Our members used the meeting time to talk about the problems of living with COPD and the effect it has on their lives.
- we usually don't look ill and so people don't understand why we need to lean and rest, sit for a while, use a Blue Badge parking space etc.
- so many inhalers make life confusing ie what each one does, how to use it properly. It was decided that the pharmacist should always instruct how to use each inhaler.
- having a wash/bath/shower/cleaning teeth/hair washing can be exhausting.
- the speed of the onset of an exacerbation is frightening. There maybe a couple of days of feeling generally under the weather, and then WHAM ! it's like walking into a brick wall. Suddenly your chest is tighter and you can't breathe. We all need the security of rescue meds in the home.
- often just too exhausted to eat, think or make simple decisions
- arranging outings etc has to be carefully thought out as simple tasks take a long time.
- getting exhausted just going to the toilet - bowel movements being especially difficult.
- a carers concern was when to call in which service - ie respiratory team, the GP, dial 111 or 999