Another curious question,,
Sleeping,, for me its a curse or a blessing,, mostly a curse, I know I;m not going to get a lot of sleep,, if I sleep till 4am,, I consider it good, but it makes for a long day,, I cant nap,,
But I wanted to ask, do you have nights where you just trash your covers,, there laying on the floor,, or all balled up around your neck,, I get this more often then not,, or other times you swear you wake up in the exact swame position you went to sleep in,, and you basically just need to get out of bed and lay the covers right back down and hte bed is perfectly made,,
My wife is a couch sleeper,, and I try to be as quiet as I can when I am up at 4am,, but its hard when your stumbling around,,I just wish they could fix one thing,, just one
Interesting topic.
I love sleeping, cause I love dreaming.
But I have to get up two or three times a night, so then I spray my eyes and sip water to combat the dryness, and my sleep is quite disrupted.
I've been having a lot of pain, and that has made it harder, too, to get good sleep.
Like you, Navydad, I simply cannot nap. I have to be very sick to nap. Which is silly cause naps are good for us.
But I'm like a cranky child and will resist and resist a nap.
One problem with naps is that I take MORE Salagen in the morning, so if I try to nap, I drool. And the pillow is very wet. and icky.
Then I have the hot, cold, hot thing all night long, too. Which makes the covers a bit of a mess and sleeping more restless.
And when I go to bed my feet are freezing so I wear socks, and then I have to take them off in the middle of the night.
Wow, night time is an entire drama of activity. Lol.
Thanks for the topic.
Kisses
Elaine
SOCKS
I am only without them for about 20 minutes a day,, when I shower,, and depending how bad my feet are,, they might be heavy wool socks or thin cotton ones,, and even showering is getting harder, I just cant stand up that long,, and getting my arms over my head to wash my hair,, I almost fall over
Maybe you should get one of those seats for the shower and at least you could sit rather than stand.
It is getting more diffucult for me to do things this winter than last. having more trouble with my back and such horrible burning in my back around the waist. My hands are tingling, as if I used the lawnmover. Just more pain all over.
It's just not fair that we have to suffer so much.
I'm with Carolina, got to love wearing socks to bed, so not. I cannot go a whole night keeping them on, just can't do it. I've found them on the floor on the other side of the bed (must have been one interesting dream!), on the dresser across the room from the bed (dang, I shoot better in my sleep than when I'm awake :D), and once found a sock in my walk-in closet and I have no clue how that happened, egads.
By the way Carolina, what is drool? Can you tell I'm a bit jealous (my mouth isn't that dry either, but used to do that before this mess started)?
I hear you Navydad, it gets so hard some days, and I sure feel for you. For me, Its my balance thats giving me trouble, and it's getting very frustrating. I can't bend down without something to hold onto, or I'll fall over for sure.
Take care of yourself now, and I so hope that you come across a doctor that can help.
Take care of yourselves -
Patze
Yah, what is drool? (I am jealous, too!)
To look on the bright side, I guess the only good thing about having Sjogrens is that you don't have all those drool stains on your pillow!! My pillow is as clean as the day I bought it!
Liz D.
Ack, I shouldn't have used the D word!
My bad.
I had to cut back on the Salagen in the summer cause I think it's part of the reason I sweat so terribly.
But in the winter, with the dryness, I have two tablets in the morning.
Yeah, I don't have the dryness thing nearly as bad as many. but now my throat is so dry I have a gravelly voice like a heavy smoker. I keep trying to clear it, part of it is the postnasal drip (oops is that a no no too? PND? It is sort of a fluid). and part of it is the dryness. I have to have a bottle of water with me at ALL times.
BALANCE: Before I figured out what was happening, I fell backward OUT OF THE SHOWER at the YMCA TWICE putting my head under the water and my hands up to wash my hair. And had some scary falls.
Now I realize that my balance is shot, and I do everything very very slowly and carefully. Like the old lady I guess that I AM!
ack
I run the humidifier now constantly and have to fill it twice a day; And it has huge tanks, two of them. And holds about 7 gallons. So I'm doing the best I can to humidify the air.
Kisses
Elaine
Hi Elaine,
You mention that you have gravelly voice like a heavy smoker, what does your gastro say about that? I ask as mine gets that way when the reflux is acting up, even taking Aciphex twice a day doesn't seem to help much.
Take care of yourself -
Patze
I don't sleep well either. I sleep on the couch in the living room so I don't disturb hubby while I read, watch TV, do puzzles or be on the computer until 2 or 3 a.m. Just can't sleep. Plus when I do, I'm always biting my tongue/inside of my cheek, or the body parts I'm laying on go numb, or I choke on the dryness, or I have bad dreams...
Navydad - did I read that you have some doctor appointments coming up? I pray they are productive and the doctors find something - anything - that can lead to some relief.
Deb
NAVY DAD~i have insomnia like no other! my body's on auto~pilot cause my brain won't shut the muff up!
so usually MAKE myself turn lights off by witchin' hour (midnight) & i'm up again @ butt~crack of dawn!
(usually up every hr on the hr ta pee! durin my owwy gotta change position futile sleep!)
::) MMMMmmmmmmmm~COFFEE~mmmmmmmmmmmMMMM ::)
hubby has back pain so i usually see him off ta work!
~*FLUTTERFLY*~
My covers are just like yours, navydad! I also don't know if I'm hot or cold and can wake with a swamp in my bed!
Nap~ BUT I MIGHT MISS SOMETHING, HUH FLUTTERFLY!?
Sha
MISS SUMTHIN? OH H#LL NO...CAN'T...WHAT EVER IT IS...IT'LL ~FIND ME~!
EVEN IF I HIDE! I'M A LIGHTNIN'ROD 4 OTHER PEEPS FUBARS! (how do i turn off the big red truck peeps magnet i have?) >:(
~*flutterfly hidin' in a new spot*~
p.s. navy dad...'member ta tell the docs...YES DOC...IT BUGS ME! FIX IT...OR I RESERVE THE RIGHT TA NOT PAY U! I DARE YA!
Navydad~ I feel your pain about socks and the shower! However, my socks are on and off all day long! My feet will get to burning and I take them off, then a few minutes later they're ice cold and feel like if I tapped them they would shatter like glass and so I put my socks and slippers back on. On and off all day long! My husband built me a bench in the shower and I love it. I do think putting in a shower chair will help. It has helped me a ton!
I'm hoping they figure something out for you.
I;m having a hrd time grasping the idea that its comeing to a point where I need some kind of assistance to bath, or to even eat,, i am just so disgusted that they let me get this bad so quick,
Navydad, I wish doctors could fix us all. But they can't.
Hi Navydad,
Sorry to hear about your sleep problems. Like many of the others and you the only time I don't usually wear socks is in the shower. Even as a kid my feet would be cold in summer. the sleep thing is crazy. some nights I go to bed normal time and can sleep till morning. Tonight I couldn't get to sleep so came up to the computer, will pay for this tomorrow. I have to be up with my husband( he had shoulder surgery 2 wks ago) to take care of the animals. Back to sleeping, other nights I wake up at 2 o3 3 in the morning and it's 5:30 or so before I can fall back to sleep. It's been this way for about a year now. Go figure. I can't.
I don't want to take sleep meds, I don't like the listed side effects. If I take a nap, sleep won't come until the wee hours of the morning. In spite of the crazy sleep pattern, life is good because of all the fine people here and in my circle of friends.
CAtilee 2
Like Navy Dad my socks are on all the time. I also have to have slippers on or shoes. I put on my slippers, then switch to tennis shoes, then those bother me so I'm back to slippers, then switch to my boot-shoes, then too hot so switch to just socks then back to slippers and so on til bed. I used to fall asleep before my head hit the pillow but woke up not rested. Had sleep study and have apnea. Got the c-pap machine now I get less hours of sleep and less rested sleep. Hoping I get used to it soon. It's only been 5 weeks and I've tried 4 different masks. I an not a quitter so until I run out of masks to try I will be tired-er.
I'm glad to hear (but wish it wasn't so) that I am not the only one who gets tired standing in the shower. My husband always says "Go take a long hot shower. You'll feel better". Just the thought of getting in the shower makes me cringe because I have to stand. And raising my arms...so hard to do.
NAVY DAD...i know how u feel!I'M not that bad yet but i would still be callin it a t.t. thingy if it weren't 4 sha!
i have found docs just don't care how they send u home! cause lets face it...THEY DON'T KNOW HOW IT IS WHEN WE R HOME AS LONG AS WE'RE OUT OF THEIR OFFICE W/OUR COMPLAINTS & WE PAY OUR BILLS! (@ THE TIME OF APPT. 4 THAT MATTER) i think they should ~ONLY~ get paid if they cum up w/whats wrong...@least by the 3rd time U R complainin' 'bout the SAME THING THEY DIDN'T DX LAST TIME!
i am sorry that u have the same experience tho!
good thoughts cummin'atcha! don't duck...i'll make 'em hit softly! :D
~*FLUTTERFLY*~