, it was just a slow progression.

Rice: I had very sim­ple phys­io­ther­a­py to start with. I was exhaust­ed, I couldn’t do very much at all, but once I left hos­pi­tal I had a fan­tas­tic com­mu­ni­ty phys­io­ther­a­pist who vis­it­ed me at home so that I didn’t have to get to appoint­ments, which had been a big prob­lem in the past. And we just built it up from there and even­tu­al­ly I was well enough to go swim­ming, so I swam. I remem­ber going into the swim­ming pool, hadn’t swum for many, many years, I got in the water and I swam one length and then I got out.

Hamil­ton: If you change your lan­guage to say, ‘I can’t do 10k, but I can do yoga’, so it’s dif­fer­ent ways of doing things. ‘I can’t pick this up, but if I move dif­fer­ent­ly I might be able to pick that up.’ So it’s a kind of pos­i­tiv­i­ty around your neg­a­tive thoughts and notic­ing how often you do that, because they drag you down. So for me prob­a­bly 80 per cent of the tools that I learnt were around the mind and using the mind much more effectively.

Rice: A few days lat­er I did the same, but I swam two lengths. And I said that once I could do forty lengths, which is what I used to do years ago, that would be a sign that it was time to find the next kind of phys­i­cal goal.

Hamil­ton: I think if you don’t have lit­tle goals, you’re kind of aim­less, you don’t have any­thing to achieve for, or get out of your bed for in the morn­ing when you are sore. So lit­tle things, lit­tle tiny goals, like I’m going on hol­i­day this year. So to be able to be plan­ning for next year, or for in six months, or even tomor­row is a huge life change for me, because I couldn’t plan any day before. I didn’t know how well I was going to be each day. So for me I know I can com­mit to going to Lon­don in Sep­tem­ber and know I can go on hol­i­day in June, so I know now that I can do that. So that’s com­mit­ment for me and aim­ing for things and putting in place dif­fer­ent tech­niques to get me there.

Con­nor: Some­body told me this ear­ly on, that some­body with chron­ic pain, you only have so many spoons in a day and every day how many spoons you have to use is dif­fer­ent and so instead of say­ing ‘I’m hav­ing a bad day’ or what­ev­er, we talk about how many spoons I’ve got. So I’ll say to my hus­band Paul, ‘I’ve not got many spoons today’ or ‘I feel I’ve got a lot of spoons today’.

So that helped me learn, because I did the typ­i­cal things. When I had a good day I would just rush about and try and do things and then I’d be bed­ded and I’d be ill for days or weeks after. So I then learned how many spoons I had in a day and I learned that I could actu­al­ly start to do things.

I think they use it as pac­ing as well, but I don’t like that word, because the hos­pi­tal, every­body was ram­ming that down my throat, pac­ing, pac­ing, pac­ing. So in our house it’s called ‘the P word’. Because I don’t like that word any­more because it drove me round the twist because I couldn’t learn to pace in the begin­ning, you know, I would try and do some­thing with my hand and the pain would just be… you know, so I found how many spoons I had works.

So that was how I start­ed real­is­ing that in amongst exhaus­tion, the tired­ness, the pain, that if you learn just to do a lit­tle bit, then a lit­tle bit crept on to doing a lit­tle bit more, a lit­tle bit more.

Rice: The tac­tic of pac­ing is one of the hard­est things that you’ll ever try and learn to do. And you almost have to keep relearn­ing it, or I do any­way, because your body and mind, it doesn’t come nat­u­ral­ly, I think, to a lot of peo­ple. The temp­ta­tion is always to do a bit more, and then when you have a flare up and you have a bad day it can be very disheartening.

Hamil­ton: Pac­ing is real­ly dif­fi­cult for me. It was some­thing that I hadn’t known any­thing about before, I hadn’t come across it before, because I was always a hun­dred miles an hour at every­thing, so car at full throt­tle is the way I explain it. And obvi­ous­ly if you do that with a car bits fall off and that’s me, that’s me in a nut­shell. I know now that I’ve got to change gears for dif­fer­ent sit­u­a­tions. I know now that I’ve got to sit qui­et­ly some­times and gath­er my thoughts and re-cen­tre myself and I use my mind­ful­ness for that and yoga for that.

Rice: One of the things they explained to me in the hos­pi­tal, we sort of mapped it out, was when you live like that, in the boom-bust cycle, you might start off with hav­ing a good day and a bad day. And over the course of time what you end up with is a good day and then six bad days and the recov­ery time seems to take longer and longer.

Hamil­ton: For me pac­ing means if I’m in the office, I don’t wear heels, if I’m out of the office I wear high heels. If I’m in the office and I’m sit­ting at the com­put­er a lot, we’ve got intel­li­gent light­ing so it’ll go off every half hour, so I move. And I don’t just move a wee bit, I’ll go up to the dif­fer­ent floor to go to the toi­let. So there’s all dif­fer­ent things about pac­ing in there.

It’s about know­ing your lim­its, and not push­ing your­self so you have that, you’re fine one day, lying flat on your back the next day, you’re fine the next day then you… So it’s about find­ing that bal­ance, what we call ‘the base­line’. And then from the base­line it’s like push­ing on each, not push­ing on, but mov­ing for­ward each day a lit­tle bit more. So I now can do the gym, I can now do, you know, two and a half k walk, but I can’t do a 10k run.

Rice: It is a con­tin­u­al bat­tle to remind myself, you can’t do all the things. Pri­ori­tise, I rule my life by an online cal­en­dar, where I colour code rest time, as well as activ­i­ty time and try and stick very close­ly to that. It’s not always pos­si­ble, but wher­ev­er possible.

Hamil­ton: Pac­ing is still dif­fi­cult for me, it’s some­thing even today, it’s a mind thing for me now, I need to change my mind­set, because my mind is still at a thou­sand miles an hour, but my body is not any­more. So I’ve learnt how to lis­ten to my body, and man­age that. But my mind is still a thou­sand miles an hour. So for me, that’s where my mind­ful­ness comes in and my yoga, I do yoga every morn­ing and at class­es at night. So for me that’s when I get that time out. The stop­ping and then I realise. So some­times I have to catch myself, that I know I’m push­ing too far, or too hard and I just stop. I can just let things go now.

That’s some­thing I couldn’t do before, was let things go. So, for exam­ple, when I was doing the gar­den before I would blitz it in an hour and a half. I can do a bit and go off and have a cup of tea and then do anoth­er bit and then come back or maybe anoth­er day and do some­thing else, because I still enjoy doing it, but I can’t do it as fast. And I’m not frus­trat­ed any­more, that I can’t do it that quickly.


Con­trib­u­tors:

  • Chris­tine Hamilton
  • Dianne Con­nor
  • Helen Rice

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