Yes, you suggestion makes a lot of sense. I'd have to enter the leave transfer program and doubt I would get 3 months of leave. But, I really feel that is what I need to give the Remicade time to get my PsA under control. At the very least, I'm going to try to telework at least 2 days a week.
Hi all, Thanks for all the responses. My fatigue is better, but I still have days that I need to sleep 12- 14 hours. I feel like I'm drugged and literally can't get out of bed, I'm so tired. I'm hoping it will get better with the Remicade. I'm eating well, lots of protein and taking vitamins - B6, , B12 and multi-vitamin. Drinking a whey shake every morning - or afternoon, depending on when I wake up.
I’m glad that your job is working with you for the leave and the telework. My heart is with you as you work/live through this.
Obviously, you need to do whatever is best for you financially, but i had an idea. Physically, taking off until I started to see some improvement with the remicade infusions was one of the best things I have done for myself. It seems, though, that you have a little more flexibility than I do (because of HIPPA, I can’t bring work home). Maybe you could apply for FMLA and work fewer hours and from home. This would give you time to see improvement from the infusions, give you a break, and allow you to continue to feel productive. Just a thought!
That's a good idea GC. I just kept thinking this won't last, I'll get better soon . . . well the fatigue is persisting. I know when my sister took off work for her Lupus she felt much better. It's just amazing how much I HAVE to sleep sometimes - I literally can't get out of bed. It feels like I've been anesthetized.
I get it. I didn’t realize how bad I was actually feeling until I let myself off the hook with work. I really don’t think that I could have made it if I had stayed on. I was so poorly managed at that time and felt awful. I’m still not back to normal, but I can function pretty well. I am really glad to be back and be able yo carry my full work load.
I'm glad you shared your story - it gives me hope that I can work full time in the office at some point.
Sorry to hear you're still struggling Frances: I have substantial fatigue and am still working p/t only. I may not where you're at but I've been there or in a similar place. Know that I am wishing you well and hoping your medication kicks in ASAP.
Take good care,
JW
I was suffeting severe fatigue for years before my diagnosis. I gave my all in work -also working many extra hours (unpaid) in an attemp to cope with my workload and illness. Finally diagnosed with PA in Jan 2012 (had psoriasis /euvitis/iritis diagnosed 2010). Finally a link was made-I was begining to think it was all in my mind!
Too weak to get up-too tired to dress-thinking I was lazy!
I finally gave into my body Feb 2012. Been off work 12 months. During that time ive had councelling for depression, a shoulder op, an op for prolapsed organs (all linked to PA) and trial and error of meds.
Now on 20mg Methotrexate weekly and 1000mg Sulfasalizine a day plus Folic acid 6 out of 7 days. I didnt want to take meds but didnt feel I had a choice, I was so ill.
Increasing all my meds and adding Sulfasalizine have helped-Im not so fatigued but its still not fully under control. I am now hopeful of being given anti TNF Humira. Having “failed” two DMRDS I now fullfill NHS guidelines to have it.
Hang in there -I never thought I would get well enough to live a life let alone go back to work! Yet Im making arrangements to go back in the next 2 months.
This disease takes over your life. I still have severe pain and know its starting to affect other areas but with Tramadol pain relief Im managing. I had cognitive behaviour therapy with a Psychologist which has given me another tool to help with pain-meditation. Its also helped change my mindset from “I give up” to “ill deal with this it wont beat me”!
Just completed my 3rd week back at work…its hard I’m tired but I’m better and getting stronger. It just takes time x
I've been off work since January & if I'm not just fooling myself, then I think I'm getting slowly better. Luckily I have an understanding employer and will be going back to work, (on a part time basis to begin with), in two weeks.
But the heavy, persistent tiredness worries me, as some nights find myself sleeping 12 hours or more and still feeling I need more. Still, Spring is here, gotta stay +ve :)
"Mindset" is very important Chirpy, good luck with your preparations for going back to work.
Chirpy said:
I was suffeting severe fatigue for years before my diagnosis. I gave my all in work -also working many extra hours (unpaid) in an attemp to cope with my workload and illness. Finally diagnosed with PA in Jan 2012 (had psoriasis /euvitis/iritis diagnosed 2010). Finally a link was made-I was begining to think it was all in my mind!
Too weak to get up-too tired to dress-thinking I was lazy!
I finally gave into my body Feb 2012. Been off work 12 months. During that time ive had councelling for depression, a shoulder op, an op for prolapsed organs (all linked to PA) and trial and error of meds.
Now on 20mg Methotrexate weekly and 1000mg Sulfasalizine a day plus Folic acid 6 out of 7 days. I didnt want to take meds but didnt feel I had a choice, I was so ill.
Increasing all my meds and adding Sulfasalizine have helped-Im not so fatigued but its still not fully under control. I am now hopeful of being given anti TNF Humira. Having "failed" two DMRDS I now fullfill NHS guidelines to have it.
Hang in there -I never thought I would get well enough to live a life let alone go back to work! Yet Im making arrangements to go back in the next 2 months.
This disease takes over your life. I still have severe pain and know its starting to affect other areas but with Tramadol pain relief Im managing. I had cognitive behaviour therapy with a Psychologist which has given me another tool to help with pain-meditation. Its also helped change my mindset from "I give up" to "ill deal with this it wont beat me"!