Think Fungus: Think About the Impact on Patients Lives (Friday)

Diary of Jill who lives with aspergillosis, in her own words.

Friday

Today is a good day got up did all my medication and here I am at 10.30 getting ready for a day of card making. Just had a phone call and my car should be back today (yippee) found the hire car not the most comfy with all my screws and things in my legs.

Today I thought I would write a little about coping. I have always have had breathing problems so don’t really know anything different but that doesn’t mean to say it is easy. I had a career in banking for 20 years but there was definite discrimination as I quite often did jobs that I wasn’t paid for and I remember mentioning this to my Manager and the answer was they were worried if I was promoted it would put extra stress on me!

Anyway, since my health has got worse I find that I set myself little challenges nothing too much but little goals. My hubby is at home all the time now as he got made redundant at the end of last year and life is so much easier for me and even though I thought we would drive each other mad it is working well. He understands that I still must do things from time to time even though he quite often tries to do it for me.

I have bad days when things get too much and I take myself off to my craft room sometimes for a little cry but quite often just to keep busy. Now my car is coming back my challenge this week is to go to a lovely ‘pick your own fruit’ place. Martin will do most the work but hopefully I will be able to pick the runner beans, peas which hopefully be on canes. He can do the strawberries.

It is important to do things for me also so I tend to make a list and it feels good to cross things off. When I was in Brompton Hospital last year I went to a talk about energy saving which told us to make a list and not go mad if we are feeling well and I think it helps.

Also music always lifts me – one track James Taylor Up on the Roof always helps. Perhaps we should develop a playlist! 

Small things can send me over the edge – the car breaking down and being stuck at the side of the road with crutches is not nice and when I got home it took all day to sort myself out – my dad had a saying ‘Catch yourself on’ and that resonates in my head from time to time. If any one else has ideas please post. Keep well. x

NOTE these comments are taken from a series of posts made on the National Aspergillosis Centre Facebook Support Group at https://www.facebook.com/groups/aspergillussupport/ This group is a very active collection of people who have aspergillosis. There are people in the group from all over the world, the support they give each other is amazing.

Editor-in-Chief , National Aspergillosis Centre
Editor-in-Chief, Research Associate for the National Aspergillosis Centre and PPI Lead for Respiratory Section of the Manchester Biomedical Research Centre