How Many Hours Can You Be Up?

[erikainorlando]

I don't really know how to do a poll.....but I am curious...if we assume we sleep 8 hours a nite, how many of the remaining 16 can you be up and doing things? And what does it looks like?

For me, I am good in the mornings (not always tho)...can be moving for 3-4 hours...then I have to lay down for several hours..then I may be able to get back upright after that so for me I probably have about 6 - 7 hours a day that I can be somewhat functional. The rest of the hours are spent reclining and many times not feeling well at all.

Just wondering

Erika

[Christy_D]

My son feels awful every morning and cannot get up and function until about 1 to 2 in the afternoon. Sometimes, like yesterday, he was in bed all day. He did not get up until today. But usually by 2 in the afternoon he is functional. We have his homebound teachers come at 5:00 in the evening, as he is usually better by then.

[scarfgirl]

Oof, that's a tough question.

For myself, and I imagine for most people, mornings are the worst. I'm actually at my best around midnight, but I'm trying to 'force' myself to change so that I sleep during 'normal' sleeping hours.

As for how long I can be up, a lot of that depends on what I'm doing while I'm up. Actually, it mostly depends on what I was doing while I was up the day before.

[firewatcher]

I'm up, but sitting for most of the day. Sometimes I just have to lay down and get the blood back in my head.

[dakota]

My daughter usually gets up around 1-2. She's been trying to set an alarm for 10 a.m. and we're going to see how that works. It takes her about an hour to eat breakfast and get going. She can be up for a couple of hours and then is tired again from about 4-8 p.m. and is mostly sitting down. Her teacher comes from 3-4:30 twice a week, but she's often tired by the time she's here. She is more awake mentally after 8 p.m., but is still sitting down for most of the evening. She will usually go to bed either around 9:30 or around midnight, depending on whether her sleep medicine is working. But most of the evening is spent sitting.

[toddm1960]

Great question......

I have to be sitting for 15 of those 16 hours, if I'm on my feet for more than 15 minutes or so I get real potsy. The only reason I can still work is I sit at a desk for 8 hours, and this still kicks my butt. I have no energy left when I get home.

[Guest tearose]

It changes for me day to day.

I try to "count" on six hours but it depends on how I use my energy in those six hours. If I managed to get out and about and it required physical stuff, I may need to nap to make it through to dinner. I have had a day of 10 active hours and then needed two days to recover.

I don't have a predictable pattern.

[bkweavers]

My daughter gets up around 9am to go to school by 9:45am. She's there until 2:30pm. She never naps and goes to bed around 10pm but doesn't fall asleep until 12:00 unless her sleep med works. Her entire day is spent reclining, both at home and at school. She is dizzy anytime she sits up, stands, or walks. She hasn't done any of those by herself in 26 months. We're working on trying to gradually sit up by increasing the time and angle but it is slow going! We've been hoping a medication would take some of the dizziness away, but nothing has worked so far. Her dizziness has always been her worst symptom.

If her dizziness would decrease, Liz could do a lot more because she is tolerating going to youth group at church and taking an extra class at school on 2 days a week. She is better in so many other ways.

Brenda

[janiedelite]

I feel very tired and painful in the morning. I usually stay lying down til 11am when I slowly do my daily bathing, compression, dressing. After 1pm, I usually feel up to moving around. Altogether, I usually can be up for 4 to 7 hours total but that includes sitting, and I have to lie down probably every 30 minutes or so. I try to walk for an hour or so every evening. I feel my best from 4 to 9pm, after which I get more painful and achy for some reason.

[Brye]

My days are normally from around 7:30-1:00 and 3-8 that I'm up. It's really hard for me to make it through the day without my nap. The heater repair guy showed up at 2:40 today (20 minutes earlier than scheduled) and said as I answered the door half asleep "that was good timing". Good timing for who? Too much info probably! Point is I can barely make it without my 2 hour nap in the afternoon. Thank goodness my kids cooperate with the napping plan!!

Brye

[mvdula]

Brye, I sent you a PM. Your post is interesting tho - I don't nap, but I do find that that midday period - like 11-1 is not pleasant for me - somehow it is related to lunch/hunger/appetite/lack of appetite/low blood sugar feeling that is not actually low blood sugar/too full after i eat. It is odd - I do not have these problems around breakfast or dinner at all. Can you relate to this? Does anyone else have this strange daily problem?

[MommytoSJEA]

I get up at 8am to get the kids ready for school. They leave at 9am. Sometimes I drive them sometimes the neighbor does. Depends how I feel. Sometimes I don't dare get behind the wheel of a car in the AM. After they leave I clean up the toys laying around and then I get on the computer to do whatever it is I need to do that day. I usually need to nap by 1pm at the latest. (I get back up at 3-3:30p when the kids come home) ON thursdays I work in the AM and it kicks my behind. Most of the rest of the week I work nights and as long as im on my butt a good chunk of the day I can manage at work. WOrk is hard for me because Im on my feet most of the time, but since I'm a manager I can sit whenever I want. They are pretty understanding. On week nights I get home around 11:45p and on weekends 12:45a. As long as I can come home and recline at night mentally I feel pretty good. Potsy like crazy, but pretty good at the same time if you know what I mean.

~Kelli

[ramakentesh]

That depends but I rarely lie down during the day and just try to fight through - some days im able to do this ok but others its a struggle - im up sitting from maybe 9am to 10pm at night at the moment, but in the past its been as much as 7am to 12pm with no major issues.

For me I usually feel tired in the morning but I get worse and seem to build to the worst symptoms around 11am to 2pm - after that it can either improve or hang around for most of the day depending on how crook I am at the time.

I walk every night, and run every second. Not really sure if its helped yet though after 5 months.

[potsgirl]

Hi Erika,

Our POTSY minds must think alike. I was just wondering about this same thing. It looks like my schedule is kind of the opposite of most of the other people posting. I'm horrible in the morning, very sluggish, but can't seem to sleep past 5:30 to 6 am. Then I'm up until about 2, when I take an hour nap. It's pretty downhill from then on. I get really tired by 4-5:30, and usually head upstairs to lay down and read until 6-7, and then it's light's out. So, I guess I get in about 11-12 hours of 'up' time a day, varying of course by the day.

I've tried 'resting up' the day before for something that's happening on the next day, like a friend of mine with POTS does, but it doesn't seem to work for me. Oh, and my recliner is my best friend!

Cheers,

Jana

[Elenapap11]

The last three months were so exhausting that now that i am feeling better i sleep 9-10 hours!

In October and November i could not stay up for longer than 10 minutes.In the classroom i was seated most of the time and if i had to stand up and write something on the board i would start feeling light headed.I was sleep deprived because most crisis were during the night and early in the morning.

Now i can be up for many hours but although i haven't had a severe crisis for almost a month, i still do not have the strength to lift supermarket bags or do much at home-i only do the cooking.To be honest i am afraid of doing many things because i don't want to exhaust myself and start having symptoms.I sometimes wake up at 12pm(!!) have a light salty breakfast(and plenty of water) and i relax until i go to work around 3.30.I have given myself permission to become a bit lazy,more relaxed,more focused on myself and my needs and this has helped me a lot.Getting enough sleep,doing things that are pleasant without tiring yourself physically are essential for us patients and we should not challenge our poor bodies by doing things that we don't have the energy for.

[erikainorlando]

Elena11 - you really hit the nail on the head. I don't push...if I am hurrying or stressed I get very symptomatic very easily!

[flop]

For me it varies hugely from day to day and more noticeably recently from week to week. On a really good day I might be up and about from 8am to 11pm and I could be out of the house for up to 6 hours. However a lot of that time would be spent sitting - at home, in the car, at hospital appointments, in cafes etc.

Days like yesterday are not so good. I dragged myself up at 9am for a 9:30am meeting. Tried to force myself to stay awake whilst doing important jobs like going to the council office and the jobcentre (sorting out my benefits). By 12 noon I was exhausted so went back to bed. Got up again at 3:30pm as I had booked a hair wash (cheaper and easier to go to the hairdresser than have a care assistant come to my house). Back to bed at 5pm, got up again at 7pm to collect my sister from the train station. We went to pizza hut for dinner then back home and sleep again - I was soooo tired!

Flop

[Elenapap11]

Erika i know first hand how hard it is to live a quiet stressfree life.It's almost impossible.The mistake i used to do is that everytime i felt better i kept myself busy all day trying to do all the things i couldn't do when i was really sick.I am still trying to remind myself that even now that i am better i need to conserve energy and not use it all at once.It's hard to get rid of the guilts for not being the perfect partner,professional,mother etc. As the documentary says we have to live with changes.And our family has to realise that they shouldn't upset or tire us.We need love,help and support-(not just in words but in actions).I am still trying to reinvent myself but i think i am on a good track because i feel better.I wish from the bottom of my heart that everyone will start loving themselves a bit more and make changes that will give them a better life.Our body and mind talk to us so we have to listen really carefully:-)