What do you do?

[JaneEyre9]

I know that several people here work or are in school, and i was curious what types of degrees/careers you are all pursuing. I'm sure some are better for POTS than others...like sitting desk jobs verses a job where you are on your feet all the time.

What do you do during the day? What do you feel capable of doing? What do you feel is too much? Can you work full or part time? Are you resting at home like I am? I'm trying to get an idea of what kind of future i'm going to be able to handle...Any advice?

[Evie]

I am doing my undergraduate major in history and minor in philosophy and womens studies. I was wanting to do psychology and then help adolescants with chronic health conditions but i could not keep up the hours involved. Its not bad though as I love what i am studying and my lecturers are so supportive. Both my parents are academics and i hope that i can pursue that line of work *thinks about the years of study ahead*

At the moment i am doing two subjects a semester. Thats 6 hours a week. I tried 11 hours last semester and collapsed in a tutorial, it was rather embarassing as all i wanted to do was get out of the room but i couldnt walk so i kinda crawled out the door heh.

I think i am getting better and it may help if i push myself so I am going to try 3 subjects next semester and thats 9 hours. *fingers crossed*

Then after that im applying for a exchange to University of Texas-Austin.... i will have to do four subjects and be on my own. I feel like its something i really need to do to gain independance but i am terrified i wont be able to handle it. (if anyone knows anything about Austin please let me know! ... i may make another thread about it, i want to know if its pots friendly or not)

My advice is keep trying. I have tried to do full time 3 times now and the first two times i had to drop out for a semester yet last time i managed to just drop a subject (psyc). I figure thats an improvement Its really heartbreaking each time you have to pull back yet i have found it really is two steps forward and one step backwards.

Atm i am very variable, the past week has been a bit rough yet i have found i can still push myself further than i use to be able to and the recovery process is getting quicker. I ran down a hill the other day (ok a short hill but still i was excited). Apart from that i avoid exercise's other than walking or stretching.

I have never had a job so im not very helpfull in that department. I feel a bit pathetic about that, 22 and have never had a proper job. I am applying to become a mystery shopper! i hope i get it, as i can choose the hours and take it when i feel up to it or have breaks from class.

What do you enjoy doing/learning?

Its so hard to know our limits .... i make plans in the hope that i will be able to achieve them, yet i try to have a backup in case they are too ambitious (it doesnt stop the emotional roller coaster of not knowing unfortunately) . Good luck with finding your limits and then trying to break them

[JaneEyre9]

Thanks Evie!

I'm really impressed with your attitude and persistence in getting your education. I have always wanted to do that mystery shopper thing. Let me know how it goes, and maybe i'll give it a shot

Right now, i'm on a break from grad school. POTS has been lurking the past year or two (though i didn't know i had it), and i've just pushed through it, but it finally knocked me down completely this summer. I haven't been back to work (or school) since. Right now i'm just trying to figure out if it's feasible to keep going, or if i should just figure out a way to earn money from home. (Not a bad thing at all...sounding more and more appealing lately)

Thanks for your reply... i think it is great to be in academics. I'm a lifetime student in my heart, so i understand

Kristen

[Dizzy Dame]

I'm an english/philosophy double major. I usually do 15 credits a semester, but this semester I've cut it down to 9. The only hobby I have left is writing poetry, and that only requires that I'm able to type.

I've been unable to do poetry readings this semester though, and I've toned down on publishing. It's too mentally taxing to keep track of who's reading my work. I'm sure I'll pick it back up soon.

I spend at least half of my day, every day, laying in bed with my feet elevated. When I do leave the house, I have a backpack full of my meds, gatorade, and salty foods. Although, I really only leave the house to go to dr's appointments and school. I haven't even gone to see a movie, or gone out to eat since I got sick, it's just too tiring.

Great question though, I'm interested to see what each of us is able to do, and how we all cope with POTS.

- Lauren

[JenniferInOhio]

I'm a stay-at-home mom, formerly a Speech-Language Pathologist. I resigned from my job 2 years ago to stay home with my daughters. If I had to, I could definitely work now...I'm just a little slow getting around for the first 30 minutes after I wake up.

What do I do all day? Clean, feed, and play with the girls. I can't clean the entire house in one day ~ it's a little much for me as I don't like my heart rate to be up for an extended amount of time. I do pretty much whatever I want except for very physical things like running, excessive stair climbing. When it's hot outside, I don't function nearly as well.

[MomtoGiuliana]

I work part-time as a planner for local govt. Primarily I work with landowners to protect their land from development by purchase of development rights through various state and federal programs. It is mostly a desk job--but involves some work out in the field. I have a master's degree in conservation biology (obtained prior to developing POTS). When not working at this job, I am busy as a mom to a nearly 3-year old. I try to keep her active and exploring with daily excursions outdoors--to farms, parks, the beach, or our backyard!

I was very sick with POTS and did not work for months from late pregnancy to the time my daughter was about 7 months old.

Katherine

[Dawg Tired]

I am a Chicken Watcher at the Mimosa Hills Chicken Retirement Village...

Yeah, really! I find the chickens very relaxing. I have a double swing behind the greenhouse, overlooking the chicken yard where I can lay down.

Well, and I'm doing a final edit on my book... "The View From The Ground"

[Eillyre]

Hi Kristen! Thanks for starting this thread; it?s so interesting to hear what everyone is up to!

I?m still resting at home, trying to get well enough to start college. I want to pursue a degree in International Development (maybe minor in history or African studies) with a certificate in Professional Writing (that?ll be interesting with brain fog! Probably get an award for Comedienne of the Class!). I?ll probably start off taking only one course per semester and trying to gradually work up as my energy allows. I?d like to eventually be able to travel and live abroad, although if that doesn?t prove realistic, I think I could probably find a desk job or work from home. Coordinating humanitarian work is my idea ? USAID, Doctors without Borders, Peace Corps, SIM, etc. I think it would be really great to work on developing and managing relief efforts, particularly in Africa ? it?s still so close to my heart.

Until I?m healthy enough for university, though, I?m busy studying at home using courses from the Teaching Company and the Rosetta Stone Language program. I can pick them up and put them down as I need to. I also read a lot when brain fog isn?t too much of a problem. I usually help load the dishwasher, set the table for dinner, and help with one part of the meal. Some days I can even get a small lunch ready for my mom when she comes home from work. My main focus is studying, however, not housekeeping; I already know how to manage that.

I was working sporadically on an editing job from home, but concentrating on making the transcriptions and so forth was just too mentally exhausting, so I?ve stopped that. I?m now gradually working on editing my parents? book about our time in Africa ? I find it much easier than the other editing work because I just have to read, as opposed to listening, typing, and then editing. I find it pure joy and as there is no time limit, I can work at my own pace.

I?ve become very involved in writing letters and sending care packages to troops over in Iraq, Afghanistan, and East Africa, too. It?s very easy if I pace myself and it makes such a huge difference in morale over there! I also like the feeling of taking care of someone else for a change!

I?ll do a little penmanship & calligraphy practice just for something different every so often. I work on some light gardening when I?m feeling up to it (I find growing pretty things very renewing) and when I?m too tired to do something else, I sit and watch the various birds eating from my bird feeder. At the moment, a little black-capped chickadee is staring through the window at me typing with a sunflower seed stuffed in his mouth! I find it very relaxing to observe their little antics.

I?m very careful to pace myself ? if I push myself too much, disaster invariably follows. I do try to keep to some sort of normalcy (never stay in my pajamas, spend some time outdoors in the gazebo, don?t spend the day watching TV, etc.), but make sure I add a lot of variety to my days to keep my mind stimulated and my life interesting. I also find it much easier to maintain concentration if I work on several things for about 10-30 minutes rather than a few things for longer periods of time. I do what exercise I can, too, whether it?s pointing and flexing my feet on the couch or walking a lap around the living room or venturing down the driveway to pick up a garbage can.

I?m not sure if I?ll ever be able to handle full-time work or college, but I?m preparing for it anyway. No matter where I end up, my life will continue to be filled with joy and beauty!

From one lifelong student to another,

Angela

[melly4]

I have a degree in medical laboratory technology, and worked for 6 years until my symptoms got bad. Now, I am a stay-at-home mom of 4 children. I home school the 3 oldest. I love taekwondo, and will be going back after being out for 5 months!! Wish me luck. I've heard the preaching about how exercise is good for POTS, so I am taking a class this afternoon. My oldest son went back last night and did okay. He was really tired and was very tachy all night after the class, but he was glad he went.

Melly

[OCsunshine]

This is a very interesting thread. It seems the folks that have replied so far are pretty active (but that's probably to be expected -the first to respond are more active and the ones that aren't able to respond can't write very much to tell us about being bedridden). Does that make sense? I know, I am confusing myself...

As for me, I have been at both ends of the scale. I have had years of being completely bedridden (*waves* to all of those out there that aren't up to responding... I have been there, and it DOES get better) and I've had times of being able to take a few classes at my community college. So my health is like a roller coaster... you just never know what you're gonna get (or maybe that's a box of chocolates...).

The fall semester last year I was able to take a class at our local community college. I did very well. Then this past spring semester I was able to do NOTHING, not even get up and walk to the bathroom by myself. So... go figure. It has to do with weather, the viruses that go around (I catch everything and it crashes me for months)...

As for my education, it's been part-time off and on for the past 6 years. I started off going to college for a teaching degree (elem. ed). Then I realized that standing in front of a classroom all day and getting little kiddy-germs was NOT good for my health. I couldn't do that, much less the 5 days/week deal that comes with it. Ggrrrr. So I decided to shoot for a major in Art, but that involved driving farther to the larger University and walking across campus a lot and I just can't do that.

So, to sum up, I have learned to be happy with my God-given skills and abilities and I use them the best I can DESPITE not having a degree, yet. I have a love for children (hence the attempted teaching degree) so now I spend a few hours each week working privately for a family (like babysitting) that has 2 sons with autism. I love it! I also run my own business called Sunshine Designs that fills my desire for art and creativity. Sounds like a lot of work, but actually I have it set up so that I keep my handmade and painted items in an Art Gallery all the time. They sell my items and I don't have to do anything except go there maybe once a month and check my inventory and I can add new items anytime I want- so that means I can paint and create anytime I want, but I'm not on a boss's schedule.

So I am very blessed to have filled my 2 "niches" in life in ways that I can handle. I am counting my blessings. Of course it's hard to answer that social question "So what do you do?" because it takes a while to explain, but... oh well... it works for me.

Looking forward to seeing more replies on this topic!

[Ernie]

Hi,

I am a professional couch potato.

In my previous life I was a massage therapist and psychotherapist.

[morgan617]

I was a nurse for 29 years..I am now also a professional couch potato and more recently a face to floor checker...oh yes, musn't forget, guinea pig for the good of all...morgan

[dawn]

I was a nurse for 29 years. A school nurse until last October. I was there for 10 years and LOVED my job.

Now. I'm pretty much homebound. Watch the dust collect on the furniture. I have no energy. Last year I did alot of scrapbooking but now don't even have the energy for that.

I am pretty good at gameshows.

Dawn

[Jenn202]

At this point I am pursuing my Masters Degree in Phycology...I do it mailny online with testing done at college.....

I spend the rest of my time running errands, cleaning the house, making lunch/dinner or whatvever falls in between.

And working on neverending slew of house projects that need to be done.....

I ulitmately would LOVE to work out of my house doing holistic counseling... Thats my long term goal...

I definelty have more energy than I have ever had since becomming ill.... Although I have my Lyme treatments to thank for a lot of that I think.

[joyce68]

I am a registered nurse, I had been a nurse for about 5 years when I was diagnosed. Looking back I had symptoms when I was younger and while in nursing school, but of course the family doctor just blamed stress. I would not recommend nursing for those with really severe symptoms of course, but I have days when I have to call in sick because I can't stand up, but then there are days when I can run my entire shift, I pretty well fall out for two days after I work two days in a row, but I manage. I 've now been a nurse for 10 years. A few years ago I tried to go back to get a degree in pharmacy, but the work load and stress of trying to work full time and go to school fulltime were just too much and I became more symptomatic, POTS, NMH. Now I am trying to start my own pet accessory business on the internet and at area craft shows. Like most of us I fight everday to keep a degree of normalcy, some days are better than others. My cardio is great he does the best he can with me and has never made me feel like I'm crazy, he was able to diagnose me as within basically the first visit. He knew it was an option for a dysautonomia, but ruled out other causes.

My only advice is figure out what you really want to do and go for it. just remember you may not be able to work or carry as many credit hours as someone with a normal system, but you can survive and thrive.

Blessed be

Joyce

oh and after I get my business off the ground I plan on going back for my masters in nursing and teaching the next generation of nurses.

[MightyMouse]

I work as a f/t behavior analyst in the public schools--I specialize in autism and autism spectrum disorders. Most of my day is either interaction with the kids, directly instructing them or the staff, and then desk work to type my recommendations and reports.

I'm also in graduate school taking 3 to 6 classes a school year. I matriculated in 2001, so I have until 2008 to finish my Ph.D. in Educational Psychology, Special Education with an emphasis in Behavior Analysis (clinical psychology).

Right now my hobby is packing postal boxes with DINET bracelets and trying to make sure the DINET is financially stable. I also make beaded bracelets, some of which classify as fine jewelry b/c they're sterling and gold, and some that are costume b/c I mix the silver and gold with different types of crystal and semiprecious beads. I recently had a shop take some of my bracelets on consignement, which was very flattering. Maybe someday I can trade my behavior analyst job for a jewelry shop

I'm also a bit of a cybergeek--love hunting down things or information using the internet. I like to learn languages. I working on Croatian right now (Hrvatski), but already speak Spanish, French, Yiddish (yes, they offered this in college and I took two full years), and American Sign Language.

I do have limitations. I can't work long days, I can't stand up for more than a few minutes without getting woozy, I can no longer directly work with kids for more than 10 or 15 minutes at a time. I need to be in a temperature controlled environment or I cannot work. I don't have much energy left at the end of the day--I often go to sleep upon arrival home, then wake for dinner, then do one task or two, and go to bed around 10. I typically don't make plans on weekends because those are the days it takes for my body to recover from what I've done all week.

Nina

Nina

[BallroomA]

Lets see....I was a professional Ballroom Dancer I just stopped that this week...my last competition I had some serious reactions that weren't good at all. I might be going back to teach Ballet to the lil ones (3-5 year olds).

Currently don't ask me how I am still standing (sitting or laying down most of the time) I am attending school full time. 21 credits (my parents won't hear of me taking any less), working at a dance store 20-30 hours a week, President of a campus organization ( I really wanna resign), and now trying to plan my wedding!!

I am stressed to my last nerve, exhausted as all ****, and the only way I function is because my finacee is a sweetheart who does everything at home

BallroomA

[AJVDK]

I am a full time Community Manager, (although I am on FLMA leave right now I am taking a week here and there as needed right now with my health.) At home I am rasing my son Blake who will be 4 years old here in two weeks! (he's growing too fast!) My husband Mark is great, I am not sure what I would do without him. Latly I have not felt up to it but, my hobbies are photography, and scarp booking my photo's. One thing I have learned is to keep fighting, I have had to quit things, and slow down, but I can pick them back up again. I am hoping that next year I can finsh off my degree. I have dropped out twice now do to health, but I am not giving up, some day down the road I will get it, when the time is right. Always hang in there, but don't over do it. (This one is the one that gets me the most!)

Good Luck,

Amy

[yogini]

This is a great topic. It's so interesting to read about everyone.

I used to work full time, but now work 4 days a week as a corporate lawyer. I missed about 3 months of work last year when I got sick. My job can be stressful, but at least I can sit at a desk all day. I had a lot of trouble getting around last year and getting to and from work was almost worse then doing the work itself. For many months, I couldn't do much more than my job, but I seem to be slowly improving. Now I am able to do some light errands and chores and can also sometimes manage to exercise and do social activities. I can't do nearly as much as a normal person, but I guess I can't complain too much for someone who has POTS.

[taylortotmom]

I have been home for five and a half years with increasing symptoms over the past three years or so. I require daily iv treatments (via my port-a-cath) to have any degree of normalcy to my life. I am an extreme case and most people do get better and do not have to have the level of treatment I do and certainly not long term. So, hopefully, I'm a bad example! While sick, (I now realize this was a dumb choice due to the consequence it had on my health) I went to grad school and received my Master's degree in Counseling. Of course, at this point I am unable to do substantial professional work. However, as a full-time and active "sick" mom I use my degree every day in some capacity. For example, today I helped out with assessments in my son's kindergarten class. I am able to do a limited amount of volunteer work a week (about 10 hours or less- usually, much less) which helps me in many ways. I have taken up the guitar and am teaching myself to play now that both kids are in school. So, is my life what I thought it would be ten years ago? No way. But, you know- it's okay. I'm beginning to see where all this is going and it might not be such a bad place afterall. Thanks for the question- I needed the lift!

Carmen

[JaneEyre9]

Thanks so much for the great replies! It's so easy to get caught up in thinking of ourselves in terms of our disorders or medical treatments. It's amazing to me that some of you are/have been nurses. That is a high stress job with a lot of standing. It gives me some hope about my own circumstance.

What i enjoy reading the most is how flexible you all have become...allowing yourself time out when you need it, but not letting it pull you down permanently.

What an encouragement to me...thanks and keep them coming!

[India]

I'm a professor at a small liberal arts college in Hawai'i. Although a lot of my time is spent in front of a computer and therefore sitting, a lot of it is spent lecturing in front of a class. I always have been a very animated person and so I tend to walk around a lot in my classes which seems to keep the POTS symptoms at bay. I've also learnt to do this, however, as I found that standing still at a lecturn would leave me feeling dizzy after about 15 minutes of not moving my legs.

The greatest difficulty for me is when I have to give formal lectures at professional conferences where the standard delivery method is to park yourself rigidly at a lecturn and babble on for 45 minutes without moving. I actually had to halt a lecture once because I blacked out!

The other major problem I have is being too tired and too "foggy" to concentrate and this sometimes makes grading and grappling with some abtuse historical controversy very exhausting (I'm a history professor).

On the whole though, I count myself as very fortunate in having chosen the profession I have under these circumstances. I've been one of the lucky ones in that I haven't had to miss too much work. But there have been days when I could not get out of bed because I was too dizzy. I've also been lucky to have a very understanding boss and very supportive colleagues who have stepped in to cover classes for me. On days I feel particularly potsy at work, I just sit down and lecture or I adapt my class so that the students work on projects without the need for me to be up there talking all the time. Again, I'm lucky that I have a job that is flexible enough to allow me to do that and a job in which I have a good deal of autonomy and not a lot of supervision.

As to hobbies, I used to be very very active before the whole POTS thing blew up. I love sports and miss participating in them as much as I used to. I have problems with hyperadrenergic excess that exercise sometimes exacerbates. But I do what I can when I feel well. I play tennis, I try to walk every day, and I've even been known to boogie board on occasion. I love to read, but find that more taxing than it used to be: sometimes I can read a couple of pages and have no idea what I just read!

I've heard people elsewhere talk about "autonomic storms:" episodes of severe POTSY symptoms which are compeltely debilitating. These are interspersed by periods of relative normality. And I think I'm one of those people who is on that kind of roller coaster. Although it flies against every grain in my personality, I've had to learn to deal with that and take advantage of the good days and not get too stressed out when I have the bad days (I know, easier said than done, eh?) I jsut wish someone could work out why these storms occur. The lack of energy I have comes not just from trying to get through every day but also doing everything I can to research this issue and to try and make my life more livable.

[faithinspires]

Dropped out of nursing school years ago, went back got medical office assistant degree, worked as a unit clerk in icu at a hospital, and as a chiropractic assistant.

Have child care teacher certification. Stayed home with the kids and did child care and raised my kids for years. Then worked part time at my mothers craft antique store. Sold antiques on ebay. Did consignment crafting-sewing. Used to be super high energy never sat cleaned whole house in a day. Now i do the basics, anything my kids need-priority. Take care of my pets. Stay on top of laundry dishes. Can clean one room a day at best. Mostly I just reserve any energy I have for my kids.

Homeschooled 2 of them last year. The oldest still homeschools. The younger attend school. Dream to improve my health enough to be able to work. Encouraged by all of those of you who can.

My oldest daughter with NCS/POTS, homeschools, works for a dance academy to pay her tuition there and dances for the academy. After she finishes last 6 credits, she plans to work and attend college. It is so interesting to hear what everyone does!

[Poohbear]

I used to work full time (although it was all I could manage....I had no social life when I was working...still don't have one ). I was a workers comp and general liability insurance auditor and loved my job. For those of you who don't know and are interested my job had nothing to do with approval of cases. (I was a "good" guy )I simply traveled around and would check the books of businesses to ensure they were paying the correct premium. It was fun and I learned so much about just about every type of business and operation you could think of.

I am unable to work now and honestly for the past 1 1/2 yrs I've spent my time going to Dr's, Clinics, keeping up with Medical bills and insurance issues, sold my house, my car and moved twice. Between that and the fatigue being so bad I really don't get much done other than the necessary housework...light laundry. You guys are my social life and the sunshine of my day

I also hand stamp cards to send to people. My church has a program where we send cards to residents in nursing homes, shut-ins, those that have had surgery, illness, new baby etc etc. I head that program up and prepare all the cards to mail most weeks. When I return from Vanderbilt later this fall I want to try making home made gift bags out of fabric and "fancy" papers and maybe sell them in bundles to try to supplement some income.

Most of my hobbies I haven't been able to engage in. Reading and cross-stitch really both my eyes now. I can't exercise anymore like I used to. I like photography but I'm not interested in photographing my living room & since I can't get out that cuts out the photography.

I hope to someday be able to finish my masters degree.

[JaneEyre9]

Pooh-- sounds like your encouragement through the cards to the shut-ins is extremely valuable work. I also think that your presence here brightens the days of many people. (especially with your poetry )

I find it hard sometimes to feel I am making a difference from lying on a bed or a couch, but when i hear the things that you and others are doing to make a difference in other people's lives, it makes me realize that though there may be limits on where we can travel physically, there are no limits on the difference we can make in the lives of others.

thanks for sharing!

Kristen