[Adelaide Campbell]

Following closely:

 

I’m disgusted with myself, the overwhelming weakness, shakes, aches, sweats, fatigue.
Starting today, I’m going to stop this laying around, feeling sorry for myself.
Youtube has many excellent gentle yin yoga sessions, by Kassandra, as long or as short as I wish.  Also morning and evening ones.
YIN yoga is simply lying on the floor, stretching.  And holding that stretch.  After a session, it often feels like you’ve had a massage.  And your mobility has increased.

IT WORKS.  But I’ve lost the motivation.  Any tips on reactivating that? The only bribes that I want are to go back onto my bed or couch, and be left alone with my iPad, my book, my phone.
How do people MAKE themselves DO things?  For those who do, I have awe and respect.

[Adelaide Campbell]

I’m 78, diagnosed with ILD PF, and have just got over Covid.  What a nasty ugly little virus that is!  So five days mostly spent in bed, and five days getting over the fatigue that lingers.  I’m on 2l for exertion but I haven’t needed oxygen much for a while now. And I didn’t use much while I was sick.  I’m back out in the garden, enjoying the summer weather.

I also read the stats, and was furious that my husband brought Covid home with him.  He’s aware he could have killed me.  But I’m ok now, just coughing a bit more than usual, and not always a dry cough like it used to be.

[Adelaide Campbell]

I can’t add anything to this thread, except:

I’ve just returned from the UK, I live in Ontario, canada.

I took the OxyGoFit POC, with a back up battery.
Neither there nor back did I need it, though I used it a bit for boarding, and disembarking.

No change in my O2 levels at any time.

But in on 2l for exertion, not needed at rest.
Before travelling (this is all new to me.  I’m 78 and up till now physically and mentally very active, and I have ILD PF) I learned lots and lots from the different forums, but much of it was incorrect.

Now I’ve done it.  Maybe I’ll do it again, depending ……… each day is different.

however, I think you’ve made the right choice for your mother.  I’m not very far along the ILD path, yet.

Addie

 

[Adelaide Campbell]

I’d stall on the meds.  That’s what I’m doing.  I should have started on steroids but I’ve a trip booked to UK tomorrow, for two weeks, and I definitely don’t want any potential side effects to spoil my time there.
I will start when I get back.

I might not take that chance if my disease ( ILD PF) was more advanced.  But I’m on oxygen 2l upon exertion.  Pulse, not continuous.
it could be my last trip, but I’m going, no meds.

[Adelaide Campbell]

I’m lucky ….. I have a cleaner, who is also a friend.  (I’m old so I can afford her.)
But I try to do some myself ….. changing sheets!  What a pain that is, leaving me breathless and exhausted.  Then shaking hands for a while after I recover.

WHEN do you turn to your oxygen?  Ok, if I use it, I feel much better.

BUT … if I sit for a while, I feel much better.

In both instances,  I can use my oximeter and watch my O2 levels return to normal.  They drop into the 70s or 80s and then come back up to the 90s with EITHER rest or with oxygen.

I don’t want to become dependent on oxygen.  But to be honest, a lengthy multipurpose trip to Walmart yesterday left me really exhausted.  It is getting worse.

How did anyone else know when it was time to use the POC?

Thank you, Addie

[Adelaide Campbell]

I’m so with you, Kim.  I want to make plans.  I’m a person who needs to make plans.  Otherwise I worry worry worry.  But I can’t get a straight answer.

I know I’ve only recently been diagnosed, but that doesn’t mean that’s when the PF started!  Not at all, I remember symptoms (SOB, which I dismissed, 2-3 years ago).  This year it’s got worse …. but will it not be so bad in summer?

It took a while to absorb the diagnosis.  Double whammy, this AND old age.  I’m so not ready for either.  Life seems bleak.
So PLEASE, I want to know, two or three or four or five years, or LESS?

I want to look into MAID, but I don’t know if you have that in the US.  I’m in Canada.  My PCP is against and she won’t discuss, but I haven’t talked to my pulmonologist yet …. Getting a rare half hour appt with him doesn’t give much time.  I can make the decision myself, with support from husband and friends, but ….. when?

Ah well, a day at a time.  Addie

 

[Adelaide Campbell]

Yes, I have one, I got it on Amazon.  It’s a neat little thing, red.  I push it or pull it.  When shopping, I can lift the whole thing and put it in my shopping cart.

I’m female, and old.  I find the weight of the POC too much for on the shoulder, ok in a back pack but hard to get at to turn off and on.  But the trolley makes it all so much easier.

I also didn’t use my oxygen as much as I should, but I can take this into the garden with me, I can take it anywhere.  So I’m doing much better with using it.