| .
This thesis was
added Chapter One Appendix One . . .
|
The Presenting Symptoms Associated With Arachnoiditis And The Experience Of Living With Them In Everyday Life A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing at Massey University by Christine Hopkins - 1998 Chapter Seven: THuman and Environmental Fields: the experience of living with arachnoiditis.IntroductionThe previous chapter discussed symptoms, or manifestations of patternings, relating to particular systems or organs, and to the unitary whole. This chapter presents descriptions of the experiences that make up the overall experience of life with arachnoiditis. These patternings reflect the integrality of each participant’s unique human-environmental field, in which the individual human experience is inseparable from the environment in which it occurs. Mobility difficulties Described as the quality of being mobile (Tasman Dictionary, 1985), difficulties with mobility reflect as a manifestation of the human-environmental fields, arising from previously described symptoms which affect the ability of the person to move readily in their environment. These difficulties also reflect the ways in which the environment restricts individual’s ability to make full use of the mobility they do have. Because of pain, numbness, muscle weakness and fatigue, all participants had varying degrees of difficulty when it came to living a life involving any degree of activity. Problems had two aspects. They altered and restricted the way a person did things for themselves or they forced participants into unwanted dependency on others. Nine participants described lack of mobility or freedom to move easily in their world as a major problem of their life with the symptoms of arachnoiditis. Two other participants did not describe lack of mobility as a major problem, but noted some mobility difficulties related to their symptoms. Greg Greg is able to walk without too much trouble, unless his leg gives way. “I mean, the other weekend, I went to the supermarket and all of a sudden my left leg just sort of, for no reason, it sort of felt all funny and had no strength and I was about to collapse.” He finds this very “frustrating.” Jack Jack has no problems with his walking, which he describes as “excellent.” Increasingly, he finds it hard to get to his feet after sitting. These difficulties were described earlier in relation to numbness, which is linked to his mobility difficulties after sitting. He also has problems with keeping still while standing. “I get pain with standing. I’ve got to be moving round.” Jane Jane’s mobility is limited by pain, fatigue and a tendency for her legs to suddenly give way, leading to falls. She used to be an avid gardener and do-it-herselfer, but now does all her gardening on her knees because of her back. Even so, every little digging motion jars. Not one to give up on doing things herself, she recently got stuck on her roof when she climbed up to inspect the guttering, and had to be rescued by a neighbour. She cannot stand for long periods, but nor can she sit in a car, so she finds travelling “absolutely dreadful.” She determinedly went to Auckland for a seminar several months ago. “The whole weekend was sheer hell.” She had to stop every 40 minutes to get out of the car, because sitting was so painfully uncomfortable. As a result of this experience, she has decided that she will not drive that far again. Jane has difficulty getting in and out of the car because of swinging her legs over into position by the pedals but found ACC would not do anything with the seat in her car. She believes she could travel a lot better if she had a decent seat, rather than just a swing cushion. Her brother-in-law, an upholsterer, took the wings off the seat and made it a lot better. “Because if your seat’s like that you can’t get out of it.” Her legs also give her trouble using the clutch, which led to an embarrassing time in town when she could not find the clutch because her feet had suddenly gone numb. Unable to proceed, she was warned by the policeman who came to her aid that she must only use an automatic car or risk losing her license. Once a professional in training, she knows that she couldn’t go back to complete her education in her preferred profession because she could not be on her legs long enough. Instead, she has a job providing home support personal cares, showering clients in their own homes and spacing her day to allow rests between clients. She works with people who have flat bottomed showers and who do not require any lifting. While Jane finds this very fulfilling, it is not what she had in mind in the days of unlimited mobility when she envisaged achieving a professional university degree. Jane had been a keen swimmer, but she now dislikes going in the water because her mobility problems make her feel conspicuous, “You try and swim and everybody’s looking over and things like that. I don’t like swimming in public.” She remembers how difficult life became when she also got a frozen shoulder. “I didn’t realise what it was like, not to be able to use your arms. Oh! It was cruel.” Basic things, like lifting trays and dishes in and out of the oven, are still beyond her strength. Attending activities for her children, such as school interviews and sports events, creates problems. I make myself go. The only thing that I won’t go to is rugby matches, because they’re too long. But most things are pretty short and, if you - the teachers know I have a bad back, so the interviews are sort of - they’ll usually stand up with me. But if they’ve got a long session, well, [husband] is actually more comfortable sitting than me, so he’ll go. Jim Pain and fatigue limit Jim’s mobility. He had experienced being left standing in the shower for long periods of time because family had to go and attend to customers in their business, which was attached to their home, and he could not get out by himself. At various times, he has also been unable to manage getting dressed and undressed because of difficulty with raising his arms. Other days, he is just unable to get up out of bed at all, because his symptoms are so bad. Resident in a small town, he finds it hard when friends suggest they all go out for a meal and elect not to take a car because, although distances are short, he finds the walk too much for him, but doesn’t like to make a fuss. Mary Mary has very little control over her legs and must lift them manually for all but the simplest of flat walking exercise. Numbness affects her joint movement and her mobility. Even though walking is a real problem for her, she persists in doing a small part of one of her children’s paper round once a week just for the exercise and as part of her weight loss programme. Getting in and out of the bath was a real problem and ACC put in a shower for her. Unfortunately, her house has such poor water pressure that washing her hair, a difficult procedure anyway, now takes nearly forty minutes. Her inability to look down to see if her pathway is clear has led to some nasty falls on children’s toys. If she does look down, the pulling effect on her spine results in a complete loss of balance making it “difficult to move at all.” Movement of her back is associated with an extension of the lower back pain to areas higher up the spine. Mick Mick sometimes walks “very, very funny. I flop me leg, more so than the other. I seem to lift it, I think, but when I come back down, I seem to come down a lot heavier.” Before his surgery, his leg had a tendency to give way and still does occasionally and he “goes down” on the leg a bit. He has not had problems with falling in association with this. He does have trouble getting dressed, bending over and putting “me undertrousers on, things like that. I’ve usually got to sit on the bed and then I still can’t at times. I can get them on, but it’s bloody awkward.” because he cannot stand on one leg and bend forward. He has extra cushions on the seat of his couch so he does not have to sit low to the ground. Driving is occasionally a problem and he has to let someone else drive. He has no problems bending over to pick things up, nor on walking up stairs. Exercise does not worsen his symptoms, which are more evident when he relaxes, sits down or lies down at night. Paul Paul considers difficulties “in my mobility” his main problem. His lack of strength below his knees affects both his mobility and his balance and mention has already been made of his inability to move if stood in the middle of the floor without his walking frame. His mobility gradually deteriorated over a period of time, Firstly, he started having to use a walking stick. “I couldn’t sort of get around safely without some support.” He needed to use his lawnmower “as a bit of a walker.” Further deterioration involved a few tumbles and his daughter insisted he get a walking frame. Initially a temporary loan, he now has a permanent one. He can no longer mow the lawn, but can do the edges. Once a regular driver for voluntary support organisations, this all came to a halt after his first major collapse and fall. He is now driving again, although unsure whether he would tackle a long distance drive with the confidence he once had. He has found the increased freedom from driving again has given him “quite a psychological boost really.” Nonetheless, he still sees his decreasing mobility, especially with the change from a stick to a walker, as the main problem of his situation because of the restrictions it has imposed. “My theme song is that I don’t get around much any more.” He no longer goes weekly to the Club where he used to meet a friend. He had earlier attended a gym to try and improve his initial weakness and feels that “six years of it didn’t really do any good” as far as the weakness was concerned. However, he is aware of disuse “atrophy” and the value of keeping as fit as possible to maintain his mobility at as high a level as possible. Even though no-one had encouraged him to continue with any activity, he is considering asking the doctor’s advice about going back there, choosing a time when fewer people would be present. Unfortunately, he faces a further barrier at the gym itself, because some of the equipment most suited to his use is on a mezzanine floor and climbing the stairs presents “a challenge.” Rose Rose tries to do all she can for herself. “I’ll push myself to do what I can, because I don’t like relying on others. That’s the most degrading thing of all.” She has a home help during the week for heavy housework and assistance with shopping, but is likely, during the weekend, to “turn around and vacuum,” which “puts” her in bed. This upsets her husband and family but they have come to realise that “it’s my peace of mind and it’s more important to me to feel useful.” Rose sees immobility as her biggest problem, mainly because of the effect she believes it has had on her family. “The inactivity, the things I can’t do . . . they’ve missed out on so much that I couldn’t do with them. Sports, that sort of thing.” Her children were very accepting of her problems and would ask “If you’re feeling OK, could you take me here?” For some activities, other parents “knew what was wrong [with Rose] and they did take them” She found it hard to attend school parent/teacher interviews and tended to speak to teachers on the phone instead. Rose is unable to sit on the floor in her most comfortable position, with her legs out to the side of her and her weight off her coccyx, because she cannot get down there or get up again. She is able to drive an automatic car but, because of the pain generated when she sits on her coccyx, cannot do so for long periods. When travelling to specialist appointments out of town, she therefore needs to be driven by someone else and spends such trips with “the front seat right down” so she can lie flat. Shortly after this interview, she had a seven hour car trip to a specialist appointment. She was approaching this with mixed feelings. “Pleasure, just to get out of the house for a while. And dread, for the trip, because I know what it’s going to be like.” Time away from home is lengthened by the need to break the travel by having stopovers on the way there and back. For this trip “we’re making it this time, that we’re away for three nights” because the afternoon appointment has caused a difficulty as “there’s too many hours from when you’ve got to get out of the motel until the appointment, and that’s sitting in the car.” Eating out is also a problem because restaurants “take too long” for the meal to arrive and she cannot sit for that period. Rose was a very social person and she’d like “to be able to go out more. You get very lonely.” She is torn between going to do things, like the supermarket shopping “because it’s one time I get out,” and hurrying the experience once there “in case I get bashed” by someone else’s supermarket trolley. Terry Although walking exacerbates the pain in his back, Terry is still able to walk short distances, provided he can take frequent rests. If fences or benches are available, he sits on them. When walking his dogs in the area designated for that purpose, there is nowhere to sit and he must bend down to rest his back. “I can walk for probably 10 minutes.” Terry is aware that the majority of his mobility problems are not an initial physical incapability to actually do the tasks; rather, it is the effect the movement has on him that is the problem. “I can’t even carry the firewood in from the back yard, you know. I can do it, but it’s painful, let alone chop the damn stuff.” The gardens at his house have become neglected and he is distressed at his reliance on others, particularly when those others are people he feels he should be helping, rather than them helping him. I’ve stopped doing that a lot now [gardening]. This week, I’ve felt really bad about it. I don’t know if you noticed when you walked in, it’s a bit weedy out the front and that. But one of them there’s half weeded. My 70 year old mother-in-law came over and did four hours in the garden and I felt terrible about that. Because I can’t get out there and do bloody five minutes. Terry has assumed responsibility for the household management because his wife works. A costing of energy and pain management usage has to be constantly factored in, so he can manage household tasks. He has bought a new vacuum cleaner with a longer handle so he doesn’t need to stoop forward, and a new lighter lawn mower, but they too have not been a total answer. I mean, I could probably mow the front lawn and the back in one day. And then I’m buggered for the rest of the day and I’m sore, really sore, the next day. If I space myself out and do a bit, like, I’ll mow the back lawn, I’ll come in and have a cup of tea, I’ll sit down for half an hour and read something. Then I’ll do something . . . a bit of dusting. Again, I wouldn’t do all those big jobs in one day. Like, I might do the vacuuming on Monday, do the front lawn on Tuesday and do the back lawn on Wednesday. This careful planning has been thrown into disarray since he started his own part-time job, ten hours a week. “Like, I’ve only been doing that for five weeks, but even so, things have slipped.” ACC encouraged him into this job and recognise the difficulties it causes. They have reviewed his needs for home help and “I might get four hours a week.” This would be “a big help.” Terry also described what he believes is a typical walk used by those with arachnoiditis. What we called a broken arse walk. You know? Sort of stooped and stiff legged. And I know that walk because when I’m tired and I’m really stuffed, that’s how I picture I must look like when I’m walking, because I tend not to swing the hips, or I tend to bunch up. Tom Tom’s mobility has changed markedly over time. Initially, motion increased his pain, “I was getting a great deal of pain. I couldn’t go [one block] the pain was just so bad.” Numbness, and “everything” giving way, led to falls which he initially attributed to his own clumsiness in using his crutches. A specialist eventually ordered the use of a wheelchair for long distances which “helped and the pain was more bearable, more controllable.” Increasingly, the “feeling” in his legs lessened until eventually he had none, lost the use of his legs totally and had to use the wheelchair full time. However, he does not remember ever being taught how to use a wheelchair properly. Increasing pain in his shoulders has decreased his mobility again. He is currently awaiting assessment for an electric wheelchair to help relieve his shoulders. “They’ve assured me that the RSI [repetitive strain injury] in my shoulders will heal if they’re not used.” Tom has found that having the incorrect equipment has had a major effect on his mobility. He “went for a grant” to get a vehicle he could drive. I picked a van because I could lie down flat. The OT [Occupational Therapy], in their wisdom, decided they weren’t going to let me drive a van and that was entirely unsuitable and made me take a [car]. I was at the time annoyed that I couldn’t take the van, but grateful that I could have any vehicle. It turned out I can’t drive that vehicle to [ X, one hour’s journey]. I lose the use of my arms, It’s got the wrong hand controls. And the seating is wrong. He has since got another car with bench seating, paid himself for hand controls to go in that car, and is able to drive long distances with no problems. Tom also has problems with mobility within his house, which has stairs to the sleeping area. He slides “down on me bum and get me feet in line in the right place with the wheelchair and throw myself at it.” This requires a “giant shove” from his arms. Lately, they have had a tendency to give way without warning, causing him to fall heavily. He is now looking for a single level house to move to. Tom was the only participant to describe unwanted and dangerous motion. When he has one of his “ironing board” spasm attacks, he finds himself thrown out of the chair on to the ground, totally immobilised. If others are with him, they place him in recovery position but he is unable to get into the sitting position from there and get back into his chair when he feels better. If others are not around, he’s “buggered, like a stranded whale. I lay outside in the rain for three hours one day because of it.” Will Will used to really enjoy outdoor sports, playing golf, running cross country, playing roller hockey. Now, fatigue quickly exhausts him. “Ten minutes each way” of soccer with his children leaves him “bushed”, requiring a couple of days to get over the fatigue such activity engenders. He can no longer dance, or move around, or stand talking to people at social gatherings. Nor can he sit still at functions, because he starts to “fidget.” Back pain worsens as his physical activity increases, leading to interruptions in his daily activities because he must stop what he is doing and sit for a while. Lifestyle, defined in the dictionary as ‘an individual’s whole way of living’ (Webster, 1998) is a term that sums up the way in which people are integral with their environment, each having a constant effect on the other as energy flows between them. Any person having to come to grips with a new life with a chronic illness may face changes in the way they live their life. This can be difficult for the person and for their families. Descriptions by participants that are reflections of changes to lifestyle include altered relationships, being a parent, alterations in financial circumstances, social life and working life. Greg, Jack, Mary, Paul, Tom and Will are still with their original partners, although maintaining these relationships has not been without problems. Greg Greg’s partner has developed a chronic illness with associated disability and he finds this rather stressful and worrying. “I mean it’s fairly obvious when she has a bad day (wry laughter). And if I have a bad day at the same time, it sort of stresses me a bit.” Jack Jack finds both fatigue and pain affect his relationship. One of the hardest things is not, it’s not me coping with it, it’s my family. My wife can’t understand it. She married a very, very fit strong young man . . . and she can’t relate . . . she thinks that I’m a bit lazy. But I’m not. As you can see, I’ve worked hard and can do - I’m an [x] by trade, and if I wasn’t building homes, I was working on cars. And now, all of a sudden, I can’t do the things I used to be able to do. I’ve pottered around with things and I love working when I’m able. But I’m limited to what I can do. Very limited. Jane Jane’s symptoms had a devastating effect on her first relationship. It broke up my engagement and my wedding was called off, because my fiance couldn’t cope with my disability, as he called it. It broke my whole relationship up and for many years I didn’t go out . . . it really ruined my life. Jim Jim’s second marriage eventually collapsed. “I couldn’t manage myself. And it was obviously creating a lot of tension, because my wife couldn’t get on and do what she was supposed to be doing [running their business] . . . So it was basically downhill from there.” He still seems stunned by the change to his second marriage. “I never imagined for one minute that I would have been in this situation. Or that I . . . OK, I’m on my own, but there were two of us. And I didn’t think this could ever happen.” He has not formed a new relationship. Mary Mary’s husband has developed a major problem with his back. She finds this a point of common understanding. “There are some aspects of these kinds of things that you can only understand when you’ve been there, eh?” and had not “thought of it being unusual” that they both have not dissimilar health problems. Tom Tom, who feels his eldest son left home early because he could not cope with his father’s illness, is thankful his wife is still with him, but unsure whether she chose to stay or felt she couldn’t leave. “My wife couldn’t. She was stuck with it. Sure, she could have left me. And I’m grateful she didn’t. But, you know, she stuck by me and fought through it with me.” Several participants whose marriages, or engagements, broke down after the onset of their symptoms, have forged new relationships. Some of these new partners have chronic health problems too. Jane Jane’s new partner is actually an old boyfriend who had wanted to marry her years earlier. She chose her career at that stage, and he could not accept her shift work. Now, he possibly has arachnoiditis too, having had a series of Myodil investigations and suffering “really really badly” sometimes “worse than I am” and she considers them a good match. “We complement each other, because we want to keep going.” Mick Mick has been married twice. He attributes his second breakup to his back problems, but not his first. I don’t think the bad back itself affected my first marriage. It was just her, I think. The second one, it definitely did, yeah. . . . It would be two or three years after the operation that things were really started going wrong, because I just couldn’t - I couldn’t get a job and things were, you know, sort of getting on top of me as far as that was concerned . . . I just couldn’t get out and do a lot of work and that was getting my wife down and, you know, so she walked out on me, from that one. And that just turned my life into a bit of a tizz there for a while. He is now in a new, third relationship. Rose Rose’s first marriage broke up, with her back problems being the “turning point” in an already troubled relationship. She now has a new partner who is very supportive. Terry Terry’s current partner has a chronic illness, which also has major effects on both their lives. Both were aware of their difficulties prior to the beginning of the relationship some ten years ago, and had spent time on their own before coming together. “That was part of the deal. It was both part of our deal. But, I’d been on my own 7 years before.” He believes both having a problem has been a strength. “Because we both know what it’s like to moan to other people, so we tend not to do it. We tend to just get on with it. And when we do say something, we know we really mean it.” All the participants are parents. Greg and Mick did not mention any concerns connected with parenting that they associated with their backs. Changes to their ability to live life as a parent in the way they once just assumed it would be was a theme in common among the other participants, relevant no matter what the age of the children, or whether they were the biological parent or a step-parent. Jack Jack has adult children of whom he spoke proudly and showed photographs to the researcher at interview. However, the serious illness of one of his children during the early stages of his back problems was, he believed, a factor in the way some health professionals approached his health concerns, as they appeared to link his health problems to stress rather than to organic problems. Jane Jane has two new step-children, which she finds gives an unexpected and welcome purpose to in her life. “My future is a lot brighter. I’ve met a nice family. I’ve got two stepchildren - little children, at my age! So my life has to be brighter. I have to keep going for them.” Learning to cope with this instant family has not been without its challenges. It hasn’t been easy. You know, the relationship with children. And then we’ve got a boy at boarding school. But I’ve adjusted - we’ve all adjusted. I think it takes an adjusting time and, a year down the track, I think we’re getting - we’ve got there. It’s just me with my fuse [impatience]. And we’re a good family unit. Jim Jim has two adult children from his first marriage. Both now live overseas, as do his grandchildren. He feels they have “no appreciation” of his health problems, which have “not helped” but that the “rift” was there not because of his back problems but “because I remarried . . . not so much with my son, but my daughter.” He rarely sees or speaks to them. “I’m on my own and that’s that.” Paul Paul has adult children, and young grandchildren, attending their sports events and family occasions whenever possible. Now he knows so much about arachnoiditis, he worries about one of his children, who also has major back pain problems after surgery. Rose Rose, until recently, raised her children as a solo parent. She is very proud of her children and thinks they have turned out wonderfully kind and thoughtful. Her regrets are not so much for the effects of the breakup of her first marriage on the children, as for the effects she feels her symptoms have had on what she could do with them as a parent. Not so much for their sake. My sake. My interpretation of what effect it has on the family. They’ve had to grow up too quick. They haven’t had the childhood that they should have . . . They’ve missed out on so much that I couldn’t do with them. Sports, sort of thing. But they took it in their stride and they never, ever once accused me of not doing this and not doing that. Terry Terry spoke proudly of his children, and stepchildren, and grandchildren, while showing his wall of family photographs. He did not mention any effects his symptoms had had on them. Tom Tom has major regrets about the way his life with his children has been affected. My son, he’s 23 and he remembers me walking. Running around. Working. And I used to pick him up, catch him when he was a toddler. My daughter, she can’t remember me not walking on crutches. My twins, they’re eleven. They don’t remember me out of a wheelchair. My son left home early. He couldn’t accept the changes. He saw me getting worse. he couldn’t accept it and he left home. Will Will, who has a young family, found it interferes with his desire to “horse around” with his sons. I picked him up [his young son] - we were playing silly buggers and I picked him up and slipped over and I couldn’t move. And I had to stay there for about ten minutes . . . so I have to be very careful doing those sorts of silly things, and don’t do them. Faced with unexplained fatigue, he struggles with this inability to do what he feels he should be able to do as a dad of his age. I used to do all those things [play sports etc] . . . but last year I went and played soccer with some kids. We only played ten minutes each way and I was bushed. I felt worse the next day. By four days later I was starting to come right. It took me that long to get over a twenty minute game of soccer. Changes in financial circumstances People with chronic illnesses, particularly once they are no longer earning, tend to suffer financial losses. This can become a compounding problem, in which lack of work opportunities are converted into disability, handicap and poverty (McKenzie, 1996), a poverty trap of the worst kind, because no amount of personal effort will break the cycle. Lack of discretionary income is one of the most consistent factors in limiting life choices for people with disabilities (ibid). Jack For Jack, his change in financial circumstances started early after his first accident, before any of his current symptoms developed. At that time, he could barely walk, had dizzy spells, black outs, and loss of memory. With no diagnosis and no medical leave, his obvious choice was to resign. However, there were problems with the welfare system at the time that forced him to action that still upsets him. At the end of the day, I had to do some horrible things. I was so ill . . . I had a big mortgage. I couldn’t afford to have a stand down period of six weeks with no wages. So I went to work and got myself sacked . . . for the theft of [a piece] of second hand copper pipe. And I picked it up out of the rubbish tin and walked passed the boss and I waved it in his face and I walked out the gate. And he sacked me for theft. This was a major financial loss. I was on the permanent staff. I had a big superannuation. And I was so ill, I was forced to go to those measures. Once diagnosed, he sought his entitlement to ACC because the accident had happened at work. We fought ACC for twelve years through the courts, to get some sort of a claim for me which, by the time I got it, I lost a third of it in lawyer’s fee. So - and I lost more in wages the first year off work, than what I ended up getting in the total claim. So it was a complete financial and terrible mental thing to go through. Jim Jim described very clearly the spiral down which financial fortunes can flow. Before all this happened, I was extremely successful . . . I was mortgage free, owned a house. And after seventeen years, I ended up owing $200,000 . . . we had to go into mortgages and everything, since I got sick. He has given thought since as to how he could have avoided that situation. I have thought about it since, because, I mean, now that I’m landed on my own, I don’t even have those opportunities any more . . . looking back, yes. There were ways that it certainly could have been avoided. But, you see, it changed me as a person, because I used to be able to say, I could operate on instinct and impulse. You know? And not have to think. I’ve had to revert back to thinking, and I’ve gone the other way. Whereas I get quite serious . . . it’s got to now, where I feel, at the moment, it’s a slow painful process. Jim finds this downward progression very difficult to deal with, because it seems so much out of his control. Sometimes he just wants to precipitate the inevitable. Am I better off just hitting the bottom, getting there straight away and then coming back? Or is there a better way to do it? Get right down there and then you know where you’re at then. Because at the moment it just feels as if it’s just a gradual, painful - there goes another thing, there goes another thing. Do I want to get rid of it all right now? Let’s get it over and done with, so that I don’t have this painful, slow, painful . . . And then I can come back from that. At least I know where I am with that. Terry Property can also suffer a financial impact because of disability from the symptoms. Terry recognises the financial impact neglect of his house leads to. “The value of your property suffers because of that.” Social life was severely curtailed for most participants. Jane Friendships were affected, as Jane discovered. People, if they can’t see where the pain is, or see an injury, don’t understand. I’ve had friends say to me, “Oh. but you used to be able to do that. You should still be able to do it.” But they can’t see. And they don’t understand, it hurts, it hurts. It’s mainly been friends. She lost her social confidence. For many years I didn’t go out. Because I couldn’t sit or stand long enough. And people didn’t understand, when you were bobbing up and down and things like that. And I probably didn’t have the confidence either, just to do my own thing. If I wanted to lie on the floor, I couldn’t. Now, I’ll do whatever I want to do. I don’t care about other people. Jim Jim finds the social facade difficult too, involving acting a role he feels compelled to play. It’s like keeping up a brave face all the time . . . You keep doing things that you know you shouldn’t be doing because, somehow, it’s expected of you. You’ve got to do this, you’re not allowed to be - you know - a failure, they make you feel. Rose Rose now has a very restricted social life. She cannot sit for long enough to go to the theatre or cinema, finding that even going out for dinner takes too long and that, at events like a smorgasbord, once she sits down she can’t get up to get her meal. She would love to be more involved in the community, because “you get very lonely.” Friendships drifted away, partly because she moved towns, partly because friends couldn’t “handle it.” A close neighbour struck problems. Rose ended up being involved with those problems as well as her own and she ‘just couldn’t deal with it.” Her new friends are “not from unsuffering people.” Most of all, having always been a shy person, she now feels very self conscious that people are looking at her. Her husband’s protestations that it was all in her imagination were somewhat disproved when she was stopped in the street and asked if she had a bad hip. There is also the constant fear that “you’re moaning all the time” which leads to the converse, bottling it all up. Will, who generally is better for keeping moving, finds there are limits to just how much moving he can do, especially when he is out at social events. I used to get up and dance. But I can’t do that either [so] you just don’t go. I just run out of steam after ten minutes or something. But if I have to sit at a table, I can’t keep still. Being able to undertake paid work is considered by society as an important aspect of daily living. Participants were asked how living with their symptoms had affected their work life. Greg Greg’s original injury at work was “accepted by ACC.” He has not been in paid employment for many years but is busy on a number of committees, holding office on many of them. He sees this work in unpaid employment as a trap when it comes to getting back into paid employment, as it does not appear to serve as sufficient work experience. Jack Jack is currently not in paid employment, spending his time, when able, working on his house and coaching children’s sports teams. He has, however, tried very hard over the years to keep in paid employment. At other times he felt forced into remaining at work despite being unwell because a lack of diagnosis did not entitle him to appropriate benefits. Initially on an unemployment benefit, he was then put onto “a sickness benefit and I was probably on that for about six months until they diagnosed my problem.” Once diagnosed, he “went to a lawyer and said to him, and they transferred me on to ACC. But it took years of fighting it.” Jane Jane is on ACC and found their initial attempts to return her to the paid work force a less than happy experience. They tried to rehabilitate me into an office. And I loathed it. Two hours and they said, “You can go.” And said to ACC, “This is a waste of time.” They made me sit. I had to see how long I could sit. Well, it was just cruel. Now working part-time for home support organisations, she has some satisfaction. “What I’m doing, it mightn’t be a glamorous job, but I enjoy it. I’m able to cope with it. If I can increase my hours, I’m going to do so. I get a lot of reward out of it.” Jim Jim is involved in voluntary work but is unable to undertake regular work hours because of the variability of his condition. Mary Mary has been told by ACC that “there’s no possibility of my being rehabilitated for work. I’m just sort of left.” When able, she helps in her daughter’s shop, but has injured herself by falling while there. Mick Mick’s working life has been “very significantly” affected by his symptoms. He has not been in paid employment since 1984. Rose Rose had to give up her own business because she could not stand for the long hours required. She has now become computer literate and has a busy time on the Internet doing voluntary work for organisations. She is not sure where her employment opportunities may lie. Her ACC file reports “that there was no possible recovery, that my condition was permanent, that there was no possible recovery from nerve root damage.” She has subsequently been sidelined by ACC into their “unemployable” file. Terry Terry, also on ACC, has recently started part-time work with a support agency. He finds the number of hours he is paid for is greatly exceeded by the number of hours he actually works but feels that is a characteristic of that kind of job, not because his symptoms slow him down. Terry, used to very physically demanding occupations and still in the middle of his expected working life, finds his employment potentials greatly restricted through his lack of mobility, which he relates to both fatigue and pain. Tom Tom has been on ACC for twenty years, on and off. He has managed to find salaried work at times, particularly at first, but his deteriorating lower limb movement, increasing pain, and paralysis, have taken their toll. He had been self-employed part-time up until just prior to the first interview but ongoing problems with pain have meant he has not been able to work since. Will Will is on ACC’s books but is working full-time and receiving no payment from them. “I’m still under ACC. But I don’t know what they’re doing. They haven’t been in contact with me for ages.” Will’s doctor, however, wanted him to stop work, a suggestion Will did not accept. So he wanted me to give up my job. He said, “It’s something you’re doing at work.” I said, “I don’t think it’s anything I’m doing at work. I had three or four weeks off on holiday and it didn’t make any difference.” I said, “It’s all right for you to say find something else to do, but it’s the only thing I’ve done.” Being believed was an issue raised by six of the participants. Three of the six have confirmed diagnoses of arachnoiditis and two have histories of major back injuries and multiple surgeries. Another participant, who felt she personally had been believed, mentioned a friend with similar symptoms who had not. Responses concerning being believed were raised in relation to descriptions of experiences in getting a diagnosis. Jack Jack had two long periods, prior to the development of his current symptoms, of being considered a “nutter”, both of which eventually ended with the discovery of valid reasons for his symptoms and subsequent relief by surgery. He found the disbelief he faced when he described his initial symptoms following his injury shattering when added to the already traumatic illness of his young child. I was having dizzy spells and falling over, collapsing [from what was later found to be a splinter of bone in his cervical spine]. And they were telling me . . . that I was overworking . . . and I had a [seriously ill child] and that was causing the stress and that was causing the dizzy spells and headaches.” Jack was eventually sent to a psychiatric unit. I’d been to so many neurologists and they’d all told me the same thing. I was actually wondering whether I was, partially, making more out of it than what I - I knew definitely there was something wrong, but I was wondering in my own mind, at the end of the day, was I making more out of it than I thought. And they were sort of talking me into [thinking that]. It was the strange nature of the symptoms that seemed to create the problems of disbelief. As Jack put it, I think that some of the symptoms I was telling them, they couldn’t believe were happening. I think they just didn’t believe that a man of my physical size and strength couldn’t use my right hand properly and I was having trouble moving my left ankle. He links his eventual diagnoses to what many perceive as the ultimate in good fortune. “And I felt like I’d won the Golden Kiwi. After all the years of being told that I was a nutter.” However, as a result of these experiences he has not told his doctors of the change in his current symptoms and his increasing disability. Jane Jane has a friend with the same symptoms as Jane. This friend’s GP told her it was all in her head “whereas mine has never, ever . . . he knows me well enough . . . which I’m very grateful I’ve got a good G.P. . . . Nobody’s ever disbelieved me.” Jim Jim was sent not to only to rehabilitation units, but also to psychiatric units. He remembers the health professionals there as determined to deny his pain and his disabilities. They were trying to pretend I didn’t have a back problem . . . they ignored every aspect of help that I needed, in an attempt to prove it was all in my head. The physio said that I was actually making the pain, creating the pain myself. He feels his attempts to explain made no difference. He found getting his food trays, which were raised on a self-service bar where he had to reach up to access them, extremely painful. He was also sent to occupational therapy, where he had to lean forward over a table, something else which exacerbates his pain. I explained the difficulty [to the physiotherapist]. He said, “Well, just move it.” My arm. I said, “I can’t, I can’t get it up.” Oh, they just made everything so hard . . . He found the attitudes there “just totally, totally degrading” and feels he has constantly “been struggling to be accepted.” He has a sense of a widening of the effects of disbelief, which “makes you doubt yourself very much and starts to create doubts amongst others as well. So it just broadens the battle, if you like, for survival.” He can tell people what is happening “and then they’ll just turn around and tell me it’s in my head.” He feels people have “always attached it to the depression” and did “not at all” believe he had the symptoms he said he had. Jim noted the strangeness of his symptoms as a factor in disbelief, feeling he was the one required to provide an explanation for them “There’s more to it than just a back. I mean, there are rare things happening but, I’m sorry, I can’t explain them.” He now has a G.P. who, he feels, believes him. He attributed finding this doctor to good fortune. “I’ve been lucky in that I’ve got a GP who will listen to what I say. And now, doubly lucky, because he has a second patient who he can compare like with. Mary In seeking relief for her symptoms from a pain specialist, Mary remembers being made to feel very, very odd. I really felt guilty for wasting his time. That’s got nothing to do with it. The patient has to be believed. They have to have someone to listen to them and to believe them. Somebody in the medical profession has to. Mary is in the situation of not wanting to believe a gloomy prognosis in the absence of a diagnosis. Unable to have a confirmatory MRI until she has lost some weight, she has nonetheless been given a rather frightening prognosis in the absence of any diagnosis. “The scar tissue was such that it would eventually cut off all sensation from the cord and I would be paraplegic. That’s inevitable. There’s absolutely no treatment.” On being asked whether she shares that belief, she replied, “I don’t want to. [But] I’ve went to [two orthopaedic specialists] and they’re both of the same opinion.” Although she seems to accept their findings as a clinical diagnosis, she has decided that at this stage she does not want an MRI even when she has lost the weight, because she does not want the inevitability she feels the radiologically confirmed diagnosis will bring her. Mary’s current G.P. did not, she feels, initially believe her but this changed over time. Originally, I think there was a bit there. But because I kept coming back and I didn’t change. And when I started with him, I’m not sure what was in the letter, but my doctor in H sent a letter down. Normally she left them open for me to read because she knew I would open them anyway. But this one was sent to him . . . It coincided with the time when I was explaining to him that I wasn’t an idiot, I had some information and I wasn’t going to be fobbed off. And I was actually with him for nearly an hour that day. Things did change “dramatically” from then. Mary thinks “it may have been an informed” letter. Mick When Mick was first “complaining of me back playing up,” his doctor linked it to stresses at home. He put it down to all in my head. He started giving me psychotherapy and what have you. He just thought it was - you know, I was having problems with boys at home and things like that and he just thought well, that’s what it was that was causing the [pain]. I don’t think that was the problem. This experience has made him slow to seek further help, despite having “got a lot more symptoms as things have gone on.” Rose Rose felt she was not believed right from the start and wonders if that was because she waited for her back to get better by itself and continued to work in the period immediately after her injury. Her husband of the time did not believe she had a problem and she remembers the specialist as patronising. He diagnosed a prolapsed disc, told her the pain would fluctuate but not get any worse and sent her for an epidural injection of Depo Medrol. Expectations of the efficacy of epidural steroids were, Rose believes, such that, when her pain worsened afterwards, nobody would accept her description of her pain. “The pain I had after that was just unbelievable. And, well, on the day that he decided that I needed surgery, he actually wrote that I was worse after the epidural.” Because she felt no one believed her, she accepted a repeat of the procedure. “I felt I had to go through with it because he didn’t believe me. That was the only way I could prove that it was true.” Rose has recently found a doctor who believes her - “he’s been marvellous.” Even so, Rose has withheld her old notes from this doctor because she does not wish them to influence his belief in her and she feared he would think she was “jumping on the bandwagon” because of publicity on arachnoiditis in the news media at the time when she first visited him. Terry Terry expressed a belief that one of the consequences of not being believed is that you are receiving financial support on false pretences. Neighbours over the fence saying, “Dole bludger, get a job” because there is nothing visible. You might be sort of be walking around with the broken arsed walk but there’s nothing that people can tangibly see. You haven’t got a crutch. You haven’t got walking stick. You haven’t got a bandage on it. You haven’t had a leg torn off or whatever. Being with those who implicitly believe because they share the same experiences has been a factor in the experience since the publicity in the mid 1990’s. As Jim said, “I could relate to just about everything they were referring to and I thought, “Oh, my God! Thank God for that.”” The support groups that have developed since then have reinforced this feeling of implicit belief. Jim expresses it thus. Some of it is just pure camaraderie, but it’s knowing that, if I say something relating to my symptoms, somebody knows what I’m talking about. I don’t have to go through a long process. You know, I don’t feel I’m having to justify my existence. Tom Tom has had intense emotional experiences dealing with the reactions of health professionals to the very serious symptoms affecting him. Not being believed made him feel “very, very scared” during a period when he desperately wanted help because of all the changes that were happening to him. “Having them say it was psychological when you knew you were in a lot of pain and you couldn’t walk, drives you up the wall.” He was sent for tests because his doctors had attributed his symptoms to psychological factors. “And they sent me to [a] rehabilitation centre. To be tested. Because I had told them about it, and they didn’t believe me.” He found it unhelpful to instead be told things he already knew only too well, as if they were a diagnosis, for example, “you are paralysed,” and “you’ve got no control over your bowel and bladder.” The feeling of not being believed continued throughout his tests at the rehabilitation unit. “I kept saying, I can’t feel it . . . And they didn’t believe me” He has had a sense of embattlement ever since. “from then on it was a constant fight. turning round and saying, “I’m not in a wheelchair for fun. There’s something wrong. Please, what is it?”” Another side of disbelief for Tom was coming to hope that maybe it was psychological. “That my mind had actually stopped me from walking because of the pain. And that they’d, you know, be able to treat me, and I’d be able to walk.” This made eventual diagnosis a double edged sword. On first being given a diagnosis of arachnoiditis he “felt like a whole weight had been lifted off my shoulders” because “Phew, someone actually believes me.” But, at the same time, he had to accept that he may not walk again. Then the diagnosis was changed again to “nothing” and “then came the quandary. What the hell is wrong with you. And I thought, “Oh gosh. Ten years down the tubes and here we go again.”” When he did eventually get reconfirmation of adhesive arachnoiditis as a diagnosis just prior to the first interview, he found the implications very hard to cope with. “It just knocked me, And it still does at times.” Will Will has never had anyone say they disbelieved in the presence of his symptoms. However, he believes they are attributable to arachnoiditis linked to metrizamide myelogram even though his doctors do not believe that could be so. He would not mind if doctors could prove he doesn’t have arachnoiditis, provided they could tell him what it was. What does irk him is their rationale that he cannot have arachnoiditis because of a conviction that metrizamide does not cause it and their apparent lack of interest in any of the literature he could show them that indicates otherwise. No one seems to want to tell me what I have got, but everyone wants to tell me that I haven’t got arachnoiditis. But they don’t know what I have got. But it’s definitely not arachnoiditis. Because you don’t get that from metrizamide . . . I even took a whole lot of stuff to [the specialist] with me. And he said, “No,” and he wrote in the letter to them [ACC] that the people in his - the neurologists in New Zealand, in his circle, said that you can no way get it from metrizamide. And I said, “Well, what about all the information that’s printed about it?” And he said, “Oh, I haven’t seen any of that.” I said, “I’ve got lots of it at home.” And he said, “I don’t want to see it.” This attitude led to a forthright opinion from Will. “He just struck me as being an ignorant sort of a person who didn’t want to know what I had but he just wanted the money that I was paying.” Will bases his belief that he has arachnoiditis on his MRI report. “One of the things on my [report] I’ve got, it says I’ve got a thickened membrane . . . it’s the thoracic part of my spine, Something in there is thicker than the rest.” Within a unitary framework, time is not linear. Each moment is a relative present as a person’s thoughts move back to their past experiences and memories and forward to their future hopes and fears when contemplating their situation. Having a condition considered ‘incurable’ and ‘intractable’ is not considered indicative of strong future possibilities. Participants tended to endorse this view when talking about their envisaged futures. The consistent theme in treatment possibilities was that all that could be done has been done and there was nothing more that could be tried. Societal expectations reinforced those views. ACC had moved four of the participants to what several participants termed the ‘backburner’ file, that is, not expected to ever return to paid employment. Greg Greg has recent MRI confirmation that he does not have arachnoiditis. While pleased that he does not, he is still uncertain whether things are that simple. I don’t really know. I mean, these - I sort of wonder if it’s always this cut and dry. I mean, is it you’ve got it or you haven’t got it. Or, is that you haven’t got it today but you could have it in a week’s time. Or, you didn’t have it six months ago so we’ll have another look now. Oh, yes. You have got it. Jack Jack sees things in a despairing way. I think that things are getting worse . . . the bottom of my back, the ME, and the things that are happening to my legs . . . They’ve virtually told me there is nothing more they can do for me - the vertebrae above the operation site will probably end up collapsing and getting worse and I may have to have that fused at some point in time . . . they can’t do anything more in my neck area and they can’t, probably, do anything more to the operation site, That’s finished, like, whatever I’ve got, I’ve got. I’m stuck with. Jane Jane, happy with her new young family and partner, is optimistic. Hopefully, I won’t get any worse and I’ll be able to carry on like I am, or even be better. I’m pretty sure once they do something with my knee and I get back biking, I’m going to be that much better with the pain, rather than be sitting around. Jim Jim feels all his options have been tried, leaving a bleak future. I’ve had so much surgery already that there’s nobody left who can do any more. But I’m aware of that and really I don’t want any more. I’ll keep what I’ve got and live with that. I honestly feel that the future is not good. He hasn’t hit “rockbottom” yet but “it’s backwards, it’s beyond my control.” He no longer feels he can change that progression because he has “lost a lot of trust in necessary people.” Mary Mary is determined she is “going to be 96. And I’m going to be able to walk, maybe not very far.” Apart from that, she is hesitant to “put anything in concrete. I just want to keep going.” She has been told that the original damage to her spine is such that the pressure on her cord will increase. “The longer it goes, the tighter the constriction and soon or later there will be nothing . . . Nothing can be done” to prevent this outcome. Mick Mick is unsure of his future. He wishes he could “get out and do some work” but otherwise considers himself “one of the luckier persons that’s had the injections,” at the same time mindful that “it could still get worse.” Paul Paul is fairly philosophical and cautiously optimistic that he won’t get worse. Being past retirement age, he has no problems with knowing he won’t work again. “I’m not terribly hopeful of getting any better. As long as I don’t deteriorate too much further, I’m quite happy. I still haven’t any pain.” Terry Terry finds it hard to accept he will not, in the future, be a major contributor to family income. I guess, in time to come, [wife] is going to be the breadwinner and I’m going to be the full time domestic - which I am anyway. But I guess ACC is not forever. Somewhere down the track they’re going to boot me off it and [wife] is going to be the major earner in this house. And I’ve got trouble accepting that. Tom Tom has a young family and he find his future is full of fears. I think the biggest fear is not knowing what’s going to happen and you always fear that. And I have three fears. One is not knowing what is going to happen. The other is what the medical profession is going to do. They’re a lot better that what they were. They actually explain things now. In the past, you put all your trust in them and they didn’t explain anything. So, you didn’t know. And there’s always the fear of the unknown. And the other fear is, the worst one is, am I ever going to be able to, and how much more am I going to lose. That is the worst fear. Will Will, also father of a young family, has had to change his plans for his working future. The business that I’m in, that I rent, I’ve got an option of buying into it. But, because of what’s wrong with my back, I haven’t done anything about it. Because I don’t know whether I could buy into it and then it [his back] could give out and then I’d be stuck with it. The fact that I don’t know if it’s going to get any worse or if it’s going to get any better. Or what it is, or if it is that. So the whole uncertainty is the whole thing. The uncertainty is worsened by the way his symptoms come and go. “For quite a while, I’ll be really good, I’ll have nothing. And then, all of a sudden, I’ll get heaps of pins and needles or heaps of eye things” He is pessimistic about the future. “If they [the symptoms] are arachnoiditis, they’ll get worse, I guess.” Arachnoiditis and spiritual meaning Spirituality is a reflection of the pandimensional nature of human life, postulated as an integral element within the principles of homeodynamics (Malinski, 1991a). Participants were asked how faith and/or spiritual dimensions played a part in their lives with their symptoms, and what effect their experiences had had on their spiritual perceptions and beliefs. This was not meant as an indepth discussion of their perceptions but to offer an opportunity for those who felt strongly about this aspect of their lives to voice their thoughts. Two did not find this question particularly relevant. Mick considered himself a “practical” person and Paul also considered himself “not really a spiritual person.” Jane Jane has questioned her experiences but had not directly related them to religious beliefs. I probably question that all the time in my mind, And especially when I see people run, and walking and jogging, and things like that. I always say, “Why isn’t that me?” But not in a nasty way. I just envy them. Because that used to be me. Jim Jim, brought up a “strict” Catholic who served as an altar boy, is not now a “practising Christian or anything like that. But I believe there’s something there” and he has an internalised practise which is “unnoticed. And, I think, that’s more important than to be seen to be practising.” Someone once said to him “You must have been a bad little bugger when you were younger, and it’s come back to haunt you” but he rejects that view and any theological thinking that pain is developmental for the soul. “I don’t think that’s the case at all.” Mary Mary married into a Catholic family. She considers herself a Christian “as in believing in God and the way I like to live” but she feels the odd one out as far as Catholic teachings and attitudes go and that it provides her no personal support. “. . . you get totally different attitudes. When you think you’re getting support, they tell you other things . . . it’s not something I can hold on to.” Nonetheless, she hopes an afterlife will be there for her at the end. “I just sort of hope, when my time comes, my parents will be there and my grandmother will be there.” Rose Rose used to be “what they call a born again Christian.” However, she had a frightening experience that left her alienated from that church. I went to a healing session, after the injection. And the healer, he, I can’t think of his name, he’s a famous New Zealand guy, was showing the minister how to do it. And they decided they’d try it on me. And they lifted both my legs and the whole congregation was there and I screamed . . . And that’s when I knew it wasn’t from God. Because they would have known not to lift both my legs. She has since moved towns, but has not rejoined a church because of the “way you’ve got to go and explain everything again” to the new people she would meet. Nonetheless, she still retains a belief in God, and find this helps in a lot of ways. She strongly rejects the idea of divine punishment or pain as developmental for the soul. “I can’t see it. Nobody should be ever put in this position.” Terry Terry also sees himself as “not a greatly practising spiritual type of person.” He attributed some of that attitude to the “hardnosed training” of one of his previous professions. “If you start questioning the meaning of life when you’re hosing someone up off the road after an accident, you stop doing it.” He sees avoiding that kind of question as a “coping strategy” and has accordingly adapted his present life to match his situation. I accept it now. I wasn’t so accepting of it when it happened. I thought that I’d been dealt a bit of a bad deal. But now I accept that I can’t do the things that I want to do. But I’m more at peace with that sort of thing, That’s the way it is, so do something else that you can do. There was no linkage made by those who had spoken of suicide with religious teachings or spiritual beliefs. The worst and the best of daily life The previous descriptions have been of particular facets of the participants lives. The researcher wished to see what impact participants felt the experience of living with their symptoms had had on their lives as a whole. This overall glimpse was considered more relevant than ratings gained by using separate measurements of particular symptoms, such as pain scales, as it was more in keeping with the Rogerian view of humans as unitary beings. Accordingly, using a simple verbal rating scale, participants were asked to rate how they felt overall at interview, if ten was the worst they could imagine themselves being and zero was the best. They were then asked to say what rating they would consider themselves to be at their worst and at their best. With one exception, participants did not find this difficult, and readily used the scale. Greg Greg had a sore throat at the time this question was asked and he felt this had raised his rating to a four. At his best, he feels he would be a two. The worst day he could remember was an “eight, eight and a half, perhaps.” and that was from “moods and everything else. You know, when you sort of allow yourself.” Greg is on antidepressants and had identified depression as a major factor in his life. Jack Jack could not place himself “at the top end of the scale, because I’m not in a wheelchair.” However, he feels he is “certainly getting toward the second half of the scale so far as just general life things,” and relates this to increasing dependency on other people and on medication. “I’ve got more dependent now. And I’ve got some drugs.” Jane Jane, who at the time of interview had both a headache and backache, rated herself as a six. This was her most common level of being. She could, at her best times, feel herself to be a three but these moments occurred only as “parts of the day” and were unpredictably variable as to time of day and duration. At her worst times, when she can do very little, she feels she could “probably get to a nine.” Jim Jim “wouldn’t get a whole good day but I would certainly have a peak” at which time he would be four or three. At interview, he felt himself to be “about seven.” His worst days are a nine. “There are days when I just can’t get up.” Mary Mary related her good and bad times to pain. She felt she reached nine at her worst. She “won’t let” herself reach ten. For her, a really good day would be a six and that’s only on “days when I take more medication than I should.” Prior to her interview, she had taken a double dose of analgesia and a sleeping tablet which she uses for its muscle relaxing properties and rated herself about a six and a half during interview. Mick Mick expressed a small variation in his level of rating, which ranged from four to five, depending on how much he could actually do. “Like there are times when I can go into town, I could probably walk the whole street a couple of times. And there’s times when I can only walk, say, fifty yards down and I’m buggered.” Paul Paul was the only participant who found himself unable to find any relevance in the idea of a scale. He has no pain that interferes with his life and finds “no problem” with his lifestyle, even with his major decrease in mobility, reiterating that he’s “quite accepting of my condition.” Rose Rose initially felt she was “a seven” at the time of interview but, after giving consideration to how she was at her worst, she lowered that to “a five.” For her, the bad days come when her pain is at its worst and on those days she would definitely be “a ten.” Such days occur at least three times a week. She describes those times as “like it’s out of control and I can’t control it and I lose control of myself.” Terry Terry, a four at time of interview, can be “a two with medication.” At his worst, he would be an eight. These ratings are linked by him to how much activity he is able to undertake. When he has a migraine he “just can’t function” and as far as he is “concerned, switch off, that’s off the scale.” Tom Tom, already in a wheelchair, relates his scaling to other things that might be permanent, such as loss of bladder or bowel control, rather than to pain or loss of lower limb function. He hopes his pain is “temporary.” At the time of interview he was “probably about a five” which was his most common level of being. During times of loss of control, he rates himself as “an eight.” Will Will places himself in the middle, a four or a five, because he can “still go to work, which is a good thing.” If he could not do so “it would be a ten.” He has had to take days off work already, not with pain, but with fatigue. Pain is the foremost symptom and depression and insomnia two other symptoms for which participants were likely to have sought help and relief. Several participants were also on medication for other concomitant conditions, such as diabetes and arthritis. A wide range of self help and pharmaceutical options have been tried. The use of pharmaceutical products for pain relief is widely accepted in the Western world, and there is an expectation on the part of those seeking it that relief will be obtained, at least to some degree. This has not been the experience of the study participants, who have found their medication for pain relief largely inefficacious. Participants also use pharmaceutical products for a range of problems other than pain management, including depression, muscle spasms and sleeping difficulties. Greg Greg takes medication for a number of problems, including “pain relief, muscle relaxants for my back. I’m on medication for asthma. I’m on medication for my depression. And I take sleeping pills to get to sleep at night.” He feels his asthma is probably “more nervous asthma than anything, really.” He has noted an inconsistency in prescribing for his medication. I’ve been in a hospital where they’re treating you for pneumonia and not treating you for the other stuff. And you get sick of telling people that you take other medication for other situations. You sort of think, oh, well, what the hell. Fix the pneumonia and when I get home, I’ll take the other pills and everything will come right eventually. Jack Jack spoke of an undesirable increase in his use of medication just to cope with his day. I’m more dependent now and I’ve got some drugs there, DHC. And I mean I now have got to - I used to take them when I had something on, so I could cope with what I was doing. But now I’m taking it just to make myself feel a little bit better. Jane For headaches, Jane usually takes “a couple of Panadol, and sometimes two hours later, I have to take another two, and I can usually get rid of 90% of the pain that way. Just by lying quietly.” Even so, her headache may still be there the next morning and can last several days. Jane is restricted in her options for medications. I’m very allergic to a lot of pills. I can’t take a lot of painkillers. I can’t take anything with codeine or anything. All I can take with is Fortral and Panadol. I have to be content with those two. And I have to be pretty bad to take the Fortral. Aware of the limitations involved in Panadol usage, Jane does not usually take more than eight a day. “Sometimes I take more, but, umm, I’m pretty careful. Because I know what can happen.” Jim Jim takes a number of different medications. “There’s ten or eleven darned pills, that’s just the morning. There’s more to come, the same again tonight.” He is on medication for “arthritis and fibromyalgia”, “blood pressure” and “cholesterol.” He is currently on Prozac, which has less side effects for him than Amitriptyline. He has not found that any of the anti-depressants did anything for the pain. “It doesn’t contribute to any - OK, it might stop the amount of depression, if you like, but I don’t think it affects - it certainly doesn’t contribute to any relief anywhere.” For pain, he takes Voltaren. “What I have for pain is Voltaren. I can have three of those a day.” He believes the Voltaren does have a therapeutic effect because he knows what happens when he does not take it. Because, I mean, I’ve tried to come off them, from time to time. And within five days I’ve had it. I’m back on them. It then takes time for it to build up again. You know. It takes well over a week to, umm, ahh, to get back. He has “been on those for about 11 years now” and does not feel he gets any side effects from it. At one stage he was prescribed Valium for his pain. At one time, I was told, “Oh, just keep taking Valium. Keep taking Valium.” That was the specialist advice, take some more Valium. And I found that that was actually making me worse, and stopped on my own accord. He stopped it because he found it interfered with his feelings of control over his situation. “You couldn’t do anything. Yeah, you were just - because I think that was what was wrong. That was why it wasn’t working. Because I couldn’t do anything. Because that was in control, I wasn’t.” Jim also takes a sleeping pill at night. I have the medication, Temazepam, for sleep. And the most I can get out of them usefully is four hours. I can take up to three a night if I so wished but I try and get by on two and like, when I know - with, like tomorrow, I know if I take three tonight, that’s fine. Tomorrow I can have a rest day and it doesn’t matter. So I do it that way. Mary Mary finds that her lower back pain “when it’s very bad, seems to drag everything else as well. It just seems to roll up my spine.” When this happens, she gets “on to the medication and hope that something will work and just keep going.” She has “days when I take more medication than I should” and doubles doses and mixes tablets to achieve the desired effect. She took four Digesic prior to interview and uses “the Baclofen, which although it’s a sleeping tablet has wonderful muscle relaxing properties.” She is also on medication for migraines. Mary uses “Digesic, Amitriptyline, Paramax and sometimes the Maxolon separately, Baclofen and Voltaren D, the soluble one.” The Amitriptyline, 150mg, is for both depression and pain management and “seems to hit two birds with one stone.” Mary has worked out a dosage plan that enables her to cope with her day. “I dose it into basic areas. I have my first what I call a cocktail at about 4 o’clock in the morning. And that’s one Amitriptyline, two Digesic, a Voltaren and half a Zoplicone.” On really bad days, her doctor gives her Voltaren injections. She had Voltaren injections every second day for a week after a recent fall. She has noted some side effects from her medication use. Amitriptyline causes marked short term memory loss. Because that’s one of the side effects of Amitriptyline - short term memory has absolutely gone. Drives [husband] out of his tree at times. Because something will happen at night and I’ll ask him about it again in the morning. Gets really p’d off. Mary takes Voltaren orally and intramuscularly. Since November 1997, when she fell down some steps, she has taken soluble Voltaren D twice a day in her ‘cocktail’ combining it with Amitriptyline, Digesic and half a Zoplicone. At the time of her fall she had Voltaren injections every second day for a week. She also has Voltaren injections from the doctor on “the really bad days.” While this achieves some relief for her, she is aware of a price she has to pay for that relief. Personally, I think that the drugs like the Voltaren, the what-have-you, they can affect you. The Voltaren, the anti-inflammatories, I think actually reduce your ability to, for the lung function to be as good as it could be. And I know if I’ve had a really bad few days and I’ve been on a lot of medication, I’m inclined to have more difficulty breathing. Voltaren is contraindicated in patients in whom asthma is precipitated by acetylsalicylic acid but respiratory problems are not noted as an adverse effect (Voltaren information insert, 1993). When talking about the possibility of opiod use, Mary revealed she now has “an absolute fear of really |
