Good morning! I would like to know how many of you continue to work outside the home? I am back to work today after taking off Monday and Tuesday due to severe fatigue and pain. Also had to take a day last week. I am worried that I will eventually have to stop working and while its not the best job on the planet, I fear I will become super depressed if I stop. Thanks for any and all insight. H
I still work outside the home and like you, have to take a day or two off here and there because of pain and fatigue. When my doctor was trying to get my flare under control he restricted my work hours to only four hours at work a day. I drove my family crazy because I couldn't stand not being at work. I have worked for the same company for 6 years and know that I am very lucky because they allowed me to set up an office at home for the days I am unable to come to work, but not being at work causes anxiety, stress and depression and we all know and understand where that leads. Keep working for as long as you feel that you are able and when it comes to a time where you are not able to go "to" work, maybe you can find something that will allow you to work from home. Either way, just keep thinking positively.
Thank you Genny. It is hard for me right now. I have worked at this job for 12 years, so it is a big deal to me. I feel overly guilty about having to take days off. I know I shouldn't but i do. the blessing in all of this is that since i have been here so long, I have 8 weeks of sick time built up which would cover me short term if I had to take weeks at a time. I know I should be more patient with everything but as I'm sure you know, being in pain all the time wears you out. My nerves are shot which wears you out even more! Thinking of looking for alternative treatments like yoga, acupuncture, massage, etc. Have you had any luck with those??
Thanks,
I worked until july 2013 I went out on short term disability for 6 weeks at a time for 2 years before my doctor said enough no more working my short term disabilty was a life saver and now it has turned into long term disability. I spoke with human resources about our policy on sick days when i first started having problems. I wished i would have stopped working sooner.
i had to stop work altogether 11/2 years ago i take anti depression meds but i have been on them for years. i had on choice as i ended up in hospital with a bladder (i have afew a year) infection but this one went to my head and my work would not take me back as i have memory problems plus i found out i was not insured for any accident i had at work as the insurance company would say it was my lupus...
iam on disability my doctor also said that was it
I’m still working 45-50 hours a week. I don’t recommend it. I am in healthcare and we don’t get lunches or breaks. I was ok just fatigue and moderate joint pain until last year. Problems got worse in March and culminated in a ten day hospital stay in summer. Multi organ serositis. Heart, lungs, liver etc affected. I still have not got back to my “usual lupus”. I missed about a month of work but had to go back to work. Really I had to. I do crash completely on weekends. But worry sometimes if pushing myself like this is a big mistake.
I actually just went back to work after being at home for a year. I’m doing ok, just tons of pain towards the end of the day and feeling completely drained. I couldn’t turn it down, I have been trying to get a job like this for over 3 years after moving out of state. I am worried though, how much will I be able to push myself. I got citoxin infusions in December and feel that that was what really got me over my flare.
About seven yrs ago before I knew I had lupus I worked as a special needs teacher. I would get sick on the drop of a dime. I would get four times a yr and never knew why I felt like a cold was always coming on. I stopped when I felt like I couldn't give my all.I loved what I did but couldn't handle the same thing happened years before with going to school and working at the same time. I couldn't concentrate I would hide out at the library between classes to nap and something id I over sleep and miss class. Or I just couldn't focus. I felt so stupid. I couldn't explain what was happening to my parents. They were already labeling me the smartest lazy person. And they would roll their eyes at me for any complaints. My parents were so caught up in their single lives and labeling mental for my complaints. To the point two years I cut my father out of my life. He was pissed that I didn't attend an out of state family vacation with my son so he could show off his wealth. When I called him to apologize and to tell him I was swelling in the feet and knees and was just hurt to walk any beach. and since he found out through the family this week I was diagnosed with lupus that I should call him and allow him to meet my new baby daughter. Lol not happening. I have had an online business in which I do wedding accessories but ive had to slow down bc for the first time my hands have been inflamed. So im taking a break until flare up leaves and these docs can some how help. Im lucky to have had such a good husband that always believed there was something wrong that was out of my hands
Hi,
I was diagnosed with SLE, Lupus Nephritis and RA at the age of 18. I have been working full time and have finished my Bachelor's degree over the years. I also commute to work which includes a car, train and a shuttle. I am only 29 and I try to stay fit and in shape. I refuse to have this disease run my life. I try to be as normal as possible, despite all my medications and doctors visits. But I do listen to my body so if I'm truly fatigued, I sleep! and boy can I sleep! haha!
I was getting up, going to work, coming home and going to bed earlier and earlier to feel better the next day to start all over. I had to take more and more time off. My doctor said a year earlier to stop work. I finally stopped in 2011. I cannot see any way of me working now, I am always sick, just sicker on some days.
Thank you all so much for your responses. Means the world to me to k now others understand where I am and what I feel.
I am in the process of applying for disability retirement through my job. I felt bad because I was missing so much work and they needed me there and they needed someone they could count on. Because of my illness SLE,it made it difficult for me to predict when I would be there and when I wouldn’t. I had to be out for 6 months, then I tried to come back for 3 or 4, but the doctor ended up taking me out again. After that for my sake and for theirs I have decided to take the medical retirement. I feel very blessed to have this. I know many people don’t. So I’m home and it’s hard sometimes I get lonely I get bored but I know I’m doing the right thing for everyone. And I intend on making the best of it.
The Rheumatologist I was seeing for several yrs prior to my diagnosis with Lupus Nephritis helped me work as long as I could. I worked 18 yrs but had many long & short term disability episodes. After having IV Cytoxan on week ends & working all week I had to reduce my hrs to 35 a wk. I needed the job for insurance benefits for myself & family. My symptoms got worse with multiple hospital admits with Sepsis & nephritis. Everyone’s Lupus is different, I feel I needed to stop working as my organs were being affected & I didn’t respond to conventional treatments.
I'm very fortunate that my husband and I have our own company. He runs the day to day operations and I run the office. There are weeks that I only work 2 days and then there are weeks I work the whole week. I have been working with my husband for 3 1/2 yrs now and love it. He is very understanding when I don't feel good. Before working at our business I was working at a Dr.s office and I wasn't so sick. So I didn't have many sick days then. It wasn't until after I quit the Dr.s office when I got sick and diagnosed with Lupus and IBS. I'm sure if I still worked at the Dr.s office I'd be missing a lot of work and probably wouldn't have a job. I too am tired all the time and either in pain or sick to my stomach. If I stay home full time I'd be depressed and probably wouldn't even get out of my pjs or off the couch. I can't hardly stay home the days I am sick and can't come to work from getting really depressed. I guess there is no middle ground with Lupus and IBS.
But do listen to your body and do what it is telling you to do. I know if I don't listen to my body and push myself harder then I'm at home sick longer. Good Luck.
Ann A. said:
After my dx with lupus I was either in school or working full time for more than 40 years. The advantage of the career path that I chose was that it often did not require that I be in my office five days a week. I was often able to be on campus MWF or T Thu and work from home on the other days. There were summers when I did not have to teach and my "work" was research and writing that I could do from home. I actually wrote my second and third books while recuperating from total knee replacement surgeries. Lupus required me stay in one spot for long periods of time. Writing books requires that a person stay in one spot for a long time (at least it did before the entire world was digital and connected 24/7). So, I was in the position of having a profession that sometimes benefitted from my need to stay in one spot.
Even now that I have retired, I am working part time by taking and teaching courses online. The ability to work from my home. even from my bed has been a game changer for me. That is why I constantly advise young people who have been recently diagnosed to consider career paths that allow for the most telecommuting. If I could not work online I would be severely depressed.
I hope that you can find a way to work that keeps your brain going and gives your body a break.
Best of luck.
Hi Ann, I would love to hear more about how you got into the career that you have. I would love to get into the field of writing and I also love to teach. I don’t know if you’re willing but I’d love to chat privately sometime about that. If that’s possible just let me know. Thank you for sharing all of your wonderful wisdom and life experience. Marti (short for Martha)
I'm working on getting disability. I've been in the hospital more than work. Lupus, Scleroderma, sojgrens and connective tissue disorder. Which has made me totally depressed and high anxiety. I'm on short term disability from work right now.
I'm just waiting on the states decision.
I love this site because people understand what we are going through. Its a living hell. :-(
I've returned to full time after being off work for a year after my surgery. I'm now in an office, and although I have increased fatigue at times, I give in and rest when I need to. I really wasn't sure that I'd be able to return to work, but leaving my old job was the best decision. I'm started working with temp company in a year's assignment to see how I do, and I'm going to start looking for a permanent position now..
I’m home on disability…I have been since a severe motor cycle accident in 2006. I had tried to go back to work in 2007-8 but it didn’t work out. I was approved in 2009. I’m going nuts though and it’s just not enough money. I really want to “do something” which would also help my mind be more active. Too much time tocsin and think about how crappy you feel does not help anything. I guess I’m between a rock and a hard place.
I had to stop about 50....but before that i did go part time. I was very lucky that my boss and job was very understanding and supportive. My doctor also wrote letters on my limits...like no overtime....i worked in newspaper so there could be a lot of overtime. Though i was part time, i would work full time in time of crunch periods.
My first Rheum told me to try my best to keep working as long as possible and i think he was very right. After i did stop i did get depressed that i was no longer able to contribute to the house or support my self if needed. I did not go on disability as i felt a lot of shame about it. Eventually when i money was really needed, i did go on it , about 6 years later. I won almost immediately so that was good.
I think when you stay at your job it does help both with your self esteem but also keeps your mind off your illness. Plus it makes you get up and try to move or keep moving. So i would try until you literally feel like if you keep working you will die...that was what happen to me. I was crying every am before work and on my way there...i was just exhausted but i tended to push my self hard at my job though i did slow down a lot at the end.
You might speak to counselor or your doctor first about your feelings, money and how you will get by if not working.
You doctor can put restriction on your job so first i would recommend you speak with them about your job and what is going on so they can help you possibly work long as possible.