I find it embarassing to my adult children and my friends. They reassure me that I dont but still feel inadequate.
Hello Shannon
I am not on oxygen but I have met many who are.
Having a chronic illness brings on a variety of psychology, isn't that so? Each of us feel and think in several ways. And one of the ways we may feel, is being 'inadequate' as you say. Not being able to 'measure up' to others who are able to do, unlike those of us who are ill.
I would like to ask a question of you.
Do you consider someone who has diabetes inadequate? Or would you label someone who has depression inadequate?
I do not.
And I would not label you as being such for having a chronic illness either.
Are you aware that oxygen is identified as a medication?
Diabetics take pills or perhaps insulin.
Depression sufferers take medications as well. Neither are inadequate, both are necessary treatments.
Oxygen is necessary. And it is a treatment.
I believe that once you think on this, you may feel differently about yourself!
Lill
I'm on oxygen 24/7 , I hate it and embarrassed so I stopped going places. I no longer go to family get togethers etc. I miss out on many good times thru this but I can't change. I have tried , the last time I went out for a meal for my granddaughters birthday . I hardly touched the meal and watched the clock the whole time wishing it was over, I was very anxious, nauseous and sob. I was only out 2 hrs but when I got back home I was worn out and wept buckets .i felt so bad I vowed not to do it again. My partner spends a lot of time with his family so I spend a lot of time on my own. It's been like this since 2011 and I get so depressed .
My heart goes out to you, you must be missing out on so much and spending so much time alone.
Have you read Lill8398s reply? She summed it up wonderfully, Oxygen is medication and you shouldn't feel embarrassed. If anyone stares at you, stare back!
Take care
Jo x
That was a brilliant reply llill. My husband is on oxygen 24/7 and finds it embarrassing when he goes out. He avoided going out at first but we started by going to restaurants with family at very quiet times. Being one of 4 or more and not many people about , slowly started to lessen the embarrassment . Whilst he still is not really comfortable he realises that it is either with O2 or not at all. Believe me, most people are polite enough to ignore you and those that aren't are not worth bothering about!
Reminds me how lucky I am to only have to wear a face mask at night! Not from the COPD, but the sleep apnea. I empathise with him, sticking a mask on overnight and feeling like something from a horror movie isn't pleasant and I'm lucky because my wife is the only one to see it - having to walk out wearing a mask must be horrible for him.
Wish you and him all the best
Hi shannon
Bless you.
What ever you do, DO NOT feel inadequate.
There are alot of people who have to use this to help them breath.
It probably will take time before you are comfortable with using the Oxygen with people around, even your family, but you will.
Do you use it all the time, or when you need to ?
Lots of love to you.
Kev (UK)
Hello Shannon,
I am on oxygen mostly overnight at first the thought of having to go on it made me feel like I just wanted to cry, but I have found people very understanding, also if you want to go out and shop holidays etc. it's a must we went to Canada last year never thought that would happen, but please do go out you will be surprised at how quickly you enjoy it. There's a big world out there, Enjoy it Shannon! All the best Jen.
Thank you Sonsy, I am glad to have your perspective!
It is a shame some miss out on life and shutter themselves away, but I do understand how it is.
Sometimes it takes a push and another point of view to have people see things in another light
Your husband is fortunate to have you.
Lill
That's good advice Lill
You've made a trap for yourself, haven't you? I can understand resenting the inconvenience of carting oxygen around but I don't understand the embarrassment, neither do I understand restricting your life even more than it already is.
If you can't change this by yourself, have you thought of counselling to deal with your feelings?
I wish you well: I think we all go through emotional upheaval as well as physical, but there are ways to make it less restricting: please try!
I've tried many times to go out for meals etc mainly to please family members but they don't understand how I feel. I can't enjoy it , I get hot and anxious the meal hardly gets touched ( I tell them I can only eat a little) when I get back home I sit and cry for hours, I can't do this anymore at almost 67 I can only see it getting worse. Thankyou for your reply to my post . Julia
Hi Shannon, I've been mixing with people on oxygen for over 12 years, it really is no big deal, for me or for them, I guess I got very familiar with people on oxygen through our local breathe easy group, if you are in UK I suggest you contact the British Lung foundation to find out more about the breathe easy groups, also if you are living in UK you might want to check out the healthunlocked / blf discussion forum, there are many people on that forum using oxygen, living a reasonable quality of life. Going out and about, having holidays overseas, go out for walk to improve their level of fitness. ~There are so many people of oxygen still living an out and about life.
Of course if you are living overseas, try and make contact with your countries lung foundation, US for instance have their own groups equivalent to breathe easy in UK. If you mention which country you are residing in people here may be able to suggest other things to you.
Many people on oxygen do go out and about, some hire a scooter so they can easily manage their oxygen tank, some who are fit enough use their oxygen on their person as a back pack, some with smaller cylinders that last only 3 hours for instance wear them on a belt provided round their waist, others have their own carry handle and fitted trolley so the cylinder can be wheeled behind them.
There really is no need to feel embarassed, I think if you managed to mix with others socially through a lung group, such as breathe easy you would feel more at ease among others with a lung condition those on oxygen and those not on oxygen.
The danger of not going anywhere because you are embarassed is really not helping you, by not being sociable, not going out, you will get to a point where you can't go out, so I would say while you still can do it, its a good way to help yourself become more comfortable and more confident, trust your family and friends when they offer this sharing of time with you, be thankful that you have them around.
I think if you are having anxiety about this situation you should speak to your doctor as to restrict yourself from going out will hinder your health in many ways, your doctor can help you to overcome this, consider referral for counselling, cognitive therapy training to get you beyong the fear, embarassment and feelings of inadequacy.
Be courageous and go get what life you can while you still can.
Best wishes V
Thank you Jude.
Julia
I would like to understand this process better.
What are your thoughts about as you are getting ready to leave? And what are you thoughts when you are out?
I would like, if you are able and in agreement, be specific as you can be.
If you are unable, I understand.
I have a theory and I would like to see if further information bears it out.
Lill
Wonderful reply and good suggestions Vee!
Shannon, I use oxygen 24/7, and actually appreciate it. I often wonder what they did in the past, when it was no available. I went six months without it, and then broke down and eventually had heart failure. I appreciate it now that I am using it. This is why they say it is a medication. I went six months without it, and had no idea what was exactly wrong with my health, and had not idea it was oxygen related due to lung condition. But, after six months of having very low oxygen, and now regaining the oxygen, thanks to concentrated oxygen, there is such a difference, and I appreciate/love it. I hate that we have to wear the silly cannula and tubes, and carry a tank around when we either are in bounded or out bounded, but I do believe it when they say that we live longer if we use it! I do it mainly for myself, and my family. Your family should be proud that you are using it, since it is helping your health and causing you to live longer. I am sure they are...it does seem it may be yourself being self conscious? That is very uncomfortable, but in my opinion, if someone doesn't like looking at someone who has a lung handicap, then they have the problem, not myself, and No, I will not allow other people to dominate my go abouts either. If they don't like it, then get use to it, is what I would say to them! I do get a kick out of small children calling me monster or other names, but I just smile at them. It is the older ones, who have the problem, and I personally don't care to know them...but honestly, I never seem to have the problem with other adults....instead, they smile at me and help me (if I need it). I knew when I first wore oxygen, that it is either be a prisoner at home, or, go out and be glad that I am alive and enjoy life in bound and out of bound (home). Also, my children and husband will have it no other way.....we don't have other family in my location, just sons and husband, but I do it for them, because we have soooo much fun together! I just can't let others make me stay indoor's like a prisoner, and I hope you make that decision too, and once you make that decision, stick to it. I am not ashamed of wearing oxygen, since it saved my life too. xo
Also, to add,......I wanted to express how horrible not having oxygen for six months felt....it was the pits. I didn't pay attention to my sat oxygen level, and looking back, I don't recall the Dr's or nurses, noticing it either, so today, I can't say how low it was. I only wished someone would have let me know, because at the time, my least thought was low oxygen (for some reason). But, I felt so sickly, and was having hyperventilation attacks occasionally. That was scary. Then one morning, I woke up, and my son had to call 9-1-1, and I ended up in the ER having heart failure. The heart failure turned out to be non lung related, so they said, and it was not right sided or left sided heart failure, so I was lucky...it has healed also...this was three years ago.
Great post Brenda! I'm not at the stage of needing oxygen but know I will be if I live long enough.
To respond to your speculation, I guess people just died sooner as they also would have without the inhalers we now have.
Who knows, with all us baby boomer ex smokers getting to the COPD age, maybe someone will come up with a cure before too long - we can only hope and in the meantime manage our condition as best we can.
I must admit that I freaked out a bit (internally) when I first went to rehab and came into contact with people with advanced COPD on 24/7 oxygen and told my daughter that I didn't like seeing that as my future,but now down the track a few years I accept I have something incurable that I just have to make the best of.
Thanks for sharing your sensible positive attitude!
Keep hanging in there Brenda, you're an inspiraton!