Curious to see how many out there are still working full time jobs that are somewhat physical as well?
I work full time. I would love to work part time but for various reasons I cannot. I am in health care and am on my feet 9-10 hours a day M-F. Thank goodness for the weekends. By the end of the day I feel like crying I feel so bad. Like today. I struggle with pleurisy a lot and I’ve got it yet again. Feel like I have a knife in my back. It can be very stressful and not the best job for someone with lupus. If I could work say MWF I believe I could handle it easier.
Honestly if you do work full-time it will be with pain . I use to work part-time at a desk job and had to quit that. I finally deceided that my health comes first and no job was worth killing myself
I work full-time also…not on my feet but I do drive 2 hrs a day and work 55-60 hrs a week. It definately is not easy.
I have work full-time and than down to part-time. Working puts so much stress on my body all my doctors told me that I had to quit or I was going to continue to go down hill. So I made the real tough decision to to go on disability for my health. I want to see my thee girls grow up and have families of their own. I did as the othe day how likely it was for me to go back to work and their reply was no. ;(
I am now on disability due to interstitial lung disease, which has reduced my lung capacity to 30 percent, and lupus, which has been an affliction of mine for about five years. I lost about 40 pounds in the last several months (from 170 to 130 and even lower at times). My strength has declined considerably from both the inability to continue lifting weights at the gym and the weight loss in general. The simple act of taking a shower and changing clothes in a dreaded nightmare each day. After getting dressed my breathing is so bad I appear to have just run a marathon. Because even the smallest exertion - things I once took for granted (such as moving lightweight boxes around, etc.) - leads to further breathing problems, I cannot work any longer.
I hate being in this position. I enjoyed my work as a journalist immensely, and would eventually love to return to writing for a living, but sometimes just the morning walk to the car is too difficult for me as a result of heavy breathing. For a while I was allowed to work from home - a scenario that actually resulted in greater production from me on a regular basis. But even that wasn't always possible due to lupus flare-ups that crippled me when least expected. I have had to be hospitalized frequently when my breathing takes a turn for the worst, which means many absences from work, which I understand can't be tolerated.
I guess the point is you sometimes have to resign yourself to the fact that you are very sick and cannot live entirely as you did before, with many of the activities you once enjoyed being eliminated, possibly forever. But it doesn't have to ruin your life completely. I still manage to engage in some enjoyable pasttimes - reading, etc. - and even attended a concert by Chrissie Hynde and the Pretenders at Nashville's Ryman Auditorium. It was difficult upon departure, as I had to walk quite a distanxce back to my car, but a very compassionate middle-aged woman saw me struggling and walked me to my car to ensure I was OK to drive home. She refused to leave my side until I was in the driver's seat. So there are still ways to enjoy life if you try.
Thomas Franklin
I work full-time as an environmental control service tech in a hospital. Its physical demanding, face pace, and stressful. But I cant quit, I need the insurance to maintain my health. I see how patients get treated without insurance. I yet to make it through my shift without having a breakdown in a restroom. I have intermittent FMLA so I can call out two days a month without worrying about job. There are several co-workers in my department that have FMLA and we have target on our back. I just take it one day a time and rest before I go to work.
Sorry to see you're having such a struggle with your lungs. Maybe some of the stuff I'm doing will help.
I have interstitial lung disease and see a pulmonologist regularly. This is mostly from Sjogren's (secondary to lupus).
The doc has prescribed inhalers and nebulizing (with meds) 4 times per day. I get frequent lung infections and take antibiotics. This allows me to engage in fairly normal daily activities. No I don't work and I'm not what I used to be; but it's very important to me to be able to walk my dogs, exercise and take care of my own needs. Yes I do have help from my ex H when some things become overwhelming. The lung treatments keep me going.
You got to hold on.
.
Thomas Franklin said:
I am now on disability due to interstitial lung disease, which has reduced my lung capacity to 30 percent, and lupus, which has been an affliction of mine for about five years. I lost about 40 pounds in the last several months (from 170 to 130 and even lower at times). My strength has declined considerably from both the inability to continue lifting weights at the gym and the weight loss in general. The simple act of taking a shower and changing clothes in a dreaded nightmare each day. After getting dressed my breathing is so bad I appear to have just run a marathon. Because even the smallest exertion - things I once took for granted (such as moving lightweight boxes around, etc.) - leads to further breathing problems, I cannot work any longer.
I hate being in this position. I enjoyed my work as a journalist immensely, and would eventually love to return to writing for a living, but sometimes just the morning walk to the car is too difficult for me as a result of heavy breathing. For a while I was allowed to work from home - a scenario that actually resulted in greater production from me on a regular basis. But even that wasn't always possible due to lupus flare-ups that crippled me when least expected. I have had to be hospitalized frequently when my breathing takes a turn for the worst, which means many absences from work, which I understand can't be tolerated.
I guess the point is you sometimes have to resign yourself to the fact that you are very sick and cannot live entirely as you did before, with many of the activities you once enjoyed being eliminated, possibly forever. But it doesn't have to ruin your life completely. I still manage to engage in some enjoyable pasttimes - reading, etc. - and even attended a concert by Chrissie Hynde and the Pretenders at Nashville's Ryman Auditorium. It was difficult upon departure, as I had to walk quite a distanxce back to my car, but a very compassionate middle-aged woman saw me struggling and walked me to my car to ensure I was OK to drive home. She refused to leave my side until I was in the driver's seat. So there are still ways to enjoy life if you try.
Thomas Franklin
I work full time in healthcare and am on my feet and walking regularly. I am desperately trying to get into a position where I can go to part time, but that’s a while away yet. Sigh. I too have FMLA and I can miss up to 10 days a month, but thankfully have only used it for one 3 day bed ridden illness.
I work full time part time. I have just under two acres to care for and I hike at least three days a week for anywhere between 3-12 miles. OTC meds keep me on my feet most of the time. When It catches up to me tho and I spend a day or two on my rear-end or in a hot tub of water nursing myself back to my feet. Since I hurt just as bad whether I am on my feet and moving or sitting/laying around feeling every ache / pain I force myself to my feet and move. It’s not easy but my stubborn dutch heritage won’t allow me to stay down unless I drop.
I worked full time and finally it was just too much, ended up in the hospital because my body just couldn't keep up. So right now I have been on short term disability for 2 months. I hope to go back eventually, but it will probably NOT be a full 40+ hours a week.
I work full time
Come tax season I will be working very long days and on a full time schedule. I hope I can keep up like I need to.
Blondie said:
I work full time
Thank you for your replies, sorry for not getting back sooner but I don't get the chance to get on here so ofen anymore since my laptop died on me and this work computer is soooo slow, it's frustrating!!, lol I had heard from another lupie that only 31% of lupus patients continue to work full time and was very surprised by the low percentage so just wanted to get some feedback. I do still work full time, however the last 3 yrs I had switched jobs from retail management to night auditor at a resort and it is obviously alot less demanding as I can sit for at least half of my 8 hr shift. I am going back to retail in 1 more week because my current job does not pay very well or offer benefits or pay increases so dead end job, time to change! I'm a bit nervous about getting back into the physical demanding aspect that comes with retail but I guess I won't know if I can still do it unless I try. I believe delia said working full time would mean working with pain, and I do agree but I figuare I have pain anyway, so I may as well try to move forward a little, lol. I cant afford a place on my own just yet and I feel I am putting a burden on my son to stay home to help me out so I am hoping this switch will give me the opportunity to move back up the ladder again to what I used to make 3 yrs ago. Fingers crossed!! It is not easy to support yourself and being sick on top of being divorced, ugh!
Was only a year + ago that I stopped. I worked full time and part time when I had lupus, it was tiring, but it used to be okay, though I had one really bad year. I’ve had it 18 years. But I didn’t always work.
I am currently working a desk job but with lots of travel and it is tough sometimes. Over the last 3 years I have had to take a couple of 2 month sick leaves. Like others i struggle on because I need the income and the benefits even though at times I come home and go to bed until the next morning when i have to go to work again. Different people have different issues with their lupus and some can function better than others. i could not sustain a physical job and if I did not have the employer I have would likley have lost my desk job long ago due to sick days and appointments. Good luck with the job change I hope it works out- if not you can always go back to a desk job. Meg
I wish I could be more encouraging, but I had to leave a high-stress, long-hours (and high paying) job after my diagnosis while I tried to get the symptoms in control. After a few months I realized that it would not be smart (or maybe not even possible) to go back to that career, so I opted for what I thought was a less-stressful, part-time job. I couldn't do it. In order to survive my shifts I pretty much slept whenever I wasn't working. Ultimately, the lupus brain fog was causing me to make enough errors that I had to quit. Fortunately my disability came through about the same time.
Conversely, I did work with a woman who had been diagnosed with Lupus many years ago and you would never know she had Lupus. She ran around the lab like a little tornado getting things done. She was almost never out sick. She worked long hours under enormous stress. Looking back, I have no idea how she did it. So....it can be done! I think everyone needs to figure out their limits individually.
I don’t exactly know what to write here or how to do it, but I’ve only been diagnosed over a month ago after years of trying to find out what was wrong with me! But I’m working 26 hours a week and in college fulltime. The worst I have experienced is joint pain and sometimes migraines and feeling extremely tired, my doctor has told me I’m pushing myself too much and that I should cut down on my workload. I also have a 1 year old son. I honestly don’t know what to write or where to write it. Sick of people asking “what is lupus” or stupid questions like “is it contagious?”
I work full time. Some days are downright tough to get through. Other days I feel normal. It can be very challenging at times but varies day to day.
I guess I'm stubborn like you Susan! lol I figuare staying home laying in bed doesn't releive the pain so may as well get up, and get out. Been working full time since I graduated school many yrs ago, took 1 yr off when I had each of my 2 kids then back to work f/t when they turned 1 yr old. And I also hate asking people to do things for me so I tend to struggle and do it myself instead of asking and this drives my kids nuts, but my Mom was the same way. Not sure if it's the German, Irish or Italian heritage in me. We all do have different tolerance levels as well though. Thanks for your response. I do work full time but not very physical job and I am switching to a much more physical job basically because I can not get benefits at my current job and with lupus I need to get benefits so I can get to a specialist. Currently I go to the free clinic and they can't help me with the lupus said I have to go to a rheumy on my own.
Susan Roberts said:
I work full time part time. I have just under two acres to care for and I hike at least three days a week for anywhere between 3-12 miles. OTC meds keep me on my feet most of the time. When It catches up to me tho and I spend a day or two on my rear-end or in a hot tub of water nursing myself back to my feet. Since I hurt just as bad whether I am on my feet and moving or sitting/laying around feeling every ache / pain I force myself to my feet and move. It's not easy but my stubborn dutch heritage won't allow me to stay down unless I drop.