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How Many Of Us Are Unable To Work From Pots?


nikigrl8883
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i was just curious as to see how many of us cannot work becasue of this illness? seems alot of people in here can still work at least part time...i dont even wanna think about work right now.. i tried to continue working when i first got ill and didnt know i had pots and i felt as though i were dying and had to leave work twice finally i gave up on it...my boss said when i had to go home and i was standing there she started to see my eyes go back into my head ...how

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Twice I held down part time jobs for a few months. Both times I lost the job because of flare-ups that kept me out of work for too long.

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I pushed to remain part-time for about 1 year after diagnosis. I still couldn't handle a part-time sedentery job with the ability to keep my legs and feet resting on my desk all day (with the boss' permission).

I haven't worked for 3 years now and I do not see that changing any time soon.

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I am unable to work full or part-time on an consistent basis. However, I have found other ways to have a meaninful, productive life. I am now a professional songwriter (a lifelong dream) which is something I am able to do primarily at home (and through the internet, thank goodness!). I have my husband and two sweet kids, and when I can, I volunteer in various capacities. So, no I am not the the therapist I went to school to become but I still use that degree everyday in my personal life. My point is that life did not turned out as planned (it rarely does) but I am still pleased with where I'm at (minus the stinky health). So, keep faith.

Carmen

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I've been unable to work since this illness started after getting mono 4 years ago.

Lisa

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hmmm good question. i don't have an actual job, and even when i was in the marine corps, truthfully i really didn't really work after i really started passing out. i would go to work if i felt like it and if not then i would just nap in my 1st Sgt's office or the staff NCO lounge.\. they knew i wasn't a maligering type and that i really did feel bad. at this time, i help people out when i feel like it and i get paid sometimes but i don't ask for pay. just odd job type things when i feel like it. but no i don't have a "real job". there is no way i would be able to really work. yesterday for example, i was helping my aunt with her business and i was there 12 hours but i slept 8 hours and only helped 3 hours. no job would let me do that when i felt bad. i get bad migraines which cause me to sleep a lot or to have insomnia. if i am having insomnia i am no good cause i can't think, and if i am asleep i am no good because well you know, i am asleep.

dionna B)

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I kept working for 18 months after diagnosis due to finances and the belief that I was going to get better. Eventually my body just gave up and I have been at home for 10 months. My doctor is pushing for me to return to help with mood etc, but I just can't see how I can hold down a job. I have 3 kids and it is nice to be around for them, but I would prefer to be working or volunteering on some basis.

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I work, but I have days when I dont know if Im going to make it through. I can usually tell when I get up if its going to be one of those days. Luckily I was off today. I had a very rough night last night and I know I wouldnt have made it in today. I kept Gabby home from school and we just lounged around all day.

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I was a stay at home mom for 12 years and thought since my kids were getting older I might get a part-time job. I had to quit after less than a yr in March 06 because of POTS symptoms. That is when my crusade began to figure out what was wrong with me. Now that I know I have POTS, I think the way the doctors treat the disease(not taking it seriously)makes me feel like I SHOULD be able to work. We really need the money and despite the fact that I was only making $7.50/hr, it was a little extra. Funny, though after not working for so many years I was real tentative about whether I wanted a job or not(way before I got sick). Some friends told me, your husband will be begging you to quit in no time; by the time you pay for gas to get there, meals out, cooking less, time away from 3 kids, etc. is really isn't worth it. But, I did make friends and enjoyed being around the animals. I've thought about going back to work part-time but I'm honestly scared to death. Like someone said on this post, what if I'm having a really bad day. Last night for example, I couldn't sleep. Was up till 2am so slept until 1pm. Didn't want to, it just happened.

It is really nice to have that luxury to do that. I'm afraid that it may not work out and then I'll feel guilty about quitting, feel like I failed, etc., so I just choose to stay home. Don't you guys agree though that no one, even family that lives far away and doesn't see you often, has no idea how life changing this disease can be? I sometimes wish I had what they originally thought, cardiomyopathy or Addisons. Nothing more serious than POTS, just something that at least most doctors know what the heck it is and consider it a real disease.

A little sympathy wouldn't hurt either. Sorry for rambling, Karen

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kexia,

what do you mean by flare ups? theres periods of time your normal? lucky you lol i guess imno tthe only one who cant work but with me its everyday if i stand i get sick

I don't think I've felt normal in years, but I go through periods of time where fatigue and a little morning dizziness are my biggest complaints. During those times I am capable of working. However, if I catch a cold or push just a little too hard I am right back in that bed for weeks at a time. Because of that I can't keep a job, no matter how understanding my employer is.

And don't count yourself out just yet. I've had this for years and was completely bedridden at first. It takes a while to find a treatment that works, even now I'm still hoping for a miracle drug to come along and grant me some stability.

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karen, yes i know how you feel about the doctors thinking pots is not a big deal its awful when i go there the doctor always says are you working now and i always say no then he says gee i wonder how much of this is pots and how much is depression or anxiety and i wanna scream when he says that yes obviously now i have depression and i am anxious about this illness but thats not what stops me from working its the physical symtpoms of pots i am dying to work but i know i cant in this position not normally anyway...so i just dont do it

karen, yes i know how you feel about the doctors thinking pots is not a big deal its awful when i go there the doctor always says are you working now and i always say no then he says gee i wonder how much of this is pots and how much is depression or anxiety and i wanna scream when he says that yes obviously now i have depression and i am anxious about this illness but thats not what stops me from working its the physical symtpoms of pots i am dying to work but i know i cant in this position not normally anyway...so i just dont do it

and i know what you mean about fmaily not understanding to they just cant really understand becasue there not in our bodies

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