Out & about

[Looseloafers]

Hi everyone just a quick question before the lockdown how did everyone with IPF get out & about? I get very breathless with wibbly wobbly legs that feel like spaghetti! Do you use a wheelchair or just tough it out or just stay in! How did you manage shopping etc or jus5 meeting friends for lunch?

[Caspiana]

Hi Looseloafers , 👋

I do not have IPF but my left lung is still diseased with Bronchiolitis Obliterans which causes my bronchioles to become inflamed and eventually just die off completely. I was on oxygen up until my transplant so I can relate to what you are saying. Initially I did not use a wheelchair, I made myself walk as much as I could but , a couple of years post diagnosis I had to face reality. I could no longer spend a day out on my feet dragging my oxygen. So I walked as much as I could using the chair to store my oxygen and shopping but I got back in my chair when I could go no further.

In familiar settings nearer to home I did not use the chair. Instead I found places to rest en route. I could go on if I knew where the next bench was. I didn't use it ♿ at the park either when I took Chom 🐕 out (my oxygen strapped to my back in a ruck sack), we had our route and he always knew where the benches were and basically led me over to them. He still does it now even though I don't have my tank anymore. As for lunch with friends, they are kind enough to consider my situation and come nearer to me or to my house.

It is definitely tough, but it is so, so important for us physically and mentally to get out of the house. If anything, this current situation just emphasizes this point. We must stay in now, but I think the mental repercussions will be enormous especially for those living alone.

Sorry for my long winded answer.

Take good care,

Cas xx 🙋🐶

[Looseloafers in reply to Caspiana]

Thanks so much for the reply I can’t get out at the moment but am trying to look ahead and plan. Stay safe & look after yourself x

[AngieB72]

I didn’t go out much! I have ambulatory oxygen that helps a bit. I have a mobility scooter but don’t use it much - plan to use it more when it’s safe to go out. If I go out to meet friends I make sure it’s a place where I can park right outside, I have a blue badge so that helps. Lots of assessment of places before I go eg parking, toilets etc. As for shopping it’s all done online. Not a very exciting life but I’m happy enough and still here!!!!

[Looseloafers in reply to AngieB72]

Hi Angie. I just hate giving in! But I think needs must after this is over. Take care x

[chubby2x22]

I don't have IPF but use a scooter if I am going more than 50 feet. Otherwise I get very exhausted which defeats the object of having a trip out however short. But now with lockdown I have not left the house for 4 weeks and it is very unsettling, I feel cut off from the world as many people do. Friends stand on the pavement wave and natter, WhatsApp is red hot and the telephone has a new life. We will get through this, hopefully sooner than later. Take care. Jane

[Looseloafers in reply to chubby2x22]

I’m resisting the scooter idea which I know is daft but it feels like giving in! But you’re right it defeats the object if you feel so awful without it! Stay safe x

[Carnival567 in reply to Looseloafers]

I have a road going scooter, which has to be registered with the DVLA. I also have a travel scooter which goes in the car. I regard them as fun, and I can get out independently. When I go out on the big scooter I am a amused by the number of men who comment on its alloy wheels! Never thought of a scooter as a mode of attraction. If you do ever get a scooter I strongly recommend that you get proper insurance. All the best xx

Btw I got the big scooter because to get into town it is down one steep hill and up another. I couldn’t possibly walk, I struggle enough just getting around the bungalow.

[Looseloafers in reply to Carnival567]

Thanks for the reply I was thinking of a lightweight folding scooter I could put in the car I will try to think of it as fun😊😊😊take care and stay well x

[Caspiana in reply to Looseloafers]

Whatever you decide to do to remain mobile, out and about, please do it Looseloafers . It is so important for us to get out and about. Please do let us know how you go. Enjoy your weekend. xx 🍀

[Carnival567 in reply to Looseloafers]

Just remember that these so-called lightweight scooters are not as lightweight as all that, although CareCo have just started doing an “elevator “ to lift your scooter into the car! It is fun going out independently on a scooter, better than this being stuck at home for what seems like forever! Good luck xx

[CDPO16]

Hi, I don't have IPF but have stage 4 emphysema and find walking very difficult at times. I know what you mean about wibbly wobbly legs. There are exercises you might be able to do at home to strengthen your leg muscles.

When out (under normal circumstances) I walk as far as I can then stop and sit if a bench is handy or lean on something equally handy such as a railing until my breathlessness eases. It helps if a walk can be taken where those things exist. I have a small transit chair which my husband would push me in but I resist using it and so far have only resorted to it once.

As AngieB72 said, being able to park the car near to a place where I can take a walk is important. I live at the top of a steep cul de sac so walking from home isn't an option. For shopping I lean on the supermarket trolley a lot which I find really helps.

Hope some of this is of use to you. Best wishes, Carole.

[Looseloafers in reply to CDPO16]

Thanks Carole yes I stop and sit when I can but I think I will be worse after this lockdown! But onward and upward. Take care x

[CDPO16 in reply to Looseloafers]

Yes, I think that I will be much worse too after all this. We just have to keep b....ering on as best we can. Stay safe and well xx

[Corin1950]

My husband was given a walker that has a seat on it by the OT.

It might be worth finding out about one.

X

[Looseloafers in reply to Corin1950]

Yes I have thought about one either that or a wheelchair but rather not either 😄

[Corin1950 in reply to Looseloafers]

Yes I understand as I have the same feelings about getting a shopping trolley.

X

[Looseloafers in reply to Corin1950]

😄😄how daft are we! But I care about people looking at me pityingly 🥴🥴

[Jomo46]

I’ve had pulmonary fibrosis for 3 years now and gradually going downhill. My oxygen levels have gone up to 3 and 4ambul@tory. I start to pant very quickly if I walk. A year ago I could walk unaided for an hour. This went down to 20 mins with rests. I have only used a wheelchair once, when I went to b and q with daughter and son in law. I could walk but at snail speed. They wanted to make quick choices so we borrowed a wheel chair. On wobbly days I used a stick which helps but think after this lockdown I might need a trolley with a seat. At the moment I am 22 days into a covid or chest infection. So can hardly walk. I’ve found with this attack I have to rest, rest rest. But in past, a gentle extension of activity works. A few months ago I could walk only 20 steps, but daily extensions over a month got me back to 20 minutes. I find you have to listen to your body. I usually do squats every day to hopefully keep legs stronger. When we go out for a meal , I warn restaurants about needing room for oxygen machine. They are very good and try to place me in a good position. One place we go to is for me a steep climb to door. I’ve thought about a wheelchair but then there’s all the fuss of getting it in and out of car, etc.so I just go very slowly. Part of me says use it or lose it, which is definitely true, but there comes a time when you have to accept it. You have to do what is right for you. Do you have an oximeter? I find it helps to keep oxygen levels approx right. I found shopping ok if in store, holding a trolley. High st shopping has been impossible for about a year. Don’t lock yourself away. . Are you on your own, or got a partner who can help? I might get a motorised invalid chair in awhile.

Good luck

Xxxjo

[Looseloafers in reply to Jomo46]

Thanks for your reply it helps knowing other folk are struggling a bit like me🥴🥴 at the moment we have to stay in but after the virus 🦠 I’ll have to find a way of getting out. You take care x

[Oldspark]

Hi there

Just before the lockdown our entire family went for a meal to celebrate my son and mine birthdays (he was born on mine) I drove to the restaurant but had my oxygen cylinders, with me, my wife drove home, due to my alcohol consumption lol.

But prior to that I used a trolley type device with brakes and a seat, where I could carry the cylinder this enables me to walk and rest, but my legs too where like jelly, so sitting down often was not a problem.

Now I just walk about the bungalow attached to my concentrator.

But as I am now on morphine, I spend a lot of time sleeping.

There is a charity for people with IPF and they can help. It's called pulmonary fibrosis trust.org, they have been very helpful to me., There isn't a forum as far as I know.

Hope that helps

Good luck

Stay safe and well

Ernie

[Phyll]

I have PF, cancer, Diabetes, and Rheumatoid arthritis. I live in a 1st floor flat (no garden) and no-one to carry my oxygen downstairs. So I can never go out. And with this lockdown, never means never ever! Consequently, I read your posts consumed with envy. You can walk a bit, go out a bit. And you’re cheery and optimistic. Good on you all. I’ll be with you in spirit.

[Looseloafers in reply to Phyll]

Hi phyll I’m so sorry to hear about your predicament 🥴is there no charity that can help Age UK etc? Stay strong x