ESTATUTOS Capítulo

Frustration

A lack of perceived control of their body and not achieving desired results led to extreme frustration and low motivation for self-care activities for many participants. Participants described ongoing frustration that their body would not respond to their attempts to

maintain blood glucose levels within target ranges and at not achieving the expected reward for their self-care efforts, such as improved blood glucose control. This was especially so when the body responded inconsistently to activity, insulin dosing and food intake, as described by this participant:

Oh it can go anywhere from just down with low blood sugars and high blood sugars and that to absolute frustration that my body does not do what it wants to do. Which is often times things people face when they‟re older but not things people face when they‟re younger. At 20 you shouldn‟t have to say well I have to control what my body‟s doing every time I eat

Frustration due to a lack of perceived control over their body could lead to distress and avoidance of self-care activities. This often manifested as a deliberate avoidance of blood glucose monitoring as a way of exerting control and reducing distress. For example:

When I do comply with what I‟m supposed to be doing, and that‟s like taking my blood, I get really distressed because when I see that I‟ve got high blood sugar levels, I don‟t want to take them anymore, and that distresses me, because I keep to a good sugar-free regime. Now when I don‟t take my bloods and there are days, more days than not, then I feel really good. I feel really good and so I just don‟t want to know about diabetes and I just get on with life……So yes I do get distressed about it and my way of coping with it is to not even take a blood, yeah I just won‟t look at it because if I see how high it is it distresses me because I‟m thinking, I can‟t find a balance, what am I doing, and when I do get distressed I can go straight into a hypo (3, p. 11).

When the body did not behave as predicted and hypoglycaemia eventuated, some

participants expressed feelings of embarrassment and shame after having a hypoglycaemic episode in the presence of others, in particular at their place of work. Their embarrassment and shame was due to either behaviour changes associated with reduced cognitive function as a result of hypoglycaemia (e.g. confusion, aggression, lack of co-ordination), or

unconsciousness requiring emergency medical attention. Whilst embarrassment was expressed, participants also expressed frustration with what was considered an over-

reaction from others as they tried to show concern or support. For example this participant stated:

Another scenario, I was at work here, it was at a morning meeting and I had a hypo during the meeting, and then I just felt totally ashamed, after the admin staff had come and just think oh what an egg I am, and that makes yourself a little bit embarrassed because you know you‟ve got to turn up and face those people the following day … and its like oh yeah you‟ve got this

problem. My manager at work she sat down and talked to me all about it and did the whole touchy-feely thing, I was like harden up, it happens (14, p. 16).

Despite relentless attention to self-care issues, life events occurred and sabotaged their efforts despite best intentions. As has been discussed in the previous chapter, frustration ensues and exacerbates the need for constant vigilance which is not perceived to be normal.

Longing For Normality

Participants expressed a longing for normality in their life, defined as the absence of the daily requirements of diabetes self-care. The quest to function on a daily basis with the maximum degree of normalcy has been eloquently described by Thorne (1993) as having a major influence on the way in which people with diabetes may define themselves, organise their lives, and cope with the complexity of self-care. In this study, participants described resentment towards the daily requirement for structure imposed by diabetes as it

exacerbated their sense of abnormality, for example:

I‟m just struggling dealing with the stress and the emotional side of having diabetes. It‟s yeah at the end of the day I just want to be normal. Like I‟ve said to people time and time again I‟d be in debt for the rest my life if, if it meant being cured or not having to do the old injections and not being so reliant on having to check my blood glucose all the time. That‟s the thing you get sick of doing it and you‟ve always got to be prepared and have something on you and a couple of times where I‟ve been caught out (16, p.30).

I think that the nature of my life each day is different. Some people are very routine and that‟s their personality and I think they‟d be the perfect

diabetics, people that thrive on routine and order and sameness, like you know accountants. Accountants should be the ones that are diabetics, but I think that‟s a different personality, whereas I think for me I like the change

in the routine but it makes it harder to manage in a consistent way, managing diabetes (17, p. 8).

It sort of overtakes your world you know, your life a little bit and sometimes it just peeves you off and it‟s like oh, I‟ll just inject and not worry about it, do you know what I mean to get me through the day. (10, p. 12).

Participants attempted to accommodate the self-care demands and manage the requirements of their diabetes regimen to fit in, but the constant flexing and adapting to accommodate competing demands took precious energy and time and was not always sustainable. Even when going on holiday the need for forward planning led to frustration and presented challenges as participants and their family and friends desired spontaneity:

Well, there‟s the blood tests, always having to make sure that you remember to take your insulin with you when you go out, which sometimes doesn‟t happen, and then you‟ve got to make a trip back or else finish off early (1, p. 15).

It is – oh absolutely a drag yeah. Even though sometimes I‟ve got to eat because I‟m going to inject, sometimes I don‟t even want to eat, not even hungry. And probably one of the biggest inconvenience I think is I hypo quite quickly and so if I don‟t basically have an idea of what I‟m going to be doing for the morning, and people try to wing it with me, like we went away on holiday and you know trying to plan for the next morning – what are we going to do are we going to do something quite energetic or are just going to be lazing around for the day. They‟re like oh we‟ll just wing and we‟ll see what happens tomorrow morning. Well it don‟t work for me so I wouldn‟t inject (10, pp. 12-13).

So normality was perceived by participants as the ability to be carefree and careless. The opportunities for spontaneity, seizing the opportunities and being relaxed were not possible

hence normality seemed unachievable. Perhaps as a result some participants acted defiantly towards their diabetes presenting interesting contradictions as this defiance produced both positive or negative impacts on health activation, self-care and diabetes- related distress. For example, when a participant described being in control of their

diabetes, this did not necessarily translate into a high health activation level or achievement of ideal glycaemic targets. For these participants the belief of being in control of their diabetes and deciding when to pay attention to their self-care requirements was enacted in order to reclaim control over their life, thereby reducing diabetes-related distress and restoring a perception of normality:

Well living with diabetes like I said before, it can control your life, it can, but I don‟t allow it to control my life. And whether that‟s right or wrong, I‟m still around, I‟m still here, I‟m doing things that I like to do (3, p. 21).

Yep it does control my life, (laughs), or tries to and I try to ignore it. Put it that way. Well it wants a lot more attention than it‟s getting (laughs).So, if it could talk it would (10, p. 17).

I think it probably should control my life more than I let it. I think that‟s the problem we‟ve just been discussing. Like when I‟ve been single over the last five or six years, it should have been controlling my life and I haven‟t let it. I‟ve just led a pretty normal life eating anything, probably drank too much (5, p. 7).

Thus participants described a range of ways in which diabetes potentially controlled their lives, or aspects of it. As a consequence some behaviours were not always conducive to achieving optimal blood glucose levels, but rather aimed at maintaining a degree of normality and achieving a sense of being in control.

In Control

A defining distinction between participants with lower health activation and higher health activation scores in the quantitative analysis was that those with higher health activation scores expressed characteristics of positive internal locus of control. Those with higher health activation had incorporated diabetes into their lives in a way that it had its place, they paid it attention and felt in control. Diabetes was not controlling their life or defined as something they were wrestling with. Diabetes was not external to them but rather had become part of who they were and part of their life rather than their whole life, for example:

I think all diabetics are personally affected, we can‟t separate it because it is our life. And if we don‟t do the things that we have to do then, you know, there‟s only one way, you just got to exit don‟t you, and so if you just want to stay here a bit longer you‟ve got to control it. So I don‟t think you can separate your medical condition with your personal. No you can‟t because it‟s like half of your being alive (3, pp. 17-18).

I wouldn‟t let it control my life, wouldn‟t let it (laughs). No like I said earlier you know, if I‟ve got sports I don‟t mind missing a meal until after the sports and then doing my insulin after the sport, so I‟ll control it when I‟m ready (laughs) (14, p. 18).

I think if you let it control your life well you don‟t have a life really. No, and I would never let it. That sounds really, really harsh but no, I do not let it control my life and I will never let it control my life, although it is, you know it‟s a massive part of my life, it is not my life (18, p. 19).

This sense of being in control was expressed by participants most commonly with respect to their belief in their capability to modify their treatment requirements to accommodate daily life events. These participants acknowledged their life stressors and competing

demands but had developed the ability and confidence to apply their diabetes knowledge to work around problems that arose and thereby integrate their diabetes and the self-care activities into their lives and various life events. They described being in control so that diabetes did not rule their life:

It‟s OK to say oh this chocolate cake is coming out – I‟m going to eat it anyway – OK well don‟t beat yourself up over it, eat that and account for it and the worst thing I think is to eat the chocolate cake and then feel like you‟re sneaking so you don‟t take extra insulin and you don‟t account for it, it‟s knowledge that OK yeah I‟ve done this, no point beating myself up over it, or my body by not accounting for it and not dealing with it (17, p. 23).

Oh, well I mean you don‟t want to let diabetes rule your life do you? So, if you want to lead a normal life you‟ve got to learn how to control it. Oh, yes I went through that. I was just, well I was testing and testing and testing, and if I had a low I wanted to hide, now I know how to cure that low with the glucose tablets and a sandwich, so I‟m more confident with that (12, p. 4).

Not saying manipulation is always that great but if I can get my blood sugars down or up I know that I can, if I‟m home sick and I have high blood sugars I can maintain highish blood sugars without making myself go low. If I‟m, you know if I‟m going out or doing something I know how to

maintain that so that I don‟t go high (18, p. 32).

But I have learnt over the years that if I forget my insulin it‟s not going to make that much difference. Your glucose levels will go up, but if you get home at a reasonable time and make an adjustment (laughs) then you can handle it. In other words you learn to cope. But even so, you‟ve got to be aware that you‟ve made an error and you‟ve got to take the appropriate action (1, p. 15).

So it is apparent that adequate knowledge of diabetes management and how to apply this on a day to day basis supported people to achieve and maintain a higher level of health

activation. With increased knowledge came confidence and with confidence these

participants felt more able to adapt to day to day challenges. This ability to adapt provided a greater sense of, or possibility for, feeling in control. Control has thus far been described in the context of the individual and their expressions of frustrations with lack of control over their body, longing for normality and being in control of their diabetes amidst life events. Themes pertaining to control were also evident within interpersonal relationships, in particular within the therapeutic relationship.