The ups and downs of living with a chronic lung condition

‘Life is a minestrone’ seems to suit me at the moment.  One day I feel I can get on and do loads the next I am a wreck.

This past week I have had to have sit with ice packs on my elbow and take painkillers which I really hate doing.  I am not supposed to take ibuprofen because of asthma so they give me codeine which zonks me out.  The bruising is nearly gone now but still have a painful elbow and it is a bit swollen but I am getting there.  This morning I have woken up with tenderness across my sternum and ribs.  I tend to get this when reducing my prednisolone which I really want to be able to do.  Really fed up with the weight thing and watching my diabetes all the time.  Then we have the pollen.  I love seeing the sun out and watching my flowers grow but the eyes are just driving me mad.  Think I might be overdoing the eyedrops.  I think I am going to buy some Optrex and regularly wash the eyes to see if that helps.  Well whinge over!

Tomorrow I am off to Brompton to see my mouldy man and also will be meeting with a friend and having a gossip and cake.  We will have our own little Aspergillosis Trust Meeting – not too long though as our supportive hubbies will be there and we don’t want to bore them.  Anyway it will be great meeting up, I seem to do well when I have my appointments meeting up with friends.  Sad we are all duff but it is great talking to people that understand.

The Aspergillosis Trust is going well (well put it this way I am busy).  I have had a reporter get in touch and I am trying to get him to write an article about Aspergillosis so fingers crossed.  Also I have had a few replies no one has offered to be a Patron along with Liz Yelling but not giving up.  Then we are going to hopefully apply to be a charity partner with the Met Office.  On top of all that I am trying to get a bit of funding so we can do a campaign for the World Aspergillosis Day next year.  I have had a price list from TFL for advertising on buses and the underground and prices for lapel pins.  We were going to get some hoodies but I am not sure as they might work out expensive but it all depends on the funding.  Then to finish off I am making cards inbetween. As I said life is a minestrone!

Sorry – I surprise myself sometimes – the biggest buzzy thing I have ever seen has just decided to come into my craft room.  I can move quick sometimes.  Had to sit for a while afterwards to compose myself.  Looked like a massive wasp but I didn’t stay around to inspect it.  I threw the windows open, shut the door and waited for the buzzing to stop.

Well I intend writing more letters this morning before I am completely zonked out by the codeine.

Any ideas to help with the Aspergillosis Trust please let me know

Keep well x

card 1

4 thoughts on “The ups and downs of living with a chronic lung condition

  1. We all have our good and bad days. Touch wood in not doing too bad at the moment. I’m luckier then most I guess as treatments are never ending and sometimes a person does feel any better. How frustrating that must be for some people. Yes since having my lung operation in 2015 it stabilized my Aspergillosis. My last relapse was last November to January this year but all is good now with a new inhaler opening my airways. It makes life so much easier to breath freely with out a struggle. I hope before too long others will have their condition maintained and controlled to let you live your life’s to the max as we should.

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  2. You are so right Jacqueline and I am so pleased you are feeling not too bad at the moment. Long may it last. Sadly not everyone have good spells like us. One of the reasons we must fight to spread awareness with that hopefully more funding to find new treatments. Thank you for your comments and all that you do on the support groups. Keep well and best wishes to all your family.

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  3. Jill you are amazing do all of that for everyone with the charity stuff and stickers etc.
    I have asthma all my life and take Ibuprofen and dihydrocodeine for my arthritic joints but especially the knees with torn meniscus in both.
    I don’t know if it’s the condition but I’m feeling ill most days coughing like I’ve never coughed before which has worsened so much in the last 2 months but when I read your posts I think get off your arse Sally!
    A very inspirational story which I love reading and pleased you are having some good days. The very best of luck with all the work you’re doing and yourself & thankyou x

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  4. Thanks for your comments. Sally I enjoy the fundraising side gives me a purpose. There is no escape from this illness which I think is the worse bit. We have better days but I wouldn’t say we are ever well. I was so ill over Christmas Sally I did think what is the point of fighting but the support I received from everyone in the group just gave me that bit of inner strength to continue. I accept some have no hope that is another reason I try and spread awareness. Try and stay strong you are really going through it at the moment. Take care. x

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