Current Sleep Behaviour

For all the participants in the NEB group, bed time and sleeping were difficult

experiences. Most individuals struggled to get to sleep and viewed going to bed as an unpleasant experience. Typical general comments included:

„I just dread going to bed, I don‟t know why but I think it‟s because I don‟t fall to sleep

straight away like I used to‟. (DW039)

For some individuals concerns were related to emotional distress:

„So I‟m constantly catching up on sleep all the time. And then my body gets into a routine..like when I want to go to sleep I can‟t. I‟m that wound up you know‟. (JP017) „I‟m lying in bed and I‟m knackered, but I just can‟t get to sleep so I think that‟d be when I‟m thinking about all the stuff the most, so that‟s probably why I can‟t get to sleep‟. (KR 009)

„I cry before I go to bed…my eyes are burning because I‟m tired. I don‟t want to be tired. If I couldn‟t be tired I‟d be happy. I just want to stop being tired‟. (MC024)

For 2 individuals the concerns were more physical. One young male adult was frightened of physical violence from his older brother while he was asleep and for one single mother, night times were particularly fraught as she was on constant alert for her disabled son who suffered from episodes of apnoea:

„They had a meeting in the house with a family support worker and his boss and I said all I want is one night a week for someone to come in and take my role, so I can go to sleep like a normal person, which doesn‟t happen very often‟.(AC 023)

Even those who stayed up very late eating before going to bed, still perceived getting to sleep to be a struggle and had become used to delaying their bed time until later due to the frustrations of not being able to sleep if they went to bed earlier.

„Occasionally as I say, sometimes I just have to knock myself out (with sleeping tablets) and sometimes that‟s the only way I can do it. I literally have to „mong‟ myself you know – I take a stronger dose than normal and I feel sleepy and I can get to bed a lot easier‟. (JMC 068)

107 Unsurprisingly, only a very small number (n=4) felt their subsequent sleep was of good quality and all these were individuals who stayed up very late before going to bed. One individual went long periods without sleeping at all, preferring to work back to back double shifts for several days on end and two individuals had reversed night and day time completely. The majority of

participants generally described having short periods of fitful sleep from which they were easily roused; something they found extremely frustrating and debilitating:

„I struggle to sleep. I‟m very, very lucky if I can get four hours straight sleep. You know, I‟ll look on that as being a good night‟s sleep if I can get four hours. I mean the slightest thing, I mean believe it or not half past one this morning two kids playing football, kicking a ball against the wall.‟ (AB007)

„.. sometimes I just have periods where I can‟t sleep all night, so I just stay awake and toddle round the flat and things‟. (SK040)

„That‟s probably the most annoying thing in me at the moment is not getting to sleep. It just does my head in, why can‟t I just go to sleep‟. (GD015)

„One thing I do suffer with is sleep. It‟s a real struggle. You just get batty then and it‟s not good.‟ (NC026)

As well as eating, participants also resorted to a range of activities to either distract themselves or help them return to sleep (Table 26). Computer-based activities included games, chat rooms, on- line gambling, crib and searching the family tree.

Table 26 - Table of activities undertaken either before bed or during the night by the NEB group (n=30).

Activity before sleep and during night No of participants undertaking the activity

Watch TV/DVD 16

Read/puzzles 7

Computer 9

Radio/Music 2

Late night shopping 1

Drink alcohol 1

Paperwork 1

As a result of having a poor night‟s sleep, getting out of bed in a morning was generally a huge struggle, with those who had the opportunity to do so, sleeping in wherever possible:

„I‟m tired beyond exhaustion, even sometimes when I get up, I‟m tired beyond exhaustion‟. (KMC049)

108 Eleven of the participants resorted to sleeping in the day, either in the afternoon, or when they got home from work and struggled to stay awake when in work. This day-time sleeping often created problems with sleeping the night after, resulting in a vicious circle of sleep deprivation:

„It depends, sometimes I‟ll go to bed and I can‟t sleep because I‟ve slept all day I think, although I‟m tired when I wake up I‟m exhausted all the time‟. (RC052)

Frequent attempts were made by participants to change their eating and sleeping behaviour and are described in Table 27 although most found any changes they made unsustainable.

Table 27 - Strategies used by NEB group participants to change their eating and sleep patterns

Attempts to change sleep/eating pattern No of participants undertaking the activity

No attempts to change 4

Weight loss/sleeping tabs 4

Sleeping tablets and change sleep routine 4

Healthier foods in fridge 2

Change sleep/wake times 2

Sleeping tablets and change eating regime 1

3 meals a day 1

„I was hoping that, or I‟m thinking, OK, let‟s get meself into a routine. Breakfast, dinner, tea - don‟t skip them, breakfast, dinner, tea. And maybe after a few weeks or a month or two, the night time eating or the hunger, cos I‟ve changed me body clock, might stop‟. (MJ084)