Hi all fellow lungys, since being diagnosed with advanced interstitial pulmonary fibrosis, back in January, I have had to have my oxygen levels readjusted, so now I am at 15 litres per min while moving about, but I sleep so much, everyone says my body needs the rest. But even now I have no energy, or want to do anything, even my model railway is suffering from lack of attention.
Has anyone else have the same problem?
The nurses say it's normal, but it is getting me down. At rest I am at 10 litres per min.
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Oldspark
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Hi Ernie, it must get you down to be sleeping such a lot but you can only do what your lungs allow. If you can spend some time on your railway then great. It’s certainly very impressive.
Thanks for your reply, I guess I will try used to the fact that I am not getting any better, as you know when I first joined this forum, I was able to do bits and pieces to my model railway, but I cannot walk down the garden without stopping a few times, and that's on 15 litres per min,, then I have to sit down for half an hour, so nothing gets done.
I am fortunate that my daughter and her husband live very close by, and come around to cut the grass and get our shopping. But most of the time I am a sleep, so I do not know she has been and gone.
Love your railway model Ernie. It must have given you hours of pleasure building it. I tried to get my son interested in building model railways when he was young but he preferred to have train ‘crashes’ so I gave up in the end.
I’m glad to read your daughter and son in law are close by and help you.
Ernie,do you have access to a wheelchair,maybe your daughter could at least push you down to the shed with oxygen in tow,it might just give you that little bit of extra energy to spend a little time on your lovely railway set up?even half an hour would be enjoyable time inbetween those naps.
Haven't heard from you for a while, or did I miss your posts while asleep 💤
I do now have an electric wheelchair, but the cylinders that I have, only last a very short while about 3/4 hour it's a pity my now two concentrators do not reach as far as my summer house, (the two are in tandem, to give me the amount I need) I do have my original concentrator in the summer house, but it only delivers max of 5 litres per min, so only suitable for sitting down there and enjoying a bit of music and reading railway modelling magazines and dream about another layout🚂
Anyway take great care from the beautiful county of Essex.
Fear not Ernie you haven't missed much,my posts normaly send people to sleep anyway.
I do wish i lived closer to sunny Essex and i would come down and rig your double concentrator up in the summerhouse.model railways have always fascinated me and yours is no exception.
I was the same, and wrote down all the questions that I wanted to ask, but when I got to the respitory clinic, I realised that I had left my questions at home????
I was told most of the answers with needing the questions. But that was back in January, I was orinally on oxygen about 14-6 hours a day, that has now increased to 24/7 and treble my original dose.
I have got used to it all now, it's the sleeping bit I cannot get used to.
Hi Oldspark, sorry I dont know enough about your disease so cant advise you, could it be that you are lacking in iron/magnesium? Do you have regular blood tests? Or is it just that your body is lacking oxygen that makes you so tired, it must be so frustrating sleeping so much. You need somebody like Skis to rig up your equipment. My uncle has a train set that runs around his garden and he loves it, it looks very similar to yours, lets hope the weather cheers up enough for you to get into the garden a little and you can enjoy your trains x
Hi Oldspark I'm quite new to this forum, just wanted to let you know I'm an Essex Girl and truly love my our county. Thinking of you, I love model railways and hope you get to have a go on yours soon. I also sleep a lot, usually with my beloved cat on my lap which is comforting. Take care and keep your pecker up (oo-er Mrs!) x
I'm sorry to read this. Your body is using up much, much more energy trying to get all the oxygen it needs. It's surprising how much energy we use with poorly lungs. I would say, find the time of day when you have the most energy, and use that time to focus on your railway. Then nap and try again. Sending you many good wishes.
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Dont panic.All I could think of was Corporal Jones.
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