Sleeping for England

[Oldspark]

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.

[Kristicats]

I’m not using oxygen hope someone here can make suggestions/ support.

Love the railway though you must have spent some hours on it! Great.

[Oldspark in reply to Kristicats]

Hi Chris

Thanks anyway for your reply, I have spent a lot of time on making it all up but my lungs do not allow me to do very much.

Ernie

Stay safe and well

[sassy59]

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.

Take care. Xxx😘

[Oldspark in reply to sassy59]

Hi Sassy

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.

Anyway take care and stay well and safe.

God bless you all.

Ernie

[sassy59 in reply to Oldspark]

Thinking of you Ernie and pleased you have family nearby who can help. Love and hugs. Xxxx💖😘🌈

[Gladwyn in reply to Oldspark]

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.

God bless Ernie x

[skischool]

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.

Best wishes mate ..Ski's and Scruff's

[Oldspark in reply to skischool]

Hi Ski's and scuffs.

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.

Stay safe and stay well.

Remember to join the team of LERTS

Remember your country needs you to stay ALERT.😂

Regards

Ernie

[HungryHufflepuff in reply to Oldspark]

🤔 Hi Ernie I hope you can get something sorted out with your concentrator or something to give you a bit more range 🚂

Wishing you all the best.

[skischool in reply to Oldspark]

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.

[Oshgosh]

Hi,it’s good to see you posting again.

M sorry ai don’t know as I’m not on oxygen at the moment.

I also have Interstital lung disease,have been referred for oxygen assessment,have to see consultant face to face in 3 weeks.

I’m trying to think what questions to ask.

It’s a shame you cant be getting to your model railway.

Take care

[Oldspark in reply to Oshgosh]

Hi OshGosh

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.

Any please stay safe and well

Ernie

[Oshgosh in reply to Oldspark]

I know. I forget everything.

[Izb1]

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

[Catnip]

Greetings

I use 5 lpm at rest, 10 lpm ambulatory and 15 for exercise (ha!) or exertion. Like you, I'm tired all the time.

My respiratory doctor said I should have a whole day in bed, every week. Yesterday, I did -- I slept most of the time and feel much better today.

Breathing takes up so much energy even when we're just sitting down. You might try the day in bed to see if it helps!!

Cheers

Catnip

[Oldspark in reply to Catnip]

If I went to bed for a day that might end up as three🤣 take care and thanks for the tip.

[Kimlu]

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

[Caspiana]

Hello Oldspark ,

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.

Cas xx 🙋🐕