Resting State?

[roxie]

Does anybody else feel like they have to spend a large part of the day laying down, still, doing nothing, & usually with your eyes closed?

If so, how often & how long?

Can anybody keep themselves occupied most of the day if it's sedentary, like reading, drawing, or crocheting )things like that?

I feel like I have to spend most of the day lying down in rest mode, I do very little activites besides those that are necessary like bathing & such. Is there anyway to get to a point where I cab stay occupied doing simple things? I get so bored watching tv, listening to music or audiobooks but much else just wipes me out.

[janiedelite]

It seems that about 10% of my days are "good days" lately, when I only have to lie down for 1-2 hours in the middle of the day. The bulk of my days are spent lying down for 3-5 hours scattered throughout the day. Then I have days like I've had for the past week, when I can only be up for 3-5 hours of the day (I think it's a combination of a virus and the heat).

My hands hurt too much to do sewing or crocheting. Usually I have the laptop propped against my knees as I'm lying in bed, or I'm lying on the couch or floor and watching our little foster child play. When I'm feeling the need to lie down, I'm usually too fatigued to do much more than watch TV or listen to books on tape. I can type lying down, so I started volunteering for DINET last year and I can do all my volunteer duties via computer.

[Noreen]

I would echo thankful's reply. Her estimates are pretty right on for where I am at. If I go to the doctor or an appt, I can be totally wiped out that day and the next.

I'd love to be at a point where I could read a book. Not being able to read is one of the cruelest parts of this. I can't close my eyes as it increases the vertigo.

Trying to get anyone to understand those limitations is tough.

noreen

[nmorgen]

I spend probably 80% of my day sitting down. I read or I get on my laptop. Sometimes I watch tv or movies, but my mind tends to wonder most of the time. I have found comedies easier to pay attention to though. I have to admit it can be pretty boring. I try periodically to get up and do something, but then I find myself either dizzy, tired or just plain feeling bad again. I have found great at home jobs online, but you have to live in the US. I would like to do something, but just can't seem to find anything productive or profitable to do from home.

[Sarah4444]

I have the same problem right now. On a good day I am lying down 22 of 24 hours, with 1 hour total throughout the day when I can manage reclining or sitting up and 1 hour in the pool, floating around (light swimming for 2-3 min). I have watched more brainless TV in the past year than in the prevous 39 years combined and I'm bored out of my tree. I have also found that books with complex plots exhaust me, which is unusual - I have always been an avid reader. What is most frustrating is that I feel like my energy is focussed inward, like I have to pay attention to things like breathing that I used to take for granted. I feel and seem very distracted and am beginning to feel disconnected from my kids - when they talk to me I am always having to ask them to repeat what they have said, and I have to force myself to pay attention and concentrate. I can't feel mentally relaxed at all even when it appears that I am doing nothing but lying around all day.

Wish I could drink (kidding - sort of).

Sarah

[Noreen]

... and 1 hour in the pool, floating around (light swimming for 2-3 min). ...

Wish I could drink (kidding - sort of).

Sarah

Hey visualize having one of those umbrella drinks while floating in the pool. Have one for me while you're there - I am supposed to avoid chlorine.

The really bad thing is not being able to follow a television program - I can lose track of the plot easily if I can't rewind.

[Brye]

I'm visualizing the pool, the drink, and even the umbrella! No rest here for me though. I have 4 kids and there is no time for rest. I have my chair in the shade outside for our driveway fun and a chair in the shade near the swingset!! I also recruited a very reliable babysitter for the summer who saved the day. I do have to say though I actually had a day recently I

wasn't feeling well and laid around more than usual and I did notice a definite increase on my symptoms when I stood up. Amazing how fast that can make a difference! For me I think I just need to keep moving!

Brye

[potsgirl]

Absolutely! I go up to bed about 5:30, read until about 6:30 to 7:30 (on a good night), and wake up around 5:30 - 6:00. After lunch, it's more reading and hopefully I fall asleep for a nap for an hour or so between 2-3. If it weren't for the computer, my books, and recorded tv shows, I'd go more crazy than usual. I was walking my treadmill mid-morning a couple of times a week, but two weeks ago I broke a toe and it's still too painful to work out yet.

EEERRRGGGHHHHH!

Where'd my life go??

[Simmy]

My symptoms have improved dramatically. I used to be able to stand for only one or two minutes before needing to go horizontal. Now I?m up to almost three

I estimate that I?m upright for a total of less than one hour a day, which means I spend 95% of my life either in bed, on the couch, or on the floor. In my case there are two ways of looking at it ? I either limit myself to only a couple of minutes of standing at a time to prevent exhaustion (and headache, dizziness, etc.), or I stand longer and then suffer the consequences and can?t get off the couch for hours.

I consider myself very fortunate to have POTS in 2010. I can?t begin to imagine how bored out of my mind I would be without the laptop and TV.

[Brye]

Absolutely! I go up to bed about 5:30, read until about 6:30 to 7:30 (on a good night), and wake up around 5:30 - 6:00. After lunch, it's more reading and hopefully I fall asleep for a nap for an hour or so between 2-3. If it weren't for the computer, my books, and recorded tv shows, I'd go more crazy than usual. I was walking my treadmill mid-morning a couple of times a week, but two weeks ago I broke a toe and it's still too painful to work out yet.

EEERRRGGGHHHHH!

Where'd my life go??

Potsgirl ... I broke a toe recently too. Walked into the piano. It's been over 3 months and I'm still feeling the toe pain. I've been able to start walking on the treadmill again though!! Hope your toe heals quickly!!

Brye

[Tammy]

Ahhhh, so good to read that I'm not alone with this! I feel like my whole life is sucked up by time on the computer, reading, or watching TV because of how much time I have to spend in a resting state due to being so weak and sick. I'm so thankful that it's 2010 and live in a time with heat/central air and all the other commodities available to us now. I can't imagine how people with POTS lived in the early 19oo's.

[potsgirl]

Thanks, Brye!

[ladyt]

Most my life for many years have been very very litle done. Most spent in bed or my reclainer chair. last couple of mnths i have bben abel to read and actualy remeber some (but not everyday or for hours). I have also some days that i can do a lilte, but so easy to overdo it. and after outings i generly gett worse for hours or days.

Some days i stay in bed most of the day, and then in the evning feel better something. What that somthing is depens alot. Some days I am ust gratfull if i gett to feel a litle better, so its more comfertebel to exsist. other days i can preper a light meal or very ligth cleaning. I can not empty the dishwasher in one time. The a bitt better moments in some days of the mnth have come after starting on allergy pills. i am very ggreatfull for it. i can do some knitting and stuff at times. But have done less of it latly, cause i try to collect time to do bitt bigger stuff, like cut veggys etc.

i am very greatfull for tv and my bigg dvd colection, whit many difrent sorts of dvds, like very braindead enertainment for very no brain day and up.. And then even more for the moments that i can do somthing other than tv=) that is a slice of wounderfull.... i hope for more and more woundefull, if not, then i hope that it doestn gett less..