...when you feel like various degrees of mudd on a daily basis? I used to be a workaholic now I wonder how I can even work a full time schedule because of fatigue. I sleep a full night and then need a nap or two during the day. MTX makes me sick after I eat and I always have to run to the bathroom (thats fun in a public or office restroom).
ugghhh... I could be way worse, this I know, but how do you all do it and survive financially? Its like feast or famine. Either I am tired and pain free or off the meds and crippled.
Abby
Definitely take a nap at lunchtime if you can. I did that alot if the fatigue and pain were bad. I would go out to my car at lunch and set my cell phone alarm to wake me up in 30 minutes. It wasn't a cure-all, but it definitely helped.
One word. Ritalin. And yes, I do have ADD. If I did not, my answer would be two words: Red Bull. It was that, for a while...Oh, Abby, I just can't do it anymore... same reasons. I'm not working and so am applying for disability. When I was still in my twenties, another chronic condition, that I still have besides RA, forced me to go parttime for the rest of my 40yr career, with many many unpaid medical leaves following hospitalizations. So my SSbenefits won't be much and I've still got 7 years before I can collect that. Lucky for me, I'm a lot older than you. I do know how hard it is financially it is and how disappointing when you really want to work. My thoughts are with you. The one thing that did work out for me in my field, was being in the "pool" of extras. The requirement was to be available to be called in one weekend/mo, but on weeks when I felt better, I sometimes worked 4 days. It was less income and provided no benefits, but I did have a job. I worked in a hospital, which of course is open every hour of the year. Now even that situation does not work for me because I have several chronic conditions that aggravate each other. My fatigue needs me to sleep a solid 2 hours midday to be able to relieve it's pain and tiredness and brain fog. It's my everyday cure. A 30min nap helped me get through my workday before RA, but not now. And with my heart and bowel/stomach troubles, the others' suggestions for meds and red bull don't work for me so I don't know if they really work. The only suggestion I have is to see if your workplace has a position with more flexibility. Good luck.
CathyMarie
CathyMarie2009-04-20 21:25:19While not successful at it yet, my goal is to leave work each day at 2:00, take a little nap and then finish out my workday in the evening. In the meantime, it's go to work, come home and not do much of anything else. Not really the work/life balance that I'd like.
How's Humira doing for you? Is it possible that it hasn't kicked in yet, but once it does the fatigue will be lifted a little? That's what I found when enbrel started working and it made life much better. Now, it seems like it's not working so well, so fatigue is settling back in.
Take care
Cathy
when I was really feeling poorly, I just plugged along..I know I was not as efficient at my job.... or as detail oriented as usual.. but I did my best and my company was most understanding of my times.
For a brief while I came in late (as long as I was there before the opening bell of the stock exchange, they were good about it) and sometimes left early.....
sometimes put my head down on my desk..... one of my co-workers has a couch in his office and I would use that if he was out of town...... that little down time was just what I needed to be able to continue.
Try very hard not to give up.... I know it's really difficult.. I would cry my eyes out if I had to walk from the far parking lot and felt like I had to wade through wet concrete to get to teh building and kept thinking I should get a handicap sticker for my car, but Im glad I didn't ...
You are early on in this battle, abby.... try your best to hang onto your job and keep pushing along... there were days when that is all I COULD do... just work.. come home and collapse.... truly.
Hang in...
best to you.
When are you taking your MTX? It totally sucks to have to waist your weekend; but I always took mine on Saturday night and then spent all day Sunday resting. I did nothing for years. Sunday was my day of rest and sometimes I only got up long enough to take a shower and put on clean PJ's and then back to bed. My husband handled everything and made the kids stay out of my room unless it was absolutely nessesary to bother me. If it takes you two days to get over the MTX hump.....take yours when you get off work on Friday.
I'm not sure how long you've been on MTX; but it does get easier over time. Rest when you can. It's hard to say no to stuff you actually want to do....but I really believe our bodies require more rest than your average person.
Hope things get easier soon.
I would second Lovie's idea of MTX'ing on teh weekend when you have time to "recover" and sleep!I also take my MTX on Fridays. It helps with the fatigue.
I know for now that I will need to work until my son gets through school (or remarry rich....hmmmm). I do love my job-that helps quite a bit. On the days that I feel really awful, I give my kids more independent work. Middle school works for me. Elementary would be far to demanding physically. Middle school tends to have more grading, but I can do that at home. I tend to have a rather boring social life. Work drains me and I use the weekend to try and recharge. Doesn't always work-but I try.
This is the first year where I have used all my sick days. Days off now are without pay. I am not sure really how to handle these next few years. I just try to take it one day at a time-otherwise it just seems far to overwhelming.
Right now I have no choice, so I do. I have a wonderful group of workmates, a supervisor who is beyond understanding, and like Rebecca I truly like my job.
One day at a time, one day at a time.
Cheers, Shug
I was very fortunate to have a great boss when I was at my worst. He pretty much let me go home when I felt like I couldn't make it any longer. I've found when I get my RA under control, I don't have a problem with the fatigue.
Edited to add: I admire the people who have chronic fatigue and pain and can work through it. I never could. Sometimes, I felt like a big weenie!
kweenb2009-04-21 14:07:44I also find that my boss has always been understanding. On the occations I had to go home I at least came in and got the majority of my work finished and then went home. I can't ever remember just calling in sick. An important factor that must be considered is that is not not all jobs are negotiable; jobs that must have each employee do the entire job for which she is hired. I worked as a nurse. No nurse can do only parts of her job or come late, or leave early or take longer or more breaks (only allowed 1/2 hour for meal). Some jobs just are not flexible. I do not know anything about office jobs, maybe a boss can decide to allow variations.
CathyMarie
I find it is more stressful NOT to go to work. Organizing sub plans for three different preps takes time. I do have one set of plans in the office for an emergency, but otherwise I end up in the school the morning of an absence anyway getting stuff organized. If it is a planned absence it is a bit easier. Unfortunately, I can't really do part-time either. You teach the day or you become a classroom aide. Big time pay cut.....
Copyright ArthritisInsight.com