Feeling low

[nannyx6]

I just wondered if anybody else feels like i do , i have emphysema and bronchiectasis, had hospital admission last Nov and put on oxygen which i am still on, but having to go everywhere with oxygen find it hard ,also dont seem to get invited out like we use to and i feel its because i am a hindrance, when i go out i feel like people stare at you, i want to go on holiday but hubby so much messing about with oxygen i feel low because we had wonderful holidays and booking them made me have something to look forward to, my children are great but i feel like i am left out of certain things use to go clothes shopping with them but not anymore, i know its feeling sorry for myself day, but would be good to see if anybody else feels like this?

[sassy59]

I’m sure there are many who feel or have felt like you do nanny. Can you have a chat with family and friends so they know how yuu feel? People don’t always realise.

Hold your head high and get out in the nice weather. Enjoy your life as much as you can. Xxxx

[2greys]

Even healthy people hit low spots in their lives.

How about going out "clothes shopping" for yourself, even just for a simple scarf. Next time you see them you can boast about going out to them, proving that you are more than capable of it. They are probably treating you with kid gloves and just being over protective, which many who are disabled hate as well.

As for using your o2 in public places and feeling self conscious, to my mind it is no different to having to use a walking stick or a buggy, it is just an aide to being independent. I am puffing and panting like a steam train all the time unless I am sitting at rest, I get stared at because of it, but I take the attitude of "stare all you like because you might end up the same as me". Don't let it intimidate you, your o2 is still all new to you. The only alternative is to become housebound, which is not what you want to do.

[angie105 in reply to 2greys]

That is very true.

[Hidden]

Good heavens nannyx6 I would guess that there are more people on this group that have experienced what you are going through, than that haven't! It goes with the complaint that you are suffering from. Putting it bluntly, you need to start concentrating on the wonderful things that you can still do and stop fretting about the other things. You have a support system with your family that will be the envy of most on here.

[nannyx6 in reply to Hidden]

I feel i have had a slapped wrist for feeling low this morning thats why i wrote on here ,this afternoon i feel different again and so much better, yes i am very lucky to have a fantastic husband who supports me in everything and a lovely family unit which i know not everybody has and i am so so grateful for them all

[Hidden in reply to nannyx6]

I was concerned about you Nanny, otherwise I wouldn't have bothered writing. I'm so please that you are now feeling so much better. You are right about being lucky to have a fanastic husband and family behind you. I haven't and that's probably why I'm such a grumpy old so-and-so going around slapping peoples wrists.

[nannyx6 in reply to Hidden]

lol thank you for writing and i am pleased people take the time to give advise sometimes we need a sharp boot and make you realise lot of people worse of then you x

[aberdeenman]

hi nanny I'm not on oxygen but I know how you feel as I feel the same going out because I have to pace myself and walk a lot slower than everyone else feel like your holding them back, but if I'm out with anyone I just tell them to go a head and do there thing and I just doodle along.

[cofdrop-UK]

Yes nanny I believe most of us feel that way at times. I know I do. It’s especially difficult when you have more than one condition. I hope you feel in a better space soon.

I feel your dear family believe they are doing their best for you not wanting to over exert you. Perhaps you need to have a good talk with them. You could explain to your hubby just how much you miss your holidays together and you are determined not to let the 02 stuff get in the way and hope he will support you in this and get looking for somewhere for you both to enjoy. Again explain to your children just how much you miss not going shopping with them and that although you realise they feel they are helping you by non including you as they feel it might be too much, you do feel left out and perhaps you could all give shopping with the 02 a try.

Hope Im not interferring sweetheart, just trying to think of solutions which will help you feel better.

I acknowldege you feel low at the moment but I do hope you feel in a better place soon nanny.

Love cx

[nannyx6 in reply to cofdrop-UK]

Thank you i feel much better this afternoon as i talked with hubby and we decided once i have seen my consultant in May and ask about flying we will then book holiday ,so sorry sometimes i feel sorry for myself and just have to snap out of it but i know i need to lighten up x

[cofdrop-UK in reply to nannyx6]

No need to apologise. We pretty much all feel like that sometimes and I don’t believe it is of any help to tell people to ‘snap out of it’ as if they would choose to feel bad.

Glad you have sorted things out with hubby re holiday and hope you sort something out totally briliant.

Cx

[Robin77 in reply to nannyx6]

You're dealing with so much and so much change all at once, it's absolutely normal to feel downhearted and overwhelmed sometimes. Take care. Xxx

[Hidden]

Agree with Don..without sounding harsh I hope try to focus on what you can do not what you can't I've been unable to go on holiday for 25 years but it is what it is,you'll be grand we'll never be world class runners but our Bronchiectasis is a lifetime illness not a life sentence just try to enjoy what you can like I'm so looking forward to my granddaughters calling today, hope this post dosent sound harsh because it's ment to be uplifting,take care Ger

[nannyx6 in reply to Hidden]

sorry if i sounded ungrateful i was having a bad feeling sorry for myself morning of course my family are wonderful and my Lovely hubby has a lot to put up with from me feeling down to angry but we do laugh about it yes its not be all end all if dont go on holiday but hopefully i will see consultant in May and ask if i can fly if not we will go in this country and have a lovely time x

[Hidden in reply to nannyx6]

Try to relax (easy to say ) but hopefully you will have more good days than bad

[Damon1864 Volunteer]

I am about to be put on oxygen and dreading it. I already feel like I am left out of a lot of things. So yes I can sympathize with what you're saying.xx😊 Bernadette

[nannyx6 in reply to Damon1864]

Hi Bernadette, it was a shock to my system at first, and to be honest thought once i came out of hospital it would be gone but no so you learn to live with it honest yes it can be a pain when you go out and the trail of tubing can be a big pain to but i know in my heart i would be very ill and i am on it to make my life better, i am sure you will be fine let me know how you getting on with it so many people on here been on it years but this site is so helpful,

[Damon1864 Volunteer in reply to nannyx6]

Thank you I will definitely let you know how I get on. Thanks for the advice, and yes this is a marvelous site.xx 😊 Bernadette

[BevMG74 in reply to Damon1864]

I was pleased to get portable O2 so I could go out without feeling totally exhausted! I had started to limit my social life because of lack of oxygen but was not happy about it. I initially felt very embarrassed about carrying oxygen about but am just gritting my teeth (about feeling embarrassed) and keep saying I have a choice, ie. get over that feeling and enjoy going out with friends, or stay home and be lonely. I know I am one of the lucky ones on this site because I have only COPD and no other distressing complaints to deal with as well. Good luck, Damon 1864.

[Robin77]

What a tough winter you had. You must be worn out. Looking through I see you've got some very good suggestions for the other things. Re stares, it's often sympathetic curiosity. I was a bit nervous about wearing my masks on public transport but it hasn't been an issue. Once I was asked why a mask, but it was well meant.

[Carnival567]

I have bronchiectasis and pulmonary fibrosis, also pulmonary hypertension and other heart problems and have been on oxygen since September. I refused to be hidden away so went out with oxygen from day one feeling a bit like you. I found that people either don’t notice or are incredibly kind. Children sometimes ask, my husband told one little boy that I was training to be an astronaut! Talk about goggle eyed! As for holidays, if you stay in the UK you can arrange for oxygen where you are staying. Going abroad gets more complicated I understand. Everybody feels down with these illnesses, but try to be positive. If you don’t want to go out alone ask your family to take you. We are going to see my 3yr old grandson on a children’s show this afternoon. Oxygen all ready and scooter if necessary. All the best xx

[nannyx6 in reply to Carnival567]

Thank you i just had a bad morning tbh my hubby is fantastic with me i dont drive which means he has to take me everywhere , we live in the sticks but i have lovely fresh country and sea air so i am lucky , my grandaughter has just given birth to my great grandaughter Daisy 6lb 2oz bundle of Joy,i have a lot to be grateful for i know , i hope you have a lovely time grandsons childrens showxx

[Hidden in reply to Carnival567]

You made me smile about the mask. When my daughter sees people staring at me she does her best Darth Vader impression and says loudly ‘Laura, I am your mudda ‘ it breaks the tension.

[Carnival567]

We all have bad mornings, they do get better xx

[Annie31]

We are all human Nanny! Some days I am overwhelmed with anxiety and depression or either!

[Carnival567]

We had our afternoon out, and the show was lovely. It had been done by a dance school in Newport, so the children ranged from just over toddlers to about to go to university. The little ones were so lovely, watching each other to make sure they were doing things properly. It didn't always work but that didn't matter. Our grandson, Konrad, was roped in because there were so few boys, but I do not really see a future as an actor or dancer! Oxygen no problem and everyone very helpful xx

[Robin77 in reply to Carnival567]

Sounds lovely! Hope Konrad enjoyed his dancing debut too.

[Carnival567 in reply to Robin77]

Not sure about Konrad, I think his talents lie in other directions!

[Hidden in reply to Carnival567]

I was talking to a neighbours little boy last week who told me that he was playing a blade of grass in his school play. I tickles me how teachers dream up these things to fit everybody in with a part.

[Lmax]

Just read your post about going out with oxygen/feeling left out of things etc. I know exactly how you feel - have been on oxygen for at least 7 years now and I still loathe going out with it. Going anywhere is such an effort of organisation, making sure I have enough oxygen to last more than a few hours, carrying the spare cylinders/flasks - I get worn out before even leaving the house!

Since losing my wonderful husband 2 years ago (who did everything except breathe for me) life has got much harder BUT I know I wouldn’t be here without it. My sons and their families do their best to help whenever they can so we just have to keep going to the best of our ability. Keep your chin up (and your cannula up your nose!!) and keep going.xx

[nannyx6 in reply to Lmax]

i really feel for you i really moan sometimes about my hubby but i would be so lost without him he is so kind and does so much for me , i do know what you mean its such a pain getting ready to go out and to sort oxygen out making sure you have enough etc i will keep chin up and cannula up nose lol x

[joyce74]

I feel that way some times and feel for my husband having to keep loading my frame, oxygen cylinders in the car when he's not too good himself with arthritis though he says he doesn't mind. We have 2 daughters living only a few minuets away and they take me out at weekend when they can. I've learned to accept I can't do all I used to do and now have home deliveries for food shopping so my outings are to visit garden centres or even a potter round the charity shops. I see the oxygen as a good help and don't worry about people staring. Most people are very kind. You will get used to it, get out and enjoy yourself.

[Caspiana]

Dear nannyx6 .

YES!! Yes and yes again. I know exactly what you mean. Having oxygen is a hindrance, but I must tell you that it took me a good year to get totally comfortable with it. And yet, just today I shouted at my canister because I got cross with it. How ridiculous. 😞

I suspect people are worried to ask us out if it seems to them that we are unwell. Many people think that people on oxygen are too poorly to do anything and are perhaps afraid that we may feel obliged to go out even if we don't feel good enough to. I think there are many reasons, to be honest. It can feel awfully isolating. I understand. I sometimes ask my friends to come for tea at my house. I can keep in touch with them that way but we occasionally go out. They know my limitations and also understand that I may cancel at the last minute. I think true friends will go out of their way for us and we for them and "hindrance" would never , ever be an issue.

And yes, people stare😵. I say, let's make it worth their while!! 😊😃😄

Hang in there. It gets better.

Love,

Cas xx 🌹

[Shirleyj]

I have asthma and bronchiectasis, I'm not in oxygen. I think we all feel really low sometimes, go out and treat yourself, you will come out of it. You take care of yourself x x💝xx

[angie105]

I am also having a hard time dealing with it.It gets very frustrating ,especially when u constantly get criticized.I just try my best to deal with it ,all we can do.Stay strong