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Shine
02-25-2012, 04:38 PM
My last two jobs have been very physical (fruit packing and then housekeeping) and really took their toll on my body, so I decided that this time I wouldn't even choose a job that meant being on my feet all day, because I know what my knees are like. A sit down, easy on the body (and in my opinion, mind numbingly boring) job that I can physically manage with no worries.

So I am now a telemarketer for a small solar energy company. 2 days after starting the job I began to flare. It started with pain in my finger, probably from typing. Then my knees started to hurt...but I hadn't done anything to aggravate my knees?! And then my shoulder and my elbow and this morning its my feet. I have slowed right down...struggling to walk a normal pace, not because of the pain but because I just physically can't. I've got the feeling that I can't get enough oxygen again...my lungs will fully expand, I can breathe quite deeply (before it starts to burn..not sure what that is) but it feels like theres not enough oxygen getting into my body if that makes sense?
I'm moody, getting mini mood swings and being quite snappy.

I'm reckoning its because I sit directly under a flouro light all day and stare into a ye olde computer monitor...not one of the swish flat screen ones.

SO fed up. Can't even do a sit down job. It makes me feel so s**t about myself and my abilities (or lack of.) I'm not THAT ill...I aint dying, I don't have a disability as such, I've got all of my limbs and function relatively well...but it's just enough to get in the way and make me feel like s**t. I feel like an horifficaly overweight person waddling down the street because I struggle to walk and get out of breath. (For the record I'm not THAT fat.)

Who here works? And what jobs do you do? What job can I do? Ideal job: puppy dog cuddler.

debbie-b
02-25-2012, 07:30 PM
I work in a grocery store, where the cashiers have to do all the stocking. We have to get to work at 6am and drive the full pallets to the isle and unload it on to the shelves. Some of the items are 25-30 pounds, we do that for three hours straight, about 900-1100 cases, the whole cases go on the shelves. Then at 9am we open for business and cashier, we have to scan a minimum of 48 items a minute, it is backbreaking and fast pace.
After my 8 hour shift, I only have a 15 minute drive home, but by then, I am in so much pain, that I can barely get out of my car and walk up my driveway.
If I work the closing shift from 2pm-10pm, we have to still restock, scrub the floor( with a electric scrubber), clean the bathrooms(Yuck) and mop the bathrooms. To me the closing shift is worse, because my energy ( if I have any to beginn with), drops by about 3pm, even on my day off at home, after 3pm I am pretty much worthless.
But I somehow get through the day and cry in pain( actual tears) on my way home.
I am looking for an office job, but so far no luck, not much out there, plus I am 56 years old.
It is just a matter of time, until I have to file for disability. I just got home from work, I am sitting here in pain, I took a Mobic and in an hour I will take a muscle relaxer.
Why do you ask, do I do this kind of job? It pays extremely well, it has awesome benefits and health insurance.
Puppy dog cuddler would be the perfect job for me.

Debbie

steve.b
02-25-2012, 10:37 PM
i am unlucky that i cannot hold down a job.
i am on the disability pension.

puppy dog cuddler sounds good to me as well.

magistramarla
02-26-2012, 09:20 PM
I used to teach, which is not the back-breaking work that you guys are describing. However, the stresses got to be too much for me. I had to be on my feet much of the day, and the administration was piling on more "extra duties" and stresses every year. I loved my students, but It got to the point that I had to give it up. I'm very lucky that I could make this choice, since most of our income and our insurance comes from Jeff's job.
I now spend most days with my two cats and my dog - wish I could get paid for that!

Shine - could you switch out the fluorescent light at work to a regular or a LED bulb? I think we had this discussion with someone else lately (I think it was Rustika) - it seems that we talked about her being able to request that the employer do something about the environment. Would that be worth a shot for you?
Good luck!
Hugs,
Marla

tripLexie
02-27-2012, 08:06 AM
I wish that those of you with labor-filled jobs didn't have to deal with that. I work in an office as an accounting clerk/inventory specialist. Very rarely do I have to venture out into our pipe yard and actually move.

Sometime writing/typing will bother me. I'm also wondering if it's what causing some severe pain mostly in my left wrist ('m a righty, which is why I'm sort of confused with that..) I am thinking that my lights in my office definetly have a big impact on my well being. I've closed the blinds, but ofcourse the fluorescent lights above have to be on for me to see. And as I've told my co-worker and boss of my illness (Lupus/Systemic Sclerosis) they don't seem to know much about it and didn't seem the least bit concerned. Which embarasses me to even request switching the bulbs out on the company's dime. I think I may go personally invest into some of my own lamps to light the room to decrease the ill-effects from my photosensitivty.

E42brchick
03-04-2012, 08:17 AM
Goodness some of the jobs you guys have I could never do! Debbie-b, you are a strong woman. I don't know how you are managing all that back-breaking hard labor. I hope you can find something in the the future that will allow you some rest!

Shine,
I also have a desk job where I type and answer calls all day for a major credit card company.. the fluorescent lights give me rashes on any part of me exposed... the joints in my fingers and wrists throb from being used so much.. and I also get the "lack of oxygen" feeling you described too, but I also have asthma and my inhaler seems to help. Try not to get too down on yourself. I'm new to lupus myself and have been in what the dr has called a "huge flare". I know it sucks feeling so helpless and that you can't do anything right, but you will get through it. You did it before and you can do it again. Just like you said "you ain't dying" so don't let the lupus get to you. I know we all have good days and bad days. I wonder if the stress of starting a new job caused the flare?

SleepyInSeattle
03-04-2012, 12:10 PM
I work part-time - don't think I could swing full-time. I train horses so my job is physically demanding, but I find that being outside is good for me. I live in a part of the country that doesn't get tons of bright sunlight, so that's good. Also, I seem to react worse to florescent lights than sunlight.

I have good days and bad days, but I absolutely LOVE what I do, so I guess that powers me through. Well, that and Starbucks, LOL...

Days when I only have "two spoons", i spend them at the barn, then come home and crash - that's all there is to it. I try to be careful about what I eat, about protecting my sleep, taking my meds, etc.

But so far I seem to be in the mild-to-moderate end of things and I hope it stays that way. It seems like people do get to the point where full-time work just is not possible.

I hope you can find something that you enjoy and is not taking too much of a toll on your health....

n.mac
03-04-2012, 01:26 PM
I am the field supt for a construction company in Chicago. We do specialty work that varies greatly.We presently are working on a flood controll project called the deep tunnel(averages 375' below ground) and a series of high rises downtown which can be as high as 500' or 600' in the air. We also routinely work on bridges and tanks.

My job specifically is to set up the jobs,determine crew sizes,assign foreman and oversee the implimentation of the work. I am ultimitely responsible for quality,safety and production.

In otherwords I am a glorified baby sitter.

In performance of my job I go every where our crews go. I spot check our work for quality and see first hand that it is being performed safely.

I am now 50 and have been working in this field for 32 yrs. Most workers find other jobs by late 30,s or early 40's- I have managed to survive by becoming certified as a QC and safety inspector.

It is becomming increasingly difficult to manage-I could not keep up with the workers I oversee. I have worked for the same company for the past 26 yrs. when the owner (he is 72) retires I will probably have no choice but to find something radically different to do.

running girl
03-04-2012, 03:42 PM
I work in an office. I often work with the lights off and when I am too tired to get out of bed, I come in late or work from home. It's perfect that way.

My problem is my job is very stressful. I work a lot of extra hours at home in the evenings and weekends, but I'm afraid if I don't I will fall behind. I know I've been making mistakes.

debbie-b
03-05-2012, 01:45 PM
Goodness some of the jobs you guys have I could never do! Debbie-b, you are a strong woman. I don't know how you are managing all that back-breaking hard labor. I hope you can find something in the the future that will allow you some rest!

Shine,
I also have a desk job where I type and answer calls all day for a major credit card company.. the fluorescent lights give me rashes on any part of me exposed... the joints in my fingers and wrists throb from being used so much.. and I also get the "lack of oxygen" feeling you described too, but I also have asthma and my inhaler seems to help. Try not to get too down on yourself. I'm new to lupus myself and have been in what the dr has called a "huge flare". I know it sucks feeling so helpless and that you can't do anything right, but you will get through it. You did it before and you can do it again. Just like you said "you ain't dying" so don't let the lupus get to you. I know we all have good days and bad days. I wonder if the stress of starting a new job caused the flare?

Thank you for caring.
Most of the time, I don't know myself, how I am able to do this job. But as of now, I don't have a choice.
My rheumy tells me all the time, " you are supposed to rest your joints and body, instead you abuse them".
I can't lose my health insurance, the one my husband has, is expensive and doesn't pay for much.
It is just a matter of time, until my body says ENOUGH ALREADY.

Debbie

Ellie Hansen
03-08-2012, 08:17 AM
Hi Debbie,
I currently am working as an event planner - though I'm not sure how long I'll be able to hang in there. I know that it's not physically strenuous, but I've noticed that the stress from the job has had a physical impact on me, much more so now that I have lupus. I know what you mean by feeling the added stress of not wanting to lose your job. My husband has put a lot of pressure on me about keeping me job because I've been blessed to be making a good income off of it and he doesn't understand the severity of this disease and how much of a toll it takes on the body. I'm afraid of what will happen when I reach the point where my body says "enough". What will we do? We gotta try and hang in there the best we can, but at what point do we just have to say, "I can't take it anymore"?

bunny28
03-08-2012, 08:24 AM
I teach and right now I feel well most of the time. My energy definitely dips at about 3pm as someone else mentions and so I am glad to be in a early start school which means the children have headed home by then. Of course this means being a wife and mother happens with huge headaches, fatigue, aches and pains. But to be honest, since being diagnosed 1 year ago and getting on meds, my quality of life has improved. So although I know I have had small flares since then, I try to be positive and happy with what I can do at present that I couldn't do before. I can't imagine doing a labour intensive job, standing, walking, crouching, sitting on the floor, etc is enough activity for me in my day.

debbie-b
03-09-2012, 01:02 PM
Hi Debbie,
I currently am working as an event planner - though I'm not sure how long I'll be able to hang in there. I know that it's not physically strenuous, but I've noticed that the stress from the job has had a physical impact on me, much more so now that I have lupus. I know what you mean by feeling the added stress of not wanting to lose your job. My husband has put a lot of pressure on me about keeping me job because I've been blessed to be making a good income off of it and he doesn't understand the severity of this disease and how much of a toll it takes on the body. I'm afraid of what will happen when I reach the point where my body says "enough". What will we do? We gotta try and hang in there the best we can, but at what point do we just have to say, "I can't take it anymore"?

I know that day will come for me sooner than planned.
But if it does, we will manage. My husband want's me to quit today, but I want to try and hang in there a little longer.
We'll see.

Debbie

krystleg87
03-09-2012, 02:36 PM
I have somewhat the same job as Lexie, except I'm an Administrative Assistant with some Accounting work. But all that typing does aggravate my arthritis & my wrist/fingers do start to hurt really bad. I also sort & distribute the mail which I dread because I work in a two story dr's office so the elevator is usually full & I have to take the stairs. Staring at the screen for long periods of time dries my eyes out & they tend to burn. There really is so particular job if you ask me that could accommodate these symptoms.
Either you're going to hurt from moving too much or not moving enough. I wish I could be a professional puppy cuddler as well. :-D

Shine
03-09-2012, 09:48 PM
I think we need to start some kind of dog cuddling agency and find us all work as puppy dog cuddlers.

I quit my office job anyway. Turns out the boss was a complete [insert insult here.] It made me ridiculously miserable so I just didn't go back after the weekend.

I'm applying for jobs now and keeping an open mind about it. Don't want to say "I can;t do that job because...flouro lights, lots of walking etc" but still trying to be sensible. Whatever job I do I'm sure I'll come across some issue but I'll just have to suck it up!

I too go downhill at about 3pm. Afternoon naps are seeing me through at the minute. Not even naps. Just lay downs. And I feel fecking miserable. Having a shower wears me out. Truly appreciating the spoon theory atm. Anyone know where I can get any more from?