**4. Losing control of the body's** *taken-for-granted* **functions**

When our body works well its functions and understandings are *taken-for-granted*. For well people, the habitual functions of breathing, walking and moving the body in meaningful ways are unconsciously undertaken as the body moves purposefully towards its tasks. The existential philosopher Merleau-Ponty notes the sudden awareness of our bodies as taskorientated when function is disrupted:

*"I am conscious of the world through the medium of my body. It is precisely when my customary world arouses in me habitual intentions that I can no longer, if I have lost a limb, be effectively drawn into it, and the utilisable objects, precisely insofar as they present themselves as utilisable, appeal to a hand which I no longer have… Our body comprises as it were two distinct layers, that of the habit-body, and that of the body at this moment..." (Merleau-Ponty, 1945:1962)* 

Sputum production, uncontrolled coughing and wheezing and urinary urgency (Avsar & Kasilkci, 2011, Gullick & Stainton, 2008) are examples of changed body behaviours that signify a loss of control, displaying the body in socially unacceptable ways. Terry (77 yrs) confided, "*I cough, and I cough, and I cough and… all of a sudden it's on the table. It just comes out, no control "* (Gullick & Stainton, 2008). Because these behaviours draw attention to the person's unpredictable body, they detract from enjoyable participation in family and community activities. This has been described as the 'stigma' of COPD where the illness is visible, and is associated with disability and lack of control (Johnson et al., 2007). The visibility of the illness challenges the person's personal integrity and sense of effectiveness (Leidy & Haase, 1999, Gullick & Stainton, 2008). Marcia explained of her husband Pete (66 yrs): *"He goes to the club for the raffle …and meets a chap he went to school with, just for an hour and a half… But he's on to that oxygen the minute he gets home. See, he's stubborn that way. He wouldn't dare let anybody see him using a bottle, or a wheelchair"* (Gullick, 2008).

Other common manifestations of the failing body in COPD are weakness and fatigue, pain, insomnia, loss of appetite and difficulty with mobility (Elkington et al., 2005, Jones et al., 2004, Gullick & Stainton, 2008, Seamark et al., 2004). Fatigue is strongly linked to levels of breathlessness and depression and has major consequences for functional performance (Kapella et al., 2006). Fatigue is responsive to improved rest and sleep; however, sleep deprivation is part of the experience of living with COPD and the resulting constancy of fatigue makes it difficult to maintain daytime motivation. Focussing on patient perceptions of sleep, the qualitative report of Shackell et al (2007) revealed almost all participants waking more than three times per night to pass urine, and disturbances from pain and breathlessness were frequent. Some people were isolated from their daytime support structures and so felt vulnerable during the night, fearing nocturnal breathlessness and panic and wondering if they would "see the next morning". Those with poorer sleep had poorer lung function and quality of life scores and were more likely to be anxious and depressed. Daytime sleep or sleep whilst in hospital was seen as safer. It is notable that some patient strategies for insomnia actually function as barriers to good sleep including the comfort-seeking activities of drinking tea, late night TV and daytime napping. Whilst people

bring respiratory distress under control. Breathing techniques such as consciously slowing breathing, diaphragmatic breathing or purse-lipped breathing are reported widely by patients as effective ways to help manage frightening breathlessness (Fraser et al., 2006,

When our body works well its functions and understandings are *taken-for-granted*. For well people, the habitual functions of breathing, walking and moving the body in meaningful ways are unconsciously undertaken as the body moves purposefully towards its tasks. The existential philosopher Merleau-Ponty notes the sudden awareness of our bodies as task-

*"I am conscious of the world through the medium of my body. It is precisely when my customary world arouses in me habitual intentions that I can no longer, if I have lost a limb, be effectively drawn into it, and the utilisable objects, precisely insofar as they present themselves as utilisable, appeal to a hand which I no longer have… Our body comprises as it were two distinct layers, that of the habit-body, and that of the body at this moment..." (Merleau-Ponty, 1945:1962)*  Sputum production, uncontrolled coughing and wheezing and urinary urgency (Avsar & Kasilkci, 2011, Gullick & Stainton, 2008) are examples of changed body behaviours that signify a loss of control, displaying the body in socially unacceptable ways. Terry (77 yrs) confided, "*I cough, and I cough, and I cough and… all of a sudden it's on the table. It just comes out, no control "* (Gullick & Stainton, 2008). Because these behaviours draw attention to the person's unpredictable body, they detract from enjoyable participation in family and community activities. This has been described as the 'stigma' of COPD where the illness is visible, and is associated with disability and lack of control (Johnson et al., 2007). The visibility of the illness challenges the person's personal integrity and sense of effectiveness (Leidy & Haase, 1999, Gullick & Stainton, 2008). Marcia explained of her husband Pete (66 yrs): *"He goes to the club for the raffle …and meets a chap he went to school with, just for an hour and a half… But he's on to that oxygen the minute he gets home. See, he's stubborn that way. He* 

**4. Losing control of the body's** *taken-for-granted* **functions** 

*wouldn't dare let anybody see him using a bottle, or a wheelchair"* (Gullick, 2008).

Other common manifestations of the failing body in COPD are weakness and fatigue, pain, insomnia, loss of appetite and difficulty with mobility (Elkington et al., 2005, Jones et al., 2004, Gullick & Stainton, 2008, Seamark et al., 2004). Fatigue is strongly linked to levels of breathlessness and depression and has major consequences for functional performance (Kapella et al., 2006). Fatigue is responsive to improved rest and sleep; however, sleep deprivation is part of the experience of living with COPD and the resulting constancy of fatigue makes it difficult to maintain daytime motivation. Focussing on patient perceptions of sleep, the qualitative report of Shackell et al (2007) revealed almost all participants waking more than three times per night to pass urine, and disturbances from pain and breathlessness were frequent. Some people were isolated from their daytime support structures and so felt vulnerable during the night, fearing nocturnal breathlessness and panic and wondering if they would "see the next morning". Those with poorer sleep had poorer lung function and quality of life scores and were more likely to be anxious and depressed. Daytime sleep or sleep whilst in hospital was seen as safer. It is notable that some patient strategies for insomnia actually function as barriers to good sleep including the comfort-seeking activities of drinking tea, late night TV and daytime napping. Whilst people

Avsar & Kasilkci, 2011, Cicutto et al., 2004).

orientated when function is disrupted:

continue with low expectations for a good night's sleep and remain physically inactive, they remain prone to sleep problems (Shackell et al., 2007).

Anorexia & weight loss are found amongst many COPD sufferers and are associated with worsening breathlessness (Seamark et al., 2004, Jones et al., 2004). The study of Odencrants et al (2005) focussed on the experience of meals and their findings noted a number of barriers to sustainable eating. The problems began in obtaining food, with difficulty parking, breathlessness during shopping and difficulty transporting heavy groceries being contributors. Some people experienced physical challenges when preparing food, particularly if they were rushed, whilst others found it difficult to tolerate cooking odours. Some chose to smoke instead of eat.

The attraction of food is sometimes reduced due to a loss of taste sensation. Fungal infections or a dry mouth resulting from the use of puffers can make chewing painful. Coughing before or during meals can tire the person and reduce the focus on the meal, making food a real challenge during exacerbations (Odencrants et al., 2005). Keith (73 yrs) defended his poor eating to his wife Marcia, *"Do you want me to eat or do you want me to breathe? I can't do both together*!"(Gullick, 2008). People experience bloating, feel full before finishing meals and are often embarrassed by the food left on their plate. They report having their intake watched during mealtimes by family members and experienced feelings of failure, anger or sadness when they are not able to eat (Odencrants et al., 2005).

Eating smaller amounts more often and planning a number of meals in advance on a 'good day' is a common strategy to improve food availability and intake. Of concern was that Odencrants' et al's participants thought positively about their low body weight and this may be problematic given the association between low body mass index and higher mortality in COPD (Yang et al., 2010).

Pain is commonly reported in qualitative studies on COPD (Halpin et al., 2008, Elkington et al., 2005, Shackell et al., 2007) although authors do not tend to elaborate on the nature or location of pain. It is reasonable to assume this pain may in some part relate to reduced mobility, and perhaps, to age. Boueri et al (2001) noted that whilst their participants reported pain, levels were similar to healthy individuals in the community. Pain is particularly noted for people with COPD in the last year of life (Elkington et al., 2005).
