Can anyone on this board with dysautonomia still work and lead a relatively normal life...or are we all doomed?
I start Nursing School next week and I'm feeling quite discouraged by all the folks on disability that had to quit their jobs.

I am losing my military career, but that line of work requires 24/7, 365 days a year capability of deployment. There are other options for me. Many others are hampered by their illness yet not disabled by it. I don't know the extent of your illness or symptoms, but don't succomb to "doom" thinking. This is a different life than I wanted, but whether or not different is better or worse is up to me. If you can handle the load, press on. Only you will know if it is too much, no matter how many here, like me, may not be able to work at all. Stay encouraged. These autonomic illnesses are as unique in their severity as each of us who has them. I wish you nothing but the best.

If you feel like you can handle nursing school then you probably can. I think when this illness disables us to the point where we can't work, we can feel that level of severity within our bodies without question, and school/work isn't even a thought or an option. At least that's how it was/is for me. I'd love to return to school for my Master's degree, but there is not even a fantasy in my head that I would actually be able to do that right now...I can't even drive on my own or go to the grocery store without assistance, and my standing and walking ability is about 30 minutes or less at a stretch. A 4 hour day is like a 12 hour day for me, and it's very obvious to me that I can't work or have an 8 hour day at this time. I think you'd know in advance if things were really that bad for you just by feeling your symptoms each day. Of course this is just the way it goes for me--it may be different for you! Good luck in school.

Gillian

I think everyone is different in how this affects them and what they are able to do to both manage the symptoms and function in real life.

I do work. I am very very fortunate that I work from home and that my employer is very very understanding (because I'm an over achiever and have always been the 'superstar').

When this first hit me on Valentines Day this year, I really struggled to do anything. Now, I'm improved and mostly functional. I still struggle with any type of lengthy walking (i.e.. stores) so I adapted and have a walker or use the scooter at the grocery store.

BUT I do realize that my symptoms are not as severe as others on this forum.

And another BUT....I think I read on another of your posts that this might somewhat new...it can get better!

For me it was 1)figuring out what was wrong 2) water water water 3) atenolol to calm the heart 4) limit sugar, caffeine, etc 5) address vitamin deficiencies 6) exercise program.

On the exercise program, when I first came down with the severe symptoms, there was NO way I could even think of exercising or walking or anything. I was so exhausted and short of breath from ANYTHING. But as I slowly improved from the water, diet changes, vitamin supplements, and medication.....I started having more energy. So I started slowly exercising at 2 minutes a day. Now I go to water exercise 2 times a week and a physical therapist 2 times a week and I am feeling stronger.

I still have to manage my energy and realize when I'm pushing myself too far because I will go backwards. And some days I feel like giving up because I've gone 2 steps forward but then go backwards.

But I look back to Feb and see huge improvements. I'm still at 60-80% of what I used to be...depending on the day. But I am functioning and fighting forward. I'm working 95-100% of my hours instead of 70%.

Although its a case by case basis - there is hope for improvement even when there isn't a hope for a cure.

As for nursing school - I say do it if you can but don't push yourself tooo hard. And be kind to yourself, if you can't do it physically then realize its not within your control and not a reflection of you.

Good luck!

I am lucky enough to work from home. I realized earlier this year that if I didn't work from home I probably couldn't hold down a full-time job anymore.

But I stagger out by 8 AM and do concalls from my easy chair or my bed, and by 10 am or noon I can shower and leave the house if I really need to. But the days I've had to head in to the real office or (god forbid) get on a plane and I just crater, I take days to recover.

Luckily I've worked here a long time and my company is so distributed anyway it doesn't make much difference. And I volunteer for on call work and work nights and weekends because that part I *can* do so I try to make sure I balance that with the fact I can't / don't travel very much.

Nursing school would be way too hard for me but everybody's different. My only fear for you would be standing a bunch. I think of nurses as on their feet a lot.

I agree with Gillian, if you think you can handle it, you probably can.

I work part time, I'm on my feet a lot too. I think I need a better treatment plan then just increased salt, fluids, and midodrine as my heart still jumps up into the 140s without me doing much of anything.

AzMombie - could you try increasing how much time you spend on your feet a day? Just to sort of test and see what your limit is, and the affect of doing so, are for you? If needed it would be better to find the problems and work on fine tuning any treatment now instead of later.

hi -
i also work and i actually work with animals, so some of my job involves being quite physical. my line of work has been the bane of my existence because on one hand, i am very passionate about it and don't know how i would survive through all this emotionally without my work, but on the other hand, i constantly feel horrible while working and fear that i am just making myself worse and worse. which, i have (don't know if it was because of my work), but my disorder has taken me over and i'm quitting my job and moving back home so that i can focus on getting better. BUT, i am still in denial that i have anything wrong with me, and can't sit down and allow myself to rest for like two seconds, so i'm planning to go back to school too. i am definitely in no spot to be offering anyone advice about working or attending school, because i am the worst example. i am worse off physically than i was before and i am always stressed. but when i think about giving up my animals, i just want to die instead. so i don't know what to do either. i'm hoping my upcoming move will offer me some balance.

AZMombie,
I was in Nsg. School when the dysautonomia was finally "named and claimed" so to speak. I had symptoms of things since childhood, didn't realize anything was actually wrong with me until Anatomy & Physiology ( I had been convinced that every child experienced a lot of pain, migraines, etc...), had my doctor do x-rays, and the deluge of uncovering the extent of my abusive past began.
The dysautonomia was problematic for me only in the last year of Nsg. school when I was A. in an intensive electrical/microwave environment in the college telecast room, and B. working 12hr shifts on the floor. I had severe migraines after every lecture in the telecast room, and started having plummeting BPs with the 12hr shifts - however, I was diagnosed correctly and the treatment I started at the time controlled the symptoms, and I was able to continue any 12 hr shift (day or night) in any clinical area.
There are so many diverse areas you can work in once you are a nurse, that the school should accommodate your "disability" if need be, They cannot discriminate against you. I was a floor Med/Surg/Cardiac/Tele/Ped RN upon graduation - which was my dream job; however, I worked one year, went in for a myelogram - had an anaphylactic reaction and went from functioning O.K. to "you are going to die." Well, I did flat line, but got sent back, and gradually made it back from "Pure Autonomic Failure" and bedridden to now. [that was 9/99] I've had to mix up my nursing career into different venues as my illness has waxed and waned, but I have remained a practicing nurse since 10/00.
I currently have a rewarding career being a respite nurse for two DDD Pediatric patients. I have been an ACLS Ambulance Transport Nurse, Legal Nurse Consultant, and Middle School Nurse/Sub District Nurse.
AND I am proud to announce to the world that, today, nine months to the day from my father-in-law's discharge from a "rehab" wing at a local long-term care facility to subsequent death from injuries and neglect - despite my demands for follow-up x-rays and neuro consults after the first fall he sustained there ad nauseum... the investigator closed the investigation today and ALL my allegations were substantiated and they are going down for multitudes of state and federal violations! I fought first for his life, then the VA for his life after discharge, then to get the medical examiner to re-open the case because he did not look at all the facts correctly, get the revised death certificate, to get the investigation, to get the violations, to getting an attorney to finally take the case. 9 months of fighting the system, NEVER, EVER, give up! Take a break, regroup, and go at the wall from a different angle - esp. when you know that you know that you are right! I believe my struggle for my own life against doctors that were wrong, combined with my legal nurse consult. experience, combined with going up against the ambulance co. that wrongfully terminated me and winning appx. $12,000 representing myself, all prepared me for fighting for dad, and hopefully, saving life and limb of patients at that facility right now who are ALL being checked for neglect by a team today from the State of AZ Long Term Care Division.!
We still can have our little to big victories along the way. My advice, to salute NIKE, is "Just Do It!" That's how I got through Nsg. School. Never sell yourself and your spirit out by not at least trying. My best to you, C.

You guys are absolutely AWESOME. You're not required to answer these posts, yet you do it anyway. I'm so glad I found this place.

Bubbleboy and the rest, thank you for the encouragement.

Gillian, I feel like I could go to school and do fine if I didn't have to do a whole lot of physical activity or be in the heat much (but I live in Arizona - yuck). Luckily Nursing is usually an "indoor job". What I worry is that this "disease" will progress though and I will have to quit school. I'm not sure how progressive it is so it scares me. I know that I am better in some ways, but feel worse in others.

WantMeBack, those are the same steps I have been taking to get better. I'm trying hard to find answers, I am drinking drinking drinking fluids, I'm on Nadolol to calm the heart and Florinef to bring up the BP, and lots of vitamins/herbs. The only things I need work on is sugar and caffeine (love my soda) and exercise. I find exercise very uncomfortable and I hate it, to say the least. I've always been thin, but still I've never been a big athlete, and with this now - well let's just say I'm always on the bench. My electro-cardio doc really encourages exercise though. But easy for him to say!

Strange_wings, I like your advice. I do need to try being on my feet more and testing the waters. I do light house-cleaning, grocery shopping, tend to my kids, take short walks - some days I do better than others but that seems to be the way this "disorder" goes. It's just those 12-hr Nursing shifts that really scare me!

GracieTiger, I agree. When I think about giving up my Nursing career I just want to die. I have worked too hard for this and everything is in its place now for me to go through the program and I will just be torn up if I can't complete it. And extremely disappointed in myself and ashamed like everyone will look down on me like I failed. It's quite stressful in so many ways.

And CABeck - good for you! Your story is VERY encouraging. And you're right, there are many areas of Nursing to work in - full and part time. So if I can just get through school, I can worry about the work later. And if there's hope, I'm going to try it - day by day I suppose. I want it too bad to not try. I just hope hope hope I succeed.

I feel I am getting the best treatment I can right now. It just takes so long to get answers, if you get any at all, and tests done and medication trials...and all that takes alot of patience, which I have very little of.

But anyway, I thank you all for your responses and I can take any ray of hope I can get right now. There have been many days, like today, that I just cried and cried with fear and hopelessness, and thoughts of just giving up. I know noone knows what lies ahead of me anymore than I do, but it is still nice to hear that some people are able to cope with all this well enough to live a fairly good life, and some even still fulfill their dreams.

THANKS AGAIN

I am struggling with this question presently myself. I am recieving disability benefits through insurance currently. I work in early childhood education and was working as a school director and often putting in 12plus hour days. I went back to teaching since that is theoretically a 7 hour day and that didn't work out either. I faint and having an unconscious teacher just won't do.

I'm looking into working from home options but so far no dice within my field.

I can do a few hours at a time as long as I sit/recline and have my saline IV--I have a port. Though then I am exhausted.

I did grad school with this though I was not as bad as I am now. I was in the hospital about twice a semester but I made it through. For me, I can push myself I just typically go too far or perhaps too long and end up in the hospital.

I'm sure you can do it, but you may need accomidations and a plan for taking it easy or easier periodically. Good luck!

azmombie - i just thought of one more thing that we need to get through and improve. patience!

i'm not a patient person by nature, even after raising 3 kids on my own (LOL). but i am having to learn to be patient and that things will happen in time. whether it is health improvement or the housecleaning or people understanding me.... all i can control is my attitude and one piece of that pie is patience.

keep on working to improve...even when its frustrating that you don't feel improvement yet. its right around the corner!

I made it to the top of my field at a young age. I loved my career as a prof. My ours are flexible...even that is too much. It is gonna kill me. I spent a semester on sabbatical, then medical leave and this past year, paid caretakes (thousands to work). I have no other income. I need my insurance. They are unkind to me at work, their once favorite golden girl. It seems they want me to quit, yet, my doc students stand behind me. So, to answer ur question, I could never manage a job where I punch a clock. I cannot manage my passion for which I worked my whole life to achieve, don't even care much about it anymore, but have to support this expensive disease and have no other income. Could it kill me, i suspect so. Elsa, who hasnt been here for a while is also a psychologist, and always thought I had a death wish. Maybe and maybe not. The plain truth is i am not ready to retire (that would kill me for sure) and I cant take this, but it costs money to live. I am afraid to ask for accommodations, cuz i sound too sick to work. It was no problem when I just had arthritis. Even after working in the field of disabilities what really is a "reasonable accommodation" or an undue hardship? Anyone know of any legal literature. I am finally going to the ADA office to update my file. Internal channels in a univ are always risky.