**5. Loss of the body's spontaneity**

People with healthy bodies combine their movements and activities in a fluid manner. They spontaneously act in response to sensory stimuli, or to a perceived need to attend to a particular task, and this rarely requires a conscious appraisal of the body's capacity.

*"The body is polarised by its tasks, of its existence towards them, of its collecting together of itself in pursuit of its aims". (Merleau-Ponty, 1945:1962)* 

People with COPD lose this spontaneous application of the body to its tasks; in fact, a lack of forward planning can leave the person gasping for breath. Chris explained, *"… things you've done all your life, you don't think, and you go to do them again. Picking things up that I shouldn't pick up and carry".* Simple activities such as walking and talking become difficult to combine (Gullick & Stainton, 2009).

Psychosocial Dimensions of COPD for the Patient and Family 159

prolonged steroid use. Norman described changes to his wife Catherine (58 yrs), a once, striking woman who ran an exclusive boutique, *"She had this sort of wheezy voice, and she was* 

The net result of this changed capacity and appearance is that people lose a variety of modes of self-expression (Leidy & Haase, 1999). Andy, (57 yrs) explains: "*I had to give up sport, I'm a real sport nut. I had to give up walking… Of course sex was out of the question".* Each task is considered as to whether the reward, for themselves or others, will outweigh any distressing symptoms. If the real or anticipated discomfort is thought to be greater than the perceived benefit, that task will be avoided. Rewards include either personal pleasure and fulfilment,

Severe COPD sees people coming to terms with their diminishing ability to care for themselves. Early losses in independence may include difficulty with shopping or driving. As the disease progresses, people find that basic tasks such as showering and dressing may become insurmountable, making them feel almost child-like in their dependence on others (Gullick, 2008, Oliver, 2001, Barnett, 2004). Chris was sensitive to his wife's workload around body care*. "I'm nearly an invalid, aren't I? She has to help me up the stairs… shower me… help me get dressed. Basically the stupid things I should be able to do myself"* (Gullick, 2008).

This loss of independence with self care is an enormous threat to people's sense of hope (Milne et al., 2009). Showering causes particular problems because of the effect of steam on breathlessness. Pete explained, *"I panic a little bit when I get in the bath or shower, and then I've got to get out and get dried up. I'm pushing for my breath, … and I dry one leg down to my ankle and …stand there and hang on to something until I get my breath and then I put the other leg up".*  Lifting arms to wash the hair, or bending to dry the feet are movements that cause considerable restriction to breathing, and so may be avoided. For people who live alone, this loss of self care may herald their movement into residential care. For people with family carers, it may alter the existing family relationship dynamics (Barnett, 2004, Gullick, 2008).

There is an important temporal framework to the experience of COPD with the visions of past, present and future selves being held in constant comparison to each other. Nicolson & Anderson (2003) describe how these gradual changes from independence to dependence lead to loss of self-esteem, loss of self-image and loss of power. The disease creates an otherness where the more visible 'medical self' is separate from the real self. Several studies reveal the nature of patient storytelling with past selves portrayed as athletic and vigorous, and present selves being barely able to walk (Bailey & Tilley, 2002, Gullick, 2008). Their future is seen in terms of loss: loss of anticipated retirement, loss of hoped for relationships with children and grandchildren (Nicolson & Anderson, 2003), and loss of 'possible selves'

This loss of independence and loss of family and community roles frequently lead to frustration, irritability and depression (Elkington et al., 2005, Seamark et al., 2004, Wilson et al., 2007). Those with advanced disease may see their life as meaningless. They communicate hopelessness, worthlessness and resignation and this can make death seem

or a task that is to the benefit or welfare of others (Leidy, 2008, Shackell et al., 2007).

*beginning to get hunched shoulders."*

**7. Losing independence with body care** 

**8. Changes in personality and mood** 

which are no longer conceivable (Gullick & Stainton, 2009).

Breathlessness requires the person with COPD to consider the task, the steps they need to go through to undertake it and their particular physical effectiveness on that day. They may need to research how far they have to walk, whether there may be stairs and whether a toilet is close. People need to allow more time in order to avoid having to rush or keep up. The use of oxygen bottles takes considerable planning in relation to the cylinder's duration and portability. Even just walking from one room to the next may require rest stops. Patricia (63 yrs) lamented, *"Coming out to the lounge room where the nebuliser is, opening the blinds and curtains, then sitting down to get on my nebuliser. I have to stop about five times just doing that".*

Attending to day-to-day activities means pacing the body and spacing out activities that tax the body's breathing. Pacing of movement and activities with frequent breaks and aligning activities into sequential rather than combined tasks allows the person to recover their breathing along the way. Because of the daily variability in symptoms, people may need to take on a flexible approach to assessing, on the day, outings they have planned in advance (Barnett, 2004). Those who adjust most effectively to their bodily restrictions *listen* to their body, plan, pace, prioritise and balance their activity with capacity on that day, and try hard to achieve a certain level of contribution within realistic parameters (Lindqvist & Hallberg, 2010, Leidy & Haase, 1999, Gullick & Stainton, 2008, Fraser et al., 2006).
