How Debilitating Are Your Symptoms

[lgtaylor100]

Hi everyone,

I've never set up a poll before so I hope it works. I've noticed through the past several months varying levels of activity among forum members. I am curious about how debilitating your symptoms are. Please check off as many as apply as well as posting information about your level of functionality.

Lynne

[lgtaylor100]

I'm not able to work. I can socialize for short periods of time if I am sitting. I have a great deal of exercise intolerance and become very dizzy in stores so I do very few errands.

[Guest maia]

For me it depends on the day. Im not able to work or exercize, i can usually walk though if i keep a good pace and dont overdo it. If im not feeling well generally, im pretty much house and couch bound-the worse the cold etc the more i just cant move. Same thing if it is hot out. If im feeling well, i have to be careful not to over do it or im toast the next day. On good days i can run a couple errands or socialize outside the house for an hour or so. I have to be able to sit whenever i need to and i usually need a cart to lean on while walking around in stores. I can go out and socialize if i can sit(slightly reclining) and dont need to eat, and if its not hot out. I can not stand still or in lines at all, ever. Lifting things is difficult and stairs usually suck, lol. If its hot out, all bets are off. I'm considering asking my doc if i can have one of those handicap tags to hang on the visor or my car for hot/bad days-there are some days i can get to the store, but once there i dont have the strength to walk across the parking lot to get to a cart i can lean on. I also generally have to give myself a couple hours to do nothing but rest after i eat-and usually cant eat during the day because of this-oddly this is better in the evening.

[Christy_D]

I marked unable to work for my son, but it is unable to attend school. He has been on homebound schooling for 2.5 years now.

Christy

[jknh9]

I am mostly housebound because of dizziness, fainting, and nausea that all seem to come and go. Some days are worse than others. I can do moderate exercise and if it's cool enough outside I can do a moderately paced walk for up to 2 hours or so (although sometimes I have trouble sleeping after that). I work part-time from home and I am able to set my own working schedule. There is just no way I could handle a "normal" full-time job right now. I hope to be able to at some point.

[mwise]

Hi. For me it depends on the day too like Maia. I have good & bad days. I take it one day at a time. I am able to work, no exercize. I have a desk job. I can usually walk though for short distances and don't overdo it. Sometimes I have to use my rollator or wheel chair depending on how I feel. I do steps with limits. If I am not feeling well generally, I am pretty much house, chair or couch bound-the worse the heat etc...the more i just need to rest. When I am feeling well, i have to be careful not to over do it or I am exhausted the next day. On good days, i can run a couple errands, shop & socialize outside the house for a couple of hours or so. I have to be able to sit whenever i need to and i usually need a cart to lean on while walking around in stores. I am best in the morning, but by afternoon & evening I usually need to be sitting & resting. I can go out and socialize if i can sit and don't need to eat much, and if its not hot out. I can not stand still or in lines for very long. Lifting things is difficult and stairs wear me out. I stop on steps & hold on to the railing to get up them. Down is much better. I also generally have to give myself a couple hours to do nothing but rest after i eat-and usually can't eat much during the day because of this. I eat more in the evening with the help of Domperidone & small meals. I have to continue to stay hydrated especially with sugar/salt water mixture night & day to help keep me keep going along with everything listed in my signature line. I say allot of prayers and are thankful for this forum, friends, family & co-workers that understand. This is really a challenging disease and I pray they find a cure for all of us

[HopeSprings]

This is a toughy. I am "able" to do errands/shop, but in small doses and with discomfort. Same with socializing - if I have to I can force myself, but it's never comfortable. So I checked off that I am able to do these things, but also checked off mostly housebound.

[cmreber]

I actually have the blessing of working from home, so fortunately, I am able to work. (My husband and I run our own construction / pest control company and I do the office portion of that, plus I am also a writer.) I used to work at the local hospital as a phlebotomist, and if I was still doing that, there would be no way I could still be working. Anything early in the morning is out of the picture for me, as is anything strenuous or where I would have to stand for a long period of time. I have good days and bad, though since I've been on beta blockers, I have had a much easier time of living my life somewhat normally. Unless it's a bad day, or incredibly hot out, I can typically run errands and go shopping okay. I tried to get back into kickboxing, but that was too much for me right now. Yoga, however wasn't too bad most of the time (until it got too hot for the summer, since they have no air conditioning in the building I go to). Just recently I have started doing some mountain biking on very even terrain for short periods of time, and that has been going really well! In fact, I feel like if anything it's helping, especially with blood circulation in the legs. (Doctor says I still have to stay off motorcycles though )

[lizababy]

I put that I am able to work and do my errands. However, it is very day to day. I was housebound for four months earlier this year and will go for days to weeks at a time where I am housebound. Much of the time, I have to cut my day short and create my own schedule for work. Fortunately, my job is part time and I am able to do this. I have been on the hunt for a new job that I can do from home.

[potsgirl]

Just like a lot of the other posters, I checked that I could do moderate exercise, socialize outside the home (on a good day, and only between 10am to about 1 pm, since I nap from 1:30 for about an hour or so if I'm lucky), I try to stay up without a nap a couple of days a week. Exercising is only on 'better' days, I really have very few 'good' days, and shopping/errands are also on better days and I can only do one or two at a time. No carrying of heavy items, my sig-other gets the major groceries, but I can pick up a couple of things as needed or get a prescription. Then there are the days that I can't drive and am just in the house not doing much of anything....Difficult poll to answer, for me.

[Katybug]

I am unable to work and mostly unable to exercise (I might get to walk the dog for 15-20 minutes 3-4x/wk but only if it is less than 70 degrees.) If I am having a "good day", I can leave the house for errands/socializing for 2-3 hours but have to be very careful not to stand still anywhere while I'm out or that could mean a sudden acute attack that ends the outing (like getting stuck in line at the bank...I usually have to go home immediately after layng in my car for 20-30 minutes before attempting to drive again.) On a "bad day", I am not just house bound but usually bed/couch bound for the day and struggle to get up just for the essentials (bathroom, drink refills). Going up steps is always a struggle. I often have to lay down after taking a shower and getting dressed to go somewhere as I start to shake badly even on the good days. I have been unsuccessful in cooking a meal from start to finish for the last 2 1/2 months. I can make easy things like cereal, sandwiches, heat up left-overs but to actually try to cook dinner hasn't worked. I have had to come back to living with my parents so that I am not living alone because the "bad days" have gotten bad enough that living alone is a safety concern right now. Mom has had to finish the dinners I attempted to cook at about the 2/3 mark. I own a horse that I amunable to ride at all but am now even struggling to groom when I check on her because that involves lots of standing, bending, and repetitive motion (thank goodness she is at a great facility with wonderful full time care!) The good days are about 1-2 days a wk, the mediocre to bad days usually cover the other 5-7 days of each wk.

[Olive]

I can work because I have to, but that leaves me unable to do anything social or fun on my off days. All I do is crash.

[GingerA]

I have days when I can go to lunch with friends or do the grocery shopping but it really depends on the day and the weather. On hot days (or very cold days) I usually am limited to the house. I am much better now than I was this time last year. At that time I was pretty much bed bound. I even had trouble breathing. Because I try to keep my activity and diet under control I can do more now.

[DoozlyGirl]

I am unable to work due to the unpredictability and severity of my crashes. My good days average 2-3 days per week, that allow me to grocery shop, go out for coffee/tea with a friend, cook a meal or have dinner out. I usually have 1-2 days per week where major crashes (and likely a migraine)keep me in bed all day. The rest of the week is mixed with lesser symptoms but I usually don't feel well enough to shower, yet alone leave the house. I only drive on my good days and then stay within a mile from home, monitor my blood sugars and eat a granola bar before driving.

[sandymbme]

I am unable to work, and almost entirely housebound. My social life is mainly either internet based, or those friends who are willing to come play at my house. I was forced to give up my car at the end of last year, and I will not be renewing my driver's license when it expires. (I think losing the independence that comes with driving was in many ways the hardest loss.) I have three different chronic illnesses, though, and they do NOT play well together. So I wouldn't want someone to look at my abilities and think they are doomed because they have POTS. Ironically, my home health care nurse has vaso-vagal syncope, and while she can't work in a hospital environment, she does fine in home health. So it is possible to have a wide variance in abilities. Even among those of us who have only the POTS dx to deal with, have a great variance in day to day well-being.

That being said, I feel blessed beyond reason. I have an amazing man who is foolish enough to want to marry me next year, knowing full well what he is signing on for. I have incredible friends who have stood by me for years. I have a wonderful and supportive church. I have a feline "boss" who gives so much comfort and laughter I really can't imagine coping without her. I also recently discovered that I might be a very good candidate for a service dog, thereby providing me with a really easy way to get around my fiance's insistence that I don't get to have a dog until the cat dies! (Seeing as how she is only 2 and a 1/2, this would have been a long wait!) Every day I find more things to celebrate, which I do my very best to focus on, as it makes life so very much easier to cope with!

Sandy

[Tuesday]

As others have said, it really depends on the day. On a good day, I'm pretty much perfectly normal. I can go running for miles, work, shop, play, socialize. But then out of the blue, I'll have a bad day where I literally can't get up out of bed.

I think the real question here is how many good days vs. bad days do each of us have. Right now I'm blessed to have far more good days then bad.

[iheartcats]

I am able to work (sometimes I feel like I'm just hanging on)...but that means I can't really exercise. I have to break up household chores on different evenings. It's annoying to not be able to 'just clean all at once' like my friends do.

I don't do a ton of socializing. Just a bit, as work takes a lot of what energy I have.

I am pretty sure I couldn't work without my meds.

[lgtaylor100]

Thank you everyone for your responses and votes. What I gleaned from the poll was that not able to work/ able to work was two to one. For each person that is able to work there are 2 that are unable. Many of us socialize and do errands and shop but it is uncomfortable to do so. Many people have good and bad days; for me they are bad and worse days. In short, most of us struggle to do most of the things that we do. I think it would be interesting to find out how many days in a week are good and how many are bad and I will start a new poll for that.

[janiedelite]

If you're trying to get an idea of the percentage of dysautonomia patients that are disabled, keep in mind that only the more severely ill patients would search out a forum like this. There are probably patients who are able to manage their symptoms adequately and wouldn't feel the need to be a part of a forum like this.

[wyominglacey]

I am currently staying with my parents (who both work and are gone during the day) during the week and go home on the weekends (with my mom who drives me there) (3.5 hours away) I do this because my fiance has a job where he is not in cell range or easy to get ahold of during the day if I need help, or get an "episode" or "spell."

I am a stay-at-home-mom with a 16 month old baby. She is very active and on the go ALL the time. On good days I can keep up with her "ok" and make sure she has everything she needs. Sometimes on a bad day I need some extra help.

I am able to go shopping, but I don't like to by myself. It's helpful for me to have someone else go along, especially with my baby. I only go when I absolutely have to and it's a challenge for me as I get dizzy. short of breath, and racing heart most of the time.

These things are very frustrating to me, because I am young still and a new mom who just wants to enjoy the time I get to spend with my little girl!!

It is helpful to know that there are others out there with the same issues!

[Elfie]

I am able to work, although I am not working currently. I was a full-time student for the first four years of my illness and then worked-- however, my temporary position is up and I am looking for another job. It is difficult to find a job that will accommodate my needs while using my skills in this economy. Although I did quite a bit of standing at my last job that was moderated by the fact that I worked in a climate controlled office-- 63 degrees inside. That and for the most part I could sit or squat when needed.

Shopping is really difficult for me-- I do it, but it completely wipes me out.

Moderate exercise is one of the things that keeps me sane. I love to swim, recumbent bike, and even hike when it is cold. However, I was a athlete prior to pots and what I do now is difficult and pathetic compared to that. My cardio also insists upon it-- no changes/help if I am not keeping up with my end.

The catch-22 is that if I am working and managing to keep myself fed and in clean clothes I really don't have the energy to do anything else. I have no social life to speak of and my free time is spent being frustrated because I don't ever have a break or a chance to enjoy anything because I am usually so exhausted that I can't even follow a TV show or movie-- let alone a conversation with a friend or a trip out of the house. Reading and doing anything to further my education also has gone down the drain.

I guess I am lucky because for the most part many of my previously debilitating cardiac-type symptoms have been managed to some extent and that means I am able to keep it together enough to get through the day without fainting. However, despite physically being able to push through the sickness, nausea, discomfort, lightheadedness, ect. I still deal with HUGE amounts of cognitive dysfunction. Basically the meds can't mask that my body is still struggling to be upright. I am able to work because my last job was very systematic and my days were well laid out by my supervisor-- on bad days I could just kinda stumble along mindlessly.

The cognitive disfunction, confusion, exhaustion and more minor symptoms like nausea, lightheadedness, heat and cold intolerance, are accompanied by chest pain which keeps me up at night.

Basically, I deal with all the same symptoms I did when I was first diagnosed and fainting several times a week, but cardio meds now allow me to push on through all the rest of the symptoms because I know I am not going to fall down. It doesn't leave me with a good quality of life though.

[abnel]

I probably could work (part time or casually) at the moment if I found the right job (not an easy task!), didn't mind having a poor quality of life and feeling sick a lot, but have chosen not to for the present time. I was diagnosed a year ago now, and after pushing through a stressful job for the first 2 years of my illness I just need a complete break. The last 6 months of my job were at times horrendous when I felt on the verge of collapse. A common theme I have gleaned from this forum is that while many people choose to work, it can come at a price. I really hope to work again and have some sort of a quality of life, but I don't know if it's achievable at the moment given my current health.

[iheartcats]

I can work because I have to, but that leaves me unable to do anything social or fun on my off days. All I do is crash.

I feel you. I don't have a choice right now and have to try to get in my work while I can. I hope and hope I get better rather than the other way around. But if it goes the opposite (please no!), I have to earn enough credits to try for SSDI. And I hope working while you are so sick at least shows one tried. But. I'm hanging in there. Just.

[Frugalmama]

I'm on the verge of housebound. I do sporadic work from home for a crafting business I started, but there's no way I could do anything with regularity or for more than an hour at a time. I have three kids under five that are home with me, and we have full-time help so I'm never home alone with them...thankfully I don't pass out, but the acute episodes I have render me unable to get up from lying down. I get to church every week, and usually out for a brief time one other day during the week, but only because my husband drives me and babysits me while we're out . We can't go to movies, eat out, etc., and I am limited to about 45 minutes of coherent time while sitting and trying to visit. It's frustrating for sure, but I am so thankful to be blessed to have my kids home with me during the day...I can hug them like crazy, even though I spend most of the day lying down!

[Allene]

I thought I posted in this thread, but I guess I started to and then never did. Hmm...

My symptoms don't vary much day to day as much as they do month to month. My symptoms come and go, and while I've never felt totally recovered during the times when I've felt symptomless, there are definite periods of feeling better and definite periods of feeling worse. Usually feeling okay lasts a month or so, and feeling bad will last 3-5 months. That's just a rough estimate. Since the onset of my symptoms, the bad times have gotten worse at their peak.

When I am in the throes of a bad spell, I am unable to work or go to school, shopping is difficult, daily chores are almost impossible, etc. I mostly stay home in bed and restrict my movement as much as possible. If I do get out and do something, it's the One Thing I do that day. I might go for a 30 minute shopping trip, and then come home and crash for the rest of the day.