Fatigue

[bromleycross Forum Member Find all posts View Profile Close bromleycross]

I was warned about fatigue but as have never had fatigue did not think it would apply to me .Seems I was mistaken and fatigue has hit today - am still in bed a first for me .
Going. to go on NIV in the hope it will help.
Any tips in dealing with this ?

[Mary C Forum Member Find all posts View Profile Close Mary C]

Good luck using the NIV..have you been assessed as needing it now?
I get tired but quite often just lie on bed for an hour or two in the afternoon ..reading, or watching TV etc.
Occasionally I sleep for a hour in afternoon.
I didn’get on with using the NIV but might try it again after I discuss it with respiratory nurse soon.
Best wishes
Mary

[Ellie Forum Member Find all posts View Profile Close Ellie]

... fatigue has hit today - am still in bed a first for me .

Sorry to hear that. If it came on out of the blue, it's always best to make sure there's no underlying infection causing your fatigue.

Going. to go on NIV in the hope it will help.

I thought you already use NIV or maybe you meant you are going to use it for a while now to see if it peps you up somewhat? If you are lying down in bed for several hours longer than usual, you might not be doing yourself any favours if you're not using NIV. A conflicting situation for sure...

Sending you a special hug 🤗🤗😘

[LindaB Forum Member Find all posts View Profile Close LindaB]

I also find fatigue a tough one....no matter what I do my energy is zero....I'm hoping NIV (once I have it) will help.
How do you find in general getting on with NIV?

bromleycross

Forum Member

Find all posts

View Profile

Close

bromleycross

[matthew55 Forum Member Find all posts View Profile Close matthew55]

I use coffee: seven spoons of coffee and six of brown sugar in a mug, allow to cool down. Then two or three 60ml through my PEG. 🙏😁👍😀xx

[Ellie Forum Member Find all posts View Profile Close Ellie]

... seven spoons of coffee and six of brown sugar in a mug,

🤢🤢 What's your stomach lined with - tungsten?? 😘

[matthew55 Forum Member Find all posts View Profile Close matthew55]

Lol. I take something to protect against ibuprofen but it's more to do with years of abuse. 😁😍😚😘xx

[bromleycross Forum Member Find all posts View Profile Close bromleycross]

Strong black coffee is my daily wake up but minus the sugar - needed 2 today.
Sorry meant an extra hour of NIV may perk me up but didn’t today but I am having a NIV and blood gases check on Friday so may need to up levels on ventilator.
Linda I was very resistant to NIV and being claustrophobic did not help but now I use it nightly and quite enjoy using it as it helps me sleep.If you are trying it and it will be assessed by your blood gases try using it whilst sat up in bed then every 5 mins lie down a bit this does help if you have a hospital bed. I found by slowly lying down until in my sleeping position helped immensely . I now even cope with the chin strap to help keep my mouth closed - stops me snoring too. Once on the whole contraption looks like a scold’s bridle - I’ll let you google that one Jane xx

[LindaB Forum Member Find all posts View Profile Close LindaB]

bromleycross

Forum Member

Find all posts

View Profile

Close

bromleycross thanks for that insight. 👍

Scold's bridle....😂

[Ellie Forum Member Find all posts View Profile Close Ellie]

Once on the whole contraption looks like a scold’s bridle

You've not seen the 50 Shades films then Jane? 😉🤣🤣😍

[Ellie Forum Member Find all posts View Profile Close Ellie]

... I am having a NIV and blood gases check on Friday so may need to up levels on ventilator.

That's timely. Good luck at the appointment. xx