How Many On Forum Are Able To Work?

[yogini]

I can work. I was out on disability for a few months when I first got sick. I took a self-imposed leave of absence for a while, but now am back at work full time. It's much easier on my body when I don't work, but I am managing OK. I really enjoy my job. But, if I had the choice, I might stop working or do something part-time.

[lizb]

Hi there, yes since I was DX I have been able to continue working full time. Last year I lost only 1 day due to POTS. I work as an adminstration assistant with Social Work Services, Children and Families Team, which involves Child Protection, so my job is very stressful. However, I 'm fortunate in that if have a POTS attack, I am able to go to a room and lie down for as long it takes for me to recover. This room was put in place by our Health and Safery Officer to allow me to lie down when ever I felt "POTSY". I am very grateful for this room, otherwise I would have lost more days off work.

Take care all

Liz B

[babettess]

I currently work part time (15 hours per week) from my home but am not sure how long I con continue. 80% of my work can be done at home between the phone and the internet. (I provide family support to families who have children, ages birth to 5, with special needs.) So mainly I'm on the phone with parents or researching something for them. I can do this laying down if needed and on my own time schedule which is great. The other 20% is providing trainings and workshops and attending meetings. This is where I get into trouble. I don't drive because of the dizziness and the off balance feelings I have so I have to arrange for transportation anytime I have to go somewhere. (Cabs/taxis/subways are not among the landscape in rural Maryland. )

I also do bookkeeping at home for a small business for about 4 hours per week. This is also at my own schedule. I am trying hard to keep working but often wonder if I would feel better if the stress of trying to keep up with my work was gone. I continue to think about applying for disability and know at some point it will probably become necessary.

Hats off to those of you who are able to work fulltime! I can't imagine getting up 5 days a week and going off to an 8 hour job.

Babette

[mjan]

Interesting topic and I appreciate all your responses as well. I am working full time. I am 60 and working full time is really getting to me.

I had to take a leave of absence from my previous job in 2006 for 3 weeks. It saved my life. BUT I was also seeing this amazing nutritionist..who specializes in ART or Autonomic Response testing. Its not your typical nutritional who looks at your diet etc. HE tests using the autonomic system and first detoxes any toxins he discovers..then builds up the system after this very thorough eval that looks at ALL your systems..your symptoms and all parts of the brain.

I had horrible fatigue that eventually I coud not even hold up my head. I took naps at work and that bought me a few more hours but finally my body just quit on me. I was not diagnosed with an autonomic dysfuntion but they thought i had MS then.

Anyway.. my fatigue..GONE..my cognitve dysfunction..GONE..my balance problems.. GONE. Now..I am not following what I was taught..I cannot afford to see him now as I am trying to pay for all the testing and evals right now. So this is all my doing. AND fatigue has returned.

So.. all I do is work..then count the days until I am off..get rest rest rest.. until yes..go back to work and do it all over again. Its been draining.

I do NOTHING else now. My autonomic symptoms are growing..and more frequent now.

I have a terrible reaction to the SUN now and heat. It makes me dizzy..disoriented and weak when I am driving. I just purchased every kind of shade possible to protect myself AND keep the air on all the time. Its helping some.

I am waiting for my job to approve me working 36 hrs..they denied it so I came up with a compromise. I would still work 5 days but one of them 1/2 day so I am available for their needs and yet I can rest in the morning. I am crossing my fingers it helps.

[kjdube]

I'm able to work full-time and its hard but I want to keep trying.

All I can do is work tho, it takes everything I have so I can't do much else.

[mae]

Hi,

I have never been able to work and never knew why I've been hired by many but whenever I'd start after about 2 hours the lighting and standing ,seemed to cause many symptoms and I would fight the feeling to finish the shift and I'd actually force myself to go for a few months then I just couldn't take it no more. I would say I've worked 3 years in total my whole life and I'm 30. I do receive disability which I immediately (3 months) due to my lack of employment history past doctors visits with these bizarre symptoms and was DX with generalized anxiety disorder and depression which I believe was a misdiagnosis of POTS.

Mae

[ramakentesh]

I can work most of the time. I have mild POTS most of the time but i get boutes where it is moderate to severe. During these boutes workis a nightmare - im fighting not to faint most of the time rather than actually really working and meetings are a nightmare. But once i get out of these bad spots, i can work, although i can NEVER sit still and I tremble a lot.

My boss knows the situation, but Im safe in my job because i know my work pretty well.

If you work, expect to have to take sick leave quite often and you may find that stress isnt always good for POTS.

I have to realise that because the illness is unpredictable I may one day have to quit all work but i hope this doesnt happen. All indications are that mine isnt a progressive form of POTS.

[ramakentesh]

Oh yeah Mae!! neon lights and POTS dont mix!!!!!!!!!!!

[Adria]

I am 28 years old and also finished a graduate degree that I wonder if I will ever be able to use. I received my law degree from UVA while battling POTS. After e-mailing my last paper I had EMS workers at my door to take me to the hospital since my BP was only 50/45. I was hospitalized for a week and even missed my graduation. Since then I have been unable to study for the bar and unable to work. My focus and memory are awful. I was just recently awarded disability after 2 years of reapplying and waiting. The judge took one look at my medical records and said I have been disabled since I applied back in 2007. I did not even have to go through the formaility of a hearing. I feel awful about being on disability at such a young age and having to hope to recover enough for part-time work since full-time seems completely out of my league right now. I try to remain hopeful about one day working and having a "normal" life but some days it can be pretty tough.

[runningshoe]

I have interstitial cystitis and POTS. I work about 12-15 hours a week and have 3 kids at home. I am dragging tired somedays but I have the perfect job - I teach preschool. We make frequent trips to the bathroom and lie down when we are tired!!

[LJENN85663]

I am also one that is able to work. I work full time as a Nurse Case Manager for a Hospice Company. I realized very early that I could not do 12 hour shifts at a hospital, or even 8 hours running around. My job now requires me to drive most of the day between patients, and since I see patients in nursing homes or at their home I sit a majority of my day. I think that if I hadn't chosen this path in Nursing I would be in the same position as most of you. I work 40-50 hours a week, and depending on how many hours, work is the only thing that I feel up to doing. Most days I come home and take at least an hour to an hour and a half nap in order to just function the rest of the night.

[fighting4health]

I work full time. My job is very active and outdoors. My symptoms are getting worse by the month and I'm afraid I'm going to have to transfer to an office job. I think having to walk all day has helped me a lot and I'm afraid it will be counterproductive to give it up. I go to UCLA in a few days to see a new specialist. I'm hoping to get a confirmed diagnosis and some treatment. More than anything I just want to know how much worse this is going to get and if treatment can reverse it.

[ramakentesh]

Sitting still and watching something is the worst for me. If im in a chair at the computer it comes on pretty quickly, and then once its arrived im dizzy all day to some extent. On weekends, if I keep relatively active and move around more its not as much of a problem.

[Guest tearose]

Does taking care of ourself count as work?

I only wish I had applied for disability help before I got progressively worse. If you do progress slowly, you also are unable to work as much which means IF you ever do need to stop work, you will not have enough funds to live on...IF you qualify.

I have difficulty thinking of all the things I lost...

I use to fly all the time, I did work in developing countries, I lectured, taught classes, gardened, hang-gliding, bike-a-thons, kept a tidy home, entertained...

This process of deterioration has been slow but steady. It is an incomplete question you pose...IF I am able to work it is my first priority to take care of my body. I can get worn out from a short period of activity that will take four days to recover from... These activities are not "work" to some, it is to me. I also try to volunteer once in awhile...seems easier in the warmer weather than colder.

[Stace915]

I work but I work freelance so that when I am up to it I work 40 plus hours a week and that my schedule is very flexible... now that its getting warmer out and more humid my days at the office and working are less and less. Currently I am on day 3 laying in bed and not able to do much. I really enjoy working and have always been a work a holic but I have had to leave jobs because I was missing so many days and was sometimes out for weeks at a time. I am not sure how much longer I will be able to keep working but in Ohio you have to be out of work for a while before you are even considered for disability and if you get it, it would be barely enough to cover half of my bills never mind rent etc. so I don't know how I would be able to survive without working. I live with my boyfriend but in this economy there is NO way he can make enough to support the both of us, and its even harder because I am the "bread winner" of the two of us so it makes it even harder for me. Ugh... gotta love POTs and dysautonomia!!