**3. Loss of** *taken-for-granted* **breathing**

Breathlessness is at the forefront of the experience of COPD, and breathing becomes a conscious focus of the person's life. COPD has been described as "a story with no beginning" (Pinnock et al., 2011); the changes in breathing are so slow and insidious that for a long time the decline is normalised; put down to getting older or being less fit. Eventually, the breathlessness begins to impact on the person's ability to conduct their day-to-day activities and is accompanied by other respiratory symptoms and poor exercise tolerance. Petra (63 yrs) had severe COPD before she sought advice from her doctor: *"… to go from my bed to the lavatory and back, I'm huffing and puffing. I thought 'This can't be right' ... I get out of breath all the time".1*

Distressing breathlessness can be precipitated by certain body positions, by activities such as walking and climbing stairs and by extremes of emotion. Environmental triggers such as excessive heat or cold, smoke or perfumes exacerbate breathlessness and people may need to anticipate and avoid these triggers. This avoidance of the triggers of breathlessness can isolate people from locations and activities that once that once afforded them pleasure (Gullick & Stainton, 2008). Chris (67 yrs) explained: *"There's lots of things I'd like to do but I just can't… Get out in the garage, make things. Well, I went out the other day to try and sand down our cutting board …there's all the dust, and … forget it!"*

Breathless people experience good days and bad days and this means that despite planning ahead, a bad day may rule out hoped for activities. Certain times of the day can be more problematic, with breathing often worse in the mornings, coinciding with the need to clear sputum and the need to attend to washing and dressing, and at night interfering with sleep. Certain times of the year can also worsen breathlessness due to extremes of temperature (Barnett, 2004). Williams (2011) reported that the person's perception of air movement made a difference to breathing, with fresh 'outdoor air' being easier to breathe.

Acute breathlessness is associated with panic, fear of suffocation, and fear of dying during an attack. People feel helpless and out of control of their bodies at these times (Williams et al., 2011, Avsar & Kasilkci, 2011, Elkington et al., 2005). Strategies can be taught that help

 1 Any unreferenced participant quotes in this chapter are sourced from unpublished interview data from research reported in Gullick (2008). All names are pseudonyms.

Psychosocial Dimensions of COPD for the Patient and Family 157

continue with low expectations for a good night's sleep and remain physically inactive, they

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.

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

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

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).

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

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

*"The body is polarised by its tasks, of its existence towards them, of its collecting together of* 

particular task, and this rarely requires a conscious appraisal of the body's capacity.

*itself in pursuit of its aims". (Merleau-Ponty, 1945:1962)* 

failure, anger or sadness when they are not able to eat (Odencrants et al., 2005).

remain prone to sleep problems (Shackell et al., 2007).

Some chose to smoke instead of eat.

mortality in COPD (Yang et al., 2010).

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

(Gullick & Stainton, 2009).

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