Breathless

[Looseloafers]

Hi all. Just want to know how the hell do you cope when everything you want to do makes you so breathless??? This IPF is getting the better of me. Help!

[sassy59]

It’s not nice to feel breathless all the time Looseloafers and I’m sorry your IPF is getting you down. Pete has COPD and other problems and gets very upset at not being able to do things he used to. Just take things one day at a time.

I wish you all the best. Xxxxx

[Looseloafers in reply to sassy59]

Thank you for the reply. I do try to slow down but it is so hard! I think I am just having a bad day all the best to you and Pete

[sassy59 in reply to Looseloafers]

You take care. All the best xxxx

[Shazrab]

Hi I’m so sorry to read your not doing well with breathlessness, I suffer this way to and I have copd all I can do is just sit up in bed and not move to my breathing feels a little better sometimes it does a lot of the time it doesn’t but it’s my only answer for myself, I try get up every one half hours just a few steps can leave me feeling like I’m going to pass out I’m so weak . I do this because of having blood clots but it’s not easy I’m sorry I cannot give you any good advice I know I can’t say try and relax and I know this isn’t easy to do being the way your feeling it’s so very frightening getting out breath , I hope you improve soon I will keep you in my prayers 🙏 take care and maybe someone will come along with advice that’s helpful 🌹🌹🌹

[Looseloafers in reply to Shazrab]

It’s awful isn’t it! I’m finding it difficult to come to terms with my own mortality! I’m 75 in years but 35 in my head

[Caspiana]

Hi Looseloafers 😊

Have you had pulmonary rehab yet? That may help for starters. I know what you mean about being breathless all the time. I suppose I have become used to it, by the same token I have had to learn to slow down 🐌 a lot. I take breaks in between doing things and I try not to push myself beyond my limit. My little hand held fan also helps me when I need air. xx 🌼🌱

[crafters23 in reply to Caspiana]

LEARNING OUR LIMITATIONS AND AJUSTING OUR LIVES AROUND THEM SEEMS TO HELP ME COPE WITH BEING BREATHLESS ALL THE TIME !

[Looseloafers]

Havnt been offered rehab but am seeing a specialist next week so will see what happens then fingers crossed she can help

[Ergendl in reply to Looseloafers]

Ask for Pul Rehab if it's not offered. That's what I did, and it made a real difference.

[Looseloafers in reply to Ergendl]

Will do. Just feeling a bit sorry for myself this week will try to be more positive

[Hacienda in reply to Looseloafers]

That's The Spirit. My Favourite Word. "Positive" Be Strong. xxxx

[davecarol2]

it’s a horrible disease we try our best to cope and have no choice but to slow down ! wishing you posative days x

[Looseloafers]

Thanks so much all the best to you too

[Hidden]

U do every thing slowly I have a hand held USB fan sold at b and m shop £4 . 99 it's my new best friend for just under a £5 it really helps with breathing I've had empyhsemia 15 yrs I am struggling these days I could do with a partner but left that one too late so u do what u can

[Looseloafers in reply to Hidden]

Yes I am learning to do everything slowly (I hate it) the fan sounds like a good idea. We have to keep fighting xx

[Hidden in reply to Looseloafers]

Try the fan hun it really helps with bringing your sats up

[Jomo46]

Are you on oxygen yet?. They say it doesn’t help breathlessness, but I find I can do slightly more and slightly more quickly now that I’m on ambulatory oxygen. The pul rehab strengthens muscles so they can do more with the same oxygen intake. I love gardening and used to do 3 hours non stop but now, 2 years into fibrosis i do one minute work then 3 minutes rest with a chair by me. It’s tough, I hate it but I still love the garden. The consultant etc all say exercise as much as you can to slow deterioration. I make sure I walk outside for 20 mins at least a day. It’s often very slow with stops but being outside helps me mentally as well as physically. I find if I sit too much, my chest clogs up and then my breathing gets worse, so I try to keep doing little things but we are all different and at different stages so we have to find what suits our own bodies the best.

On Sunday, nice weather, I was weeding in the garden for 5 hours ( with a lot of rests). When I came in my breathing was awful and oxygen levels when sat down about 84 . I had to keep the oxygen on and it took 2 hours for it to come back up to 90 without the oxygen. I took some steroids, and then checked with the gp the next day. He said I’d done the right thing and suggested a 6 day course. I wasn’t wheezing ( asthma). But definitely symptoms of something. An hour after the steroids, a massive output of thick mucus from sinuses .

How long have you had IPF?. I have sarcoid pulmonary fibrosis. When diagnosed 2 years ago I could hardly get up from a chair and panted within 2 or 3 steps. With the drugs and exercise and later (jan this year oxygen) I can walk for over an hour on my better days.

I find there seems to be a lot more help for copd sufferers and often feel there is very little support for pulmonary fibrosis people.

The very best of luck finding your way for your body.

Lots of hugs, I have been miserable about it at times, but I think my mantra is do what you can, while you can .

Xxx jo

[Looseloafers in reply to Jomo46]

Thanks for the chatty reply. No I’m not on oxygen yet I’m very resistant. I go to the gym a couple of times a week and swim on Friday. I love gardening as well but like you have to take lots of rests. I think I have idiopathic pulmonary fibrosis but the consultant waffled so much I’m wasn’t sure that’s what he was saying I’m seeing a specialist next week so will find out a lot more info. Most of the time I stay positive but have off days but just plugging away. All the very best to you and keep fighting. Luv Sue xx

[Jomo46 in reply to Looseloafers]

Lucky you being able to swim still. I used to love it. We have to enjoy what we can still do though. I get my off days too . I’ve found hot weather makes my breathlessness worse. Good luck with the consultant.

Xx

[Chestyblocked in reply to Jomo46]

Well done Just had my oxygen delivered How do you carry yours is it in a backpack Want to go out and see if I can walk better I have an infection at present so can’t do too much

[Jomo46 in reply to Chestyblocked]

My canisters at first were the paediatric ones that lasted about 2- 3 hours at level 2. I carried it in a back pack they supplied. I tried a trolley that they can give you but I found it unwieldy. ,especially as pavements round here are rough. I definitely found it better than no oxygen, but the cylinders are heavy. Don’t do too much at first, if you have an infection. See how you do. I eventually found on hospital visits I ran out and 2 cylinders were too heavy. The hospitals will always put you on their oxygen while you are there. I have ahalf hours walk and half hour waiting for bus and getting into the hospital.and then the same back, so even though I used the hospital oxygen, I ran out for the half hour walk home.

Eventually, as they say I am very active. ( if I sit, my chest gets clogged) they gave me an Imogen converter which gives me 5 hours or so. It’s wonderful, on an easy small trolley. It has a shoulder strap so can be carried, but again, gets heavy for me.

I found the back pack for the cylinders awkward to swing on and off and eventually pulled muscles in my back. I made a strong shoulder bag that I could carry across my body with head and arm through the strap. It was much better. Some people use a shopping trolley padding the canister in position.

Good luck. Let us know how you get on.

[Aingeful]

I am 2 years into IPF ,when is your breathlessness worse? Mine varies and can be different at different parts of the day. Sometimes I can be very breathless when I'm shopping then I seem to walk the breathlessness off! Steps,slopes etc are killers for me! I asked my GP to refer me for Pulmonary Rehab and I went last year.I loved it and was shocked at just how much I could do.They measure your oxygen and make sure you don't exceed your capabilities.You also meet other people like you(having said that,I was the only one with IPF!) Seemingly,we're a rare breed!😁

[Looseloafers in reply to Aingeful]

I was diagnosed with emphysema 10 years ago but this last year I have been much more breathless so was sent to a consultant who thinks IPF I think. He wasn’t very clear will find out next week when I see a specialist. Mine seems worse first thing when I get out of bed I have to keep sitting down whilst getting washed and dressed. After my first coffee and a read of the papers I’m much better then I fade again about teatime.you are right steps & slopes are a killer xx

[Aingeful in reply to Looseloafers]

Have you had a CT scan? As far as I know, this is the only way a definite diagnosis of IPF can be made? The X Ray didn't show it.The other factor is The crackling noises the lungs make. I am not too bad in a morning,it's more when I'm walking etc. Hope you get a clearer picture of what's going on,keep us posted.

[Looseloafers in reply to Aingeful]

Yes had a ct scan and have crackles so think I have I

PF just no one has come out and said so! Will ask more questions next week when I see the specialist x

[Aingeful in reply to Looseloafers]

Good Luck!!

[Catfinger77]

Sorry you are going through this painful period of your life. Here goes some advice. Try to move more slowly, use pursed lip breathing. Check other breathing techniques online. Also check diet tips. If possible, try things you CAN do phsically, if possible, which keeps your body moving, however slowly. Cultivate interests which keep your mind going, even if it's only playing online games. I play online pool games and it makes me feel better, even gives me a bit more energy.

[Susan1200]

Hi Looseloafers,I know exactly what your going through, when I am feeling breathless I actually force myself to go out for a walk, try to take deep breaths and when I arrive home I actually do feel a little better, because the more I rest the more I am out feel out of breath.

Regarding the hand fan I find it certainly does help it's definitely worth trying the hand fan.

I hope you feel better soon, I shall say a prayer 🙏for you never give up .

Best wishes

Susan 🐘

[goat-lady]

Grim - having a bad week- I hope it passes and the next week is a better one for you. I am doing pulmonary rehab and I would say - go for it. The staff are v supportive and I have been very surprised at how much I can do. The boost to my confidence is great-I hadn't realized how much I had given up on. Best wishes.

[Looseloafers in reply to goat-lady]

I have been out all day with a friend and definitely feel better. Sometimes I think I just feel sorry for myself. Must try harder to be positive all the time xx

[Looseloafers]

It’s an awful disease I hate it with a great hatred. I don’t really understand pursed lip breathing but will look on u tube. I do try to keep moving just slower with lots of stops. Onward and upward I hope xx