The PR course is finished and the results have been really good - my husband is not so sure but as he was trying to work full time and fit in the PR course (making time up afterwards) I am not sure I could have kept up the course. This time the venue had changed to a new sports centre - I am not sure who designs these places but they surely don't think about people who struggle to walk. There is a lots of disabled parking spaces at the edge of the car park - but the entrance is an enormous expanse of flags completely exposed to the elements on a slight incline - just perfect for COPD sufferers! To add to that the room used inside the building was at the far end - so another trek before you even got to the exercise room!!! As you may remember he had been prescribed oxygen for use during exercise and he has done that - I am extremely proud of him. (AND he started with a mild infection and was using antibiotics in the middle of the course). Having completed the post assessment he has been referred for an arterial blood gas test - though that was last week heard nothing yet! It has been recommended he uses his oxygen when we go out shopping etc.
Last Saturday was our first day with oxygen in tow! (We will need to speak to the provider though I know from your posts that there are better and smaller tank options). My youngest daughter 12 was clearly a bit worried and wanted to know if Daddy would sound like Darth Vader! NO!! Actually to be honest I thought it might bother me - I know that sounds silly but I thought I might be aware of people looking etc. BUT in reality I didn't notice anyone looking - probably because I was so pleased that he seemed to be coping better. My daughter did think people were staring but she is that age when she is very aware of other people. Funniest thing happened though - stood in the café queue (tea is essential when shopping!) and we noticed a chap we knew. Said Hi and continued on our way - he shouted back to my husband - "Whats with the oxygen?" - I answered "So we shop" TO which he replied with no embarrassment "You don't look as though you need it"!!!!! CLASSIC - ah well if he doesn't look as though he needs it, we wont bother using it!!!!
Anyway the point is - it really is not a big thing this oxygen use. It has a stigma - wish it hadn't but it has. The reality of going out with it is much much easier than the thought of it!
Hope you are all staying well and keeping away from the cold bugs! Lots of love TAD xx
Don't worry about how using oxygen looks. If it's needed, use it I say. I am on O2 24/7 and use Home fill bottles when out and about on my mobility scooter. Some people do look, especially children who are very curious, but I tend to find that most people are very helpful and go out of their way to help me if needed. I've had lots of chats with people, including children, explaining why I am in this situation, and what COPD is. I'm a very good ambassador for stop smoking!!! :o)
It's funny, it has never bothered me, but I know my husband was a little embarrassed when I first started using oxygen. Very few people stare, most are just too busy. One little girl asked me what the thingy up my nose was for. I told her it helped my breathing and she nodded, being satisfied with the explanation, but I thought her mother was going to have a stroke, she was so embarrassed! If people don't know you it does not matter. If they do, they get used to it.
As a new, tentative, ambulatory oxygen user I agree that, in many ways, the thought of it is much worse than the actuality. People do look - I probably did myself in the past, it is different so it draws your eyes.
I am 62, with bronchiectasis, and don't 'look' bad enough to be on oxygen - so I am told!
On my first trip out I kept my eyes to the ground so that I couldn't see if people were staring. Now I just look naturally at people, and smile! Quite unnerves the curious! I also find shop assistants more than willing to help if I ask - nothing is too much trouble.
However, I haven'y yet plucked up the courage to shop in my hometown!!! In case I meet friends?!
Now I can understand that - I know that it maybe different shopping closer to home or for example using it at work. I am sure it will get easier with time. TAD xx
Well done to all of you Tad, and never mind those who don't get what it is to be out and about and feeling better with oxygen. Pete does not use it at the moment but he has often had people say to him how well he looks. That is good but how else is he supposed to look? Stay positive and enjoy time spent out and about. Love to all, Carole xxx
Great news that himself is out with the oxygen -- it's an absolute Godsend, isn't it! The Freedom-400 tanks are a bit heavy at first, but the Freedom-300 -- the smaller ones -- don't last long (and cost the NHS twice the price of the 400s). I use oxygen on free-flow, so I only get about 1.75 hours unless I'm doing something very gentle (like a craft show!!), when I do use my conserver and so get 5.5 hours. That is when I sound like Darth Vader; so I say it, to save others from embarrassment. I also use "pursed lips" breathing so lots of people smile at me because they think that I'm smiling. It brings a bit of sunshine to everyone so I really don't have many hang-ups about going out with the tank on my back (I use a backpack so I have both hands free!).
My biggest problem with the oxygen is the smokers outside shops... who do move when I say I've got neat oxygen going up my nose The _best_ thing about ambulatory oxygen is that it prevents damage to internal organs and so extends life expectancy. Yippee.
Tell himself to keep up (a) the good work (b) the exercise (very important) and (c) the look of nonchalance on his face when he's out with his oxygen.
I've been on O2 24/7 since March this year , and now i have to use a scooter when me and my wife go shopping or go out for the day i felt a bit selfconcieous at first,but now no problem.It's important that you carry on a normal life as much as possible and do as much as you can.I use an Inogen portable oxygen concentraitor and i find that very good.I wish you and your husband all the best take care,
When I first started using oxygen it was winter do I always had a scarf over my nose but when the summer came I was very self conscious at first but now I just look back at people. What I saw the other day I just couldn't believe. I was waiting in my car for someone outside some shops when a man came out on a mobility scooter wearing oxygen and then proceeded to light up and smoke a cigarette just couldn't believe it
Well done to all you oxygen users. I am still at the stage where I look away from people who are on oxygen I am sorry to say, but that is because I have tears in my eyes. It frightens me that I may end up in the same situation. Is this just me? or do others feel the same?
Love to you all and please forgive me for being so selfish. I know it makes you feel better.
Doesn't make you selfish. I always say smile or say hello because I know it will be me one day and I would like people to smile or say hello to me to help me overcome the feeling of isolation.
It is stitch and I find some peoples attitude upsetting. Sometimes it seems to say you deserve it for smoking. I don't need to be told that. I know it. Although working with carbon fibres for 10 years hasn't helped. It is a lovely friendly club here.
I am on oxygen 24 x 7 I was the same when I first went out with my bottle on my back. I was concerned that I might be turned away from supermarkets so I called them and had great response say no problem at all. I have found that whilst shopping people are more responsive to help you. People ask me if it is heavy because I find it more comfortable carrying it on my back, my reply is always the same, It is far lighter than having my wife on my back. Some ask if I was down the mines or did I smoke. The answer is many year ago I was a baker with a combination of flour dust, years of smoking and being born 62 years ago with double pnumonia in each lung did not help matters. I feel that I have got a string of serious medical conditions and I treat each day as it comes. Best of luck to you both. Berwick xx
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