RA/Lupus causing problems at work | Arthritis Information

I have had RA since I was 16, now Lupus and Srojens too at 43. I have always been a go getter but all of this has about knocked me the whole way down. My most recent flare started about a year ago, unable to control, started Enbrel 3 months ago. My dilema is about 7 months ago I had an opportunity for a promotion. I really didnt want to take it but the other girls in the office and my husband talked me into it. I didnt feel I could handle it and the flare too. I tried to turn it down before it went info effect and they told me everything would be fine, I even told them about my flare and my concerns. They again told me not to worry. I have now been in the position since July and fight every day to get out of bed to get to work and then fight for every minute while I am there. I am worn out and now they are giving me grief about not being up to their expectations. There is no other position there to move too only the door, which I cannot afford to quit. Not sure what to do. I try not to show my pain and the fact that sometimes I have no brain what so ever but it is really getting to me. I am not sure what to do or where to turn now.I have no answers for you, but wanted to show my support and empathy. I retired 6 months early (couple years ago) because I just could not go on dragging myself into the office. People truly do not understand because we "look normal." There is just no way to describe that unbearable fatigue to those who have not experienced it. They think you can just "take a nap" or something. They are clueless.

My heart goes out to you.

You are absolutely right cat. Fatigue is like having the flu all the time without a break. Every day at dinner time, I have to take a 3 hour nap. By the time I wake up, dinner is made, eaten, cleaned up and everyone has gone their separate ways and the house is quiet. I feela bit guilty. Can you come home and go straight to bed for a nap? When I am flaring, my rheumy says I need 8-10 hrs at night and 2-3 short naps during the day.Owiemom you hit it on the head. We look normal and people don't understand. You know someone told me about the old rasin and gin wifes tale. And scince i can't drink from all of the pills they gave me a small box of rasins. Thats supposed to fix me. Not to mention i have been fighting an infection for a month.

Oh I do not have an answer for you. I am on a savatical myself. All I have achieved is becoming poor. But i have been to sick to work. I called an old employer to see about a part time job. He said things were slow at the moment. Just as well because i have been to sick anyway. But i plan on getting well. I am just not sure what day that will be.

well scince you mentioned the money thing. It is a big thing. Do the best you can. Thats all that you can do. If it ends for some reason then except that and move on.

For me it is slow season and I need a another job because of the economy for one. And like I said i have been to sick anyway. Sorry for rambeling but sinus dranage and my meds are mixed up and i can not sleep. Maybe you will get over this flare soon. We can hope.

FMLA and/or ADA come to mind - at least until you get your flare under control. How large is the company you work at? Do you have disability benefits? Would your doctor support you working p/t or is it getting to where you may need to take a short-term leave? Or, are you able to request a flex schedule or work from home a couple of hours a day? Maybe come in a little later or split up your day and finish up some work at home? This is the worst thing about RA and working. I sometimes feel like I'm stuck in this same position and company because of the stability. Even if I wanted to find a different job (which I don't) I don't like feeling like there are no options.

Hope things settle down for you -

Cathy

I am so sorry. I feel that way too some days I feel like I could lay in bed and sleep for days on end and still get up tired. I have the same problem myself. All I can say is do the best you can for yourself health-wise and family money-wise. Really think about what might make you more effective at your job. Then inform your boss, and ask for support on those items.

I know it's not easy. You are not likely to get much support from work. I work for a huge company that gives multiple millions to charity but has little regard for employees.

Thank you all for your replies and caring comments. Today was really rough and I needed the extra support. I am going to check with my Rheumy next week to get his take on disability. I had one in the past tell me that he didnt believe in it. Hopefully this one doesnt feel the same since I am at my wits end.

No time for naps (other than the unintentional ones I take at my desk) I have a 14 year old that keeps me on the go every night. I run on 100% caffeine which I know is not good.

Disability/FMLA/ and part time work is not an option. No Disability ins, cant afford FMLA and they definitly will not work with me on part time work. I get the usual comment, you dont look like there is anything wrong with you. They think it is just an excuse so I try not to even mention it at work anymore. Hopefully disability will come through, I never thought I would even mention going that route but I swore I would do something if I ever got to the point of calling in sick because of my disease. I am sooooo close.

ncpalinda2008-09-23 20:13:05

Linda...I completely identify with you. There is a post on the board from Monday where I was talking about brain fog issues. What you describe is exactly that. Not only does the pain and stiffness handicap us, but the mental fog and fatigue bouts we fight are just as disabling. It gets scary to think how we are going to manage to keep our jobs when we feel like we could crawl in bed and sleep for days.

One suggestion I received and have started using this week is getting back to my yoga. No it's not a cure all that's for sure, and I am certainly limited on what moves I can do, but theory is if we exercise just a bit and can get our blood moving it will help us build energy. I've only been doing it two days now so I haven't seen results, but I'll let you know how it works over the next few days.

Another suggestion is to find you some help in the evenings with your 14 year old. If you could get help during the evenings you might be able to take care of you during that time. Naps, light exercise, massages, warm baths. Possibly a family member or close friend can help, or even the parent of one of your childs friends.

You need to slow down and and build some "me time" into your regular schedule.

I feel for you too Linda, I haven't got any solutions for you, but admire you for what you do. I don't know how one works long hours with RA + others, the fatigue is unbearable when it hits and when you are working it would be even worse. I do think though you need time for yourself at night, maybe your 14 year old could help, so you can rest?, A little light exercise does help, I know its the last thing you could possibly think about, but energy does make energy and you will be surprised how good you feel after. Hope things do get better for you soon...AnnieThank you both for your replies. I read the posts to my daughter. I think it sunk in!

I have talked to her friends parents and we are trying to work on some type of schedule for pick ups, will even help with the gas shortage around here. My husband has been stepping up to the plate on his days off, he works 3-11 and is never around to help much. He told me to go sit down when I tried to do dishes the other day. I wrote that down in the history books!!

We are going to work on our finances this weekend since I read somewhere that you will never get approved for disability if you are working. I thought I was doing the right thing dragging myself into work every day.....guess not. Somehow, someway I will find a way to not work and take care of myself first!!!

I appreciate all your suggestions.

Linda