I ve been put on oxygen long term starting with 15 hrs then 24 /7 I know there are lots of people have to do the same and I would like to know how you felt when it happened. My mind is working overtime thinking all sorts of worrying things the oxygen nurse is very helpful and did admit she sees that many on it and forgets to reasure the patient as so many get used to the relief it can bring.
The main problem is the noice from the consentrater I live in a flat with my husband who is finding it keeps him awake and the lady in the flat below can hear it so that is just making me feel stressed even though it's not my fault. I would appreciate tips to solve this Airliquide say it's the only one on the NHS .. I was on ambulatory oxygen the past 12 months but a chest infection has made IPF worse .and my sats are dropping a lot. Thanks
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imelda16
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Ooooh don't be depressed, I'll get back a bit later,I must go and make a bacon sandwich or I'll be depressed. The maim thing is we're still alive...life is good.
Are you a tenant, can you request a move to a ground floor property.
Amazon do a anti vibration mat, £12/£24.
As you have already had the experience of using oxygen which I regard as a extra medicine you are just taking an extra dosage, I am only on Ambultory oxygen but others will be along with there experience of LTOP.
Imelda I can totally imagine how you must be feeling, each step we take along this road we travel gives us some pain knowing that we have taken another step and we worry about what lies ahead. This is only natural, and I think all of us appreciate how you feel.
But you ARE still here, and you still have a long way to go, and I always find it amazing how we do in fact find that we can still enjoy our lives, and its not always as bad as we feared it would be.
I hope you find solutions to your 'noise' problem, I feel sure that you will.
You feel understandably down at the moment, and I wish there was some way I could make that 'low' feeling go away. But it WILL go away, as you find ways to manage your new health situation
I am sure that soon others will be on here, to help you to cope with the practical ways that you can improve things for yourself
You can be sure that we do all know how you are feeling and most have in fact felt exactly the same at different times as their illness progresses.
I have met many people on Long term oxygen who still have very full and active lives, and in fact they say being on the oxygen has made their lives better as before they struggled
Hi Imelda, I have been on oxygen 24/7 since last March, it has made such a difference to my life, I use it all around the house and I can do things comfortably (if slowly) I have not been able to do for a long time, ie: help changing the beds and showering is so much easier, cooking is a bit of a pain because I have to keep taking it off but you soon get used to it.
I was already on ambulatory oxygen and that also makes a terrific difference when I am out and about.
When I was first prescribed it I was very down, thought this was the end of my life, but in fact it has improved it considerably, I do moan about it sometimes but I would be lost without it.
Your reply is really helpful it is a case of getting used to using all the time and I will have to adjust. I had just mastered ambulatory in my life and this just seemed a shock so soon. I kept thinking the worst about my health which doesn't help I will post when things seem to improve and I'm more cheerful .
Hi Imelda, I can so relate to how you are feeling right now. I have been on 24/7 oxygen for 2 years and still remember how depressed it made me. I moved quickly from 16 hrs to 24 hours and I thought I'd never cope. I needed 5lpm and was given 2 machines which link together to provide my oxygen. I am lucky to have a spare room for the noisy beasts.
Not sure if I can advise re noise in your flat. Try not to beat yourself up about your neighbour - it's not your fault.
Remember to focus on your need for this oxygen. 2 years on, for me, means I can still have a life. Just needed to accept the adjustments. I can go out with ambulatory oxygen and a mobility scooter/ wheelchair so my hubby and I can walk together and shop. I can go to the theatre, out for meals etc. I an go on holiday. Had to give up foreign holidays only because I couldn't be bothered. Last September we went to a lovely hotel in Devon and the oxygen was all arranged by my provider foc.
It is a huge shock when it happens and you do need time to mourn your old life, but then you start to plan moving forward.
I promise you all I will keep up with a progress report in a month and THANKYOU for help lifting my mood it has been lower than I've been since diagnosise and I do so want to adapt as many of you have .xx
How did I feel completely depressed I cried for days.
I had all the same fears as you even the noise of the concentrator it's ended up in the front bedroom on it's own and you sort of get used to the noise. Now it's my friend my security, I know it's protecting my other organs and I wouldn't want to be without it, I don't even notice if people are looking when I'm out and frankly I don't care. But I have to say people have been very kind.
You'll get used to it, and realize how much easier it will make your life. Good luck
When I was moved from ambulatory oxygen to home oxygen I was elated. At last I didn't have to struggle to breathe any where near as much. I had far fewer panics just by knowing it was there. Not that oxygen solves shortness of breathe, only sitting down and calming down with slow deep breathing solves that. The mental prop of its existence made me more relaxed.
Yes the machines are jolly noisy. My was placed on a carpeted surface but it was not long before we got a pair of out car mats and placed these under the machine. As these are quite thick carpet on a dense rubber backing to make the car cabin more quiet they helped a lot. The machine is still noisy though. I don't think you will find one that isn't. I have had 3 different machines.
I live with my wife and it does not keep her awake. Nor my night carers or me. The machine is right outside the bedroom doors. One just gets use to it. As for your neighbour all I can suggest is that you politely and calmly explain that the noise is caused by your oxygen machine which the NHS have diagnosed you as needing to be able to live and that as you prefer living to dying you cannot turn the machine off. I feel sure that she will stop complaining once you explain.
Hi imelda, I've been on oxygen for 4 years now and I am a total fan. If it wasn't for oxygen my life would be so much worse and personally I am so very grateful of being able to have it.
If your neighbor is complaining at the noise then she is way to selfish to be worried about, you need it for your health and that has to come first.
You'll soon get through this period of adjusting to something new and like me you'll be forgetting to switch the concentrator off when you go out as you won't hear it any more.
I too am on oxygen 24/7 and feel it was the best thing that happened to me. Prior to that I was getting infection after infection followed by heavy doses of antibiotics and steroids. I was feeling ill for most of the time but oxygen has made a huge difference to my life. I have a heart problem as well as COPD and take various medicines but I'm still able to go out with my portable cylinder and of course have my concentrator by the front door of my house. You need to put some insulating material under the machine Imelda. It needs to be able to support the machine but be soft enough not to transmit the vibrations to the floor.
My Mam, God bless her, used to tell me when I was a child. "Do your very best, that's all you can do". I would say the same to you, give it your best shot with the machine then carry on and live your life.
Hi Imelda,I,m not on oxygen yet,my nebuliser is very noisy but I need it to survive so it,s tough on those who don,t like it.They should try living our lives and see how they would cope.It is purely selfishness and ignorance on their part!Regards D.
Good Morning Imelda, I can so relate to your depression and I only care for my husband. When he was prescribed oxygen I was totally devastated that really thought that was it - the downward spiral. How WRONG could I be - it has given him a new lease of life and we can even go out in the this cold weather. It means he can actually walk to the car! Please dont worry about your neighbour. It might be worth a call to the helpline, the nurses might be able to advise you and help to put your mind at rest ..... 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. Please stop thinking about others - they will learn to adapt just as you have to - it is more important that you are given time to come to terms with this new way of life and learn to look forward. Wishing you a peaceful happy day with lots of adventures to come, lots of love TAD xx
I have read all your comments and it has lifted the doom and gloom I was feeling . Today I went with my husband to the supermarket as I do normally with portable , my kids took me for a meal Saturday and I felt o k dithering and shaking seems to have gone the more oxygen I've used since Wednesday. When I started the chest infection I had on and of since September seem to have finally settled down all the antibiotic and steroids finally helped but I really thought it was the end and I don't usually feel like that I'm more laid back and I'm so grateful to share this and know you all understand xx
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