Feeling down SOB and very negative. - British Lung Foun...

British Lung Foundation
41,416 members47,595 posts

Feeling down SOB and very negative.

amberbond
amberbond
16 Replies

Feeling very sorry for myself at present which you all may feel is very selfish. I apologise in advance but I am finding it very difficult to come to terms with this crippling COPD. I think if I am being honest I find it very embarrassing having to use oxygen in public. My sats on exertion are dropping dangerously low to 76! without oxygen ( I have just tested myself with my oximeter with 2% oxygen walking in my home from my kitchen through to lounge and extension which is a few yards there and back and can see sats dropping until I rest. I need to discuss it with my respiratory nurse again as I was adamant I would not carry a bottle around. Surely there must be another way? The current ambulatory machine is not adequate apparently, which although feel embarrassed about doesn't seem so obvious, apart from when a young lad in the supermarket said "why has that lady got tubes up her nose?" Felt awful. Am I too sensitive. Also I am finding I am crying inappropriately (I feel anyway) although have lost my lovely cocker spaniel Bobby last week and my son has got a new house, its probably empty nest syndrome but I still feel emotional and useless any advice?

16 Replies
oldestnewest
Pentreath
PentreathVolunteer

Oh bless you amberbond. It sounds as if you are being very hard on yourself when you have so much to cope with at the moment. I do not use oxygen but am sure some of those who do will be along soon to reassure you that using it will get better for you and tips to help you. Keep us posted about yourself please.

Reply
pixiedixie

Aw, sorry for the loss of your companion. It's not unusual for people with chronic conditions to become depressed, and I see you're trying to rationalise it with 'empty nest' syndrome. I suggest you pop along to see your doctor, as you may be depressed. I get very conscious of the fact that people stop and stare at me, and ask if I'm ok whenever I'm very breathless, so I understand where you're coming from, but please, the majority of people are too busy with their lives to see us, most of the time. Take care x

Reply
Hidden
Hidden

Hi lovely can only give a quick answer on this machine it locks out! You are not useless - I care for my husband who has to use oxygen and we had to say good bye to our beloved lab last week. Sending you massive hugs and lots of love I will message you on Monday xxxxxxxx

Reply
Weeannie

Awww bless you. You're being incredibly hard on yourself for NO REASON. You're ill and need oxygen to keep you on your feet. If kids ask their parents why the lady is wearing tubes you should tell them. That way you'll feel better and the kid will learn (hopefully not to smoke). As for the tears let em flow. You're boy moving out is reason enough but losing your dog too is too much. Allow yourself tears and make the most of your oxygen. It's just another accessory xx

3 likes
Reply
Hidden
Hidden

Oh honey

Reading that was like reading about myself im not kidding.

I struggle with the illness just accepting it still hasnt sunk in after a year....i too fall to 70s and have gone as low as 56 once that wasnt nice

Im also on oxygen and also struggle with going out with it in fact in the past year ive only been out once other than hospital appointments and embarrassment about using it isnt the right word for me in fact i cant even think what the right word is i just hate people seeing me with it

Last but not least your not selfish but its something a lot of us struggle with...this illness can affect almost every part of our lives and if having a moan about it is selfish then stuff it im having a moan

Your not on your own in how you feel it sounds like your my twin x x x

3 likes
Reply
costacal

Hi I think maybe we all tend to feel the same, though not always admit it. Mandy has summed it up. I get very frustrated and cross that I cannot do the simplest chores etc ......with the ease I used to.

You are certainly not on your own amberbond. I tend to only go out if I really have to ie Hospital appts. or most recently dentist.

I keep telling myself that I should be positive and get out and about more but it just feels so difficult. xx

1 like
Reply
bikergrove

Sending you a hug,losing your pet is devastating on its own but ill health like yours can be hard to deal with too. See your doctor or asthma nurse if this continues just incase you have depression setting in,which is best treated before it gets too bad.Lots of love and hugs to you xx

Reply
Bin1

Dear Amberbond please allow yourself to grieve and a knowledge your losses which may be more complex than may appear at first, you are potentially entering a new stage in your life as your son has moved out and maybe you had a picture in your mind of what that would be like, or maybe its something you have always dreaded. You have lost a beloved companion also, one who probably played with your son when he was younger so his loss may be magnified. All this and then add COPD. If you find hard to nurture yourself try and imagine a friend or your son in your position, talk to yourself how you would talk to them. You have enough to deal with without beating your self up too. All the best x

Reply
Hidden
Hidden

Oh Amberbond, i feel so truly sorry for you. I have'nt posted on here for a while because i've had my own private pity party, so you are not alone. I always look in everyday though, know i should have posted sooner because i would have had so much support from the lovely people on this site. Iam lucky enough not to be on oxygen yet, but even doing the simplest task leaves me fighting for breath, it's just so frustrating. Thoughts are with you. Love Sheila

1 like
Reply
papageno

Indeed, you are not alone Amberbond. We all have moments of utter depression because of our various respiratory conditions and impairments. I find that just getting out of the bath can use all my depleted reserve of oxygen and send my morale spiralling down at a vertiginous speed.

There is a recently released video on ambulatory oxygen in which patients talk about their initial reticence at being seen in public with the device. You may wish to look at the video at:

clahrc-northwestlondon.nihr...

You will have to copy above links into your browser as this forum text box does not seem to allow inserting hyperlinks [or else I don't know how to do it!]

Do you have oxygen at home?? If so you may find that the new national supplier Air Liquide have excellent support. The Air Liquide engineer who comes round every six months to check on my cylinder could be a respiratory specialist nurse as he is so good with advice and support.

I am so sorry about the loss of your pet. I know this is a cliché but time is the only remedy for reducing the pain.

1 like
Reply
undine
undine
in reply to papageno

Thank you for the little film - I too have ambulatory oxygen but not as smart as theirs - I have a canister on a wheeled trolley so it is very noticeable but I would rather breathe than care what others think - the people in the film seemed to have much less obvious systems but pleased they are doing well. xx

Reply
Nanaeal

Hi Amberbond. I hope you have been able to take on board all the loving kindness. Do try not to be hard on yourself and allow yourself to grieve. Your dealing with a lot its normal to feel sorry for yourself. I have moderate COPD Heart failure & AF sounds bad but actually (apart from a bad winter with chest infections) I lead a fairly normal life and I still feel sorry for myself when I'm having a bad day. The important thing is you did something about how you felt & asked for help well done. Lots of love & hugs Nan

Reply
Stephend

So sorry to here your feeling so down try thinking about the good times it may make you cry but that's good your not keeping it in COPD is not nice and there's not a lot we can do about it but we all keep going and that's the only thing we can do don't be embarrassed it other people should feel that for not understanding our condition and how hard it can be keep your chin up and head high you are still you , and your not alone stay safe and stay happy

1 like
Reply
undine

Quite understand where you are coming from - I lost my dear Mother and my darling dog last year and am still not over it - keep crying for no apparent reason - am on oxygen at home and have ambulatory as well but they are now trying to take these away from me - saying that I am border line - my fev is 25% and whilst sitting quietly I can get to 90 to 93% stats I too plummet when moving to about 79/80 and even on the oxygen am at low 80's. Needless to say have had a number of sleepless nights worrying about them taking the oxygen, and like you cry as I mourn the life I will now never have - it is hard to keep cheerful and I think sometimes it is good to have a good cry - yes there are millions worse off than us, and yes I do feel very sorry for them, and actually get very depressed about the suffering in the world, and try and count my own blessings but now and then the reality that this is it for me, I am never going to be able to do the things I used to, nor do the things I planned makes me very depressed and I think sometimes I am entitled to be and so are you - I miss my mum and my dog so much and feel so alone - sorry am crying now so will stop. Don't feel guilty have a cry and be gentle with yourself - take care xxx

Reply
helingmic

amberbond, OK. I'll comiserate with you and say ah! Can I presume you are new to oxygen and tubes. I used to take my oxygen to the gym - I only had one hour.

Which leads me to the next thing. It might sound crazy, but doing light exercises will actually help you.

Here is the type I'm thinking about (and doing every morning and night as I have my nebuliser)

Of course, you will feel tired; then stop for a bit until you can take it up again. Start slowly and easy on yourself. As somebody else said, be easy with yourself. you are who you are. You are not alone having tubes in your nose, so don't worry too much. If there's a lad, you can be frank with him and say you cannot breathe enough air, so you need more!

Do you have a trolley for carrying your bottles. I had one provided when I got some oxygen.

Keep the activity going, don't just give up and sit down and think this is better. keep moving, easily, slowly. Stop when you need and be yourself. Mic

Reply
Cyberpunk

Don't you worry my oxygen levels was down to 76 and went to lung specialist and I've been put on oxygen Friday I've not been out for 6 months because couldn't walk ten yards and was gasping for air now I've got the oxygen been out walking round shops it's like I've got a new lease of life don't be embarrassed if it helps that's the main thing don't worry about people looking that's what they do if it makes life easier that's the main thing I'm just glad to get out the house I'm 55 years old and I can tell you it's been great being able to finally get out and about don't feel embarrassed couldn't care who looks at me as long as I'm getting out that's all in bothered about so don't you worry if it's helping enjoy your new lease of life just ignore people because that's what they do stare if it's helping that's all that matters take care

Reply

You may also like...