In all honesty...

[MJK24]

So I have chronic hypersensitivity pneumonitis & was diagnosed about 10 years ago. It's been up & down, but I was found to be hypoxic at the start of this year and have been prescribed ambulatory oxygen. Struggling to come to terms with in all honesty. Trying to be positive & regularly go out for long walks, but I feel limited as can't just go away whenever I want, worried because I don't know if this is permanent or can be cured & terrified that it signifies the start of an ongoing decrease in lung health. Don't know anyone else in this situation & am finding myself regularly in tears and anxious. Was really hoping to go to France with my children, but cost of oxygen and the idea of not being able to go in the pool and splash about are devastating to me. Does anyone have experience of managing supplementary oxygen & an active lifestyle?

[CDPO16]

Hi and welcome. I am not very active and not up to swimming so can't help with that but I was prescribed ambulatory oxygen last summer and found that it enabled me to get out for short walks in local parks. As I am still basically sheilding I didn't go into shops. I found it quite easy to get used to. There are other forum members who use oxygen who may come along with their experience and advice.

[Damon1864 Volunteer]

HiJK24 nice to meet you, I suffer from emphysema and I too am on ambulatory oxygen. It can be frustrating not being able to swim but have you asked your respritory team or GP if you can take it off for a while, if so that would allow to go in the pool. Hope this helps please let us know how you get on. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻💖

[peege]

2 members I know of: O2Trees & PollyP ? They've both been determined to have an active a life as possible on ambulatory O2.I do recall a member years ago who loved swimming, she sought permission from the local pool to swim with O2. She had afriend walk along the side of the pool with her tank on a trolley.

Where there's a will there's a way. I suggest you work on the adjustments to your life & when you're a little stronger you'll think more clearly of some solutions.

Good luck and I hope you get some great replies ×××× P

[CDPO16 in reply to peege]

Very useful information about the member who loved swimming peege. I do know that my oxygen provider will supply longer lengths of tubing to attach to a cylinder which would help too.

[KJS15]

Hello and welcome. I too have CHP and have used ambulatory oxygen for just over 2 years. It took me a long long time to come to terms with it. In fact I put all the equipment out of sight for the first few weeks and I couldn't even stand to look at it.

Please do allow yourself time to 'grieve'. It's a big lifestyle change and does take some time to adjust to, learn what you can still do and what you have to try to do a different way. But and this is very important, make sure you do come out of that period and get moving.

The equipment can be bulky and uncomfortable and you may need to talk to your oxygen nurses if it doesn't work for you. Remember oxygen should be there to aid you with your lifestyle and not to dictate it.

There is a lot more planning ahead for trips and days out now, to make sure I have enough supply. It's very easy to get oxygen delivered so sites around the UK, there's a form you submit to the oxygen supplier approx 4 weeks prior. I've not yet tried abroad as the prices of oxygen supplies are too high post Brexit.

I'm fortunate in that I still work full time and my employer has supported a working from home contract. I do weekly yoga and keep fit classes (albeit slower than everyone else and adjusting to my tank on the floor). I love to see live music and I was always at the front jumping about, but now I sit and chair dance! Emailing venues ahead always help to ensure I can get a seat and take me oxygen in. I also applied for an Access card which has been excellent for events.

This condition also made me have a sharper focus on what was important to me, so last year I moved home and a few weeks ago I got married.

Life most definitely isn't over, it will be different and at times frustrating and difficult, but keep moving, keep fighting.

We can do this.

[CDPO16 in reply to KJS15]

Congratulations on your recent marriage, may you have a long and happy one.

[Izb1 in reply to KJS15]

Good news for a change, congratulations and hope you will be very happy both in your married life and your new home , great that you are seeing the positives x

[HollyBoyd in reply to KJS15]

Such great advice you have given to MJK24. Congratulations on your marriage and wishing all the very best and happiness for your future. xxx

[MJK24 in reply to KJS15]

Thank you so much for such an inspiring reply & the really helpful information. I’m starting counselling next week as this comes on top of a lot of other major events in my life (divorce, my dad’s death & COVID). Never met anyone else with this condition though and I appreciate everyone who’s taken the time to reply. Like you say, there’s going to be more planning, but it doesn’t have to stop me. Definitely will let myself grieve. Congratulations on your marriage, move and thank you again for your kindness and time

[Izb1]

Sorry MJK24, I cant offer any advice as I dont have that disease but wish you well and hope you can find a way to come to terms with this illness. I think when diagnosed with a lung disease its very hard at first but reading up about everything and finding ways to deal with the problems that come along help x

[Alberta56]

Welcome to the forum and best wishes. Hope you can come to terms with needing oxygen and find it improves your life.

[HollyBoyd]

Although I use ambulatory oxygen there is no way I can add to the best advice given by KJS 15. As I am heaps older than you I no longer live an active life although I do get out with family and I still carry out exercise as regularly as my health allows. There are portable oxygen concentrators that vary in weight and delivery and your oxygen therapist will give you advice on them. I recently bought the handbag size one and it really has been invaluable to me, allows me freedom when I go out. Wishing you the very best in continuing your active life xxx

[slram]

What is CHP?

[MJK24 in reply to slram]

It’s chronic hypersensitivity pneumonitis

[slram in reply to MJK24]

I saw that, but what exactly is it?

[Caspiana in reply to slram]

Google can sometimes be very helpful. 👍🙂

[MJK24 in reply to slram]

It's where an immune response causes inflammation inside the lungs which, if left untreated, can become scar tissue. They've never identified the allergen in my case.

[slram in reply to MJK24]

Wow. Is there a way to identify the allergen?

[Caspiana]

Hello MJK24. I was on oxygen for a couple of years, so I understand what you are going through. I did some yelling and screaming and then sobbing but once I got it out of my system I went everywhere with my oxygen. It is VERY IMPORTANT not to become a recluse because of it. You MUST keep moving. I tried to focus on what I could do and not what I couldn't do. And then things became much better. The advice given above by the other members is wonderful. You will always have a place here when you need to talk. Keep your face towards to sun, it is harder to see the shadows that way. Best wishes to you. xx 🌻🌻🌻🌻

[MJK24 in reply to Caspiana]

Thank you so much Caspiana. Some days are more positive than others, but getting outside and meeting up with friends & carrying on as normally as possible are going to be important. I really appreciate all the support in this forum.

ps your dog is adorable!

😍

[Caspiana in reply to MJK24]

Thank you. xx ❤️