pots and working

[sonshine456]

I am coming to terms with the fact that I am going to have to change the course of my life. I'm in my 20's and have come to the realization after years of dealing with POTS that I'm not going to be able to move forward with my intended goals for graduate school because I won't have the stamina. I have decided on a different profession that I can move forward with by taking classes online...I don't know if I'll be able to handle that profession down the road either but it's more of a possibility than the other profession I had intended on going to school for. So I have a plan for that. I've been putting off moving forward with either school or work because I've been thinking that I will start feeling better and i'd be able to do what i wanted. SO I'm at the point now that knowing I'm not going to be able to do what I had initially intended to do with school I need to get a job while I do the online courses. I'm curious to know what other people with POTS do for jobs. The only thing I can think of that would work for me personally would be to work from home so i can lay down now and then. Medical transcription is the only work from home job that i know of that's legit. I would just like to know what others do for jobs because I'm having a hard time figuring out what in the world I would i would be able do. I'm tired of waiting for things to get better so i can move forward with my life. I need to do something now. Thank you for any responses

[morgan617]

I'm sorry, I was a nurse for 30 years and that's all I know. I obviously don't do that anymore. I know there are people on the board that do work, so hopefully you can get some ideas. morgan

[Gena]

I know this can be difficult. I am so sorry you're having such a hard time. There was someone else on the board not too long ago asking many of your same questions about how to work from home. I am fortunate enough to be able to work out of the home full-time at a hospice agency who is very understanding of my illness.

Here are just a few ideas to do from home that I found on a work-from-home web site...

clerical, medical billing, transcription, computer, assembly, data entry, typing, internet, mail order, envelope stuffing, word processing, mystery shopper, paid for surveys, surf the web, freelance, telecommuting jobs.

You may also want to do some more research on the net or look for telecommuting jobs on monster.com or something. Best wishes to you and welcome to the forum.

Gena

[lalalisa]

Hello!

I definitely understand your struggle. I'm 25 and was planning on going to graduate school when I got POTS. I had many dreams that I've had to give up or at least put on hold (it's hard to decide what to do with them sometimes).

I'm also looking for a way to work from home. I am hoping to begin teaching piano lessons in my home this fall but other than that I don't know what to do either.

What type of classes are you going to take on the internet? What is your new degree going to be in?

I hope you get some answers,

Have a good day,

Lisa

[LindaJoy]

Hi, everyone. Sonshine 456, your entry is soooo timely right now. I just quit my job today. I was a freelance magazine editor. I worked from home. I didn't make any money at all to speak of, but I enjoyed the work. I quit because the company I contracted with became very unbearable--lots of internal problems. Anyway, my degree is in English (took me six years to get it since I had health problems during my college years) and writing. Right now, I know I can't hold a 40 hour a week job because of my POTS. I don't even think part time outside the home, so Sonshine, I'm like you. What can I do? I'm struggling with feelings of uselessness. I want to be able to monetarily contribute to my family, plus do something that I enjoy and that makes me feel like I'm doing something to help others. I just don't have the stamina to do too much at once. My editor job was perfect, but it became too stressful, and right now, I'm in a POTS hole and can't handle the stress. I agree with Gena that there are tons of on-line opportunities out there, so that's where I'm going to start. Sonshine, what is your degree going to be in? I'm sure, whatever it is, you can surf the Internet and find on-line, stay at home, computer work in your area of expertise. Let us know how it goes. It is frustrating, when your mind soooooo wants to work, but your body won't cooperate. Hang in there. Know you're with people who understand.

LindaJoy

[ramakentesh]

I have worked right through my POTS problem. I was going to work even when i was so sick that most of the time i felt like i was on a different planet - dizzy and mentally confused and trembling all over.

SInce the doctors couldnt find anything, i just told my bosses that i had a thyroid problem but i didnt know what was happening for a year and a bit.

FOr me, i find that work and crowded places where you can get easily over stimulated or where you have to be completely on the ball and must rely on high energy levels always make me feel worse.

Work is a struggle some days, other days since ive started to improve and have increased my salt have been a lot easier.

I work in an office environment that can be stressful at times, but not physically draining.

That being said, the meetings under neon lights and all the staring at computers makes my more dizzy than usual.

Does anyone else find neon lights, computers and busy crowded environments make them feel worse? I did reead this in the symptoms page on this site so i assume its true for others as well?

[Ling]

I am a technician in the Entomology department for an International Research company. I work with insects for a living. I LOVE MY JOB. My health is a pain in the butt. I came to work no matter how bad I feel. I know if I don?t I will just spend the whole day in bed and do nothing. My one doctor has advised me to never stop working. She said I would land up bed ridden. I fight this with all I have with lots of praying in between. I personally agree with my doctor about my work. It keeps me going. I read an article about people who stay home that they are sicker than people who work. This however is very personal and each of us differs. Today this works for me and I hope that I can fight this for many more years to come. Just fight and go on with life. I fit the weirdest things in my life now. I go for my flu injection when I am on leave so that I can spend the day in bed afterwards. Our bodies are so exciting. Ask Jessica about this topic. She has it all wonderfully balanced and runs her own successful company from home. Not to mention being a full time mom and wife, plus the bundle of joy on the way.

Choose a career that you can see yourself doing for many years. I wanted to be a C.A and I am glad I did not study to be one. I love Entomology much more.

[MomtoGiuliana]

It is important for all of us to realize that we are all at different places with this condition. Some of us never get sick enough that we are disabled, others do get that sick. I love to work and love my job but when I was very sick, there was NO WAY I could go to work. I could barely walk or sit upright. For months I was really unable to do the basic things that would be required to work--drive safely, have the strength to put my daughter in her car seat, walk from the parking lot to my office, sit upright for more than 1/2 an hour at a time without rest. SO, while I do think with POTS it does make some sense to push yourself (and I did plenty of that when I did finally go back to work) there are cases where this is really impossible. My doctor recognized that, and helped me go on short-term disability.

Regarding working at home--I think there are more opportunities now than ever due to the possibility of telecommuting, and the possibilities offered by the internet and computer technology.

sonshine456, please do not give up on your dreams! But at the same time, it is good that you are trying to be practical by chosing something to study that is more likely to lead to a job your body can handle--ie., a job that requires a lot of standing and lifting might not be suitable.

I wish I had more concrete home-based job suggestions for you. I hope you are able to find something that works for you for now, and hopefully you will be seeing improvement in your condition as time goes on.

Katherine

[Ernie]

I have been fainting since the age of 7 but I became disabled 4 years ago.

When I was a teenager I was a swimming instructor and lifeguard.

Later on I had a desk job for a big firm. As time was going by I could not travel by bus anymore because I could not stand long enough.

I became a massage therapist and psychotherapist. I had my office in my house. Then 4 years ago I could not work anymore. I could not sit more than a few minutes and did not have the energy to listen to my clients even lying down. I had to give up my career.

I have had 8 specialists tell me that I will never be able to work anymore. So, I do puzzles, watch TV and write on this Forum. I am still searching for a doctor who will be able to improve my quality of life.

Ernie

[Brwneyedchica]

Sonshine,

I too am in my twenties and have recently gone through the same struggle as you are now. It's so very hard to accept your limitations, and change your career goals and your dreams. I'm still working on that myself. I had wanted to be a nurse, (an RN) and have been struggling through classes and work for several years. I came to the conclusion that I won't ever make it through the 5 rigorous semesters of clinicals that are involved. My hope now is to make it through 3 semesters of clinicals and be an LPN and work with children in a doctors office. I too thought about medical transcription. It does sound like a really great option. The appeal of working at home is great, when you feel icky most of the time. I currently work in a hospital as a unit secretary, thought i've missed so much work i'm grateful to still have a job. I've taken online classes and they are great! It's wonderful to work at home in your pj's when you aren't feeling so well.Don't give up, keep looking, you WILL find something that you enjoy!

[wareagle]

I'm with you on the job issue too! I'm 28 and actually a licensed Speech Language Pathologist and hope to someday be able to return to it..I do miss it a lot. I've also thought of trying to find something I could do from home..I'm not sure I'm up to it yet..but I thought when I start to feel a little stronger it would be a good start to getting back into the work force.

I did a search on yahoo to see what I could find..I agree most of these sites look pretty shaddy!

I did find one though that looks very legit..it has actual links to companies that hire contracters to work from home. Some of the categories were..med transcription, data entry, telemarketing, research, grading national exams..ect. I checked some of the companies out and they appear to be reputable...some even required college degrees.

If you're interested shoot me an e-mail and I'll give you the name to the site! I don't know if I'm allowed to post it and I don't want to get Nina mad!!

[Amy]

Two week ago I was diagnosed with Pots after passing out in the street, breaking my nose and orbitz around my left eye. This certainly explains a lot of things over the last three years. I spent 11 days in the hospital and am back at work struggling everyday. I am not sure I can do it. I told the company I did not wish to get short disability. Now I hope I did not make a mistake. I am seeing a specialist, an electrophysiologist which is a specialty in cardiology. YOu probably all know that.

[vemee]

I am at the point where I am probably going to lose my job as a firefighter. I've been out of work on sick leave for 8 months and it is the pits because all I feel like doing is lying down. When I first got on sick leave I tried to remain active but got tired of getting sick everydat and then not getting any sleep at night due to excess adrenalin. It took me 4 months to find a doctor who knew what pots was and even he did not know much about it. He said I had mild pots and this was because I was overweight. He also said that if syncope in a burning house bothered me I should get another job but he was not going to give me meds or disability. I went to Cleveland clinic after I saw him and they said I had severe pots. I also found a new doctor in Richmond that has treated pots and understands what people go through. The problem is my work is keying off what the other doctor said. I have an advantage over most people in that Virginia has a law that says if a firefighter or policeman has heart or lung problems it is the presumption is that it is work related. Orthostatic hypotension has been upheld by the courts here as a heart related condition. The trouble is the county I work for automatically denies these claims and makes people go through the court process which can delay things for a long time. Anyway I have a lot of time to think of what to do next if I lose this job. I will have to go back to school because after 12 years of firefighting and the age of 48 it is going to be hard to get hired in a job with much of a future.

[dizzygirl]

SOnshine,

wow, i can relate to what you are going through. I am only 23 and was diagnosed with pots when I was 20, 3yrs.ago.

Why pots cam on suddenly and drastically impacted my life, I had a very busy and full life, until one day in March i got sick with broncitus, and then I woke up one morning and could not sit up without feeling like I was going to hit the deck. It was horrible.

I went from working about 70 hours aweek and going to college full time to doing absolutley nothing. It sucked big time.

It took about 7-8 months to get a diagnosis, then an other 6-7 months to get me stable enough to function.

In may of 2003 I was able to return to school, for medical transcription.

This past October I had to quite school, I became very sick again,

I dont mean to sound discouraging..

My ultimate goal is to one day become a nurse, but I have come to terms that I may never be able to do that, so I am thinking about my second goal in life, for a career. Socail worker. I was going to school for medical transcription as a quick way to get a degree, so I could have a half way decent job.. while I pursued other dreams.

SInce I have been so sick lately, I have put my schooling on the back burner for now.. I know that I have to focus on my health right now.

What I do is set small goals for myself, that I know that i can achieve,so that I can still feel somewhat productive and like I am accomplishing something with my life.

I would say dont ever give up on your dreams, sometime your dreams are all you have on the really rough days.

Re-evaluate what it is that you want to do.

To all of you that have been able to hold a job while having pots, that is wonderful. I dont know how you do, but that is wonderful!

Linda

good luck to you sonshine!

[MomtoGiuliana]

dizzygirl and others--POTS can be anywhere from mild to completely disabling. I just want to say again, b/c I have now experienced both extremes of POTS -- I've been both very disabled by it and also very mildly affected by it--that there is a whole range of function out there in POTS patients. I just don't want ANYONE to compare themselves to others with the same diagnosis and feel guilty or have any negative feelings about themselves b/c they find they don't have the strength or energy required to work at a job. It is enough that it is frustrating to be at that stage (hopefully it is a stage) in your POTS "journey", without feeling you aren't measuring up somehow to others with the same condition. I am only saying this b/c of an undercurrent I am sensing in some of the messages here--which are basically also very positive. I'm not criticizing anyone either!

Just want everyone to always remember that as much as we have similar symptoms, we are all different in how severe these symptoms are.

Katherine

[ethansmom]

I agree that we are very different when it comes to how much we can handle. Like Katherine, I have also experienced both extremes when it comes to my POTS, and although I haven't been able to work full time in over 3 years, I am doing my best to make my likfe as great as it can be.

I am 23 years old...got POTS when I was 19. My boyfriend and I had just gotten our own apartment, I was working full time making great money and going to college full time in the evenings. When I got sick I had to give up everything- work and school- for a while, and I thought my life was over. I was much more than surprised when I started to slowly improve- learning to manage my symptoms and finding a good doctor really set me up on the right path. TO this day I have ups and downs, but overall I have remained stable enough that I am grateful for every breath, every day.

I had a little boy two years ago and we are expecting again in June. POTS has been a blessing for me because it has allowed me to be a stay at home mom- a decision we were forced into that we now wouldn't change for the world!! I have set up my own clothing resale business at home, and David (my boyfriend of 5 years) also has a web hosting business that he runs in addition to working full time outside the home as a Website Manager. Financial situations have been tough, and I have a lot of debt from doctor bills and credit cards that ran up when I haven't been able to work, but all in all I am very happy with the way things have looked up. There was a time when I would have never imagined I would feel happy again...which is why I am saying all these things!! I got my Associate's Degree last May and I am working on my Bachelor's now- I go to a strictly online college which allows me to work at my own pace all the time. I am on break right now until the fall to make time for preparing for the new baby, but I've learned that I have to take my time to make these things happen.

All of us probably have something to look forward to, and it can be very hard to see that when we are stuck in POTS holes. Being young and just starting out in life, then having it taken away, hurts in ways nobody else can imagine unless they've been there. Working is a huge issue for all of us- I think if we could all work full time without the effort that it takes most of us, we would be happier than any other working people in the world Just be patient as time passes, and be optimistic about your future. There are so many little things you can do that can make a big difference!!!

[guvna2004]

I Work as a Customer Servce adviser for a TV Studio in the UK. Just Sitting down and answering a phone using a PC. Pretty easy, very stressful. Its not a job id like for ever, very lazy, id prefer to keep active. I just have anxiety attacks sometimes at work, thats got me sent home a few times. But i own my own house, im 20 yrs old and i need cash, so i have to work.

[Kitsakatsa]

I am new to this board, this is my first post. I have had pots for a year and a half. I was diagnosed with florid pots last March. Working is hard. I feel so supported to read your posts. I fight back tears every day and I force myself into work. Every minute I have to coach myself to stay there. I have really bad nausea. Every day I wonder if I made the right decision about working and not going on disability. I am fortunate to have a very understanding boss and I work in a hospital where people really care about each other. She let me work 4 hours a day initially, and now I am working the full 8. I have a desk job and the office is contained so the movement and visual stuff is as much a problem. I have a door and sometimes I close it and lay down for a few minutes with my feet up. My doctor is down the hall and he will see me the second I call. We have an IV center and I can get fluids there. I was 6 months into my master's degree when the symptoms started and I finished it a few months ago. Fortunately it was an online program, so it was very hard but not impossible to finish. I have an incredible family and support system.

I just know that I have the best possible set up for a patient with pots who wants to keep working. Without every single one of these factors I could not do it. You have to find what works for you, what you want and fight for it every single day. I think it is worth it. I don't know why I have been blessed with such a good setup and the symptoms have tapered down enough to allow me to work. If anyone finds things that help them feel better at work- please post it!

[sonshine456]

thank you all for your responses. i personally am at a point right now where it would be really difficult to go in to a workplace and be a "normal" employee. There's days when I can barely walk and have to lay down flat numerous times so I don't pass out. That's not something you can just work through which brings us to the big question of who the heck would even hire someone like me and if there are people who would...what kind of job could a person like me do? It would be wonderful if something could become clear to me....sooner than later. I really do appreciate all of you who have responded. thank you