Typical Day?

[Kat]

Hi,

I am just curious what a typical day is like for people? How much time do you spend laying down? How you manage to take care of kids or things around the house.

Thanks,

Kat

[hippychic258]

I was just thinking today of posting this same question.

[peregrine]

It does depend on the day somewhat for me, but this is a decent average approximation.

I wake up around 10am and spend ~45 minutes getting ready for work (eat breakfast, get dressed, put on compression stockings, make a quick lunch).

I head out the door, put in one earphone (reduces the spaciness somewhat if I only use one), and begin walking to work. It's a 1.75-mile walk (all downhill, thankfully). Lots of energy goes into making sure I don't trip on things and making sure I watch for cars, since my spaciness is very bad while walking.

I arrive at work, settle down, and spend ~30 minutes checking email and doing other mindless things while I recover from my walk.

Depending on the day I do various things (experiments, reading papers, going to seminars, meeting to discuss things). I also spend a lot of that time not doing much mentally (my mental stamina is limited and I get brainfoggy ~all the time).

Sometime in there I eat lunch (usually ~1pm), and an afternoon snack or two.

Around 6-7pm I leave my office and walk about 2 minutes to the bus. I take the bus for about 20 minutes (uphill), then get off and walk 10 minutes back to my house, same spaciness issues as before.

I spend about an hour relaxing (it's now 7:30ish) and begin discussing dinner with my partner; we eventually finish cooking dinner (with me on my stool at the stove) around 10pm.

I eat, do my physical therapy exercises, relax or work a bit more, then shower (sitting!) and go to bed around midnight or 1am.

[roxie]

Wow, peregrine. How do you do it???

I get up at 9, take my midodrine, get on my stockings & eat breakfast.

I'm worst in the morning so depending on how I feel I just sit/watch tv or go online for 1/2 hr or so

Then I do my vision therapy, I have eye problems.

Rest

Then I do some exercises. Depending on the day it's walking a few minutes or riding the Rec bike & small stregbth exercises.

Rest some more

Have lunch.

For the next few hours I'll read or write or do something like that with frequent rest intervals

Around 3 I do some more exercise on the Rec bike & then have to rest for like an hour. I always watch Ellen then but when I laugh I get dizzier but I can't stop watching the show, she makes me happy!

Then I do some readin or writing (I want to be a writer). Or take a walk.

Around 530 I have dinner

Rest or read

Do a few exercises

Usually around 7 I'm mostly done sometimes ill go on the comp for a few minutes or knit for a few minutes here & there but other than that I sit in a recliner & watch tv till i go take a bath at 10 to help me fall asleep.

A disclaimer (I guess) I've been sick since I was 12 and am still living with my parents at 27. I don't have the demands of cooking, cleaning, or taking care of children.

I've always wondered how I'd ever be able to. It may sound easy that I don't have to do those things bit it's kindof awkward bc I know I'm not mentally or even physically incapable of being independent, although my body doesn't have the endurance. It can make me feel really bad & I have to remember to seperste the difference.

I do wonder bow I can get to taking car of myself w/out being the maid so to speak & doing everything around the house.

I just wonder as a whole how I can get to having some sort of independent life? It's what I dream of doing but really struggle with.

I mean I can't even work from home bc I only concentrate for 10-15 mins before I need to rest. I can't imagine the challenges if laundry or cooking. All of you who manage are superstars!!!

[roxie]

And my walks are less than 5 minutes. My goal I'm working towards right now is to walk for 5 minutes

[Kat]

Wow. Peregrine that is impressive. I had to reread it twice to get make sure I had it right. I am really impressed.

I hate bananas...me too. If it is any consolation, I have kids and a house to run. There are days where I would give just about anything to be able to move back to my parents house. Even being independent, I don't feel independent, if that makes sense.

It takes forever to get a task done because I have to keep laying down in middle of it.

[Christy_D]

For my son, it varies. He gets up any where from 3 in the afternoon to not at all. If he gets up, he is in a recliner in his room at his computer. He rarely leaves the house and is completely deconditioned. If he is able, his teacher comes at 7 pm and stays to 8:30 or 9 pm, at which time he needs to continue with his schoolwork. He watches a lot of Netflix or plays on line computer games when he can.

He has become very isolated as he progressively feels worse. We are hoping to find medication to help the MCAS and turn this around.

[roxie]

Kat- I can imagine. When my little cousins come over I also wondered how it's possible to raise kids while you have POTS.

Christy- the isolation is so hard. I had no friends in HS & I still don't have very many. I wanted to be in my room all the time but my mom wouldn't let me. She limited my time in my room & made me spend the rest in the living room so I was less cut off. I'd get SO mad at her, I felt invaded. I understand the reasoning now but even now I have days I want to alone & like it when parents aren't home.

[puppylove]

My summer schedule is all crazy so here's my normal day: wake up around 8- 12 depending on how I feel/ when my homebound teachers are coming. Eat a yogurt. If I dont eat a yogurt I feel way worse- blood sugar issues? Not sure. Anyways, then I try to get ready. Get dressed, do my hair and makeup. Sometimes I can't do my hair and make up but I always get dressed. Homebound teachers come anywhere from 2 1/2- 5 hours a day. Then I eat. Then I do homework. I go to the gym 2-3 times a week. Then I do the dishes (usually sitting). Then I shower (sitting). Then I watch TV / iPod until three or four in the morning because I'm too nauseous to sleep. I hate that time the most.

[peregrine]

I'm lucky in several ways - I have a partner and housemates who help out on days that I can't do much, and because I got diagnosed quickly I got treatment quickly. My main issues right now are transient presyncope, brain fog (which interferes mostly with work), and severe spaciness; I have fatigue almost constantly, but not to the same degree as other folks here seem to have, which I know is a really serious limiting factor for some, and my nausea is less bad than other folks' as well (and headaches very rare).

[Birdlady]

I sleep about 6-8 hours. Mornings aren't particularly bad for me. No worse than any other time. I get up, feed cats, make coffee, scoop litterbox, clean up whatever disasters they made during the night...haha!

Work on stuff for husband's business, blog, youtube channels etc. I have absolutely no problems while sitting. In the summer, the heat makes me a lot worse though.

Some days I make lunch and dinner. Might even make a treat like GF bread... Some days my husband makes food instead. Throughout the day I take care of cats, do dishes and very basic house chores. I don't do laundry every day and I certainly don't vaccum every day...lol But these are all things that eventually get done over the course of a week.

Most of my day is sitting at my computer. Not exactly great for deconditioning... I can drive and can go shopping by myself if I choose. My HR's are insane when I do things (170+) yet somehow I am somewhat functional. I can do stuff in quick bursts as long as I don't have to be standing for more than 40-60 minutes and I can sit down for 5-10 minutes to recover. Sitting down for short times, allows me to then get back up and continue on. I have immediate recovery upon sitting. I do not spend time in my bed or in a recliner. I take probably 2-3 naps a week when I push myself too much or I get overheated. Naps are more frequent in the summer.

Some variations may occur at times. I may babysit nephew, visit family, go on day trips with my mom etc, but most of the time I am just sitting in a chair at my computer or downstairs, sitting with the cats, doing light chores, feeding cats, feeding cats and feeding cats...lol As far as working goes, if I could get an office job that had absolutely no standing requirements I could do it. I just can't find any of those. Even most receptionist jobs you have to file stuff which requires a lot of stooping, bending down and standing time. Thankfully I don't have fatigue or brain fog.

[misstraci]

This is going to make me sound like I'm well or better off than most but to be quite honest, I feel like walking death most everyday. I was actually telling my partner yesterday, how, if any regular person felt like i feel on a daily basis that they would either be 1. in the emergency room or 2. laid up in bed. I am pre-syncope A LOT of the day, I'm lightheaded, seizury feeling, fatigue, tachy, palpitations, It's awful but I have to push through. I have no choice, we can't afford to not do what we are currently doing.

We wake up at 6:30 and get ourselves (partner and I) ready for work and wake up children (7 and 2) get them ready and out the door. Luckily I don't have to drive, we carpool, if i were responsible for driving, then, I'd either have to find a bus, marta, another carpool or something. (I can't drive) Work 8-4:30, luckily I have a sit down 90% of the day job. Pick up kids from daycare, Come home fix dinner, do homework, read stories, watch a little tv, make sure kids are in bed, then I go to bed. Of course weekends are better. No time schedule, its more relaxed, we do art projects, go to thrift stores or the park.

I push through because I have no choice!!

[SomethingClever]

I live alone so really only have to worry about myself and keeping up with work / my apartment.

Get up at 6. Shower, get dressed and then rest for a few minutes before getting up and working. Work consists sitting at my laptop, typing emails, contracts and making sales calls, which I can usually do without taking much of a break until lunch time. Sometimes lunch consists of going to the store and getting soup, which is often my big outing for the day. Other times it's making a sandwich here or eating leftover delivery. After lunch I usually rest for a half hour to an hour and watch some tv. Then it's work on until 4 or 5.

Occasionally I need to take a break and lay down for a few minutes because I'll feel tired of sitting up or dizzy.

After work I either drive and get food if I'm feeling wild or have food delivered. Then it's rest for an hour or so to digest, and then its work out time. Ride my recumbent bike until I feel like I can't do anymore. (I'm up to 20 minutes without feeling like I'm going to puke if I keep going. The goal is to keep building up.) After the bike I watch TV and do some arm weight lifting and really just see how long I can stand as some kind of orthostatic training. I can sometimes go an hour before I need to lie back down, which is frustrating because after 5 minutes in the grocery store I'm still dying.

Then it's bed about 10 pm and repeat.

[SomethingClever]

I too just want to commend those of you who are going to work, taking care of kids and cooking dinner and doing all that. Taking care of myself is work enough these days. Fortunately my job is letting me work from home, as I pointed out that I wasn't getting anything done if I was feeling horrible all the time. If I hadn't had enough time built in already proving myself with them, I don't know what I'd be doing.

[roxie]

You're really lucky, something clever! I've tried to see if the were any real wahm jobs with a goal of working towards that but I haven't found any.

Traci, that's so hard. Sometimes you have no choice but to do things & feel miserable bc of it. I hope all your hard work pays off, you are so strong!

[bebe127]

Most days I feel crappy and hate that my children have to live in my "prison". A lot of people say they have good days and bad, mine are usually bad; it just depends on the degree. I try to be positive, but unfortunately you've caught me on a bad, pity party type of day. Anywhoo, I'll tell you my typical day...

I homeschool my two highschoolers. Since they are both teens, they are pretty self sufficient. I used to teach in a public school many years ago, however haven't worked since my first child was born. I was diagnosed with POTS almost three years ago. Haven't really found any answers or treatment. I am on meds, but mostly still feel like poop. I digress...back to my typical day... I wake anywhere from 7am to 8:30am (don't set an alarm as there is no point anymore). I have a cup of coffee while I clear email and check web. I take meds at 8:30am. I eat a yogurt and a banana every morning as it is the only thing that doesn't make me want to hurl. I get the kids up and we begin school. I do math with them individually, and then they are off to work independently. While they work, I check papers, update transcripts and gradebook, and generally make sure that the kids are doing as they are told. I clean up the kitchen, begin laundry (two loads, twice a week) wash, fold, put away. I work on the poetry class I teach at a local homechool coop. I teach every Friday for an hour for 12 weeks. My children attend four classes each for two semesters of 12 weeks. I don't drive very often, or never if I can help it. My DD is driving age, so she usually takes us where we need to go. I do spend much of the day in bed (we even do Math in my bed). Lunch usually consists of leftovers or whatever the kids can scrounge together. Sometimes they cook something together. I feel nauseous most of the time and I just eat to live. Nothing ever sounds good and I rarely have an appetite, so lunch for me is hit or miss. I take my afternoon meds.

I am usually busy on the computer with school most of the day. When ever my hubby calls to tell me he is coming home (anywhere from 12pm-7pm) I clean up any mess from the day, straighten the schoolroom, livingroom etc., and take my shower. Hubby usually takes care of grocery shopping and meals, I am very blessed that way:) Many times he and the kids do a bunch of cooking on the weekend and either freeze it or put in fridge so I just have to stick it in the oven at dinner time. Sometimes I can manage a crock pot meal or make homemade soup.

We eat dinner around 7pm. We watch some tv and about 8:30pm, I go to bed. Take evening meds at 9:30pm. I don't sleep however, I watch Netflix (unfortunately, sometimes until 2am). I am exhausted, but can't get past the tinnitus (constant crickets) in my ears so that I might sleep. I finally turn off the Nook when I can't keep my eyes open any longer. Then, before I know it; it is 7am and time to start all over.

I've always semi joked that it is a good thing that I am a stay at home mother that homeschools. If I wasn't, I'd have to quit my job and homeschool the kids! Kudos to those of you that continue to work and/or raise children.

Trying to stay positive and not go crazy...

(can't find spell check, so please forgive any errors:))

[lfreem02]

Misstraci – Sounds like we have some things in common. I am guessing you live in Atlanta too since you mentioned MARTA. I feel bad every day, but I have to function as if I don’t.

I get up around 6:30am, and get myself ready. Take a handful of medication (Midodrine, Florinef, and supplements). I then get my daughter up and help her to get ready and out to the school bus. My husband drives me to work since I am too lightheaded, fatigued, and brain fogged to handle it. I work 8am – 4pm, and then head home to cook dinner, and help my daughter with her homework. I try to do some form of exercise every night before going to bed around 10:00pm. I take my showers at night, and get everything ready for the next day to reduce how much I have to do in the morning. Nights tend to be a little better for me. I spend Saturday doing housework and grocery shopping, and my own homework, and then spend Sunday recovering to get ready for Monday.

[AllAboutPeace]

This is a good question, Kat. I think it's helpful for us to hear each others stories so we know we are not alone.

I wake up anywhere between 8:30-10am. It takes me about an hour before my body is ready to move out of bed. I feel like my body goes into a type of 'hibernation' at night - I don't get up at night to use the bathroom and don't need to go when I wake up (which I always thought was odd given the amount of water intake - 2 1/2-3 L - I have through the day). Luckily for me, my son is 12 so he can do his own thing in the morning (at least in the summer - during school my husband helps).

I feel very fortunate that we have great neighbors and kids in the neighborhood for my son to play with. When I am up for social interaction, I sit on my front porch swing (with my feet up) and someone from the neighborhood usually pops by for a visit. I can't drive or shop (because of my symptoms), so I rely on my husband to do all of the grocery shopping and really whatever else outside the house that needs to be done. I'm well enough now that I can function a little better around the house (often can prepare meals and can do some light housework - which I couldn't do at all before). Everything I do is a 'modified' version of before i.e. a stool in the kitchen for cooking; a small fold-up stool for the car so I can have my feet up while going anywhere; sitting on the floor to dry my hair, etc, etc. I do need to lay down or sit alot to rest or reduce symptoms throughout the day and my standing time is quite limited.

I do push myself to go out (even if it is just for a drive while others do errands,or to my husbands ball game etc) whenever I have the opportunity (which is usually a few times/week). If I have an outing or doc appt planned, I will wash my hair the day before because showering and washing/drying hair - plus an outing is just not going to work. I also need to rest prior to going anywhere and I know that I will need recovery time when I get home. Depending on the outing, that can vary from an hour or two up to a day after. Every outing requires gatorade, water and usually a snack of some sort, a place for me to sit (with feet up), minimal walking, etc. I remember when going out to dinner was a nice treat, but now it is soo much of a chore and I know I'm going to feel awful so most times I just opt out. Healthy people say to me all the time: "I would go insane if I had to stay home all the time like you do." , so I explain to them that it's different when you are sick (at least for me) because I never feel well enough to want to go out. I told someone a few days ago, to think about what it feels like to have the flu and the last thing you feel like doing is go shop, hang out, to dinner etc when you feel like that. That seemed to really register with them, so I'll probably use that one again.

I do pop on the recumbant bike whenever I can for a few minutes (7 or less at a time seems to be my max) and push myself to keep moving around in short spurts and do more around the house whenever I can.

Re: childcare. I know it's easier for me because my son is old enough that he can do some things for himself. Kids are amazing though. I have worried about the impact that this illness has had on him (especially the early days when I was really sick) and how it has changed our relationship, but in the end we can only work with what we have...so we just try to make the best of it. I've been very careful to try to minimize this as a burden on him in any way, but he's naturally a very helpful kind of person though, so he's always bringing me what I need before I know I need it. I've always been very active with him and that part has been very hard because I can't do any of that stuff anymore. Last week, I took a sturdy stool for me out to the driveway where he was playing basketball and told him I was going to try to play a game of "21" with him. Well...I was so blurry eyed and pre-syncope after the first basket that I had to stop after a few minutes...but that was after I somehow managed to sink 8 baskets in a row from the stool...so he got a great laugh out of that.

My days are all the same, too. Still waiting for a good one...

[misstraci]

ifreem02...... yes we sound so much alike. I do live in Atlanta area. PS, if you have good drs around here please let me know. I've been on the search for years now with no luck!

[peregrine]

AllAboutPeace - if it helps, I grew up with a chronically ill mom who couldn't do much at home besides lie on the couch and talk or read or do puzzles (recurrent cancer plus chemo plus illnesses). In some ways, although I wish she hadn't been so tired all the time, I think it made me more ready to be an independent adult and (later) to be more accepting of my own chronic illnesses. It was tough watching her feel cruddy, but I don't recall ever feeling like she was letting me down or wishing that she could do more - it just meant I learned to be independent a little earlier than most folks my age. It sounds like most folks here who have kids (especially kids without dysautonomia, unfortunately) do worry (of course!) about the impact on their kids, and that many of those kids cope pretty well with having a chronically ill parent. (I also saw a therapist of my own for most of my childhood, which helped a ton; if it's affordable for folks here, it can help some kids adjust) Tricky stuff. I'm glad to hear other folks' daily schedules and coping strategies!

[AllAboutPeace]

AllAboutPeace - if it helps, I grew up with a chronically ill mom who couldn't do much at home besides lie on the couch and talk or read or do puzzles (recurrent cancer plus chemo plus illnesses). In some ways, although I wish she hadn't been so tired all the time, I think it made me more ready to be an independent adult and (later) to be more accepting of my own chronic illnesses. It was tough watching her feel cruddy, but I don't recall ever feeling like she was letting me down or wishing that she could do more - it just meant I learned to be independent a little earlier than most folks my age.

Peregrine: Thank you!

I really appreciate you sharing your wisdom about this - it is very tough to think that you are letting your kids down, so it's helpful to know that you didn't feel that way. I'm sorry that you had to go through all of that as you were growing up.

[azmusiclover]

Since this last flare, my typical schedule is pretty set now. I wake around 9, spend an hour in bed waking up, have a handful of saltines and then get dressed. (check email, etc) I get up and greet my daughter's bus and see which therapist is coming by, then I do phone calls and make appointments for the kids or me, deal with whatever issues the schools are complaining about. I take care of other paperwork, try to do a load of laundry, work on schedules all while sitting down/resting etc until the boys get home from school and then their one on one's arrive. I help with dinner, homework then chill with my hubby and play some poker online or chat with my friend on the east coast until we go up. I shower with help if it's a bad day, then usually fall asleep around 1am. I am very very lucky though, we have an au pair and we have a lot of help with the kids because they are all special needs (autism, various delays, medical issues) If it was just me I don't know how'd I do it. I feel bad that my kids have seen me go from being "healthy and active" to the more sitting around sick mommy, but they know that I do my best for them every day, and that's all I can do. I am really hopeful that once I pull out of this flare that it will go back to being "gone" for another 12 years like it did this last decade.

[Angela]

I get up at 6:15 a.m. and usually my 2 and 1/2 yr old wakes up same time. I drink a gatorade, take 1mg clozenapam and potassium and get my son his breakfast. He sits on the floor with me and plays swords with my eyeliners while I put on makeup and pin up hair. Then I get dressed, get my son dressed for daycare and wake up his dad at 7:00. I get my stuff ready for work (lunch) and boyfriend drives us, drops off son at daycare and me at work. I work 8-4 primarily seated. My symptoms (adrenal rushes, dizzy, vision issues, irratability, tingling sensations etc.) comes and goes throughout the work day, always worse if it is a stressful work day. A coworker currently drives me home where I walk or drive to daycare to pick up son (its only about 300 feet away, in my neighborhood). Then I talk to my son about his day, make a vodka gatorade, take vitamin B, magnesium, D3 and calcium, coq10, and sit on porch or by the pool watching my son and boyfriend play, until it's time to make dinner. I make dinner seated on a stool. Then feed son, watch some t.v., and go to bed around 9:00, take 2 more magnesium pills (I think it helps make me sleepy) Day starts over again the same. Weekends are no better, my son will not sleep in and my boyfriend is not a grocery shopper or a cook so braving the grocery store I hate, it makes me supersymptomatic. Can't do all the garage sailing, concerts, daytrips up north and fun stuff we used to on the weekend anymore. But my boyfriend does 90% of the cleaning (he is a clean freak) and I try to handle the laundry. On superbad days I sit on the couch and do basically nothing....tell the boys to eat leftovers. I do feel bad for both of them for having to live through this with me. WANT THE OLD ME BACK!!!!

[jknh9]

I try to get up between 9:00 and 10:30. I set an alarm, but it usually takes me about 20 minutes to summon the energy to get out of bed. I eat breakfast right after, with decaf of half-caff coffee, take care of the cats, kind of "space out" for a while as I try to get dressed and do hair/makeup. Then I usually work a little (research work from home) for an hour or two depending on that day's workload, and fix some lunch. I take supplements with lunch and drink water and iced tea (usually unsweetened iced green tea). After lunch I work some more and do some housework such as laundry or cleaning the bathroom or mopping if I feel up to it. I check the garden in the afternoon. Mid-afternoon I exercise for 30-60 mins, usually a cardio type DVD (lately I've been challenging myself with Bob Harper's Inside Out Method series). HR often up in the 190s during this, and afterwards I have to rest for a while so HR can come down. Usually takes about an hour to get back around my regular HR (70s-80s). Work a little more, depending. Start dinner to have it ready shortly after my husband gets home around 5:30. On nice days, we take a long, usually slow, walk at a nearby park. I shower at night because hot water in the morning makes me faint. I go to bed around 12:00 but often wake up in the night feeling very nauseous with a high HR and end up watching something on TV for a couple of hours.

About once a week I meet with my boss, which means a 3 to 4-hour meeting and a 45 minute drive each way. I can't do much before I leave for this meeting because I know I'll start to feel very sick at his place. I usually can't do much at all the next day either. I fidget a lot during my long meeting and drink something with electrolytes like coconut water or LifeWater. I also take a light snack with me like Bel Vitas.

I try to do most of the housework, but some days I just can't do it. I'm worried that my work from home job as a research assistant isn't going to last much longer, and I don't know what I'll do then. I was offered a teaching position at a university last year but there's no way I can handle that right now. I'm glad I don't have kids but I have a lot of bills and I get stressed about being able to stay afloat. My husband is super helpful and is very understanding when I don't feel well. I'm much better than I was at this time last year but I still can't handle a full-time job. On days when I absolutely have to get up before 9 or so, I feel terrible.

[NMPotsie]

Wow. Some of you have some very busy lives, illness and all. I'm impressed.

I get up about 8 and take my bb and nexium with a heavily salted poweraid or coconut water. Then I lay in bed until the meds kick in. Get up about 9 and get ready for work. Go in at 10 and teach my classes. Come home about 1 and take a nap (a must) and eat lunch, and take more meds. Go back and teach 4-5:30, come home and do email, prep for the next day, etc. (usually on computer until about 7 pm). I only work M-W, so Thursdays and Fridays are reserved for research, projects, and meetings, which I go in for if I have to and stay home if possible. Drink a lot during the day, drive to work (only about 6 minutes away), and watch tv/rest most of the evening. I do 45 minutes on my rower, yoga if I can, and walk the dogs if it's not too hot (usually about 10 pm because this is when I feel my best). I try to exercise as much as humanly possible, but some days it just doesn't happen. Go to bed around midnight, after more pills.

I am lucky because I have a very supportive husband and a live-in housekeeper who does all chores, laundry, cooking, etc. If I didn't have her nothing would get done because I don't have enough left in me to do any of that. My husband will actually yell at me if he "catches" me doing dishes or laundry. I never appreciated him so much as when I got sick. I've been infertile my whole life, so kids weren't a big issue for me (and he already had 2 from his first marriage) but I definitely don't know how some of you do it with kids. My hat is off to you!