Sleep Question

[nmw0615]

I know I've seen a question like this on here, but I don't have my computer to search for it.

Do other CFers need as much sleep as I seem to need, even when healthy? My family and I are currently on a trip (I won't call it a vacation because those are supposed to be relaxing) and I am constantly tired.

We're going to bed late, getting up early, and there's no down time to take a nap. When I bring it up, they blow me off.

I was in the hospital the three weeks prior to this trip, so it's been almost 5 weeks since I've been able to get enough sleep and I am feeling more run down now than when I went into the hospital. I'm really not trying to get in the way of my family having a fun trip, but all I want to do at this point is sleep. We're in Yellowstone at the moment, the altitude is too high for me to do much, and an afternoon where we aren't having to do something would be like a gift from the gods.

 

[jshet]

I am so sorry you are not getting to really enjoy your vacation. Would you be able to excuse yourself for one afternoon to rest, relax, and have some down time while the others go off and do something. Then around dinner time meet back up to have a nice evening? Hope things get better, hang n there.

 

[sdeuber]

your body tells you what it needs. Don't let others give you advice about your body - people, who do not have the slightest idea what CF means to your body. We are constantly fighting germs and bacteria, our lungs are working double if not triple duty - more than any "normal" body. That takes energy. You get energy when you recover and sleep. Just take a nap.
My in-laws never understand that I need to rest - they do not see anything physical wrong with me and taking a nap is a sign of weakness or sign of old age to them.
Screw them - it's my health and my body!

 

[TreasureGoddess]

Well said sdeuber! Get the rest you need, listen to your body. It is fighting all the time and using energy even while you're just sitting still.

 

[rtorres25]

Sleep Question, too.

I know I've seen a question like this on here, but I don't have my computer to search for it.

"Do other CFers need as much sleep as I seem to need, even when healthy? My family and I are currently on a trip (I won't call it a vacation because those are supposed to be relaxing) and I am constantly tired."
I'm interested in this response, too. I have a mild case of CF, and I'm ALWAYS tired. I'm otherwise healthy at the moment. Good weight, great health other than my lungs. I can sleep an hour or two any afternoon and turn around and go right back to sleep at night and sleep thru the night. I don't usually have time to nap, but I find myself constantly needing to. Is this common? I've had thyroid checked and everything I can think of. Sometimes I feel like I have narcolepsy.

 

[LittleLab4CF]

But you look fine? Enjoy the days when nobody sees how hard you work. If it were my parents, I'd wait until about bedtime and piss them off with something that will keep them awake. Do this nightly until you have the advantage.

Once they can't keep from destroying a room for a lost bill or such, it's time to turn the tables. If a clear statement that you need 9 hours of sleep daily is beyond comprehension you need heavy guns to make your point. Skip meals to catch up sleep. Eat on the road with some take out orders, filled while the folks eat. If this takes too long, lower your expectations. Not really, but you are grouchy, a sign of fatigue. Maybe you should save energy holding your tongue.

A medical answer, 8 to 9 hours sleep at a minimum for some average CFer. After five weeks in the hospital it seems you take the time you need. Depression hides at the extremes of somnolence so watch it. You know your limits. And you know the cost of ignoring them.

Love your Pesky Parents,

LL

 

[gunelle]

Yes, I need 9 hours sleep. It's common knowledge in my family and friends, and most of them respect it. But they do not fully understand as they do not need it themselves. So jokes are often made about it. We need our sleep to recuperate. On the weekends I sleep siesta, a two hour nap in the afternoon. And sometimes I get to nap Sunday morning also, those are the best

 

[Twistofchaos]

Yep I need a lot of sleep. 8-10 hours minimum on normal days and it quickly increases with significant activity or decreased health. Can go one or two nights with less but it quickly catches up with me.
Depending on where you are at with your health CF is tiring on the body, activity counts double and our bodies need the recoverytime.

Trips are wonderful especially active ones but you do need the rest. Nothing much to do about that. If not you simply stop functioning after a few days or get actually sick. When traveling with a group they either have to keep you in consideration or you could skip a day and rest at the hotel.

Went to Norway recently and on active trips like that I get up early-ish, 6 or 7 and then I'm active through the day. (Walk, travel, see things) But then I have no choice but to head back to the hotel after dinnertime and try to be in bed with lights out at 9 or so in the evening. Who cares, had a great trip where all went well and all that I really missed out on were the drunk Norwegian women at night. .. ohh

 

[epicurus]

Hello, I used to need 10-11 hours sleep per night too and I would still wake up exhausted. I was always falling asleep on the sofa at 8pm (which was annoying as I would never get to see the end of a movie!) However, since I have been supplementing my glutathione levels, I have a lot more energy and only seem to need 7 -8 hours sleep these days. I wake up refreshed and ready to go at 6.30am without an alarm clock. My lung function has improved dramatically too. I have heard similar stories from other people with CF too.
I hope you enjoy the rest of your vacation and manage to get some rest. It is not good to get run down with CF as this makes us more likely to get sick.

 

[Twistofchaos]

I have heard similar stories from other people with CF too.

Are you sure you aren't just advertising a "miracle drug" as per "make money on the internet" pyramid scheme? Through promoting and selling some company's product, and by paying them a monthly fee that you hope to get back.. you learn how to make websites and get inside knowledge advertisement skill or whatever these companies promise you. Hope I'm wrong, but it quacks like a duck.

 

[Twistofchaos]

Some googling and what a surprise, pyramid scam. Max International. What a succestory!
Learn to network, sell our sugar flavored snake oil to the gullible and get rich now!

https://www.youtube.com/watch?v=UEST1wyXq6o

Really hope no one bought into that crap, except for you so guess who the joke is on.
I do suggest you give people their money back and take your website down.

 

[azdesertrat]

Yea, I'd say CF'ers do need more sleep. When I was younger & still working I could get by with less than 8 hrs. of sleep, but I never felt GOOD when I skimped on sleep. Since I'm no longer able to work, I can pay more attention to what my body needs & yes, I need at LEAST 8 hrs. of sleep to feel half-way decent. Since I've always been a 'night person' & the meds I take tend to make a person insomniac, its hard to get that much sleep. I just do my best to get 8-9 hrs. of sleep after I finally do get to sleep. My Wife always told me 'Sleep is Medicine'. She's right. If people around you aren't considerate of your sleep needs, you need to just take it. If that means sleeping while you're going down the road (as long as you're not driving, of course, HAHA!) than so be it. If you can't do that, I guess you'll just have to do the best you can & make up for it when you get home. Hope you're feeling good & enjoying the trip, when you finally TAKE some time to sleep!

 

[nmw0615]

Thanks for the replies everyone. The thing is, they understand I need more sleep when we're at home, but someone, just because they were feeling okay on the lack of sleep, they thought I should be fine. I ended up having a bit of a breakdown after I asked for a later start theist day and they were saying no.

I really wish I could have just slept in while they went and did their thing (because I found out I can no longer hike at an elevation of 7,000+ ft if I still want to breathe), but everything I wanted to do was always scheduled for the end of the day and they wouldn't agree to come pick me up after their stuff was done.

We got home last night and I had to work this morning, but I plan on napping tonight and sleeping as much as I can tomorrow. The thing that worries me now is I'm coughing almost as bad as I was before I went into the hospital, even though I only missed a couple treatments during the entire vacation. I'm really hoping this lack of good sleep didn't undo the three week hospital stay.

 

[gunelle]

You really shouldn't have to miss ANY treatment while on vacation. It's just not worth it. Thankfully I am surrounded by people who let me rest and they do their thing, while I do mine and also we do things together. That said I have experienced friends who have a harder time understanding. And also going on a trip I always take a day off before returning to work. To rest and catch up. Hope you have learned from your experience and will do things differently the next time...

 

[1BumLung]

Do you have a pulse-ox with you? You may not be getting enough oxygen. At higher altitudes your heart works faster to make up for the lower oxygen, making it harder to rest and sleep. So even your normal amount may not be enough.

 

[nmw0615]

Gunelle, I made the choice to miss four treatments. My sister, father, grandfather, cousin, and a friend of my sister were going on a canoe camping trip where we would be in the middle of nowhere, on the banks of a lake, and I wanted to go. Those canoe camping trips mean so much to me, in terms of restoring me mentally and just giving me a memory to hold onto when I am feeling depressed, that I made the choice to miss the treatments for the trip. Every other day of the trip, I did both treatments, even adding in an extra one here or there.

1BumLung, even without realizing the connection between sleeping and oxygen levels, I knew I was not getting enough oxygen. I live at almost 5,000ft and do fine there, but we were at 7,000+ and I know I was having a hard time. I couldn't do the geyser walks, or any other hike I wanted to do because I couldn't breathe. We had already planned on finding out my oxygen levels at higher altitudes in order to get a prescription for oxygen for a 14er hike I had wanted to do, but now we will be working towards getting that oxygen so I can enjoy camping in the summer. I'm not planning on letting this disease take away one of my favorite pastimes just yet.

 

[CyrilCrodius]

If you end up having to go back to the hospital, don't hesitate to heavily put the blame on them for not letting your rest because they're apparently too fucking stupid to understand that you are sick.

Use my words if you need to, that should drive the message home.