quality of life

[Gingergus]

I'm very low at the moment because there's not much that Ican do. I long to be out on a clifftop walking. I'd like to be anywhere other than my living room ! I can't drive, I can't walk far, I have zero energy.

How do others make better use of their lives when this illness makes you feel so awful a lot of the time.

I'm good at arty things, but I find it hard to change my lifestyle from busy and active to sedentary activities.

[SunshineM]

Sending you best wishes. I can so relate to what you say. My oncologist said I bet you keep busy and I thought no, after having been very busy it's difficult feeling I was doing virtually nothing.I'm not arty but my daughter is and makes beautiful journals about her daily life. I wonder if writing, drawing, sketching about happy memories of cliff walks that you have done might help.

I love gardening but don't have the stamina, but I planted a window box and enjoy seeing it change, I planted some cosmos from seed, I'd forgotten to label it, so have watched these tall feathery stems produce flowers. I know I'll have a gap over Winter, but I'm planning to plant some Spring bulbs that I can watch.

My daughter also has bird feeders on her window and has a regular stream of birds to admire. Might you be able to do something like that to feel you are outside, beyond your living room.

Kind regards

[Gingergus in reply to SunshineM]

Thank you. It's actually helpful to know that I'm not the only one feeling a bit helpless. In fact my daughter and I have been collecting big pots from freecycle and I can work on them at a comfortable level so I hope to have a wonderful display of spring bulbs at least ! Easier than heavy digging etc. I like the idea of attracting the birds to watch too - definitely doing that. You have a lovely name - sunshine - just what we all need ! xx

[JanetteR57]

sorry to feel you're feeling down but it's understandable. even if walking is too much, moving about does give energy even if it takes some effort to do it... and can lift low mood too. There are also exercises/activities that can be done in a chair or if confined to the house - as they're important to recondition/develop the lungs.

asthmaandlung.org.uk/living...

I initially wrote short letters to a few friends in response to Xmas cards updating them about my situation and used the walk to the postbox as a measure of how I was improving my stamina/recovery after open surgery to remove half my lung. even if I had 3 notelets to post I made 3 separate trips (usually a 6-7 minute round trip but the first time took half an hour with multiple stops) but gradually improved then extended it to walk around the block then into a park at the back of where I live. I'd never been in it but watched the seasons change with walking around it that spring. As already suggested, planting things - bulbs, seeds, veg, herbs and watching them grow can be satisfying. cooking from scratch, baking may also help keep mind/body occupied and have you standing rather than sitting all the time. reading, watching films, puzzle books, adult colouring books, craft of all types have helped many find a new creative outlet.

I was also told that yoga and pilates type exercises are good as they focus on breathing which takes the mind away from negative thoughts too .

Learning to adjust to a different life in the short term is important and rebuild strength - mental and physical - important for recovery. I was recommended books that I found quite inspirational - 'anti-cancer a new way of life' by Dr Servan Schreiber, ' cancer is a word not a sentence' by Dr Rob Buckman, and I also found it interesting to read the origins/history of cancer in 'the emperor of all maladies' book. I've since found books like 'being mortal' by Atul Guwande and Henry Marsh's books fascinating.

doing things like sorting out photographs into albums can revive memories, cataloguing books, records etc also a useful way to pass the time. I've found tasks like sorting out cupboards/wardrobes that I'd ordinarily consider a chore leave a good sense of satisfaction sorting out things for charity shops so others can benefit from things I no longer use.

hope you find a way to cope and improve your quality of life. tale care